So I Guess I’m Going to Mayo Clinic?

On February 22nd, I had an appointment with my electrophysiologist, and in the end we decided I am going to go Mayo clinic. Instead of spending my first spring break of college somewhere on a beach, I’ll be in Minnesota going to doctor’s appointments. Somehow that doesn’t sound as fun.

I’ve talked about my Inappropriate Sinus Tachycardia before, and how my electrophysiologist believes I should have a surgery to try and correct it. I am currently on the last medication available for IST, and it has failed. My IST is much more severe than most people’s, and my doctor believes my only option is to have a complete ablation of the sinus node (aka they want to burn the shit out of my heart). This will most likely leave me with a pacemaker. At this point I’m not super convinced I want to have the surgery. For a long time now I’ve thought that I may have other autonomic issues on top of IST, and from what I’ve read if that is true this surgery could actually make it worse. This is also a very controversial procedure, and only two places in the country perform more than a handful per year, one of them being Mayo Clinic.

Back in October of 2016, I applied to be seen by Mayo Clinic physicians, and was rejected. They didn’t give an explanation so I have no idea why that was. I’m glad I’m going to be able to go, because to be honest the past three week have been really bad. I started to decline around 10 weeks ago, but it’s gotten increasingly worse in the past three. I’ve been missing quite a bit of school, and I haven’t been able to function at all. This has been a major leap backwards. My last round of quizzes did not go well, and I have two exams as well as a lab practical next week over information I was not there to learn. I am so incredibly frustrated and very sad. I’ve been here so many times before, but it doesn’t get any easier.

I worked really hard last semester and I did incredibly well in all of my classes. My health was pretty good, until the end of the semester, which was a huge blessing. Unfortunately this semester started off bad, and has only gotten worse. It’s so hard to constantly give your all in school, and not reap the benefits because your health sabotages you. Not to mention none of my professors ever respond to my emails, so I have no way of catching up while I’m gone. When I do try and study, I’m not retaining any of the information and can’t concentrate due to brain fog. I feel stuck and powerless.

I am really grateful that I’ve been accepted by Mayo Clinic, and that I got an appointment pretty fast. I’m hoping I’ll be able to see gastroenterology and maybe immunology while I’m there, but I haven’t heard anything from those departments yet. I’m also nervous to go, since I have always felt that if Mayo can’t figure all of this out, no one will be able to. I’m trying to stay hopeful, and positive that we may have some more answers sooner rather than later. I hope you are all doing well!

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November Health Update

Quite a bit has changed since my last health update!

I’ve now seen my electrophysiologist two more times, even though he originally wanted to refer me on. I went on flecainide acetate for a few weeks, but it made me incredibly hypotensive and I couldn’t properly function on it, so we decided to discontinue it. I’m currently on Digoxin, and my symptoms have improved. A major part of the improvement is due to coming off the flecainide acetate, but I do think the Digoxin may be helping some. I saw him on Monday, and we are going to continue to digoxin and possibly increase it, depending on the results of my endoscopy.

At my last appointment, he brought up the possibility of having another electrophysiology study, but this time actually ablating my sinus node. I didn’t have an ablation last time, because I don’t have SVT so technically nothing is structurally wrong with my heart. The complete ablation of the sinus node for people like me who have IST, a form of dysautonomia, results in a pacemaker over 50% of the time. To me, this would be a last case resort. I’m technically on the last medication that is prescribed for IST, so if it doesn’t continue to work I’m kinda screwed. However, I’ve read all of the research papers I can get my hands on and this procedure is often contra-indicated for people with dysautonomia. As of right now I don’t really view it as an option, but if things get worse it may have to be a possibility.

On Wednesday, I had an endoscopy mainly to test for systemic mastocytosis. I had no visible abnormalities, which we expected. This was my third endoscopy, so we were basically only doing it for the biopsies, which they did a ton of. The procedure went really smoothly and quickly. I had felt absolutely terrible on Tuesday, but even with the anesthesia I felt okay Wednesday. Thursday and Friday however were a whole other story. I felt like I was being stabbed in the stomach for most of Thanksgiving, and Friday I had a migraine most of the day. I tried by best to celebrate and push through, even though I felt quite terrible.  I’m moderately nervous for the results, since having systemic mastocytosis is kind of a big deal, but on the other hand having yet another false test is going to be frustrating. You really can’t win for losing with chronic illness.

I keep having really bad days/weeks and then really good days/weeks, so it’s been hard to judge the pattern of my health. I’m incredibly grateful for the good days, especially when they’re proceeded with a terrible day. I think I’m doing a pretty good job of handling it all, but I am pushing myself pretty hard. Having a few days off of school for Thanksgiving has been nice, and before we know it, it will be Christmas break. I still feel like I’m slowly declining, but I also feel hopeful due to the new doctors I’ve added to my arsenal.

How’s your health been?

I hope you’ve all been having a good November!

