Amber's life with atypical HUS, Crohn's Disease, and post thyroidectomy

2017 in pictures

2017-12-12T14:58:00.000-06:00

Wow...it's been a long time since I have posted. I try not to go this long in between posts, but sometimes, I guess it will happen.

2017. A lot has happened in 2017. So much so, that I don't remember a lot of it. ha!

I have continued with my 10-11 day schedule with Soliris for aHUS.

I am now on Remicade infusions every 8 weeks for my Crohn's Disease.

I am going to post pics from this year to try to catch up!

We will be going to South Dakota for Christmas this year, to be with Ben's family. I am sure there will be a ton of pics when we get home!

Here we go!

February:

Here I am getting my Soliris infusions at home. I swear that getting these at home has been such a blessing for me.

Also, in February, Ben, Mom, David, and myself went to The atypical HUS Foundation conference in San Antonio! Below is Ben and I on the river walk!

April:

We attended two Rangers game! Always a fun time!

May:

In May, we went to Kentucky to see my Dad! (How do I not have any pics of me and my Dad??!?!). We went to Abe Lincoln's birth place, shown below.

We went to the Corvette museum in Bowling Green.

We hung out some with my Uncle Joe and Aunt Holly (no pics of this either. sheesh!)

We had dinner with some of our aHUS family, Lee and Daphne (who happen to live in the city that I am from, in KY)!

We went to Lexington, so that Ben could see the UK campus!

We went to Tennessee to see some of our cousins, Freddie and Wilma; Uncle Wardean (you guess it, no pics of this either). We went to the cemetery while there to visit Aunt Mable.

We had a great time on this trip! Can't wait to get back!

June:

In June, I started my Remicade treatments! I have to go to an infusion center for these. Thankfully they are only every 8 weeks.

Also, in June, I met with US Senator Ted Cruz's liaison at their Dallas headquarters to discuss aHUS, rare disease, and some of the changes that are happening in healthcare!

August:

We went to see Steven Tyler in concert at the Winstar in Oklahoma! Amazing show!

September:

In September, I was asked to join The atypical HUS Foundation as a Board of Directors!!! I accepted and then 2 weeks later, I flew to California to the Global Genes Summit!

October:

In October, I had surgery to have my port removed from my right side (due to many, many complications), and a new one placed on the left side!

Ben, Mom, and myself (no pic of the 3 of us! I suck at taking pics) attended an Alexion Luncheon in Dallas! Met so many great aHUS'ers!

My car died! However, we were able to revive her! WOOHOO! (it is so sad to see her on the wrecker :( )

In October, we also attended the Blue October concert at the new concert venue in Irving with some friends! Great show!

November:

In November, the weekend after Thanksgiving, Ben and I went to see Willie Nelson in concert at Winstar in Oklahoma! We went to gamble a little and see the show, to celebrate our 6th wedding anniversary a little early!

Great night and I am so glad that we went!

December:

The first weekend in December, I flew to Orlando for a board of directors meeting! From leaving DFW on Friday evening, to touching back down in DFW on Sunday, I was gone 46 hours!

We worked a lot in that time!

We also were able to sneak away for a little fun at EPCOT!

So, that is where we are thus far into 2017! I hope to be able to keep up with the blog better in 2018. There are lots of aHUS trips and advocacy planned for the new year.

Hope everyone has a very Merry Christmas!

Hope - Rare Disease Day

2017-02-28T14:23:00.004-06:00

This past weekend we went to San Antonio for The Atypical HUS Foundation conference. It's always such a good time. Seeing those that have become family. Seeing those that KNOW what we go through. Knowing that we are not alone.

Since we have been home, I have been thinking about where I was 2 years ago in this journey called Atypical HUS.

I thought I would share my thoughts and feelings for others. What better day to do this than on International Rare Disease Day?!

Two years ago, I was fairly new in my diagnosis of aHUS still. I was diagnosed Sept/Oct of 2014. That first year was HARD. There were a lot of changes. Life saving meds were administered. I was literally fighting for my life.

After learning what I could from the very limited information on this disease, I was overwhelmed and hopeless. I told those closest to me that I would not be alive in 5 years. Whether it be the disease taking me or me taking my own life after tiring from fighting the disease.

At that time, it was the truth in my mind. I had no hope.

In the late fall of 2015, Ben and I attended a luncheon put on by Alexion (the pharma company that makes my life-saving drug, Soliris). We heard a patient story, we learned a ton from the doctor that spoke, we met others that are in the same journey as us. WE FOUND OUR HOPE!

I knew at that time that with the support of those with this disease, the information that we could find by going to these conferences, the people we would meet...that I would survive this. I had found my hope.

Since that first luncheon we attended...I have been to and spoken at so many conferences. I have shared my story in hopes of helping others get through the rough patch and grieving stages of a rare disease diagnosis.

Without these conferences and people to share this journey with, I was honestly lost. I was staring a life threatening disease right in the face. It's a very scary journey to be on with rare disease.
There aren't many people who have the disease or understand what you are going through.

But the people at these conferences, these people get it! They are currently living it as well!

There is hope out there. There are researchers working to find treatments and cures for this awful disease. We are one of the few rare diseases that actually has a treatment. We have each other. I have made some incredible friends that are now family. I have hopefully helped others somehow along the way.

We met several people this past weekend that were very recently diagnosed with aHUS. You can always tell how overwhelmed people are with this disease. It's so much to take in.

To those new patients, and even the experienced patients, please don't give up.

Please reach out to those that you trust. Reach out to those that are experiencing it as well. Hang in there. We are a team, a family. A family...that will fight together and love you through each set back and step forward. We are here!

spleen infarction

2017-02-02T18:55:00.002-06:00

I wanted to post an update here as I have had a lot of people asking why I was having scans done earlier this week and for those in general who want an update on my recent health scare.

Please know that I don't post this type of updates for attention. It is strictly to help others that might have a similar situation, or to update those who want an update.

Also, having an ultra rare disease, it is helpful to see the issues that others have, to know you aren't alone, and to see what type of treatment others have been through.

I really do appreciate all of the thoughts and prayers. They really do mean more to me than I can tell you all.

With that said...my last week has been interesting, to say the least.

At the middle of last week, I started having pains on my left middle back and left side. I just assumed it was my Crohn's, because I have been having some minor issues with it.

This past Monday night, the pains traveled to the abdomen area as well and became extreme. I was doubled over in pain. So, I called my GI's office first thing Tuesday morning, thinking that I may have a blockage or obstruction. My GI ordered an emergent CT scan for that day. I went, had the scan. Came home. Wednesday morning, I had an appt with my GI.

The good news is, I didn't have an obstruction. As a matter of fact, my intestines look pretty good. There are some things we are keeping an eye on, but that is typical for Crohn's patients.

The bad news is, I have an infarction on my spleen. This means that a blood clot traveled to my spleen and cut off the blood/oxygen supply to part of my spleen. This portion is about the size of a walnut. Because it cut off the blood/oxygen supply...this part of my spleen is dying.

This is something that can happen with aHUS (atypical Hemolytic Uremic Syndrome). It's not too common though. I am actually my hematologist's first patient to have this particular issue.

I have learned a lot about the spleen in the last few days. Your spleen filters the red blood cells, platelets, and helps your body fight infection. Because I am immuno-suppressed, I need this help! You can live without a spleen, but for someone with my conditions, it's not ideal.

So, the dying/dead part will remain, and the rest of the spleen will do it's normal job.

The worse part about this is the pain. My hematologist told me that he cannot believe that I am able to work while having this pain. I just do what I need to do.

On a normal person, they would recommend aspirin and/or blood thinners to prevent clots. Because of my GI issues, we are choosing not to go this route.

However, my treatment for aHUS should be preventing this.

