Wow Faer, that is quite a road you have been down. I for one am glad to see you back here at wondercafe and, with all you have been through the last few months, in good spirits.

Faerenach, you have my empathy!  Luckily, none of my diseases are super serious, but I still know what it's like to feel unwell and I have been on prednisone before.  It sounds like you have a pretty positive attitude, which helps.  I know someone who has something similar to ITP (maybe that is what she has, I'm not 100% sure) and it's been a rough year with her trying to teach (and be around kids), flareups, and infections, including shingles.

With all those drugs, do your best to avoid infections!  I'm virtually sending you some of my hand sanitizer stash (keep one in your purse, one in your backpack, one at work, etc!).

WOW Faerenach,

I could tell by your writing that you have strength, but that is going a bit too far; hmm, I wonder if you could capitalize on that and use your immune system against others, like when you have to get that loan at that bank, just POWER ACTIVATE! and the loan officer gets a histamine reaction every time she says something negative and turn it off when she does something positive :3

And don't you just love the medical terminology?  Idiopathic?  "We don't know what it is, but we know what it isn't."

So how've you been with all of this 'new' stuff you're dealing with?

Wow Faerenach - that's a lot!

I am keeping you in my thoughts and prayers.

I agree with the others and say Wow Faerenach! When your system settles down there are different things you can do to help your body be healthy. Stress is a major trigger for the system to go wonky. There is an excellent book by Dr. Gabor Maté called "When the Body Says No: The Hidden Cost of Stress". It is very good and explains how stress affects our bodies and immune system. If you decide to read it, know that he is not blaming the victim. He does offer some suggestions on the mind/body/spirit front that might help.

May you find some balance and health!

Faerenach, what a difficult time for you - especially that nasty bone marrow aspiration and biopsy.

You're still young - so it must take a lot of adjusting.

I hope things settle down for you, and you stay strong and optimistic.

Thank you all for the support!  I should add that as support goes, I've been uberblessed by my friends, my family, my work, and my faithkin (that's you guys too!). 

Fun little story:  I received an absolutely exquisite prayer shawl - a delicate heather-mauve-coloured creation - from my church's dedicated knitting team the week that I was supposed to have a non-emergency surgery (ovarian cyst removal).  The operation ended up being called off the day before it was scheduled, due to my white blood count still being too low.  I had been hyping myself up for the procedure and the recovery for a while, and couldn't help feel incredibly disappointed and angry with the last-minute cancellation.  Sorry - deferral.  It's been pushed well into autumn, providing my health clears up.  Two weeks after disappointment, my platelet count fell through the floor (right at the end of what I call 'the scheduled 2-week recovery time off that never was'); I found myself in the emerg and was actually admitted for a couple nights.  I asked my husband to bring in my shawl, which I wrapped myself in immediately.  As I sat, waiting for updates on how I was doing, I came to the marvelous realization of how much more that shawl was needed now.  The beautiful lesson of Ecclesiastes 3 (A time for everything) only becomes clear AFTER the trying times have passed.  What do they say?  Hindsight is 20/20?

And for the record, I LOVE the medical terminology.  Try saying "idiopathic thrombocytopenia purpura" three times fast.  There's a reason that acronyms get used.

Thank you all for the support!  I will confess, I started this thread with the hopes that others might share their own stories about Autoimmune disorders and such as well.  If you've got 'em, please add them!

I'll leave you hanging for a little while, I'm busy this morning!  I have taken an immunology course just because I found it interesting, it's a bit amazing that everyone doesn't have an autoimmune diseases when you see everything involved!

i have multiple sclerosis, however i have never had the medical workup that you have had.  all i needed was an MRI to confirm the diagnosis, and other than being loud and a little claustrophobic there isn't much discomfort at all... hardly even worth mentioning compared to a bone marrow biopsy, thats for sure!!!  you sound like you've just lived through an episode of 'house'!!!

the most trying times for me are when i loose my vision and become so weak that i can't walk.  the vision part scares me the most, i think... i always worry that there are so many things that i want to SEE.  i want to see my kids grow up, i want to see the great wall of china, i want to see my husband on the shore of greece. 

on the bright side, i have been in a drug study for the past number of years for an oral medication that appears to stop relapsing.  i went from having 2 heavy relapses every year to having one heavy relapse in 6 years with a minor one every autumn. 

not to mention that there are a lot of interesting medical breakthroughs that have really made an impact in how the medical community LOOKS at autoimmune disorders, such as the zamboni 'liberation treatment'. 

