Swimming Against The Current

Botox & Xeomin!

2026-10-13T13:11:11.693-04:00

I wake up in the morning, groggy from not having enough sleep lately and go to reach for the door that won't open. For years I've been using my left hand to do things like open door knobs, do my hair, carry bags, cook etc. It was hard to get used to doing things when my hand first curled in 15 years ago, but over time its just become natural and I've learned to do almost anything with just my thumb and index finger. My index finger is quite deformed and my whole hand aches most days but its been useful enough for me to live with it. I spent years getting botox in my hand and my leg every 3 months because that combined with my DBS would loosen my muscles up enough to at least make it less painful. It sometimes would straighten my hand and foot completely but other times it would just get weak. Over time, the botox stopped working and we thought maybe my body just got used to it. My doctor suggested we try a new drug called xeomin. It would be injected the same way the botox was. I would lay on my stomach while the bottom half of my left leg and foot turned inward. She would inject the xeomin into the bottom of my foot and my leg. Next, Jim would help pull my fingers open and she would inject the xeomin into each finger, and all over my arm. Usually at the end she would give me a little in my trapezius muscle because this is usually in spasm and causes me a lot of pain in my neck and shoulder. Last year was really hard on us and we lost our health insurance. I eventually got it back but it was different and didn't cover my injections. I spent months trying to figure out how to still get it done but nothing worked. I eventually got better insurance and took a ride to Albany, thinking I was getting them done. When I got to my appointment, I quickly realized that my insurance didn't approve them either. In August of this year I got new insurance yet again and they denied it... again. This is hard for me to deal with and I had stress from other things in life which all made my dystonia worse. Anyway, I accepted it and just lived with the constant spasms while we tried to appeal the decision. I then found out my generator was dying so I scheduled surgery for September to have that replaced, thinking there might be a chance a new generator could make my dystonia better even though I knew deep down it wouldn't make a difference. After my surgery, I reached out to my neurologist to see if she would see me to change some of my settings on my DBS since I couldn't get the xeomin or botox. So, last week Jim and I got Max buckled in to his car seat and took the 3 hour drive to NY. I had to have my post op appointment first that we knew would only take 5 minutes then we went to see my neurologist. I had to see the nurse first, where Max was scared to death of the blood pressure cuff. My doctor came out to get us and we went back to the exam room, not sure how Max would react, how long we would be there or what would be done. The doctor looked at me and said "I just got the approval for the xeomin!" I didn't know if I heard her right so I just stared at Jim waiting for his reaction. I could tell he didnt hear her either so I looked at the doctor and she said she would be right back because it seemed too good to be true. She cane back and told us it was the best thing that had happened all week, I was getting the injections!! Jim ended up taking Max out to the car and a nurse had to pull my fingers out to do the inhections. My leg was so tight the needle she used to do the injection actually bent and she had to get a new one. After over a year of waiting, I might finally get relief! She didnt end up changing my DBS settings but I will be going back in a couple weeks to work on that. She did say we dont know if my DBS will ever work on my left side because I have so much scar tissue in there. I did know that but hoped it would still work with the right settings. She also said the xeomin might not work this time because it has been so long since I got it. My hand and foot are both still clenched but this morning when I went to open my door, I realized my hand is now too weak to use. It is a hard decision to make, whether I would rather have it very tight and painful or loose and weak but can't use it. I have found the weakness is slightly better but I do get very frustrated when I cant do something. So, it seems like Im back on track to getting some kind of relief and while I wait for everything to start working, I just think to myself how nice it will be when a cure is found!

The Worry in me

2026-07-10T14:16:49.754-04:00

This is a hard topic for me to write about, and something I don't share with many people but I feel like explaining how my mind works might help others like me not feel alone. I talk a lot about my dystonia because most of my symptoms are visible and I get extremely embarassed about the way I look or walk. I try to hide my hand, which I'm usually successful at but hiding my foot isn't as easy. I walk off balance most of the time because my foot is almost turned completely sideways. I don't let it affect my speed or stop me from doing things which I guess is good but because of that it causes other issues with my knee, hip and back. Anyway, I share that stuff so people know why I look the way I do and also to spread awareness. What I don't share is the anxiety and worry I deal with every single day. I worry about little things like what to feed my family for dinner, how do I find time to clean my house, etc. I worry A LOT about the kind of mother I am and how I never feel like Im doing enough. I worry about how much my kids are getting outside, what they're eating, their friendships, their health, their future. I worry about where we live, money, what car I drive and not taking my family on enough vacations. I worry about Jim, his job and health and feelings. I worry about what he thinks of me and if he'll always love me. I worry about how people view me, what I look like, my grey hairs coming in, my weight gain. I worry about my health but that is always last. I worry about not having any friends and feeling like no one likes me. I think about how I can change the way I am, be more social and outgoing but I dont know how because I worry about every single thing I do and say. Im done with worrying, I'm just trying to figure out how to actually stop it.

Why be normal?

2026-04-01T09:15:00.002-04:00

For the last 17 years my hand has slowly been getting destroyed. Its been closed, open, dislocated fingers, and eventually everything about it was deformed. My first hand treatment was casting my fingers open but with dystonia this usually doesnt work. It was one of the worst pains I ever experienced and I had to go back and have the cast cut off that night. I had my first hand surgery in 2019 to "fix" some of the damage that was done from my dystonia. Little did I know that would turn into many more surgeries trying to relieve my discomfort and my anxiety of having a deformed hand. I wanted it to look normal so bad. I was so embarrased by how my fingers looked that I always had my hand in a sweatshirt pocket so I could hide it from the world. I never mind sharing my story to spread awareness but how embarrasing is it to drop groceries everytime you try to shop, or struggle to pick your toddler up. Over the last couple years I started seeing a new hand doctor that my mother in law told ne about. The problem Ive always had is that the orthopedic doctors don't know enough about dystonia and the neurologists don't know enough about the damage it causes. Anyway, this doctor told me my last option to try to fix my hand is to fuse my index finger. That finger had started to bend backwards so we thought if I had it fused so it was slightly bent it wouldn't look so weird and it wouldn't hurt as bad to use it. I put the surgery off for a while because Max was a baby and I was afraid of anything permanent but finally, last Monday I had the surgery. I had my last botox injection in February so I thought I would be good to have the surgery now. The thought was that my hand would be relaxed enough while the fusion healed. When I woke up from the surgery I was shocked to see that my hand was casted with all my fingers straight. All my fingers except my index finger, even after botox, have been closed in a fist for years. The botox relaxes them slightly but they have not been fully opened in many many years. The pain in my fingers during the days following my surgery was pretty severe. I could feel my hand trying to close and eventually my fingers did close inside the cast. A couple days after those fingers closed, I could feel my index finger spasming. I get sudden severe pain and can feel my finger trying to bend backwards. I thought it was just the feeling from years of it happening and it cant possibly be pushing against a fusion, can it? I decided to peak into the end of the cast because I could see the tips of my fingers and sure enough, my finger is bending backwards. What I discovered is that the part of my finger that was fused was the PIP joint but the spasm had now traveled to the end of my finger and it appears to be the DIP joint now trying to bend back. Unfortunately I have had some insurance trouble and my new insurance isnt covered by my neurologist so I cannot get an immediate botox injection to try to calm the spasm down. My DBS also doesnt seem to be working so Im not sure what my next steps are. I will be getting my cast off this Friday if I can stand it that long and we will see what happens. I am trying to stay positive but boy is it hard. I am tired, I am in pain but most of all I just dont like how my hand looks and just want it to be normal. But then I started to really think about what "normal" is. Why do I care about being like everyone else? My situation is unique and maybe I can use it to share it with the world and maybe I can help someone who might be going through something similar. When I was first diagnosed, 10 years after my symptoms started, I felt all alone and it took time to find people I could relate to. Ive lost some friends through this journey and I just want to be there for others who feel the way I did. So if you are going through a hard time, even if its not dystonia, please reach out. I would love to talk, just listen or help find doctors and things to help. ❤

The Storm that won’t stop

2026-01-26T10:20:00.001-05:00

Every day feels like a blur. I've been dizzy and lightheaded almost every day since the end of September. When I try to read anything, even just a book to Max, I have to open and close my eyes several times until I can see because when I first look at the page all the words combine into a cloud of chaotic letters that dont make sense. Every time I eat my stomach hurts so I try not to eat but then I feel even more lightheaded and nauseous. Its a cycle I hate to be a part of several times a day. My dystonia has been worse because I didnt get my injections yet but then the right side of my body started acting up and Ive been having trouble swallowing. My neurolist suggested I shut my DBS off until my appointment next week but within 24 hours my right foot was curled in. I decided to turn it back on but as soon as I did I lost control of my right arm and the right side of my face. Jim helped me switch some settings on it but when adjusting the left side of my body my right side went crazy. Something is not right and im wondering if all of this is because my DBS was not put in surgery mode during my pituitary surgery. I guess we'll see what happens next week. I have several appointments in February and Im hoping we can get some answers and figure out if all my symptoms are related or if its a combination of pituitary, gallbladder, dystonia and DBS complications. For now I'll continue to "act" normal while everything inside me feels like the worst storm Ive ever seen and I just hope every day it all stops.

Dystonia awareness

2025-12-14T14:43:00.005-05:00

Some days its hard to find the words to explain what dystonia feels like. It's invisible to most people, yet it shapes every hour of my day quietly, persistently and often painfully. I don't share this because I want sympathy, I share it because awareness matters and too many people still don't know what dystonia is, let alone how much it can affect someones life. Dystonia affects my hands, feet, back and neck. My hands ache as though they've been gripping something for hours, even when they're resting. My neck strains as if theres a weight hanging from it and no amount of stretching helps. My feet cramp and curl making sonething as simple as standing still feel like a test of endurance. I've grown stronger in ways I never expected. Ive learned patience, determination and resilience. Ive learned to celebrate small victories, like waking up with a little less stiffness or being abke to open a jar of spaghetti sauce. Im sharing this because I want people to understand dystonia. I want others who live with it to not feel alone. I want friends and strangers to know that chronic conditions aren't always visible and that someone who appears "fine" might be fighting a silent battle beneath the surface. Recently my dystonia has been worse than its been in a long time. My back and abdomen muscles are in constant spasm and I can feel my body always pulling to the left which makes every day tasks extremely painful and difficult. I will be starting a new medication soon so I hope that helps and I will be getting my xeomin injections in February. With 2025 coming to a close I am hoping that means a fresh, healthy start for 2026! I hope everyone has a very Merry Christmas and a Happy New Year!!

