Thursday, April 29, 2010

Addicted to Yoga

I went to my first yoga class this morning and I'm happy to say I will be returning every Thursday from 10-11:30.  Yes, one class and I'm hooked.  

It was AWESOME and I don't know why I haven't done this sooner.  The instructor for today's class was awesome.  She said she is not the weekly instructor, so I'm a little bummed about that because she was great, but she assured me I'll like the instructor next week too.

Class was just the instructor, myself, and one other, older woman.  The instructor first asked me a few questions about myself and my limitations and then explained to us what the class would be like.  

I was excited right from the beginning.

We started doing some simple exercises and stretches while seated in a chair working our shoulders and spine and learning to focus on our breathing.

Then we moved to the floor.  The instructor helped me down and made the next exercises easy for me to do.  We used big pillow bolsters, a strap, and some blocks to assist me and support me in some of the exercises.  The instructor even rubbed my shoulders and did some reflexology on my feet through a couple of the poses!  She really did rock and I could have stayed there all day.

Class ended with a short meditation and I left leaving super relaxed, yet feeling and being very aware of the stretches that my body had just done.  

The class pushed me to DO something.  I've known that I needed to get moving and "the man" and I have discussed physical therapy in the past.  I've been to PT for different reasons, but never liked it and only ever gone for the required length of time for the specific ailment.  Physical therapy has always been boring and for people that have problems ... that's not me.  Yes, note the sarcastic look I'm giving myself.  

I've always thought, "I can just do it at home."  The problem is, just like regular exercise routines for regular people, they don't work if you don't actually do them.  

No matter how positive and kick Sclero's ass I've thought I've been ... that's it, I was just thinking about it.  Yes, thoughts and mind are a big part of the process.  So is just living and getting through every day.  I've been fighting with this and taking medications and going to appointments and doing all of the things I've needed to.  I have not slacked off there, but, I need to "do" more.

Some days just existing are a challenge, and with this current flare up, I'm evolving once again ... I've figured out how to exist and "live" with and shuffle the cards I've been dealt ... now it's time to "play" them.

In the Sclero world some patients and doctors adhere to the "use it or lose it" philosophy when it comes to muscle mass and tendons and thus the need for constant physical and other therapies...

Today I have become an active participant in that philosophy.

As I sit and write this, I can feel a pleasant soreness in certain muscles and and areas, but for the first time in a long time, this pain feels good.

Tuesday, April 27, 2010

Arthritis, & Tubal Ligation

As I look back on my last 8 years with Sclero, some of it has been a blur.

The winter of 2004/2005 is really when I started remember most everything.  It was the turning point thus far.  The disease and my life changed.  Building up to that a bunch of things began popping up here and there.

2003 and most of 2004 was all up and down.  I would feel bad, get a new drug and then feel good until the drug was no longer effective, then the cycle would start again.

During 2003 is when I developed the arthritic component of the disease.  I remember my dad came to visit for my birthday in May 2003 and we didn't go anywhere or do anything because I spent the entire time on my back on the sofa.  I was in constant pain, exhausted and literally could not move.  It could happen over night.  And then, with the right drugs, just as quickly, it could subside.  By the end of June 2003, we had started Prednisone and life was good.  I could move again!  I went for my annual "Girls Weekend at the Beach" with a friend and had a great time.  Just a month before I almost canceled because I was sure I'd never be able to get up down off of a beach towel.

Prednisone - another in my trusty bag of tried and true drugs.  It always seems to help.

However, my doctor never likes to leave me on Prednisone for too long, so we usually do short courses. They are usually enough to quiet things down.   By the fall of 2003 things were active again and we tried adding Methotrexate into the mix.  It had been successful with Sclero for years and had a good track record.   Most people take Methotrexate for years to help with the disease.

However, on Methotrexate you are not to get pregnant.  It causes birth defects and miscarriages.  Because of that and a whole myriad of other reasons my first husband and I decided that I should have my tubes tied.  So, in November of 2003, I had a tubal ligation.  Probably one of the easiest procedures I've ever had done.  I was in and out in just a short time and then spent the weekend at home feeling like I had done one too many crunches, without the rock hard abs to prove it.

I had no issues recovering from the procedure and the Methotrexate and Prednisone were really doing the trick.

I was feeling great and we saw 2003 out with a bang in Las Vegas.

Knowing is half the battle

My initial visit with Dr. Wigley was great.  He spent a lot of time with me.  Explained everything that could go on.  Even drew pictures for me.  I still have those pictures tucked away in my folder.

He explained what we might expect to see in the future.  He also told me that we might not see some of the issues.  The disease is different for every person and what affects one person might not affect me.

He also said that we would meet regularly and keep on top of things, in case anything DID arise.  He said we live in a day of wonderful medicine and technology and the treatments available were great compared to years before and that they were getting better all of the time.

