Yes Virginia, we have a diagnosis!!!!!

[Pooh]

They can, but the side effects are stinky.  The biggest problem for me will be a major flare where the groove deepens or starts lengthening.  They said that would mean more tissue and muscle damage and that's what they want to avoid.  Have to kill the immune system down to do that.  Prednisone for the inflammation and they have 3-4 immunity killing drugs they can try.  All of them have icky side effects.  My experience last time was yucky!

Everything else is not so bad to help relieve.  Fever blisters, my MD gave me a prescription for flares of that, I'm already on Lyrica and a muscle relaxer to help with pain.  The fevers and joint pain, just Advil.  They have me on Nexium right now for two months to try to help heal my esophagus....another lovely manifestation of this is GERD.  They think my chest pains are actually my esophagus spasming and that's all I can think of right now...Lol.  I'll have to just deal with the fatigue.  I'm actually hoping since this "fitness plan" we are on is giving me more energy, that it will help the fatigue not be so bad now.

They are suggesting that I have an EMG to see how badly the nerves and muscles may be damaged.  Also it will determine if I have carpal tunnel, which is a major side effect of having it on my arm.  The pain in my hand and numbness could be that.  My MD was wanting to do that one too because of the "cyst" or whatever it is on the back of my hand.  He said the same thing about carpal tunnel could cause that as well.  I told him that I would see if my hand was worse by the time I go for next regular appt in November and decide then.

But!  Here's that word.......I'm reading like crazy.  I'm hoping I will stumble across some things that might help from others that have been dealing with this.  I figure they are better sources than a Doctor that just reads about it.  They live with it.

[luise.volta]

Wow! That's a lot to assimilate! Prednisone is deadly but I have had to put it in my eye every day since I got Shingles in my eye six years ago. The Prednisone caused glaucoma and I had to have surgery for that after the glaucoma meds caused hypertension. Then the cornea finally had to be removed because the Shingles were thriving...in spite of everything...in the nerve endings of the optic nerve.

I honestly think that the increased oxygenation you are creating through exercise may be a major factor in managing it. Oxygenation brings increased oxygen to every cell and may do you more good than you can imagine.

[Pooh]

I think the exercise is truly helping.  It hurts when I do the actually exercising of my arm and shoulder, but when I get up the next morning, it feels better.  I'm hoping that will help strengthen the muscles as well.  I didn't think about the oxygenation part but I bet you're right!

[luise.volta]

It's the nurse in me. 

[Rose799]

Nurse Luise, how do you feel about this?  I just heard about this recently...another reason to exercise, if true.  I got my exercise done for today & am on track with the diet.  Exercising was disaster at first, but it does feel pretty good now that I've recuperated.   

http://www.livestrong.com/article/168080-lymphatic-drainage-exercises-massages/

[Sassy]

Pooh, I feel your relief.  I looked it up, too.  I'm so glad you took the time and perseverity to find a doc who took the time and effort to make a dx, since it seems pretty uncommon.   (A friend of mine who practices medicine says most docs think of the Top 25 most common ailments and past that, they're puzzled.)  One place I saw it written that morphea affects only 2 or 3 people per 100,000 people.  But you, pooh, you're one in a million!

[Sassy]

http://www.experienceproject.com/groups/Was-Told-That-I-Have-Morphea/146034

http://www.dailystrength.org/c/Scleroderma/support-group

[Pooh]

Awww...thank you Sassy!  I ran across some statistics yesterday that said if affects only 20 in 1 million so that would fall in line with what you found.  I have also been reading that most people, it tooks years for them to get a diagnosis because it's so rare that most Doctors have never seen it.  Most of them it took 7-15 years to finally figure it out, so now I am feeling guilty for whining about my 19 months!

Thanks for the links.  I signed up for the support group and have already found some great information.  Thank you!

Rose, that is interesting.  I would have never linked oxygen to lymph node drainage.

[Pooh]

And don't think I didn't tell my DH last night that from now on, he better tell people that he found a rare wife! Lol.

[luise.volta]

I love the up way you are approaching this and how your humor keeps seeping in. You are rare indeed!

[pam1]

Pooh, wow...just wow.  That's a lot to take in!  I'm impressed with how well you're handling it. 

