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#1 northendpoet


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Posted 18 October 2009 - 04:56 PM

Had a meltdown. My significant other says it's overdue but how embarrassing... I see a specialist next week and believe I'll finally get a diagnosis. That should be good news... it's certainly scary ... so many emotions. I keep thinking 'How will I tell my father and my daughter?' And I keep 'hoping for the best' but am living with a body that comes up with crazy new aches, pains and dilemmas every week. Like now I constantly feel like I have something stuck in my throat... what's THAT about?

So out to dinner with friends last night and someone says "How are you?" and I start to cry and cannot stop. We had to leave. The meltdown continued into the night and most of the day. I'm exhausted. I want an accurate diagnosis, I want to get better medical care, I want it to be Friday and I'm so scared. Almost like without a firm diagnosis then nothing is real even though it is.

So far the last five months have been like a bad dream. It's almost so crazy I can't believe it, and then it's so real I can't deny it. Anyone else been on this roller coaster? Any tips?

Thanks for listening.
Northend Poet

#2 Margaret


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Posted 19 October 2009 - 01:42 AM

Hi Poet ,

I am sorry to hear about the meltdown but want you to discuss this with the specialist next week. When my son was first diagnosed, he also developed autoimmune induced depression. There is reading material under the medical section for it. The same autoimmune process that affects your body also may affect the chemicals in the brain. Don't be ashamed or embarrassed to talk to the specialist about it. It may be something you can't prevent, but you can be treated for it to help you deal with the stress/body issues.

Take care, Everyone.

#3 ladyhawke


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Posted 19 October 2009 - 01:53 AM

Oh boy.....do I know where you are at right now! I went through this 3 years ago. No one could find out what was wrong with me. I couldn't get out of bed or to the bathroom by myself. Never have I ever ever been sick like that. It was almost a year before the diagnoses came. Once you know your enemy, you can deal with it. But how do you deal with something that no one can put a name too. Just hearing the words polymyositis and scleroderma was actually a relief to me. Then I could look it up, know it, recognize it and most of all "cope" with it.
Hang in there.....stay strong. I too did the meltdown thing. You needed to do that. Keep us posted! Healing Hugs - Lisa
Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

#4 janey


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Posted 19 October 2009 - 03:27 AM

Hey Darlin'.
Please don't be embarrassed by your meltdown. We've all been there, done that. It's so very frustrating when YOU know something is wrong, but your doctors just can't find out what it is in a timely fashion. Unfortunately, it's not all their fault. There are several diseases, especially autoimmune and even more so - connective tissue diseases (CTD) that are difficult to diagnosis. So just treat it like a school experiment with your body as the subject. Write EVERYTHING down - symptoms, timing, getting better, getting worse. The more information the doctor has, the easier it is to make a diagnosis. Also, when it's written down, it's easier to discuss without getting emotional to the point of a break down. I speak from experience. :)

The stuff getting stuck in your throat could be a type of dysphagia or difficulty swallowing. It's common with CTDs and other other disorders or conditions. Just eat slow, take small bites and chew, chew, chew then swallow. Never sit down to the table without a glass of water. Personally, I find cold water makes it worse, so I just drink room temperature water or hot tea.

In fact the hot tea is a good stress reliever. Maybe a few cups of that this week will help you get through. We do have a section on Emotional Adjustment that might provide some ways to relax. Getting it all off your chest is a good thing, but you need to relax and get as much stress out as possible. So please take a look at those pages and see if any thing would work for you. In the meantime, lots and lots of big hugs your way.

Please let us know how you appointment goes.
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#5 mando621


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Posted 19 October 2009 - 10:33 AM

Hi Northendpoet,

I understand what you are going through too well. I've actually been trying to find answers for about 6 years. I have esophageal involvement and it can feel as though something is stuck in my throat. I also can get very emotional and then it just seems to make that problem worse.

