Rheumatoid Arthritis

Renewing

2018-07-08T07:58:00.001-07:00

It has been a long time since my last post but things are getting active again and I need to keep record of my days. So I'm starting up this blog again. I'm learning what has changed and how to do this on my cell phone. If you visit this page and see an issue I would love it if you let me know. Thanks

Broken bones with RA

2014-01-12T09:20:00.000-08:00

I have oftened wondered what affact RA ia going to have on healing a broken bone. Just my luck, I get to find out 1st hand.

On January 4th. I went to a birthday party with the kids and was sorta talked into skating. Now I have skated before but just got an ankle brace and have issues with my feet, but I still had to try. I was a little wobbly but quickly skating came back and then my 12 year old fell on the right side of me. I did notice fast enough as I was talking with my 15 year old son, teasing him about tring to skate backwords. So I saw the yongest leg and bumped his skate as I lifted my right leg to miss him. I just couldn't balance long enough on the left foot and fell.

Now it wasn't painful when I fell, but moving my arm hurt. Something was off but I continued skating. As time moved on and the swelling set in my arm got worse. I used the arm to stop my self at the wall as I was getting off the floor and it was very painful. My arm would not extend all the way and my fingers were a little numb, this was two hours after the fall. My husband has to take my skates off and get my shoes on. At the hospital we found I have a radial head fracture. They said I have to call the orthopedic surgeon on the 6th, if the bone moves I may need surgery. It was a crazy amount of pain for xrays and getting my arm in a splint.

I was at least able to convince the doctor to let me go to work. I can type and write left handed, just slower. Now my left shoulder likes to go out from over use and it sure is sore...

On Tuesday I was able to see the orthopedic surgeon. A student took off the splint/arm warp. They both explained I had a fracture at the end of the radial head and it was ok to start moving my arm. I could use the arm sling to rest my arm. So I've done what I could including working over time at my day job, which is on the computer thankfully. Quite honestly I haven't used the arm sling unless I was out shopping, because I have my arm resting on something most of the time. I still can't open my arm all the way and it still hurts a lot.

Hopefully things will keep getting better and my RA won't slow down the process too much. I do see a new Rheumatologist on Feb. 28, so I'll just wait and see what he says. Hopefully I can get full use of my arm by then.

Feets, Foots, and Toesy

2013-11-24T11:43:00.000-08:00

Me and my husband

I went to the Podiatrist on Friday. No surprise, he said I complicated. He sure got that 100% right. Good news there is no erosion signs from my RA. Then he used several larger words that I didn’t quiet catch or understand. He explained that when I walk on my right foot I’m actually walking on the right side of my foot. (I’ve been paying more attention and he is right)

I have an appointment on December 6 to have a brace made for my right foot and ankle. They are also making new insert for my shoes. I have insert already but this insert will go almost the whole foot where the ones I have now only do half.

Hopefully this will help reduce the foot pain I go through. Right now I can stand twenty minutes before my feet really start to hurt and soon after that I just have to get off of them. Not a person to allow my issues to stop me, I use my wheelchair at that point to continue on.

The Podiatrist surprised me a little when he asked me if I had handicap tag, which I do have. He told me to keep moving as long I can and hopefully these will help me to walk longer. I have exercises to do as well. I started right away doing the exercises. So far the exercises have made my leg including knee and hip very sore.

As much as I knew the truth ahead of time and I already use a wheelchair at times. It was still a little heart wrenching. It won’t be so bad once I get a motorized cart and a way to load and unload it from the car. Right now my wheelchair is great if the kids are with me as it is hard for my husband to push with his issue. I can’t wheel myself for long and end up hurting my arm and shoulder. Just makes me worry a bit when the kids move out and we realize how much the kids help us.

December 6 is also the next date for my husband’s outpatient surgery. They will be putting shots into the spine of his back trying to get the nerves ending to stop hurting. We have done this once already and he got one whole day of relief but they think that maybe it will give more days each time we do the shots. We are also waiting for an appointment for a neurosurgeon. Hate to think of another back surgery for him, but if it will help it will be worth.

We sure are two peas in a pod.

Possible Biologic pills?

2013-11-17T08:05:00.000-08:00

by meerlap

I'm reading RA article today as I pass some time and see what is new on the market. One article on Web MD talking about if a biologic pill is possiblestuck me funny as I read about what Rheumatoid Arthritis does.

"RA, an autoimmune disease affecting 2 million people, happens when the body engages in friendly fire against its own joints and tissues, causing inflammation, pain, and joint damage"

Friendly Fire now that is a very nicely way to put it.

The article is very encouraging though. I take Orencia. Even with my insurance it would cost me $300 a month. I have 90/10 insurance as well, so I only pay 10 percent after deductible is met. Thankfully Orencia has a program for co-pay helping taking the amount paid down to only $5 a month. Loss of my job would me loss of medical care for myself.

Depending on how long you have followed this blog, I have already done several years without medical. A wonderful toll on my body, but it is what it is.

