My Disabilities

To understand why I write so much about disability, you need to understand or at least know, how much it has impacted my life. I am of the school of thought that says you can adapt to any disability, and that is why I am out here, writing and trying to keep going. Some days, I think I am wrong. Here is the list of medical ailments that are currently plaguing me.

1. Ehlers-Danlos Syndrome – A supposedly rare connective tissue disorder that causes everything to be stretchy. I am so flexible that I can barely move without dislocating something, but, I don’t have the super stretchy skin. Who woulda thunk?

2. Reynaud’s Syndrome – A circulatory disease that causes your extremities to lose their blood flow if you get too cold, too stressed, and sometimes if you don’t eat right.

3. Celiac Sprue- An auto immune disorder that effects your digestion and is triggered by the gluten found in Rye, Wheat, Spelt, and food like that. It can cause debilitating pain, malnourishment, and is dangerous. It also has the side effect of missing Pizza.

4. Oral Allergy Syndrome – This is the umbrella term for my massive allergies that the doctors gave me, as I react to foods but not outdoor plants, and I do not react to blood tests or the skin prick test yet I go into anaphalactic shock with most of my allergies. I am unable to eat vegetables, except some corn, Grain, except rice sometimes, Most fruits (Even Grapes), and Milk. I can have processed milk products such as yoghurt and cheese, even ice cream,  but straight milk makes me sick.

5. Multiple Chemical Sensitivities – If I am around it long enough I become allergic. Medications such as Tylenol now cause severe reactions including hemorrhaging. Febreeze is the worst though, I stop breathing and react about the same as I do with a freshly sliced cucumber, the particles in the air are out to get me.

6. Multiple Breaks in my Back and an SCI- I have multiple vertebrae that have slipped, some are broken, and a few are crushing through my spine. My sacral area is the worst, I have a gnawing claw shaped break that cuts into my spine and will eventually sever it. Due to the location and my other disabilities it is untreatable. The other break is between my shoulder blades. I sat up straight in December and had two discs crack under the weight of my chest.   I use a scooter but at this time, I do walk some. I can go about ten feet before I collapse.

7. Nueropathy- Before my back injury I was assaulted over a candy bar in my college art class and had a student twist my arm so hard that the bones turned around and the nerves tore. I had to work to hold a pen and a pencil, and suffering from Dysgraphia before this occurred, has added to my pain greatly. I no longer draw though I have begun to paint with my mouse again.

8. Post Traumatic Stress Disorder- I have had a very traumatic life by most standards. At this time it has been a week since my last flashback, though before that it was almost a year. I consider my self management of my psycholigcal condition mostly under control, though, at times even I have trouble fathoming what I have experienced. Details might come out in this blog, but, I will share a few here. My biological father is a sociopath. He used God as an excuse to try and kill his children daily, and the EDS (Ehlers-Danlos Syndrome) was all that saved me some days. This is just one small example of the things that have caused traumas in my life, though, they do not rule me any longer.

9. Hidradenitis Suppurativa: A rare, genetic skin condition that may be triggered by environmental things. The disease has several stages, starting with small boils and ending with giant networks of constant infection. The only treatment is often surgery. The condition is identified by it’s boils, abscesses, and excessive sweating.

10.  Autism Spectrum Disorder. -It effects communication, socialization and has explained a lot of my quirks and eccentricities. I am still learning about my autism, and coming to accept it. The information I share here may be updated as I become educated further.

11.There are more things that will be added to this list, I am in the process of testing for Cushings Disease, I have had skin cancers removed, as well as strange tumors that my doctors aren’t sure what are yet, and I have even had rare reactions to medication such as Purpurah. I think that is how you spell it, I just remember how it felt to be honest with you.

This is not a short list, and, a lot of the disabilities are hidden. Most of the time, if I am not in my wheelchair I look just like anyone else. This caused some problems with my childhood, because you cannot be in pain if you aren’t bleeding right? Someday, I will post about Hidden Disabilities.

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12 Comments

  1. Wow, thats a lot of stuff. Have you looked into EFT? That can probably help you heal most, if not all, of those issues: http://www.yangtown.com/inner-game/how-to-overcome-any-fear-in-minutes-using-eft/

    You can view the video on that page that shows how people how used to it overcome things like multiple sclerosis, diabetes, and other hard to cure issues.

    Blessings,

    Ryan

  2. EFT did not help me. I appreciate the suggestion. It is a lot of stuff, and there are more things not on the list that should be. I do not believe in overcoming disability, to me that sounds like my disabilities and their associated personal growth will magically disappear. There are no cures and few treatments for many diseases especially those that are rare.

  3. Hi Keterryna, My name is Margaretand I live in Melbourne Australia. This is the first time I have visited your site. And my O my what a site (I say that with admiration) I write because I am on the the E Conference list and Andrea has suggested that she had found oomething in my repies that looked like I woudl be interested in blogging. Then I saw your congratulation to all participants and thought I would “have a bit of a gig” as the saying goes. I like it. I have in my usual style written a ‘gulp’ longish letter to Andrea thanking her and given her a bit of insight to myself and my reasons for being such an “angry” community/voluntary support worker empowerment advocate and advocasey activist, boy is that a mouthful. If you have any ideas about going into the field of blogging I think I am ready to hear and think about them. I told Andrea that I did not thingk it beyond my reach. Thank you for taking the time to read this. Margaret.

  4. Wow..I never knew that. It must suck.

  5. Kate, I have been trying to understand what you are meaning since you posted this. Can I ask for clarification? It might just be me misreading or something but I am not sure what sucks exactly. I have ideas but can you be specific? Blame it on the medium of text if you will but, I just want to make sure we’re communicating clearly.