Oh Faerenach, I am so sorry to know this tough journey you have been travelling. I'm sending lots of positive energy and caring thoughts your way. Good to have you back here -- please keep us posted as you are able.

Hopefully the doctors weren't quite as crazy as him!

I have this image of you entering the arenas of Winnipeg, taking the Zambonis and driving them through the streets, until eventually you hit the edge of town and set them free to roam the prairies for the rest of their days! LOL!

Faeranach,

My thoughts are with you and yours. Hug your prayer shawl tightly. You may have not have felt you needed it with a cyst removal, you needed it when the delay came... and it was there. The spirit at work.

The journey of discovery was the hardest for me, the unknown, and all the tests to finally get to a diagnosis. My advice for anyone in the uncertain times is to make sure you get other opinions and have a good healthcare advocate, medicine often treats symptoms and the dots do not get connected without someone advocating for it.

Keep us up to date.

Faerenach - I've missed you.  I'm sorry to hear what you have been going through.  Believe me when I tell you 'you are not alone'.

This phrase is part of the United Church creed, stating that we are not alone but part of God's world, surrounded by God's love.   But it also means that others have walked the path before you, and walk it with you now.  We don't walk in your shoes.  Each person presents with different symptoms and reacts differently to treatment.

My crohns disease is an autoimmune disease.   I have spent weeks and months in hospital recovering from flare-ups.  I've had blood transfusions, interveneous feedings when I was too sick to manage even liquids.  I've been treated with steriods.  I've lost weight until I looked like a walking skeleton, and been so weak that if I bend down, I might fall down.  

Once when I was trying to work my way through a flare-up besides the usual symptoms of crohns (intestinal upsets, bleeding from the bowel, dehydration), I had a skin rash, swollen and extremely painful toe joints that made walking difficult, a redness and pain in my eyes, bad nervous and depression that made me think I was going crazy.   I was about to lose my job when the assistant manager realized how sick I was (I was still hoping it would get better on its own).   I ended up in hospital under the care of several specialists (eyes, skin, mind, as well as internal medicine).  They agreed that all my symptoms were related to my crohns.  Eventually I got past that flare up.  The next big one, six months or a year later, I had surgery to remove my large bowel.  That was 20 years ago.  I've been comparatively well ever since.   Instead of skin and bones, overweight is one of my problems.  

I tell you this to let you know that there is hope.  You will recover.  You will probably have this problem all you life, but modern medicine will find treatments that work for you, and you will learn to live with it. 

((((((((Faerenach)))))))))      Hugs from Seeler.

ROTFLMAO!!

that is the best laugh i've had in months!!!

thank you so much for that!!!

Oh my, that is such an AWSOME IMAGE :3  I can imagine it being quite a Canadian movie (anyone ever seen the movie Men With Brooms?)  with Venus Terzo, Sarah Strange, Nicholas Campbell & Graham Greene :3

oh dear Faer - so sorry to hear about your health challenges.   Those newlywed times are not the ones usually imbued with such medical adventures or shall I say misadventures?  

As one who knits prayer shawls, it's lovely to hear how comforting yours has been for you - it reminds me to finish up the one I'm working on now.

My thoughts and prayers are with you and your family. 

(BTW - love that 'faithkin' word!)

man, can you imagine the crop damage a group of wild zambonis would create?? 

What exactly does a wild zamboni feed on anyways???

I think the movie would have to have a theme song written by The Arrogant Worms.

