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notlettingo

Just Learning about the Disease

35 posts in this topic

Thank you for your reply Craig -

 

I think I understand what you mean by becoming my own doctor. My rheumatologist just called me to explain my test results. But he didn't really explain them just reinforced that yes I do have MCTD. But I think you might have misunderstood something somewhere - um, I hate raw eggs! Uuugh! Actually when I read that, I think I threw up in my mouth a little bit. LOL But, no, my daughter wants me to go raw vegan, which of course would not include eggs, raw or otherwise. So, ya, thanks, I will be careful.

 

As far as being my own doctor though, I'm so tired and I don't want to face any of this. Right now as I type even, my fingers are sooo incredibly painful - they are frozen, white and the ends keep splitting. I don't know how to stop this splitting or the Raynaud's, I don't know how to make myself better and I don't know how to be happy about this. I don't know how to put a positive spin. The doctor ticked that I don't have depression - well, if I don't present with the classic signs of depression - then truly, there must be no such thing as depression, because man, I'm down there on the totem pole of sadness! But anyway, when I'm looking at everything for MCTD, I just want to go to bed. I don't want to see it, I don't want to believe it, and I don't want to feel it anymore either! :emoticon-dont-know: :crying:

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NLG,

 

Take a deep breath and relax for a minute. Then take one thing at a time. The more upset you get the harder it will be to control your symptoms. Yes, all of this is scary and overwhelming, but at some point you have to stop being overwhelmed and take back your life.

 

I would start with some daily relaxation exercises - just close your eyes and breath and clear your mind. Then focus on warming up your fingers. I do that by keeping my core warm and by always having gloves and those chemical heat packs (I also have a secretary who is an absolute furnace so she is always willing to hold my hands to give me a shot of heat). Keep your hands and fingers gooped up frequently. When you get a split slather whatever works on it and keep it covered and dry (as in not letting water get to it).

 

If you are feeling depressed get in to see a psychiatrist and then a therapist. There are things you can do, and by doing them you will feel much better. Focusing on how overwhelmed you feel will result in just that - feeling overwhelmed. You will get through this and be okay and the way you will do that is by getting up everyday and finding the things you can do that will make you happy. Another person on this forum once told me about laying in bed, after a long stay in the hospital, and seeing a red tail hawk sitting in a tree outside her window. She was moved by that moment and it stays with her still to this day. Those moments are there, you just have to find them and focus on them.

 

Jill

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Hi,

 

Sorry about the egg confusion.

 

Are you taking anything for the Raynauds's? There are many different medications that might help - calcium channel blockers (nifedipine), Revatio (a smaller formulation of sildenifil - the same drug as viagra), nitroglycerine cream.

 

Craig

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:emoticons-yes: Wow, I just had an amazing realization, I am grateful for the Raynaud's, and for my face going numb. For almost all my life I have suffered such cruel pain. Had to work through it - sometimes bringing me to tears, lack of proper sleep, I could go on. But, as Jill says, I have to go on. I have to get through this just like I have gotten through every other obstacle in my life! But, back to the being grateful to the Raynaud's and numb face, before that, for years, I was back and forth to doctors always being told it's in my head, it's not that bad, and always end up calling everything fibromyalgia. Twice, in past years, I was told by physicians that I have the body of an 80 year old. I am now 45. Now, the doctors have a diagnosis, they actually realize, yes, the pain is real - I have finally been diagnosed with Mixed Connective Tissue Disease - as I've said before. But before now, I have been so angry and upset. Don't get me wrong, I'm still angry, I'm still sad. But, I do have to keep going, if for no other reason, but for my daughter! She just turned 23 and without her, wow, my life, would have been so empty. I somehow realized tonight, that I am grateful, because now, I can get the help I need to deal with the pain etc. Thanks everyone, your kind words are amazing. I had no idea a month ago that any of this even existed. Life has an interesting way of getting our attention! :thank-you: Now, I will try to look at ways of being positive. I will try. I will try not to tune out. So, here's to what ever the future holds! :nervous: :unsure: :)

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Hey, no worries about the egg Craig.

 

It's all good. Anyway in response to your question about med, I have been started on flexeril, novo chloroquine and Adalat XL. The Doctor told me it could take anywhere between 1 and 3 months to see any improvement. I also take tylenol 4 or pain medication and lyrica. I find it extremely difficult to find any relief, but somehow, someway, I will get through this and I will be better for it! I always wonder when life circumstances take a spin - what exactly I am supposed to learn or know. I just know that these are always lessons, either for now or later, they are often things that make us stronger for what lies ahead. At least that's the stuff I try to tell myself! LOL

 

Anyway, as I said earlier, I will try!

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Just for your information:

 

Novo chloroquine is an anti-malarial drug. Some of these drugs are useful for autoimmune conditions. However, most common for this is hydrochloroquine. Many of us on the forum take this drug. It is also called plaquenil.

 

Flexeril is a muscle relaxant and is likely for Raynaud's, unless your doctor has said otherwise.

 

Adalat is a calcium channel blocker, and increases peripheral circulation, so definitely to help with Raynaud's.

 

If your Raynaud's is not adequately relieved, you may want to discuss with your doctor the possibility of taking one of the erectile dysfunction drugs (viagra [revatio], cialis, etc.) Many have had good results from these drugs. Nitroglycerine cream can also be helpful.

 

There is also an old blood pressure medication called prazosin (mini-press) that has helped some with Raynauds.

 

Sometimes the doctor may be hesitant to prescribe these vasodilating drugs because they tend to decrease blood pressure, which can lead to fainting. This can be easily monitored with a blood pressure machine available at any pharmacy.

 

Craig

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Hello NLG

 

The body of an 80 year old? Fantastic because I clearly have the body of a 90 year old, sorry but I have to outdo you...hey we should start a club! You see I have to have nurses come in twice a week to dress my foot ulcers...I am 43 not 93 for crying out loud! :angry: Once upon a time I was wearing beautiful shoes but now bandages and slipper boots...how the mighty are fallen! :lol:

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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I'm not trying to outdo anyone as far as pain or anything else goes. I am just stating how it is for me. I guess I misunderstood the reason for a support network. I figured I would be able to express myself without offending anyone. so, heres hoping everyone with MCTD/Scleroderma has huge success with their treatment. I am off to conquor this disease!

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Hi Notlettingo,

 

One of the ways many of us cope with the disease is to joke about it and how it is affecting us. Right now I'd say I have both you and Amanda beat because today my body seems to think it is 100 years old!

 

It's hard sometimes not to see things as a competition: levels of pain, number of doctors seen, which complications we have. I think in some strange way certain complications may have a greater cachet than others. Does having pulmonary hypertension AND pulmonary fibrosis mean one has hit the jackpot? The real situation is that because of our own experiences we do understand what others of our community are going through. There are no winners or losers, it isn't a competition, and we could all say "I feel your pain" and mean it.

 

When so many of us have had to go through years of the "nothing wrong with you" wait for a diagnosis, been told we're lucky because we only have limited systemic sclerosis (what a misnomer that is), that we look really great so we can't possibly feel as bad as we say we do, we soon realize we have to develop a thick skin. And yes, I did intend that pun. :)

 

We don't have to satisfy anyone's criteria of pain level, shortness of breath, or how badly the cold affects us. We each have to live in our own reality - there is no other.

 

You haven't offended anyone and I hope you won't be offended by the occasional off-the-wall sense of humor. Read it as someone who is dealing with the things none of us want to have happen and who is still trying to laugh about it.

 

Best wishes,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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