At the beginning of January, I was doing really well with my treatment and my blood levels were where they should be. So we moved my infusions from every 10 days to every 14 days. My hematologist believes this is what caused this to happen. My body just isn't able to handle 14 days in between infusions.

So, I am going back to every 10 days on infusions. All we can do at this point is watch closely for symptoms of another clot. And with a spleen infarction, the pain will probably last several weeks. My hematologist is very concerned but said basically the only thing they can do in this situation is remove the spleen if the whole thing dies off. He said with a partial infarction, the pain is the worst part. The pain, it can mimic a heart attack. It hurts to take deep breaths, etc.

So there it is. Effective, immediately, I am back to every 10 days on infusions. I am to immediately call my doctor and head to the ER if anything changes. I am to take pain pills as needed for the pain. We will do scans again in a few months to monitor the spleen.

Please, please, please listen to your body. If you have a weird or different type of pain, please have it checked out ASAP.

Thank you all again for the thoughts and prayers!

June didn't turn out as planned. Life can change in the blink of an eye.

2016-10-17T21:33:00.004-05:00

I came to my blog, thinking "I haven't posted in a while! I need to fix that!" Then I saw my last post and my heart sank.

You see, June turned out to be a very, very hard month for me. Maybe it's time I posted about it here.

June 10th, I woke up early and flew to Pittsburgh, PA for the meet up that I would be speaking at for The Atypical HUS Foundation.

I got to my room and desperately needed a nap. For once, I didn't check Facebook. Something just told me to sleep for a bit. I wasn't sleeping long when my phone started ringing. It was my Mom. She wanted to know if I had been on Facebook. "No, no...I've been sleeping".

Jeff had passed away very early in the morning on June 10th. Before his wife had a chance to call me, it was posted on Facebook. I'm so thankful that my Mom caught me before I saw the heartbreaking news on Facebook.

For those that don't know, my Mom was married to Jeff for about 10 years. Jeff was my father figure for many years. When Mom and Jeff were no longer married, Jeff still insisted that I was his daughter. Jeff moved away to Atlanta in my late teens. I visited there, he visited here. There were a few years were contact was very sparse. You see we both had addictions. We both put ourselves through so much. There were times of hate. But mostly, we loved each other as father/daughter.

Over the past year, Jeff and I had re-connected and had a strong relationship. We talked on the phone quite often....and for anyone that knows me or knew Jeff....those conversations were long winded. HAHAHA! A lot of my personality and sense of humor comes from Jeff.

On June 8th, Jeff and I had an hour plus conversation. We caught up, shared with how we were both clean and sober, talked about life, and the future. Jeff told me how proud of me that he was that I was making a difference in this world. We talked about planning a trip this year for Ben and I to fly out to ATL so Jeff and MaryAnn could meet Ben finally.

On June 9th, Jeff went to work that evening as normal. Very early in the morning on June 10th, Jeff suffered a massive heart attack at the age of 58 and passed away.

My heart shattered. I lost a parent.

Next month, I am flying to ATL to spend Jeff's birthday with his wife MaryAnn. I can't wait to give her the biggest hug. There will be tears, there will be laughter, and most of all...we have each other, just as Jeff would have wanted.

updates and pictures

2016-06-01T10:32:00.002-05:00

It’s been a while since I have posted an update here.

We have had a lot going on.

In November 2015, we attended an Alexion aHUS luncheon in Dallas, TX.

In December 2015, I spoke at an aHUS meet-up in Phoenix. I shared my story with aHUS and represented The Atypical HUS Foundation. After the meet-up, Ben and I stayed in Phoenix for a few days to celebrate our 4th wedding anniversary. It was a great time!

The holidays were a bit sad this year without Grandma LaVerne there. It’s always hard to have those first holidays, birthdays, events...after the loss of someone you love.

In February, Mom and I made a quick weekend road trip to Louisiana to see family. It was so good to see them. Can't wait to go back!

In March, Ben got a new car!

In April, we traveled to South Dakota for Ben's cousins, Josh and Sherry's wedding reception.

In April, I spoke at a Carter Bloodcare event in Mesquite, TX at he Resistol Arena. This was by far the biggest crowd I have ever spoken in front of. It was very emotional for me. I was able to share my story with aHUS and thank the many donors that possibly helped to save my life. This event was for the top donors in 2015.

The weekend of May 20th, I traveled to Orlando, FL for an aHUS meet up. I shared my story and represented The Atypical HUS Foundation at this event. Orlando is BEAUTIFUL and the atmosphere is so happy there!!!

Hotel pool

Hotel lobby from the floor I was on

Talking parrot in the hotel lobby

View from my hotel room

This weekend (June 3-6) is the very first conference that The Atypical HUS Foundation is putting on. It is in Nashville, TN. Ben and I will fly in on Friday, and meet up with my Dad. I’m so happy that my Dad is able to join us for this one! And, I can’t wait to meet some of the aHUS’ers that I haven’t met before.

Next weekend, (June 10-12) I am flying to Pittsburgh, PA to share my story and again, represent The Atypical HUS Foundation at a meet-up.

I am so honored that I have been given these opportunities to share my aHUS story and represent The Atypical HUS Foundation. It’s wonderful to meet other aHUS’ers and know that we aren’t alone.

What's the difference?

2015-12-10T14:02:00.000-06:00

I have had several people talk to me about my health lately and have said "I can't believe Crohn's gave you aHUS"....or "I can't believe you had to get your thyroid removed due to aHUS."

The above are not the case AT ALL. So I wanted to take a few minutes to tell you the differences in these and my health history with the 3 of them.

Let me first start this by saying, ALL THREE DISEASES ARE DIFFERENT!

Crohn's Disease - diagnosed 2012.

https://www.nlm.nih.gov/medlineplus/crohnsdisease.html

Crohn's disease causes inflammation of the digestive system. It is one of a group of diseases called inflammatory bowel disease. Crohn's can affect any area from the mouth to the anus. It often affects the lower part of the small intestine called the ileum.

When I was diagnosed with Crohn's Disease, I had been ignoring it for a very long time. It wasn't until I had bleeding for more than a week before I contacted a GI and ended up at the ER.

Because of this, I had a lot of scar tissue in the small intestine, which caused narrowing in the intestine. I got MANY obstructions.

In 2013, I underwent a lower right colectomy. This basically means they removed about 18 inches of my small intestine, my ileocecal valve, my appendix, and a few inches of my large intestine.

I do still have some issues with my Crohn's, but for the most part....I follow the diet I know works for me and I keep up with my symptoms and see my GI regularly.

This is something that has no cure.

Grave's Disease (autoimmune hyper thyroidism) - diagnosed 2013.

https://www.nlm.nih.gov/medlineplus/ency/article/000358.htm

Graves disease is the most common cause of hyperthyroidism. It is due to an abnormal immune system response that causes the thyroid gland to produce too much thyroid hormone. Graves disease is most common in women over age 20. But the disorder can occur at any age and can affect men as well.

After having crazy moments (literally), high heart rates, hot flashes, hair loss, drastic weight loss, major swelling on my neck; I went and got checked out. After multiple blood tests, it was confirmed that I had Grave's Disease.

For 2 years, I tried the medications. I failed the medications. My Grave's was not treatable with medication. So June 2015, I had a total thyroidectomy. Since, I am on medication because I now have no thyroid to produce the hormones needed.

atypical Hemolytic Uremic Syndrome (aHUS) - diagnosed October 2014.

http://www.ncbi.nlm.nih.gov/books/NBK1367/

Atypical hemolytic uremic syndrome (aHUS) is a rare syndrome of hemolysis, thrombocytopenia, and renal insufficiency. Genetic mutations in the alternate pathway of complement are well recognized as the cause in more than 60% of patients affected by this thrombotic microangiopathy.