Hi Faerenach - so sorry to learn that you are dealing with some serious health issues.

That's a difficult and challenging journey for you.  I sincerely hope things improve soon.

I would echo someone's else's advice in that keeping your immune system strong is important.  If your system will tolerate it, increase doses of Vit. C, and Vit. D.

Sending good wishes and positive energy for better health and better days ahead.

LOL on the zamboni images! I do think this is a good theme for The Arrogant Worms!

Greetings Faerenach,

. . . wow - that's an awful lot of diagnosis and information to digest at one sitting.  I don't know much about any of the conditions you have, so I don't know how serious they are to you today, and in the days ahead.  I have had experience with my daughter in having an undiagnosed neurological condition for 25 years, so my guess is that there must be some semblance of relief in having a name, a label, and knowing what you are dealing with - now a plan of attack, treatment, and help can be made.

I hope that you have many who are present in your life to support, encourage, and help you in necessary ways in the days ahead as you look at treatment and coping with your illnesses.  I hope that you and your hubby are able to comfort, support, communicate, and go through all the "whatevers" there might be - and that through it all your relationship with one another will grow and be strong.

It's good to know that despite all you are dealing with that you are still in a place of trusting God.  I believe God loves you and that God is with you, and I hope that God's love and presence sustains, nurtures, encourages, and empowers you, your hubby, and all your loved ones.  Seeler draws to mind the New Creed . . . and the words "we are not alone".  I respond with the words "Thanks be to God."

May you be filled with an abundance of hope, peace, joy, and love . . .

Hi Faerenach,

I'm heartened to hear you have a grip on things now.  I regret the necessity of such experiences.  Glad you are still kicking.

Canadian Blood Services recently asked me to switch from whole blood donation to plateletpheresis.  I have made the switch and while it takes quite a bit longer than wholeblood donation I know it is often more helpful.

Not that I needed another face as motivation.

I commend your spirit and pray that your journey is not too taxing or arduous.

Grace and peace to you.

John 

Faerenach.....I watched a bit of the sick kids pledge show yesterday, and the amazing things that are now occurring....recognizing how much hurt and worry that goes into each illness.  

A young lad in our church has recently been diagnosed with crhon's after a few years of concern and worry and of course terrible pain and illness.   The treatments, though not without setback, have made him into a normal teenager again...though, with an awareness of how close death can come knocking at your door.

I'm thinking of you...thankful for the spirit that you show and also recognizing the strain this can be on a relationship, like beloved - i hope that it strengthens yours.  i love the image of the prayer shawl.

do take care of yourself...know that your wc friends are thinking and praying for you.

Faerenach, I'm back as promised!

I'm sure you've come across threads where I've mentioned problems with asthma and allergies.  It's not a clear-cut autoimmune disorder, but still related to the immune system.  Along with the allergies I also have nasal polyps (which I didn't get diagnosed until high school, I probably had problems with them as a preschooler) and eczema.  The allergies made me quite sick, and I think I was tested for lupus at some point, as well as arthritis, but luckily I don't have these diseases!

After having health issues after the flu vaccine I was initially told it was probably Guillian Barre Syndrome where the myelin of the peripheral nerves is attacked.  Later I was tested for other autoimmune disorders including MS.  While still trying to figure out what was going on, I had a flare-up of a skin condition that had gone on undiagnosed for years, so I finally saw a dermatologist and it turns out I have psoriasis.  Getting the psoriasis diagnosis worried me because having an autoimmune disorder just worried me more about whether the nerve symptoms I was having was related to MS or some other chronic condition.  I never did get a full diagnosis, but for me it was a case of no diagnosis being good news, it should just keep getting better.

There was a minor concern about another disease, pernicious anemia.  This occurs when your immune system attacks intrinsic factor which is required to absorb vitamin B12.  My doctor wasn't too worried, because my B12 levels were only a bit low.  Taking pills was enough to get my levels up high enough, so for now I don't have to worry about regular B12 shots for now, but I'll have to keep an eye on it because as you get older you tend to have more problems absorbing B12.

