My Story, The Abridged Version

Life just hasn’t turned out the way I thought it would.  I freely admit I lived my life fast and hard, burning the candle at both ends until, unfortunately, I was 26.  In that time I managed to get a BA and an MBA, have two completely different careers, and live and travel all over the world.  I never knew why I attacked life like I had limited time…perhaps I knew.  At 26 after coming home from an amazing year in Australia, while I completed that last courses of my masters an inguinal hernia appeared.  It took the doctors a while to find it (which I know to be normal now, but was pretty appalled at the time) but I finally saw the right doctor and there it was, plain as day.

Me in Aus, I had no idea what was coming.

Me in Aus, I had no idea what was coming.

So, I had surgery to fix it, you know, like you do.  The recovery was excruciating and after several weeks with no improvement, I went back to my doctor, who took one look at my incision and informed me I was infected and rejecting the mesh he had placed in my abdomen.  Another surgery was required to remove it.  Again, I went in, again I came out, again, my condition worsened.  I had this terrible sensation of tiny needles constantly poking a very sensitive area (look up inguinal).  It also felt like it was on fire most of the time.  I was completely disabled by this pain.  Even on meds like morphine and Oxycontin all I could do was lay in bed, curled around an ice pack trying not to scream.

My Life

My Life

In the following year I learned all about the evils of insurance and our medical system.  In a final gamble for my life I went ahead with an off label (meaning insurance won’t pay for it) treatment, placing a spinal stimulator peripherally (in my abdomen).  It was a success, for certain values of success.  I was NOT pain free, instead it confused the pain signals enough that I could function, but only function, not really live.  That surgery also had a few complications, the wires attempted to leave my body, twice, which can be awkward.  This required two more surgeries to correct.  So, doing the math on that year I had the two hernia surgeries, the trial surgery for the implant, the implant surgery (6 hours that I was awake for) and two revisions for the wires, that is a total of 6 surgeries, in a year for someone who had been a healthy active 26 year old.

This is what the stimulator looks like, except mine is in the abdomen.

This is what the stimulator looks like, except mine is in the abdomen.

During that time my body just deteriorated, I started having major seizures, I hadn’t had any issues since I was a child.  I was hospitalized multiple times, but my EEGs were always inconclusive.  They gave me meds anyway and if you have never had them, antiseizure meds are made to suppress brain activity, talk about trying to function through a fog.  I also had these wild flushes that came out of no where, felt like a major sunburn, covered random parts of my body, were miserable, and went away just as randomly.  Also a mystery to the medical community.  They did a brain scan and said that my brain had several lesions and looked like classic MS, they just needed a spinal tap to confirm.  The test was negative, the doctor informed me of the results, shrugged, and pretty much informed me I wasn’t his problem anymore.  He was one of many.  Like so many others, I was bounced from specialist to specialist, shrugged off, dismissed, and, of course, informed that it was all in my head.

a-crazy-people1
Through all of this I was struggling stubbornly to keep my job.  I’m a project manager for a major medical device company and I gotta tell you I LOVE my job.  I learned sooooo much, about our devices, about the industry, about the dealing with the FDA, about successfully herding people to a given goal, and of course, about myself.  I could work there for the rest of my life and still not learn everything I wanted to know.  Sadly, my body made this a terrible struggle.  I have been with them for nearly six years and during that time I have been able to work for a full year straight through ONCE.  The reality is that I was (perhaps am) stuck in a cycle.  I would put all of my energy into working, taking care of myself in all of my off hours, getting lots of rest, using all the usual tricks (ice, heat, creams, tens unit, etc).  Still, no matter what I did my body would start to deteriorate, my pain would increase, and eventually either the pain or a major antibiotic resistant infection would force me out on leave.  I would rest, do everything right, get better and go back to work, only to repeat the cycle.  And I’m a stubborn one, I fought like hell, ignored the pain, even ignored some major seizures, until my roommate caught me, literally and figuratively.  She called my parents, and thus, I have not been at work since January.

I was sooo busted.

I was sooo busted.

