Another Day, Another Diagnosis

I feel like I start every post about my health off with, “a lot has happened in the past month,” but a lot of things keep happening!

The clinical trial I was in was approved for open label, which means I was able to take the medication and know that I was getting it, and not the placebo. Unfortunately, it made me violently ill and caused horrific pain, so I wasn’t able to be on it for very long. On the upside, I felt a lot better once I stopped the medication! I also stopped taking Corlanor since it wasn’t helping my POTS symptoms at all. Right now I’m trying to find a good cardiologist or autonomic neurologist to manage my POTS, but it is much harder than you’d think.

After being diagnosed with fibromyalgia, I felt as if it wasn’t quite the right diagnosis. Most of the suggestions for fibro patients were not doing anything to help me, and I had a lot of weird symptoms that couldn’t be explained by fibro. My GP referred me to a geneticist because she wanted me to have an evaluation for Ehlers-Danlos Syndrome. He was very knowledgable about EDS and spent most of his career focusing on it. In the end he diagnosed me with EDS and suspects hyper-mobility type, but we’re still going to do the genetic testing to rule out classical and vascular, although it’s unlikely I have either one of those. Honestly, I’m very disappointed to have another diagnosis but I wasn’t surprised in the slightest. At least we can be confident that it’s the right diagnosis this time! I’m currently looking into what doctors are good for EDS in my area, and I’m also looking for a good physical therapist to hopefully help control some of the pain.

… and because for some reason I seem to like getting multiple diagnosis’s close together, I saw an allergist that the geneticist recommended, and she diagnosed me with MCAS. If you’ve been reading my blog for a while then you know I’ve had doctors go back and forth on whether or not I have MCAS for quite a long time. I’m already on a lot of antihistamines and cromolyn sodium which controls it fairly well. I’m definitely not a severe case, but without antihistamines things are pretty miserable. She wants me to start Xolair shots in hopes it will improve my MCAS symptoms enough to come off of all or most of the antihistamines I’m taking. I’ve heard mixed things about Xolair, but I’m willing to try it in order to attempt to take less medications and have less allergic reactions.

I’m hoping this will be the end of the diagnosis’s if not forever, at least for a long time. Having a diagnosis for any of my health issues still feels surreal to me after being undiagnosed for so long. I feel like I’m being directed to better doctors to manage my care, which seems really promising that things might improve soon. Now that we have all the diagnosis’s we just need to figure out what to do to actually treat what’s going on!

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My Experience Getting a Disabled Parking Permit

I’ve questioned if I’m “disabled enough” for a disabled parking permit for a long time. On the outside I look like your average eighteen year old girl, so people tend to downplay the severity of my chronic illnesses, and I was afraid to ask for help because I didn’t want to be laughed at or accused of exaggerating. Even though many people who have the same conditions as I do use a disabled parking permit, I was still apprehensive about asking for one.

My mom and I have been discussing this for quite a while, but when I found out I was going to college and living off campus, the conversation became more serious. The college I’m going to is very large and they have a huge parking issue. Even if I went to class two hours early to find parking there’s still no guarantee I’d find a spot, especially since students who live on campus are prioritized when it comes to parking. When I was going to community college I would get to school an hour early because the walk from the parking lot to the building, and then from inside the building to my class would take so much out of me that I would feel awful and needed time to rest to regain some energy.

Honestly, going through that routine everyday was incredibly tiring physically and very daunting every morning. Not even being able to get to class at a community college without at least a 20 minute break to recover was a reality check for how bad things really were. I would use all my energy to go to class, and then would crash and feel even more terrible when I got home, to the extent I wasn’t able to do anything at all for the rest of the day. Then things got even worse and I wasn’t able to do it at all.

I was really nervous to ask my PCP about the parking permit, especially since I just recently switched to a new PCP (my old PCP I had seen for six years and she ran out of ideas so I decided to get a fresh pair of eyes on my situation). However, she is pretty well versed with the whole Dysautonomia thing and everything that goes along with that, and she agreed that it would be beneficial to me especially in the school setting. Outside of school, I plan on only using it on really bad days. If I’m feeling decent then I won’t use it, or if the nearest available parking spot isn’t too far, I also won’t use it.