I don't have a clear diagnosis yet from the rheumatologist, but he has admitted that it is something that needs to be checked on often. I had baseline tests run, so I know where everything stands right now. The only thing I don't have is a name to it. So far, it is possibly undifferentiated connective tissue disorder. The only diagnosis in my records is sicca which is dryness. I've seen specialists in G.I. but I haven't been able to see a rheumatologist that specializes in scleroderma because it takes a special referral, and they aren't giving me that at this time.

I've thought that I would have answers a number of times when I saw doctors, so I just want to make sure that you will be prepared for the possibility of not getting direct answers. It is an emotional rollercoaster for sure.

I recently was with some people from a support group, and they both told me that I was very negative. I didn't think of myself that way, but my husband confirms that I often have a negative view. I totally lost it for a day or so. I couldn't go without crying when I thought about those comments. Then, I made an appointment with my doctor. I admitted that I feel depressed a lot of the time, which is probably due to the illness, and the uncertainty I'm dealing with. My doctor recommended one anti-depressant and said think about it to me. I've decided to hold off for a short time. I'm trying to think more positively and see if I can maybe get more exercise which should help with my moods. I don't want more eye trouble with dryness than I already have, and I worry about other side effects making some of my other issues worse. I'm giving it a week or so before I call. I think I'm going to pursue getting some support from the university counseling center also.

See, I'm being negative in my paragraph above the previous one. Telling you to prepare for the possibility of not getting all the answers. I don't see it as being totally negative, but more realistic. I have been so disappointed at my appointments that I've come away in tears on more than one occasion. It hasn't been until this year that I feel that the doctors are finally taking me seriously, and only because I saught answers from a GI person about my swallowing trouble. Once my swallowing issues were confirmed, the rheumatologist was more accepting of the possibility that everything about what I've told him is accurate. I think he thought of me as a hypocondriac.

I really wish we could all have a big tea party and be able to give a shoulder to cry on. I don't have anyone to really talk to here and with the local support group being much less than supportive, I've really got to find someone else to talk to.

Thank goodness for this board and the ability to come here and at least say what I need to say. I hope you find some help in all this. I sure get lots of help by reading other people's postings. It is amazing what type of strength is out here if you come and ask.


#6 debonair susie

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Posted 19 October 2009 - 11:17 AM

Sadly, we DO know the feelings, northendpoet and it's not a pleasant one.

I went through that, off and on, for four years, before I got diagnoses.
I cried, went through the self-doubt, questioning whether or not I really WAS
experiencing the symptoms or if I was a hypochondriac.

I never realized it could possibly take as long as it did...for the dr(s), to
figure out what was "wrong" with me, hence the second-guessing.

I am just so thankful I had the internist I had. She KNEW there was something, but
told me she would be sending me to a gastrointerologist who she felt would be able to
"break the code". She was right! I (later) sent her a thank you note!

Please know that whatever you find out, we're here for you. I hope your husband or someone
will be with you so both of you can listen to what is being said.
It takes time to digest what we "learn", believe me. Yet, there are folks who are "family" here
and have experinced a bit of nearly everything.
Please keep us posted, if you would?
In the meantime, here are some {{Gentle Hugs}} for you.
Special Hugs,

Susie Kraft
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#7 Amanda Thorpe

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Posted 19 October 2009 - 11:21 AM

Hello Northendpoet

As you can see you're among friends who can relate to your experience. As awful a diagnosis as scleroderma was for me the alternative, no diagnosis, would have been worse I was in such a bad way when first diagnosed. When you get a diagnosis you have something tangible to hang your symptoms on, it's an acknowledgement that you really are ill, that it's not all in your head, that you're not being a whiney whimp!

Regarding the appointment itself, prepare for it by writing all your questions down and consider taking someone else with you so they can hear what you don't. Because the first real appointment can be such a big deal it can all become a bit of a blur, over before you know it and you only remember your questions as the door hits you on the butt on your way out. The appointment is your opportunity so make the most of it.

