Where to begin? Well, this not-so-fantastic voyage began about 9 years ago when I was in my early 30's with a small preschooler and lots of plans. I'm sure it's a familiar story -- swollen hands and Raynaud's. All my plans were forgotten, and replaced with a new plan: staying alive. My official diagnosis was UCTD for a few years, then CREST, and now my rheumatologist just simply calls it scleroderma without really specifying anything else.
My complete blood count (CBC), metabolic profile, erythrocyte sedimentation rate (sed) rate, complements have always been normal. The only thing that's ever been wrong on bloodwork is ANA and SCL 70. My main issues over the years have been thick skin on fingers and toes -- not really obvious to the untrained eye, facial changes (the WORST! -- who IS that in the mirror?), Raynaud's, salt and pepper skin changes. I've had some other odd things come and go, like episodes of really frequent premature ventricular contractions (PVC) and tachycardia. So far (knock on wood) no organ damage has been found. Oh, I also have had osteopenia, and took Reclast infusions to fix that. Once I got used to my new reality, life was pretty normal and stable for several years. Scleroderma was always there in the background, though. It informed (and still informs) every single decision of my life.
This past summer, I began having some health problems. It's very difficult to talk about because of their personal nature. Let me just say -- ladies, be vigilant with your yearly check-ups. When your immune system is busy doing this crazy job it THINKS it's supposed to be doing, other latent issues may pop up. The scleroderma is like a diversion sometimes. So, I had/have problems -- the OBGYN says it's "multi-factorial". The only risk factor I could see at the time was possibly a suppressed immune system. So, I quit taking my meds, including Plaquenil. As I mentioned in the Plaquenil thread, this didn't work out so well for me :) I realize that the Plaquenil is a modifier, rather than a suppressor. However, when certain parts of our bodies are under attack, one can lose their ability to think rationally.
When I tried to discuss my issues with my rheumatologist, I used the euphemism "lady parts" :) He made a joke about it; this was my last appointment. He's kind of an idiot anyways, so this was the last straw. I'm now seeing a new rheumatologist. I'm on double the Plaquenil as before. I'm trying Losartan for the Raynaud's. It does seem to be helping, although not as well as the first few days. I'm about to try a new medication for sicca, but that's probably another thread.
Mentally/emotionally I am a wreck lately. As I said before, I should feel grateful that I'm doing reasonably well, as compared with many. However, the little things really pile up and wear me down. I know that everyone gets styes or eye infections from time to time. Everyone gets painful places from time to time. Everyone's face changes with aging. All ladies get lady issues. It's having finger ulcers, styes, corneal erosions, candida of multiple areas, plus the knowledge that all my issues are chronic and likely to recur over and over again...I just get tired of taking care of myself. Slathering on lotions and ointments and compresses and antibiotics. I'm the type of person who doesn't even like to fix my hair or wear make-up -- very low maintenance -- so all this self-attention is awful. I had maybe cried 2 or 3 times in the past 8 years before things went south. Now, all it takes is a kind attitude and I'm liable to start blubbering. You know that feeling? When you're just right on the edge of crying? I'm not sure whether it's scleroderma-related depression or if it's just situational. I mean --- isn't it reasonable to feel sad when you feel so crummy? When I was little, I always cried at the beginning of an illness. That's how my mom always knew I'd be home from school the next day. It probably doesn't help that peri-menopause seems to have begun. Oh, the humanity!!!!! At least the PMS hot flashes are cozy :)
Yuck, all I've done is talk about my illness! I've been determined not to let sclero define me, but when you're going through a tough spell, that is extremely difficult. I've even told a few people in my social network that I have sclero. Generally speaking, I've tried to keep it -- not exactly secret, but just not mentioned. I told people early on, but I felt like it made them uncomfortable. It's like most people are unsettled by the knowledge that something like this exists and is outside their control. I admit, it's a creepy sounding disease when you describe it to people. Like something created by a mad scientist. However, not telling people makes me feel like I'm hiding something. At this point, I'll talk about it a little bit to people who feel safe. My attitude is changing to "get over it".
Okay. I have probably over-introduced myself. Thanks for the welcome. I look forward to visiting here if you'll still have me after this neurotic rant.