Here is the blatant, unfortunate, truth about my body.
Currently:
I have constant or recurring inflammation in my small intestine (my large has already been removed due to this problem), my pancreas, my SI joints, my shoulder blades, my female organs, my skin, my muscles.
I am missing a crucial protein in my blood that is supposed to help me fight off infections. This means that I:
1. Catch contagious illnesses much quicker and more severely than the average person.
2. Get infections on my skin on a regular basis.
3. Cannot fight off infections easily and infections spread quickly and can turn severe quickly - can require hospitalization and iv antibiotics.
4. Require CONSTANT anti-biotic therapy to try and prevent further infections.
5. Have major episodes of tissue swelling that can happen on and in any part of the body - mine tend to happen in my legs, arms, hips, intestines, female organs, pancreas, esophagus, and face. These can be life threatening (particularly esophageal and intestinal swells).
6. When having an episode of swelling, my body will not respond to epinephrine or steroids in the manner that it should, and I require a specific type of blood plasma in order to gain control of an esophageal swell that closes up my throat. (Luckily, my swells have not fully closed my airway as of yet, thank goodness!!)
With that said, what my body DOES seem to like to fight off are my own organs - particularly my intestines, pancreas, thyroid, skin... This means that I ALSO have to be on immunosuppressive therapy on a constant basis.
My spine is not properly connected at either end, so I have a floating tailbone that likes to create problems by being out of alignment, and the top puts undesirable pressure on my Vagus nerve that causes major nausea and vomiting - especially when I try to stand or sit perfectly straight.
I have an eye disorder that is usually only found in people over the age of 65 years. I am losing my eyesight... And I started losing my eyesight (albeit very slowly) since I was 18 years old.
I have a circulatory condition that makes it extremely uncomfortable to handle anything that is cold with my hands, and usually results in the inability to feel my feet for most of the Winter (which, in Canada, is far too long). I always need to pay attention to the temperature of my extremities to avoid damage (and really, it's pretty painful, so it's nice to avoid pain too).
I have a blood vessel issue in my lung. Luckily it's not *technically* supposed to cause any issues because of it's location, but it means that I am at greater risk for blood clots and strokes.
I am not sure what the cause is - it could be linked to the swelling issue, it could be linked to simple inflammation, but whatever the reason, I get frequent and chronic migraines.
I have a disorder that causes severe and painful dry-eye and dry-mouth - the kind of dry mouth that takes your voice away and makes it hard to breathe until it is moistened properly. This disorder also causes major issues with my teeth and gums (which are also affected by medications and constant vomiting episodes)... Which means that I need fillings and frequent dental visits.
I have episodes of sleep apnea - usually caused by extreme exhaustion and by being far too rundown - my brain simply stops communicating with my body to breathe. It is not an issue of obstruction and is too difficult to predict. I have also had episodes of sleep that resemble narcolepsy (I do not have narcolepsy, it simply resembles the symptoms when I am extremely run down).
My energy levels are extremely low.
I have been through medicine-induced Menopause twice already, and will go through it a third time once I have a hysterectomy - which should be scheduled before the end of this year.
All of the above issues are aggravated by stress, excitement, anger, nervousness, anticipation, elation, frustration (basically any emotional extreme), by estrogen, by extreme weather changes, by certain foods, by abrupt changes in body (such as allergic reactions, accidental food poisoning, catching the flu, etc...)
Did I also mention that I have several allergies to medications (antibiotics, many immunosuppressants, biologics, NSAIDS, ASA medications - like Aspirin, Pentasa, Salofalk)...? Plus I have had major reactions to caffeine and chlorine (including throat swells).
I get painful cysts on my ovaries on a regular basis, and I once had a dermoid cyst removed (which could have maybe been a twin that I absorbed)...
Oh and I have a tachycardic heart (my heart rate is REALLY fast) likely due to my thyroid medication (at last we think that is what it's from)...
And my kidneys work very slowly. This does not often affect my life, but when I need to get pelvic ultrasounds, my body requires me to drink about 64oz of water instead of the usual 32oz. Otherwise, by the time my ultrasound rolls around, my bladder is still empty.
None of the above can be cured.
I am on as much medication as I can possibly be on right now to *help* me live a relatively normal life.
I am doing everything that I can to lead a normal life.
I cannot predict when any of the above will flare-up, nor when I can expect to have good moments, good days or bad months.
So what do we learn from all of this?
I need to keep emotionally neutral, I need to live a stress-free life, I should have been a boy, my immune system hates my organs, my body wasn't put together quite right, my eyes (internally) look like they are over 70 years old, I have to put gloves on to handle anything from the freezer, I sometimes stop breathing when I sleep, I will go through Menopause three times in my life, I may have had a twin, I will lose most of my eyesight, I need to constantly pay attention to foods and reactions, I keep a medical journal to document SEVERAL factors that *may* be involved in my health, I see over 10 specialists on a very regular basis, and I have NO way of knowing when I MIGHT have bad days, good moments, major or minor episodes, or how my body will react to ANYTHING new.
My blessings?
Too many to count. I have an unmatched support system and a wonderful life because of it.
And let me be very frank here.
No, it is not inevitable that any one of these will kill me. But it is possible. And, furthermore, if I wasn't lucky enough to have the doctors and therapies that I have, I would very much, most likely, in all probability, die. The throat and intestinal swell alone could kill me - from something as simple as getting too excited for a date.
This is my best (although winded) explanation to those who ask why I am unable to work, and also to those who say (with judgement):
"But you don't LOOK sick."