- What is Scleroderma? (AKA "The Big S")
- The Spoon Theory
- Early Onset Symptoms
- Got Muscles? Got Weakness?
- Centromere B Antibodies - Scientific Stuff
- GI Involvement in Scleroderma
- Joint Involvement = More Severe disease. Great.......
- Fibro -My-What? Myth or Legend.....This ones for ...
Friday, March 18, 2011
Okay - So as you can see from my Blog, I was MIA for a while there since my last post in December until things settled down a bit and we moved into our new home.
I guess for the sake of record keeping, being a good historian or curiosity for anyone who is "curious" I will do a quick overview in the "Life of Stacie" since December 2010.....
December was great. I felt pretty good. No real Rayauds issues other than needing to wear gloves a lot and the tag a long stiffness... but no true Raynauds attacks that so many others suffered this winter. I was pretty lucky.
I don't think I had too many flare ups either... I can't remember now exactly when or how many, which I am mad at myself for - as the whole point of me sharing is to help others "feel normal" - like I so needed/wanted to when I felt alone with this disease. I promise I will do a better job graphing when I have them and for how long they last.
The ups and downs of Autoimmune disease was most definitely with me from December to February, no doubt - but I kept myself really busy when I was feeling good. A friend of mine was off of work at the time, so we kept each other going. Did some home organizing and things... which was great. I was able to keep up during the day and just called it early nights.... Of course I had the stiffness and soreness that comes along with using the ol'Sclerie Muscles or over-doing it - But I was actually really good about pushing through most of it and just REALLY taking it easy at night. But for the most part, I was pretty active in December and January.
Which brings me to, what were you doing?
Well - here's the low down:
*Did some home organizing in December
*Got a concussion in December (Walked into a wall - Don't ask)
*Celebrated the holidays by doing as much "Griswold" stuff as possible - but said "Concussion" put a damper on about a week of my holiday spirit (BTW - Concussion - THE WORST - would not wish on my worst enemy. You feel out of it)
*Went to court - which is scary and emotional. Yuk!
*Family got the flu before New Years, so stayed home New Years Eve
*New Years Eve weekend we started the move into a new ONE STORY home (Renting)
*Husband traveled for work most of January, so I moved alone with my son
*Had a flare up after said "Moving alone" : )
*Broke tiny bone in hand during move - had a flex cast. I was Gimp-master J
*Went through another "Stage" of acceptance - I think the IT hit me during this time & Im not sure why. I had been helping a friend through her issues since Dec of the year before, and she was stable on meds now and doing great - but that left ME alone to have to deal with me and my issues (not fix someone else) so I finally had to face my illness and not defer onto someone or something else. Very Difficult. VERY lonely.
*Our Bankruptcy was officially discharged : (
*We walked from our home ; (
*Was told by PCP annual labs showed an increase in my M-spike, so was referred to Oncologist
*Found out my Brother was homeless again living in a park in Las Vegas and back on drugs.... ; (
*My Birthday Jan 20th
*Was in the hospital for said birthday with bizzaro heart rate issues (No Bueno)
*A friend ended our friendship via text - Didn't need the stress : (
*Dealt with the above - lol
*Admitted to Hospital again due to heart rate issues
*Diagnosed with POTS - Postural Orthostatic Tachycardia Syndrome (the culprit causing said HR issues) : )
I Think that's about it - I think I handled myself pretty well considering when you see the list in black and white. Apparently a few did not think so - but I admit as I have in my previous blog - after that first hospital admit with my husband gone and being alone with my son - THAT was scary and was truly anxiety producing... but I am proud of myself for getting through it - albeit with the loss of a friend - but I got through that and the new diagnosis nonetheless and am better for it.
That's why I was not here to blah blah blog away at you much since December. I really enjoyed the heck outta the holidays and had a GREAT CHRISTMAS this year... oh it was a nice gift compared to my holiday last year after the blow of being newly diagnosed, but it was an amazing holiday.