To summarize my rambling post, I only have one diagnosed true autoimmune disorder, psoriasis, but I do have other issues with my immune system and I know what it's like to be tested and waiting for a diagnosis!

In the olden days ( the 90s) detoxifying was quite popular as a method of dealing with autoimmune and total allergy responses.  Things like sleeping outside in a tent in the winter

Eating only organic and prescribed only to your condition ( in your case the celiac will rule, I guess)

The thing is that people do get better after a few years, if they pay attention to diet, meds and stress levels.  I didn't realize this but it is true.

However, believe it or not, some people ( I am not saying this is you) have also, apparently, hung on to the description of the disease even when no longer suffering symptoms - or haven't for several years.  It is very hard ( I can vouch for this, personally) to understand that you have actually managed to heal yourself of a disease which has radically changed everything about you forever, regardless of whether or not you still carry the thing.  But, there comes a day when everything just says "over".  I am not suggesting that is is what will happen, but that it has happened and people do get well.

jlin, I have to disagree.  Most people do not get better after a few years if they have an autoimmune disease.  People might learn to control their condition with medications, diet and lifestyle changes but it's fairly rare that a true chronic autoimmune disorder will be 'over'.

Sleeping outside in a tent in winter could be dangerous to me.  Cold air is a trigger for my asthma and can also aggravate my nasal polyps leading to respiratory infections.

What Jiln may be thinking of is the anaphylctic reaction to food or other items.  This is an allergic reaction.   Recent studies have indicated that through controlled exposure the individuals bodies can be taught to accept the proteins without attacking.  This is a huge win for those who face food allergies.

Well you are all right.  I am giving some confused information.

First, I agree with Chemgal that "cure" is not likely but that "controlled" looks so much like cure so as to may as well be one.

Second, in the case of 'total allergy" , the sleeping in a tent remedy was a way out of house dust which is blown radically around with central heating and any other form of winter heat.  I know it sounds weird but it did worked for some.  We can handle any cold if we have warm sleeping bags etc.  It's actually kind of nice.

the total allergy thing was a form of environmental allergy that started to arise during the 90s.  As I live a much more contained lifestyle these days, I don't run into the people ( you can see them wearing gas masks or other accoutriment) as I once used to. 

I do know what you mean by anaphylactic reactions to foods, Pinga.  My mom is deathly allergic to shellfish and my mominlaw is deathly allergic to peanuts.  My mom is also a wheezer ( with accompanying depressed-like moods we aren't allowed to call depressions)

I though that the protein tolerance wasn't so much a progression of detoxification, though,( if I understand what you are talking about, ) but the progressive tolerance given through weekly shots or a steady introduction of some proteins at an early age; such as early exposure to cats and dogs for kids.

Oh dear, off the track of autoimmune, but I sure that there is some crossover. 

Thank you all for the stories - it's a good reminder that I am not the only one struggling with chronic issues.

From what I have heard over and over with other sufferers, immune diseases are especially hard on people's stress levels - mostly because of the chronic, not-physically-obvious nature of their disease.  jlin, I think there are things in common with allergies and autoimmune disorders/diseases, but it's as chemgal said.  You can go into remission and have moments in time without symptom or situation, but the true cause of things doesn't ever really go away.

I'm happy to report that for those of you who are wondering/sending prayers, my newly-upgraded-to-married relationship is very stable and healthy, despite the stress being put on it from 'all this'.  We were together for nearly 7 years before we were married, and we'd survived a long-distance relationship for the first 3 years... something bound to make or break us.  Make us it did, and there have been relatively few moments in our being together that we have ever lost faith in each other.  The health stuff is relatively easy to deal with in comparison!

sighsnootles - Thanks for sharing about the MS.  I don't think I ever realised it was an AI until I started doing my research.  I'm always reminded of Jacqueline Du Pre (famous cellist) when I think of the fight that comes with MS, so I'm glad you've found a 'bright side'.  Learning to deal with what ails us is a true test of spirit, don't you think?

gecko46 - I've actually been taking vitamins regularly before this even started, and my tests have shown that I'm not really deficient in anything.  But I agree - vitamins are key!  Everyone take their Flintstones!

