Sometimes I Forget

Sometimes, I almost forget that I have chronic illnesses. I hang out with people who think of me as healthy or who know but forget, and I don't remember my reality until I get home or until I'm asked to do something I'm physically incapable of. The worst thing lately is the decision to not kneel at Mass or to have my kneecaps slip so far out of place that I limp to communion. Once in a while, I am ok to kneel. I was a few weeks ago, but I tried it theses last two weeks, and it was a bad move. I don't want to have these limits, but I can only change so much.

Getting out makes me feel better

There's nothing like spending time with friends to take my mind off of my illnesses (ok, well, church does that too).

Back When Dancing Felt Good

I remember that perefct summer when Ewa and I would go swing dancing at Sonar. I weighed about 124 lb at the end of that summer (smaller than the size 8 I had been before). I haven't felt that healthy since. I often think if I could only go back to dancing, I would be healthier. I miss it. Maybe I also miss that last summer of hope, since I knew it would be the last like it. The summer of 2003. Has it really been three years ago? It has. The hopes that were dashed after that summer were purely of the emotional type, and I saw it coming months before it did. I can't go back to that, but can I go back to that feeling where my body functioned almost normally? Can I recapture the feeling of going through the air without a care in the world?



I wish I knew. I really don't know anymore. I'm not as healthy as I was then. My knees and ankles are more damaged. But could I do it again if I wanted it bad enough? Maybe someday soon I will find out. Or maybe I won't. Time alone will tell.

Finally feeling a bit better

I think my mini-flare is just about over. I didn't eat too much today: two meals, some cottage cheese, and one cookie.

Sleepless in Baltimore

Having only slept two hours, I can certainly say that a good amount of sleep each night is necessary for coping with a chronic illness.

The RunDown

Told I had JRA as a child (but not treated, told I would outgrow it)
Was an active adolescent despite that (soccer, field hockey, lacrosse, long walks, dumbbell exercises, etc)
Felt ok at 16 (assumed it really did go away)
Started suffering bad fatigue at 17 and noticed that taking showers hurt my skin bad (my mother assumed I was making that up and I was just lazy)
Had a severe reaction to a tetanus vaccine right before my 20th birthday
Had my impacted wisdom teeth cut out right after my 20th birthday, swelled up more than most people and bruised all the way down my neck)
Kept feeling like I had a virus coming on (though it wasn't)
Began to mention strange symptoms to drs (who at first brushed it off)
Was sent from specialist to specialist with no conclusions drawn
Began to be so sick that I was in and out of ERs
Lower abdomen swelled up suddenly one night (and never deflated)
Began to get rashes
Began to experience tight feeling above lip and in hands (which is how I got the uctd with scleroderma-like symptoms diagnosis at 22)

Well, that's the basics. Eventually I wound up going to the best rheumatologist in the world (three cheers for Dr Wigley).

Besides the illnesses I mentioned in my last blog, I have hypothyroidism, hypoglycemia, hypotension, postural orthostatic tachycardia syndrome, Raynaud's, GERD, IBS, plantar fasciitis, edema, ulcers (though they've healed), some rashes (eczema and other types), asthma, etc

Yes I Am Sick

I have two autoimmune connective tissue diseases: undifferentiated connective tissue disease and Sjogren's. I have a genetic connective tissue problem that is similar to Ehlors-Danlos, but it's not so clear cut. Let's say there's a continuum of people who are genetically predisposed to overly soft connective tissue. At one end are the healthy people and at the other end are those with full-blown EDS. I fall towards the unhealthy end, though I fall short of the clinical definition of EDS, though sometimes you may hear me refer to it as having an extremely mild case of EDS, which is what I think is actually going on. I also have fibromyalgia. In addition, I have many conditions that are secondary to my illnesse. This blog is about being sick but being alive and surviving. You can also view my other blogs by clicking on my profile. I keep a blog for different topics.