Thursday, November 17, 2011

One step closer to a more concise treatment plan.

So, the wonky spot on my hand is Morphea.  A localized form of scleroderma.  For now, I'm to use the meds he prescribed for the dishydrotic eczema on my feet.  I follow up with my rheumy after finals next month.

My feet are starting to feel better, as far as the eczema goes.  The cracks have healed.

I'd been fighting some kind of bug, but apparently am over it as of today.  I woke up feeling wrecked, my joints hadn't really hurt in about 5 days.  A small part of me was hoping that maybe my immunosuppressants were actually starting to work . . . .  The only real symptom was feeling run down. Which is normal for me, but this was run down with minimal joint pain. .. . . .

Nope, my immune system just had something else to focus on besides attacking my body.

Now I just have to wait and see what the rheumy wants to do . . . .

Sunday, November 13, 2011

Dermatology Appointment

I saw dermatology this week.  They've performed a biopsy on the wonky patch of skin on my hand.  It hasn't even bee there for a month, so it is hard to tell what is going on.  Slight possibility it could be morphea, which is a form of limited scleroderma. I was also diagnoses with dishidrotic eczema on my feet. I am a walking conglomeration of autoimmune labels, BUT I am walking!!!!

As many autoimmune patients know, it is not uncommon for there to be an overlap of conditions.  In fact, many of these conditions start with similar symptoms: diffuse joint pain, fatigue, etc.

I read an article yesterday.  Should've saved the link. That discussed that managing an autoimmune condition is a team approach.  Which is how my new rheumy is treating me.  The author said, a rheumatologist may feel that the patient is doing well and may even be considered to be in "medically induced remission" (what we all strive for!).  However, if that same patient is seen by their ophthamologist, the ophtho may notice changes (sclerosis of the cornea for example, but the list is nearly endless) that will indicate the complete opposite.  In fact, the author even said, if the previously stated situation is noted, the patient needs to be treated more aggressively.  If not, they may find that in 3 to 6 months their health mat decline significantly.

Now, while this is just one article, with just one author.  If is not the first time that I have heard of the team approach, it is just the first time that I have heard it described in such distinct detail.  It is definitely worth looking into.

Don't let yourself down.  If you feel something needs to be evaluated further or that you need another opinion, get it.  You may find that everything is okay, but at least you know for sure!!!

Thursday, October 27, 2011

Coping with Fatigue

While this article was written specifically for Rheumatoid Arthritis patients, the author openly admits that it can apply to many other chronic conditions.  Just as The Spoon Theory, while written for Lupus, applies to the rest of us as well.

These conditions make us balance our priorities.  That isn't necessarily a bad thing.

Sunday, October 16, 2011

So now I may not even have SAPHO

I went for a second opinion with a different hospital system.  The one that wouldn't treat my musculoskeletal pain, but that has since been resolved (by the system that did treat me and also discovered my autoimmune condition).
I tried to get in with their regional(neighborhood) health center, but was told that they don't treat SAPHO so I had to go to main campus to their Rheumatology Institute.  My new doctor is wonderful, she is a rheumatology fellow and her mentor is very kind and well accredited rheumy.  They got me in in two days, sure beats waiting three months to see my original rheumy!

They ran different labs and repeated some old ones.
  My level of inflammation is down significantly, but symptomatically, I don't feel it.  So maybe the DMARDs are helping.
I had a bone scan last Thursday, to confirm or deny SAPHO and to see if they can get a better idea of what is going on.

It's rainy today and I'm feeling it.  want to sleep, but gotta get some of this stuff done!

Monday, September 5, 2011

So tired!

It's a holiday weekend, it's winding down and I over did it.  Friday night I recouped from my week, picked up Chinese food on my way home and vegged with my hubby.  I was asleep by 10:30p.  Saturday, we went to a friends house for a poker game.  I don't play, but my hubby does.  I took some homework and worked on that for a bit, chit chatted and just hung out.  Stayed up til 3 am, by the time we got home.
Yesterday we had a business meeting, lasted longer than expected, but I got to chat with another lady who has an undiagnosed  autoimmune condition.  It's nice to meet someone else face to face who knows exactly what you're going through.  On our way home, we stopped at our friends' house (where the poker game took place) because I had left a few things there.  Ended up chit chatting for way to long, but it was great to spend time. 

Last night wasn't asleep until 4am. Ugh.  I am so frustrated that I cannot physically handle, what feels like anything, anymore.  So tired of being tired. Blah!!!

Sunday, August 28, 2011

Can't Sleep

I must admit, I'm laying in bed writing from my phone.
I'm excited to start classes tomorrow! Cell Bio, Chemistry, Anatomy & Physiology I, Native American Lit.
I adore learning.
This will be my first semester at this university. Last year, when I first started back to school, I took classes at a community college to save $$$$.
I am also nervous. Will I be able to find a close enough parking space. Will my pain meds be enough to get me through the day.  I have been having a lot of trouble walking this past week, it's been very painful.
These are things I didn't have to worry about 15 years ago when I went for my first degree.
And then there are the financial concerns that go with being a student at any point in life.  I really need to get a part time job on campus. I had an interview for one last week and have been asked for more info for two others in the last few weeks.
While I am licensed to do a job that pays much more. It would be easier to have something where I don't have to travel further. Sometimes the energy that that takes, takes it all out of me.
I really want to try a different line of meds. I need my energy back. I need to live my life!

MyLot . . .

So as you already know, I am a full time student.
What are full time students?  POOR, of course!!!  Especially when a lot of your $$$$ goes to meds and devices to aid in your comfort and success (like my new Olympus WM-710 Digital Voice Recorder!!!).

MyLot is a way to make a few extra bucks a month! Check it out:
myLot User Profile

How do you make it every day with an autoimmune disease?

I have been battling an autoimmune condition related to Ankylosing Spondylitis, called SAPHO Syndrome, for over a year.  I have been on a DMARD (Disease Modifying Anti-Rheumatic Drugs), Sulfasalazine, since May.  DMARD's take a while to work, as in 4 to 6 months to know if they are truly going to help.

At the 6 to 8 week window, I started having more energy, but it did not decrease my daily pain.

I found some helpful information at, but the Experience Project was a bust.  They have some interesting posts, but interacting has been impossible to get involved in.

It's a daily thing.  I find it hard to plan too much in advance because I don't know what my pain will be like.

On top of that, I am a wife, a stepmom, full time student and an aquarist.  It is hard to get everything done without overdoing it and knocking yourself down for several days.

This week I have had a lot of trouble walking.  My doctor gave me a script for a handicap placard for times like this, it is embarrassing to use, but it helps.

Please know that you are not alone in your battle to be everything you were before autoimmune disease knocked you down.  There is strength in numbers and we can support each other!!!