When we went to the DMV to actually get the permit I was nervous that they would think I was faking it, since I don’t fit the physical description of what most people who receive these permits fit. However, the man was very nice and everything worked out perfectly! I sat down while my mom stood in line, and then went up to the desk to give the man all my paperwork and my ID. I started to feel really terrible right after we got there, so when the man asked if I needed to sit down while he looked over everything, I was very grateful. My mom stood there while he looked over everything and got the placards, and then we were done! The whole process took maybe twenty minutes, which I was really thankful for since I thought it would be like the DPS where you have to wait for over two hours just to renew your license.

This is definitely not something I want to have to need, but I’m glad the process was easy and painless. I hope actually using it in the real world goes smoothly too!

Clinical Trials and GI Woes and Moving Oh My!

So much has happened in the past month for me health-wise. My Pride Month posts were not as frequent as I had planned, since my health did not corporate this month. I had a lot of ideas for posts for Pride month that I still want to do, they just obviously won’t actually go up in June.

I started taking Corlanor again for my POTS and IST, and this time I didn’t have a bad reaction! I’ve taken it for a month, and haven’t seen any improvement but I’m still hoping I will soon. I’ve been exercising about 3 times per week, which is good! It does take up all of my energy though so on days I work-out I’m not able to do much else besides that which is annoying. My POTS symptoms have only gotten worse since I started making all of the changes they suggested at Mayo, which is really frustrating. At this point I can’t be out of my house for more than one hour before my body starts shutting down. That time is even less if I have to stand or walk a lot, or if I’ve had chores to do around the house.

My GI tract is a bit of a long story. My GI started me on a muscle relaxer for the PFD which seemed to relieve some of the constipation, although I was continuing to feel worse. I had an x-ray done of my abdomen and my entire colon was full of excess stool, so things were not in fact getting better. First they had me drink mag citrate to try and clear it out, but it only cleared a little bit of it. Then I drank colonoscopy prep, which I thought worked for a few days, but it didn’t. My gastroparesis was not a fan of me drinking the prep, because it was a large quantity and you had to drink it quickly, This resulted in me continuously throwing it up every time I drank another glass.

My Gastroenterologist is trying to figure out a long term solution for the constipation since nothing seems to work. He thinks that Dysautonomia is causing me to have really bad intestinal dysmotility. I’ve been WAY more constipated than this many times, but I didn’t have any imaging done so I have no idea how far the stool was backed up then.  I’m so distended I can’t wear jeans or anything without an elastic waistband, and I look a solid five months pregnant. I’m currently drinking more mag citrate in hopes it will work this time, so cross your fingers for me!

In June I started a clinical trial for a gastroparesis medication. It was a double-blind trial that used 50% placebo patients and 50% drug patients. Obviously I can’t know for sure, but I think I may have received placebo because I only became more symptomatic while on the medication. The intestinal issues probably played a role in that too though. The experience has been really interesting, even if it wasn’t helpful for me. It’s still really cool to be contributing to science that could benefit me and others with gastroparesis in the future. I’ve also learned a lot about clinical trials, which will be good to know if I ever participate in another one!

On a more personal and not medical note, we’re moving! I talked about us looking for a new house well over a year ago, but the timing ended up not working out. However, we finally found a house we really like in the city over from us, which is about 30 minutes away. We closed on the new house on the 26th of June, and we put our house on the market on the 22nd. There’s already a contract on our current house so we’re hoping it will sell and close on July 24th. I’m really excited about the move, and feel like the change will be good for me. It’s not far at all from where we are now and I’ll still go to the same college so that’s definitely a plus!

I started an online summer course at the beginning of June and it ends in less than a week. I was nervous that with my health being so poor right now that I wouldn’t be able to do it, but the class has been really easy and the work load is super light. I’m taking Spanish 1 and since I took two years of Spanish in high school it’s been more of a refresher. It feels really good to be able to succeed at something after my bad Spring semester and withdrawing.