The article talks about the need for Bilogic Pills. I give myself an injection each week and each week I dread doing it. Sometimes not a big deal and other times I worry if I’m doing it right. I would be happy to sign up for a pill over injections. IV infusions I have tried too. Poor nurses have a hard time starting an IV on me and the cost start around $8,000 per infusion.

Pills would be easier to use, covered more by insurance, and cheaper. I hope we reach this goal soon.

Feeling better

2013-11-10T17:30:00.000-08:00

Thankfully we have moved on from the wonderful stomach bug. That was no fun. I also got a letter in the mail from the old Rheumatologist who informed me I was very anemic and my vitamin D is low. No wonder I was feel so horrid. He wanted to come in for an appointment right away, but he doesn’t know I’m waiting for the new doctor appointment in February. So I started to take Iron, Vitamin D3, and Vitamin C. I feel better so I think things are getting better.

So far the colder weather hasn’t bothered me too much. However I’m finding shopping to be increasingly painful as my feet hurt after about 20 minutes of walking. I also had fun with my muscles in my legs just aching. That’s something new I haven’t had before. I’ve been trying to stretch and rub my legs at night. Sort of hoping whatever the issue is it will fix itself.

All of these wonder issues with many hiding from view. You can’t see when my feet hurt or the pain in legs unless I hobble a little. I’ve gotten pretty at correcting myself as much as possible to straighten out limbs so they don’t look different. I had my left arm stuck for a long time unable to stretch out all the way. Lots of painful therapy visits to fix that, but it also taught me tricks that help me to prevent the arm getting stuck in that position again. So with the exception of issues like my arm the pain is mostly hidden.

I try not to get gas alone because I never know when my hands won’t open the gas cap. Getting groceries is hard. Besides walking many cashiers put too much into a bag. While getting soda 2lts to last awhile, I got six 2lt in the cart when a stocker told me if I took the whole box I would have eight. There is no way I can lift eight 2lt in a box without hurting. I’m not even sure if I could just do it and hurt later.

Now I know this sounds like a whining session but not really. I don’t often get down over the issues, I just find other ways around them. However I really want more people to understand what happens. Not only for me but for other people who have issues that can not be seen.

Picture seeing a mother with two kids you see her get out of her car. Walk to the back of the car and get out a wheelchair. See then sits in the wheelchair and the kids push her. You can’t help but wonder why the poor kids are pushing her.

There really could be lots of reasons. I know firsthand how a hard it is to roll yourself in a wheelchair. If I do my shoulder goes out, becomes very painful to move. Motorized wheelchairs are expensive and then there is added cost for how to transport and store the wheelchair. A solution is the travel scooters. Now these are also expensive starting in $500 range. My concern is the weight of getting them in and out of vehicles without extra costs of more equipment. Or course I am cable of walking just not as much as I want to and I refuse to slow down. So I’m saving up.

Just remember not to judge by the cover.

The wonderful Stomach Bug

2013-10-27T13:17:00.000-07:00

Going around work is the wonderful stomach bug, it may be the stomach flu but no one has seen the doctor to confirm. My co-workers are so nice and wonderful that I have also picked up this illness. It started on Friday the 25th. I woke up sore and just felt off but I pushed to head towards a podiatrist appointment. I never made it. I pulled over once to be sick and then again a 2nd time. Thankfully my husband was with me and drove us home. I’ll now have to wait a month to get another appointment.

My podiatrist appointment is for issues with my feel. I can stand about 45 minutes before my feet start to hurt a lot. Like standing on pins and I have to get off. Since I love to walk, hike, and go to amusement parks this is another obstacle standing in my way. Thankfully I do have a manual wheelchair but my husband health no longer allows him to push me and my arms are unable to do it myself for long. If I try to wheel myself my shoulder will go out. I’m not sure what the doctor’s would call it, but my shoulder becomes unable to move up. So the mussel gets mad from overuse.

Now that I’m sick, I get the joy of going through the yucky feeling but I also can’t take any of my medicine until I’m done being sick. All the medicine I take lower my immune system. Since my immune system is busy kicking, I hope, whatever is making me sick, my medicine might make everything worse. Not being a big fan of hospitals or the hospital food, we need to avoid that.

Today is Sunday and I sort of feel better right now, which is why I’m typing this. I’ve only ate two crackers as well which made me feel awful. So I’m looking forward to Chicken Noodle Soup (Mrs. Grass brand, my favorite.) for dinner and nice long sleep. I had to go to work today cause we already work skeleton crew on Sundays.. but boy was it hard. I had to visit the restroom a lot this morning.

Looking out the window it is a wonderful grey, cold, and windy day. A perfect day to stay in bed. Hopefully tomorrow I’ll be better and won’t have to use up sick time. Praying to feel better soon so I can get back on track with my medicine before the wonderful flare up.

October – Dental work with Rheumatoid Arthritis

2013-10-21T07:34:00.000-07:00

I’ve decided to find a new rheumatologist. I just can’t go back to the last one I tried. I feel I need my focus on my RA first. Kind of hard to lose weight when they just want to push more prednisone burst on me. So I’m not taking any prednisone and I’m refusing to ever use it again.

