It’s Been a Minute: Life Update

It’s been a little while since I talked about what’s going on in my life, so I thought I would catch you all up!

First, I got the results back from my endoscopy and they were inconclusive. I had elevated mast cells in my biopsies, but they weren’t nearly high enough to diagnose mastocytosis. I had a serum tryptase test done to see if I had any elevated levels there, and it came back normal. It looks like I probably don’t have systemic mastocytosis, but my gastroenterologist is referring me to a new allergist/immunologist, who I have an appointment with on the 16th. Having negative results for tests is a good thing, because you don’t want anything to be wrong with your body, but it is also incredibly discouraging when it was the only new idea a doctor had in a long time. Since, I looks like I don’t have any mast cell issues, the gastroenterologist diagnosed me with post-infectious IBS.

I continued to have trouble with exhaustion due to my IST, so the electrophysiologist upped by digoxin dose. It had been working really well, but the past couple of days I’ve been exhausted and have felt my heart racing. It’s hard to know if the medication is no longer working or if I’m just having a rough few days.  I have an appointment on the 22nd with him, so we’ll see what he says. The gastroenterologist put me on Linzess for my IBS, and it hasn’t worked. It’s supposed to help with chronic constipation, but instead it’s making me have no bowel movement for two to three days, and then diarrhea. I stopped taking it, and became incredibly constipated immediately. Luckily, I see him on the 8th so hopefully he has some ideas on how we can get my digestion under control.

With school starting back on the 16th, and three doctors appointments in January, this is going to be a pretty busy month for me. I’m also starting to volunteer at a nursing home this Friday, which I am excited about. I feel ready to go back to school, mainly because I’ve been bored. I really hate feeling unproductive, but having the time to relax is nice, and something I try to take advantage of. I hope you all are doing well, and enjoying the new year so far!

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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!

 

Corlanor and Other Frustrations

Last week was the roughest week I’ve had in a while. My migraines have returned, my stomach has continued to be a hot mess, and my heart is becoming a major problem again. What a great mix!

I saw a new electrophysiologist on Friday, and he confirmed my diagnosis of Inappropriate Sinus Tachycardia. I was diagnosed with IST back in February after an electrophysiological study, but due to a terrible experience with that doctor I hadn’t done much about it since then. I’ve tried metoprolol, verapamil, and propanolol to slow my heart rate, but all of them failed to do so and caused side effects. Although I actually really liked this new electrophysiologist, he made big promises; promises he should have never made.

He started me on Corlanor, and told me verbatim this would be a miracle drug. As a skeptic with an asshole for a body I didn’t really believe him, but I was hopeful. I hadn’t done much research on IST, surprisingly since I love to research things, but now I have a million questions, most of which probably don’t have answers. Here are my questions, so if for some reason you have answers or have IST I’d love to hear them!

  1. Is IST a form of Dysautonomia?  The internet is giving me mixed signals
  2. What are other treatment options if beat-blockers, calcium blockers, and corlanor don’t work?
  3. How could this affect my laundry list of symptoms that no one seems to have an answer for?

Unfortunately my body is not liking the corlanor at all. My pulse is all over the place, sometimes “normal” around 75, and other times I’m still very much tachycardic at 120. It has also caused me to become extremely fatigued, hypotensive, and dizzy. Pretty much all day Saturday and Sunday I couldn’t do anything because I was so out of it. I started to get super disoriented (which does happen to me sometimes without medication) and couldn’t formulate sentences or comprehend anything I was trying to read. I’m on the lowest dose of this medication so I don’t think we can make this work.

I decided to stop taking it Sunday night, because I have a busy school week this week and I definitely won’t be able to go to school with all these side effects; It’s also not safe for me to drive when I’m so out of it. As far as I’m aware this is the last option I have to treat the IST, which is incredibly frustrating. I can feel my body progressively getting worse and returning to a dysfunctional state, which really scares me.