Starting to feel more like myself

2025-10-19T08:58:00.006-04:00

Its been almost a month since my surgery. That morning started with a splitting headache before I even got to the hospital. I think part of it was because the surgery was late in the day and I couldn't eat the whole day before or that morning. We brought Max to my parents house and headed to Boston. My surgery was scheduled for 3:30 and we got there a little after one. I checked in, got lab work and before I knew it I was changing into my gown and fancy slipper socks. I asked for some IV tylenol which helped the headache a bit then the surgeon came in and they told me to shut my DBS off even after we told them it had a surgery mode. So, I shut it off then off I went into the OR. I remember moving onto the operating table and what seemed like seconds later they were pulling a breathing tube out of my throat. They woke me up too soon so I felt it being pulled out. yikes. The next thing I remember is being in recovery and telling the nurse my nose hurt. She was working on getting me some pain meds and while we waited I was told multiple times that my DBS would not turn on. I figured once they let Jim in he would be able to turn it on for me so I didn't panic. Not long after Jim came in to see me and my DBS still wouldnt turn on. I was drifting in and out but I remember a few things like the nurse telling me I looked like Elizabeth Moss, telling me to go back to sleep every time I asked for something and then finally bringing me a drink with a straw (I was told I couldn't drink from a straw for 6-8 weeks). She kept telling me they were cleaning a room for me but I didn't actually get in my room until 11. By then I was in quite a bit of pain but had to get up to use the bathroom. Every time I sat up my nose would bleed so walking to the bathroom was difficult. They told me I could have 1L of liquid per day but weren't really measuring it so the next morning at 8am I was already more than halfway through my limit. My mouth was so dry and they couldnt find my bags (that had hard candy in it!) and my DBS was still off. my feet were both curling in and my hands were getting tighter so I started to get a little worried. I kept asking all the doctors and nurses if they could send someone from neurology to help me and they kept saying they were trying but then I found out no one was coming. The excuse they gave me was that they dont do that at that hospital... which is not true at all. I called the abbott rep that I work with to see if she knew someone that could help me and within minutes a guy named Chris was calling me. I had worked with him before but it had been a while. He was 2 hours away and ready to go on vacation and told me he would drive to Boston to help me. I started crying when he told me he was willing to do that. He said my DBS should never be turned off and if they used electrocauterization they could have killed my battery. If that was the case I would need emergency surgery to replace it. I was so scared, emotional, in pain and didn't know what to do or think. Not only was I trying to recover from a surgery but now I was thinking about what I was going to do if my DBS was dead. All I could think about was Jim and the kids, I had to get home and be ok to take care of them all. The day slowly went by, they were checking my blood work frequently and Chris came to see me early afternoon. He was able to reboot the DBS and it turned back on thankfully. He was my hero that day and I couldnt thank him enough. The ENT, Neurosurgeon and endocrinologist had all already come to see me and it seemed like once Chris left I woukd be good to go home. I got one more set of lab work and was checking the results online when the nurse walked in with a worried look on her face. They were now concerned I might be developing diabetes insipidus. More tears came and me and Jim sat there while we worried together about all of my health problems and also what the kids were going to do if I had to stay another night. I just hoped after my 6pm labs they would tell me I could go. Thankfully, the numbers looked better and I was able to go home and get more blood work the next morning outpatient. Max had an appointment the next morning at the same location I could get labs drawn so it worked out. It was a difficult day, the headaches were pretty bad and my nose was still bleeding often. My eyes hurt pretty bad too and any light or screen was impossible to look at. Over the next few days, I tried to rest. The headaches were the worst Ive ever experienced. I had left ear pain, a sharp stabbing pain in the back of my head and headaches so bad I could barely hold a conversation or open my eyes. Over the next couple weeks I had to get blood work several times and had a couple conversations with the PA at the neurosurgeons office. My cortisol was now low, which she believes was part of the reason why I was feeling so terrible still. This can indicate adrenal insufficiency, which is the biggest reason why my endocrinologist told me for a while surgery was not recommended. I was put on hydrocortisone twice a day and hoped it would be temporary. The headaches started to get better but the eye pain was still so severe. I never got any answers on why or how long this would go on but I think its just from the pressure on my sinuses and using my phone or watching TV was just too much for my eyes abd brain for a while. If I was on my phone for more than a couple minutes I would end up in a dark room with an ice pack over my head and eyes for hours. It was by far the worst experuence Ive had and for days I cried and wished I didnt do it. Now that I am starting to feel better and can actually function again, I'm a little more hopeful and glad its over with. I have many follow ups coming up with endo, ENT, neurosugery, MRI's and blood work. I am hoping everything comes back with good results and I can eventually go off my meds and live a somewhat normal life. Its definately scary and some days I didnt know how I would ever get through it but I made it. I am now finally able to pick Max up, drive my car and have conversations with people. I am trying to stay positive and hope for the best! I appreciate all the well wishes and those of you who checked on me. I appreciate my parents for helping so much with the kids, I appreciate all 3 kids for being so suuportive, helpful and well behaved, and most of all I appreciate Jim for all the rides to doctors visits, making sure the house was picked up, the kids were taken care of, I had my ice packs and medications and just for being by my side through such a difficult time. I love you all! ❤ I think my hardest days are finally over!!

Be the best you that you can be

2025-04-30T11:16:00.002-04:00

A few months ago I was feeling pretty lousy and every day I was noticing new symptoms. I was so exhausted I could barely drive and staying up to watch a show or play a game with Jim was impossible. My eyes started giving me problems and I was getting dizzy quite frequently. When I tried to read, all the words in a paragraph bunched up into one big blur. I was overweight but couldn't find the motivation to even walk to my mailbox to try to lose some weight. It was the worst I ever felt and it was causing me to be miserable and not be the mother and wife I needed or wanted to be. I had an appointment scheduled for a physical so I decided to talk to my doctor. She told me that fatigue can be caused from so many things and she would do some blood work but she suspected it was just from having a baby and getting muscle spasms from my dystonia. I knew it was more than that but figured I would just wait and see what the blood work showed. Not long after my appointment I started getting notifications on my patient portal that lab redults were in. Obviously Im not a doctor but when some stuff popped up in red and out of the normal range I suspected the doctor would be calling me with some ideas to help me feel better. And she did. I already knew I had hypothyroidism and I had been on medication for it off and on for years. But my levels were off again so she increased my dose. My vitamin D was significantly low as was my ferritin levels. She put me on prescription doses of these and also advised me to continue my medication for my pituitary adenoma as we're trying to decrease the size of that. Never in a million years would I have thought that a couple low numbers on my blood work would cause me to feel so horrible. I started all my new medications after I quickly realized I was becoming an old person and needed a pill organizer. Within a week I was a different person. I started working out every day, I felt more motivated to clean and cook, I was dancing with Max and asking my family to do things every night. Jim explained it perfectly when he said it was like someone dimmed my light for a while. I have started to lose weight and I have started a new routine and I am on my way to a much healthier and happier life because I took the step to take care of myself. I still have problems with my eyes and some days are worse than others but I am down 27lbs and Im not stopping here. I have another neurology appointment in a couple weeks so Ill be getting xeomin injections again and that will hopefully help me feel even better. In August I am having another CT scan to see if the pituitary addnoma has decresed in size at all but right now Im just focusing on walking and enjoying life with my husband and 3 beautiful kids ❤ I have learned how important it is to take care of myself and I will continue to do whats best for me so I can be the best version of myself for my family.

Updates ❤️

2025-02-21T12:22:00.003-05:00

It's 430 in the morning and i wake up to Max's whimper over the baby monitor. I get up to go get him and the first thing I notice is that I cant open the door. My left hand is so weak I cant turn the door knob. I try with my right hand even though I have no feeling in it. As the door opens my forearm goes into spasm and causes excrutiating pain. i've had quite a few problems with my arms and hands over the years, but this is the worst it's been. The Botox wasn't working so we tried a new medication called xeomin and my left hand seems to be opening a bit, but it's completely useless because it's so weak. I can't do anything with it. My right arm has been affected by the dystonia, but also I have carpal tunnel so the two of those together also makes doing anything very difficult. Hopefully a DBS adjustment will help soon. After Max was born, I was diagnosed with a pituitary macro prolactinoma. I didn't know what it was at first, but then found out it is a benign tumor on my pituitary gland. It messes with your hormones and can cause infertility. This made me wonder if that was part of the reason I couldn't get pregnant with Max. If these get too big, they can push on your optic nerve and cause vision issues. That was the scariest part for me. I started medication in August to shrink it, but I just found out it has not decreased in size at all. The next step is to see neurosurgery to see if I need to have it surgically removed. I am going to Albany in March to meet with the surgeon. I'm hopeful we can get this taken care of so I wont have any problems in the future. One more thing I want to update everybody about is the dystonia walks. When I started doing them, I had a huge turnout. It was fun, and I raised a lot of money to give to the DMRF towards research. They brought me a lot of happiness and I loved doing it. Over the years we started to get less people and life has just gotten more hectic. I don't have as much time as I would like to put into it. I'm hoping over the next few years I can put together a different kind of fundraiser so I can still meet my goals and be able to give to a foundation that has helped me so much. I want to thank everyone who did come to the walks, i appreciate you so much. for now I am going to focus on my health, my husband and my 3 beautuful children ❤

