Good and Bad Times

My friend NL came to visit on Friday. She is such a wonderful person. She keeps me company until I need to lay down. We chat it up and just have the best time.

Well, she came bearing gifts from herself and another mutual friend. It felt like Christmas. Before she left, she helped me put everything away and placed the most gorgeous pink, luxurious robe (from the mutual friend) on the end of my bed. Gifts or no gifts, I truly enjoy time spent with friends.

Saturday, for some reason, I woke up with the worse pain in the back, that goes around to the chest, on the right side only. I have Dilaudid that I take for emergencies only but it's not helping at all. Not to mention, I'm still taking my regular medications. I should go to the ER but I'm so tired of the same routine. They give me an injection for pain, wait for it to take effect, then send me home. Once in a while, they might do an MRI and give me the status of my syrinx (if it's grown or shows no change).

Depending on the doctor in ER, they seem to take the lazy way out and just say the pain is from the syrinx. What if it's not? Simply giving me a shot and sending me home isn't finding the problem.

I can't even sleep through the night again. Although I still toss and turn in pain, since I've been on Lyrica, I just yell out from the intensity of the pain and then fall right back to sleep, once I change sides. Well, the last few nights, I haven't been able to just go right back to sleep. It's like a never ending nightmare.

Once I get into a, somewhat, comfortable position (in bed or in the wheelchair) if I move one inch, the pain is so excruciating that all I can do is yell out. It hurts to breathe in, talk or move. It came on so suddenly that I believe it could be related to the syrinx. That's normally how the SM symptoms present themselves, for me anyway. "All of a sudden a new symptom (or increase in existing symptoms) is there, no warning"!

I'll give it another day or so, if no better, I'll call the doctor's office and schedule an appointment. I'm just so sick of it all. It's a constant merry go round with SM symptoms, and with the doctors. When it gets this bad, I always say "I don't know how much more of this I can take". The bad part is that I am still having a problem with pain management, overall. So far, nothing has brought the pain level back down to the range between 5 - 7, so on top of this new type of pain, I'm still struggling with the pain level ranging between 7 - 9.

I know I can't give up and I will do whatever it takes to stay positive because I know that "this too shall pass". It's sad that all that really means is that I'll become adjusted to the level of pain I'm at. It's taking so long to get the pain under control that by the time the PM doctor gets it right, I'll have a new feeling of what level 10 feels like. I will survive by the Grace of GOD and lots of sleep.

I hope everyone has had a great weekend!