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.

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

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.

False negative blood work:

Proof that any kind of supreme being of the universe is a cruel being. 

 I want you guys to tell me if there is every anything you want me to post about. I have plenty of free time and always love doing research. If you want a symptom list of a certain disease, just ask. If you want me to write about anything in specific, Just ask!!

~India

Superheroes in Hospital Gowns

Pain changes people in ways you could never imagine. Be it physical or emotional pain. The change could be good, it could be bad, it could be so many things. I have seen so much of both. I’ve seen pain turn people to suicide and drugs. I’ve seen pain take away the heart and soul of people I love. I have also seen pain turn people in to superheroes. This is the story of those superheroes.

I used to be good at everything. I was a straight A student and a star athlete. I competed on a national and international level in rock climbing and horseback riding. I was also a dancer. I only danced for a few years but I loved it. It made me feel beautiful no matter what. I helped teach and coach younger kids and I don’t even remember how many times I heard one of them say “I want to be just like you when I grow up.”

Then in the fall of 2007, I got hurt. I hit my head. Hard. I went to the hospital and they said I was fine. They stitched me up and sent me on my way with the diagnosis of a ‘mild concussion.’

Everything changed. I lost a good part of my memory which led to mental disorders. I had to relearn so much about myself and the way the world worked. I also developed very severe migraines.

I have had a severe migraine every hour of every day for 4 years and nearly 3 months. The first concussion was followed with four more. None severe, but all making the headaches just a little worse. I have had countless interruptions to my education because of my headaches, but they always drove me to do more.

In the last year, my health began declining more rapidly. New problems started appearing. Low grade fevers without a cause, extreme fatigue, fainting spells, joint pains, and worsening cognitive difficulties. I have undergone countless tests and procedures to figure out what is wrong with me, most resulting in inconclusive findings.

No one wants to be like me. No one wishes they were me. No one envies me.

But I wouldn’t trade my life for anything.

My illnesses and everything I have gone through make me who I am. I like to think they made me a better person. I learned who my real friends are. I learned never to take anything for granted. I learned to express myself in new ways. I learned to help people. I have made countless friends over the years when someone reaches out to me for help. People have come to me for advice about different conditions and doctors. In the words of Mark Pickup, a man disabled with multiple sclerosis, “I have been of more service to the world disabled, than during my able-bodied years. That did not happen despite my disability, but because of my disability.”

I used to be good at everything, but now I am great at something: Helping people. I only hope to get better at helping, by achieving my dreams of becoming a doctor. My disabilities changed my world forever. All I can do now, is hope to change the world in an even bigger way. 

Autonomic Dysfunction

Signs and Symptoms of  POTS and other Autonomic Dysfunction

Musculo-Skeletal:

__ Muscle weakness

Neurological:

__ Brain fog

__Decreased mental stamina

__Difficulty finding the right word

__Headaches

__ Impaired concentration

 __Disorientation

Cardiovascular:

__ Fainting

__Low blood pressure

__High blood pressure

__Tachycardia (fast heart rate)

__Lightheadedness

____Dizziness

Respiratory:

__ Chest discomfort

__ Difficulty breathing

Gastrointestinal:

__ Abdominal pain

__Nausea

__Vomiting

__Bloating

__Constipation

__Diarrhea

Psychological:

__Chills

__Depression

__Anxiety

__Sleep disorder

Other:

__ Overheating

__Excessive thirst

__ Flushing

__Extreme fatigue

__Tinnitus (Ear ringing)

__Visual disturbances

__Cold extremities