So now I just have to wait until February for a doctor’s appointment. I only have Friday and Saturday off with my job so I found a doctor who is open on Friday. The last Rheumatologist wasn’t. I’m just hoping if I keep doing the blood work I can keep getting my meds refilled until then.

I also have a dental appointment that had to be rescheduled, now 1st week in November. I found out that I had to have doctor permission just to get my teeth clean. Worse part is if I need any more dental work like a filling or anything more extensive I have to be off my Orencia for three to four weeks. I don’t think they understand what kind of pain they are asking me to go through especially through the winter months. I can only hope we don’t run into that issue. Otherwise I’ll be asking how severe it is and if it can wait until spring. No fun at all.

Rheumatoid Arthritis –Natural Remedies

2013-10-20T07:11:00.000-07:00

by jconejo

Natural remedies seem to work for some and then not for others. I have often wondered why. Was it their state of mind? I don’t think so. Personally I have tried many of them. As with the prescribe meds natural remedies can also have side effects. Check out this article on WebMD for more info.

Now I’m not saying natural remedies don’t work. I personally think that is how the doctors got started. There are some things to consider. If you are already take medicine from the doctors then you really do need to check with the doctor. The natural remedy and the prescribe medicine could interact with each other. Especially with biological meds that are being used for RA (Rheumatoid Arthritis).

Another thing to consider is the severity of the disease. There is light, mild, and severe. I have severe RA. According to WebMD article, men tend to get more severe symptoms. Since everyone can have different ways that RA affects them, there are many ways for treatment. Some many different variables explain why some natural remedies will work for some people.

For me I’m giving the doctors a hard time to keep my number under control. So trying anything more at this time we need their approval so we could find out what works and what doesn’t.

I have many friends, family, and readers who tell me about natural meds. Keep sending them in and tell me how it is working for you. I’m happy to share the stories and remedies here. I just hope this explain why they work for some people and not for everyone.

Keeping put

2013-07-01T17:39:00.000-07:00

Although my 1st visit with the new Rheumatologist didn't go well, I'm going to stick with him for a little bit. One main reason is that Rheumatologist are so hard to find and this one is less than a mile from my home. So as long as he is good I'm going to put up with a little rude bedside manor. However I am going to tell him to back off on my weight and there is no way I'm consider lapband surgery for a mere 70 pounds.

I have took myself off the prednisone (was 5mgs a day) since the appointment and have already lose some weight. I'm not going back on the prednisone unless I have to.

New Doctor, not for long

2013-06-13T17:13:00.000-07:00

I met my new Rheumatologist, he is not going to be my Rheumatologist for long. He kept going on about my weight and how being over weight can lead to being Diabetic and it runs in my family. Well I know lots of people who are very skinny and has Diabetes and I know many over weight people who don't have diabetes. Don't get me wrong I know diabetes is controlled well with good eating habits but I don't have Diabetes.. Plus the only reason I put on a few pounds is because they keep putting me on Prednisone. I still suppose to take 5mg a day... well I refuse to take any more of it.

So today I called my family doctor and asked for another referral because the last one is going to work out. So far I haven't been asked for details but the Rhematologist talked very little about the RA and how it affects me and more about Diabetes that I don't have... maybe/hopefully never will. He even mention a lap band surgery... now I am 70 pounds over the ideal weight but I don't think its a surgery issue. I think my weight is because every time I try to workout or just even walk on a daily bases my RA flares up. The doctor respond with a wonderful Prednisone burst. So it very easy to see the circle.

Oh well. No more Predisone and back to the drawing board for a good Rheumatologist.

Rough start to June 2013

2013-06-01T00:04:00.000-07:00

Its 2 am and I'm awake because I got an itchy side effect from my meds. Its happens sometimes so I took some benadryl and waiting for that to start working. Yesterday morning was horrid. It took 5 hours for my RA to stop hurting in the morning. My upper back is very sore the mussel cramp and hurt to touch. I used a heating pad off and on for the back, shoulder, and legs. The odd part is the pain shoot down my arms and they were shaking. I wanted nothing more but to climb into bed, but that wasn't an option. I made it through work however.

I took a nice hot bath as soon as I got home. Which I could stayed there longer. My neck is sore right now with the itchiness so now fun right now either. I'm interested in either getting some kind of access to a pool or hot tub or maybe I can get my doctor to get me in some aquatic therapy.

I have an MRI schedule Monday at 7am. This should be early enough so I don't miss work. Doctors at the care today clinic want to make sure it just the mussels giving me this pain and not the bones. The doctor was hoping the pain was due to stress. I usually handle stress better but I wish I could take a vacation, which I have 10 days planned for in July.

