For the past several months, my health has been deteriorating. Back in late July, I noticed that I was waking up with joint pain. My fingers, shoulders and knees would feel achy and tight. At first I thought it was my workouts taking a toll on my joints, but then why would my fingers hurt? I dismissed it for a few weeks until one morning I couldn’t get out of bed and had to go the the emergency room. After some testing and several specialists later, I still don’t have a concrete answer to what’s wrong, but it’s definitely auto-immune, possibly Lupus or Rheumatoid Arthritis.
It will still be several months, maybe even a year, before I can get a concrete diagnosis, and while I’ve come to terms (on most days) with the reality that I may have a possibly debilitating, incurable, although manageable illness, what has been a major eye-opener through it all is how the people in my life are dealing with the news…and with me. My boyfriend is in a bit of denial, just telling me over and over that everything will be fine. My daughter doesn’t even really talk about it, which I totally understand. My friends have been super supportive and have been a great source for venting.
I wrote this back in September and saved is a draft. I now know it’s Lupus, I was finally diagnosed a couple of weeks ago. It was extremely upsetting to know that I have this illness, but there was also relief, as I finally know what I have, what has been ailing me these past few months, that I’m not crazy, lazy, over-dramatic, or just out of shape.
I had alot of support during this time, and since the diagnosis. My friends and family have been great, and I’m blessed and very grateful that I have a great support system, a wonderful doctor, health insurance, and that I can afford my meds. I know this is a luxury that some don’t have. I now know that I’ve had this illness for years. Looking back, there were small symptoms and signs that I ignored. Lupus is very tricky, and doesn’t affect everyone the same way, which is why it takes years for even doctors to figure it out.
I have days that I’m upbeat, positive and doing great. Then there are days that I’m scared, wondering if this disease will kill me, and if so, when. Wondering how much time do I have, whether I’ll suffer from mild or severe flares, flares where I’ll be hospitalized for days or weeks. Wondering if I’ll lose my job, and with it, the health insurance. Then I go back to having good days. Days where all I can do is put one foot in front of the other, one day at a time. I really appreciate the days where I feel good and pain-free, where I can get out of bed and walk and go to work. Those days are now a blessing.
The medications have some shitty side effects, which suck almost as much as the Lupus itself, but I know that I have to take them to avoid flares. I also have to rest, relax and take care of myself, which is harder than remembering to take the meds. Like most people, I have a stressful job, I’m a mom to a teenager, and a slew of other things we all have to deal with that make it difficult to “just take it easy”. But again, to avoid a flare, I have to do my best.
I wasn’t sure about posting this, only because I haven’t been very personal on this blog, and I don’t want people to assume I’m looking for pity or attention. I just remember how many of you have messaged me in the past, telling me how you loved the blog and the message and that it made you feel better about yourself, so I thought that maybe there’s someone out there going through this, with Lupus or another type of illness, and maybe this would help them see that they are not alone, and that, as hard as it is, you have to keep going.
I have to keep going.