How Rare is Rare?

When every medical diagnosis I have is considered rare, I want to know how rare is rare? Ehlers-Danlos Syndrome, Raynaud’s Syndrome, Celiac Sprue… the entire list is much longer than that and as of yesterday has a new contender. I found myself laughing when my doctor said, “Well, It is rare… but there is a name for the skin condition you have.”

I wasn’t even aware I had a skin condition. I always thought I was just dirtier than the other girls, and that my skin just sucked. I used to shower up to six times a day, though that made little to no difference in the quality of skin. I have lesions, blisters, boils and abscesses constantly. I thought this was normal, and that everyone got them at least sometimes. The name of this condition? Hidradenitis Supprativa. This condition is considered an actual disability according to the government.

I know why personally. For one, there are days when I can barely move my arms and walking, beyond the agony of the broken bones and hip issues I already have can be made worse by the damaged skin in my groin. Psychologically some of my most depressive days are the result of being infected, sweaty, and often worrying over spreading infection to others. Now that I know the name of the disease and have some knowledge I am aware that I am not going to infect anyone with it. It is rare. It is genetic.

I want to know what the mortality rate is with this disease. Some might say zero but I remember just wanting to die when I had my first really bad abscess. I was at work, and my nice shirt was ruined by the pus and blood because the boil burst before my break. I hid more shame, and beyond wanting to hide, run, or just cut my breasts off I considered killing myself. The never ending work of trying to get everything done, trying to be clean enough? That day I could not fathom selling anything, hefting the heavy boxes of dishes, and what about the smell?

Infection is not a clean smell. Neither is sweat. Being a teenager I never felt pretty. It took me becoming an adult to start seeing past the little things. Still, attending a friend’s wedding my thoughts were how to make certain my formal wear would not retain the odor of my sweat, on how to make sure that no one could tell. I am now entering the mourning stage of a new diagnosis. I mourn the times when I cut out my own abscesses. I did that last week. I have never once considered seeing a doctor when my breasts split open. It happens so often, that it is normal to me to self care.

This brings me to another point where I was accused of Self Mutilation as a teenager. Beyond having actual issues with that due to the severity of my depression, there were times when I was told I had to have cut myself in order for my body to be so gory. I was sent to a therapist for it. My body has scars, open wounds that have been around longer than some of my siblings, and my mind has been shaped by this disease.

The other effect of more rare diseases that are incurable is this. Can I escape being disabled? How inevitable is it for some of us to wind up with our bodies breaking us down? My body is out to get me. How can I function like this? What is next? Is breathing going to become a forbidden act because of something rare and genetic?

How can something like this really be rare too? Some of the research I did today indicates it is related to acne, though it is not acne. What if it is not as rare as all that? What if more people have it, undiagnosed and are losing out on their quality of life?

At this time there is no treatment. I will be updating my disabilities page, and I will find ways to help others like me. The more people who know, the more the odds of a treatment being created increase. I currently treat the breast area with a steroid cream, though, this is dangerous to do for your genitalia, and therefore half of my effected area is untreatable.

There is nothing that relieves the pressure, beyond bursting the abscesses. There is nothing that relieves the burning sensation, and there is nothing I can use to cut down on the sweat. Sometimes saline solution helps to dry me out, but, there is nothing that has a permanent or even reliable effect. Antibiotics have helped some, during the worst part of the cycle, yet not for me.

I am tired of being rare. I am tired of waking up in the middle of the night and squeezing puss out of my breasts. I am tired of denying myself sex, when I truly want it, because I fear being disgusting or the pain is too great. Sex is important to most people, me included, but my body is attacking itself and eventually my genetalia may be scarred so deeply that I can no longer function sexually.

In a long term relationship, this has an effect. It is not positive. As a woman, I have had a lot of challenges facing my femininity, partly because of this disease, but this adds another facet. If I cannot pleasure my partner, and vice versa, what are the long term side effects psychologically?

I am rare. I am one of the rarest people you will ever meet. My pain is rare. My skin is rare. My eyes and hair, and my entire body is a rare example of surviving despite it all. So is yours. So is the man on the street corner in the business suit. So is the single mother. Rare is not rare at all. For every diagnosis of a rare condition, countless others are never discovered. Statistics are faulty, when not every case is discovered, so how can we truly understand rare?

