Diary of A Sick Kid

Life Update:

1. I am so bad at keeping up with this blog. 

2. I have been cleared for MS!

3. They are now looking into Wilson’s disease due to high copper levels.

4. My Headache: It has been getting steadily worse. I don’t like it. I recently had Occipital Nerve Blocks done and they provided me with little relief and horrible neck pain. However, this is not the norm. 

5. If I dont get better by summer/dont learn how to pretend to be healthy, I get to spend my summer in an inpatient hospital looking for a diagnosis. I’m sorry, it may work for some people, but I would probably go nuts. 

6. What I WILL be doing this summer instead of being hospitalized: Getting a damn job. Working and working and working. Attending the National Student Leadership Conference for Medicine. And visiting old friends. 

Plus one dull week in Oregon.

Yay.

How have all my delightful followers been?

I hope your spoons are plentiful!

Sjogrens

illsharemyspoonswithyou:

When I saw this image I almost cried. Not out of sadness, but because I finally have answers. Do you see the line pointing to the stomach? It says gastroparesis. Finally, I have a reason! I have understanding!! And every other symptom on there… just confirmation my fight is real and I’m not simply “stressed”. 

Keep fighting spoonies. We’re true warriors! 

Semester Lesson: Self-Care and Following Your Dreams

omnomnomdiagnosis:

I think the hardest things I’m going to need to learn this semester are not giving up on my dreams and learning how and when to take a time out and fix myself.

Self-care can be difficult in college, especially with professors that might not understand quite what chronic illness entails.  However, this semester I’m learning to take more time away from class if I’m really not feeling up to it.  Being there is all well and good, but if I have to take Vicodin and hydroxyzine to get through it, it might not be worth it if I’m barely going to be awake and paying attention.

As for my dreams… well, I’ve finally picked up that biology major with a biochemistry minor that I’ve been wanting to do for a long time.  Yeah, I’ll be in school longer, but at least I’ll be doing what I want to do.

Lhermitte’s Sign is super effective at scaring people away from me.

So for anyone who ever feels alone with their illness, I strongly recommend online support groups.

I am a member of a number of support groups through DailyStrength. Joining is free!

http://www.dailystrength.org/home

An Open Letter To Those Without Invisible Disability Or Chronic Illness …

chronicallyme1996:

Having an invisible disability (ID) and/or invisible chronic illness (ICI) means that many things change. Just because you can’t see the changes doesn’t mean they aren’t real.

Most people don’t understand much about these disabilities/diseases and their effects, and of those that think they know, many are actually mis-informed. In the spirit of informing those who wish to understand …

… These are the things that I would like you to understand about me before you judge me…

Please understand that being disabled/sick doesn’t mean I’m not still a human being. I have to spend most of my day being very careful what I do, and if you visit I might not seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker that ever. Please, don’t say, “Oh, you’re sounding better!”. I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome

Please understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing that five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either.

Please repeat the above paragraph substituting, “sitting up”, “walking”, “thinking”, “being sociable” and so on … it applies to everything that I do.

Please understand that the effects of chronic illnesses and many disabilities are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the bathroom and back, while the next day I’ll have trouble sitting up. Please don’t attack me when I’m worse by saying, “But you did it before!”. If you want me to do something, ask if I can and I’ll tell you.

Similarly, my illness/disability may vary suddenly, meaning I may need to cancel an invitation at the last minute, if this happens please do not take it personally.

Please understand that “getting out and doing things” does not make me feel better, and can often make me worse. Chronic illnesses/disabilities may cause a secondary/reactive depression (wouldn’t you get depressed if you were stuck in bed 23 hours a day for years on end?) but they are not caused by depression. Telling me that I need some fresh air and exercise is not not correct and probably not appreciated – if I could possibly do it that, I would.

Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something else more exciting. Illnesses and disabilities do not forgive their victims easily.

Please understand that I can’t spend all of my energy trying to get well from my incurable chronic illness/disability. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness or disability is coming to the realization that you have to spend energy on having a life while you’re sick/disabled. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness/disability.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought; and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with a certain illness or disability then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different chronic illnesses and disabilities, if something worked we would know about it.