We have a nice vacation planned to see family and then go to Cedar Point. My kids have never seen Cedar Point yet. I love it, but I'm concered if my husband and I will be able to handle it. We may need to get a travel scooter... we both my need one is the bad part. Plus I really don't want to seperate from the kids/family so I don't really want to use the handicap enterance on the rides. I'll have to look more into options, if we can get or rent a travel scooter maybe we can park it when we do rides and use it inbetween rides to get some rest. It may be more of a pain than it worth. We did get two days at Cedar Point to give us more time. We used to do it in one day when I was younger but it has been years since I have been there.

My husband has an MRI on Wednesday. Then they will be sending him to an another doctor to talk about what options we have. The X-Rays show the bone above in spinal fusion has moved or broken off so they need the MRI to see more clearly. However we are all thinking it sounds like back surgery number 2. He is in lots of pain and has a hard time even riding in a car. Which worries me about our trip, he may not be able to ride any of the rides. We'll still go and let the kids have fun, but we have to be safe first. I don't want to make things worse for a few minutes of fun.

Our kids are getting much older. My oldest is 15 and ready to get his permit next week. This is a nerve racking time for me to think about him driving, but it will also be a large help. My husband says it hurts for him to drive so I worry about how safe it is for him to drive. My oldest will be a huge help driving his Dad around when he is not in school.

I then worry about how much responsibility I'm putting on my children. They help with so much already. If my husband does back surgery I'll need even more of their help. Last time the back surgery too a year for him to recover, but he was back to almost normal. Which is most likely why we are at this spot because he went back to doing maintenance. We tried to get him an office job, it just never worked out.

I'm thankful I can write and work in an office, but money is very tight with just me working. We have been waiting on an answer from disability since January. I pray we hear something soon. We have had five doctor now tell us he can't work anymore. They are working on just getting him to get around and do things around the house. Even washing dishes causes him pain, and we have a dishwasher.

So I can see there are way too many stresses right now, but there isn't much we can do about them. Only time can fix it.

Rheumatoid Arthritis and Stress

2013-05-20T15:56:00.000-07:00

Stress and Rheumatoid Arthritis are not a good combination. I have a stressful office job routing out tech's route. However, the job doesn't stress me out to the point it affects my health. I actually enjoy my work and look forward to learning and figuring out problems. However some of life's other stresses can really be a pain, really a big pain.

Stress can affect even healthy people. Stress can cause stomach problems, sleepless nights, headaches, and depression. When you have Rheumatoid Arthritis you get to have the added fun of RA flares, mussels cramps, and exhaustion. When life is stressful there are things you can do to help reduce your stress level.

Water can be a huge help. One day I hope to have a hot tub, but taking a nice hot bath will work as well. A hot bath or using a hot tub is a great way to use heat to loosen up your mussels and give you time to just relax.

Swimming is also a good way to ease mussels because the water takes the pressure off your body. Swimming can also help you to get more sleep. You can move easier in the water and have less pain, therefor you can get good exercise that your body needs which will help you to sleep.

Calm down and talk about it. You can get mad, you can yell and scream but nothing is going to help reduce your stress until you clam down and talk. Even stresses that can't be changed or fixed can be easier to handle if you talk to people about them. This blog and my online writing is my stress relief. I love to talk about life, things I have learned, and share my opinions about everything.

There are many ways to reduce stress doing activities that you love. Singing, dancing, playing music, playing games, walking, shopping, going out, and being with family can all be ways to reduce stress. Seeking medical advice from a doctor is another way to help with stress and the effects of stress. Sometime I have to see the doctor for mussel relaxer or meds to ease flare ups to help reduce the effects of life's stress.

Paperwork, "Last day you felt well?"

2013-05-05T17:44:00.002-07:00

I was working on filling out new paper work for the new Rheumatologist. I find the paperwork completely stupid. Why? The doctor is in the same building that my family doctor is in and the same office of the last Rheumatogist, who is leaving.

I hate writing things out on paper, if I could type the info it would be faster and easier. Writing with pen and paper just hurts. Not to mention all of these questions are already in their files. They gave me one little line and ask me to list treatments. I really want to write "Sorry long list won't fit here!"

and then I get to the question that ask "Last day you felt well?" Okay, I couldn't help myself anymore. I wrote "Good Question, This affects my life everyday." I'm mean gee lets see I was diagnosed when I was 20 (I'm going to be 34 in June) and it does affect every single day of my life. It just something we have to live with.

The next question wasn't much better. "List all medication ever used for this problem." Really I don't think I can remember exactly what we did 10 years ago, nor do I care anymore.

I just hope this new doctor is smarter than his paper work. It listed I bring all my meds to my appointment too. I'll bring most of them. I'm not carrying the Orencia in there. Orencia need to be kept cold and I don't like traveling with it. Really why do you have to see the meds, you don't believe me. Its not like I want to pay you over $100 a visit to just not take the meds you suggest. My appointment is on the 13th. Should be interesting.

picture is by nikareteku

New Doctor, yeah, I think.

