I've already discussed how much I adore spring. The biggest two reasons why I love spring are 1) Winter is over and 2) SUMMER IS COMING!!! So you can imagine that I am totally in my element now that we are indisputably in summer. Almost uninterrupted for the past week, the sun has shone, everything is a beautiful, vibrant green, it has been warm to hot out, and the days are still gloriously long. Ahhh. I love it! I am so excited to go to the lake this weekend, and hopefully get out in the boat!
Otherwise, not much has changed lately. I am still waiting for my next rheum appointment and round of infusions. Fortunately, my rash has stabilized since my last half-treatment - it is still there a little bit on my left upper arm, the knuckles on my right hand, and my chest (oh and my eyelids and cheeks, but it never seems to get better there so I'm not sure if that counts). It is still better than what it was, and most importantly it hasn't been getting any worse. I've been trying to be careful about sun exposure, because that REALLY pisses off the rash, and so far I've been doing all right that way. My last dermatologist in Edmonton practically wanted me to wear a burqa whenever I went outside! I haven't adopted that strategy, but I am pretty neurotic about sunscreen and have lately started wearing hats as well. To keep from glowing in the dark, I have started using a sunless tanning moisturizer, which at least gives me a bit of color :)
I haven't noticed any muscle weakness thankfully, but my muscles have been quite stiff and tender to the touch lately, which is a bit worrisome. It is not bad enough yet to go back on the prednisone before my next appointment though! We'll see how the next few weeks go.
Now for the whine. Coincidentally, in my readings over the last couple of days, I have come across three new studies on Multiple Sclerosis. So many people in Canada, and unfortunately in Saskatchewan specifically, suffer from MS, so it is great that research is being done on this subject. One of the studies examined the effects of MS on pregnancy and birth outcomes, which is an important topic since MS tends to strike women around their childbearing years. It involved over 400 women with MS, and found that the disease does not seem to adversely impact the birth process or the health of the baby. Obviously, this is great news, and I am happy that research is being conducted to help women and families coping with a potentially devastating disease. However, I can't help being a bit envious. Because DM is so rare to begin with, and it tends to strike older women, there is next to no research on pregnancy and birth outcomes with this disease. The best study I have come across on this topic in DM looked at 7 patients, who obviously varied widely in terms of disease severity and the medications they were using. This is a highly relevant topic for me, as I am 28 years old and my hubby and I would like to have kids one day. I guess this just highlights one of my frustrations with this disease, and that is its rarity and obscurity. There is so little research being done, and perhaps rightly so when there are many more prevalent diseases like HIV, diabetes, and cancer that we have yet to beat. But it is just frustrating when you are coping with a rare disease - there is little hope of a cure or even novel treatments being found, because there is precious little money, resources and even patients for trials in DM.
I hope that doesn't sound wrong or selfish - I don't mean to imply we shouldn't be doing research on these other diseases, or that I begrudge the advances that are made! Quite the contrary, in fact; as a healthcare professional, as a fellow patient myself (and heck, as a human), I am always happy when medical research is able to find ways to alleviate suffering and improve the quality of life of people living with disease. And I certainly do not wish DM on more people so we can have better studies! I guess I just wish I didn't feel so alone in this fight sometimes, you know?
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