Just popping in

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Just popping in

Post  marion on Tue 21 Feb 2012, 10:16 pm

Hi Everyone,

It's been a while. Life goes on. Some answers - not many. Have tried to write a few times lately and all I write sounds very negative so I end up deleting the post. So trying to be positive today. Failing miserably. I am still working which is hard. Luckily my children are wonderful (a positive) but still no sign of grandchildren.

Migraines are rare now days, but persistant headache has replaced it. I am still searching for answers - still.

See I am getting negative again! Anyway hope you are all getting some time off from all the nonsense we go through. I do still pop in to see how you are going and it is a comfort to see all the support you give.


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Re: Just popping in

Post  Cluelesskitty on Wed 22 Feb 2012, 1:49 am

Marion, you do not sound negative at all - you sound just right for this very forum!!!!

This is what happens to all of us here - we are suffering, living in eternal pain if not of this kind then the other,
usually all kinds of pain,
searching for answers, for relief,

and come in here for one simple reason - to unload the c*ap that bothers us beyond our limit!

This is what we are here, Fabulous Marion sister, for - to listen to what ails you and to offer our support!
Please, do not try and sound upbeat when it is the furthest from the truth.

I suggest better - start the rant thread -
and let the other Fabulous sisters and brothers join in the spiritual cleanse that only the spectacular mutual
whine and moan can bring!
Each of us can bring some whine and cheese to the table!
cheers

So, dear Marion,
I know what it means when your episodic migraine turns into something daily and chronic.
Hard to say what's worse, really, whether to have a good days in between but otherwise sporadic attacks so horrific
that the very memory of these bring on an emotional trauma,
or - less intense constant HA but.. well, the key word here - constant...

I stopped thinking about my M and what may possibly cause it years ago.
In other words, I resigned myself to having them, and copy by taking abortive meds along with Topamax daily.
I only worry how long can I keep up with that since more and more often i feel this pain in me right side, hmmm.
Not good, eh.
Well, we all do our best. Since over the 25 years of my M history no dr had better idea how to copy with my pain,
I will take what I can - and works- to be able to function.

With the help of other Fab members I have complied this "library" of some health condition where migraine or headache
can be one of the symptoms,
I wonder if your drs ever bothered to check you for any, Marion?
http://migrainehelp.forumotion.net/t253-other-diseases-connected-with-migraine


last but not least - hurray for your sweet kids! who knows, maybe the '12th is finally a year of the Grandma Marion!
Let's hope so !! :]


Risa





Last edited by Cluelesskitty on Wed 22 Feb 2012, 5:12 pm; edited 1 time in total

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Re: Just popping in

Post  30yrsofheadache on Wed 22 Feb 2012, 5:42 am

I agree with Risa. Dont hold it in, let it out. We can take it!!!!!!!!!!!!!!!!! Sometimes things just arent going well. We like to hear about that, too. That's why we are here-to help each other.
Hugs,
Cindy

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Re: Just popping in

Post  marion on Wed 22 Feb 2012, 5:51 pm

Thanks girls - at this time it is nice to have some kind words. So yes, I would love to vent so here goes.

Yes, I do fit on your list Risa in a couple of places - drats, drats and triple drats.

My neck does not improve and the latest xrays show degeneration happening far far too quickly.

The radiologist wouldn't commit totally, said if the images are "correct", nerves are being compromised coming out of four vertebrea. I am not going to follow up yet with mri's, that aspect can wait for the future. Basically I don't need a crystal ball that if the degeneration continues its surgery. Hmm

At this time I am trying to follow up on the Hashimotos and the whole unexplainable, undiagnosiable, autoimmune nightmare that is the bain of so many people around the world these days.

Pain I can deal with. The headaches I can deal with. The pain LH side, (COSTOCONDRITIS RISA - HAVE YOU GONE INTO THIS?) etc etc. Fine, I can do.

But the exhaustion, oh my Lord!!!