2013-05-02T18:59:00.000-07:00

Now I have to say this was much less of a pain then I thought it would be. May 13th is my appointment with my new doctor. I was even able to switch days at work so I won't have to use personal time to see him. Hopefully this will last awhile. I like to stick with one doctor for awhile so we don't have to keep changing things.

My husband, Richard, is start physical therapy tomorrow. There is something wrong with his back again. They are going to schedule MRI to get more information and he is being sent to an orthopedic. Sound like it may be time for another back surgery. This is a little scary but it worked out best last time. It just put a lot of stress on me, as I'm the only one working. We have heard from four doctors now that he needs disability, hopefully that will come through soon. We have been waiting almost six months now for an answer.

Stress is a very interesting thing. I do my best to ignore and deal with it but I find it leave my shoulders feeling very tight and sore. Stress also makes me feel tired. Thankful I have a wonderful family and really good work environment that keeps me going.

I have to take my tramadol almost daily. I've been getting an odd shooting pain in different spots. Usually my hands, hip, and knees. Now heat and rest help but it been too hot for a heating pad and no time for rest. I'm pushing to write more to help make some money and with my day job, it is turning out to around ten or more hours a day typing away. Should be good exercise for my fingers right?

Thankfully we have an already paid vacation in July. We'll get to go see our family, which is eight hours away. I have a feeling we are going to need the break. I've told Richard to make sure to push the surgery off until after the vacation. I can't wait to see everyone.

Finding a new Doctor

2013-04-28T10:08:00.002-07:00

Lately I haven't been 100% happy with my rheumatologist. She a great doctor but I keep getting the feeling she doesn't have time for me. Now I'm having a wonderful flare up. She called me in a prednisone again but I'm still having issues. Then my work schedule changed for June so I called to switch the next appointment date. When I called I found out she claims to be leaving June 20. I say claim because they said this twice last year. Well I'm tried of playing these games. So I have called my family doctor and asked for another referral. Now my insurance doesn't require a referral but for some reasons the doctor office does.

Well it been almost a week and my family doctor's nurse has not returned my call, so I have made an appointment for Monday to see him. Beside I'm still enjoying this wonderful flare up anyhow. Finding a new doctor can be so stressful. I don't really want to drive far, but don't want to have to keep switching and I want someone who will take the time. I don't even know what my blood work number look like right now. I have asked my rheumtologist's nurse but she never gets back with me.

On my last appointment I told the doctor that the Orencia injections are not a miracle.. and started to explain when my husband jumped in and told her about the extra stress as well because I'm the only one working right now. Now that is but its not really bothering me.. the appointment went down hill from there because she spent more time talking to my husband and I felt ignored. They talked about why he is working, his medical issues, unemployement, and disabiltiy. Now that doctor is not his doctor at all and I wanted to be like a little kid and yell hey this is about me. The Orencia is helping but I'm still spending two weeks out of the month sore and exhausted... plus if I try to do anything like help my youngest learn to ride his bike.. which was the start of this current flare up which is on week three.

So my doctor leaving my be a good thing. I need a doctor who will have more time and listen. I feel the doctor is happy with my at home injection and I'm not. I really dislike doing them although I kept up with it. In the mean time I just want to sleep.

Doctor Appointments

2013-02-08T20:22:00.001-08:00

Doctor appointments are just part of having RA, like many other conditions. Majority of the problem is paying for the doctor but then fitting all the appointments into your schedule can be hard as well. Last month I had to cancel my appointment due to schedule change at work and set it for February 25, then yesterday I got a call that the doctor had to cancel the appointment.

Frustrated to say the lest. The Orencia I don't feel is working that wonderfully.. on the other hand if my sed rate is getting better maybe it is worth it to keep using. I was really looking forward to the appointment for the answers to my questions. Well my next schedule weekday off was Feb 25th, doctor is not available that day either. So I got taking March 11th for my next appointment. Thankfully I have wonderful co-worker who help me out by switching days.

My day job is a stressful job for most but I can normally handle that stress, but the stress I get from the doctor and the doctor's nurse if enough to make me scream. I suggested to the nurse twice now that I may need to be referred to another doctor who has more time, as we have had schedule problems in the past. I was told I'd have to go back to my family doctor to get a referral else where. While my insurance is awesome and doesn't require a referral the doctor's I have called do.

So with all this wonderful stress I went for a walk on my breaks at work. In our back parking lot you can see the mountains such a wonderful a pretty view. The view was just what I need to relax some. Not as awesome as the photo above but relaxing. Nature has always had a calming effect for me.

So we are going to continue with the self injection of Orencia and hope it is doing good. I just don't like needles still.

Note: picture is from http://www.crmr.com/emerald/photos/ They have many amazing cabins for a nice get a way.

Black Cumin Oil??

2013-01-22T16:52:00.001-08:00

My friend Brenda shared this link with me:

http://www.herbsandoilsworld.com/is-this-the-most-important-oil-to-put-in-your-body/

It is about black cumin oil which says it helps to increase the body's immune system. It also talks about a study from 1987, which for me doesn't say much because we have come a long way in medicine since that time.