September 2014, I was on a medication for Crohn's (a low dose chemo drug) and had liver failure from it. Because of this, it triggered the genetic mutation I didn't know I had, called aHUS. This put me in kidney failure. Caused my platelets to crash. Blood counts dropped, etc.

I currently get treatment for aHUS every 10 days via IV. This is something that has no cure.

So, please take note that while there are some similarities in my diseases, they are not causing each other. They are all very different and are treated very differently.

1 year ago today - aHUS

2015-09-10T22:04:00.000-05:00

I am writing this tonight, because tomorrow...I would like to spend in prayer...for our country, for my health, for my family, for my future, for our future.

1 year ago tomorrow, I entered the ER at Plano Presbyterian Hospital.

On that day, my worst nightmare came to life. On that day, I was almost dead. On that day, my life was FOREVER changed.

I would like to share a blog that I wrote in November of last year. This was when I was finally coherent enough to put my thoughts together about the previous 2-3 months. It was when I was able to semi-write or talk about it without getting physically sick to my stomach and crying. It was when I was starting to feel a little bit better with each treatment.

At the end of the blog post from November 2014, I will share my updates of my atypical Hemolyic Uremic Syndrome as it is today. What treatment I am currently doing. How I am currently feeling. Some pictures from that time in the hospital. Plus a few other thoughts.

So, here it is. The blog post I made in November 2014.

http://everybodysgottagetaway.blogspot.com/2014/11/my-health-story-september-2014-to.html

"My health story September 2014 to current

Early in September, I started not feeling well. I was tired all the time, dizzy, getting headaches, brain fog, dark urine, and overall not feeling well. I kept telling myself that I needed to go have blood work done, but I kept putting it off.

Sunday, Sept 6^th, I knew something wasn’t right. So off to the ER we went. After waiting forever to see a doctor. I had blood work drawn, got one bag of IV saline and was released with “dehydration” and told my lab work was normal. I asked for a copy of the lab work on the way out. Once I was in the car, I looked over the blood work. It was far from normal. So I figured I would check with my GI and make an appt soon. This was at a small ER that I thought I could trust, but not the one my specialists were at. Just closer to home.

Monday and Tuesday of that week, I was getting worse and assumed that I had a stomach virus because I was now vomiting as well as now having bloody noses and worse headaches than before.

I worked through it on Monday and Tuesday. Wednesday, there was no way I could even get out of bed. So I called in sick to work on Wednesday and Thursday. Thursday, Ben made me go to the ER were my specialists are. He knew something was bad wrong, but we weren’t sure what.

We get to the ER, I am projectile vomiting in the room. Blood pressure and heart rate shooting through the roof. Nose bleeding and the headaches were so bad that I could barely breathe through them.

The ER doctor recognizes me from my many visits due to Crohn’s and immediately knows something isn’t right. I am yellow. My skin, my eyes, etc. She orders lab work and heart monitors and does it on a stat. She also asks to see the lab work from the other ER. This is where the problem comes in. The previous ER only ordered simple, basic lab work even though they were advised I was on chemotherapy medicine. I needed the extensive blood work.

Back to Plano Presby. The doctor is pacing and waiting for the lab work. She is already working on admitting me, as she knows something is bad wrong. This is about where I black out and don’t remember anything for 7 days.

The next 7 days, I relive through what Ben, my mom, and other family has shared. It was bad. I was in acute liver and kidney failure. My platelets were low. My blood counts were all low. Extreme migraines. Something bad was wrong. Something very bad. I was near death many times during these 7-10 days. I started receiving blood transfusions. We were later told by multiple doctors, that had Ben not gotten me to the hospital when he did, I would have been dead within 24 hours.

Fast forward to 7 days later (Sept 18), I have a bone marrow biopsy, kidney biopsy, and draining of the lining of the right lung due to fluid. When the kidney biopsy comes back on day 8, it’s not good. There are clots in my kidneys. It is immediately determined that I must be treated for TTP, or Thrombotic thrombocytopenic purpura.

http://www.nhlbi.nih.gov/health/health-topics/topics/ttp/

This is a rare blood disorder that causes small blood clots in various organs in the body. The testing is very extensive and requires 14-21 days for confirmation. We didn’t have time for that. If TTP isn’t treated immediately, it will kill you. That night, Sept 19, the OR team was called back in and into my room to do an emergency central line in the jugular vein of my neck. I was given a local (lidocaine) and surgery was done while I was awake. It was a bit traumatizing.

The next morning, Saturday Sept 20 at about 4am, I started treatment for TTP. The treatment for TTP is plasmaphoresis, or plasma exchange. Basically, this is where your blood is pulled out of your body, filtered, and your plasma is spun out as it is bad. As this is done, they spin donor plasma that is clean back into your body. So out with your bad plasma and in with new donor plasma. This transfusion process takes 4-6 hours to complete and is done through the central line in the neck.

I did this process every day for 5 days. My platelets started coming back up, I was still getting blood transfusions, but things were starting to look up. My liver and kidney functions were improving. I was feeling a million times better.

Sept 25, it was determined by all specialists that I was ok to go home and to check in for blood work several times a week with all specialists. I was doing ok. I was on new meds. I was relaxing at home. And checking in with my doctors for multiple appointments. I was going to make it!

This is where things take a spin!!! Nothing is normal with my body. Just when they think things are figured out, my body does a tail spin and puts all the specialists in shock again.

Friday, October 10, I was feeling weird again. I had gotten my lab work back that day and my platelets had totally crashed. So the renal doctor suggested I meet her at the hospital for direct admit, just in case.

When I got to the ER, the ER doctor was waiting for me at the door. He had already been educated on TTP and was told to get me in a room ASAP. So that he did. I was admitted. My renal doctor finally comes in and tells me that they had just received the final results for the TTP tests done in September. The kicker? My tests came back negative for TTP. We were back to square one.

I was in the hospital until Sunday, October 12^th, then released to go home and rest. Not do anything except go to specialist appointments.

Hold onto your pants! This is where the spin starts!

Wednesday, October 15, I go to an appointment with my mom at the hematologist/oncology office. I had a bad feeling about the appointment. You see, Dr Le and I had not seen eye to eye many times and we had rubbed each other the wrong way more than once. She is very abrasive and we all know that I don’t do abrasive well.

This appointment, she came in the room and I could immediately tell she was different.

She sat down and explained that she had been racking her brain since I was in the hospital originally as she wasn’t comfortable with the TTP diagnosis, but she had not been able to pinpoint what was wrong with me. In a sleepless night, it hit her. I needed to be tested for Atypical HUS, or Atypical Hemolytic Uremic Syndrome.

http://ghr.nlm.nih.gov/condition/atypical-hemolytic-uremic-syndrome

So, she got together with her specialists buddies at a conference that Tuesday before my appt and presented my case to them. She wanted to know what they thought. It was a unanimous vote between them that I more than likely have aHUS.

Atypical HUS is scary stuff. It’s not for the light hearted to read, for sure. My hematologist had never diagnosed it before, nor had her mentors. There are only 300ish cases in the USA with the diagnosis. Most people with aHUS go undiagnosed because it is so rare and they die from end stage renal disease. I got blood drawn for the genetic testing for aHUS on Thursday, October 16.

Because I have been in/out of hospitals, doctor’s offices, etc…..I have no veins left. They are all blown and not useful. It was taking 3-10 tries to get a vein for an IV or even a blood draw.

On Thursday, October 23, I underwent surgery to have a Power port installed in my chest. This will give them one shot access for IVs and blood draws.

On Friday, October 24, the genetic testing was returned. I tested positive for Atypical HUS. We needed to get the ball rolling on treatment, ASAP.