Things have been really tough for the last few months. Some days I start to feel like I’m hitting my breaking point. I try not to think about everything too much, but when you spend most of your time alone it’s hard not to think. I’m really trying to stay hopeful that things will improve soon. I hope you all are doing well! What have you been up to lately?

– Alyssa

Finally Having a Diagnosis

After visiting the Mayo Clinic, I finally have a diagnosis for my chronic health issues. I’ve been waiting six years for a diagnosis, but the experience of actually receiving one has been quite different from what I imagined. Maybe this is because I was diagnosed with so many things all at once, which quickly became overwhelming. I’ve definitely learned a lot in the past two months, and have had many things to contemplate.

Receiving a POTS and Dysautonomia diagnosis was in no way surprising. I’ve been asking Doctors to test me for autonomic conditions for two years. After I did the autonomic testing, I received a phone call the following week to tell me the results, which did in fact confirm the diagnosis. I instantly felt relief. There was no more guessing, and no more begging doctors to listen. I also love being right, so I felt quite smug, although this is not the kind of thing you want to be right about. I was relieved to know that I didn’t need to have an ablation or a pacemaker.

Then frustration hit, because dysautonomia is not something that is easy to treat, and there just aren’t many options. I’ve already taken every medication used to treat POTS when they thought I just had inappropriate sinus tachycardia, and they all failed. I’m trying to have hope that a few lifestyle modifications will help, but realistically I know that many people still struggle after making those changes. I made as many changes as possible right away, and so far I’ve only felt worse. I do think (or at least I want to believe) that some of these things will help at least a little bit, but it’s going to take more like six months to see any results.

The gastroparesis and pelvic floor dysfunction are two things I definitely didn’t think I had. I had always associated gastroparesis with a lot of vomiting, and since I rarely vomit I didn’t think it pertained to me. Now that I have the diagnosis I can recognize quite a few of the lesser known symptoms that I have, but never thought much about. I also didn’t realize just how many of my symptoms corresponded with eating until I started paying more attention to them. When your body is constantly doing weird things you don’t always voice all of them. When I do bring up a new symptom to my parents, they always say, “When did that start?” and I’ll be like,” well it started like six months ago…” because if I told them everything that my body does that it shouldn’t do I would never stop talking.

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Leaving school because of all of this has been really hard. My education is so incredibly important to me, and to have to pause it once again has been difficult. I also hate being unproductive, but many days I just don’t have a choice. I am planning to return to school in the Fall, and maybe even take a Summer course online. I don’t know if this is foolish, since I’ve only gotten worse in the past two months, but I need something to look forward to and work hard for.

When I was undiagnosed, I never knew what the future held. That was both terrifying and relieving. It left a tiny glimmer of hope that maybe this would all end one day. Now that I know it won’t, it’s not the easiest thing to cope with. Realistically my life will probably look a lot like it does now forever. I’ll have good days and bad days, I’ll flare and I’ll have months where I’m able to be around 60% functional. I’m still trying to figure out what I should do about my career path, knowing my body cannot handle a job that requires me to do much physically and that I cannot work long hours.  However, there’s always the possibility that things will truly get better, so I don’t want to hold myself back.

I try not to think too much about the possibility of things getting worse, but it’s always kind of hanging around in the back of my mind. Having a diagnosis hasn’t necessarily given me much peace of mind, but I am glad that my treatment options can be tailored towards the cause of my problems instead of just guessing. I’m still working on the whole “positivity” thing. It doesn’t always come naturally to me and I think I just need some more time. Overall, I am grateful for the answers I have received. I have spent too many years begging for any answers, so to have figured out quite a few of my issues has been indescribable. It’s still hard to wrap my head around the fact that we know what’s wrong. For so long I was a “head-scratcher,” a “difficult case,” and a “medical mystery.” I’m still just a girl trying to figure it all out, but at least this girl has some explanation for it all.

Life Update: Withdrawing from College

This semester has been incredibly rough for me.