 

Adapting with Chronic Illness

Sometimes friends and family members will see me and say, “wow you must be feeling better!” What they don’t realize is that some days I’m not doing any better than I was six years ago, I’ve just adapted. In the beginning it was so incredibly tough to even get out of bed. I was a child, and had never truly had to persevere before. At the time, I was trying my absolute hardest to function, but it was all new to me. Now I’ve adapted. I go to school and church with extreme pain and fatigue. I do homework as I run back and forth to the bathroom or grimace in pain. When I’m in a state that I’m able to force myself to function, I seem very “normal.”

This semester I’ve made it to class more than I ever have in the past six years. As of now, I’ve only missed four class periods total, and three of those periods were for doctor’s appointments. Part of this is because I felt decent at the beginning of the year, and so it was fairly easy to make it to class. Now I’m struggling more, but I’m still forcing myself to go to school. Just because I’m able to function, doesn’t mean it isn’t hard. Yes, some days it is easy, and I feel incredibly lucky to have easy days since so many people do not get them. I used to not get easy days, and it was so incredibly hard. However, some days I’m trying not to pass out in the middle of math class, or holding down vomit in history lecture. My body is still very broken.

I’ve also taught myself how to “pass as abled.” I can put on the makeup and clothes, do my hair, and paint a pleasant expression on my face. Most people aren’t very observant and buy it. By now I should have an Oscar for my performance! However, if you look really close you can see the exhaustion in my eyes and hear the slight pain in my voice slipping through. One thing chronic illness has taught me is to be observant. Things are often not as they seem, and if you really pay attention to people, you can pick up on so much. I’ve learned how to appear fine, but other people have not learned how to see through it.

In many ways, I’m so glad I’ve adapted! I’m able to handle everything chronic illness has thrown at me, and I have strength to continue to fight it. I’ve learned how to be more functional, and now I’m able to continue my education. Sure, I don’t do anything else but go to school, do homework, and recover from it all, but I enjoy succeeding in something. It does make me sad sometimes that this has become my normal. Pretending to be fine, when your body doesn’t work right is exhausting, and can be incredibly lonely. At times, I’ve felt angry that I even had to adapt, that I had to accept this life as “okay.” Chronic Illness is a constant cycle of grief and acceptance, and adaptation is a huge part of that.

 

Gastro Appointment and Action Plans

I had a super busy week last week at school with quizzes, exams, and a lab for biology. I felt way less prepared for these tests than I did for my first round of tests, but luckily I actually did really well on everything. On top of all of the school stuff my health is continuing to spiral, and I’m having near syncope episodes where I become disoriented everyday, and they’ve gotten more severe.

One positive thing that happened last week is that I finally saw a new Gastroenterologist! I really liked him, which to be honest I wasn’t expecting to, since I saw two other doctors in that practice when I started to become chronically ill, and they thought I was faking it. He however, was very kind and had a few ideas on where to go next. He thinks I might have post-infection IBS, since I had some weird blood work five years ago that said I had a parasite. I thought this was a false positive since the parasite mainly lives in Africa, but apparently although possible it is incredibly uncommon for that to happen. If i did in fact have the parasite, then it may have damaged my GI tract causing the IBS.

I’ve actually never been diagnosed with IBS, even though all of my gastro symptoms fit the definition. He wants to do a few more tests before calling it IBS, since IBS really is just a nice acronym for “something in your GI tract is messed up but we don’t really know what.” I had some blood work and an x-ray, that I should be getting the results about at the end of this week. If everything looks good, we’re probably going to do an endoscopy since he thinks I might have systemic mastocytosis. I’ve done the tryptase test for MCAS, and it was negative but apparently the best way to diagnose it is by a biopsy of the small intestine, if you have gastro symptoms, or a bone marrow sample. Since I have a ton of gastro symptoms and doing an endoscopy is much less invasive than a bone marrow biopsy, we’re probably going to do that. If the regular endoscopy also fails to bring any good information, we’re considering a capsule endoscopy to make sure I don’t have any disease activity in the part of the small intestine that you can’t see during a colonoscopy and endoscopy.

If you missed my last update, I talked about how I tried corlanor for my IST and it really didn’t go well. This past weekend my doctor had me try it again, but now he only wants me to take it once in the morning every other day. I tried this on Saturday and it made me feel really crappy again, so I definitely won’t be taking corlanor anymore. The electrophysiologist also doesn’t want to see me anymore (even though I only saw him once) and is referring me to the research hospital that is attached to a med school in the city. His office has yet to send the referral, so I hope they hurry up since my heart is becoming quite an issue on a daily basis.

I’m sorry this is quite a Debby-Downer post, but it’s just reality at the moment! I am feeling positive about the new gastroenterologist and I’m hopeful that the referral for a new cardiologist will be helpful. I’ve been pushing myself so hard to make it to school, and get really good grades, so I know my blogging hasn’t been the best. Being chronically ill and being a student feels nearly impossible the majority of the time, so doing anything extra has been out of the question, especially the past two weeks. I’m hoping to post more regularly soon!

I hope you all are doing well!