Atypical HUS is a genetic mutation. I have had this my whole life. Currently we believe that the trigger factor that brought it out was the chemotherapy drug that I was taking for another illness I have called Crohn’s Disease. My body just couldn’t handle the medication and this triggered the aHUS to come to surface.

There is no cure for aHUS. There is currently only one treatment for it. It is IV infusions once a week for 5-6 weeks, and then every other week indefinitely. This drug is called Soliris. It’s pretty new to aHUS, so the side effects aren’t well known.

On Monday, October 27, I got vaccinated for Meningitis, Pneumonia, and Tetanus. I also started very strong antibiotics to protect me so that I could start the treatment before the vaccines fully activate.

Wednesday, October 29, I started Soliris treatment for aHUS.

While I would like to be very hopeful (and I am trying to be), the rare-ness of this disease frightens the hell out of me. The new drug is scary. Not knowing side effects are scary. Not knowing what my future holds for this disease is scary.

This is my story to present date."

As you can see, those few months and every day since then have been a whirlwind of treatment, testing, emotions, etc.

aHUS basically rules my life.

I go to treatment at the hemotolist's office every 14 days. I receive the max dose of Soliris possible at this time, which is 1200mg. If we dip below that, my kidney levels and platelet levels start going crazy.

This type of treatment will continue for the rest of my life. If my levels start getting crazy on this dosage, I will be required to get treatment every 7-10 days, instead of every 14 days.

I am being proactive within the aHUS Foundation, the support groups, etc. I am hoping to spread awareness of this ultra rare disease and basically just do what it takes to survive.

Life with aHUS is incredibly hard. You see, the treatments give me migraines. I was getting them about 4-5 days a week before we increased the dosage. Now I get them about 1-2 times a week. I never even had headaches before this all started. It's been a rough road. Treatment wears me out. I am almost immediately exhausted, my blood pressure shoots up during treatment. It's not fun getting an IV in your chest. It's mentally and physically draining to go through this.

With all of that said, I am so thankful to be here still. I am thankful that I do feel a lot better. I am thankful that I have a great team of specialists on my side. I am thankful for the family that hasn't left my side through all of this. I am thankful for the few friends that are there as well. I am thankful to be alive. I am thankful that Soliris is there to help me see good days.

The past year has been a long, hard road for me. BUT I will continue on this path of doing what needs to be done.

Thank you to everyone that has stayed by my side. Encouraged me. Loved me. And even just listened to me complain.

I am going to share a few pictures of that hospital stay and a few others from the past year.

plasmapheresis - the coolers have donor plasma in them

nurse and plasmapheresis machine

plasmapheresis machine

Soliris

me receiving plasmapheresis

central line that was placed in my neck for plasmapheresis

blood transfusion

plasmapheresis machine (the yellow bags above are plasma)

me receiving plasmapheresis

getting Soliris treatment through my Power port

right after surgery to get the Power port placed

PLEASE DO NOT SHARE MY STORY WITHOUT MY AUTHORIZATION. I DON'T MIND IF IT IS SHARED, I WOULD JUST LIKE TO TRACK IT AND BE NOTIFIED AND TAGGED IN IT.

Why I chose a total thyroidectomy over RAI treatment

2015-07-28T19:08:00.002-05:00

This topic is something that I have been thinking about posting for a while, but have kept it to myself. Mainly, because its a hot topic for me and it really gets under my skin.

I want to preface this with a little background about me. Most of you that have known me or read my blog for any amount of time, know that my health is at best....not good.

I have severe Crohn's disease (diagnosed May 2012)
I have/had aggressive Grave's disease (autoimmune HYPERthryroidism) that wasn't responsive to medications. (diagnosed February 2014)
I have a very ultra rare disease called atypical Hemolytic Uremic Syndrome. (diagnosed September 2014)

I've been through multiple surgeries/procedures/etc for the last 3+ years due to these illnesses.

I have my people that will advocate for me. But I have also learned to be my OWN advocate.

In doing so, I have read anything/everything that I am able to get my hands/eyes on in relation to my diseases. I pride myself in learning about them and being able to educate others on them when needed.

And trust me, with an ultra rare disease (and the others as well) I have had to educate even regular doctors and specialists on my disease.

I don't claim to be in the medical field or be an expert on it all. I don't claim to know EVERYTHING there is to know. But if I don't know I will research the hell out of it and ask questions to the appropriate channels.

So, this brings me to my topic: why I choose a total thyroidectomy surgery (total removal of the thyroid) over RAI, or radioactive iodine treatment.

I researched each of these very closely. I reviewed the pros and cons of each. I asked around for personal opinions. I seeked medical advise.

One thing I will tell you is that "most" of my doctors suggested RAI treatment so that I wouldn't have to go through another round of anesthesia and another surgery.

I got 2nd opinions. I did my research. I learned the ins and outs of both.

When I was in the testing phases of the thyroid disease. I had to do an uptake scan. I thought to myself, this will be no big deal. I will go in, swallow a pill, go back later for a series of scans. I've done a million (that's an exaggeration, I've really only done 8,427 ha!) other tests in my health history and this one appeared to be easy.

And it was. That is until I got to the radiation room at the hospital to get this tiny pill. Then I became a little terrified.

I was taken into a room for radioactive materials. Ok, no big deal. X-ray room. No. I sat in this room with my husband. Finally a radiologist appears. He is in full gear. Hazmat outfit, gowned head to toe with gloves and shoe covers and a mask. I start to panic. He goes into the back room to get this "special pill". He comes out with a metal tube. He opens it. pulls out another metal tube. Opens it. Pulls out a medicine bottle. opens that and pours the pill in my hand and says...."here, take a drink and swallow the pill. Then dispose of the cup in the radioactive container before you leave."
um what the F? but I obliged and did it. I was seriously scared of what was going to happen with this pill.

Turns out. It's a very tiny dose of radioactive iodine. Blah. I went back the next day for the scans. My thyroid absorbed 93% of the radioactive iodine. This isn't good. This indicates high hyper-thyroid disease.

Then I started wondering, what happens to the remaining percentage of the radioactive iodine that my thyroid didn't absorb. What effects could this possibly have on me?

So I was back to doing my research.

When you are given RAI treatment ultimately, it absorbs high doses of it in the thyroid and this kills the thyroid. You are quarantined from children and pets for a great amount of time due to the radiation. You can't use the same bathroom as others for a while. You must flush twice in the restroom, etc.
Once your thyroid is dead, you are considered hypo thyroid and will take meds for that to level you out.

So, again, I questioned what would happen to the RAI that my thyroid didn't absorb? It has to go somewhere right?

I started asking questions to my specialists and I learned a lot. Most people with RAI, their body absorbs it and they are fine. Some expel it and are fine.

Others have future risks. Like cancer later in life due to RAI, which can include bladder, breast, central nervous system, colon and rectum, digestive tract, stomach, pancreas, kidneys, lungs, melonoma of the skin.

This is where I stopped. I have Crohn's disease which carries a higher risk of cancer to the colon/digestive tract. I also have family history to stomach and pancreatic cancer.

Do you see where I am coming from when I say that RAI Treatment was not an option for me?

To me, this was a no brainer due to my health history and potential health issues in the future.

I went in, had my total thyroid removed. Spent the night at the hospital, had the drained pulled the next day and went home. 1 week later I was back at work and starting the thyroid replacement medications.

Yes, I had ANOTHER surgery. Yes, I lost a very important gland that our body needs. Yes, recovery (mainly just the voice issues) haven't been a blast. Yes, any surgery is risky.

I get it.

Does this make me deserve to be questioned about my decision for MY health? Or does this justify me literally being told that I am stupid for choosing a total thyroidectomy over RAI treatment?

If you have thyroid issues and surgery/RAI treatment have been mentioned, I highly recommend that you do your research. You ask questions. You do what is best for YOU.

