Revisiting My 2018 Goals

At the end of 2017, I made a post about what my goals were for 2018. During the entirety of 2018, I never went back and read them until now. To be quite honest I had forgotten what most of them actually were, which made revisiting them kind of fun.

My first goal was to keep my grades up, or more specifically, maintain my GPA in the spring semester of 2018. Now I’m not sure whether to say I met this goal or not. On one hand, I actually ended up having to drop out of spring semester due to illness, so I didn’t receive any credits for the work I did at all. However, I did maintain my GPA for the fall semester when I went back to college. Technically I did keep my grades up, just not in the spring semester. I’m gonna call it a win, even though it is on a technicality. 🙂

My second goal was to transfer to a university and I did that! I didn’t end up at the school I thought I would go to in that post, but I did in fact transfer to a new school.

The third goal I had was to get my pharmacy technician license. I did not do this, and it is also no longer a goal of mine. I changed my major and getting a pharmacy tech license isn’t as relevant to my future as it once was.

My fourth goal was to be more involved in my community.  This year I did a few new things to be more involved like participating in the March for our Lives, and voting in my first election. My community also changed some, as I moved forty-five minutes away to go to university. I joined a few clubs/organizations at my university, one of which is a volunteer organization where we do blood pressure screenings for people dealing with homelessness and poverty.

The last goal I made was to continue blogging, and I think this post is proof that I did in fact do that. I would like to blog more in 2019. This year was so crazy for me that my blogging slowed down towards the end of the year, but I would like to post more often in the future.

What goals did you have for 2018? Were you able to accomplish them? Let me know in the comments! I’d also love to hear that your goals are for 2019. Look for a post of my 2019 goals coming soon!

 

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Turning 19, Finishing my First Semester at a University, and More Life Changes

Ya’ll! It has been far too long since I’ve properly sat down updated / spent time on this blog in general. Finals are over (hallelujah) and it’s officially winter break. I’m going to try to rapid fire catch ya’ll up on everything.

Back on November 17th, I turned 19! It feels really weird to say I’m nineteen, as it sounds both far too old and too young at the same time. My birthday was on a Saturday, so I went home for the weekend and celebrated with my family. My older sister couldn’t come that weekend, so she came the weekend before to my apartment and we had a lot of fun hanging out. She lives four hours away from me, so I don’t get to see her as much as I’d like. We went to a queer coffee shop in the city my university is in and played Drag Queen Bingo, which was really fun!

School has been a whirlwind. I can’t believe this semester is already over. As a whole, I had a pretty good semester. I took Biology II with lab, chemistry I with lab, and Spanish II, which totaled to 13 hours.  Chemistry was HARD! Since I didn’t really go to high school, I practically didn’t take chemistry, so everything was new to me. However, even all the other students who had taken chemistry previously also struggled; I guess it’s considered a “weed out” class for a reason. I managed to pull out an A, but there were definitely times that it felt like I was holding onto that A by a thread. I’ve never studied so much in my life for one class, but I feel very proud that I was able to do it. I’m very pleased I was able to keep my 4.0 this semester!

After many conversations and months of internal conflict with my college major choice, I’ve decided to change my major to nursing. I think the nursing approach better envelops my ultimate goal of taking care of chronically ill patients and being their advocate, than the general approach of being a doctor does. I do however still want to be in a provider role, and plan on getting my masters to become a nurse practitioner later down the road. It took me a long time to get to this conclusion, but I’m really excited about it. Realistically I knew Med School would never work out anyway with my health issues, but I didn’t feel peace about letting go of that dream until recently. The only downside is that my university does not have a nursing program, so I have two options: 1. finish my prerequisites at my current school and then apply directly to nursing school for Fall 2020, 2. transfer next fall to a school that has a nursing program to finish my pre-reqs there and then go to that universities nursing school afterwards. I am planning on re-applying to my dream school because they have the best nursing program in the state, and if I don’t get in then I’ll just finish up at my current school.

I’m a little bit sad about the possibility of me leaving my current university. Although this semester has been tough, I do really like the school. On the other hand, the school I’m applying to has been my dream school for so long and it’s in the city I’ve always wanted to live in. I have not made the friends I was hoping to this semester, so the idea of starting all over again is both intriguing and terrifying. I’m really hoping I make some friends next semester, as I’ve been incredibly lonely.

Overall I am really grateful for this semester, and everything it has taught me. Thank you for sticking with me, even with the lack of posts these last few months. I’m hoping to be able to post more in 2019. How has your life been? If you are in school, how did your semester go?

I hope you all have / have had a very happy holiday season!

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!

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.