If after reading that, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don’t expect me to rush out and try it. I might not even reply. If I haven’t had it or something like it suggested before, and it sounds reasonable, I’ll probably take what you said and discuss it with my doctor.

Please understand that getting better from an illness can be very slow. And getting better from an invisible disability might not happen at all. People with chronic illnesses have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out, if it ever happens.

I depend on you – people who are able-bodied – for many things.

But most importantly, I need you to understand me.

http://notdoneliving.net/openletter/id

I am epileptic and have some weird partial complex seizure thing, and lately it has been getting worse.

And it is getting embarrassing. 

It happens a few times an hour,

Pretty much my whole left side feels like it is being shocked by something. Not badly. Just that very uncomfortable clenching of the muscles and horrible tingling.

But it used to be just that, no one could tell.

Now my muscles are clenching badly enough that I start twitching.

It looks like I have a tic with my neck.

Someone asked my mother today in the store if I had Tourettes or was mentally handicapped. 

Facing the truth that things are going to change

fabyoufreakingloss:

I have to face the damn facts about my medical condition and what my future entails. As much as I want to play the Courtney Stodden stupid card I can’t do that anymore and some things in my life are going to have to change. My endo and IBS are both pretty bad lately and it’s time for me to face the facts that things can’t be the same as how they once were which entails:

1. I have to plan out my meals now and have to think about what I put in my mouth because the way I eat could make my IBS flare up which in turn will give me nausea and cramps from hell. So no more sandwiches, gluten heavy foods,pizza, mac and cheese,coffee, and a bunch of other foods I love.

2. I’m going to have to start carrying around a “Can’t Wait” card which by law allows me access to a bathroom god forbid I’m out in public at a store or something and have a flare up and they don’t have bathrooms open to the public. It’s embarrassing yes, but flare ups are unpredictable and uncontrollable. I think a moment of embarrassment having to pull out my card is a better alternative to having an accident let alone an accident while out in public.

3. As much as I don’t want to I’ll have to start to taking librax again which means taking another pill. I’m usually good at dealing with the cramping and nausea, but lately it will last from 10-3am and it’s starting to cut into my sleep schedule.

4. I’m going to have to talk to my doctor about either trying another IUD or doing lupron even though she hates giving patients lupron. I tried to do an IUD twice before, but the cramping while my body adjusted to it was just too much so I may give it another shot and tough out the pain because lurpon will put my body into a synthetic menopause at 23. Menopause at 23 is a tough pill to swallow because you can only take the injections for six months max and I don’t know if I want to deal with night sweating and all of the other gross side effects alone with it.

5. I most likely will have to have a second surgery since the birth control and pain pills don’t seem to be cutting it anymore. The first surgery wasn’t bad it was livable, but being bloated, not being able to walk normal without kind of doing the pregnant woman waddle,and it taking a month to be able to pee without feeling weird wasn’t exactly fun.

6. As much as I love to go out and “rage” for my healths sake I have to slow down and take it easy at least until EDC. It sucks getting all dressed up to go out with friends and having to break plans last minute because my stomach decides it wants to have a flare up or the endo cramps kick in I have to realize it’s truly out of my control. Some of my friends may see me as a send off or a plan breaker for those who don’t fully understand my medical issues, but for those who do I know they understand.

Long story short my life is about to change and although I should be 23 and care free the truth is that I hurt and I have to spend more time in bed than the average person. I can’t help but wonder what kind of future life I am going to live at this rate if I’m already bed ridden for a good portion of the week. I also wonder how I’m going to fully support myself in the next two years or so with constantly feeling sick or having a flare up. Although I worry I will continue to work and be independent even it means eating pain pills like candy through the work day. Whatever doesn’t kill you makes you stronger and in that case I’m a strong as steel.

Hey Guys!

I am going to be pretty busy this week, so I may not be posting too frequently, but I will try my best!!

My Birthday is the 16th and I am planning for that and also have a ton of doctors appointments. 

Also, I am currently reading ‘Chronic Fatigue Syndrome, Fibromyalgia, and Other Invisible Illnesses.” 

I strongly recommend it to everyone! I will be posting anything I find interesting in it.