I am adding a few links to this that have been very beneficial for me during this process. Please read them.
Join the FB groups and visit the website for Stop the Thyroid Madness. Ask questions to patients, specialists.

I am always open to answer any questions that I can.

But please remember, I am not a medical professional. I will answer questions to the best of my knowledge and research. If I don't know the answer, I will refer you to a place or person that does.

Please also note, the above only pertains to my situation and health history. What you choose for yourself is a very personal opinion and one I will not ever judge you for. Please give me that same respect.

http://www.stopthethyroidmadness.com/rai/

http://www.ncbi.nlm.nih.gov/pubmed/19281429

What she said was exactly what I needed to hear today.

2015-05-18T18:38:00.000-05:00

Every time it is time for an infusion, I get a "this f*cking sucks! why is this my life?" attitude. I hate going, I hate the side effects, I hate getting an IV in my chest, I hate the unknown of the disease, I hate the unknown of the drug. I hate everything about this disease and what comes with it.

Now, I know you are thinking, this is going to be a "woe is me" post. You're wrong. :)

Yes, I have crappy stuff that happens with atypical HUS. Yes, I have a non-curable, extremely rare disease. Yes, I was in multi organ failure 8 months ago. Yes, I will have to get treatment at max every 14 days to keep me alive, for the rest of my life. Yes, it sucks.

I won't lie about those parts.

But what I would like to talk about today is the support groups, the people you meet (in person and via the internet). The people that help you see that you are not alone.

Now, I do have other diseases and I have friends with the same. I'm on support groups for those 2 as well. They are so very helpful and understanding. And I've made some amazing friendships through them.

However, this time, I am discussing the people I have met since being diagnosed with atypical hemolytic uremic syndrome.

Like I said above, I am normally pretty irritated and down when infusion time comes around.

I get my infusions at an oncologist/hematologist's office. They have an infusion room in the back that has about 8-10 recliners where people are getting pumped full of IV drugs. Some people that have crazy, serious side effects. Some are people that are dying. Some are people that are very, very sad. There are the angry people. There are the VERY happy people.

The happy people are who I try to always sit near. Since getting treatment anywhere from every 7 to 14 days for the last 7 months, I have gotten to know a lot of the "regulars" there. Most of the people have cancer and are there for chemotherapy that will make them very ill.

I have seen people have bad reactions to the drugs, people vomit, etc. This type of place isn't for the light hearted.

But today, I noticed something different. I started talking to another regular there. We have met many times and always have a few laughs together. She is completely bald. And has had cancer for THREE years. She's been through almost every type of chemo there is.

She is positive. She makes jokes about her cancer, her treatment, her side effects, the fact that she is bald and she makes people laugh. She more than once has stood up and walked over to someone else (while she is hooked up to an IV and pushing an IV pole), just to give them a high five; rub their back when the nausea comes on; just to tell them they will be ok.

Today, after one of the above happened, she was talking another patient through treatment. was telling her just to breath. To picture happy thoughts. To pray, even if outloud. I've seen her pray over them.

Once she got back to her seat, I asked her, "how do you do this?" "how do you not bust out crying with these people?" "how do you stay strong when you are going through so much?"

Her answer was shocking to me, "you learn more in these type of settings than you will learn from most doctors. You learn that there are others to lean on when you need it. Those that get what you are going through. Those that you pick up while they are down, are the ones that will pick you up when you need it. You have to try to stay positive or these diseases will kill you VERY quickly. The power of prayer and the power of positiveness is the only thing that has gotten me through this for so long. So now I get my treatment and I support others."

I got teary eyed and just said "thank you". What she said was exactly what I needed to hear today. I simply could not do these treatments without my support group.

Hope this helps others too.

My health story September 2014 to current

2014-11-10T11:02:00.001-06:00

I have shared this story on two different websites now, so I thought I would share it here. It is on Beautiful Beyond The Pain and on the Atypical HUS website.

I would like to share my story and to keep record so that I can reference it in the future if need be.

Please ask any questions you may have. This has been a VERY scary time for myself and my family.

My health story September 2014 to current

Monday and Tuesday of that week, I was getting worse and assumed that I had a stomach virus because I was now vomiting as well as now having bloody noses and worse headaches than before.

http://www.nhlbi.nih.gov/health/health-topics/topics/ttp/

This is where things take a spin!!! Nothing is normal with my body. Just when they think things are figured out, my body does a tail spin and puts all the specialists in shock again.

I was in the hospital until Sunday, October 12^th, then released to go home and rest. Not do anything except go to specialist appointments.

Hold onto your pants! This is where the spin starts!

This appointment, she came in the room and I could immediately tell she was different.

http://ghr.nlm.nih.gov/condition/atypical-hemolytic-uremic-syndrome

Because I have been in/out of hospitals, doctor’s offices, etc…..I have no veins left. They are all blown and not useful. It was taking 3-10 tries to get a vein for an IV or even a blood draw.

On Thursday, October 23, I underwent surgery to have a medi port installed in my chest. This will give them one shot access for IVs and blood draws.

On Friday, October 24, the genetic testing was returned. I tested positive for Atypical HUS. We needed to get the ball rolling on treatment, ASAP.

Wednesday, October 29, I started Soliris treatment for aHUS.

This is my story to present date.

PLEASE DO NOT SHARE MY STORY WITHOUT MY AUTHORIZATION. I DON'T MIND IF IT IS SHARED, I WOULD JUST LIKE TO TRACK IT AND BE NOTIFIED AND TAGGED IN IT.

Lab results/medical update for me

2014-10-24T15:26:00.001-05:00

Lab results/medical update for me:

I have been debating since I found out this morning on how to post this, so I'm just gonna put it out there. PRAYERS ARE NEEDED.

My blood work is back and I have tested positive for Atypical HUS.

What is this, you ask? well, this is the best explanation I have.

http://ghr.nlm.nih.gov/c…/atypical-hemolytic-uremic-syndrome

There are a lot of big words in there and I understand if you have questions, PLEASE ASK ME. I will answer any and all questions that I am able to.

I had a medi port installed in my chest yesterday. This is to do blood draws from and get IV medications through it.

I am meeting with the hematologist on Monday to discuss the results, get my vaccines, and schedule the treatment.

There is only one drug for treatment for aHUS at this time. It is called Soliris and its done via IV infusion. From what I understand, I will get this once a week for 5 weeks and then every 2 weeks for possibly forever, depending on how I respond to it. It's a fairly new drug and the long term side effects aren't really known yet.

This disease is not common and I am the first diagnosis for my specialist. She had suspected this and took my case to a conference of doctor's to review before my appointment last week. (I do think its kind of neat that my case has been reviewed by multiple doctors at a conference lol). All of these specialists were in unanimous agreement that I have aHUS. After this, we did the blood work for genetic testing to confirm.

So, what do I need from you? I need prayers, and lots of them. Not just for myself but for my family as well. This isn't an easy pill to swallow. There is no cure and I do have all the symptoms/signs. Please add me and my family to your Church prayer lists. Please donate blood/plasma when you can. Please just pray.

discharge day - Going home!!!!

2014-10-12T11:04:00.001-05:00

After a 3 day stay, I am being discharged from the hospital.

My kidney and liver levels have moved to the normal range. WOOOOOOOOOHOOOOOOOO! Praise the Lord!

As of right now, my hemoglobin and platelets are still low, but not critical low.

The discharge hospitalist just came in and told me that I am not to do anything that could cause potential bruising. (Guess I will buy a bubble to live in. lol.)

He did make sure to include that I am not to do any contact sports. Um, yeah, I can pretty much guarantee that will never happen. Only "contact" sports I have are when I accidentally run into a wall, which seems to happen way too often. LOL

So, I will be doing daily blood work to check the hemoglobin and platelet levels. Any drop and I am being admitted again.

