019: Conveniently Sick.

It has been said that I use my sickness to my advantage. While obviously these words cut a part of my soul I did not know words could penetrate. In hearing this I realized this person and others really don't fully understand the weight and depravity of such a notion. Nonetheless, it made me realize that there is a level of difficulty understanding invisible illness. Ironically it reminds me of the concept of faith, just because one does not see it, does not mean it is not there. The reality I face everyday isn't easily graspable because it is invisible. But the thing is, I am not invisible, I am not faceless and my illness is very real, even if I myself have trouble accepting this. 

In light of this, I am going to admit out loud what it is like for me to have a chronic invisible illness. I am going to try and explain the challenges that I face. I'm writing this down for you, and for me. Maybe in acknowledging what I endure, I am able to start 'cleaning out my closet'. By being completely transparent about how my life has changed so drastically over this last year, it may help you understand what someone you know may be going through; and for those who think it's an advantage, what I am going through. 

**DISCLAIMER** I'm not the representative for #chronicillness patients across the world and I cannot speak for anyone's experiences but my own. There are levels of severity to every autoimmune disease and these diseases effect each individual differently regardless of there severity. I personally have moderate to severe Crohn's Disease, DLE Lupus, DRESS Syndrome, and a malignant small intestine tumor. 

I would list who I used to be before getting sick but I won't, I'll say that I was just like you, I lived my life as I saw fit. 

Anyway, here we go...

Medication: 

I have already stated in several of my blogs that I take 17 pills a day. I take methotrexate and thiopurine. They are both "cancer drugs". I take Zofran for nausea. I take Entocort (budesonide), Ambient (zolpidem), Protonix (pantoprazole), Atarax (hydrooxyzine), and vitamins. I was on Cimzia, an immunosuppressive drug that suppresses my immune system and makes me more susceptible to colds and infections. I now actually take a new immunosuppressive drug,  Remmicade, because my body stopped responding to Cimzia. Once a week I go to the doctors office and sit for 4-6 hours to get infusions, the medication is dispensed directly into my blood stream. The medications I take are so strong I actually cannot have children. It would be too great a health risk to carry a child without medication but run the risk of birth defects to carry a child on medication. Before I've even had the opportunity to start a family of my own, the option has already been taken from me. 

Physical Appearance:

While some days I look completely fine on the outside, I'm miserable and a storm is raging on the inside. Other days I look like a half-dead walking corpse. One moment I am fine, then the next moment sometimes without any prodding (activity, food consumption, or trigger), my body flips the fuck out. For example, Monday I had lunch at the Marmalade Cafe, not a minute after I finished what was my last bite I threw up my-- medium-rare lamb chops, sautéed spinach, and plain no-seasoning mashed potatoes--lunch. I hadn't felt amazing, but I didn't feel "public scene" flair-up either. Then there are other days, things I usually eat--watermelon, poke, cucumbers, spinach-kale-apple-mango-strawberry smoothies--will make me physically sick or they won't. I'll be on the porcelain throne for hours. If it is not coming out of one end, it's the other. Everyday, every moment, it's a coin toss.

I don't sit in the sun for very long anymore because my skin develops a red painful rash. Sometimes I wake up with this rash without having seen the sun at all. It most commonly appears on my face, around my hair, on my scalp, and on my legs. Sometimes it's very painful and sometimes it's just itchy and annoying. When the "butterfly" shows up on my face--a red flaky rash that appears on my cheeks, nose, and mouth area--I wear make up to hide the discoloration. 

Fatigue:

I am often so tired after the simplest things. When I say tired I do not mean sleepy, I mean physically exhausted. Drained, sore, overworked, or over exerted. Think of the feeling after an intense workout or a long hard day of physical labor. I sometimes need to rest throughout the day to complete tasks or sometimes I have to rest the entire next day after being "actively normal" (read--doing what normal people do like work or school or a daily activity). Walking to class, taking a shower, cooking a meal, cleaning my room, washing my clothes are all things that exhaust me to name a few. Not always, but sometimes. Sometimes, the smallest tasks seem impossible. When I am alone or not in public I often cry tears of frustration. I want to do things so badly but I'll be physically unable to move. I can't make my body do things even when I want too. Then other days I am unmotivated to try any of those tasks because I wake up after my 2-3 hours of sleep tired, sluggish, and groggy. Then there are days I feel so amazing I forget I am sick. I'm sure you are thinking "well why don't you try to do things anyways"? Believe me I do, I sometimes physically force myself out of bed and attempt to conduct my day as "business as usual" only later to regret it. I wind up flaring, being unable to finish the day, or needing to physically sit down for a few minutes between activities.

Physical Activity:

After surviving DRESS syndrome my body took a substantial hit in the physical activity department. I literally could not walk, get out of bed, bathe myself, do my hair, or any other "normal" regular activity without assistance. I slowly got stronger. I was able to walk and conduct daily activities without the assistance of a wheelchair, reacher, loftstrand crutches, or a walker. But I haven't yet managed to attain the level of physical activity I could before being diagnosed with DRESS. Doctors haven't determined if it is nerve damage or simply my body underwent so much stress it never fully recovered. I still get random ataxia tremors where my legs, arms, or hands will shake uncontrollably. I'm unable to hold things like the gallon milk cartons and pour them without making a mess. Lifting anything over 20-30 pounds feels impossible and causes tremors. My three nieces hate this the most, the love being picked up and coddled. I've learned to pace myself while walking, pouring things, or basically while doing anything physical now. I no longer get frustrated when I reach my "limit", I've learned to accept help, and use my assistive devices when I need too. 