When Pineapple socks aren’t enough

2024-02-28T14:38:00.001-05:00

I wake up in the morning, get my kids ready for school, make my husband and I a cup of coffee and take three small pills. When you look at them you’d never imagine what they could do to your body but right from the beginning I was willing to do it. No matter what it took, I would do it. Little did I know, these pills would just be another part of the sadness. I continue on my day, limiting caffeine, watching what I eat and gaining a pound a minute. Before bed, Jim injects more medication into my buttocks. These medications are supposed to be getting my body ready to have a baby but for some reason this small thing that I want so badly is so hard to achieve. Since the day I met Jim, we’ve wanted a baby. We’ve picked out names, first outfits, and ways we want to tell our parents the news. It’s been 4 years since we agreed we wanted to start trying and we still don’t have it. Just before Covid hit, we decided to see a fertility specialist to help us achieve pregnancy. We tracked my cycle and took many vitamins and still we had no luck. In 2020, we decided to seek out ivf. Because of Covid, we met with our doctor via zoom, learned how the process would work and decided to make a plan to try iui. I had to take specific medications at an exact time each day to prepare my body a couple days before the procedure. After the appointment they told me everything went well and to wait about two weeks to see if it was successful. For some reason I had high hopes that the first time it would just work. When it didn’t, I was devastated. But, I stayed positive and tried again only to get more negative tests. After that we took some time off to focus on life, each other and our children. It was a tough time, the kids were homeschooled for a while, the world was pretty much shut down and I was having trouble accepting the fact that I wasn’t pregnant again. The beginning of 2022 came and we decided to start again. We had another zoom consult with our doctor and decided to move forward with IVF. The first step was starting birth control pills to regulate my cycle so they could time an egg retrieval. I was moody, irritable and had headaches. Once it was time to stop those I had to start giving myself injections every night. There were two different kinds of medications and my whole abdomen was bruised. About a week before the egg retrieval I had to go in for blood work and ultrasounds almost every day. They were looking to see how many follicles I had and how big they were so they could time it appropriately. Every afternoon I waited very impatiently for my phone call to see if it was time. Finally, 12 days later I was ready. That night I had to give myself a different injection, this one a trigger shot. Two days later, Jim drove me in to have the egg retrieval done. It was very successful and everything looked great. I was crampy and bloated for a few days after but overall just ready for the next step. I waited for the call to let me know how many eggs fertilized and 5 days later I was going in for an embryo transfer. I put on my pineapple socks and went in for the procedure, very excited, thinking this time it’s going to work! The next nine days were excruciating. Every symptom made me go crazy, wondering if it was the medication, if I was pregnant or if I was getting my period. Six days after the transfer I started to bleed. I immediately panicked and called my doctor. They assured me it was normal and it was likely from the progesterone suppositories I had been told to start right after the transfer. The next day the bleeding was worse and was accompanied by cramping. I called my doctor again, who still said it was normal. That night, I decided to take a pregnancy test and I was shocked to see two pink lines. Because I was still bleeding and the line was faint, I took another test the next morning. Positive! Jim and I were so excited but deep down I still felt like something was off. Jim went to work and I was planning on meeting him with the kids and his mom for lunch. We had it all planned out that we were going to tell her that she was going to have a new grandbaby! As the day went on, the bleeding and cramping continued to get worse. By the time I got to the restaurant, I was in tears and knew something bad was going on. I called the doctor once again and they agreed I should go in the next day for a blood test. I got the call that afternoon that it was positive but my numbers were too low and they suspected a biochemical pregnancy. I spent the rest of the week trying to figure out why this wasn’t working. Everything made me cry and I just wanted to curl up in a ball and give up. But I couldn’t. I wanted this too badly. I cried and spent a few days trying to accept it then put it behind me and focused on the next cycle. I had to wait about a month before I could start, to give the doctors time to order my medications and approve my cycle. On cycle day one, I called to let the doctor know it was time to try again. This time, I didn’t have to go through the egg retrieval because we ended up with 4 frozen embryos. The protocol would be slightly different this time around. I started a new medication right away, the three small pills twice a day. They made me moody and fat but like I said, I’ll do anything and everything to make this happen. After a couple weeks of this medication, I went in to have blood work and an ultrasound done to see if I was responding. Everything looked great and I was told to start my progesterone injections the next day and my transfer would be on Halloween! I was overly excited to get things moving again, I read everything I could online to help me come up with different things I could do to make this work but I still worried. Before confirming my appointment, I made sure it would be ok to trick or treat with my kids that night and they said absolutely, so I had the transfer that day. I got a picture of the little embryo and was told it was graded perfectly and survived the thaw great. I even ate McDonald’s French fries (yuck) when I got home because that’s some kind of myth that gives you good luck. I wore my pineapple socks, I ate pineapple and I drank pomegranate juice. All the things that are supposed to help, even though deep down I know it really is just luck. That night I went trick or treating with my family and we ended up walking more than I expected. I ended up having Jim pick me up because I was starting to think I was overdoing it. The next week I did great with keeping myself busy and distracted. Jim and I went away for our anniversary and 5 days after the transfer I started feeling nauseous so I took a test. It was negative but I just told myself that it was too early. I didn’t cry or worry, I just went on with our day and enjoyed it. That afternoon I started to get cramps and that’s when the worry and paranoia set it. I couldn’t stop thinking about it every time I felt a cramp. I decided at that point I would just wait until my blood test, which was scheduled for 5 days later. The next day the cramps were worse and I couldn’t help but worry more. This journey is nothing like anything I’ve ever experienced. It makes you crazy, emotional, exhausted. Every little thing makes you cry, worry, lose hope. The next day I spent cleaning and painting. It made me feel like a different person to just do something and get my mind off it. I didn’t feel one cramp all day and I was so happy. I started to think maybe this is the one. Maybe it worked. Maybe, just maybe in 9 months I’ll have a little baby. I started going crazy again and the next morning took another test just to see a negative again. This time I was more upset because enough time had gone by that if it worked this test would be positive. I threw it away and spent the day painting again. I had a lot of fun and that night played Yahtzee and laughed a lot. The next day, with no painting to do, jim at work and the kids at school, I sat alone in sadness all day. I can’t begin to tell you the kind of sadness this brings. I tried hard to hide it when I was around people but when alone, it’s all I could think about. As the day went on, the cramps got worse and I just knew that my pineapple socks weren’t enough this round either. The morning of November 10th I got up and had just a quick feeling of hope as I got ready for my blood test and didn’t feel any cramps. I went in at 830 then had a relaxing day getting my hair done and anxiously waited for my phone call with the results. I tried to think both ways, if it’s negative I get to have a beer this weekend for my birthday! But the truth was, I didn’t want a beer. I wanted to be drinking lemonade and crying over food cravings. I checked the patient portal every 30 seconds waiting for that number. Because I had the negative home test I already knew the blood test would be negative but I tried to still think that maybe the test was wrong. I saw the number on the patient portal finally at 2:00 in the afternoon. It was 4.94. The first cycle it was 13 and that was too low so I knew immediately that this number was not good. The sadness hit me like a ton of bricks and I just assumed they’d call me and say the test was negative. About 15 minutes later, the nurse called me and said your blood test is positive… but it’s a low positive. I never thought she’d say the word positive in our conversation so I was thrown off but held on to that little word. She said, continue your medication in case this is a viable pregnancy and come back Monday to see where your numbers are at. WHAT? how could this possibly be viable? Her next sentence is what I expected from the beginning… “we think this is probably a biochemical pregnancy”. I don’t usually play the “why me” game but right now that’s how I feel. Why won’t this work? They said it’s likely caused by a genetic abnormality in the embryo. This makes me think that our next step might be genetic testing. This will delay the process but it also could prevent me from having many more failed cycles and have to deal with the intense emotions that come with it. I’m willing to pay whatever I have to and do whatever I can to make this work. It’s so hard to hide the pain, I’ve been trying really hard because no one wants to be around me when I’m upset. But, how can you force a smile and be happy when everyone around you is pregnant and you can’t get pregnant no matter what you do? I don’t want people to tell me their pregnant or to ask me if I am and I hate that I feel that way. Maybe next time my pineapple socks will be enough to give me some luck. The cramps got worse over the next couple days and by Monday I had started to bleed. I went in for a repeat blood test, knowing that my numbers would go down. I checked the patient portal that afternoon and was shocked to see the number went up from 4 to 12. I knew this number still was too low, and now that I was bleeding it still meant this didn’t work but it was still confusing. The nurse called me shortly after and told me to watch for rectal pressure, severe bleeding, or cramping on one side radiating into my shoulder. I knew this meant that an ectopic pregnancy was now in question. The cramps got pretty severe over the next couple days but I had no other symptoms so I just waited until Friday for another blood test. The bleeding stopped but I still had light cramping. I started to get nervous and on Thursday started having shoulder pain. Of course, I went to the internet to research everything about an ectopic pregnancy but found no definitive answers. I also was going to PT for my neck at the time so tried to just assume the pain was from that. Friday morning I had a blood test and waited very impatiently all day for the results. Around 1:30, I checked the patient portal and then got a call from my doctor that my hcg went up again, to 19. Panic set in and the tears started. I’ve done too much research to know what’s going to happen if this is ectopic. The end result with any treatment is waiting months to start Ivf again. That hurts more than I can explain. The nurse told me it’s unlikely to be ectopic but I was still concerned. I now had to wait until Tuesday to go back for more blood work. This whole process is hard but the hardest part is waiting. Over the weekend I felt pretty good and enjoyed my time with Jim. On Monday I started having stomach pains and light bleeding again. I was so anxious I called and asked if I could get my blood work that day instead of Tuesday. They said they like to wait a certain number of days, so I went Tuesday morning. I saw my results on the patient portal that afternoon and they had gone up to 20. I panicked, as usual. Shortly after, the nurse called to tell me they weren’t worried and to come back Saturday, “it should start going down by then” I heard her say exactly the same way she has said it the last two times. I tried to accept that this was normal, but boy was it a long process and a lot of emotion. I waited until Saturday to have blood work again, not too concerned along the way because the number didn’t rise that much. I still checked the patient portal frequently but just expected the number to be much lower. When I saw that it had gone up to 99 I really started to worry. The tears rolled down my face as the nurse called me to go over the results. This time, she was concerned. Finally, maybe they will do something. She told me I had to go in the next day for more blood work, an ultrasound and an appointment with the doctor. It was a hard day and I kept thinking i was feeling symptoms but I couldn’t tell if I was imagining it. I was so scared something bad was going to happen, what if I was bleeding internally and didn’t know it? What if I waited too long to see a doctor? I sometimes wondered if this process was worth it, then I thought of a little baby in my arms and knew I had to keep going. Sunday morning came, we dropped the kids off with my parents and headed to Waltham to have blood work and an ultrasound. The ultrasound tech came to get me and asked me how far along I was. I was devastated because I knew I wasn’t pregnant so why is she asking me this? The ultrasound seemed like it took forever and she said she couldn’t see anything. There was no gestational sac and she couldn’t confirm an ectopic. She took several pictures then I went on to have blood work. The phlebotomist tried to take blood as she was singing and dancing and couldn’t get any. She moved the needle around and laughed that it wasn’t in the right spot. I was already emotional but this made me mad. After I flinched from pain, she said I guess I better not dig around and pulled it out. Then she tried on my other arm and succeeded but added to my collection of bruises. I then met with the doctor and didn’t really know what to expect. My fear was that they didn’t know what they were doing and I was going to end up in an emergency situation. The doctor came in and went over my numbers and kept saying “we can’t do anything yet in case this is a viable pregnancy.” I don’t understand how my numbers can be what they are, they found nothing on the ultrasound and they still think this could be viable. She kept saying it was highly unlikely and my chances of actually being pregnant were very very low but I had to have one more appointment to confirm before they did anything for an ectopic. So the plan was to wait until Thursday and have another ultrasound and blood work and if nothing has changed they will give me an injection of methotrexate to get rid of the cells in my body. I did a lot of reading on this drug and it makes me very nervous. It is a chemo medication and can cause a lot of side effects. On top of that, I will not be able to try again for months. Another heart breaking moment. On Tuesday that week I had a zoom call with my doctor to plan out the next cycle and talk about my situation. Her suggestion was to do an endometrial biopsy to scrape the uterus and this typically triggers a miscarriage. She wanted me to still get the ultrasound and blood work Thursday and depending what it showed we could plan to do the biopsy or the methotrexate injection. I went in Thursday morning and had a very thorough ultrasound, where they still couldn’t see anything. I then had blood work and met with a nurse practitioner. She said she wanted to wait until my lab work came back and talk to my doctor and then they would call me with a plan. That afternoon I got a call telling me my numbers went up again, to 286 and I have to go in the next day for a biopsy. The next step will be to check my HCG again on Monday and if it’s still rising, we will move forward with the methotrexate. I went in on Friday to have the biopsy done and experienced the worst pain ever. The nurse talked to me like I was 3 then inserted a tool to hold my cervix in place. After scraping my uterus 30 times and grinding my teeth in pain, it was over. Saturday morning I got the call that the biopsy results were back and there was no sign of pregnancy in my uterus. As much as I expected this, it was still hard to hear. I knew at that moment the biopsy was not going to take care of this and I was likely going to need the methotrexate injection. They told me to still go in Monday to check the HCG and we will make a plan from there. So Monday came and I went in for blood work again. The same situation as every other time, I checked the portal hundreds of times before seeing the number pop up: 410. I felt sick to my stomach as I waited to hear from the nurse. Finally, I got a call from the doctor herself. She said I had three options. I could still wait it out, I could go have a more thorough ultrasound or I could do the methotrexate injection. At this point I was just sick of waiting so I told her I wanted to do the injection. They emailed me a long list of side effects and things you can’t do on this medication and scheduled me for the next day. Tuesday morning I had to go in for more blood work and to get my height and weight before they could tell me the dosage and what time to do the injection. I closed my eyes and told the nurse I didn’t want to hear my weight. I had gained what felt like 80lbs through this process and knowing there’s no baby made it very depressing. They called me that afternoon to tell me to pick up the medication at CVS and go to the doctors office between 1 and 430. Of course both my kids were home sick that day so once I got them to go with their dad, I made a plan to leave. Before heading to cvs, I checked the patient portal just for the heck of it and my hcg had gone down to 408. It wasn’t a big drop but it was the first time the number went down. At this point I was just confused. I talked to jim and we decided to call the nurse to see what she thought. It took forever for her to call me back so we headed to cvs anyway and picked up the medication. She called me back 3 minutes before pulling into the parking lot of the doctors office. Basically they were leaving it up to me. If I wanted to go ahead with the injection I could or I could wait until Thursday and check my hcg again and see if it’s dropping. I decided to wait because the side effects of methotrexate scared me. Thursday morning I went in for more blood work. I was in excruciating pain from my dystonia acting up because of all the stress. It was the longest day I’ve ever experienced waiting for the numbers this time. They finally popped up in the afternoon… 461. The nurse called me shortly after to confirm that I needed to go in the next morning for the injection of methotrexate. I went in Friday morning, ready for the injection. Jim had planned to go in late so he could bring me. We had picked up what we thought was the medication on Tuesday so we thought everything was ready to go. I handed the nurse the prescription bag so she could prep it and sat down to wait. Not even a minute later she came back out and asked if we had the medication. I guess the guy from CVS only gave us a syringe without the actual medicine. It was getting later and jim had to go to work so we drove home, he went to work and I got my car to go to cvs then back to the doctor. Finally, I was ready. Two nurses brought me into a room and told me to pull my pants down a little and lean against the exam bed. It was a very uncomfortable moment but I did it while they injected the medication into each side of my buttocks. I jumped a little but it really didn’t hurt. They gave me a long list of side effects I could experience and things to avoid over the next couple weeks and sent me on my way. I didn’t feel anything that afternoon but started to get cramps that night. I figured I would wake up with cramping and bleeding on Saturday but I was completely fine. Over the weekend I never had any symptoms and as happy as I was about that, it made me wonder if it was working. There was no way to