Being Successful in School while Chronically Ill

School and chronic illness are two things that do not mix well. From the constant absences, and annoyed teachers, to the  piles of make-up work the whole experience can be really difficult, and quite overwhelming. The majority of the time I’ve been chronically ill (roughly 5 1/2 years) I’ve also been in school. Here are some of the things I do to try and be successful in school:

  1. Organize Everything

Having a planner or agenda is important for anyone in school, but is essential for those who are chronically ill. Having to keep up with regular due dates, make-up due dates, and study hall times can be overwhelming. If you have brain fog like I do, it’s also easy to forget things, so writing everything down is important. It also helps you prioritize certain things in your work load.

2. Email Your Teachers

Inevitably some teachers aren’t going to like you if you’re absent all the time. It causes them to have to do more work and they feel like you’re a nuisance. Emailing all of your teachers when your absent helps show initiative and helps you get school work even when you’re not there. I also find that telling them when you’re in the hospital is important so that they know you’re definitely not going to be in class for a few days. Keeping everyone is the loop is the best to make sure you’re not falling too far behind.

3. Push Yourself…

There will be days that are ROUGH. You know you have an exam, a quiz, and a group project presentation that day but your body is rebelling. Sometimes when it feels impossible, you actually can do it. It will suck, it will be painful, but it is possible. You probably won’t have a good day, but you tried as hard as you could.

4. … but not too far

There will also be days that it is impossible. Do not ignore big warning signs from your body just to make it to class for a test. Do not send your body into a huge fit (well a bigger fir than it already is) because of the inner and outer pressure to conform to societies ideas of “successful.” A fulfilling life does not have to include a formal education or a long career. Also missing a few days of school will not keep you from getting the things you want. Will it make it harder? Sure. Will it take longer? Probably. Doing what’s best for your body is the most important thing.

5. Take Advantage of Disability Services

There is no shame in asking for help. Although it will never be an equal playing field between you and your peers due to your chronic illness, disability services can help tremendously. They help especially when it comes to absence policies and dealing with teachers who don’t understand your situation. You have rights and your school cannot infringe upon them just because they want more money from the state. **

 

These are my five tips for being successful in school while chronically ill. Do you have any tips for other students with chronic illness? Let me know!

 

 

** Schools often have a 90% rule where you have to be there 90% of the time and if you aren’t you have to do make-up hours. They want you to be there that much because for every student that makes it to school 90% of the time they get a certain amount of money. Not only is it ableist to force students to stay before and after school if they are absent due to illness, it is also illegal.

 

Starting School & Declining Health  

This week was my first week of being a full time college student!

I’m taking five class, which translates to 13 hours. Since this is my first semester (besides the one summer class I took) I’m taking the basics: Algebra, Biology and Lab, US History, and English.

This week has been a bit of a whirlwind. My health has been declining some, so I had a doctors visit on Monday after class. ( Warning TMI) She’s putting me on a new medication to hopefully help with a new problem I’ve been having-  passing undigested food in my stool. I really need to go see a gastroenterologist again, but I honestly just don’t want to. I know I probably need to do another colonoscopy/endoscopy and I don’t want to do that. For now I’m going to try the Colestid and see what happens.

Monday traffic at my school was TERRIBLE! I left my house at 9:15 and my class doesn’t start till 10:00, so I thought I had more than enough time. It only takes me 13-15 minutes to get there, so I had thirty minutes to park and find my class. When I got to the parking lot there were at least 150-200 people circling the parking lots looking for a spot. I honestly wasn’t really sure what to do. I circled every parking lot at least three times, and as the clock creeped closer to ten I got really nervous. Professors are understanding when people are late on the first day, but I still didn’t want to make a bad first impression, even if there were circumstances out of my control. Luckily I saw a guy come out of the school and I was able to stalk him and take his spot. That was at 9:55 so I had five minutes to walk tot the other side of the school and find my class. I made it to class on time though, which seemed like a miracle.

The rest of the week I gave myself an hour to get to campus and parking wasn’t really a problem. I had to walk really far, and wait around an hour for class to start, but at least I had a spot. My classes have been good, and overall haven’t given me very much work. I’m sure that will change soon though. Over the weekend I have some work, but since it’s labor day weekend it isn’t anything unmanagable, especially since I have three days to do it.

With my health getting worse, the reality of being in school and being chronically ill really hit me mid week. I’ve done the whole being chronically ill and going to school thing for 5 1/2 years and it’s getting old. I feel like I work so hard and get nothing in return. I’m trying to be positive and go into the new school year optimistically, but when things go south it feels more painful when I’ve been optimistic. Another big change is being around people the majority of the day. Since I’ve spent most of my time alone since becoming sick I’ve developed some social anxiety that makes being in public for extended periods of time emotionally exhausting (not to mention physically exhausting from everything else) and overwhelming.

Even if this is going to be a rough semester like the years before I’m grateful to be in a place at the moment that at least let’s me try to continue my education. Back in May there was no way I’d be able to go to school at all. It’s crazy how much my health can change so quickly. It declines rapidly and improves rapidly, I just never know which one to expect! Are you in school/ working? Do you have any Fall plans?

Let me know!

Lots of Love,

Alyssa