Pain & Pain Management:

Then there's the pain. The dull achy never go away--sitting, standing, or existing hurts--pain. It's not always the sharp excruciating pain that pangs me and quickly flees. It is more consistently the slow burn, throbbing, period cramps on a trillion, lasts several days or several hours pain. Because I also have DRESS Syndrome--a rare less than 10% of the world population anaphylaxis on steroids severe potentially fatal reaction to prescription drugs (aka generic fillers)--autoimmune disease. When I am in pain, I can't just pop a Tylenol or an IB-profen. I have to take Level 4 legal drugs: narcotics, opiates, TANF pure hooked on phonics legal drugs. The kind that usually lead to addiction. I have the added bonus of having liver failure (necrosis) last year, so I have to continually monitor my legal drug and alcohol consumption. So when I am in pain I have to make the decision of exactly how much pain I am in and is it worth putting the additional stress on my liver.

I actually function everyday with a certain level of pain. In the hospital they make us rate pain from 1-10, one being no pain really and ten being I'm on my death bed. Once you've experienced an actual certifiable level 10 pain you'll do everything humanly possible to never go back. I keep a daily private journal of what number I am at throughout the day, everyday. This number frequently changes. But my threshold is 5, I am accustomed to my pain level being 5 everyday. I can sustain human interaction at 5. I know that I can tolerate 5. While what is five for me, may be 10 to you or vice-versa. I broke my arm in high school and didn't cry. I regularly dry heave and throw up without batting an eyelash. So you get the idea. But for comparison sake I'd say you know that feeling you get when you initially stub your toe pain? The first day of your period cramps pain? Toothache, ankle sprain, or any dull annoying it hurts but I'm not dying pain? That's my 5. This pain is something that is constantly with me, it never leaves and I indeed always feel it. Even on good days. I contemplate taking pain relievers at 7-8, because once you get passed those numbers it is very hard to get back down to a 5. Once you've gotten to 10, it takes Dilaudid, Percocet, or Morphine every 2-hours to get back down (yes those are my prescription pain pills, even if I could take Tylenol it'd be like eating a skittle). And that likely means I am on my way to the hospital and sky high.

Nourishment/Weight: 

Aside from the pain, the residual and unintended affects of invisible illnesses are also a part of my daily reality. The ones that don't seem like challenges until they become them. I once said that I lived in fear of my own body. I am terrified of what and when it might do. So much so that I have developed an eating disorder. Aside from my medications actually suppressing my appetite, I have a literal fear of eating food. Because I never know if something I eat or drink or don't eat or drink will lead to a flair and more pain; I have developed a food phobia. I've lost 17 pounds in the last month and nearly 50 pounds the last year (steroid weight included). Obviously it is not on purpose and I do not tell you to brag, I'm just being honest. I'm literally damed if I do and damed if I don't. I have lost so much weight because even when I do eat, if I vomit or defecate it out before my body has had time to absorb the nutrients I am not gaining anything from it. At the suggestion of a classmate I asked my doctor about Total Parenteral Nutrition [TPN] therapy. TPN is a process of delivering nutrients directly into the blood stream. I get this twice a week. 

Emotional/Mental: 

The last and most challenging aspect of my new reality is the emotional and psychological toll it takes on me everyday. Aside from the real and imagined fears of foods and medications that have sulfa (drug that revealed I had DRESS), managing the rollercoaster of a chronic illness wears me down mentally. I battle the spirit of depression daily, I am never more than a flair away from losing it. Succumbing to my anger, sadness, bitterness, or hopelessness. I am simultaneously grateful to be living and devastated at the quality of my life. I was once told that coming to accept myself in context was important not because other people have it worst, but in doing so I may find a way to embrace all that I am. Writing this blog, reading for classes, engaging in riveting political discussions, and Netflix-ing are all things I do to distract myself from focusing on my circumstance. 

However, I often feel alone because the people in my immediate vicinity are mostly college aged prime of their lives healthy folk. I am inadvertently reminded every single day of how I am different. My classmates travel, make plans for the future, and focus their attention to solving the world's policy issues while I'm just fighting to stay alive everyday. Between fighting my own body and overcoming my own thoughts I've come to shield myself from them. I insulate myself with three people I trust to confide in. I often feel I burden them with my emotional vomit, omitting many of my truths when we interact, pushing them away while holding onto them dearly. 

So... 

At best being sick offers me a perspective of immense empathy to folks I encounter, wondering what they too are also battling. At worst, it's a degenerative debilitating embarrassing painful struggle. I alienate myself as a defense mechanism, protection from being close to people and allowing them to see my hurt. Whether the 3 I trust at school, my FRONT ROW of FIVE, or my family; I concentrate my attention on solving their challenges. Attempting to make their lives a little better, a little brighter, and a little easier having had me in it. Somewhere inside of me I do believe this is a part of some grand design, but in my daily reality it's difficult to see the sunshine while it constantly rains. So forgive me if I do not believe I am EVER conveniently sick. There is nothing about bearing the weight of an invisible illness that is convenient.

Ox.