Still can't go back to work yet. Hopefully I can soon though!

Happy Sunday! Praise the Lord for this day and what he is doing to improve my health!!!

Quick health update

2014-10-11T20:36:00.001-05:00

Just going to do some bullet point updates on what's going on with my health right now.

I'm back as inpatient at the hospital.

Been here since Friday afternoon. what day is it now? How do we lose so much track of time in the hospital?

Hemoglobin and Platelets both dropped a bit over night.

Kidneys and Liver are at normal levels now.

Doctors appear to be observing me at this time and a little stumped.

I got a "blood bank" bracelet this afternoon with my number that they use for transfussions. So I am assuming something is about to happen.

Hematologist is re-visiting tomorrow to decide about central line placement and plasma exchange.

I will update as I know more.

If you have any questions, please email me at asimm24@gmail.com

Thoughts for Thursday

2014-10-09T12:25:00.001-05:00

http://eastcoastnat.blogspot.com/2014/10/thoughts-for-thursday-life-lately.html

I am linking up with East Coast Chic today for Thoughts on Thursday! This is my first time, so I hope I am doing it correctly.

My thoughts for today:

So irritated that my lab work came back badly, I can't go back to work, and there is a huge possibility that I may have to go back through installation of a central line and treatment again.
This picture is super blurry and poor quality. Sorry.

I have been cooking dinner a lot lately. I like it. Trying new recipes is fun!

I have made honey sesame chicken with rice/orzo and homemade baked sweet potato fries.

Also, Chicken with Goat Cheese Vinegarette with orzo and green beans

I am in love with my fall decorations in the house. I can't wait to make a fall wreath for the front door!

What are your Thursday Thoughts? Be sure that you link up with East Coast Chic!

http://eastcoastnat.blogspot.com/2014/10/thoughts-for-thursday-life-lately.html

Afraid

2014-10-07T13:08:00.000-05:00

(photo above from Real Simple http://www.realsimple.com/ )

When you think about being afraid, it is feeling that you normally don't want to feel. I mean, who really wants to be scared or afraid? It's not a feel good type of feeling for us.

I am slowly learning that it is OK to be afraid. It means that I am feeling the complete emotions of a situation.

I thought this would be a good opportunity to talk about what I am afraid of and why. Would you care to do the same in the comments section?

Things I am afraid/scared of:

health. I am constantly living with the fear that my health is going to take a turn for the worse again (or still). This is something that could happen very easily and this is scary to me. I don't dream of being in the hospital for days, weeks on end. The thought of central lines, IVs, fluids, blood draws, transfusions...honestly scares me beyond belief.

being a wife. I am always afraid that I am not going to be the Godly, amazing wife that God meant for me to be. I want to be a wife that is ALWAYS there for my husband. One that prays with him. One that makes him laugh. One that makes him happy. One that fulfills all of his needs.

being a good employee. Do we always put our best foot forward at work? We all have good and bad days at work. I am afraid that the bad will sometimes over take the good. It is my job to make sure this doesn't happen. I think that I do a good job at this most days.

relationships with others. I am always afraid that I am that friend that I fear. The one that takes but doesn't give. I always do try to be available and give 100% in my relationship with others. But, let's be honest, this is hard. I am afraid of hurting someone unintentionally. This would honestly break my heart.

goals. I am afraid that I will not achieve the goals I have always wanted for my future. I am getting older and college seems so far out and an unrealistic dream. I am afraid that I will never work in the healthcare industry as I have always wanted to do, to help others.

future. I am afraid for what the future holds. Not just health wise, but with everything. The who, what, when, where of it all.

God. I am afraid that I am not living up to what I should be as a Godly woman. I want to find that Church to attend and a Church family to live life with.

I believe that it is OK to have fear, be afraid, be scared...as long as it is not overwhelming us. We cannot let these fears overwhelm us, or they win. We have to do what we need to do and fight for it.

So tell me, what are you afraid of?

Goals for October 2014

2014-10-01T17:41:00.000-05:00

picture above found on google image search

Sitting at home trying to recover has gotten me thinking about things I would like to do and I've been making a ton of lists.

So I would like to put my goals out there and hope that it is the push I need to do these things.

So here we go.

My goals for this October are:

get healthy enough to return to work. Let's face it, I can't stay home long or the house will be remodeled and we will go broke from me shopping.

Drink more water and/or G2. Would like to drink 80-100 ounces of water and/or G2 per day. hey, I need the electrolytes in G2.

Take lunch to work 4 days per week.

~~make a Fall/Halloween wreath for our front door.~~

~~Decorate our front rooms (living room/fireplace/dining room) for Fall.~~

Read TEN books for pleasure. Just mindless reading. It soothes my soul.

Read TWO books on health/wellness.

~~Make Fall breads and desserts.~~ ~~I think I will start this one off tomorrow with some pumpkin bread with cream cheese frosting. My local family and friends should prepare for this, we can't eat them all.~~

Cook more meals during the week. Try new recipes.
~~Chicken with goat cheese vinaigrette, orzo, and green beans.~~
http://www.realsimple.com/food-recipes/browse-all-recipes/chicken-goat-cheese-vinaigrette

Shop around for a sectional sofa for our living room.

~~Buy bookshelves~~ and organize hardcopy books.

~~Carve a pumpkin.~~

Go to a pumpkin patch.

~~Clean out the garage~~

Deep clean the following:
master bedroom
~~master bathroom~~
guest bedroom
office
~~kitchen~~
~~guest bathroom~~
~~living room~~
~~dining room~~

~~Clean and re-organize pantry/laundry room~~

Start Christmas shopping!!!!!

*that's all I have for now, If I think of more, I will add them in*

What are your goals for October???

Confessional Friday

2014-07-18T11:25:00.001-05:00

Needed something to entertain me, so I will do confessional Friday!

I confess....

I am having a hard time with my emotions lately (so if I snap your head off, I apologize in advance) because my blood work and medications are so off.

I am getting a hair cut tomorrow and cannot wait.

I am not excited about my birthday at all. I will now be closer to 40. blah.

I have been keeping to myself lately, because it's easier than risking being hurt by others.

I don't want to clean the house this weekend, but it must be done due to us hosting a party next weekend.

time to be honest

2014-06-23T21:20:00.003-05:00

I've had a lot on my plate lately and even more on my mind. Think it’s time I finally speak up.

I'm not well. I have two auto immune diseases and they are both pissing me off. I have Crohn's Disease and Grave's Disease. Look them up if you are interested.

Right now on top of that, I have a sinus infection. While that may not seem like a big deal to some of you. Think again for those of us with one of the above diseases or both.

I had to make a conscience decision today on whether to take the antibiotic to clear it up, or whether to let it "clear itself up". I wish number two were an option.

Instead, I begged the doctor not to send me to the ER because my heart rate was low and my O2 level was super low. I begged her to give me 30 minutes to get the O2 up as I knew that I was cold when I came in and those stupid finger monitors suck. I knew that I had just taken my beta blockers 2-3 hours earlier, so my heart rate was at its low for the day because the meds were actually working for a few hours. I won that battle. O2 came up, and well....my heart rate stayed at 60.

Instead, I went over the one antibiotic I could take and the new risks that are in research over this one med and my conditions.

You see, not only do I have Crohn's Disease and Grave's Disease, I also have a crazy high heart rate without beta blockers (which is caused by Grave's). I also have a huge inflamed thyroid....that is swelling both on the outside of my throat and the inside, which makes swallowing pills, food, liquid, and spit pretty exciting (this is also the Grave's Disease). I also have low potassium without medications (this is due to Crohn's disease). I also take chemo medication to try to keep my Crohn's under control. I also have days where my brain doesn’t seem to function correctly due to Grave’s. The Grave’s gives me tremors on my right side that are similar to Parkinson’s.