know though until I got my blood work again. Monday morning they checked my HCG and it was at 377.2. I was relieved to see this number on the patient portal and after the nurse called to confirm the number I felt much better. The medication was working. I had to go back a week later to check again and it went down to 145.8! By the middle of January my numbers were finally at 0. It was time to start again. I assumed this meant I could just call on my cycle day 1 and start the process again… but nope. I had to schedule another appointment over zoom with my doctor, which wouldn’t be for another month. Once we had that appointment and made a plan, it was time to start again. At that point, I just had to wait for my period to start to call the office and start another cycle. February 19 I was ready to go… day one of cycle #3. I started going in for monitoring on February 28th. They did an ultrasound and blood work, looking for a follicle 18mm or bigger, my lining to be 8-11 and my estrogen levels to rise. I had to go every couple days until finally on March 13th they told me I was ready for the trigger shot. I did it that night and scheduled my transfer for the following Monday, March 20th. I put on my pineapple socks once again and was ready. This time we were transferring two embryos, which were both graded 5AA. They told me that one had started to hatch already so I got a little nervous but then they said that’s good and makes them more sticky! I started to get excited and I promised myself I’d stay calm through this cycle and the first week I did. I didn’t talk about it, I didn’t think about it and I didn’t get stressed out. 7 days after the transfer I had some cramping. I wasn’t too concerned… until I saw blood. At first it seemed like very light pink spotting but by the middle of the day it was red and immediately I felt sadness. I still didn’t know what it meant because this time around there were two embryos so if one failed, I could still have a chance. But any cramping or blood scared me. So, jim and I decided it was best if I took a test to avoid the stress of waiting another 3 days for blood work. I took a test that night and it was negative. I was a little sad but over it quickly because I knew there could still be a chance. Jim and I fought that night about whether or not we should continue to do this. It’s hard on us both and I don’t know how many more cycles we could handle but at the same time I don’t want to give up. The heart ache is more painful than any brain surgery I’ve ever gone through. I’m learning how to hide the pain and be strong enough to continue to be a mother and a wife. The next morning the bleeding was worse, like a period. I wanted to cry but I didn’t. It’s like I expected it and as hopeful and excited about this cycle as I was last week, my hope just went away. I’m not trying to be negative and maybe there’s some crazy chance this could still work, I’m just preparing myself for them to say it didn’t. The next morning the bleeding was worse so I emailed the nurse. She said they could do the blood work that day, March 28th. I took a quick shower and was on my way. I’m sure you know by now how my afternoon went checking the portal 1500 times. Around 2:30 I got the call, after already seeing the bad news. My HCG level was at 0.79. This actually was easier to deal with than when it was at 4 or 13. They said right away it was negative, to stop my meds and follow up with my doctor the next day. I was still so heartbroken and the day was hard but I tried to focus on planning the next cycle… our last frozen embryo. The next day I woke up and went to the fridge to get a drink and immediately my eyes locked on the picture hanging there with my two little embryos. I tried to look away and start making my coffee but when I went to put the creamer away and saw it again I grabbed it and tossed it in the trash. My sadness had somehow turned into anger. I just don’t understand why this isn’t working. The next day we had a zoom meeting with the doctor. The first thing she brought up was how I had a cyst on my ovary and it has been there since my egg retrieval (7 months ago!!!!) she explained how it was filled with blood and could be an endometrioma which is usually present if you have endometriosis. Immediately, it brought me back to my high school days when I was diagnosed with endometriosis and told I’d likely never get pregnant. It obviously got better for a short time because I’ve had two kids but it seems like it’s back and could be preventing me from getting pregnant this time around. I was frustrated with the doctor for not taking care of this before my last 3 Ivf cycles but agreed to go ahead with treating it so we could try one more time with our very last embryo. So, I was told I’d need to take letrezole every day for two months along with two injections of Lupron. These things should calm down the endometriosis and allow me to hopefully successfully get pregnant. I spent the next few days receiving birth announcements and pictures of at least 6 people that I knew that were having babies. Every picture that came in brought tears to my eyes. I was so happy for every single one of them but selfishly so jealous. Yes, I’ve had kids before but that doesn’t make the heartbreak of not being able to get pregnant again any easier. I finally got the call a few days later about the lupron and letrezole that I was supposed to start taking. I was already having anxiety when I heard the pharmacist tell me that my copay was $1500. I thought before this call I was done crying for a while but then it started again. There’s always something holding me back. Time to start saving and figure out how to make this happen. I knew there was no way we were going to come up with this money so I accepted the fact that I would have to wait a little bit. Then we had a very generous family member offer to help us. Then, the tears started again. I was so thankful and appreciative I couldn’t function. I decided if this was the answer, and if this worked and we had a baby, this person would 100% be chosen to be our child’s godparent. We received that money that week and ordered the medication. It was delivered the following Tuesday, I had baseline blood work Wednesday and the injection Thursday. Thursday night I also started taking two small pills twice a day that would likely cause me to gain even more weight. People were already judging me and my weight so I didn’t really care anymore but I did decide to start walking (as much as I could with the Dystonia flare ups) to try to be as healthy as possible for my future baby (and for myself). Two months went by fairly quickly since we were focused on walking and healthy eating. June 13th I went in for my baseline blood work and ultrasound and later that day got a call to start taking my other medication. This was the estradiol and I would have to go back June 30th for another ultrasound and blood work. The afternoon of June 30th I got a phone call that everything looked great and my transfer was scheduled for July 6th. I started doing the progesterone injections the next day and prepared myself for my fourth transfer. July 6th came fast and this time I didn’t wear my pineapple socks, I didn’t eat McDonald’s fries or obsess over what to do and not do. I just drove there, had the transfer and then waited for ten long days. For ten days I waited for symptoms that never came. I had a few cramps here and there and nausea a couple times. On day 8 I decided to take a test and I saw two pink lines. I laid in bed next to Jim and showed him and I couldn’t stop smiling. “I don’t see anything”, he said. So then I thought I was crazy and it was in my head. We both got up and looked together under the light and saw the very obvious two pink lines. We decided not to tell anyone until we knew for sure and I saw my family more than once so hiding my excitement was so hard. Sunday morning, July 16 we got up and we all took a ride to Waltham to get the blood test. I had hope this time around because I had no bleeding and everything seemed good but I tried not to just assume. The blood test was at 10 and at 1130 I got the call. This came much sooner than I expected, before I even had a chance to look at the patient portal hundreds of times. The nurse on the other line said “congratulations, you’re pregnant!” Immediately jim and I started to cry, it just didn’t seem real yet. I had to go back two days later to make sure the number was rising so while I waited I thought about baby names and searched the internet for everything baby related. I got the call that afternoon that my hcg levels increased by 87% and they look for it to increase atleast 60%! They said it was great news and to check in one more time in two days then they would schedule my ultrasound. Two days later I had some cramping but I went in for my blood work and asked the nurse if that was normal. She said it usually means I need to drink more water and as soon as I did I felt better. I got my results that afternoon and it had more than doubled! They were very happy with the number and scheduled my ultrasound for about 7 weeks. Around 6 weeks I had a little scare with some spotting but thankfully the nurse said it was normal and it went away after that one time. Over the next several weeks I started having some nausea and by 7 weeks it was pretty bad. I also had quite a few headaches that Tylenol wouldn’t touch. I had some extreme exhaustion and couldn’t keep my eyes open most nights to watch any tv with Jim. I could feel my belly getting larger and my clothes getting smaller but I knew at this stage it was mostly due to bloating. I couldn’t wait until my ultrasound to see the little heartbeat and was eager to start telling people and start shopping! At 7 weeks 3 days we went in for our first ultrasound. I was a nervous wreck all morning picturing the best and worst possibilities of this day. We walked in to the ultrasound room and I laid on the bed while jim sat next to me. The screen was pointing towards the ultrasound tech so we couldn’t see anything at first. I felt myself shaking in excitement and anxiety. Then her face lit up and she said “I see a baby and a heartbeat!” I asked her immediately if we could see it and through many tears I looked at the screen and saw my baby’s heartbeat for the first time. I could barely keep it together while she told us that everything looked perfect and printed us some pictures. We went out to the car and just sat there for a minute while we hugged and cried. It took us so long and so many hard days to get to this point but we were finally here. It felt so real now. I was officially discharged from Boston IVF that day and the following week had my first appointment with my OB. They did a bunch of blood work and went over my whole history. A couple days later I was told I had hypothyroidism and had to start medication. Other than that, everything looked great and I had to go back for more tests and an ultrasound at 12 weeks. I was still taking the three little “fat” pills twice a day and jim was still injecting progesterone into my butt/hip area every morning. I counted down the days until that part would be over. I had gained a lot of weight through this whole process but now that I knew I had a baby on the way, every single part of it was worth it and I couldn’t be more excited. Over the next couple weeks the nausea got pretty bad. Week 10 was the worst. I also had terrible heartburn almost daily with everything I ate or drank. At 10 weeks, we took a family photo to announce the pregnancy. Of course it was car related and at that point it felt even more real! Around 12 weeks Jim and I went in to see the baby on ultrasound. It was the coolest thing and he/she was dancing and doing flips. The ultrasound tech and the doctor told us that everything looked great and the baby was very active and healthy. We decided to do blood work at that visit to make sure there was no genetic abnormalities and also to find out the gender of the baby. We were told it would probably take 10-14 days to get the results. The doctor explained to us at that visit that we would have to see maternal fetal medicine at 22 weeks because ivf babies are more at risk of heart problems. She did explain that she has not seen this in any of her patients so we stayed positive and patient until that appointment. A couple days later, the doctor emailed me and explained that because I have dystonia and a dbs I would need to get all my records sent to her from my neurologist and obgyn’s that I went to for my other pregnancies. MFM was a little concerned and asked to have a consult to make sure everything looked good. We remained hopeful and positive because I did already go through two pregnancies with dystonia. We started checking the patient portal daily, waiting for the results of the blood test. Every day it just said “labs processing”. Then, on a Sunday morning 5 days after the test, it said “analysis and interpretation.” We were excited it was moving along and figured we would see the results in another day or two. About an hour later I went to look something up and the website was still up on my phone. It had changed to “report released!” We were so excited and sat down together to review it. We opened it up and it said “your genetic tests are negative.” I already felt like crying when I saw that because all I hoped for was a healthy baby. Then jim pointed to the bottom of the screen where it said “do you want to know the sex of your baby?” We clicked “yes” and it said there was a video to watch, so we pressed play and held each others hands as the tears started. It was a video about raising your baby and at the end it said 3…2….1…. It’s a….. BOY!!! We both started crying, and hugging and sat there with the biggest smiles on our faces. Then we decided for sure that our baby boy would be named Max. And for the rest of the day we smiled and cried and talked about everything we wanted for our son. I dreamed of who he would be. Would he have dark hair or light? I imagined blue eyes and full of energy. I thought about what sports he would play, would he be shy? Outgoing? Serious or funny? So many thoughts went through my head every single day and I just couldn’t wait to meet him. The days went by fast but the weeks seemed so slow. How am I only 14 weeks along but I feel like I’ve already been waiting for Max for a lifetime. Another month went by and we were anxiously waiting for our next ultrasound! I was referred to maternal fetal medicine because of my dystonia and DBS. I had already had two pregnancies with dystonia, and one with the DBS so I wasn’t overly concerned. Around 18 weeks, Jim and I went in for our full anatomy scan and it was unbelievable. Max was very active so it was tough for them to get all the views they wanted but we saw the outline of his body and his little face and hands. Also, they confirmed it was a boy! When the ultrasound tech was done with all her pictures, the doctor came in and took some more to see if she could get a better view. At first they didn’t say what they were looking for but the doctor then starting talking about heart defects. I had a pit in my stomach as she told me they suspect a VSD. This scared me because Cody was born with a VSD and it caused eating difficulties, weight loss, and rapid breathing. His closed on its own by the time he turned one but it was still very scary. I knew we had to have a fetal echo anyway because we were told babies conceived through IVF are more at risk but I didn’t actually think it would happen. The worst part was the doctor repeatedly told me that VSD’s are linked to genetic disorders like 22Q and Down syndrome. I already went through genetic testing for Down syndrome and the likelihood of having another child with 22Q seemed too low to even be possible since I was negative for it years ago. I had a hard time sleeping that night and the next day met with a genetics counselor and had more blood work for genetic disorders, specifically 22Q. I kept telling myself everything was going to be ok but this was one of the scariest moments of my life. And the worst part was waiting… just like the waiting through IVF. I called to schedule the echocardiogram and they told me I had to wait 3 1/2 weeks! I know that doesn’t sound like a long time but right now it feels like forever. A week later we got the results from the lab work and it said low risk for all the genetic disorders they tested for. It will never be 100% accurate but the fact that it says low risk makes me feel so much better. I have multiple appointments coming up for a check in with the doctor, another ultrasound and an echo. Things are moving fast and this weekend I will already be halfway through my pregnancy! I had my 20 week follow up with my doctor which was only about 5 minutes long. Nothing significant happened and they sent me on my way with a follow up for 4 weeks later. The following week we had another ultrasound with maternal fetal medicine. It was the most amazing day. Max sat perfectly still for his pictures (unlike last time), we got a 3D picture of it and many regular ultrasound pictures showing his little face when he wasn’t covering it with his hands. The ultrasound tech said his heart looked perfect, we just had to wait to confirm this with the doctor. Immediately after she left the room, we started crying happy tears. Our little boy was going to be ok. Not just ok… he was going to be perfect. The ultrasound tech came back in to let us know that the doctor had an emergency and he would give me a call to go over everything later in the day. A couple hours later, she called me to let me know she confirmed with the doctor that the ultrasound looked great and there was no need to follow up with them for the rest of my pregnancy. More tears came! This was such amazing news and our anxiety about any health problems went down significantly. I waited impatiently another week before we could have the echocardiogram. This would be more confirmation that his heart was okay. Jim and I drove to CHAD (children’s hospital at Dartmouth) and had the echo, which just seemed like another ultrasound. Max was too active, as usual and wouldn’t cooperate or sit still long enough to see all views of his heart. The ultrasound tech got the doctor and he tried to get better pictures and confirmed that his heart was perfect, there was no VSD and there was less than a 1% chance of him being born with any heart defect. This was a huge relief and we both felt so much better about everything and couldn’t wait to meet our healthy boy. Over the next few weeks I still had nausea and gagged often. I had some pretty bad back/hip pain but thankfully Jim bought me a massage for my birthday that seemed to help a little. I was getting ready for Christmas and watching Hailey and Cody’s basketball games every week. It was a hectic time and for a brief period I got a little too overwhelmed with my baby shower and Christmas. I started getting alerts on my watch that my heart rate was high so I knew I had to try to relax and calm down. At 24 weeks I had my follow up obgyn appointment and was given a prescription for the nausea. I also was told my high heart rate was probably nothing but if it continues I would need to see cardiology for some testing. I got a little nervous but tried to relax and just tell myself everything would be ok. Christmas came and went so fast. The weather was warmer than usual so it didn’t really feel like Christmas. Hailey and Cody were with their dad on Christmas morning this year so we woke up and did gifts on the morning of Christmas Eve. We then went to my parent’s house to enjoy the night with family before the kids had to leave. On Christmas Day, Jim and I spent time with his family. Overall it was a great holiday season! Suddenly it was 2024 and it hit me that this is the year when Max is coming. I got overwhelmed again for a brief moment thinking about everything that has to happen before his arrival but my heart rate never got high again. I had my 28 week visit with the doctor and was told my blood pressure, weight gain and max’s heart rate were all great. They had no concerns and I seemed pretty healthy! The next day, we had a 3D ultrasound scheduled. We drove about an hour away to get some cool pictures of Max but he wouldn’t cooperate! Every picture he had his hand over his face or he was curled up in a ball. We figured out he’s either shy or stubborn.. or both! The lady doing the ultrasound was very nice and had us go get something sugary to eat and go back to see if he would move. He wouldn’t. So, we scheduled a rescan for two weeks later and hoped he would behave! Things started to get pretty hectic around 29 weeks. Jim got a promotion at work, which was huge! He started having meetings, going away for conferences and trainings and we started