In addition to everything else my back has been a problem. I have pain in my back and then that awful nerve pain and weakness down the backs of my legs.  I can’t have an MRI because of the implant, so I have had CTs and x-rays.  I had a CT about a year and a half ago and it found a lot of degeneration and some other issues.  I’ve had SI and Facet injections that helped short term, then they took some x-rays this year and the findings were, well, three pages long and full of words that meant nothing to me.  We are still trying to sort out how this can be addressed.
backpainSo life has not turned out how I thought it would.  In fact, I don’t think this ever crossed my worried mind.  While I can’t work I have turned to one of my great loves–writing.  Ultimately I would like to write a book that will be helpful to someone with chronic illness and those who love them.  I have learned a lot over the last seven years, made some pretty disastrous mistakes, and gained a lot of insight.  Chronic is an very hard path to walk and society has a lot of misconceptions.  If I make just one person’s life a little better then I’ll be happy as a clam.  All the while I am looking to improve my writing and find the topics that resonate the most with other readers.  My writing will vacillate between life as I now know it and the life I once had.  The difference between the two is something I still haven’t reconciled and the understanding the dichotomy is intrinsic to understanding my struggle.

Somedays..yeah, it's like that. But I want to make it fewer for myself and others.

Somedays..yeah, it’s like that. But I want to make it fewer for myself and others.

Post by post I offer you an inside look of a different kind of “before and after” picture.  I hope that you will join me in both the laughter and the tears.

Us

Us

Thank you for reading!

readingkids

40 Responses to My Story, The Abridged Version

  1. Belinda says:

    Have you ever heard of RSD/CRPS????? It sounds like you may have it :>( I’m sorry to say….Look it up and see if it fits with what you have going on with you. I’ve had it for 23 years & it is a really nasty disease, but, it beats not knowing. The unknown is much worse….people look at you like you’re nuts, then you feel like you’re going nuts. Even after you know, people still look at us like we’re nuts “but you look so normal” !!???
    I really enjoyed reading this, you have a great sense of humor, I think a book is in your future ;>) I’m not sure how to follow you?? I’m Awful at FB!! If you know how to, let me know how….Did that make any sense at all??? I’m a Chronic Painer also, as if you couldn’t tell…….

    • leitis23 says:

      I’ll do some research on RSD/CRPS and find out. Thanks for the thought. If you want to follow when you are on my blog look at the top right hand side and there is a place to put in your email. Just enter your email and it will automatically send you my blog posts as I publish them.

    • Melissa Burger says:

      That’s what I was thinking. RSD. I was dxd 4 yrs ago. Along with Fibro, MS, and a whole slew of other Neuro Muscular Skeletal disorders.
      When the RSD developed….its been all down hill! And no helpful treatment. Please look into this. There is a test to dx it.
      Prayers your way.

  2. Ewan Cameron says:

    you have my sympathy and understanding . I had a had a motorcycle crash here in the UK in ’74 and have had chronic pain since. What put the cherry on the cake was a fall down stairs after tripping over a cat and possibly damaging a rib or two last week. At night I see every hour on the bedside alarm clock and getting out of the bed in the morning (not normally a problem) ius a major event. It’s very true what you said about the effects of long term pain and when I was younger before this happened that kinda thing just never occurred to me, as it won’t to millions. good luck with the treatment and lets pray that they find one of those “miraculous breakthroughs” that they get from time to time….we deserve one. Regards Ewan

    • leitis23 says:

      Thanks Ewan, you have my sympathy and understanding too. I actually used to ride a motorcycle too. I went off once, not at any speed, but my first thought was “My bike is gonna get hurt!” I wasn’t injured, but I was slightly disturbed by my priorities. That is part of why I’m writing all this is so that healthy people can understand and the chronically ill or in pain can put these things into words for those around them. I’ll keep my fingers crossed for the breakthough, but in the mean time keep looking for ways to cope.

  3. TD Stapes says:

    You’re sure not alone. My X-ray looks nearly identical to the one in your story. I have the same weakness, sciatica etc in my entire right leg due to nerve damage from repetitive injury. Laminectomies, FBSS, L5/S1 fusion and an SCS implant all within a year. My back is a twisted mass of scarred decay. One upon the other; 5 total…I think. THe only way anyone can tell I have issues is my use of a cane. I kissed dirt too many times. But to have what happened to you occur at such a young age really sucks. To put it bluntly. Like you and many others I am stubborn. I am at war with my condition and will not let it get the better of me. Hang tough.