[Pooh]

Thanks!  I'm not promising I will not have bad days and whine...Lol...but seriously, there is nothing I can do about it.  Kind of like my OS/DIL.  It wasn't my choice and now I have the right to decide how to live my life.  I can lay down and die or deal with it and enjoy my life.

I got a fit of the giggles about it last night.  Don't know if it was stress relief finally or just me being silly, but I couldn't help it.  You remember that old joke about a guy shot his horse because it broke it's leg, so now he has a horse with a broken leg and gunshot wound?  Ok, if you haven't....laugh right now.  I got tickled last night because I just realized that I have been telling people for a year and a half I have a groove down my arm.  Now, I have a groove with a scar in it!  (from the biopsy)

Do not ask me why I found that so dang funny....but I was remembering that old joke! 

[Pooh]

So even though I have tried to have a good attitude about this, I hit a wall last night.  I know part of it is that I am still having a minor flare, which makes me feel blech....combined with I took the last dose of a medicine Saturday and am feeling the rebound effect from going off of it. (That is better today.)  I have figured out that I do well until I get several weeks into a flare and then I get tired of hurting and feeling bad.  I'm trying to figure out some coping skills when I hit that point.

Part of my wall is also all the reading I have been doing the last week.  I believe in educating myself, but it's just depressing at the same time to read over and over again "no cure".  It hit me last night that I am going to be in pain the rest of my life.  Then I felt bad about feeling bad about it because I got the good one.  I'm reading over and over again, people that have the other form and their life expectancy is only 10-15 years.  How selfish am I to be whining about mine?  Geesh.

I also know that I am mad at the Doctors.  I see my MD today and I'm mad at him.  He is a great Doctor, the only one I have ever had that I feel like he cares.  Last appointment, when I told him what the Dermatology guy suspected, he seemed nonchalant about it and didn't agree.  He said he had never heard of that type of Scleroderma and I didn't show the same signs of the other kind.  That's actually one of the things I like about him, he never lies to me.  He's not afraid to say that he doesn't know about something.  So I called and left a message for him Friday telling him about the positive biopsy and wanted to know if he was interested enough to read up on the disease and continue to treat me.  He hasn't called.  I'm hoping it's because he saw I was scheduled to come in today and wants to talk face-to-face, but it also made me feel like he had no interest.  Ok, I'm being a whiney-butt today and I know it.

In my research, it is repeated over and over that I need to get to a Scleroderma Center and see a specialist that that does care and is knowledgeable.  They are saying that they will lay out a plan of action and work with your local MD or Doctor of your choosing to monitor your care.  That sounds great and I wouldn't mine having to travel 7-10 hours to go to one of those but first I have to find someone local that gives a darn and is willing to work with the specialist....sigh.  The good news is if I do travel to one of those, it also will start a case file with them so if some new drug comes up in a trial and I fit the criteria, they would call to see if I wanted to try it.  Again, that is all based upon having a Doctor local that will monitor and work with you....sigh again.

Ok, so I'm trying to remain positive today and think that I will walk in this afternoon and he will be all willing to do all this.  Positive thoughts....positive thoughts....

[elsieshaye]

Pooh, sending you my best thoughts.  I think it is part and parcel of a chronic health condition to feel like this about it, especially soon after your diagnosis.  When I was first diagnosed with diabetes, I was the positive-attitude-take-charge poster child at first, but a few months later I just crashed, burned and got rebellious and sad/angry/scared.  It's good that you're aware of how you're feeling.  You'll get back to your old, positive self, but sometimes you just need to give yourself some time to process and feel sad and angry.  It really doesn't matter that you "don't have it as bad" as some other people - that doesn't make your own grieving any less valid.  ((((Pooh))))

[Pooh]

Thank you elshieshaye.  Knowing you know helps.  I know it's part of it, but dang it...I hate feeling this way!  I know you have struggled for along time with your diabetes and I'm so sorry.  My GM was a diabetic and I know how hard her day to day life was.  Two shots a day, monitoring her blood sugar, planning her meals...on and on.  She never complained and never said a word, always a smile on her face and a positive disposition.  That's my goal!  It's just not today.