I have an honest question. Not putting anything down but trying to understand. RA, Rheumatoid Arthritis, is due to the immune system attacking the joints. Most of the prescription drugs we are given lower the immune system to help slow down RA, so is increase the immune system a good idea?

So if you use or know someone who uses black cumin oil, we are looking for your opinion. I'm also looking for a few opinions on my above question.

Note: picture is by nikareteku

Husband: fibromyalgia and osteoporosis

2013-01-15T16:02:00.002-08:00

Update on my husband. He doesn't have RA, which is good. He has fibromyalgia and osteoporosis. Not the worlds best news but it could have been worse. The doctor did suggest that he should bend and was going to send a report back to his family doctor. I have no clue what he'll do for a job. At least he can go work most of the year at Dollywood. They worked with his back issues last year and took care of him.

Last year he quite smoking. Now this year his working on getting more of his health in order including loseing weight. Just going to be having to watch our money really close until Dollywood opens and I hope they have a job for him.

1/14 no sleep tonight

2013-01-14T21:01:00.001-08:00

Sleep eludes me once again. Highlights and struggles of the day replay in my head. I try hard to lie still in bed. I was almost there, almost asleep when I heard a bump. The bump could have been a car, a child rolling in bed, or an sound from the heat of the furnace. Whatever that bump was I was wake.

I put my hair up in soft curlers. Added some sparkles to my nails and some 24 hour makeup to my face. I laid back down but the sounds of husband sleeping was enough to convince me to go down the stairs. Hopefully I’ll find something quiet to do and feel sleepy again soon. There is eight hours of work tomorrow that I really need some sleep for but it is too late now to take a sleep aid or I’ll never get up on time.

My husband is also having issue with joint pain. He has a degenerative disc disease which has already cause him to have a spinal fusion around 2002. I’m the only one working right now due to his health problems. He was trying to clean at a local truck stop that had showers, but his back couldn’t do the job and he was fired. He is now on my insurance and got to see a family doctor who has suggested he find an alternate way to make money besides what he is used to as although he has many health issue is still young.

I have no clue what my husband can do. He has done mostly retail, management, and maintenance. Right now he can’t lift over fifty pounds, bending and twisting hurts, can’t hear well on the phone, and having many joint pain issue. Tomorrow he goes to a Rheumatologist to try to figure out the pain. The family doctor suggested he may have RA too.

He has applied for unemployment but it can be up to eight weeks before we hear an answer. He also had to call every hour from nine to four to get through to unemployment in Tennessee. He would be on hold for twenty minutes then a message would say “I’m sorry but we are expiring high call volume, Please try your call again later.” Then he would be hung up on. We did this two weeks ago, but when he went to certify on Sunday they told him his year had ended. When he got through it was because they open an old case from when he switched employers in 2011/2012. It is now Jan 2013 and a new unemployment claim. (We never did get unemployment from 2011/2012 as he was working soon after the file date.)

I never wanted a full time career. I wanted to be the house wife. Now I’m once again bring home the money to keep everything running. So odd how life turns out. The one skill that has lead me all this way was simple typing. I’m not the best spelling. Spell check is my friend. Even as a writer, I need a good editor.

Work today was a little rough. The weather is rainy and cold. I’m starting to think sleep is eluding me due to stress. I’m normally good at dealing with stress but this is a bit too much. I’m worried about the bills, my husband being able to work at all, the kids wants and needs. I just though my husband would be the provider and I would help. At least we now have good insurance and can both get medical care. Many people don’t have that. We had blown through are deductible on January 9^th. Thankfully we have an out of pocket expense cap, which we are half way to. I’ll most likely be spending the next 11 months paying off the medical bills.

I’m still taking Orencia, but missed taking it last week due to a nice cold that hit everyone. I’ll take it again this Wednesday, but so far I don’t see the big benefit. I’m still very sore. My Rheumatologist said it may take six weeks. Well we started with the IV, switched to self injections when I got sick, then I had to skip last week from being sick again. So I don’t know maybe it needs more time. My next appointment with my Rheumatologist is Feb 25. If no improvement by then I’ll file my complain with my doctor. It’ll be back to the drawing board.

2013 New Year and Insurance

2013-01-01T07:11:00.000-08:00

Now the new year has begun and for many of us it is time to meet our deductible. For people like me it not only meeting our deductible but also hitting our out of pocket cap as well. My prescription for the Orencia injections is $2535. Now my deductible is $2350 and my employer helps to pay $1250 of that. Once the deductible is met I get 90/10 insurance, which means the insurance pays 90% while I pay 10%. This continues until I meet my out of pocket cap, then the insurance pays for everything. Now my out of pocket cap, as long as I stay in network, is $4850.

Now you can quickly see where I'm going to go right through my out of pocket cap. Making the 1st of the year very hard for my family as the bills rack up really fast. Now there is no way I have the money I would need upfront for the Orencia, but thankfully I have a card from Orencia that makes it so I only have to pay $5 out of pocket each month. So that will be a huge blessing for our family.