  4. Nicole says:

    I read your words and see myself. I feel the same, have lived the same problems. I too had to leave a job I loved after I tried so hard to stay 😦

  5. Linda Wainwright says:

    Hi! I may be wrong, but it seems all your troubles started after the hernia repair. The fact that it was infected and rejecting the mesh then still causing pain afterwards could indicate you are allergic to whatever the mesh is made of. Please look up Melisa….it’s a very specific and accurate blood test that tells you whether your body is reacting to any particular metal (find out what the mesh is made up of). If you are allergic, that could very well explain all the other following symptoms, believe it or not, and you may even be allergic to the implanted stimulator. On the Melisa sight I’ve read of many people who had suffered multi-system pain and sickness only to find out they were allergic to whatever foreign medical device was implanted. Removing it gave them their full health back. I myself tested allergic to titanium and gold. I knew my symtoms began following brain surgery, and we discovered the plate that had been used to cover the hole in my head was titanium so I had it removed a couple of months ago. I’m pretty sure I’m starting to feel better. I couldn’t figure out the gold as I don’t even wear a gold ring. Then a few weeks ago a dental CT discovered a major infection around the roots of an old root-canaled tooth. When it was extracted, the surgeon informed me there was a gold post in the tooth. Melisa test was correct. Hope this helps.

    Linda

    • leitis23 says:

      Thanks Linda for the thought. I was allergic to the mesh, it was removed shortly after it was placed. That had a very clear infection, but when they removed the mesh they cut a nerve. It is entirely possible that I’m allergic to some of the materials in the implant. My body nearly pushed the wires out twice, so it is pretty likely I am. Unfortunately that stimulator is keeping the majority of my nerve pain at bay. I suffer all sorts of crazy things now, but the nerve pain before the stimulator was unbearable. I would not survive if they took it out. So I can do the test, but it would only be for knowledge. Which I can’t decide if it would be better worse to know while I’m helping one pain I’m creating so many others. Talk about a conflict! Still I appreciate the information and will look into it.

    • david lee says:

      How do you test for gold sensitivity ? Like muscle tes
      ting or blood ?

  6. ElizaBeth says:

    I’ve just skimmed through your blog. And my first thought is that you are describing life with fibromyalgia. Check out this site: fibromyalgiatreatment.com and the book “What Your Doctor May Not Tell You About Fibromyalgia,” by Dr. St. Amand. Life with chronic pain sucks, but there is hope.

    • david lee says:

      Dr Amand’s therapy was discredited with the guiefinescin in studies done in portland ore in the 70’s but his descriptions and writing is otherwise compassionate to the experience . I could write a book on failed medical heretics . I liked him but I still have a kilo of his meds that didn’t work for me either

  7. Tricia says:

    I have had 7 surgeries to repair inguinal hernias. The Chief of Surgery at our local hospital entrapped my genitofemoral nerve within the mesh he placed during the 2nd surgery, which caused permanent nerve damage, and it took me almost 2 years to find a surgeon who would correct his mistake. By then, my body was rejecting the fiberglass mesh, and it took another 4 surgeries to find a bio-mesh that would “hold’. I also have severe endometriosis. Between the 2 I have been living with chronic pain for the past 15 years. I love your post ‘6 Things you didn’t know about Chronic Pain’. Thank you so much for putting words to experiences I haven’t been able to express before now. I will share that post with all my friends & family!