to prepare for life with him as a territory manager. I can’t even begin to explain how proud of him I was for getting this job, he worked so hard for it and deserved it so much! We knew after this news that 2024 was going to be our best year yet. We also started getting the nursery ready around this time, bringing some stuff over to my parents and getting ready to paint. This was a bit hectic because that same weekend we ended up getting our first snow storm of the season. Around this time, I also started having pretty severe shoulder pain. I realized it was the same arm I got my tdap vaccine in a week earlier. I called my obgyn doctor and went in for a visit but she didn’t think it was related to the shot. She advised me to see my pcp, who I met with the next day. She agreed with me that it probably was the vaccine since I had no accidents or an injury. She explained that it was probably bursitis or nerve damage from the vaccine and to ice it and do some exercises and if it was no better in a week she would refer me to orthopedics or neurology, depending on my symptoms. That same day I met with an anesthesiologist to go over the risks of having an epidural with my DBS. I was already hesitant about the epidural and not 100% sure if I wanted to get one. They basically told me they weren’t sure about any risks and to make sure I bring my remote to shut it off if needed and to also contact my neurologist to ask her opinion. I did have an epidural with Cody, which was after my dbs was placed and I had no complications so I thought I would be fine but I left there with some anxiety thinking about what could go wrong. The next couple weeks were pretty crazy. All four of us had the stomach bug and the kids had a couple snow days so they were home a lot. The weekend after that Jim and I decided to paint the nursery. Everything was going great and we had one wall left to paint when I lost my balance and fell on the vacuum cleaner. My leg was cut and bruised, I hit the table and sent the paint flying. The carpet was ruined, the lamp was broken and I was extremely worried about the baby. We decided to stop for the night and I called my doctor to see if they thought I should be seen. He said the baby was likely fine and to monitor myself for a couple hours to make sure I had no bleeding or cramping and to make sure I could feel Max move. I ended up being ok but it definitely was scary! Over the next couple weeks my belly grew, Max started moving more and more and I was getting ready to meet my little boy! At the end of January, my family threw a baby shower for me that was so nice. It was at my sister’s house and we got many of the big items we had on our registry. We ended up getting a snow storm that day so some people couldn’t make it and some had to leave early. It was still a lot of fun and we were so appreciative of our families putting in the effort to plan it and for all the gifts we received! Hailey was a huge help and always made sure everything went perfectly. The weeks following the shower were busy putting stuff together and finishing Max’s room. I started to get very uncomfortable and had a lot of back pain and leg cramps. I was waking up 2-3 times a night in pain or to use the bathroom so I was pretty exhausted most days. By 33 weeks I was ready to have Max but I knew I had to stick it out for 6 more weeks! Every minute, every pain, every struggle was worth it to meet this little guy and I would do anything I could to get through this pregnancy until it was that time! That same week I started having dystonia symptoms on my right side. I grabbed my DBS programmer and tried to change my settings but I got an alert that the battery was dead. I started to panic. I couldn’t have this surgery until after Max was born so I wasn’t sure what I was going to do. Jim was leaving in a week to go to Buffalo,NY for training for his new job and I was just a mess with anxiety about everything! I finally made a plan to go to New York when jim got back to get Botox in both hands and meet with the surgeon to discuss the plan for a new battery. I felt good about this plan and the Botox would help buy me some time so I could hold Max when he was born! The Thursday before Jim was about to leave for Buffalo, we spent the day together and after lunch I started having some pain on my right side. I didn’t really think much of it and just tried to relax a little to see if it would go away. Hailey and Cody got off the bus and I was trying to talk to them and plan our night to go to Hailey’s basketball awards ceremony when the pain started to get worse and worse. Jim had gone in to the office to do a zoom call for work and I was trying to figure out what the pain could be and what I was going to do about it. I don’t often panic about pain but this one scared me. Because it was a Thursday I knew the kids were with me all night and their dad would be on call but I didn’t know what else to do so I asked him if he could take them for the night. He said he would but I had to drive them to him so I told jim that I was driving the kids over and would be back soon to go to the hospital. I was about 5 minutes from Ryan’s house when I started throwing up in my car. Hailey was scared and telling me to pull over but I couldn’t because of where I was. Cody was in the back seat trying to find me a bag. Eventually, I found a side road to pull down, threw up and tried to clean myself up as best as I could. Hailey had called jim and he immediately got in his car to come help us. I ended up telling him not to bother because by this point I was back in the drivers seat and dropping the kids off. So he headed home, I called the doctor and met Jim about 10 minutes later. I had asked the doctor on the phone if I should go to the ER or labor and delivery and she said L&D, so I changed, took a shower and off we went as fast as we could to try to find me some relief. We got to the hospital fairly quickly and they took me into a room right away. I put a Johnny on and they hooked me up to the monitors. Of course, because it was the evening, max was a wild man and moving so much they couldn’t get him to stay on the monitor. I wasn’t having any contractions so they confirmed I wasn’t in active labor but no one knew what the pain was. I was so uncomfortable I just kept tossing and turning and trying to find a position I could lay in but everything hurt. They took my blood pressure several times and it was slightly elevated but nothing crazy. They did an ultrasound of the baby and said he looked great but they couldn’t do one of my gallbladder until I hadn’t had food in 8 hours. So finally around 10 they did another ultrasound of my gallbladder and said it looked ok. No one really knew what was going on and everyone expected I would go home that night, but I was still having excruciating pain. They were waiting on one more test before making a plan and that was to test my urine. Within an hour it came back that there was protein in my urine and suddenly everything changed. The doctor came back in and said with elevated blood pressures, severe pain and protein in my urine, I was diagnosed with preeclampsia. This diagnosis always scared me but I never thought I would get it. It’s just one of those things you read about but think, oh that will never happen to me. But it did. It was happening… to me. And I was scared to death. The doctor sat down to go over everything that would happen in the next couple days. She explained that with preeclampsia we would likely be delivering within the week. The plan was to monitor me for 48 hours in the hospital and give Max three steroid shots to help his lungs develop. Jim was having some anxiety because he was still supposed to go to NY and I was getting texts that no one could get Cody on the bus the next day. I don’t know why but I asked the doctor if I could just go home for the night and come back the next day but obviously the answer was no way. We were just going to have to make the best of it. Jim went home to get some stuff to have for the next couple days and I called my mom and dad at 1130 at night to explain what was going on. They offered to get Cody on the bus for me and told me they would help as much as possible but my mom was scheduled for surgery the next day! I felt so thankful for my parents at that moment, even on a surgery day they were at my house at 7am to help. The saying “it takes a village” was about to come out because life was about to get a lot more crazy. The doctor started me on magnesium sulfate to prevent seizures and I had a rough night after that. I couldn’t get comfortable because of the pain and I was up all night throwing up. I had to stay on the monitor all night so every time I moved to get comfortable the nurses would have to come in and reposition it. Thank god I had Jim with me all night because that was one of the hardest nights I had ever had. I felt so bad for Jim because his night was pretty rough too and the sleeping situation for him was horrible. But he still stuck by me through it all even when he was uncomfortable. The next morning, someone from Maternal Fetal Medicine came in and woke me up. She seemed like she was in a hurry and I wasn’t sure if that was because of her schedule or because of my health. She explained that she was bringing me to get an ultrasound to measure the baby and make sure he looked healthy. Jim was half asleep and asked if he should come and I immediately said yes! We were unaware of what was going to happen next but I needed him with me. They pushed me in a wheelchair across the hall and helped me get into a bed to start the ultrasound. Suddenly Max’s little profile was up on the screen and although still in pain, I couldn’t help but smile as I stared as his little button nose and I just couldn’t wait to meet him. They did all their measurements and told us that he weighed a little over 6lbs. For not even being 35 weeks, this seemed like a really good size. They said he was in the 78th percentile and looked very healthy… but he was breech. I suspected this for a while because every appointment I went to they couldn’t tell what position he was in but everyone told me not to be concerned until 36 weeks. They had me sit up in the ultrasound room and wait for the doctor to come in to go over everything. She came walking in and now thinking back on it this whole part seems like a dream. I can picture exactly what the doctor looked like and what she was wearing but it doesn’t seem real. She acted so calm as she looked at both Jim and I and said “with all your symptoms, I think it’s time to deliver.” I didn’t really know what she meant as far as a timeline but I looked at her confused and just said “today??” And she said yes, I will look over your ultrasound and we will probably induce you soon. I told her the baby was breech and she said “then we will do a c section … probably before noon”. Then she left the room. Jim And I burst into tears and just hugged each other, knowing that was going to be the day we would meet our son but also because of fear. What was happening with my body? Would I be ok? Would Max be ok? He was so early and I was so scared. They pushed me back into my room and said the doctor would be in to discuss the c section and everything I needed to know. I tossed and turned for what seemed like hours before the doctor finally came in, explained the surgery and said see you in the OR soon! It happened fast but yet it seemed so slow at the same time. I got back into the wheelchair and prepared myself quickly to go have a baby. They asked Jim to wait in the room until I got the epidural and I was all prepped and then they would be back to get him. I put on my surgical cap, said a quick goodbye to Jim and was wheeled into the OR. I sat on the side of the bed while they gave me the epidural and the nurse stood in front of me to help hold me up and also keep me from freaking out. I was more nervous about a needle going into my back than anything else at that point. Suddenly, before I even had time to think about it my legs started to get hot. Then I couldn’t feel them. I never actually felt anything in my back, it was so weird. The nurse and all the doctors surrounding me lifted my legs up onto the table and then secured my arms out to each side. I was laying there completely with it, unlike any surgery I had ever had but I couldn’t feel anything below my waist, and the pain in my side had completely gone away so it was actually a relief. But then I started to get nauseous and I was a little nervous since I was laying flat on my back. The nurses started waving alcohol wipes under my nose, hoping that the smell from them would make me feel less nauseous. But the smell actually made me throw up. The nurse held a blue bag next to my mouth to throw up into but it was nearly impossible. Suddenly the doctor standing behind me started suctioning my mouth out and within a minute or two I felt completely fine. I laid there waiting for Jim to come in as I thought about what was happening. I was seconds away from meeting my boy and I wondered how little he would be, how much hair and what color and mostly I just hoped and prayed he would be healthy. The time seemed like it was going by so slow. Jim finally came in and came up and sat next to my head while the doctors made a small incision and started the process to take Max out. I could feel them pulling and could tell my body was rocking back and forth but I felt no pain. It was probably only a couple minutes but it seemed like a lifetime as I waited impatiently to hear him cry. Then I heard it. He was crying and I felt so relieved. The tears ran down my cheeks as I waited to see his beautiful face. I could see Jim staring at him and although he had a mask on I could see in his eyes how big his smile was. That was the happiest moment we’ve ever experienced together and both of us were so in love with him already. The doctor tried to show me Max but because of all the drapes hanging, I didn’t get to see him. I sat there and cried and told Jim to go look at him. There was a team of doctors and nurses from the nicu in there looking him over and they said he would need to go there for some time but he was breathing on his own and everyone said he was very blonde and cute. The worst feeling was laying there on the bed, unable to move, knowing my baby was out and I couldn’t hold him or see him. Finally, the doctor wrapped him up and brought him over to my chest. He had a hat on so I didn’t get to see his blonde hair but the first thing I noticed were his perfect little lips. They held him on me for a couple minutes while I kissed his cheeks, told him I loved him and cried tears of joy knowing he was ok. They had to take him quickly up to the nicu to check him out so while they finished stitching me back up, I sent Jim with Max so he could make sure our little guy was ok. Then I sat in my room and waited for Jim to return to tell me how well he was doing. I had to continue taking the magnesium sulfate for 24 hours and it took me a little bit to get up and walk so the first night after delivery was a bit tough. The nurses pushed me up to the nicu to see Max later that night but I had to go in the bed because I was unable to walk yet. The whole night is a blur but I do remember not being able to see him very good because the room was so small and the bed was so big. I did get some reassurance that he was doing ok though and that helped me. I slept pretty good that night and the next day was able to get up a couple times. I also got to go see Max a couple times in a wheelchair. His blonde hair was the cutest thing I had ever seen and he made the cutest faces. Every time Jim talked to him he would immediately open his eyes and look right at him. I could tell he recognized his voice and he seemed so comfortable and reactive to him right from the beginning. It was my favorite thing to watch. Having a baby was something Jim wanted for a long time and to see him in that moment just brought tears to my eyes. I had never seen him so happy in the whole time I’ve known him. I knew right away he was going to be an amazing dad to Max, and that Max would always look up to him. Saturday was a bit hectic. We had Jim’s mom and sister visit and later in the day Hailey and Cody. It was so nice to see everyone but Max wasn’t quite ready for visitors. They only allow the mom & dad in the nicu so everyone just came to see Jim & I. Saturday afternoon I was finally off the magnesium and immediately started feeling more like myself. I no longer needed my blood pressure checked every hour so I had a little more freedom and got a little more rest. On Sunday the pain came back in my side and I had a lot of back pain. They ended up giving me some pain medicine that seemed to help and on Monday I was discharged. Monday was the hardest day for me. We did stay with Max until later in the day but then we had to go home without him. We made a plan for the week and every day I was at the hospital for the whole time the kids were in school. On the nights they were with us, I went during the day and jim went to be with him at night. It worked out pretty good but it was still upsetting that I couldn’t bring him home and just be with him all the time. Hailey and Cody were also so excited to meet him they were going crazy! What I have learned through this whole journey is that you need to have a loving supportive spouse to help you through it, someone who wants it as much as you do, someone who fights like you fight to make it happen and would do anything and everything to make those dreams come true. I learned that you cannot give up and if one way doesn’t work… you find another way. I never thought I would go through IVF to have a baby, I never thought I would have chemical or ectopic pregnancies. I never thought I would have preeclampsia and deliver at 34.5 weeks. I never thought I would have a c section. I never thought I would experience the kind of emotions that I did throughout this whole thing but in the end, the happiness this little boy has brought me was so worth the wait. He was worth every test, every procedure, every medication, every hard day. He was worth the weight gain, the pain, the emotional days and nights that I just sat up wishing for him to be here. He was worth every single minute that I put into bringing him into this world, every tear I cried when I didn’t think it would happen, and the last scary week of my pregnancy when I didn’t know what would happen. We hoped for him for 5 years and to sit here now and look at his smiling little face just doesn’t seem real, he has changed our lives and we are so incredibly thankful and happy to be welcoming him into our family. The next few days were some of the most emotional days I’ve ever experienced. We spent the weekend getting our house ready to bring Max home, thankfully with the help from family. I had a rough weekend because I didn’t feel like I was with Max enough and I tried to make time for everyone but it was nearly impossible. By Sunday night I pretty much just cried about everything. I know I was driving everyone crazy because unless you’ve had a baby, no one really understands the emotions and hormones that come with it. Sometimes it’s just too much to handle. I enjoy making everyone happy and I wasn’t feeling like I could do that because I was focused on Max and it broke my heart that I couldn’t be with all three of my kids at the same time. Monday morning I went to the hospital with everything I needed to bring Max home. The night before we were told he was ready to go so we were prepared. When I walked into his room the nurse practitioner was there and said his oxygen level had been drifting and we may not be going home. She said it had been going down to the high 80’s and it was there for 10% of the time in the last 12 hours. We figured out this was from reflux and I was told to hold him upright for 20 minutes after a feed to prevent this from happening and he seemed to do ok the rest of the day so they discharged him. By noon we were ready to go! He ate, we got our discharge papers and waited for Jim to come pick us up! I couldn’t wait to bring him home and to introduce him to everyone in the family… especially Hailey and Cody. We brought him home and Hailey and Cody got to meet him that afternoon. It was so nice to have everyone home together. We settled in for the night and got ready for a week of meeting everyone in the family! I had a dream for a long time to have another baby, it took longer than I wanted it to and there were so many hard days but now that I can look in the eyes of my baby Maxwell, watch Hailey and Cody smile when they see him and see Jim with his little boy, I can honestly say I couldn’t be happier or proud of my little family. Max was certainly worth the wait and I couldn’t imagine my life without him.

