Insominia

Hi all,

Well it's almost 1 AM and I can't sleep. This new drug I'm taking causes insominia, and boy do I ever have it. I normally sleep anywhere between 12-15 hours a day. Since starting the Benylsta I'm lucky if I'm getting 6 hours.

I'm really having a ton of pain in my back, shoulders, and joints. I am currently sitting at a solid 8 out of 10. I have been so stressed over this storm Sandy. My 19 year old daughter chose to ride out the storm in her dorm room at UD, she is in Newark, DE. The eye of the storm went right over her. The Mom in me was worried sick. She's my only child and well you know.........

Of course, last night when I went into our formal living room, which we rarely use, to close the drapes, I looked up, and we have about 4 wet patches on the ceiling. We had to call the landlord last night. Not sure when things will be fixed, so more stress on top of everything else.

I will have a long day tomorrow too. I will be going in to get my second infusion of Benylsta. The Benylsta group I belong to have said the 2nd infusion is the worst. Sure hoping I don't have issues like I did 2 weeks ago.

I did have my appointment with a renowned Dermatologist at the University of Maryland Medical Center. I learned of him from seeing a show on either TLC or Discovery Health. Two shows were on him helping two different men in Asia, one was known as Dede The Tree Man, and the other was known as the Bubble Man. If you google Dede you can see how terrible he had warts. I've nothing like his, but I still have issues.

I have issues with warts on my thumbs. They have become so bad my left thumb looks terrible and the right isn't to far behind it. I am at the point I want them to remove my thumbs at the first digit. The military docs I see have exhausted all treatments and didn't know what to do.

So my Dr sent an email to this Dermatologist, and he agreed to see me. My appointment went really well and the Dr was so nice. He assured me he has ideas for me. I'll give an update later about his options. He did say that my problem with the warts are due to the fact I have NO immune system and just can't fight off the virus.

I am so embarrassed of my hands, and then adding on top of that my bruised and thin skin from my steroid use and blood thinners, I hate to go out in public. I also have all the classic side effects from being on high dose steroids for almost 12 years. He did assure me that I WILL NOT give them to someone else. I think I kinda already knew that as I've had the warts for many years now.

Well, I guess I will put on some lidocaine patches and try to sleep. I have to be up at 6 AM to catch the shuttle bus to the hospital. Because I have to have IV Benadryl I'm not allowed to drive. My hubby will have to drive down and pick me up. They WILL NOT allow me to ride the shuttle home, I have to have a chaperone. As this drug can cause a serious allergic reaction the day of or the day after, and it has resulted in death with a patient.

Hugs,
Barbara

I've had sleep problems since I was a kid. Never could get to sleep easily. Now with the pain it's that much harder. I'm taking 20mg of Ambien, an outrageous amount (50mg) of melatonin (Dr knows about, does not like it, but he knows about it), and I get drowsy, then sleep 3-4 hours, and the pain wakes me up again. Ambien is fast acting, and is out of your system in about 4 hours.

I used to look forward to getting my steroid epidurals, because they put me completely under, and that was the only time I was out cold and totally relaxed, even if it was only for a short while.

Insomnia and I are old buddies, even before the pain thing. 6 hours for me is extremely rare, much less 8. Add any kind of stress to that, and I've had plenty of completely sleepless nights. I get 2 or 3 hours at a time when I can during the day, but that's about it.