  8. Ramona says:

    Oh my gosh, there are so many things on here I want to agree with, laugh about, cry over, and talk about that it would take six full pages if I went into it all. I thought I could handle any kind of pain since I’d had some sort of chronic pain since the age of 25. The nine months of awful back pain that I told my Ob/gyn I thought was my kidney (“was merely a bladder infection”) until I had the baby, saw another doctor, and had the kidney stone removed. The daily migraines after my tubal ligation “must be from stress and not the tubal because hormones have nothing to do with daily migraines”), as it turned out the tubal and bodily changes brought on allergies, and migraines because of the allergies. The pain from the Endometriosis was like a knife cutting through me from belly button to knees, but once I found the reason for the pain and had a Hysterectomy, allergies, migraines and abdominal pain all started to get better and so did life. That is, until I had the shoulder pain I’d been dealing with the previous six months come back with a diagnosis of lung cancer. So I had the chemo, radiation and surgery. However, the surgery not only cut my Sympathetic nerve so that I continually and profusely sweat on my left side (only), but I also developed a Neuroma at the surgical site of my upper right Lobectomy, along with the removal of parts of three ribs in to get clean margins. (A Neuroma is a bundle of nerves that came together after the surgery from all the cut tissue and bone and created this confused bundle of nerves that sends non stop pain signals through my back, shoulder, and chest). It took 10 days in the hospital to get some minor relief to the pain, and years of tweaking four different types of drugs to help alleviate a good portion of the pain. The Tens unit only aggravated my pain by feeling like a knife was being put into the middle of all the nerves with every pulse, so I couldn’t use it. And while I AM grateful to my surgeon and oncologists for getting me through the lung cancer, there are just days when you feel like you’ve had enough crap!! I’ve been in remission from the lung cancer for 10 years now, however, besides all the other issues you’ve brought up, I lost my pain management doctor that I loved and have a new doc that wants to “try” things my other doc said absolutely not to do, (and my husband and I agreed with him). I also now have to be drug tested four times a year, at random, so that I also have to feel like a drug dealer wannabe. This new doc looks at all of us like we will be considered criminals until proven otherwise. I’ve already taken 5 of their drug tests, but apparently I’m still under suspicion. At almost 58 years old, now I get treated like I may be doing something wrong by the doctor who is responsible for curbing my pain, by taking the meds that his previous partners prescribed the last 10 years, none of which are narcotics, except maybe the one pain patch I change every three days. I’m sick of egotistical, know it all (even when proven incorrect) doctors. (even one of my oncologists did not understand why I was having pain issues after my surgical site had healed!!!–READ THE PAPERWORK YOU MAKE US TAKE ALL THAT TIME TO FILL OUT!!) I’m sick of losing great doctors, sick of fighting with insurance companies, sick of jealous people who feel like I “look so good, there MUST be something I can do for a living”, and sick of those who don’t even TRY to understand what it’s like to lose your job, give up your ability to drive, say goodbye to doing things you love to do because it’s too painful or it’s too hot (if it’s over 65 degrees and I am moving I sweat until I dehydrate)!!! but other than that I’m doing well. But how could anyone not in our position even understand the ridiculousness of it all?? Thank God I do have the best family (mine and my husbands) that you could ever have. Without them, I would probably have lost my mind or given up long ago. Ha, ha. I really did NOT plan on taking up so much space. I generally keep this stuff to myself or my poor husband. But I wanted you guys to know too, you are not alone. Find those that know what you are going through and give them the chance to help just by letting you vent once a year or so!! If you can vent with a little humor thrown in, so much the better.

    • Barbara Wilson says:

      I have a nerve condtion, it feel like needles are sticking in my legs, I have told the doctor about it but he just say it nerves ending, but they hurt so bad.. I am afraid to push it because I don’t want to have any problem with my back, when I walk a long ways my back hurts so bad… I am scare of Doctor… I will deal with the pain as long as possible..don’t want no operation!!!!

  9. Dan Pinder says:

    (For me) chronic pain ended when I stopped eating inflammatory foods. The less I eat,, the better I feel. If I decide to eat wheat and sugar, the pain comes back. If I drink green juices and take fish oil and other anti-inflammatory foods then I am not in pain.
    Wow, after years of paying all those Doctors too. They were clueless!

  10. You are an excellent writer and I’m so happy I found your blog! I too am a Full time Chronic Painer – Fibro, D.I.S.H., IBS, Diabetes, Myofascial Pain, Trigger Points throughout my body, Chronic Pelvic Pain (mostly due to internal scar tissue and adhesions) and Chronic Fatigue.

    Have your CT scans ever indicated a type of arthritis called D.I.S.H.? It stands for Diffuse Idiopathic Skeletal Hyperostosis and results in bone spurs forming in your body where tendons attach to the bones. It can cause an effect on the spine that makes it look like candle wax has melted on the sides and can cause all sorts of issues. I had always been told I had osteoarthritis but received this proper diagnosis after a CT scan in ER for something else showed my sternum wasn’t right.

    I don’t know if I have any advise for you except to say “you are not alone” and I completely “get” what you’re going through. You can never know enough people who understand and get it, but that is one of my wishes for you! I will continue to follow your blog and respond when something calls out to me.