Just to make life a lot more fun, my husband is unemployed. He is also having back problem and hasn't seen a doctor in years due to to lack of insurance. He is now adding on my insurance, which means the bills will pill just a little faster while we met our out of pocket expense. We are a mess for a couple. He has asthma, back issues (has had a spinal fusion done), hearing issues, and is starting to have joint problems too. The one good news we do have is that he can go back to working at Dollywood when they open in the spring.

The wonderful added stress of all of this and the cold weather has my body a little unhappy with me. Just going to have to look for the bright sides and keep moving.

Oberservation of Daily life

2012-12-09T13:39:00.000-08:00

Now I know everyone get those feelings at times. The ones that makes them feel odd or think no one understand them. However I get this the worst when I use my wheelchair. I don't always have to use a wheelchair. With RA it depends what day it is. If I have step wrong or something is flaring up or if I done too much walking or shopping for one day will all cause me a need to either stop or use the wheelchair. Well I totally refuse to stop. I'm going to do what I want one way or another. On the same side though I can't enjoy shopping or effectively shop wisely if I'm in pain.

My husband and I had been out Christmas shopping. We had gone threw four thrift store, a mall, four stores, and was about to go to walmart. Now Walmart never has enough electronic carts to go around so my husband pulled out my own wheelchair. Inside we found a bulky item at a great price that he wanted to run out to the car. (don't want to give away the item yet). So he went to check out and would return to me. I rolled my self into the lawn and garden. I was enjoying looking at all the Christmas displays. Now I have to admit it is very hard for me to roll myself. I do it but a little slow. So I stay to the right of the isle yet it seems some people still act like I'm in the way.

I get odd looks from people, which I do my best to ignore. I also have people who will reach around me for item instead of simple excuse me. I can move if I'm in the way. Ok, maybe they are trying to be kind an not make me have to move. Then I get the people who will rush right in front of me, making me stop so I don't hit them. It the same as cutting off a driver.

Now when I do use a store electronic cart it seems to get even worse. People don't know what my problems are and can't see them. I get rude looks, rude comments, and even my family get treated different. The last time I used the electric cart was when we were grocery shopping. I was showing our children that price label on the cereal so they can pick out the right flavor but at the best price. The store was busy but the few people who did come down that isle made the whole family feel in the way as they just grabbed around us and said that people wouldn't need those cart if they just learned to walk.

Not all people are really rude I just feel that don't understand. Never just assume. Besides I don't see what my mode of transportation bothers other people anyhow.

Cost of Orencia

2012-12-04T16:25:00.001-08:00

Now before my complaint starts for the overall cost. Orencia does have a co-pay assistance program, which I have signed up for and hopefully will be approved.

This is for once orencia infusion which the first four are done two weeks apart and then once a month.

So this is the total cost of one infusion which is a half hour and necessary lab work. There was two chair in what looked about the size of three small gallery style kitchen. Now this room had less to offer then the previous room when they used to give the RA meds with the cancer meds. No TV, No snacks, and No water provided this time. Not that snacks where needed for just a half hour, but TV and water would have been nice. My point here is to not put down the office, but to show that this was nothing more then a spot in a chair with a half hour infusion. Had I not had my insurance, Which is what show above I paid zero out of pocket (I've met my out of pocket cap for the year), I would have went bankrupt with just this one treatment trail.

Now I don't have the breakdown yet of how much of that was for the orencia and how much was a charge for the seat and the IV itself. It is easy to see why so many people suffer with medical issues that can be fixed, it all boils down to money.

Losing Weight with RA

2012-11-21T04:56:00.003-08:00

Losing Weight is difficult on its own. For people with other related health issues it can be even harder. For people with health issues that affect joints and mussels the best way to exersice is the water. Because the water take the pressure off the body and allows the person to beable to move more. Unfortuanly I don't own a pool and don't have much time. I'm a mother, a wife, a router for a cable company, an online writer, and a gamer. Multitasking is my friend as I often don't do just one thing at a time, but you can easily see where the lack of time is. Especailly when everyone is telling me to make sure to get a full eight to ten hours of sleep. I'm averiging about six right or less right now, just having a hard time staying asleep. I do have a prescription to help with that but I don't like to take it on nights when I have to get up early the next day.

So losing weight is just plain hard, but I really want to lose some pounds. It would help me to take off some pressure from the joints and make me feel better. Since I know my time is limited I decided the exercising will need to be something I do from home. Fully knowing that exercising can also cause a flare up.

Last night was just horrible. From should to should everything is tight. I feel a big squished. Just having my husband rub a mussel rub on it hurt. I took a hot shower and stretched while I was in the shower. This helped some. I probably really need a Chiropractor or a Massage therapist, but like I said not much time.