    Yours,

    Kat

  6. I am study an advanced genetics class studying connective tissue disorders.And I work as a nurse caring for patients and families with cancer. I see tragedy everyday and yet I am amazed and inspired by my patients on a daily basis. By their hope, and courage. This blog is very informative and has touched me keep up the great work.

    Sherry

  7. Again, Kateryna, thanks for your frank honest and informative thoughts. I have much to learn about pushing through and being a victorious survivor, not just a survivor but a victorious fulfilled one. I shall visit often.

  8. I look forward to your visits, and thank you for your encouraging words. There are times when I feel that all I do is babble. Then again I try to not post those bloggy posts.

  9. I am a nurse (MSc.) that has suffered with Hidradenitis Suppurativa (HS) for many years. It wasnt until I researched my symptoms in my first year of university that I became ‘hot on the trail ‘ in terms of its diagnosis and natural course.

    After four years of meticulous research integrating all of the very complex information from the neuro-molecular level to the genetic polymorphisms (expression of differing genetic mutations and defects that occur in ones DNA) I defied all of the dermatologists (12 incorrect diagnoses) including my family doctor. I insisted that I be assessed for HS by an internationally recognized dermatologist. Fortunately for me, he was an attentive, patient and open minded professional (perhaps this is what had made him so successful).

    After thorough clinical evaluation, blood tests, and reports from previous biopsies he concurred with my diagnosis. The family doctor had been cautious with the breast mass and referred me to a surgeon who performed a biopsy and lumpectomy a number of years before. I was astute enough to suspect that it might contribute some useful information and had kept a copy of the surgeon’s/pathologist’s report. It did as it was consistent with the granulomatous histology/pathology unique to HS.

    Since 1994, I have very gradually become more and more severely chemically sensitive to the point that I could barely remain indoors without becoming terribly ill (killer migraines, persistent vomiting, intense pain in my head, muscles and joints , and had difficulty with breathing upon exposure to such triggers as scented products such as perfumes,hair products, newsprint, Bounce and Fleecy type items, gas emissions, human and carpet deodorizers, Febreeze, and many others. As well, I have experienced numerous food and drug allergies- some serious and others pre-empting full-blown anaphylactic reactions which are of course life-threatening.

    Due to the incredibly high level of stress in my life over the past 15 years, I have suspected the onset of Cushing Syndrome. After some recent research, I have noted the advance in HS literature that just as there is a significant co-morbidity (incidence of two conditions occurring together) of Crohn’s Disease in HS, there is also a ‘link’ with Cushings Syndrome. I have to question what it is that HS sufferers have in common to yield this result. Quite possibly it is the chronic strain on the adrenal glands that affects them in that way. More specifically it ‘up-regulates’ (throws the system into a more intense phase) the immune system which works closely with the neurological /central nervous system(CNS) and the endocrine system (hormones).

    I think that it is no coincidence that there are so many medical problems plaguing people with HS. I may be wrong but I believe the reason for all of the problems is due to the fact that HS is part of a much larger medical condition. The one that I am presently researching is called Chronic Granulomatous Disease. That too may very well be part of an even greater category of Inflammatory diseases. Only time will tell. Meanwhile, Keep up the good work you are doing for yourself and for others.

    My best advice to all – listen to your instincts, do your homework re research. Assert yourself but with respect for others, Always follow-up. Keep questioning until you get the answers that satisfy you. Seek out those who can help you ‘put the pieces of the puzzle together’. If one is not helpful, don’t give up! Search the internet for someone who will communicate with you via the internet and use e-mail so that they could help direct you to THAT doctor. I am much better for having done that.

    As much as I am still experiencing medical problems, I am pushing other medical professionals to question with an open mind and to upgrade themselves. As educated and knowledgeable as they are with there experience and skills, there is so much more that doctors need to learn in order to do what they are supposed to do….help alleviate suffering . At the very least, they should ‘do no harm’ by insinuating that if they can’t successfully treat something ,it must be of a psychiatric nature. That is so inaccurate and harmful.

    Good luck to you and to all who are lost and/or suffering.
    G-d bless you all. we need to be understood and loved for what we were born with and or acquired over our life’s journey. Most often it is not our fault and where it is we need to assume responsibility so as to bring about positive changes.

    Rochelle

  10. Thank you for your very indepth reply. I am out of words right now but I read it all and am grateful for the thought and time you put into this. There are a lot of things to think on but I agree trusting one’s instincts seems to be the best medicine for ANY condition.

  11. Hey there. Another EDS just looking for answers. I think you may have solved one of the *mystery* symptoms for me (Hidradenitis Suppurativa). Many thanks. Will be in touch. Be strong and keep writing!

    ((gentle hugs)) and big thank you.

  12. Thank you for taking the time and effort to share your story. Your courage and ability to persevere in the face of an absolutely enormous amount of health problems give me hope and strength for my own newest issues (EDS and some related stuff). The information exchange is so helpful and appreciated also as trying to find doctors who are knowledgeable or who will listen and believe is totally ridiculous! I have a friend who is much sicker than I with a long list of issues. She was finally given a name for the hidradenitis but her severe allergies and gastro probs, along with other issues are are so bad she is now suffering malnutrition also. I am wondering if she may have the Ehler’s Danlos syndrome also (lots of similarities in symptoms) though she is not actually keen on getting yet another diagnosis (from me that is). Thanks again. You are amazing and fabulous and very inspiring!!!


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