It has been almost 3 weeks since my last post, but with the holidays and my CRPS flaring up most days lately, my blog has sort of been on the back-burner. Let me say that I hope everyone had a great Christmas / Hanukkah & a wonderful New Year! I certainly did despite my normal pain. This year things were a little different in my family, but still so much fun! And the best gift I received this year on December 27th, was the birth of my second niece! I'm so smitten with babies and was overjoyed for this new life to join our family! Kids really are the best medicine for me and I'm grateful my husband's family is enormous & has so many! Needless to say, we've been busy & on the go a lot. I have loved getting out of the house, but since the end of my SCS trial, I knew it was a matter of time before it would all catch up to me.
Thursday, January 5th, I ended up in the hospital ER again. The pain was so terrible I couldn't even stand up at all. I had been bed-ridden for the past week with such severe pain & by Thursday I just couldn't take it anymore. I feel like my breaking point / threshold for pain has gotten quite strong, but it finally broke. I'd been pushing myself so hard for weeks now not to go to the hospital ER, but I am very happy I went this last time. I'm sure I'm not alone in feeling like when I go to the ER, people look at me like I'm faking or crazy. For the first time in 2 years, I didn't feel that way Thursday. It was the quickest I'd ever been given a room and by the time the doctor came in, my morphine was already called in. The doctor was so sweet & understanding as well. Could this be a change in the hospital system or even better, a better understanding of CRPS by staff? Either way, I was happy. I also feel that due to my many visits to this same facility & previous calls made from there to my doctors, that there are now notes in my chart stating I am to be given morphine quickly. It seriously helps to have your doctors work with whichever facilities you frequent so there is no question about your disease or your needed treatments. I wish it didn't take a dozen ER visits for that to happen, but I'll take it. I had two doses of morphine with Benedryl as I'm allergic to opioids via IV. I went home a couple hours later feeling so much better. It didn't take everything away, but my pain was down to a "2" from a "10". Earlier that day I saw my rheumatologist & he put me on morphine pills twice a day now to help with the pain. By that night though, I truly felt like I was dying & I just wanted to cut my legs off.
It's hard to explain to a normal person just how much pain CRPS causes. Sure, I can tell you about the basic throbbing, stabbing, tingling feelings, but it's really so much worse than that. I try to describe the pain to my husband often, but how do you convey an "invisible" pain that leaves you unable to bear any weight on your legs or wear any clothes because the slightest brush against your limb causes unimaginable pain? I've now had to pad my side of the bed with a down comforter for extra softness because it hurts to lie on either side or my back. I'll fall asleep, end up on my left side & wake up crying because it hurts so bad. I can't sit on a regular chair anymore without a pillow as my CRPS affects my derriere too. I've even torn the rotator cuff in my left arm a little due to overcompensating for my lack of leg strength. I have to use my walker around the house when I'm actually not in bed now. My favorite though is the stares I get when I do go out, even to the grocery store, in my wheelchair. That never ceases to amaze me! A few people are lucky they haven't been punched by my husband actually. I understand an occasional glance by someone, especially children, but a stare that last minutes? Even when I look right back at you?! Has society no common decency? We were at a well known electronic store one day, waiting in line to check out. The lady in front of us turned around, about 5 feet in front of us, while her husband was paying, and just stared at me. I don't know what she was thinking but I really couldn't believe how rude a person could be. I can imagine her thinking "there's nothing wrong with her, why the wheelchair?" My husband was so irate over this & in order to not cause a big scene, he made sure he caught her glare & simply stared back. My hubby is 6'4'' and a big guy. It would be hard to not be intimidated by his "serious" face unless like me, you know he's a teddy bear! Needless to say, her stare then stopped. I already know I don't appear "sick" or "disabled", but what happened to the phrase "don't judge a book by it's cover"? I guess some things never change, even with time.
That last rant of a paragraph felt good to get out, lol. Normally I don't let that sort of thing bother me, but you know what? This is MY blog & I can rant about anything I want! Lol. So aside from the ER visit, I have some other pertinent news... I have scheduled my second SCS trial for Tuesday, January 17th. Yay! (I hope). If you've kept up with my first trial, you might wonder how I can be so optimistic about this one. The answer is simple- how can I not be? I have nothing to lose and only harder decisions to make about other treatments. This HAS to work. I believe with all of my heart that faith has led me here to this very moment, this very treatment. I have not given up and you know, if it pans out this doesn't work the second time, so be it. It's a part of God's plan for me & I trust His judgement. Every road takes you to something new and even when the scenery isn't so pretty, you'll find the breathtaking view ahead was worth every step on your path. It's the way of life & it makes you who you are. It hasn't been an easy journey, but I know one thing for sure. If one person with CRPS can say that I have helped them in any way, even if simply making them feel a bit more positive, then I'm ok with my disease. It means my suffering has helped someone else and that is enough for me. Imagine if that torch continued to be passed? Even with this disease, we can still bring a little hope and maybe a smile to each-others' lives.
Well, I'm hoping to not go as long without a post again, but we'll see. Lol. I want to start talking about CRPS more in depth and the details of a Spinal Cord Stimulator. I just need to get my thoughts together to come up with some good information! For now, thank you as always for reading & I would LOVE, love, love some feedback or advice of any kind! Remember, awareness starts with us! Don't sit back & wait for someone else to do all the work!
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