Wednesday, June 16, 2010

Sclero-Rookie

Hello there to my friends, fam and anyone reading.

I am new to this blog thing and this is my first official blog post. So forgive me if I make any mistakes or any Blog faux paus. I hope to try to post once a day, but if that proves to difficult - than I promise to post at least once a week.

I am starting this blog in the hope that others with Scleroderma will find it and be able to see what my life is like with this disease.

When I was first diagnosed I was constantly wondering..."Is this feeling Sclero" or "Do others feel like this" or do others "struggle with this". I must say you feel alone because your sense of normal has changed, only you are not sure what your new "Normal" is with this disease.

This disease is so rare, that not many people have it, which adds to the alone feeling as there are not many to talk to about how you feel, or are supposed to feel, or validate that what you do feel is okay.

What I have found is that your new "Normal" is always changing anyway.. as this disease is a series of losses and readjustments..which in a way makes it not only a physical disease, but a mental one as well.

Although I suppose any Chronic Illness does that. Chronic Illness has a way of changing your life and your life priorities... so i try to do it with a smile and a sense of humor which I hope you will see when I begin to share my life with you.

Disclaimer: I can be very sarcastic... so you have been warned : )

Well I guess I will share a bit about myself and my stats. I am a 40yr old female and I live in Arizona. I was diagnosed with Limited Systemic Sclerosis/Scleroderma in October of 2009.

I knew something was "wrong" after I participated (kicked ass) in the Susan G Komen Breast Cancer 3-Day walk. I felt like I could just not recover. Granted it is a 60 mile walk in 3 days, but I was an extremely active person before. I trained for the walk (10 miles day) and it was already my habit to work out at the gym 5 days a week, so physical exercise was not new to me. This fatigue was different. I felt SO tired that I wanted to cry. The fatigue was almost tangible and so severe that it almost hurt to be tired.

I remember feeling like a rock start if after work I was able to do and fold a load of laundry. There were days when I could not clean my house. I would call my friend (at the time) and tell her "I just cant do it" - I think I was almost searching for validation that it was "okay" and perhaps that she had been there too....

Then I thought that my fatigue and joint aches were depression. I do NOT do well tired. Believe me, I am "Type A all the Way". So as simple as it sounds it was the fatigue that brought me to the doc.

My doctor (I call him Dr. Feelgood because he is so nice) was open minded enough to listen to me and hear me, and for that I am forever grateful. He did some lab work and my ANA came back positive. I was then sent to a rheumatologist who did a reflex panel which came back with Centromere antibodies - and from there sent to the Mayo Clinic where I was put through the ringer - and Wala! The rest is history. Limited Systemic Scleroderma.

Well, actually that's not all, but I have to put some stuff on Craig's list, then I promised the kiddo a movie, so that's all for now. I will post next about my Mayo Journey. Wow - some of those test were no picnic!!

Anyway - Bye for now.

Peace and Love

Stacie

5 comments:

  1. WOW! Whoops...so many grammar errors and spelling mistakes. Sorry Folks! Better Next time!!

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  2. Its great that you have a blog now. This will really help you to sort through everything you are going through. I promise it has been such a release for me having a blog.

    Finding out you (or your kid as I did) have a rare nothing you can do abotu it disease is devastating & the only thing you can do is try to raise awareness & fund the research for a cure.

    Plus you may be helping someone else who is going through the same processes you are going through to not feel as alone as you have felt.

    Way to blog! <3 you & I am now following your blog.

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  3. Wow, you were lucky to get a diagnosis so quickly, I waited 9yrs. I was a very active nurse, and aeorbic instructor. Started with fatigue, chronic hand swelling, and shortness of breath episodes. It evolved over the years with a severe vascular component, arrhythmias, necrotic bone, and the GI stuff. Unfortunately I was sent from specialist to specialist for each symptom I was experiencing, and no one put the big picture together. ANA positive, centromere positive. I don't know what my ultra conservative rheumatologist was waiting for. Luckily I am being treated at the scleroderma center now. I have had to give up nursing for now with the bone issues and vascular problems. I have had to give up a lot actually, but despite the pain and fatigue and endless procedures, lab work, appts, and dental issues...I am pushing forward.

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  4. Hi Krissy ~
    I was so lucky and I am grateful for it everyday. I think it was the Mayo Clinic I have to thank...but with that said, the very first Rheum I saw said "You have Crest" so he was half right.

    I too was a nurse. Actually it is very strange, many people I see on the Sclero sites were nurses. Hmmmm?

    Mine started with the fatigue and SOB episodes (and GI stuff I didnt realize was connected) and I now get the hand swelling, random digit swelling, and stiffness - oh so stiff.

    And the rest you know from the blog.

    What meds are you on? What Sclero center are you at?

    Yes!! Keep on pushing forward Krissy, we are in it together!!

    If you ever need to vent, whine, rant, rave or have an online pitty party - just contact me.

    It's hard sometimes, I know.

    Of course sometimes we celebrate and share greatness too - so if you find any new treatments or new advice, bring it one!

    All the best to you.

    Thank you for writing.

    Regards ~

    Stacie

    * Your pic is just beautiful!!

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  5. I am at the Johns Hopkins Scleroderma Clinic.
    The constant med changes have finally settled a bit. Off methotrexate and plaquenil and hair has grown back. Not sure if it fell out from meds, thyroid, vit D issues, stress (or a combination). Taking Amlodipine, Persantine, ASA, Kapidex, Vit D, Vit D3, MVI, Miralax, Citrucel, Niacin, occasional pain med with all the necrotic bone issues (although I rough it out alot), they would like to add Revatio b/c raynauds is so severe but in appeals with insurance. I have done Flolan IV infusions without success. The vit D plus D3 was very helpful (thyroid was shutting down from vit D deficiency as low as 7- was able to get levels up and reverse thyroid issues with the combination and no interruption in dosing. My first rheum would do weekly dose x 3months and then stop for a level, but the follow through was horrible, and the constant interruptions in dosing had me sub therapeutic for years. I believe this made everything worse-the fatigue, severe reactive hypoglycemia, bone issues. When the thyroid is out of whack, everything is. I want to mention that my thyroid levels were borderline high but constantly trending in upward direction- no one picked up on this except an endocrinologist I was referred to for severe reactive hypoglycemia. Thank heavens for her, these other docs wrote it off as normal. I am happy with my doc at Hopkins. She is very thorough but not an alarmist and does all of the appropriate baseline testing regularly. Doesn't help the day to day of sclero, but it does ease my mind that I am in the right hands finally. I have learned to live with the stiffness and pain, the constant meds and endless appts or procedures...but I am really struggling with the dental issues, it is heart breaking to me (was always one to smile and show the pearly whites). Its a bit odd posting such personal info, but I hope that this could help someone else.

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