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

The Guilt of Chronic Illness

We shouldn’t feel guilt of things that are out of our control, but I don’t know anyone who’s dealt with a chronic illness that doesn’t ever feel guilty.

I mostly feel guilty that my parents spend so much time taking me to doctor, especially my mom, and that they have spent so much money on medical treatments. They never try to purposefully make me feel bad, but I know this is hard for them too. They didn’t ask for this anymore than I did.

For almost all of my doctors appointments my mom’s been there. It’s not that my Dad doesn’t care, his work just isn’t nearly as flexible. She’s spent countless hours in doctor’s offices, ER’s, and hospital rooms. She’s advocated endlessly for me, even when she was tired or not feeling well herself. I am so grateful for her, but I also feel terrible that she’s sacrificed so much for me.

The money is a different issue. We’ve always been very fortunate to be middle class. During the five years I’ve been chronically ill my dad was laid off and then unemployed for a little over a year. Luckily he got a pretty good severance deal from his previous employer but it was still really hard on our family financially and emotionally. My illness did not stop just because he lost his job, and paying tens of thousands of dollars in medical bills took a blow to our finances. While we’ve also been very fortunate to have always had medial insurance, the cost of doctors office visits, medications,  and diagnostic testing really adds up. Knowing that even if I have a job that pays really well in the future, I will never be able to repay them is a hard pill to swallow. I see that every time they check the mail there’s another medical bill that’s usually for me, and it makes me feel incredibly guilty.

Another thing that makes me feel guilty is seeing my parents get upset when I’m not feeling well. Sometimes I try lying and say I’m feeling okay, but they can usually see right through me; I’m not a very good liar. At times I forget that this is really hard for them emotionally as well. They are nearly as frustrated as me that I don’t have a diagnosis or an accurate treatment plan. Their heart breaks along with mine when we hear another doctor tell us they don’t know what’s going on or another medication doesn’t work. I wish I could take all of their pain away, and knowing I can’t is the  hardest part.

I know that feeling guilty won’t fix the situation or make it any better, but seeing your issues affecting someone else is difficult. I hope that if you feel guilty about being chronically ill that you can see that it isn’t your fault. Chronic illness is a beast that no one causes.

– 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

Lent and Sacrifices

Ash Wednesday marks the beginning of the Lenten season. For those who don’t practice Christianity and aren’t aware Lent is the period of forty days before Eater that we “give something up” in order to bring ourselves closer to God.

I have participated in lent many years although it can often be difficult to decide what to give up. A lot of people seem to confuse giving something up, like drinking soda because it isn’t good for your health, as something that  you should refrain from during Lent. While you can give up whatever you choose the ultimate goal of lent is to grow closer with God, not stop a bad habit. If you can replace that bad habit with reading the Bible or prayer then it makes sense to pick the particular habit.

I have made this mistake many times. Giving something up just to give something up completely ignores the meaning of Lent. That doesn’t discredit the motive behind doing it. It’s always good to do things to better your life or get healthier it just isn’t going to change your relationship with God unless you replace it with spending time with him. I’ve given up things like TV or a certain food, but didn’t spend any more time with God than I normally did in the past. That’s why this year I’m giving up negativity.

“Finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things.” Philippians 4:8

I’m can be a pessimist and chronic illness only makes it worse. I want to try to be more positive and put more of my hope in God. My goal is to replace my negativity with prayer and scripture. This isn’t an easy thing to do, but my relationship with God is important to me and I think it will good for my mental health. This will be the first time I’ve really done Lent “the right way,” and tried to strengthen my relationship with God through sacrifice. It isn’t going to be easy and I’m not sure that I can be positive for forty days, but I’m going to work on it.

I’m going to allow myself to be unhappy or upset because that’s just a normal part of being human. What I don’t want to do is wallow in negativity and look at the world pessimistically. Not everything is bad or going to hurt me. I want to try to see the joy in little things and feel happiness on a daily basis, even if it’s for short periods of time.

When I see people who have so much joy and love God so much, I yearn to be like them. Don’t get me wrong I love God and always will, I just don’t feel this sense of joy that other people have. While reading the Bible and praying isn’t going to fix all my problems and make my life perfect I know it always makes me feel more at peace and joyful.

Are you celebrating Lent this season? I’m not Catholic and any Baptist church I’ve ever been to hasn’t done an Ash Wednesday service so I’ve never been to one. Did you go to one, and if so how was it? Let me know what you’ve decided to refrain from during Lent.

Lots of Love,

Alyssa

Liar Sprite: Chronically Misunderstood

For some reason anesthesia makes me a bit agitated and generally put out with anyone and everything. This specific incident took place after my second colonoscopy/endoscopy and for some reason I decided that filters weren’t needed and I definitely wasn’t gonna use mine.

When I first came to consciousness there was part of a popsicle in my mouth and I was very confused. Apparently I had said I wanted it, but I don’t remember any of that. My dad was holding the stick and the first thing I said was “What are you doing? Why would you do that?” in an accusatory tone. It’s a good thing I have nice parents who just smiled and then jokingly made fun of me later. They’ve put up with a lot from post-procedure Alyssa, and she isn’t always very nice.

Later the nurse asked me if I wanted any Sprite to take some medication with and in a fog I said yes. She came back with Shasta Twist which was completely unacceptable to drugged up me. I turned to my parents and said, “oh so all they have is lair Sprite? I don’t want this liar Sprite.” Apparently anesthesia also makes me high maintenance. I was deeply offended that someone would try to pass off brand soda onto me like it was the real deal.

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The clean out for a colonoscopy is enough to make anyone on edge, but add medication and an already sarcastic attitude and well the outcome isn’t always very pretty. I think it’s really funny that I said those things because I never act like that, and I can’t believe that off-brand soda offended me. Who knew I was such a brat when it came to Sprite?

Lots of Love,

and Sprite 😉

Alyssa