Why I walk

2023-04-05T09:04:00.003-04:00

For some reason I don’t remember a lot about my childhood. But, I remember being sick a lot. I remember when my friends were outside playing, I was sometimes laying on the couch with a nauseating headache and a tickle in my throat. I remember even when I felt ok I still had a cough and when my mom would bring me out in public everyone would stare at me and be afraid they would get it. Nothing I had was ever contagious though. I was tested for whooping cough more than once and it was never positive but I still had to be out of school for days to wait for the results. I remember when I was in second grade I had to have an MRI of my brain because my headaches were so bad. I used to tell my mom it felt like there were marbles rolling around in there or someone inside my head with a hammer. My mom and dad tried everything to help me, bringing me to many doctors and even health food stores to find out I had a sensitivity to dairy.

When I was 12 I started having different symptoms, mostly in my shoulders. I dislocated my shoulder for the first time at cheerleading practice. I iced it, put a sling on and thought I’d be back practicing the next day. Little did I know this would be the start of a living nightmare.

After many ER visits, X-rays, MRI’s, bone scans, 6 surgeries and physical therapy over the next ten years, I was finally diagnosed with dystonia. We’ll never know if my sicknesses throughout my life were caused from dystonia but I have a feeling they were. I’ve had neck pain and headaches my whole life and besides falling and bumping my chin when was really young, no one has figured out why I’ve had this pain. The cough, well we’ll never know but I sometimes wonder if I had a form of dystonia called dysphonia. It has gotten better though with having my tonsils out and growing so I’m not sure.

In 2011 I had a deep brain stimulater placed that changed my life. Unfortunately over time it broke and I had to have it redone. This time, it hasn’t been as successful. I get Botox every 3 months that seems to help with my hand but my left foot hasn’t been straight in over a year. This has made walking hard, sore legs and feet and part of the reason why I have gained weight.

I try to stay positive and although my dbs isn’t working, I constantly try new things to help and try to find new doctors that might have an answer.

I know most of you already know my story but the reason I’m sharing this again is because I so badly want a cure for dystonia. This story is why I put the effort in year after year to hold a walk. I’m not doing it for fun or to beg people for money. This walk has never gotten as big as I want it to but every year when I mail a check into the Dystonia medical research foundation, I know I’ve done a small part in raising money for research. And even if there’s no cure found in my lifetime, I hope I can help at least one person get diagnosed and treated sooner than I did. I share my story so when people have odd symptoms that no one can figure out they can keep dystonia in the back of their minds and get help.

I hope my story encourages people to fight.

If you are interested in walking, donating, sponsoring or even just telling a friend about the dystance 4 Dystonia walk please click the link below. Feel free to email me with any questions. I can’t thank you enough for all your love and support, the walk would not be successful without all of you.

Asleeper14@yahoo.com

https://dystonia-foundation.org/get-involved/events/nashua-donate/?fbclid=IwAR2p4jsDjvpWj1-cYcViDDXxnkrro19NJqYk1t4ujgExtVnaCoum89SweEg&mibextid=Zxz2cZ

February- rare disease month!

2023-02-01T14:50:00.003-05:00

February is rare disease month and although dystonia and 22Q are not diseases they are both rare “disorders”. So I figured now would be a good time to update you all on me & Cody (and the rest of my family)!

This morning, as I made my way to target, I could feel my head pulling to the left. This hasn’t happened for a long time but as the pain started I knew exactly what was happening. By the time I got to target, my neck was in a complete spasm and I was unable to straighten my head. I sat in the parking lot for about 20 minutes as I waited for it to pass. It brought me back to before I had kids when the same thing happened in a Marshall’s parking lot and I had to call my mom to come help me.

The last year has been pretty tough with my dystonia. My DBS doesn’t really work anymore so I take frequent trips to Albany to get Botox in my hand, foot and neck. It hasn’t been helping with my foot but it definitely relaxes my hand. Unfortunately it also makes my arm extremely weak and painful and I can’t really use it at all.

Last weekend, while packing up leftovers at a restaurant I spilled an entire bowl of pasta on Hailey’s legs because I couldn’t hold the to go container with my left hand. I find myself getting emotional when these things happen, mostly out of frustration.

I don’t really know what my next steps are, my surgeon moved to Florida so I’m currently waiting for a new one to take her place. Honestly though, I don’t know that there’s anything that can be done. I don’t think I’d do the surgery again, especially after last time. So I’m just trying to make the best of it and hope things don’t get much worse.

Other than the Dystonia, life has been hectic but good. Hailey & Cody are both playing basketball so Jim and I spend most weekends watching their games. They have both improved so much and Hailey got picked to be on the all star team this year! We can’t wait to watch her tournaments. They are both doing excellent in school and this week we will be celebrating Cody turning TEN! I don’t know how that happened!

He has had a tough year with illnesses but he’s still his happy self most days. He was diagnosed with recurrent juvenile parotitis so his face swells a lot. This sometimes is accompanied by a fever or vomiting. We will be getting a second opinion at children’s hospital in April. He also has had quite a few illnesses and has missed too much school this year. He had an immune work up and his immune system is weak, similar to when he was a baby. They have recommended a vaccine to help with this so he should be getting that soon. He will be going in for surgery in the next month or so to have some work done on his teeth. Because of his 22Q, his enamel is weak and he grinds his teeth so he has a lot of damage. We are hoping his adult teeth are much stronger. On days when Cody is not sick, he is the happiest kid you’ll ever meet and I can’t wait to see what great things he does this year!

Hailey is growing up too fast and has her first boyfriend this year. She is 12 going on 25 and as sad as it is that she’s growing up so fast, she is so fun to be around and talk to. She is the kindest, sweetest girl (except when she’s on the basketball court haha). I love to watch her do the things she loves.

Jim is doing well and as always is there for me every single day. He is doing great in his job and has big plans for this year. I can’t thank him enough for coming into my life and changing it for the better. This is the first time in many years I feel like I can be myself and be confident in the things I do. He pushes me to succeed and is helping me reach many goals.

We have started to plan the dystance 4 Dystonia event and it will take play on May 21st at mine falls park in Nashua. Unfortunately, this year it will not be a timed 5K. If you would like to sign up please click the link below and if you are interested in becoming a sponsor or donating to the raffle table, please let Jim or I know. Thank you for your support and we hope to see you there!

https://dystonia-foundation.org/product/nashua-walk-run/?fbclid=IwAR1pvYheFc1tcPZwPePMfIQKZwyIVf2OrUY3qwxivri2nF94ou4gm0R7tXs&mibextid=Zxz2cZ

Dystonia awareness month

2022-09-08T13:33:00.003-04:00

Dystonia awareness month

My journey likely started long before 1998 but that year was when I dislocated my shoulder for the first time. After many doctors, misdiagnoses and people telling me I was making it up I was sent to Children’s hospital in Boston and in 2000 had my first shoulder surgery for “instability”. By 2008 I had had 6 shoulder surgeries. That year, after the last surgery I lost use of my left hand. Many more doctors and tests later I was finally diagnosed with dystonia in 2009. After many trials of Botox, medications, hand splints and therapy we started to discuss the possibility of deep brain stimulation. By this point it had traveled to my feet and my neck and I would sometimes need my mom to massage a cramp out of my neck in a parking lot so that I could drive home.

In 2011, I had my first DBS placed. My hand opened for the first time in 3.5 years in the OR and we all had hope that it was successful. It worked great at first but 2 months after the surgery my head got infected. After 6 weeks of antibiotics I had to have it removed. In December that same year, I had a new one put in and it was successful for 7 years.

After 7 years my symptoms returned pretty badly and we went through the same thing I did in 2009. Trying to find a doctor to help me was very stressful since mine stopped communicating with me and my surgeon moved to New York. Every doctor told me something different but it wasn’t until I went to my original surgeon that we figured out my DBS was broken. Because it took so long to figure this out, I had permanent damage to my hand. I ended up needing my DBS replaced that year then 5 hand surgeries to try to fix my damaged fingers.