Some of it I have shared with you, like documenting my journey at the Mayo Clinic, but there’s been a lot going on that I haven’t talked about yet. My health has been very poor since around the last few weeks of Fall Semester, and has been continuously getting worse. This was one of the major reasons I chose to go to Mayo in the middle of Spring semester. Unfortunately I missed a lot of class before my trip, and then a whole week for the trip (my first trip was during spring-break so I didn’t miss any class for that). While I was successful in obtaining multiple diagnoses, the treatment options are very limited.

As of right now, they are mainly focusing on the lifestyle changes; things like exercise, following the gastroparesis diet, and eating tons of salt. These things may or may not work, and if they do work it’s going to be months before I see any improvement. Since returning from my trip, I’ve only become more symptomatic and much less functional. I’m honestly not sure what to do right now, since I know if I contact the Mayo doctors they will probably tell me to just keep trying to do these things since it hasn’t been long enough to see results, but at the same time my body is incredibly weak and doing simple life tasks can be very difficult.

Missing this much school has seriously affected my grades. Some of my professors have been great, and others have been awful. I have disability services, but they aren’t very helpful and professors have found loop holes that essentially disregard any accommodations I’m supposed to have. It’s crazy how little legal protection disabled people have, but that’s a whole nother can of worms. I made the decision to withdraw from college, since my Spring semester grades were going to tank my GPA. I really wanted to only withdraw from the two classes I was doing poorly in, and stay in the two classes that I had nearly perfect grades in, but that isn’t an option at my college.

This also means I will not be able to transfer to a University in the Fall. I won’t have nearly enough hours after I lose these 14. Now, I’m going to have to do at least one more semester at community college, maybe two. I’m trying my best to remind myself that I’m only 18, so I’m actually ahead of my peers by at least one college semester, but withdrawing makes me feel so behind. There’s a lot of emotions to process, and I’m doing my best not to fall into a pit of despair, but it’s been really tough. I think hope and positivity are important when it comes to living as a chronically ill person, but I also think it’s okay to recognize that some situations just suck.

I’m planing to return to college in Fall, or even take a Summer class if I’m able to get my health under control enough. As difficult as this decision is, I know it is the right one. This is not the first time I’ve had to withdraw from school, as many of you know, I started this blog right after I withdrew from high school in November of 2016. It’s crazy to think that almost 18 months later I’m having to do the exact same thing. I’ve got to say it doesn’t hurt any less the second time around, but I know from the first time that it will get better.

Mayo Trip 2: Day 3

Day three at Mayo, I started off by seeing another cardiologist. I wasn’t given a reason for why I was seeing him, and he wasn’t so sure either. Essentially it was unnecessary, and all he said was to stop taking digoxin and gave me a tapering schedule. He asked me if medications have helped my symptoms or if I mainly just push through, I responded by telling him medications have never worked very well for me, so I mainly push through the symptoms as best I can. After praising me for coming to that realization, he gave me a fifteen minute lecture about how so many people are way more disabled than I am, and so I should just push through and not “let my illness define me.” Then he tried to use Stephen Hawking as inspiration porn, which made my blood boil, but I did my best to keep a pleasant face and my mouth shut. I am very happy there is no need to see him again.

I got my results back from the norepinephrine testing and it was normal, so no hyper-POTS for me. They also did a urinalysis to get a base line of my sodium levels, and the autonomic neurologist told me I drink too much water. It’s kind of ironic that I’ve been lectured about drinking lots of water over the years and now I’m being told to decrease my water intake by .5-1 liter. I did drink more than normal that day, because I wanted to make sure the results didn’t make me look dehydrated, and it seems like maybe I went too far. What can I say, I’m an over achiever! 🙂

I saw the fibromyalgia clinic and they were super nice. To be honest I’m a little confused whether I have fibro or not. Apparently I meet all of the 1990 criteria, but it’s questionable if I meet the 2010 criteria. However, she believes when I’m in more of a flare as far as the joint and muscle pain goes that definitely do meet the criteria. Plus I meet the criteria for chronic fatigue syndrome. In her report she wrote “probable fibromyalgia” but the way her nurses report was written it sounded like I had it for sure. Basically I’m supposed to follow suggestions they make for fibro patients, but it’s unclear whether or not she gave me an official diagnosis. I think she did, but it was confusing.