    Hugs,
    Pamela

  11. Deb Stano says:

    I am truly sorry that everyone here is a member of a club that none of us asked for, nor wanted to be a part of. But, here we are. I never expected my life to wind up the way it has. I recently went out of work on disability. I loved my job and miss my work “family” tremendously. I was diagnosed about 6 years ago with RA, Fibromyalgia, Sjogren’s, and chronic back pain due to something in my MRI that I don’t understand. I am 55 years old, and NEVER imagined that I wouldn’t be able to do anything that I wanted to. But, I can’t imagine being only 26 and facing this. Please don’t ever stop fighting. You need to control this, so that it doesn’t control you! The word “normal” is no longer a part of my vocabulary, because my normal is different every day, sometimes every hour! Keep your chin up, “Every day is an adventure!” Sometimes the adventure is new pain control, or it could be a walk thru the neighborhood park. Enjoy the simple things in life, and remember, there is a reason that you have been indoctrinated into this club, use your writing to help others.
    ~Deb

  12. finlaym1 says:

    Hi, I’m glad I found your blog. You write so well and should definitely write a book! I have a chronic pain condition but have to say your plight seems much worse. I really hope you are doing okay.

    • leitis23 says:

      Thanks, I survive, having both good and bad days just like everyone else. I’m glad that you are enjoying the blog. Chronic pain is miserable regardless of whether it is better or worse than someone else. We are all in the same boat with the defective paddles.

  13. Jan Groh says:

    Very well written, I’m so sorry for your experience. However, I can’t help noting you sounds a LOT like an undiagnosed zebra (EDS patient) in disguise to me as I read. Check out my blog to learn more. http://ohtwist.wordpress.com

    • leitis23 says:

      I checked out your blog, it is interesting. I will ask my doctor when I see him in a few days why he didn’t consider EDS. Thanks.

      • Jan Groh says:

        Glad to hear, EDS can explain so many mysterious maladies and so much chronic pain in so many. Be sure to let your doctor know they now think it runs as high as 2% of the population, far from rare, unlike what they were probably told in medical school which is still catching up. Good luck in any case.

  14. Tyro says:

    I can’t imagine working with issues like yours. I have chronic pain syndrome secondary to Ehlers-Danlos, and other complications like POTS and food allergies. I also live with severe depression and generalized anxiety, again with complications (agoraphobia, mostly). I’ve never been able to work for more than a few months at a time, and I had to drop out of college after I had a nervous breakdown. You have my respect and sympathy.

  15. rainbowgirl says:

    have just discovered your blog and am hooked. you can find me at http://www.strugglingtosurvive35.blogspot.co.uk ; our stories have many parallels. stay strong and keep fighting xxx

  16. Lono says:

    This is awesome. Not what we are going through, but a ‘support group’ of sorts. Me? Back pain, all kinds. had the surgeries, no fix. Worst thing about the back is it still seems largely a mystery how it all works. They seem to know less about the back than the brain. Muscle relaxers do little. Pain killers work, but are SO addictive I am off them now. Which sucks on many levels, but is also a psychological relief.

    almost every day is a doc appt of some kind, back related. I have a physical therapist, a masseuse, 2 holistic therapists (cranial sacral work, reiki energy, and muscle testing), a primary care physician, a crazy guy that literally works out of a closet, but does wonders, and my main back doc. I have been to and through every back and spine place in Denver.

    This, my friends, is why kurt cobain killed himself. It wasn’t heroin. He took the heroin to help with his forever un-diagnosed stomach pains… then got hooked. Last song he recorded was called ‘you know you’re right’ in which the last few bars of the song is him screaming ‘pain’ over and over again. He wasn’t being arty. He recorded that on the ground because he was in too much pain to get up.

    Don’t worry, this is not a suicide cry on any level. Life is too good. I would go back to painkillers if I had to. To me, though, this blog and the wonderful post ‘no one tells you about pain’ was wonderful. it helped give me insight into my own personality change over the years. I have been battling severe back pain for about 5 or 6 or 7 years now… getting worse all the time.

    I am going to look into some of those links above. thanks all, and good luck with the never ending battle! I should say I have a great and understanding employer, and health care, thank god. I am also thankful to the President for getting rid of the ‘pre-existing condition’ bs in insurance. If he hadn’t, I could never work again, as no one would want to hire and insure a guy with chronic back problems and surgeries. Three surgeries so far, no luck!

    stay strong, friends!

  17. ber says:

    I really like your blog, its written in a very accessible style. I have begun a blog, but having difficulty editing it….I like the way you have yours. Like you I have CP…your story is sad and so typical of how your life can be completely turned upside down in a short period of time. Acceptance is very difficult. I have done a Pain Management Program and it did help. Learning how to use mindfulness and meditation helps when nothing else will….I also had a SCS implanted but it was not a success so I had it removed a year later. That was traumatic. I also turned to writing….and did a few courses, recently I have lost interest due to levels of pain. I was in Art college when this started so eventually I gave it up along with the job, car etc….you know the score. I will be looking forward to reading your blog and sharing it. Hopefully I can get mine off the ground some time soon.