Because of these things, the simple antibiotic that I was given can be life threatening to me. As mentioned above.

http://www.fda.gov/drugs/drugsafety/ucm341822.htm

“ The U.S. Food and Drug Administration (FDA) is warning the public that azithromycin (Zithromax or Zmax) can cause abnormal changes in the electrical activity of the heart that may lead to a potentially fatal irregular heart rhythm. Patients at particular risk for developing this condition include those with known risk factors such as existing QT interval prolongation, low blood levels of potassium or magnesium, a slower than normal heart rate, or use of certain drugs used to treat abnormal heart rhythms, or arrhythmias. This communication is a result of our review of a study by medical researchers as well as another study by a manufacturer of the drug that assessed the potential for azithromycin to cause abnormal changes in the electrical activity of the heart.”

Do you see that above? Because of this, I have to cut my beta blocker dosage in half so that I don’t get a “potentially fatal irregular heart rhythm”. Because of this, I have to monitor my blood pressure and heart rate every 2 waking hours to make sure my heart rate doesn’t get to high because I have to decrease my beta blockers or too low because I have to take the antibiotics. Win-win? More like suck-suck.

And before you ask, yes, I have to take the anti-biotic. Because as mentioned above, I am on chemo pills to suppress my immune system so that something else doesn’t take over. If I ignore a simple sinus infection, things could become VERY bad and VERY QUICKLY.

So for those of you that think I exaggerate or am lying about my conditions, research. Ask questions. Listen to me. Take the time to be my friend or my family, instead of talking behind my back. Either accept that this is my life and stand by me or walk the hell away, because I am tired of two faced “friends” or family. If you think this is about you, it just might be.

I do have some true family and true friends that have stood by my side for me and for Ben (you know who you are). And for those people, I am forever thankful. There aren’t too many of these people that have been there for us through these tough times, but they are there forever. Some of them I’ve never even met. Some of them have been in my life for all of it.

So, while this seems like I am pissed, I am grateful for those that show that they are there. Sometimes all it takes is a simple phone call or text or email or FaceBook message or comment. Just to say you are praying and you care.

I really really appreciate and love the un-conditionals in my life. Thank you!

Medical update - May 21, 2014

2014-05-21T18:26:00.000-05:00

It's easier to post my health updates here and then share the link then to post the update 20 different places.

So here we go....

Went to the Endocronolgist today.

I am still hyper thyroid and my heart rate was high AGAIN.
So we are increasing my dosage on the anti-thyroid pills (much more increasing and she may want to just remove the thyroid; she told me to start considering surgery) and we doubled the dosage on my beta blockers to get my heart rate to a more normal rate.

After that, I went to my GI.

My Crohn's is very aggressive and I have ulcers on my surgery site.....SO, I get to go back on my fun (not!) chemo pills, 6-MP (aka Mercaptopurine). I will start out at a slow dosage and work my way up to where I need to be. I have taken these before and I get extremely nauseous with them. so we start slow this time.

Here is a link on the 6-MP for this interested:

http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682653.html

After 3 months (and another set of scopes) if things aren't better, I will pair the 6-MP with a biologic drug such as Cimzia or Remicade. Cimzia is injections that I would do myself. Remicade is an infusion done at the hospital via IV.

So keep me in your prayers! Hope everyone is doing well.

HEALTH UPDATES!!!

2014-04-24T11:46:00.001-05:00

It's been a while since I have updated this thing.

What's been happening in my world of health?

Well, I had surgery for my Crohn's in August. This past Friday I had my first endoscopy ever and my first colonoscopy since surgery. Fun times, right? At least it's a good nap. lol

After 8 months, I learned that my Crohn's is back and in flare. This time, its attacking my surgery site. More fun. I have a follow up appointment next month and we will decide the plan of action for immuno suppressants.

I learned from the endoscopy that I have chronic gastritis, inflammation of the stomach. So add 2 more meds to the mix.

In other news, I have Grave's disease as well. Man, my body is having a party and its a dirty one. lol

Grave's disease is an auto immune hyper thyroid disease. So, I am currently on anti thyroid meds and beta blockers to keep the heart under control. I have had some very scary times with this thyroid issue. Including a few forced days off work per my doctor's orders.

My thyroid is swollen on the outside of my neck and on the inside. Having trouble swallowing pills and food.

The endocrinologist is having a hard time regulating the thyroid and there has been talk of removal. Not so much fun, but right now, I just want to feel better.

So there you have it. I've had a lot of people ask for a health update lately and this seemed like the best way to post it. Other than this, we have been spending a lot of time with family lately. It's nice living closer to the family.

If you could keep me/us in your prayers for health answers, that would be great! thanks!

30 Things You May Not Know About My Invisible Illness

2013-10-15T14:13:00.001-05:00

30 Things You May Not Know About My Invisible Illness
(this is normally shared during invisible illness week. It is not currently invisible illness week, but I thought it had been a while since I updated and it feels good to get my thoughts out there.

1. The illness I live with is: Crohn's Disease

2. I was diagnosed with it in the year: 2012

3. But I had symptoms since: My doctors believe that I have had Crohn's for 15 to 20 years. I can remember symptoms for much longer than that though.

4. The biggest adjustment I’ve had to make is: that I have changed so much that my friendship circle is no longer the same.

5. Most people assume: I'm exaggerating about my pain, symptoms.

6. The hardest part about mornings are: Waking up. Insomnia is terrible for me. So when I finally get to sleep, I feel like the alarm clock goes off minutes later.

7. My favorite medical TV show is: Grey's Anatomy

8. A gadget I couldn’t live without is: my phone and/or Kindle Fire HD

9. The hardest part about nights are: insomnia. I just would like to be able to lay down and fall asleep. Not toss, turn, toss, turn.

10. Each day I take: 4 pills. This is down from 32 that I was originally taking.

11. Regarding alternative treatments I: do take pro-biotics and other supplements.

12. If I had to choose between an invisible illness or visible I would choose: I don't want to choose. If I had a wish, it would be to have neither.

13. Regarding working and career: I work in mortgage. I work full time.

14. People would be surprised to know: I am so worried about "the other shoe dropping". I am terrified of the if/when with this disease.

15. The hardest thing to accept about my new reality has been: The limitations!

16. Something I never thought I could do with my illness that I did was: become an admin for a great IBD group on FB. (ibdjourneys). I have made so many close friends with IBD.

17. The commercials about my illness: irritate me. I mean, why does that chick look so lost all the damn time? someone get her navigation on her phone.

18. Something I really miss doing since I was diagnosed is: just being able to jump up and go. To hold plans and not have to cancel at the last minute.

19. It was really hard to have to give up: SALAD!!! I still can't get up the courage to try it.

20. A new hobby I have taken up since my diagnosis is: I do a lot of reading. A LOT!!!

21. If I could have one day of feeling normal again I would: go to a party and not leave early, or go on a fun date with my husband.

22. My illness has taught me: That I have more strength than I ever could have imagined, and that while I may be sick, I will NOT let it take over my life.

23. Want to know a secret? One thing people say that gets under my skin is: Try this supplement, or that supplement. I hear it cures Crohn's. really? there is no damn cure! UGH!

24. But I love it when people: reach out to me, just to see how I am, or just to say hi.

25. My favorite motto, scripture, quote that gets me through tough times is: Phil 4:13 and/or "This too shall pass" I repeat these to myself quite often through out each day.

26. When someone is diagnosed I’d like to tell them: to do their research. Research the hell out of it. Ask questions. Don't be shy. Find an excellent specialist.

27. Something that has surprised me about living with an illness is: my pain tolerance. I have an unbelievable tolerance for pain.