My only tip for dealing with the emotional rollercoaster is to take it easy on yourself, by that I mean don't pretend everything is alright when it jolly well isn't. Should you get a diagnosis of scleroderma you need to give yourself time and space to adjust to the fact that you have a chronic illness and to grieve the loss of being healthy. Although the diagnosis of any chronic illness can be traumatic it's by no means game over, life becomes different but that's not always a bad thing. My post sclero life is nothing like my pre sclero life nevertheless it's still a wonderful life!

Please keep us posted and take care.
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#8 northendpoet


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Posted 19 October 2009 - 03:29 PM

Thank you all for sharing your hard won wisdom and support. Today was better and I feel hopeful. What a crazy roller coaster this is. I want to have more grace about me than I've had lately.

Next week my sweetheart and I are going on vacation, much deserved, with a hope of feeling like a couple again. And maybe even a whole person again. I've missed feeling good, feeling carefree.

Thanks again for all the love. I really appreciate it.

Northend Poet

#9 janet905


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Posted 19 October 2009 - 06:23 PM

hi northendpoet,
so sorry you are going through such a difficult time.i have been there and still have some days like that. I too was told I was depressed after I was diagnosed with scleroderma. I tried an antidepressant with no good results. one of my doctors( a very wise one) told me the antidepressant didn't help much because the real problem was ILLNESS and exhaustion. they look a lot like depression. doctors often don't recognize that we were formerly active vibrant folks who now have to contend with anemia, severe pain, changes in our bodies that would flatten the average person. we, however, tend to keep going and pushing ourselves and add frustration with that(long time to diagnosis, lots of tests and doctor visits) and anyone would snap under that pressure. being waterboarded would be easier! I feel so much better now than I did in the beginning. I am stronger, work full time and stay fairly fit these days. of course I am not normal healthwise, but recognize that, and do the best I can. you will find your way through all this and be stronger for it. just remember that we are here for you and know exactly how you feel. most of us have walked that long walk. and yes, it's ok to feel sad sometimes!

#10 charliehorse


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Posted 19 October 2009 - 10:46 PM

Hey there, Northendpoet, :bye:

Yes, it's such a shock to the system isn't it. I still remember the somewhat gobstopping, ill-considered words of my doctor, "It's a timebomb," he said, "Does it mean you've got ten years? Twenty? Fifty? Who can say?" I think I was about 24 or 25 at the time.

As time has passed and I've replaced him with a newer model, I really do laugh when I think of his ignorance, but at the time it catalysed much trauma, grieving, terror, fear, anger, and so on. Like you I didn't know how I would tell my family, I think I downplayed the whole thing for years, pretty much keeping them in the dark, which probably wasn't the best approach. But, like you, I was so upset and afraid.

From what everyone says, you can take comfort in the fact that these conflicting emotional responses seem to be completely normal.

I reckon it can be a bad choice, though, to look at too many scary photos and read too many sad stories about scleroderma when we're in that state as it can eliminate hope. And there's always hope.

Enjoy your break. I hope your time away will be filled with much distraction and fun. Meanwhile, silly comedies always work for me. :D

PS. I just remembered reading a study that showed that when we cry we actually release stress chemicals - so crying is good! Very good! :crying:

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#11 Joelf


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Posted 20 October 2009 - 03:04 AM

Hi Northendpoet

I'm so sorry to read that you're feeling so low.

I do think the very worst thing is not actually knowing what the problem is; before I was diagnosed I remember thinking 'What the matter with me?' as I was feeling so dreadful & normally I am a very upbeat sort of person from the 'pull yourself together!' school of thought. ;) I really don't do self pity but I was worried sick that I had the worst sort of Pulmonary Fibrosis & was actually going to die or even worse for me be totally incapacitated & have my poor husband having to spend his longed for retirement looking after me. :(

Thankfully once I was diagnosed I was able to get the whole thing into perspective & hopefully once you know the true extent of your illness you will be able to as well; I do hope so. :)

Knid regards x
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