First Day of College

Yesterday was my first day of my first  college class.

Even though I’ve taken all the steps to get here, it doesn’t feel real at all. I’m seventeen and going to college, and it feels weird.

Not a whole lot is going to change. It’s community college, so the work shouldn’t be that difficult, and I’m still living at home. I left high school back in November of 2016, so its been a while since I’ve been to school. The only fear I really have is getting really sick again and having to leave, other than that I’m not too nervous. It’s been five and half years since I’ve been able to go to school full time. That means I was twelve last time I went to school consistently, so it’s been quite a long time.

 

The first day of class went pretty smoothly. I’m taking Art appreciation, since I need an art credit. We aren’t using a textbook and we won’t have a final exam, which was pretty surprising to me. I had to go to Micheal’s after class though and get a bunch of painting supplies because, as a surprise to me, we’re painting. I thought we would be appreciating art, not creating it. I have lots of good artistic ideas (well, good ideas to me at least) but actually executing them well isn’t my thing. I’m sure he won’t grade too hard on how it looks since this is a beginners class though.

Today I have a meeting to finalize setting up disability services with my college. I’m pretty proud of myself for doing everything I needed to do to set this up, and applying for college in general all by myself. The only thing my parents did is fax papers to the college from their  work, since we don’t have a fax machine at home. This will be the first time I’l have to advocate for my health all by myself, which gives me some anxiety. I usually do most of the talking, but my mom’s usually there to fill in the areas I’ve forgotten. Gotta love brain fog!

Things feel like they’re going in a good direction for once. I just hope it stays that way.

What’s new with you? Do you have any Summer plans?

Lots of Love,

Alyssa

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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?

 

 

17 Going on 67

I haven’t been feeling great for the past two weeks or so.

I don’t think I’m in full flare mode yet, but my body just feels bad. I’m not having migraines, but I am having daily headaches and gastro issues. My tachycardia has been affecting me more than usual and making me really tired. I just feel old.

My joints hurt, and everything is exhausting. Weird things keep happening that aren’t a big deal, I just don’t normally experience them. My muscles have been twitching, my joint crack ridiculously loud every time I move, and a few times in the past week I’ve started shaking randomly. These things probably won’t last long, because my body is an asshole who likes to mess with me, but they’re annoying none the less. It’s been hard to explain, but something feels off. I’m not in a ton of pain, but I feel terrible and that’s not really something you can fix.

I went to my first appointment at a new counselor since the last one kept canceling on us. It was an “intake” appointment and she just asked me a bunch of questions. I feel like all I’m doing is complaining, but to be honest I didn’t really like her. She asked me a few questions in the beginning and my brain went blank. I couldn’t think, my heart starting racing even faster than normal, my whole body flushed, and I felt lightheaded. I was embarrassed and said, “I’m sorry my brains a little foggy today,” and she just gave me a look like I was crazy and said “oooooh kayyyy.” It felt really judgmental even if she didn’t mean it that way. She also said somethings that rubbed me the wrong way and tried to give me medical advice, which is so very annoying. I’m still going to try to have one real appointment with her and give her a chance, because there isn’t anyone in my area who wants to see a seventeen year old with chronic health issues.

I’m really hoping they’ll find something in my electrophysiology study next week, because this fatigue is awful. I’m normally pretty fatigued, but this a whole other ball game. I am grateful that I’ve only had a few episodes of extreme pain, but I’m fearful for the weeks to come. This time of year is normally really bad for me, so it’s been kind of weird that I’ve had less pain than normal. I’m trying my best to stay positive, although this post wasn’t very positive was it? Sometimes we all just need to rant.  I have a hard time finding a balance between my realist personality, inner cynic, and the positive person I know I should be trying to be.

How are you doing? Let me know what’s knew in your life or what’s been going on!

Lots of Love,

Alyssa