At the moment, my DBS isn’t working 100% and I travel to Albany to get Botox in my hand and foot every 2-3 months. Stress makes it a lot worse so when I’m feeling down or worried I just grab my hand brace and get ready to fight the muscle spasms.

I know most of you know my story so I’m sorry about the repetition but my goal here is to spread awareness to at least one person who doesn’t know what dystonia is. My hope is that if someone is experiencing the same symptoms as me they can reach out to me and I can help them. My wish is that if you have a similar story as mine and you run into doctors that treat you like you’re stupid and have too big of an ego to help you, you can stand up to them and tell them to screw off. I have been chasing doctors my whole life, doing my own research and searching for relief. People who don’t have dystonia don’t know the amount of pain it causes and I don’t try to explain it but all I want you to know is that there is help and there are doctors out there that know what they’re doing. And if all you need is someone to vent to about your pain and frustration… please reach out to me because I do know what it’s like.

Fear

2022-05-24T14:12:00.005-04:00

When I had my DBS placed the first time, I was scared. I didn’t know what to expect, I was just starting out my life as a mother and I was scared. I had never shaved my head, I had never been awake during a surgery and I really didn’t know if it was going to help me or not. After the surgery, I was excited to hear that my hand opened in the OR. I had hopes that my life was getting better!

When my head got infected I was even more scared. Going home with IV antibiotics for 6 weeks was the scariest thing i had ever dealt with. The headaches were nauseating and it was truly a scary time. Then they had to take out it out which was even more scary because my dystonia was going to get bad again.

When I found out my insurance company wouldn’t cover it to be done again you can imagine how scared I was. But we fought it, I had it done again and it worked!

7 years later, I was more scared than ever! I had recently got divorced and was now dating an amazing guy. I was so scared for him to see how bad my dystonia was getting. I was scared to go to the doctor and scared when I was told my DBS was broken.

The third time I had my DBS surgery I had nightmares for weeks that I was going to die. I felt sick to my stomach going into the OR and I laid there crying.. awake.. as they shaved my head AGAIN.

I was scared when I woke up but relieved to be alive. I was positive because I thought the surgery was successful. Little did I know.. it wasn’t.

The amount of scar tissue from having this surgery so many times is pretty significant. The DBS had to cemented in and now, 2 years later it’s hardly working at all. This might be the most scared I’ve been. I can barely walk and the Botox isn’t working for my foot anymore. I will not have DBS surgery again and there’s really no other options.

The day has come that I truly want the whole world to know about dystonia, spread awareness and help me raise funds for research when I host my 5k every year. I need a cure. I don’t just want it anymore.. I need it.

Frustration

2022-03-31T09:29:00.002-04:00

Some people say just wake up in the morning and decide to have a good day. Sometimes this is true. Instead of moping and complaining about little things, you can choose to look at life differently, accept the imperfections and just “be happy”. I do think there are many things, though, that make it hard to force yourself to always be in a good mood. Getting rest… sometimes it’s hard because life is busy but sleeping a proper amount is so important for your health and happiness. Our diets also impact how we feel. Healthy eating will give you more energy, less bloating and overall just make you feel better. But, the number one thing that affects my mood is pain. Every single day I try to push through it, I try to “live” like I would if the pain wasn’t there. When I do this, I end up taking 2-3 days off from doing anything because that one day I felt motivated, I did too much. The frustration I have is so intense it sometimes makes me angry and in a bad mood. I want to jog, I want to work, I want to clean, I want to play catch with my kids, I want to cook. In my head, I’m so motivated to do these things but when the time comes to do it, I just want to cry.

The most frustrating thing is it shouldn’t be like this. I have had DBS surgery THREE times. Why doesn’t it work? Why won’t it help me? Every day I realize how much my pain is also affecting those around me. I am no fun to be around and I’m trying so hard to just change the way I look at life. This is just how it’s going to be and I need to learn to live with it.

I have had dystonia for a large part of my life. I wasn’t diagnosed until I was 22 but I believe what I experienced before that was related. I found out shortly after being diagnosed that there is no cure, so I have to just try to treat the pain and symptoms as they come. I’ve tried every medication, Botox injections and DBS. I’ve had relief, but I still have dystonia.

It is my mission to share with everyone I know what dystonia is so more people are aware and more research can be done. This is why I host a walk every year, and why this year I made it a timed 5K run to hopefully attract more people. Every dollar raised goes towards research. And I hope someday a cure is found so no one else has to deal with this.

The run/walk will be held at mine falls park in Nashua NH and there are many ways for you to help!

Register to walk/run (timing & tshirt included if registered by 4/25)
Make a donation (this is good for people who want to help but cannot attend)
Become a sponsor (perfect for companies, your company name will be on the tshirt and/or banner, you will get admission to do the run and you’ll get a shirt)
If you wish to help but cannot make any donations, please share with your friends. You never know who might want to come to a family fun event!

There will be many raffles and kids are welcome! Click the link below for more information.

https://dystonia-foundation.org/product/nashua-walk-run/?fbclid=IwAR1igKEYDQ6qVlb_kpjUwzDQedC_05g36e23jHYbE4b0PnGoGn1E7QAxetA

A new year

2022-01-20T10:20:00.001-05:00

2021 came to an end very quickly filled with a lot of pressure and stress. I quietly prayed that 2022 would start off better and be “my year” filled with good luck, good health and less stress. I know that on January first people have this thinking that life is just magically going to change because it’s a new year. I know it’s an imaginary line that doesn’t really have anything different about it as far as life changes as any other month. But I still always think it.

January started with my dystonia pretty bad, my finger infected and both my doctors on vacation. Then my cat started having a seizure.

A few days into the month, my daughter tested positive for Covid. Thankfully her symptoms were mild but her and her brother were told to quarantine for 10 days. So, we were stuck in the house playing cards, building legos, eating snacks and working on homework. It got old fast. It seemed like nothing was going right.

Then my husband started getting sick. Every day was worse and new symptoms kept popping up. He took 3 at home Covid tests that were all negative but we were still worried. As time went on and his symptoms got worse, I started to really panic. He was getting so sick I couldn’t have a conversation with him. I begged and begged him to go to the hospital and finally on Sunday he did. He was diagnosed with severe pneumonia in both lungs. These have been the scariest days I’ve ever experienced in my life and I can’t imagine what it’s like for him. Watching him get so winded is so heart breaking and leaving him just to go to the store is the hardest thing in the world to do. He’s now taking antibiotics and resting a lot. He seems to be getting a tiny bit better each day so hopefully with time, he’s back to himself very soon.

Although the days have been tough, and I’ve cried more in the last month than I have in my life, I have also learned a lot.

I have realized that the love I feel towards this man is something I can’t put into words. It’s a kind of love I’ve never experienced and one I searched for my whole life. I’ve learned over these last couple weeks that the little things people get mad about aren’t really a big deal. The most important things in life are good health, family and love. Everything else comes second. Jim has changed my whole life, how I see things, how I feel about other people and mostly how I feel about myself. He has supported me in many ways, taken care of me and pushed me to do anything and everything that makes me happy. He always tells me, if it doesn’t make me happy it’s not worth it. It is my time now to take care of him and treat him the way he’s always treated me since the day I met him.

“Love isn’t always perfect. It isn’t a fairytale or storybook. And it doesn’t always come easy. Love is overcoming obstacles, facing challenges, fighting to be together, holding on and never letting go. It is a short word, easy to spell, difficult to define and impossible to live without. Love is work, but most of all, love is realizing that that every hour, every minute, and every second was worth it because you did it together.”

Botox!

2021-12-09T19:05:00.001-05:00

I’ve been getting Botox for about 12 years. It took about 10 years and several doctors before it worked. I’m convinced it’s the amount and place it’s given. Also, female doctors are just better and I finally found one!

The problem I was facing is that it wears off after about two months but I could only get it every three months because of insurance reasons. So I would always go a month with my hand and foot curled in before I could get relief again. It’s so frustrating and that month is usually pretty hard on me.

Over the last couple years I have been trying to fix the damage that was done to my hand after it was clenched for so long. After my last surgery, my Botox wore off and my hand curled into a fist. I found out this week after having my fifth hand surgery that everything done last time had come undone. I’m unsure if this was due to the Botox wearing off or something the doctor did or didn’t do. I couldn’t be happier or more thankful for my neurologist, who has always done everything possible to help me and for finding a way for me to get an extra dose of Botox this time so hopefully my hand stays open long enough to heal. I am already feeling some dystonic symptoms in my foot so chances are if I didn’t get the Botox my hand would be curling in less than a week after surgery.

Everything I do to try to fix this is based on time. I’m always trying to schedule things around when it will curl back in. Stress makes my symptoms worse so I’m just trying not to get too stressed about Christmas to make things worse. Managing stress is the hardest part. Sometimes I get stressed out just thinking of my symptoms coming back, which is never helpful. My hope is that this will be my last surgery & I’m hoping my dbs starts working soon so I can stop relying on Botox.

Update on dystonia

2021-09-15T09:24:00.004-04:00

The first thing I think of in the morning as I’m getting out of bed is if my dystonia is going to act up or not that day. Especially around the two month mark after I receive Botox. Every three months I get botox injections in my arm and leg and sometimes in my neck. I’ve been trying botox for 12 years with no luck but for some reason it works for me now. The problem is my insurance company will only cover it every 12 weeks and it usually stops working after 8, so I go about a month with symptoms before I can get it again.

My hand is starting to close again and giving me a lot of problems. I can’t use it for most things even when it’s open and it gets very frustrating. I drop something almost every day because of lack of strength and popping in my fingers. It’s deformed looking and hurts all day every day. I mostly have gotten used to just doing everything with my right hand but some days it just gets to me and I want it to be normal. I got a second opinion (more like 10th) with a different hand surgeon to see if there’s anything more I could do to make it better than it is right now. I have three options. The first, leave it how it is and hope that it just gets better on its own over the years. The second, have my fingers fused, which would mean I’d never be able to straighten them or make a fist again, they would just be in a fixed position. Or the last option is to have a surgery called a Zancolli lasso. This procedure would likely help the function of my hand but, as always, they are unsure how much it would help and because this would be my fifth hand surgery there is a lot of scar tissue in there which would make it difficult to perfect.

I understand my hand will never be normal. I understand that dystonia destroyed it and it will always be ugly. But I don’t want to give up yet. I don’t want to accept the way it is because I can’t do everyday things. I can’t pick up a drink, I can’t braid Haileys hair, I can’t play softball or make things with my cricut. I can’t carry things or hold Codys hand. I just want to be able to use it.

So, I don’t know what the answer is or what I’ll do next. I have an appointment in October with my neurologist for botox so I’ll talk to her to see what she thinks. If I do the surgery I will need to do it right after I get a botox injection so my dystonia doesn’t flare up and ruin the surgery.

My foot is starting to turn in again too. It seems like my DBS may never work as well as it did before. It’s so depressing. I was hoping this would be the month I wouldn’t start getting symptoms again and wouldn’t need to still get Botox but over the last week it has started again. Hopefully over time we can get my settings right and see some improvement.

I have been trying to still walk but haven’t been doing as much as I was when I was doing my March for dystonia fundraiser. It was tough over the summer because the kids were home and we were busy having fun! So, I’ve gained back some of the weight I lost but I’m starting back up again and hoping to get back to being fit and healthy! It definitely made me feel better. I just need some motivation!

I’ve been taking some nutrition classes and will soon be registered to help others live a healthy lifestyle! I’m learning so much and can’t wait to get started on helping people!

Well, off I go for a little jog. Thank you all for reading. I appreciate all the support. September is dystonia awareness month so please share my story!

Choose to have a good day

2021-07-29T11:08:00.000-04:00

Every day, you have a new opportunity to change. It’s a new day and it’s up to you to decide if you’re going to be happy or not, if you’re going to work hard and push for something or if you’re going to sit back and feel sorry for yourself. We all experience both of these things at one time or another. Some days i wake up motivated and ready to take on anything that’s thrown at me. Some days I walk ten miles, I drink a lot of water, I’m happy and I don’t let little things bother me. Other days I wake up 18 times over night with a throbbing hand and then finally drag myself out of bed and think of every excuse not to work hard that day. Every little thing frustrates me, I drink coffee and monster energy drinks all day hoping at some point I snap out it, but most times I end up crying, dealing with the bad day and eventually going to bed hoping for the next day to be better.

Dystonia is obviously a big part of my life and most of the time when I’m not feeling great it’s because of the dystonia. But I’m more than that. I am a wife, a mother, a daughter, a sister, a friend. I try my hardest to be good at these roles and not let dystonia define me.