So far in the six weeks I’ve been in school I’ve only missed one class and it was for the electrophysiology appointment. I’ve been pushing myself incredibly hard and studying a ton, but if my health gets worse I’m afraid I’ll go back to missing school all the time. I just really don’t want to lose the progress I’ve made or have to leave school again. Maybe I’m thinking about this too much, but it’s really hard not to. We’re going to call the doctor today and see what he says about the side effects; I’m supposed to have a follow up on November 3rd, but it looks like I may need to see him sooner. I also have a gastroenterology appointment on October 18th with a new doctor, so hopefully that will bring some answers for my GI problems.

As for the migraines and daily headaches, I’m not sure I’m ready to go back down that road again. I’m feeling really emotional right now and the lack of control I feel over the situation is getting to me. I know that I can handle this because I’ve done it so many times, but honestly I just really don’t want to feel like like crap all the time and not be able to function. All I can try and do is hope that the electrophysiologist will have some ideas and the gastro appointment will go well.

I hope you all have a good week!

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

What’s Next for my Health?

This is the question always in my mind:

What’s next for my health?

Lately I’ve been doing really well. For the last three months I’ve felt better than I have in at least a year. This is great news, and something to celebrate, but my health has a specific pattern it likes to follow. Summer/early fall I do well, sometimes I’m doing great within this time, other times I’m doing just okay, but I’m able to function much more than when it’s bad. Early/Mid Fall things decline and by the time winter arrives things are really really bad.

I’m scared of the months to come. I’ve signed up for college classes, and I desperately want to do well in them and not be absent all the time. It’s not the pain I’m afraid of anymore, it’s what it takes away. I want to move on with my education and my life in general. I want to make friends and have an active social life. I just want to live a more normal life.

Last week I went to see the rheumatologist I saw back in April. She’s very kind, but she doesn’t think whatever’s going on with me is rheumatological, and doesn’t think there’s much she can do. I’m incredibly tired of having this conversation with doctor after doctor. I don’t seem to fall under anyones specialty, and no one wants to help. The rare few doctors who do want to help, like her and my GP, don’t know what else to do. Part of me doesn’t think anyone is ever going to be able to figure it out.

I’m trying really hard to “live in the moment,” and enjoy the time I have while I’m feeling well. It’s incredibly hard to do that though, when you know what’s to come. Honestly I would much rather feel terrible now and then feel better in the fall when classes start, but that would be too easy. Don’t get me wrong, I’m incredibly grateful to have been feeling well these past three months, I know many people with chronic illnesses don’t get a few good days let alone months.

My rheumatologist and GP spoke and decided I should do some genetic testing. We’re doing it through 23&Me which makes me a little skeptical of its accuracy, but it won’t hurt to see of it gives us any decent information. I sent it off a few days ago, but it takes up to a month to process. Even if we don’t get nay good medical information, it will at least be interesting to see where I came from. Being white, I know it isn’t going to be every exciting, but it will still be interesting.

What’s going on in your life?

Have you/are you doing any new testing or starting a new treatment plan?

 

Lots of Love,

Alyssa

Life Update: June

I feel like it’s been a while since I updated ya’ll on my personal life!

Overall things are going pretty well. Health wise I was feeling really good for a while, but now I’m just feeling okay. I’m having more headaches than I was, and my stomach is acting up, but overall I’m still doing better than normal. I had an appointment with an endocrinologist which was a waste of time, but other than that I haven’t seen any other doctors. I’m probably going to find a new gastroenterologist since that seems to be my main problem currently, and the one I was seeing said he couldn’t do anything more for me back in the fall of 2016. Ultimately I probably need to go to Mayo Clinic, but we haven’t started to try and apply since I’ve been out of a flare for a while. Having a few good months during spring/summer isn’t abnormal for me though, and it usually ends with intense pain and a hospitalization in the Fall. Yipee!

I got my GED in May and this past week I was admitted to my local community college. Yesterday I took the TSI, and luckily I don’t have to do any remedial courses, so that’s nice. I also visited with an academic advisor and started the process of getting disability services. Things are looking up as far as that goes!

The one major thing I need to do now is get my driver’s license. I have an appointment for June 28th, and I’m terrified. I took the driving test once and it didn’t go well. The woman who administered the test and angry when she got in my car and snapped at me repeatedly, then she failed me. Honestly I know I made some mistakes and shouldn’t have gotten a perfect score, but failing seemed a little ridiculous. That was almost a year and a half ago so it’s time to try again. She really got in my head and made me scared to drive, but I’m trying to be positive and confident because I know I can do it.