  18. Hi there! My name is Cameron Von St. James and I had a quick question for you & was wondering if you could please email me when you have a free moment. Thanks! I really hope to hear from you soon and appreciate you taking the time. ☺ cvonstjames AT gmail DOT com

  19. lifeinslowmotionblog says:

    I am appreciating looking through you blog, and that dichotomy of before and after is something I get so well. For me it is so difficult to reconcile my before and after lives and figure out who I am in the midst of that.

  20. George L Feriend Jr says:

    Love this…Thank you! My Chronic Pain (dark passenger) started after me first surgery to remove large lesion in my humoral head in right arm. I had this surgery three days after my 25th birthday. I am 52 years old in a month. Cancer survivor twice and 12 surgeries later just saving my arm. Dark Passenger is part of my life but not in control of my life.

    Thank you for writing about your Chronic Pain…It helps me see chronic pain from another perspective. Enjoyed very much!

    Sweet Feriend

  21. Jules says:

    Hey,

    Recently found your blog and have been really impressed with your writing. You have described the stages, feeling and emotions of dealing with chronic pain and illness better than just about anything I have read.

    Having your life fall apart and dreams and hopes dashed, is a soul destroying experience, especially when to other people look at you like you are not unwell.

    That is perhaps the cruelest thing about being in constant pain, no one can see what it is like on the inside, it is only the outside that matters to most people……………

  22. Jan Groh says:

    I also agree with the most recent comments pointing to CRPS/RSD also which, sadly, many in the Ehlers-Danlos Syndrome (EDS) community do seem to also “enjoy” alas, often secondary to any major surgery. (I think surgery triggers a sort of auto-immune “storm” in us lending to this.) I also notice /observe the following common experiences and conditions with EDS: weakened immune systems (variations of CVID), loads of environmental allergies/sensitivities, that is, not just hay fever (common too), but… our bodies seem to often reject foreign materials (metals, plastics – most are “nickel-sensitive”). I’ve seen too many horror stories of people getting shunts for hydrocephalus or intracranial hypERtension (we can also have hypOtension alternatively so being pedantic here) aka IH from fluid build up from Mast Cell Activation Disorders (also extremely common, explains the seeming “Multiple Chemical Sensitivity” in many). And, a large percentage if not most with Fibromyalgia turn out to actually have a form of EDS when they finally dig deep enough or worse: get bad enough to get a doctor’s proper attention. Why we win this lousy bad health lottery I do not know, but we do. Being hard charging and driven people just delays our final proper diagnoses also as we continue trying to deny how bad we are. This is likely from mast cell driven hyperadrenergia and resulting excess histamine (aka histadelia – google it). No wonder we struggle to fall and stay asleep, sigh. So many conditions… so little time. I hope you are getting some effective treatment and relief regardless. Hang in there! I talk about both MCAD and EDS on my educational site: http://ohtwist.com

  23. Jan Groh says:

    Some of the myriad comorbidities (additional issues/conditions) we find very common in the Ehlers-Danlos Syndrome community that can explain much of your experience (including CRPS/RSD alas, hugs to all who have it): http://ohtwist.com/about-eds/comorbidities/

  24. I rather quickly skimmed through the previous responses. I saw many good suggestions for possibilities of things to look into. Like most of these people, I have my own chronic condition that resonates with much of what you said. I’ve been to approximately 47 (I lost count somewhere around 43) doctors, each “knowing” what was wrong with me until they were proven wrong, then I was sent off to find the next doctor. I bankrupted myself trying almost every treatment, drug, and procedure offered. Nothing worked for long. Finally I started searching on my own, and found my main answer. For me, it was Ehlers-Danlos Syndrome, like Jan up there mentioned. I suggest, if you haven’t started already, researching on your own. In med school, doctors have it drilled into them that the rare things they do learn about are just that, rare. They are trained, as the saying goes, “When you hear hoofbeats, look for horses, not zebras.” For most of them,that will hold true their entire careers. When we zebras come along (or pegasi, or unicorns, or whatever) they tend to get flustered. Plus the way that most of them end up practicing (large numbers of patients to keep up with insurance demands) doesn’t afford them the time to go figure out which kind of zebra or unicorn or pegasus we are. So we get shuffled around without answers. Most zebras find their own answers. It took me something like 4 years to find my EDS. I had it confirmed by 4 different doctors in 3 different specialties. So that one’s a definite. To add to the issues, in my own experience, speaking with others with various chronic conditions, it seems common for a lot of us to have multiple issues. So if you’re searching on your own, you may not find one thing to cover every symptom. Find something that strikes you as right, get it confirmed, then look for what could cover some other symptoms. To add to the trickiness of it, you could have several overlapping conditions that share symptoms, as Jan mentioned with EDS and CRPS. It’s a daunting task, but it may be the only way to find answers. I wish you well, and hope help is found for you. Good luck!