I was supposed to go to a class on fibro today, but it lasted for 8 hours and I’m honestly just so ready to get out of here. I feel like after hearing her recommendations and hearing the autonomic neurologists recommendations that I know what I need to do, and the class may not be all that helpful. Mentally this has been very taxing and at this point in time I think I just need to go home, rest, and assimilate back into daily life. We’re leaving this afternoon, and have no more appointments. I have a lot to process, but I feel very privileged to have been able to go to Mayo and overall I had a very positive experience here. Cross your fingers I don’t have to see the inside of the Rochester airport for quite a while!!

Mayo Clinic Days 3-6

Day three was pretty simple. The only appointment I had was to see the electrophysiologist. Essentially they confirmed what I have believed to be true for the past two years. They think I have dysautonomia and postural orthostatic tachycardia syndrome, and had me do autonomic testing to confirm the diagnosis. I do not yet have those results, but from the numbers I saw during the test, I think it’s going to be confirmed. Since this is an autonomic issue, they’ve referred me to an autonomic neurologist. Unfortunately we couldn’t get into see her this week, so we will be returning to Mayo later next week. They reiterated to me how difficult it is to treat dysautonomia, and how since I’ve failed every medication used to treat POTS already, there isn’t much they can do. It’s incredibly discouraging, but not surprising. My electrophysiologist here in Texas wanted me to have a complete ablation of the sinus node, but given the statistics they quoted me, it definitely isn’t on the table right now, since it has a greater possibility of making me worse or doing nothing at all than helping.

On Thursday, I began my GI transit test, which is basically a gastric emptying scan only they look at the whole GI tract. I had to eat a breakfast of two eggs, a pice of toast, and a glass of milk in ten minutes, which made me really sick. Then for lunch I had to eat a sandwich made with butter, mayonnaise, 5 ounces of turkey lunch meat, with a whole bottle of water and a container of jello all in 30 minutes. I ate as much as I could, but I had to stop when I started violently retching, because throwing up could have altered the scan. Friday morning I had more x-rays to do for the scan, and then I had my autonomic testing done.

Friday afternoon, I had my follow up with the gastroenterologist, and frankly its been hard to digest (no pun intended) the news he gave me. Essentially I have gastroparesis and pelvic floor dysfunction, neither of which was I expecting, let alone two separate GI diagnoses. Gastroparesis is also something that is not easy to fix, and knowing how severe it can get for some people really scares me. At this point mine has progressed to moderate (out of mild, moderate, severe) and they’ve recommended I eat mainly pureed and soft foods. Following a gastroparesis diet is going to be a complete 180 for me, since the main things I eat are fruits, vegetables, and brown rice and I’m no longer supposed to eat any of those. As for the pelvic floor dysfunction, I’m not emotionally ready to try and treat that yet. It involves very invasive physical therapy, that I do not feel is necessary, and I definitely want a second opinion about before I do something so drastic.

The cardiologist thinks I also have fibromyalgia, and the GI suspects endometriosis. When I go back next week I’m seeing a gynecologist for the first time, and also the fibromyalgia clinic, as well as a dietitian to learn more about how I should change my diet. This has all been incredibly overwhelming, but I finally have some answers after six hard years of looking. I’m going to try and go back to school on Monday, but I honestly can’t even imagine going right now. I feel as if I’ve been living in an alternate universe, and being thrown back into daily life feels so odd. Even though I was only gone for one week, I feel like I’ve been gone for a solid month, but as I’m writing this I’m curled up in my own bed with my cat, and some level of normalcy feels restored. I apologize for being MIA, and a lot less active on here for the past two months, I hope you can see a lot has been going on in my life! I will continue to keep y’all updated through my Mayo Clinic experience when I travel back next week.