Tuesday, November 1, 2011

My REAL life

I've had a rough couple of days. Really rough. In fact, today would probably be in the running for one of the worst pain days I've ever had. I think I know what set me off.

It all started last Friday. I had my mammogram and before I even left the building I could feel my neck starting to act up. It had still been bothering me with the partial dislocations and spasms, but they were starting to ease up. After the mammogram, I had an appointment with my PCP. And, after he examined my neck ("Does this hurt?" Twist, turn, nod, poke....) it really, really hurt. So, his diagnosis was that I was losing the curve in my neck. Why not? I've lost nearly all of my other curves! I was in so much pain that I didn't really catch everything that he told me. I think the muscles tighten up and spasm which causes the pain. And, it can be due to the EDS's affect on the connective tissues. He prescribed a ton of medicine and wants me to start physical therapy. I guess my neck just got moved to the front of the line and the other body parts will have to wait their turn for therapy.

In addition to the neck, we talked about other things. I brought the letter from Dr. Tinkle explaining my diagnosis, along with a print out about my type of EDS that I found from the National Institute of Health. He was very receptive and said he would read whatever I brought him. I feel so blessed to have him for a doctor! Anyway, he referred me to a cardiologist for an echocardiagram; this is to check for the heart issues that EDSers can have. We discussed my medications and I asked him about prescribing more Lortab. I do still have some left from the prescription I got last March when I hurt my back, but I seem to be needing them more and more. My prescription from the back injury was 15 pills and I've probably only taken half of them. I was so, so relieved when he said no problem and wrote me out a prescription. I've tried to impress upon him how I hate taking pills, so I think he gets that I wont abuse them. And, I also think he understands the kind of pain I'm in. He wants me to start taking muscle relaxers too. I think it's to help more with my neck, but I know it will help my overall body spasms. I have to say, I am so glad that he is willing to prescribe the medicines I need. Especially the pain meds. I have friends who have to fight for their pain medications. It's so sad and so not fair.

Yesterday, I went to the dentist for what I thought would be a filling. It turned out, it was just a chip off of an old filling. So, I just had to have it bonded! Yay! No Novocaine. It usually takes 4 or 5 shots to get me numbed up (one of the side effects of EDS). While I was happy I didn't have to have a filling, I still had a rough time with the bonding. I don't think it lasted much more than 10 minutes, but in that length of time, it set off my TMJ (jaw joints). Oh my, the pain! My jaw is also stiff and it's very hard, and tiring, to chew. Today, it seems to be a bit better, at least until I try and chew. Hey, maybe I'll get some more of those pounds off now!!

We had our annual neighborhood Halloween party Saturday night and I was just too sick to go. I really enjoy talking to everyone and, of course, I love eating all of the good food!! I thought about just walking down there for a few minutes, but I wasn't even up to that. I'm sure most of them have no idea of how sick I really am. Not that that matters, but I guess I just don't want them to think I'm stuck up and anti social; because, I'm not. I love going to parties and throwing parties. At least I did before I got sick. Now, it's just too much work. Plus, there's the chance that I might not feel well enough come party time....which can be a real bummer when you're the one throwing the party. I remember New Year's Eve 1999 (this was way before I got sick). We had this big party and I had the flu!! I spent most of it in bed. I did venture down stairs every so often, much to the dismay of our guests. Several of them ended up with the flu. My bad. Well, it was 1999 after all and we had to PARTAY!

I have done way too much today and I'm feeling it. I'm still not good about pacing. I had planned on today being a low-key day. I have so many phone calls to make, paper work to do, etc. But, for some reason I decided to vacuum, do laundry and sweep (could explain my increase in pain, ya think?). What was I thinking??? I guess I just want to be normal!! Well, as normal as I can be. I get scared when I start to feel so bad. I think the intense pain sets off my autonomic nervous system and everything goes into high gear. My heart rate speeds up, I get anxious, my mind races, and I get fearful. I suppose if I did a better job of pacing myself and keeping my pain under control, I wouldn't have to experience these episodes.

Well, I need to go chop up some vegetables for the stew. We are having beef stew, salad, chunky applesauce and french bread for dinner. Yummy!

Have a happy 1/1/11



  1. Thanks for the update Shari! We posted similar blogs at almost the exact same time! I hope you are feeling better...and so happy that you are more open to taking pain medication...it is so necessary!

  2. Hi Cathy! I went and read your blog; I'm sorry you are having a bad time too. I am thankful that I can take the pain meds now. I seem to need them more and more.

    Love you!