  25. Wendy says:

    Though the author was treated for her inuingal hernia, many of her additional symptoms, including chronic pain, seizures, and finding MS-like plaques on her brain are symptoms of Chronic Lyme Disease.

  26. ScorpionGlow says:

    I just happened upon your blog and I am blown away by it. While our stories are not similar, I relate to a lot of what you talked about. It certainly IS a battle. That’s what people don’t seem to understand and if they do, I have found that their understanding is temporary, at best.

    Wishing you well. I will keep reading. Take care of yourself.

  27. Pamela Bomersback says:

    We have so many similarities it is uncanny. I too got sick in 2003 when I lost vision in my right eye from optic neuritis which led to a brain scan which showed multiple lesions leading them to suspect MS. They attempted and failed a spinal tap and then never followed through with treatment. 13 years later they finally got the spinal tap done which confirms they were right back then and it is MS. Now I have dozens of lesions. In the meantime though I developed another auto-immune disease called Polyarteritis Nadosa (PAN). With this I too struggled to keep my job as an Emergency Nurse although I had so much swelling in my legs and 33 ulcerated and infected lesions on my legs I couldn’t cope. Finally when they put me on high dose steroids and chemotherapy I could no longer work. What a loss. It was at this time also my husband decided he “wasn’t having a relationship with MS” and his abuse escalated. I asked him to leave – I could no longer tolerate the abuse. Loss upon loss. I became an unemployed single mother of 3 small children (6,3, 10 months) struggling with multiple chronic illnesses and chronic pain.

    I too had pushed myself when I was young and had achieved my BN st university and was taking my MSC by the age of 21. I worked night and day and thrived on being ambitious and driven. I didn’t feel overworked just energized by chasing my dreams. I often wonder if pushing myself so hard was somehow responsible for the onslaught on my illnesses. ?? I still wonder.

    Long story short I am still struggling, but not giving up. I believe I have dysautonomia too because my body temperature does not regulate and my pulse and blood pressure fluctuate wildly. My pulse often sits between 28-40 – too low to perfume of fans I would think. On top of that I believe I have adrenal insufficiency because my cortisol levels are very low. The doctors needed an additional test to confirm and because I literally have no veins to inject they couldn’t complete it and therefore I am not being treated. I now have a Bard power port, but nobody at the Endocrinology clinic is certified to inject the medication needed for this test. Doing the test would mean admitting me to hospital and they are not willing to do that. So…. I am so fatigued I can’t shower and have an appointment in the same day. Keeping up with 3 teenagers is almost impossible. Doctors are not committed to find answers. This endocrinology “student” – by way of explanation to me said I’m not doing the test because you would be way more sick if you had this and you just don’t look that sick to me. I explained to her my fatigue and my blood pressure being really low 80/33 and she just shrugged. She said you would have been hospitalized if it was that low. I avoid the hospital at all costs because with no veins they poke you 40 times and drill a line into your tibia if they cant insert a central line. But to no avail. They just aren’t educated enough and just simply don’t care about getting the tough questions answered.

    Anyway, your story really resonated with me because we do have so many similarities. I too enjoy travelling very much and have always dreamed of writing a book one day. Maybe now is that time since my attempt to return to my nursing career has once again been thwarted by the plan for more chemotherapy right away after I did a full time 2 year Nursing Refresher course (mostly from my bed – it was distance learning) to attempt a return to work. I can’t accept the loss of my career. I still crazily believe somehow I can get back to the other side of the bed!! Anyways I would love to correspond with you or follow you on IG if you have an account. I would make an amazing travelling partner too!! Bless you and keep fighting. We are not alone!! These diseases will not define me and cannot confine me!!
    My IG mom23sweeties or email purple7@telus.net

    Pamela

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