I left with a stack of information, and his business card in hand, with an email address.  I was to contact him ASAP if anything changed in between visits.  What doctor does that?  The ones at the Johns Hopkins Scleroderma Center, that's who!  Anytime I email him, he responds within 24 hours ... sometimes within 2-4.  He has been there anytime I've needed him and if he was out of town, another doctor on his staff has been in touch with me or seen me as necessary.

I was very lucky to see Dr. Wigley so early in my disease.  Lucky to get the right diagnosis.  Until recently, there are women that have gone 15 or more years without a proper diagnosis.  I'm not kidding.  I'm also not talking about 1 - 2 women.  I'm talking bunches of women, being treated for Carpel Tunnel, or Lupus, or even being told there is nothing wrong with them .. all while their bodies deteriorate.  Crippling or killing them.  Far too early.

Not that Scleroderma doesn't still have those affects on people with proper diagnosis and good treatment.  It's a ruthless, obstinant disease that can laugh in the face of medicine and technology.  But it can also be knocked off its high horse and put into some sort of submission if treated at the right time, with the right medications and therapies.

Scleroderma sucks ass, I'm neer going to say that it doesn't.  But, I can't imagine going through this for 15 years without the right treatments.  Its hard enough WITH the right diagnosis!

But, I've learned since 2002, knowing IS really, half the battle.

As I'm closing this entry ..."We are the Champions" comes on the radio.

Sunday, April 25, 2010

Scleroderma - Initial diagnosis

I returned for the follow up visit with my doctor so we could discuss the blood tests.

I don't remember all of the blood tests and markers and such that we discussed.  I know I should, but that was in 2002, and now those specific names just aren't important anymore.  To some Sclero patients they are.  Not for me.  

I DO know that there isn't one specific test for Sclero.  I also know that I have a positive ANA and Scl-70.  Combined with my auto immune thyroid history, the recent development of Raynaud's, and my skin changes, the doctor was on the ball and said, "I think you have Scleroderma."  He admitted he had little to no experience with the disease, but referred me to a Rheumatologist that he thought would be able to help.

Ok.  Scleroderma?  What the heck is that?  I went home and did some light research on the web and didn't really find much.  I found out that it meant "hard skin," and yet seemed that it killed people.  I was confused!   The name of the disease really is a misnomer.   "Hard skin"?  Yet it could cause all of these other internal issues and kill people?  I was only having skin issues, I wasn't going to have these other problems, right?  What?  Huh?  How?  AGH!  Most of the stuff I WAS finding didn't give a good prognosis.  It was only 8 years ago, but at the time, there wasn't a ton of good information available and let me tell you, everything that WAS out there was horrible!  

I waited and got my appointment with Rheumatologist.  He was a very sweet man.  He ran the same blood tests, again, just to be sure and did a complete physical.  I spent a good 2 hours with him on my first visit.  Though I tried to be calm and relaxed, he knew this was not the case.  He sat and talked with me and explained everything in detail.  He really tried to put my fears aside.  Though, he admitted that at the time, it was documented that roughly only 300,000 people in the U.S. had this disease and that they really didn't know a lot about it.  That's not comforting, but he really was trying and had GREAT bedside manner.

He then went on to tell me that he was referring me to someone else.  A Rheumy at Johns Hopkins who specialized in Scleroderma and, in his opinion, one of the best in the world.

Relief!  I was going to see some who knew what they were doing!

Saturday, April 24, 2010

Raynaud's Phenomenon

After my thyroid issues, things were quiet and I was healthy for a few years.

In the fall of 2002, I started noticing that my hands would get unusually cold, blue, and go numb while I was at work. I was a computer geek as my day job, so I worked in areas where the temps are kept quite cool to maintain the servers and computer equipment. So, at first, I just dismissed it as, it's cold in here.

                                                         This is what a severe Raynaud's episode can look like

Then I noticed the skin on my fingers was hard and peeling really badly. Almost like a snake molting its skin. I had just returned from a week long trip to California and attributed the skin changes to going from our humid climate, to the desert, back to humidity.

I let this go on for a week or two more until my co-worker urged me to go get it checked out. My fingers would be REALLY blue at work and was kind of freaking people out.

So, I made an appointment with the good doc and was sure that he'd tell me there was nothing wrong me. I was sure I wouldn't have any evidence to show him of the blue fingers because it only seemed to happen at work. Well, we know how cold they keep those dang doctor's offices! By the time the doctor came in to see me, my fingers were nice and bluish-purple and all ready to be checked out.

He asked me what was going on and I gave him all my explanations while he looked at my hands. When I was done talking, he said "You have Raynaud's Phenomenon." He explained that when my body senses any amount of cold, it "freaks out" and closes the vessels in my fingers to keep the blood flowing to my core to protect my major organs. This can also happen in the toes, nose, and ear lobes.