Info Links on Hidradenitis Supprativa:

http://www.hs-foundation.org

http://www.hs-usa.org

Ana Phalaxis- Super Villain!

I made a mistake. I ignored symptoms that could have killed me last week, during an allergic reaction. I have become so used to stifling my own needs through the years of surviving and it nearly killed me. I also have a limited education by my medical staff on how to handle my reactions, most of them writing off my lists of allergies as an attempt to get out of eating food I do not like.

I am not a hypochondriac. I was diagnosed as one when I was a child, because invisible illnesses are very complicated and my mother never told new doctors about the existing diagnoses she had. I have multiple diagnoses that were remade as adults, and only then did she actually believe that these disorders could effect my life.

I was sent to a mental ward for being in pain. This sounds preposterous doesn’t it? Your child is suffering, so, you have her locked up because it must be all in her head. You have her trained in how to lie to herself, so that she will take herself seriously.

I do not personally believe Hypochondria exists. Part of what makes the diagnosis work is that you supposedly get something out of your claims of pain. I never did. I remember telling my mother when my hands hurt, visibly swollen knuckles that would barely bend, and I was told to stop being lazy. This denial and imprisonment escalated changes in my fragile mind, which caused more issues.

Even now, as an adult, I can hardly acknowledge when I need help. I have a caregiver who I still forget to ask to bend and pick things up. I am physically unable to bend over without fainting, yet, I tell myself to not bother him. He is paid for this, which has helped me begin the process of healing, yet, I still hurt myself out of habit.

I did make it do the doctor in time, it took me three days. Three days of being barely able to swallow or breathe, and three days of repeat attacks without exposure. I also could not eat. Then, and only then did I seek medical help. The last time I went to the ER for an allergic reaction was when I was very small, usually I self medicate yet, I also know just how stupid this is.

This time, in the ER I had an experience that woke me up a little. I had a doctor who not only took at least ten minutes of inspecting my body and asking questions about my needs, but, he never once denied that I have severe allergies. Instead, he prescribed the necessary medication to help me heal. He also suggested I try and see an allergist, because the severity of my reaction without eating the food is rare. Most people with food allergies actually have to at least put the food in their mouth or to physically contact the substance.

I have documentation of my reactions changes, and I do not doubt that my primary care physician will send me to an allergist but I do believe that this reaction will change the level of care I receive. Last time I went to an allergist they gave me the blood and skin prick tests, yet they claimed that I did not react to either. Instead of telling me that I do not have allergies, I was told they were merely minor, and nothing to worry about. They took away the epipen, despite my having gone into anaphalactic shock repeatedly in my life. Not once, not twice, but over 20 documented times.

I am only twenty four, and my body rejects so much but, my allergies are not severe? This confused me, yet I did my best to follow orders, though, the doctor turned out to be wrong. There are other tests they could perform to check for allergies, yet, I am hoping this time all it takes is my handing over a list of the foods I react to.

I am still struggling to breathe today, but, I can think once again. My throat is still visibly swollen, but my inhaler for asthma is finally making a difference and I can feel the air in my lungs. The doctors are worried I will develop pneumonia now, though, because my lungs shut down for so long without treatment and even when I went in to see the doctor my heart was responding to the reaction.

I did spend the last few days reading up about allergies, reeducating myself, reinforcing my value and the value of my body and it’s needs. I need to protect myself, I need to love myself, and I need to teach the people around me how to identify anaphalaxis.

Until this experience as an adult, aware that it is not all in my head, I have always thought anaphalaxis meant I had to go to a doctor to survive. My thoughts were wrong. Some people survive anaphalaxis without medical care, though the extreme nature of the reaction does make this often true, there are some reactions that are still Anaphalaxis that do not kill.

In all of the times I have known about being in Anaphalactic shock I did seek doctor’s care, but, the times I have dealt with the symptoms of an attack, the times I have felt my throat starting to swell, my head getting light, and the times that my hives have burned through me, causing fevers and chills? I have no idea how many times I have dealt with that.

I am going to write an educational program with my doctors’ input to teach people about allergies, or I am going to find an existing one and take part in educating myself and others. Education can save myself, and it might make it easier for me to ask for accommodation with my allergies.

I do not want to spend the rest of my life in the apartment, I do not want to have to hide anymore. I have stopped attending too much of life’s fun parts and I miss it.

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