I loved being active and getting myself and my life back again. With the New Year and the New Changes, the New House - I do feel like a new woman in a way. I think that once I absorbed the and dealt with the loss of my home and what that meant - having a new home to move into was a great way to start off the New Year.
I tell ya - I am a ONE STORY convert now though - Love IT! Easier to clean, easier to hang out together since its one floor, no stairs - Ive just been so much more active and alive since moving.
For those of you that don't know - Yes. We are "One of those" - If you don't live in Arizona, you may want to judge or not agree with our decision, but we are in one of the hardest hit areas in the country for foreclosures and housing crisis. Our home was about $150,000 under water and when we called the bank after the "Obama" plans came out - our bank pretty much told us to walk. It's pretty sad when your own back thinks your house is worth more as a right off - lol - but nonetheless, it was a difficult and emotional journey to come to that decision and then to follow through and actually leave the home. It really lent to some pretty introspective days and moments of melancholy - but I think we made the right decision. We will be able to buy another home in a few years and will start off with more equity than if we would have kept our other home. Don't get me wrong - tears were shed and it caused some serious ulcers, but it was the right thing. We consulted three lawyers and our financial consultant, the bank, and everyone pretty much said.... you re screwed - if this was a stock you wouldn't keep paying into it would ya? So..... that is the reason for the move into a one story home.
Along with that we did file Bankruptcy. After losing my Job and Getting Diagnosed with Scleroderma in November of 2009 it did a number on our finances. I think one of those alone would have hurt as - as "The Mayo Clinic" is NOT cheap - but to get a double whammy like that really set us up on the road to Bankrupt and Letting our home go. If I would not have lost my job, do I think things would be different - oh HECK YES - but I did not ask for those things to happen, they just did - that was my path to walk and I did. I just hope I walked it with grace and made the right decisions... Again - NOT an easy decision to come to and most definitely a very emotional journey. A roller coaster of emotions and fears to face... but once you walk through them and are on the other side, it is a load lifted off your shoulder and a pass to get your life back. It hurt to get through it - but now - in this moment, the level of stress in my life is so much lower and therefore I am functioning at such a higher level with my Disease and My symptoms. Amen to that!
I think that's about all..... Since my last discharge from the hospital I have been doing great. I have to see "The Wizard" aka - Mayo Clinic - in April for the POTS (which is directly caused by autoimmune disease)
I have been pretty active - doing at least 30 mins of cardio everyday if I like it or not. It is good for me and will keep me healthy and I must do it. It has been a comedy of errors to exercise with the POTS - but I am woman hear me roar!!!
We have gone hiking, camping, off roading, and doing a lot of family stuff. I have mini-flares where I know its not a perfect day, but I won't let it get me down. I still make myself workout (albeit not the same as I did before all of this monkey business - aka The Good Ol' Days) but I work out my way now and feel good.
I have lost 6lbs on Weight Watchers.... finally getting the steroid weight off and cortisol tummy be gone. My thyroid medication was upped as I was still pretty hypothyroid - they found that while in the hospital, so I am sure that is helping with my weight loss too!!
My Ear - I followed up with the ENT and found that it is NOT Menierres Disease like he thought - but just good old "Autoimmune Ear Disease" - So basically my loss of hearing in the right ear and the bouts of dizziness and vertigo are - You guessed it - From the Autoimmune disease.
Ahhhhhh The Joys of your body eating itself..... : )
The MGUS - M-spike, well just one more doctor to the list. I now see an Oncologist every three months for labs.. nothing big and its no biggie - until it is. Right : ) Until then - I live.
And lastly this POTS thing I keep talking about. What the heck is it? Well - that's for my next blog. Its very interesting and bizarre at the same time, so I hope you will read about it and educate yourself. Until then - I hope you are enjoying the beauty of spring.
""Sinyasa - Sadhana "" - There is more than one way up the mountain!
Peace and Love ~