Sometimes it can be a condition that occurs all by itself, called Primary Raynaud's. Other times, it can be secondary to another condition, usually one of a list of autoimmune diseases, if it is an underlying condition, then it is called Secondary Raynaud's.

Since I already had autoimmune thyroid disease, and the peeling and hardening factor in the skin on my fingertips, the doc thought it was a good idea to run a myriad of other tests to see if anything else is going on. He told me he thought I might have Scleroderma.

Who? What? Scler-a-huh?

At this appointment we didn't get into that just yet.  He wanted to get the test results first.

Friday, April 23, 2010

Thyroid disease

As I mentioned in a post on "LoJo's Life"... I was diagnosed with an autoimmune thyroid disease, called Hoshimoto's Thyroiditis when I was 20.

Shortly after my first marriage in 1997 I began to put on some extra weight, sleep all the time, my hair was falling out in gobs, I cried over everything, and would go months without a period.

I was constantly tired. More tired than I can even describe. I would sleep ALL the time. Literally. I would cry when the alarm went off at 6, because I didn't feel like I had slept. I would go to work and take naps in the bathroom every time I took a break. I would skip eating lunch and nap in my car. Heck, on weekends, when the supervisor's weren't there, I would go sleep behind the comms equipment.

On my drives home from work, I'm sure I must have slept at the wheel because there were days I would find myself at home and not remember how I got there. I would get home, take off my boots and outer BDU shirt and go right to sleep in the rest of my uniform. I'd wake up to make dinner and then fall asleep more on the sofa before going to bed at 9 or 10. I'd sleep soundly all night until the alarm went off in the morning and the cycle would start again.

I cried over everything. Prior to this, nothing would make me cry except my dad yelling at me. Now, everything set me off. I would cry from the time I got up until I left for work because putting my hair in a bun was impossible. It would take forever and take several tries because my hair would just fall out in gobs as I was trying to put it back, getting tangled in the brush, on my fingers, in the scrunchie. It was a mess!

I had written a report at work and it needed to be QC'd before being released. My supervisor looked it over, made his corrections in red and gave it back .... I made the corrections, sent the report and then went to the bathroom and cried for 15 minutes.

One night while I was laying on the sofa, the cat was bugging me and I pushed her away. My husband jokingly told me to be nice to the cat, that I had hurt her feelings. I sobbed for 45 minutes.

I started missing my periods. Prior to that, I was like clockwork. I was on the pill and would start on a specific Tuesday morning of every month. So, the first time I missed a period, we freaked out! I went and bought a home pregnancy, and it came back negative. Of course it did, I was sleeping all the time, when the heck did I have time or energy for baby making sex?

So, I went to sick call. Told them everything and their answer was, you're a newlywed, that must mean your pregnant. Let's do bloodwork. Negative.

This cycle went on ritually for about 9 months. No period, take a home pregnancy test, negative, sick call, bloodwork, negative ... rinse, lather, repeat. I finally went to the doctor's office, sat in her chair and through tears and sobs, demanded that Colonel Shreekemar (yes, I remember her name) figure out what was wrong with me and that I wasn't leaving until she did. It's a wonder I didn't get a stripe pulled or at least an LOR, but luckily she listened and did some more extensive bloodwork. That was the extent of her bedside manner! The test results came back, she told me, "you have an underactive thyroid", handed me a bottle of .025 mcg Synthroid, and said "make an appointment with an endocrinologist at Walter Reed." Ummm... ok. Now I know something is wrong with my thyroid, but that's it.

I got an appointment with a great guy at Walter Reed who sat down with me and told me that I had Hoshimoto's Disease. That my body was attacking my thyroid and explained to me everything about what was going on. That I would have to take thyroid replacement for the rest of my life and that I had to have bloodwork every 6 weeks until we got my thyroid levels (TSH) under control. One day, that would go down to once a year, but we had no idea when, that depended on my body.

He did find a lump on my thyroid so I had to have a biopsy done to make sure it wasn't cancerous, but it turned out to be just a goiter, the thyroid's reaction to being attacked. We did bloodwork every 6 weeks like clockwork and adjusted medicine up every time to try to get it just right.

In 1999, I got out of the AF, and had to get a civilian doc to continue the process. My new doctor got my medical records from the AF and in my initial visit with him, he shared with me what the Army doc had found, but never told me. At the time (standards have since changed) TSH levels were considered normal in the .5-11.0 range. My records showed that by the time the military finally checked my TSH ... it was 135! My new doc said that had they waited another 2 weeks, I could have slipped into a coma!

Today the range is even more narrow at .3-3.0.

My TSH is now monitored regularly and my dosage adjusted to .150mcg - a far cry from my original dosage!