This just adds to my point that I need to lose weight and exercise more. Now tomorrow is also Thanksgiving so I have cooking to do, thankfully my husband is here to help too tomorrow. The best way to exercise and fit that into my schedule is to do more at home. So this morning I made the kids breakfast. Nothing too hard. I pored the cereal, made one oatmeal in the microwave, opened a can of apple sauce, and made coffee (for me). Then I baked some peanut butter cookies. Cleaned the kitchen. Started the laundry. I'm sore and tired and currently taking my break typing this. When I done, I'm going to go put the dishes from the dishwasher away, eat something, put the laundry in the dryer, and get dressed. I'm going to stretch out some more while I get dressed to try to get this darn pain in the neck to ease up.

Now much of that is daily like. Eating and house cleaning. I don't normally do much of the house cleaning. We have three floors, so we have two sets of wonderful stairs to go up and down. My computer is on the bottom floor too. However, today leads me to my wonderful idea of exercising but simply helping the other family members out. I'm just going to push and keep doing what I can. Stop when it is too much. Going up and down the stairs is starting to bother my right knee, but I'll just have to wrap it up and use some mussel rub.

So if you are in the same boat as me, try using house hold chores to exercise. Don't say your house is all clean and done. If you think that, please tell me the last time the walls where washed, baseboards washed and dusted, clean out the cupboards, reorganize something. (like the closets) My point isn't that we all have dirty homes, it just that you can come up with something around the home that also includes some physical actives. Although this is still a bit to squeeze into the schedule it helps to not have to go anywhere to do this.

If house chores are all done or the projects are just too big to start right now, consider playing a game. Not a sit down game but one that get you up and moving. Like the Wii or Xbox Kinect. These are a great way to have fun with the family and exercise. Just need to be careful not to do too much. I know the last time we played the Beatles Rock Band game on the Wii. I played the drums and the next day I had a hard time moving. It was also totally fun. I can't wait to do that again.

Losing weight will cause us to challenge ourselves to get up and move. The hardest part is finding a balance. It going to hurt, just have to try anyhow.

Note: Picture is by Ayla87

11/19 update

2012-11-19T00:27:00.001-08:00

It has been a long week. I have tried to start walking more which may be contributing to a flare up in my knee. I just so want to knock off a few pounds.

One more week before the next oriencia infusion. Next week I have to see the doctor and then go to the hospital for the infusion because the nurse will be off that day. They had to work hard to fit me into their schedule since I only get Sunday and Monday's off. I really couldn't keep using personal time to cover for the apts, I was running out.

I've been having a wonder itchy skin issue though. It currently 3 am and I just can't sleep. My husband is also experiencing the same issue with the itchy skin. I think it is do to the change to an off brand soap. We normally have to use Dove Sensitive skin or an off brand similar. I think he tried a different one that just said sensitive skin and was a store brand. Well tomorrow I'll remedy that with a stop at the local store.

I would really like to see about visiting a Chiropractor too. The back of my neck just is sore all the time and feels all tight and swollen. This is where I really wish we live in a place that had a pool. When I can get into the water I feel all the weight is lifted off my body. The water is smoothing and I can move around. Of course getting out can be hard and often wipes me out of energy. This would be perfect for my weight loss goal though. Just don't have extra money or time right now for the public pools. However the next time we move has got to be into a place that has a pool. That may be dreaming but it is a goal.

My insurance still doesn't have the bill listed from the medical group.. but hopefully they will soon. I know the start of the new year is going to be rough until I met that out of pocket expense. The biggest problem is that I meet that expense so fast. After my deductible is met I do have 90/10 insurance. Meaning I only pay 10% of anything after the deductible. My employers is awesome and also helps pay for half of my deductible as well. Out of everything I have dealt with I think I am very lucky to have found such a wonderful place of employment. So days are still tough, but I love my job overall.

Note picture above is from http://www.bracelets-plus.com/. They make many wonderful bracelets, collars, chockers, key chains, and more. I just love their designs.

Rough days with Cold Weather

2012-11-07T18:04:00.000-08:00

We had some fun with my liver functions being messed up. The doctor took me off the methotrexate and thankfully they went back to normal. So no more methotrexate for me. Now the methotrexate is one of the main drugs used to help stop or slow down the Rheumatoid Arthritis. So right now we are praying the Orencia can do it all.

With the cold weather though I been getting harsh sharp pains in my lower back, hip, hands, knees, and shoulders. I called into the doctor and got some tramadol. I made the mistake of taking a whole one tonight. I'm a bit of a light weight so next time I'll take only half. I can still feel the pain a little but I don't like the cloudiness in my head feeling I get. Now I am 33 years old but I totally understand why it seems people move to warmer climates as they retire.

Monday is my next infusion day. My goal is to drink lots of water on Sunday to make the IV part go as smooth as possible.

Days like today make me not want to get out of bed but I've managed to work eight hours, thankfully on a computer, then come home and work on some articles and a few blogs. Thankfully my family has done most of the physical part of today. My husband made dinner, it was leftover night thankfully as he had worked too. The children did a wonderful job cleaning up. I'm just very thankful on days like today they are here for me.

This is the end of my night for today. Off for a nice shower and bed.