My husband and I are business partners, and on that note I will leave you to guess the gaps.

It's those gaps that are getting very, very hard to deal with.

Back to the costocondritis - it is one of those marmy, parmy dx's. Torn tissue away from the ribs. I have my doubts. Mine has been there for 10-12 years and I think it is inflamation rather than tear damage. Probably to do with one of those nasty autoimmune issues such as rheumatoid arthritis. If nsaid's aren't working you probably have deeper issues and nsaids can in make the situation worse rather than better.

Pay attention to "flares". If symptoms like the side pain come and go with no real reason, watch for other symptoms arriving at the same time. Stupid things, rashes, tendonitis somewhere else - if you end up feeling that there is a very vague pattern you are circling around autoimmune. The more dramatic of these flares being Lupus. I don't think that the average joe has to meet the very rigid critiera of say Lupus, to be caught up in the autoimmune nightmare. It can be much less severe than multiple organ involvement, but even with milder symptoms, make life hell.

There I have had my whinge. Thanks I needed that.



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Re: Just popping in

Post  Paradox on Wed 22 Feb 2012, 6:50 pm

Go Marion! cheers This is why we're here. Because we understand. I told hubby the other day that if this is what 50 feels like I have no desire to hit 70. One stinkin thing after another. The head, the back, the bursitis because of the back, the pain in my most sensitive woman area for weeks because the nerve swelling from my back has put pressure and inflamed other nerves. My rectum cramping for up to 45 minutes at a time. After several weeks of it I was in the dark place where I no longer cared if I woke up in the morning, in fact wished I wouldn't (my neuro gave me some injections in my tailbone and other areas "down there" and I'm feeling much better now).

It never ends. Yet I don't want to complain to folks who don't get it. I remember one coworker typing and chatting away about what a TERRIBLE migraine she had. I had just gotten done hugging the porcelain throne with mine. No typing for me. Wink. (different topic but same analogy. My son is moderately mentally handicapped. Will never live independently, will never drive, will never be able to count money, etc. One day when he was younger it was too much and I started crying in public. My sister-in-law hugged me and cried with me telling me that she understood exactly what I was going through, after all her son is dyslexic. Wow. Yeah, EXACTLY what I'm going through.......geez Louise).

Many of us see it affecting work though it has to be tougher when your hubby is your partner. I feel bad enough with how much my hubby has to contribute at home.

Don't feel bad about complaining, ever...Please? It feels much better being able to vent.

Hugs. It is good to hear from you.

Charlotte ( Joan from Rondas)
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Re: Just popping in

Post  marion on Wed 22 Feb 2012, 9:06 pm

"if this is what 50 feels like I have no desire to hit 70"

Oh Paradox don't I know it.

Guess what, for something completely different I am off to the doctors!!

Will post more often, you are a lovely bunch of people.

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Re: Just popping in

Post  Cluelesskitty on Wed 22 Feb 2012, 10:27 pm

Add me to the Whine and Cheese (and moan) at The Fabulous Table, please!

Just yesterday I realised that despite of having a bunch of close friends, despite being extremely lucky of having
a childhood girlfriend of over 50 years here with me (since I am an immigrant) - I feel lonely.

It's the disease and pain that isolate.

Other people, healthy and healthier simply don't get it.

I met one of my friends last weekend who had a brain tumor (and knock on wood, so far so good) and confessed to her
how lately my internal clock is so whacked out I go to bed at 7am and got up at 2:30pm.
Her response? "Me, I would hate to waste beautiful day".

Well I don't care anymore, I don't know what the hell is wrong with me to begin with, I am so cold I DON'T WANT TO
go outside anymore anyway, no matter how beautiful day is out there,
and I can't help it if I can't fall asleep before 7am and wake up before at least 2pm no matter how hard I try.
I talked to my family about maybe I'll try the recommended moving the time every two hrs forward until I get to the normal
night/day sleeping hrs, but they are not too sold on that, hmm
since it involves me sleeping during the day and getting up at night for a few days at one point. Oh well.