(Also, the zamboni tangent was hilarious - thanks for making me laugh everyone!)

seeler, sg, myst, gecko46, northwind, revjohn, carolla, everyone... thank you all for your kind words.  I still believe that the WonderCafe is the perfect example that genuine community can exist online.

Jlin, thanks for the explanation!  I tend to get suspicious quickly when someone talks about a condition just disappearing.  There is a relationship between autoimmune problems and allergies, so it's not too off track.  It's your immune system triggering a response when it shouldn't in both cases.

Faerenach, I'm glad to hear things are going well as a newlywed despite the challanges.  Hopefully some of the bliss will affect your health in a positive way!  You deserve a chance to just be happy without having to constantly run to the hospital!

I'm glad you enjoyed that little tangent Faerenach! I only started it because you seem to have such a great sense of humour - so I thought you would appreciate it.

i know i did!!

Faerenach I am sorry to hear about the auto immune disease.  I pray that you will be able to find success in controlling this disease.  I think jlin is right in suggesting that one is able to make the proper adaptations and thereby to effect a "cure" (in the sense that you become a person who is no longer afflicted) because you have imperceptibly become a different (some might say better, more thoughtful, fully conscious, insightful and more moderate) person.  Notwithstanding all of that (being a matter of details after all), though, Faerenach, you can, essentially, still be you ... 

I do know what you meant to say qwerty, but I couldn't help being amused by this line in particular.  Steroids may make me feel physically better, but the "more thoughtful, fully conscious, insightful and more moderate" parts are near-perfect opposites of the side effects the prednisone has caused!  (And just ask those around me - imperceptible it is not.)

Ah well, at least I can laugh at it and myself.

Okay! So its going to be the snarly, tearful Faerenach who goes out into the world trying to be moderate and unstressed.  Still!  You can do it! 

AH Prednisone. I hate that one. Swelled me up like a balloon, was totally hyperactive all the time, couldn't concentrate on anything and was hungry ALL THE TIME.

I wanted to wish you luck in your fight. I've been dealing with cutaneous T-cell lymphoma for years now, and the battle rages on but I will beat this. My husband always tells me not to lose hope - we're young, and we can't imagine what advances they'll come up with in our lifetime. So hang in there! There's no such thing as false hope.

And don't "worry" about it too much or it will consume you. You trust your doctor, let him worry about it. Just remember that you are not your illness, and it does not rule your life. It only modifies the way you do things and maybe with time it could teach you many wonderful things (taking the positive out of a bad situation).

I also wanted to suggest to you a book, if you're interested:

Foods That Fight Cancer by Dr Richard Béliveau - he's a pioneer in the study of the impact diet can have on the body and the pro and anti-cancer properties of different foods. He's discovered some amazing immune-system boosting and cancer-fighting properties in every day foods. I know it's not much in the face of chemotherapy, drugs and all those damn tests, but it could give you some sense of control which can be very empowering, and since it's about diet, you have nothing to lose by eating a few extra raspberries and drinking green tea right?

Again, good luck. xo

Hey Faerenach.  I'm sorry to hear of your health issues.  My father has myasthenia gravis which is another autoimmune disease.  It can be very frustrating and I hope that you are well supported and keep your positive attitude. (((Faerenach)))...cms

I'll be praying for you Fearenach. I have Chron's so feel free to write me and I'll help in any way I can. Maybe something I've been through will be helpful for you. I wish I had known in advance and I could have talked to you about colonoscopies. I've had four and will now be doing that every three years. Take care of yourself. In case you haven't discovered it yet, steroids will increase your appetite (I didn't fight it) and after a while you will get very irritable and testy, i.e. 'roid rage. Yes, it's real, even from medicinal steroids.

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