How to explain to others . . . .since outwardly we don't look sick.

Hands down, I still like the Spoon Theory, when trying to explain how you feel. Christine Miserandino's The Spoon Theory  This is a useful tool for many, as it can apply to nearly all "invisible" diseases: Fibromyalgia, Rheumatoid Arthritis, Psoriatic Arthritis, Chronic Depression, Lupus, Cancer, etc.  The list is longer than my hands will let me type.

I have a bumper sticker on my car from Zazzle.com, but cannot seem to find it . . . here's one, though Autoimmune Arthritis Awareness bumper sticker from the IAA Movement

I do have a handicapped placard, for use at school and if necessary while out and about.  I have gotten some pretty nasty looks from others, when I park there.  Keep in mind, if there is a non-handicapped spot close by, I will ALWAYS park there. So as to leave the handicapped spot available for someone who may not be as lucky to find a close spot when they need it.  My Bumper Sticker says, If you want to know why I am parking here, ASK.  I am not lazy, I have autoimmune arthritis.  Disability does not have an age requirement.  On good days, I park as far away from the door as possible; taking full advantage of my body allowing me to move without pain (or with little pain, since I am rarely pain free).

Zazzle also has some amusing shirts (note, I am not affiliated with any of these sites financially; I just find them helpful). My favorite is "Today my immune system attacked my own body.  What did yours do?"

It is really hard to explain to someone who really doesn't know anything about autoimmune conditions, how bad things can really be. 

The fact that you're exhausted, which is due to the overwhelming percentage of cytokines going through our blood stream (others feel this when they get the flu or a bad cold with a fever; it is a hallmark of the autoimmune response), without much activity.  Your low grade fever. My joints rarely swell, so it is really hard to tell outwardly that I feel like crap.

Couple this with not having a true diagnosis, or still waiting on a diagnosis, and you may find very few people who understand.  Some may not even believe you (I hope you never have to go through this).
There are so many support groups out there . . . I hope you find one that keep you up, when you are at the bottom . . . Have a great weekend.

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 . . . .

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!!!

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!!!

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 spondylitis.org, 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!!!