It is not easy to be me, to be US.

I figure also yes, getting on in years doesn't help any, uh-ha, nope.
I always thought how once I hit menopause the migraines will get better, things will finally get better in general but oops -no,
they doesn't because the rest of my body is falling apart, too, oh joy.

So, like you Charlotte, I am dreading being older because if I barely manage taking care of myself now,
what will be it like in 2, 5, 10 years from now? (shudder)

And Marion, I looked up Costochondritis, and thank you for suggesting this to me, I think a little bit I may indeed have it
as my lower last three ribs are very tender to the touch,
but mostly my symptoms fit a gut problems as for me it's more like I have this stabbing, bloating pain from too much medications.
My pain also flares up after eating something greasy, and if have ummm. well, constipation.

There is a bit of good news in this ocean of misery, though - after I started taking estrogen and progesterone
my hot flashes are minimal (almost none),
I sleep way better even regardless of whacked up sleep pattern,
and my dr gave in and let me try Synthroid for a while - I think close to two months if not longer - sorry my memory is really bad! and at least this excluded thyroid problems and for that I am extremely grateful for I am like doubtful Thomas -
- if I don't touch it myself, I will not have a peace, ever..

The hormones I take now (e+p) also made me realize I am not as cold and sensitive to the cold as before.
This make me wonder if my problems are endocrinological in nature, as I also dug up some ancient medical family history
from my late 20/ early 30ties where is written I was suspected for pituitary/hypothalamus problems
but not bad enough to be treated for - hmmm.
That would explain a number of problems I had in my youth, miscarriage including maybe, migraine too, perhaps.
Nobody bothered with MRI back then, well, I don't know if it was available in the 80ties anyway.

whew, feel better...

Thanks Marion. The wallow so helped. Smile

Risa






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Re: Just popping in

Post  marion on Fri 24 Feb 2012, 7:29 pm

Well Risa from what you just wrote above you may like to hear what happened to me on Thursday at the doctors. I GOT AN ANSWER!!!!!!!!!

I have a name, I have a reason. The phrase that keeps leaping into my head is "after all these years".

Ok so here's how I got there. Give it a go.

Look very closely at your family history. Spot the relative with the really unusual illness.

Mine is my brother's. He has Addisons.

Look up the gene that affects the disease. Addisons is 4(CTLA-4).

In the discription of the gene it will give a list of what it affects eg 4(ctla-4) list includes:

Asthma, addisons, myasthenia gravis, sjorgens, ulcerative colitis, graves, hashimotos, sle (lupus), systemic sclerosis, celiacs, polymyitis for starters, oh and reynolds -check that one specially.

Write a list of each illness and next to it write either a name of a family member who has it, or if you have even SOME symptoms of it, put those next to the illness. Some symptoms are so vague you may not think them worth writing down. Do so. Little funny rashes and skin conditions particularly come into play here.

If you are say linked up to the 4(ctla-4) here's where it gets interesting.

I had done my list and went off to the doctor to try and be confirmed with mild lupus. Well she went one further.

Mixed connective tissue disease is me - an overlap of three particular autoimmune diseases including lupus, not getting all of the symptoms of each one - just some.

That's it - there's me. Went home and read and EVERYTHING fits down to the tendonitis on the back of my ankle, to the rashes, the dry eyes, the swollen syliver glands, every last weird goings on.

It gets more confusing though with that 4(CTLA-4) cause even if you don't fit into Mixed, you may slot into Undifferential connective tissue disease. ie a mixed bag of symptoms taken from everywhere.

And what they don't tell you when you go for the ANA test: The symptoms come in "flares". ie you'll be fine, then you won't be. If you have your blood test done on a day when you are fine - you'll probably test negative. So if your like me and won't drive when your sick, bingo negative. Have been tested twice, once in 2002 and 2011.

ANA levels may only stay up A FEW DAYS even if you continue to feel unwell.

