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?

 

 

Getting Back into Things

For the past 3 1/2 weeks i’ve been going to the gym.

I gained a ton of weight on Gabapentin, like a lot. It’s hard to gauge exactly how much it is since before the rapid weight gain, I had rapid weight loss. Pre-chronic illness I weighted between 120-125 lbs, then I gained weight from meds and went up to 138 lbs, then I lost weight because of Cymbalta and Topiramate, down to 112 lbs, and finally I gained on the Gabapentin and Amitriptyline weight all the way up to 170 lbs. If you count the weight gain from when I lost a lot of weight then i’ve gained nearly 60 pounds, if you count it from before chronic illness it’s 45-50 lbs. Either way it’s a lot and needs to change.

For reference i’m 4’11 and 3/4 so being 170 pounds makes me over weight. I can deal with the weight gain, because I know I can lose it, but the stretch marks are distressing. I don’t have the silvery-white stretch marks that are barely noticeable. Since mine are “new” they’re bright red and everywhere. They’re the worst on my arms, but they cover my thighs, have crept onto my calves, cover the side of my stomach, and have popped up on the front of my stomach. I feel like a hypocrite because i believe everyone is beautiful and shouldn’t love themselves no matter what, but I honestly hate the way my body looks right now.

Right now I’m on an upswing with my health. I’m out of a flare and feeling pretty well. The biggest thing to celebrate is that I’m actually sleeping, so I don’t feel like a zombie all day. There’s no way I could go to the gym 5-6 days a week if I was still feeling so poorly, so for now I’m getting in all the exercise I can. I’m definitely not someone who loves going to the gym, it’s kinda boring and I don’t like working out around other people. Once you start to go regularly though you start to notice things.

For one, everyone is in their own bubble and doesn’t care what you’re doing. Also you’re probably not going to be the most out of shape person there. Sometimes super thin girls will get on an elliptical next to be and look half dead ten minutes in and by fifteen minutes they’re done. This is just one of a million reasons why weight doesn’t always correspond with health.

So far I’ve lost 4 pounds, which isn’t much but it’s better than nothing. I’ve been out of town for part of the time so I couldn’t go the gym, but for the most part i’ve been sticking to it. To me working out isn’t the hardest part, it’s eating healthy. When you feel terrible you don’t want to make something to eat. It’s easy to grab whatever’s available and takes no preparation. The problem with that is the things that take no prep are often processed foods, with little nutritional value.

Finding a diet that’s sustainable has been difficult. I really don’t want to put a ton of work into this now for it all to come back in a year or two. I’ve watched everyone in my family yo-yo with their weight so I know this isn’t going to be easy. I’m also currently taking another medication that can cause rapid weight gain, so I’m hoping I can go off of it soon since it doesn’t seem to be helping the tachycardia issue.

I’m counting on this getting easier the longer I do it. If you’ve lost weight/ started trying to live a healthier lifestyle, how did you stay motivated?

Lots of Love,

Alyssa

 

 

Getting My GED

I finally bit the bullet and took all four of my GED tests!

I had studied off and on since January, but I knew I was stalling and needed to go ahead and get it done. Honestly I was just really afraid of failing.  When I was studying it wasn’t that hard, but I thought it would be really embarrassing to fail a test that’s supposed to be easy.

I took the social studies portion on May 2nd and passed with flying colors. Then I took the math test and the science test on May 9th, which were the ones I was most nervous about. Luckily I also did really well and overall it wasn’t very hard. Finally I took the English test yesterday. I’ve always done well in English and aced all of my state mandated English tests, so I wasn’t worried about this one at all. I could have done them all in one day, but with my chronic illnesses I didn’t think that would be a good idea. They allow you so much time to test, and I wasn’t sure how much I would actually take so splitting them up seemed like the best choice. I passed them all as college ready which was really exciting, and I was one point away from getting college credit on the science portion. 

I’m so so happy to be done with the high school portion of my life! I honestly can’t express enough how much this is a huge weight lifted off my shoulders. I’m done with high school… early. Yes a GED isn’t as good as an actual high school diploma, but back in the fall I wasn’t so sure I was going to be able to even get this done before the Summer began. Now all I need is my license and I can start taking college classes at my local community college in the fall! The situation may not be ideal, but I’m choosing to celebrate the win and look forward to getting my life back on track.