28. The nicest thing someone did for me when I wasn’t feeling well was: just hugged me. Sometimes that is all it takes. or a simple text. or email.

29. I’m involved with Invisible Illness Week because: we need awareness (It is not currently invisible illness week, but I thought it had been a while since I updated and it feels good to get my thoughts out there).

30. The fact that you read this list makes me feel: Like you care to learn more about this disease and care to learn more about myself.

A to Z because I am bored

2013-09-05T22:27:00.001-05:00

A. Attached or Single - attached!

B. Best Friend- Ben and my Mom

C. Cake or Pie- cake! yummy!

D. Day of Choice- Saturday mornings

E. Essential Item- My phone or laptop

F. Favorite Color- blues, greens, purples

G. Gummy Bears or Worms- yes please lol

H. Hometown? I'm from Glasgow, KY. I grew up in Irving, TX.

I. Favorite Indulgence- beef jerky. Mainly Robertson's beef jerky

J. January or July - since I have been on Prednisone for a year and a half, I would have to say January since I get hot so easily

K. Kids? No!

L. Life isn't Complete Without- my family

M. Marriage Date- 12/03/11

N. Number of Brothers and Sisters- 1 biological brother, 2 step sisters

O. Oranges or Apples- neither!

P. Phobias / Fears? losing one that I love or having someone I love be chronically sick.

Q. Quotes- This too shall pass. (I tell myself this daily right now, sometimes every hour or minute)

R. Reasons to Smile- I always have a reason to smile. Laughter is the best medicine. I try to laugh a lot.

S. Season of Choice- Spring

T. Tag 5 People- Anyone who wants to do it.

U. Unknown Fact About Me: I have lost a lot of people that I thought were true friends since being sick. It's sad, but its not hard to reach out to someone with even just a few caring words.

V. Vegetable- okra (is that a vegetable?)

W. Worst Habit- smoking

X. Xray or Ultrasound- I have had so many of both in the last year and a half that I swear I glow now

Y. Your Favorite Food- scallops. yummy!

Z. Zodiac Sign - Leo

Surgery (Aug 9, 2013) and post op

2013-08-28T14:35:00.001-05:00

Well, now that I had my first post op appt, I figured its time for the full update on surgery and post op.
This may be a long post and graphic, but I want it documented for my own reasons.

My surgery was scheduled for August 9, 2013 at 2:30pm. I had to be there at 10:30am that morning for blood tests and IV hydration. I arrived at 10:30am and was checked in and in the pre op room pretty quickly. I was given an IV and blood draws. And we waited. Me, Ben Schlaht, Mom, Dad, David, and Ben Simmons. I was taken back for surgery around 3:30pm.

so now is where it gets graphic.

I knew that I had scar tissue built up (as it was causing obstructions/blockages) in the small intestine at the terminal ileum. We knew it was bad as a scope wasn't able to go through, what we didn't know is exactly how bad it was. My surgeon pulled all of my intestines and colon out to do a run through to find all the damaged areas. The area that was diseased was described by my surgeon as being "sausage feeling" meaning hard. When he started examining it further, it literally started crumbling in his hands. This is NOT good. Had I put off the surgery any longer, they believe that I would have had a rupture and gone septic, which can ultimately kill you.

Once he started removing portions, the diseased tissue just kept getting longer and longer. I also ended up having a ton of blood loss as the mesentery artery started crumbling as well. I lost a lot of blood. All in all, I lost around 18 inches of small intestine, several centimeters of large intestine, my appendix, and my ileocecal valve. And again, a lot of blood.

My surgery was supposed to last about 2 hours and that time was doubled once they were in there.

Waking up in recovery did not come easy for me. They had a hard time pulling me out. When I finally came to, what my family describes to me makes me cry, but oh so thankful that I made it. I was gray from lack of blood and looked dead. This scared my family a lot.

I ended up staying in the hospital for a full week. I went in on a Friday morning and was discharged the following Thursday evening at 9:20pm.

Recovery has been trying. I had around 20 external staples in the abdomin. I have to sleep in a recliner as I can not lay flat. I still have a lot of surgical pain. I can't lift anything over 5 pounds (even a gallon of milk weighs more than that!!!). I shouldn't be bending over too much. I am only able to drive when I am not taking pain medication. And I sleep. lots. I am currently down 16 pounds since surgery. I have no appetite and have to force myself to eat. I have no energy.

I am almost 3 weeks post op. Most days I feel like I have been hit by a truck. Mornings are VERY hard.

I still have a long way to go. I still have at least 4 weeks of being off work.

My external staples were removed today. I have some non metal type staples that are internal that will stay forever. I am making an appointment with my GI for next week, as I will have to go back on all of my immuno-suppressant meds (HUMIRA, 6mp, etc). It is believed that my Crohn's Disease is VERY aggressive. I will more than likely need to remain on the meds for the remainder of my life.

That is what I have for now. Please please please continue to keep me in your prayers.

Thank you to everyone that has been there for us and reached out to me. I miss people, I miss my friends.

and most importantly, I want to thank my wonderful husband, Ben. He has been amazing. Some of the stuff that he has had to see and do during this, most people couldn't handle. He is my rock.

Also, my mom! She is a God send! I scared the shit out of her more than once. She has been there to dry my tears, talk me off the ledge, drive me to Dr appts, and listen to me when I think I can't do this anymore.

My dad! He drove 13 hours each way to be there for my surgery. He ended up staying about 6 days. He sat at the hospital and helped/talked to me while others had to work. I love him so much and it meant so much that he was able to be here for me.

I would be lost without Ben, my mom, my dad, and David. Thank you all so much!

surgery update

2013-07-19T17:42:00.002-05:00

Here we go. Today was my final surgeon appt before surgery in 3 weeks.

When I last saw my surgeon he was going to spend time reviewing my scans/tests...one by one. This is because I have had pre-cancer polyps removed during my colonoscopy for 2 years in a row. His fear was that I may need part or all of my colon removed during surgery.

Today he did say that he thinks my colon is fine. He will check it out during surgery just to make sure.

I have had some complications recently that made the surgeon and I discuss moving my surgery up. These complications include randomly vomiting and partial obstructions. I had a partial obstruction while at work a few days ago. I needed to be laying on my left side with a heat compress....instead I sat at my desk and breathed through it before vomiting. It's not fun nor easy to deal with. and it can be extremely dangerous.

My surgeon and I made an agreement that I will think about it over the weekend and call him Monday if I would like to move my surgery up until next week.

I would really like to keep my original surgery date of August 9th if possible. I don't want to screw work over and I have some personal things that I would like to take care of.

I am now asking for your prayers. We need all that we can get right now.

time for a medical update

2013-06-29T10:14:00.002-05:00

Thought it was about time for a little update on my health status...

I went to UT Southwestern this past Monday, June 24th for a second opinion. It was determined that I am steroid dependent and that I do in fact need surgery soon. Because the doctors don't want to do surgery while I am on steroids and my body is dependent on them, I am weening down slowly.

I am only on 5mg of Prednisone, and have been at that dosage for 6ish months (total of 14 months on Prednisone at different dosages. The max you should be on it is 3 months). However, any time I have gone from 5mg to 2.5mg I have gone into full flare again. So for now we are going down 1mg a week until I am completely off. This should take about 4 weeks with hopefully no complications.

I meet with a surgeon this Wednesday, July 3rd for a surgery consult and to schedule a surgery date. This should be happening within the next month to month and a half.

It is major surgery. They will start laproscopic and if it looks worse than they thought when they get in, they will have to completely open me up. They will be taking the diseased portions of my small intestine and also my ileocecal valve.

The plan is for me to be in the hospital for 4 or 5 days. The recovery time is about 6 weeks.

Please keep us in your prayers.