Now have blood request in bag and waiting for next flare when I will get a taxi. The doctor said she has another lady and they both know she has lupus but haven't caught the ANA up yet.

So there you go - 25 years with symptoms that affected my life and probably 30 since it started and I was 50 last year. I now know WHY.

Cried for two hours non-stop. Told a couple of people but they really don't understand what a relief it was, just to know.

No cure of course, but hey I'm not crazy.

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Re: Just popping in

Post  Cluelesskitty on Sat 25 Feb 2012, 4:56 pm

Marion, first, I am SO happy for you ! I cry myself from sympathy relief you must feel after all these years
of being doubted and branded as "self-centered, drama queen, hysterical, oversensitive, overreacting, hypochondriac"
-you name it, right?!

You must be really lucky to have this great doctor who wanted to bother at all, a Dr House almost looks like?

Whatever, what matters is YOU HAVE YOUR ANSWER and this indeed is TERRIFIC! I am so happy for you!!!
Yeah I know how people who never are in our shoes wouldn't quite get it but girl I KNOW how much it matter
so I can truly
share in your JOY!! cheers

I will certainly ask my dr to investigate this, I however seriously doubt she will do anything about it.

Still, I will do exactly what you are suggesting Marion, I will investigate my family history and once I will have it
as soon as the next occasion arise to go to Poland where I can pay for medical services by myself
to have done practically anything I want,
I will have the drs there investigate everything on the list, maybe even have the gene looked for.
(depends how expensive it is. I hope I can afford this).
I know right off the bat my late brother suffered from severe asthma in his childhood.

So, THANK YOU, Marion! :]

Well, while I understand there is no cure for the connective tissue disease you have, I hope there is at least
some kind of a treatment for you that would help you to keep things under control?

Gosh, finally, a vindication for you Marion!! yes!!
sunny

Risa


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Re: Just popping in

Post  marion on Sun 26 Feb 2012, 5:45 pm

Yes on feeling like a fool all these years.
A girl friend asked do I feel validated, and in some ways yes, but the more apt word would be LIBERATED.
Choices are now open to me.
I AM unwell. I can now choose how I lead my life.
Sounds silly doesn't it.
But you lose so much choice.
"Am I a lazy pyshco bitch??" was always the question.
It influenced every major decision in my life to date.

With my doctor, I basically got it half way there with the lupus and she carried it the rest.
I am not going to the trouble with the genetic testing, after reading all the symptoms I know it is me.
Even if I never manage the high ANA which is the main proof and can be tricky to catch, I KNOW.
Every i was dotted and every t crossed.
The complication in getting there, was that I was always tired, which proved to be Hashimotos. I went on thyroid replacement about six months ago.
Not having the tiredness allowed me to see the other symptoms much clearer.

The one thing that doesn't "fit" really well is of course the migraines. However, the autoimmune illnesses usually come in flares. A sudden rise in the antibodies making you ill very quickly. Anyone particularly who wakes up with migraines is probably a likely candidate. With lupus, sunlight plays a hugh part. I can vividly remember migraines striking while standing in the sun. Not every time for sure, but enough. It really makes me wonder.

The phrase that is still popping into my head every five minutes is "after all these years." I think this is going to take a while for me to become adjusted the idea that there is something wrong.

Hoping this gives someone else a clue. That we should have to go through years of doubt about ourselves is I think even harder than the illness.

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Re: Just popping in

Post  Cluelesskitty on Sun 26 Feb 2012, 7:07 pm

yes Marion cheers

No you weren't crazy, and no you weren't LAZY, no you weren't making it all up,

and yeah I so hear you when you say "after all these years" - it is my dream also to be able to say this,
I will admit I sometimes fantasize what will I do if something hopefully will ever be found what makes me so miserable,
weak and lethargic. Will I go and point my finger and yell at my Dr "What did I tell you ?!! what did I tell you?!"
or will I do a pot stirring dance in the office lolol or something like that Smile

I am so happy for you!

Risa

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