Lots of Love,

Alyssa

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

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

Cardiac Electrophysiologist Update

Yesterday was my Electrophysiologist visit and it went quite well.

We waited for a bit, but once we got into a room the doctor was really quick. He had already reviewed the stress test, EKG, and echo from the cardiologist and had an action plan, which was refreshing. His plan was not one I expected though.

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The doctor said he could do another Hilter monitor but this time for 3-4 weeks, but didn’t think the information would be anymore helpful than the previous 24 hour one was. Instead he suggested an electrophysiology test. This is a procedure where they go through a vein in your inner-hip/groin area and go into your heart with a catheter. If there are any extra chambers, which is what they’re looking for, then they would a cardiac ablation.They also stimulate the heart to see how it responds. He isn’t expecting to see extra chambers, and thinks the final diagnosis is going to be Inappropriate Sinus Tachycardia. The doctor said “Inappropriate sinus tachycardia is frustrating, because it happens for no reason and you have to rule out other things to properly diagnose it.” Great, another annoying medical condition that doesn’t seem to really have a reason, I might as well collect them now.

Whatever it is, it’s going to be nice to get a definitive diagnosis about something. He said the scheduler should call before Monday afternoon, and the procedure will probably be done in the next 3-4 weeks. That’s really fast, and I’m surprised he thinks he’s going to be able to do it so soon. You normally have to wait 3-4 weeks at least to get a specialist appointment, let alone schedule a procedure.

Oddly I’m not nervous at all, which kinda weirds me out. Lately I’ve felt like everything that’s been happening isn’t actually happening to me. Like I’m watching a movie and someone else is going through all of this; it’s been weird. Even when I look in the mirror I don’t see myself, and I don’t mean that metaphorically. I’m almost surprised at my reflection every time, and I don’t think it’s just the sudden weight gain. When I look at pictures from a year ago when I was really thin, and had my long golden hair, (before I cut it all off and dyed it), I also don’t see me. I’m not really sure what I look like, and for someone who doesn’t have vision problems, I feel like thats an odd thing to say. Maybe I’ll get nervous when it’s planned or a few days before the procedure, but for now I feel kinda numb about it.

I’m happy we’re doing something about the tachycardia, because I honestly waited way too long to go see a cardiologist. The chronic pain had always been the most important thing in my eyes, so I put this on the back-burner. I’ve brought it up to plenty of doctors, but they’ve all shrugged it off and just said “that’s weird.”

So, here’s my update since for once there’s actually something to report instead of just medication changes. I hope you’re all doing well, and are feeling okay. I’d love to hear about what’s going on in your life!

Lots of Love,

Alyssa

Update: The EPT is scheduled for 3/2/17. Longer than he said, but not too bad!

Acupuncture & GP Visit

On Tuesday I had my first acupuncture appointment. It was an interesting experience to say the least. The acupuncturist was the cutest old lady, and she was very sweet. She truly believes in the power of acupuncture which makes me (a skeptic) feel better.

I had needles put in my face, arms, and legs, and none of them hurt. Then she attached wires and sent an electrical current through four of them. I sat for 45 minutes while the needles were in, and a tape called “Six Bridges” played. I didn’t love the tape, it was basically a breathing exercise. I think meditation can be a good thing, but I’m not so sure it’s for me. When the acupuncture was done, she did fire cupping and then acupressure.

That night I had a migraine, felt super dizzy, and nauseous. I don’t think the acupuncture caused it, but it didn’t seem to work. Acupuncture is a process though, so I’m going to continue to try it for a little while, and if it doesn’t work, at least I tried.

Yesterday I saw my GP who I love, and we talked about whats been going on the past few months. She ordered some blood tests, which I have to get done later this week. I went right after my appointment to the lab across the street to get them done, but they stuck me four times, and didn’t get anything. They blamed it on me being dehydrated (not surprising) but I had drank a bottle of water before I went in there, and I don’t think I was dehydrated. I’m a really hard stick, and I understand that, but it isn’t impossible.

Hopefully these labs show something, although they never do, but I’m trying to stay hopeful. I’m continuously gaining weight even though I’ve been more active and have tried to change my eating habits. The weight gain has been SO rapid, there has to be something wrong. But, I guess we’ll see.

What’s going on in your life? I’d love to hear about it!

Lots of Love,

Alyssa