It may sound silly to some people who have gone through the process of getting a license, but it’s been incredibly stressful for me. I’m comfortable with driving now, the only problem is the dreaded parallel parking. Ironically that’s the part I passed the first time. I know some states don’t do the parallel parking, but my parents told me moving across the country wasn’t an option, so I guess for now I’ll just keep practicing. There’s a lot riding on this since I can’t to go college if I can’t drive, but I have faith that I’ll pass (or at least I’m trying to pretend I do :)).

I helped my sister move out of her college apartment, look for a new apartment by her new job, and then into her new apartment. She had her graduation ceremony mid-May and we threw her a family party at the air-bnb we rented. It was really nice, but I’m sad that she’s now living four hours away from us, and won’t be forced to see us for a month over Holiday break. She’s very family oriented so I know she’ll visit and we’ll visit her, but I also know it won’t be as often as it used to be.

That’s pretty much it as far as my life’s concerned. How are you doing? Do you have any fun Summer plans?

 

 

All the Appointments!

Since I last did a health update a lot of things have happened.

First I went to an allergist/immunologist who I really liked and she ran the Tryptase test for MCAD. Unfortunately that came back fine, and so did all the other tests she ran. She started me on Singulair, ranitidine, and Allegra for the all over itching I’m having. They’ve kind of worked, but the days I still have the itching it’s extreme and I feel like I want to peel back a layer of my skin.

I also went back to see my electrophysiologist for a follow-up from my EP study. It wasn’t surprising to me that this visit was kind of a waste, but it was still annoying. He upped my metoprolol dose to now 25mg 2x a day from 12.5mg 2x a day. Due to some unexplained episodes of waking up gasping, my heart skipping a beat, then beating really hard and pain shooting through my body I’m wearing a monitor for a week. I’ve done the 24 hour Holter monitor before but this is the Cardiokey. Hopefully it gives us some answers. He doesn’t think they are anything to worry about, but he also doesn’t do much diagnostic testing and in my opinion generally does not care. Unfortunately I have to see him in May to get the results from the monitor.

My mom works as a case manager in a hospital and one of her friends is a Cardiologist. She explained my whole cardio story to her and she thinks I should get a second opinion and that my electrophysiologist isn’t doing enough. So now we’re looking for one who will take seventeen year olds.

Because I definitely needed more specialists in my life, I saw a rheumatologist for the first time. I’ve been having joint pain and swelling that didn’t go away after I weaned off topiramate, so we went to see what they could do and what suggestions they had. My mom had to call 12 different rheumatologist to find one who would take me. Most of them didn’t see anyone under 18, so she called pediatric places but they wouldn’t see new patients over 16, being 17 I was screwed. Fortunately she explained my situation to one office and the secretary asked the doctor if she would make an exception and see someone under eighteen and she agreed, God bless nice people. This doctor was so kind and understanding.  She ran something like 21 blood tests to make sure I didn’t have any signs of rheumatology related diseases like Lupus or RA. I also got x-rays of my hands and feet, and we should get results from all of this within 1-2 weeks.

She thinks I may have fibromyalgia on top of whatever mystery illness I’m fighting, but doesn’t want to diagnose me with it just yet since it’s something that is way over diagnosed and once you get that diagnosis most doctors won’t look past it. I’m not surprised she thinks I could have fibromyalgia, but I am really happy she wants to do more and look into other things.

In two weeks I have a follow up with the allergist, then in eight weeks I have a follow up with the rheumatologist, and in seven weeks is the follow up with the electrophysiologist. Ahh so many! Some of these would be sooner but our insurance is changing as of May 1st so for the first 15 days while things are switching over it’s best not to have any appointments. I also have a dentist appointment to fix some broken fillings in May. It’s gonna be busy, but I’m glad we’re getting the diagnosis process going again.

If you read this whole thing, thank you but also why? Haha I’m kidding, but seriously thank you for taking the time to read my posts. Let me know how you’re doing!

Lots of Love

and appointments,

Alyssa