The problems I’ve had lately with my hand are a result of dystonia but it’s not the Dystonia that’s affecting it now. I believe I have some nerve damage and I think it’s safe to say I’ll never use my hand again. I try not to let it bother me but every day I’m reminded of this problem. I go to put the dishes away and drop a plate. I go to do my daughters hair and my fingers don’t move. I go to the drive thru at Dunkin’ Donuts and drop my coffee all over me and my car because My fingers lock. Sure, I’ve learned over the years some tricks to use my other hand and most of the time i do ok. But, some days I just want my hand to work. I just want the pain to go away. Sometimes I want to scream and just tell someone that IT SUCKS.

I realize most people in my life are sick of hearing about it so I try to hold back with my complaining. But this is my blog so I’m going to complain and if you don’t want to read it.. you don’t have to! 😊

I don’t know what the next step is. A new doctor? Medication? Physical therapy? More surgery? Nothing? I honestly don’t know what to do. But I’m working on it. And while I work on it.. I’m also still working on getting to 500 miles, I’m working on a nutrition degree and losing 25 more pounds. I know it will be hard but I also know that I’m capable of doing it, and so I will!

So, today I’m choosing to have a good day, I’m choosing happiness and I’m choosing motivation and success.

Hopeful but scared

2021-06-10T17:28:00.001-04:00

What do you do when you have so many dreams, so much motivation for a healthy life, so many goals and every day there’s something stopping you from succeeding? I’m not too lazy, too tired, or unmotivated… my body won’t let me move. The last couple days have been excruciating.

As most of you know, my dystonia mainly affects my left side. My left hand and my left foot have always been the worst so when they act up, I’m not usually surprised or worried. This is different. My back is so bad, there is no position I’m comfortable in so I have to keep moving. When I sit, it feels like my back is crushing the top of my butt. My whole right leg throbs, the top of my foot aches and my right hand goes in and out of a fist. Mg right arm feels so weak it’s hard to lift anything. My abdominal muscles hurt and I can never tell if it’s anxiety, hunger, dystonia, or nausea because it sort of feels like all of that combined. For the most part, I can deal with the pain but I can’t deal with not being able to do every day things. I felt so good working out and when I miss days of walking, I just don’t feel as good. I don’t know why this is happening but I hope it’s temporary and I hope my DBS starts working soon. I am ready for a fun, healthy and active summer!

Thank you

2021-03-29T13:43:00.004-04:00

I didn’t think I could do it. I almost backed out of doing my walking fundraiser because I had absolutely no faith in myself to succeed. Jim pushed me because he knew it meant a lot to me. I decided to do it, even if no one donated and I just started walking a couple miles a day I could just do it for myself, to help me stay motivated to stay active. I made the Facebook page and started inviting people to watch my progress and within 2 weeks had reached my goal of $1000 raised. I’ve walked 68 miles in two weeks and this morning I actually jogged 3 miles. Who am I? I barely recognize myself, I am not a runner and I have never been a runner. I am proud of what I’ve accomplished but I couldn’t have done any of it without all of you, and especially without my husband.

The amount of people who have shared my story, commented and donated has truly been amazing. I am doing this because I am tired of living with dystonia and just want a cure. I am also doing this to show anyone and everyone that has dystonia or any kind of disability that you can fight and work hard and you can succeed in so many things.

I spent a lot of years depressed and feeing sorry for myself. It was until recently that I got tired of thinking that way. The more depressed I was, the worse my symptoms were. Living a happy, active and stress free life was the treatment my body so badly needed. I have never felt better than I do right now.

So thank you all for your help in pushing me and supporting me through this journey. I can’t thank you all enough for what you’ve done for me.

Please follow me on Facebook and Instagram at The March to End Dystonia

And to donate a mile please click this link and scroll to the bottom

https://dystonia-foundation.org/friends/amanda-lockhead/

Dystance4dystonia update

2021-02-24T11:09:00.001-05:00

It took me 22 years to get diagnosed with dystonia. 22 years of unexplained pain, several unnecessary surgeries and a whole lot of unknowns. The first time I heard the word “dystonia” I had no idea what it meant and spent days researching it to understand it better. I wished I had known more about it at the time but it took years to fully understand what was happening to my body.

It seemed like it progressed fairly quickly. It started in my shoulders I guess but we didn’t know what it was until my hand curled in. It then moved to my foot and neck and then to my right side. After going through DBS, medications and Botox injections I started to improve. As I got better, all I wanted to do was help other people understand it.

Since 2012, I have had 4 dystonia walks to spread awareness and raise money for the DMRF. I have had great support and have met many people. Last year, we had to cancel the walk because of the pandemic and it looks like we will have to cancel again this year. I can’t just skip it again so I’m looking for ways to still be active, spread awareness and raise money for research to find a cure. I am in the process of planning something with the DMRF and can’t wait to share what I’ll be doing this year!

Thank you all for your support, keep sharing my blog to help me raise awareness!

Dystonia won’t stop me

2021-02-20T14:51:00.003-05:00

My dystonia was getting bad again, I was overweight and unhappy with how I looked. I spent most days feeling sorry for myself and just thinking of every excuse I could to not change. I didn’t have the time to workout or the money to buy healthier foods. I didn’t have the energy to cook good meals and I was in too much pain to get up and do something. I never took the time to think about my own body or my own health and I never thought to change my whole lifestyle.

On New Year’s Eve, I saw a picture of myself that my mom took and was so unhappy with the way I looked that it brought me to tears. That week I started working out every day with videos on YouTube. The week after I joined weight watchers. The week after that we bought a treadmill and I started walking every day. I changed the way I drink my coffee, I stopped drinking soda, and I stopped feeling sorry for myself. I got up and moved and this morning I was down 12lbs since January 6th. I am so happy to say I’m losing weight but what’s more important is the way I feel. I feel so much happier and energetic. I could not have started this and continued if it wasn’t for the support of my family. Jim joined weight watchers with me so it’s been a lot of fun. My kids have also been great with not bugging me while I’m working out and loving all the new meals I’ve been cooking.

My dystonia is still bad some days but I power through the pain and I will not let it stop me. I’ve been going to PT so my hand is getting better and getting Botox every 3 months to help with my hand and foot spasms.

I’m very motivated to keep going, this healthier life has made me feel less bloated, my clothes fit better and I have so much more energy. I have so many goals to aim for and I can’t wait to share them!

Thank you for reading and for all the love & support ❤️

Love & happiness in 2020

2020-11-15T09:41:00.001-05:00

Have you ever watched a movie with a love story and thought that the relationships on them aren’t ever what they appear to be? In real life, love isn’t something that’s easy, or something that makes you so happy it still makes you crazy years after meeting someone. I thought love became a habit overtime, you just become used to each other and go through the motions of each day together.

At the risk of sounding cheesy, I found that movie romance in real life. After 3 years and 3 months I still get butterflies when he texts me. I still watch for him out the window when he’s coming home from work. We still kiss goodnight and say I love you 150 times a day. I look forward to my time with him every single day and never get sick of it. I love the way he looks at me, the way he protects me, treats me and the way he loves me.

I know people get sick of hearing it. A lot of people don’t know how to act around happy couples but I honestly don’t care what anyone thinks. I will go on and on for years about how happy I finally am because it’s nothing I’ve ever experienced. Because of this happiness, Jim and I didn’t want to wait any longer to get married. We had postponed the wedding because of Covid but wanted to make it official now. We’ve both waited our whole lives for each other and decided just a few weeks ago that we would get married now, with just the kids and our parents. It was a perfect day, the weather was gorgeous and unheard of for November in New England! The sun hit the water perfectly behind us and I had the best day becoming Mrs. Lockhead. I feel like the luckiest girl in the world for finding him and I look forward to many happy years.

2020 has been a tough year. The kids not being able to go to school, everything closing down, wearing masks everywhere etc. I’ve tried to make the best of it, and getting married definitely helped that! But there are still struggles that we deal with every day. My DBS stopped working and my symptoms in my hand and foot came back. Luckily, I got Botox and that helped a lot but I have to go back to Albany every 3 months to get it. We are still trying to figure out what’s wrong with it. I had an EEG and it showed the DBS is struggling when ramping up to get to the settings. I’m going to try new settings and if that doesn’t work I will need my battery replaced. Thankfully, that’s a pretty simple surgery.

I’ve also been having a lot of problems with my hand and fingers. They are all hyper extending and a couple fingers lock when I try to bend them. This makes every day tasks very difficult. On December 11th I will be going in for yet another hand surgery. They will be taking a tendon from my toe to wrap around my fingers. I’m really hoping this is the last one.

Remote learning has been tough, the kids only go to school two days a week right now. The thing that scares me the most is that they’re not learning much. I worry about them falling behind and struggling when school starts again. We have enjoyed many extra days together though and I’m very lucky that I work from home so I can help them through this. We’re doing the best we can!

My point here is that 2020 has been a tough year but hard days are so much easier to deal with when you are happy with your life and when you have someone who is there to help you every day ❤️

Fears

2020-08-12T11:54:00.004-04:00

I have had some fears in my life. I was scared to give birth and scared to be a mother. I was scared to get married and scared to get divorced. I was scared to go on a first date and have a new relationship. I was scared to fall in love but once I did I was scared to lose that feeling. I’m scared of being on a bridge in my car. I’m scared of saying no. I’m scared of hurting people. I was scared to have brain surgery and didn’t think I was going to wake up. I have an unrealistic fear of a raccoon attacking me. I’m scared to share my opinion with most people. I’m scared of big crowds and feeling out of place. Im scared of losing the people I love and I’m scared about where I’m going to live. Many of these fears are things I live with every day but don’t talk about. Many of them are things I’m working to get over and live with.

The thing that has scared me the most is dystonia in my abdominal muscles. When my stomach tightens up, I can’t catch my breathe and it’s hard to talk. My biggest fear is that my DBS isn’t working again. I’ve had three DBS systems put in. One got infected and one broke. I will not do this again so if this was doesn’t work I don’t know how I’ll end up.

I’m so thankful for Jim, who has stood by my side every day. He always makes sure I’m ok and takes care of me.

My biggest hope is to make all my symptoms go away before the wedding next year. Maybe these spasms will help me lose weight! (Haha!)

I’m ready to be pain free and spasm free and be able to enjoy every single day with my children, my fiancé and my family. I have an appointment Monday with my neurologist and hoping for the best! ❤️

Before you judge me, make sure you’re perfect

2020-08-05T12:41:00.000-04:00

I’m overweight. I’m not happy about the way I look but I’m happy with my life. Since Covid has attacked and pretty much made everything impossible, I have had a hard time. It started with the homeschooling and all us of trying to adjust. Then being told Cody was doing summer school. He does school on zoom three times a week, speech on zoom three times a week and speech outside of the house twice a week. He hates the zoom meetings and sometimes struggles to sit through it. Hailey gets bored when he’s doing it. I can’t bring them anywhere because they need masks and they’re little and hate them and it’s hot. I don’t have time to go grocery shopping, I don’t have time or motivation to work out. My dystonia is getting worse by the day and I’m pretty much just a fat crippled mess. I’m trying to think positive but it’s especially hard when people are judging your every move. People I don’t even like so I don’t even know why I care. What makes you so perfect? Because your healthy and can work out without being in pain? Because your thin and fit? Well happiness means more to me than that and I am way happier now, even with Covid and bad dystonia days then I ever was before.

My left foot, my left hand and my back are a mess. My foot is turned in so far it feels like my ankle is going to snap and I can’t get a shoe on my foot. So, I’ve been wearing flip flops but it looks ridiculous. I had an adjustment made on my dbs about a month ago and go back in two weeks. Hopefully I can get some relief. She did Botox in my hand and this time might try it in my foot.

Anyway, there’s good stuff too. Hailey has been so good lately and has been making bracelets and raising awareness for dystonia . I am so proud of her. She is almost 10 already and going into 4th grade.

Cody is doing well too! We had a scare last week when his neck started swelling and he was pretty sick. We ended up in the ER but he perked up and they said it was just a virus. He’s doing very well in school and can’t wait to see his friends again. I’m so proud of how hard he has worked through all of this!

Jim and I are super excited to get married next year! Because of Covid, we had to postpone until May but that’s ok with us, as long as the people we love are able to join us! Jim’s job is going great and I’m so proud of all his hard work!

Life is good. I’m enjoying my time with my kids every day but some days have been hard. Mostly with grocery shopping, school at home and getting to doctors appointments.

I will be glad when this is over but for now we’re making the best of it! I’m done letting people bother me when they look me up and down and judge. I am who I am because of what I’ve gone through and there’s no one else I’d rather be!