I've had this blog post started for about 3 weeks now, but I've just been so busy lately I haven't been able to complete it. You know its bad when Dan is starting to give me grief because its not updated yet. LOL
My mind is swimming in a pool of emotions and thoughts. As always I find they leave easier when I get them out in writing. So you would of thought I would have stepped it up to get it finished. Even Danny's Rehab Dr recommends to get it all out on paper that way it's there in black n white and I don't have to continue to "think" about. I guess I'm on overload which means I'm overwhelmed and really not sure where to begin or finish in this case. It's really awful when you can NOT sleep as your mind is just racing in every which direction. I can be physically and emotionally exhausted but my brain just won't shut off, I find I am yelling and screaming with myself to GO TO BED....Turn it OFF!
I thought I was once again in a MS rut, but through many Dr appts they believe I am having a Fibromyalgia flair up. I have never had one before and I've never felt this way before.... it's awful. I was/am excited to start the new avenues of doing Feldenkrais and all the therapies of OT n PT to improve my awareness n balance, but with this being said I'm very disappointed that I hurt THIS bad. Right now I feel as if it's all making me worse and I'm down right frustrated. I wasn't sure if I hurt because doing it and my body needs to adjust, doing it too much, doing it wrong, shouldn't be doing it, ~ again this is all new so I will give it time....but was so hoping that my body n mind was going to be as excited as I am.
I'm very saddened, hell I'm angry that I can't even bake Christmas cookies with my family without hurting like crazy. It's just not fair.....I could see hurting like this if I was lifting weights, running a marathon, something crazy like that....not just doing everyday stuff like walking, or holding onto a basket of clothes, or lifting my arms to brush my hair.
Is this really what I'm going to endure the rest of my life??
Am I going to hurt like this everyday?? Man it's going to be a long one if that's the case. I'm trying some new meds n things to find some relief, but I really haven't seen to much of an improvement plus that to comes with it's own set of issues. Feeing run down and tired is one thing, but to hurt all day, every day, with every move ~ it just pisses me off. I'm so upset that I can't be the woman I want to/use to be. My biggest hurdle to is pace myself but I'm not very good at pacing myself or sitting back on the sidelines. So this will be a BIG adjustment for me. I am trying :( I am going to really enjoy our family trip to Dallas as I hope then I will be able to sit back and relax in the RV and see if my body improves with some much needed down time.
A person can hope!?!
I'm sure the added stress of Danny's upcoming surgeries is not helping either. We've done many pre-op appts, first was with the Orthopedic surgeon to go over any questions n concerns about the back fusion. Let me tell you I talked and talked and talked till I was blue in the face with the Dr and also with Palliative Care and the Rehab/Special Needs Dr to make sure I got all of the info I NEEDED to make sure I am making the right decision. What ever happens good, bad or indifferent I can honestly say YES I believe the fusion is the best route to go for Danny. BUT it still doesn't make it an easy decision. Like I told the Dr's I wish it was February and I can look back and say it's over with and I'm glad it's all OVER WITH. In due time, In due time. Today's appts were with the Anesthesia team and the NeuroSurgeon that will be doing his Baclofen pump replacement a 3 days after the back fusion. Unfortunately the two surgeries can not be done together, but believe me I tried my best to push for it. I am very grateful that I was able to get the Dr's to do a med change and then admit him the nite before surgery for observation as we need to be at the hospital at 6am for this surgery to start at 7:30am. With those early times I don't think I would be able to get much sleep as we live about 1.5hrs away (if traffic and weather are good) and I need to do all his respiratory treatments before we leave as I'm sure he won't be getting Mr Jiggles any time soon after the back fusion. He really needs to be "cleaned" out before a surgery of this length and magnitude. I could go the nite before and stay at the Ronald McDonald house or a Hotel, but then I would need to bring ALL of his machines along with. I would be doing all the moving myself as Dan is planning on coming later in the AM after Avrianna goes to school. Which means I would have to leave Danny unattended to get ALL his machines ie: Mr jiggles, vent, cough assist, neb, feeding pump, along with our bags in and then out of the room. I would do it if I had to but they both are not the best options for us, so them being able to admit him the nite before has made me a VERY happy Momma. One less thing I have to worry about, lord knows I have enough to worry about.
Two Sunday's ago Dan, myself, and Avrianna started going to a new church. I have to stay it's very nice and not to mention it's alot closer, YAY! I've been with our "old" church forever (I was baptized there, got married there, and the kids were baptized there), but there is alot going on there that I'm not impressed with so.....we switched. I'm not BIG on the church thing as most of you know, but for Avrianna's sake I will go. I would like her to get educated on religion so she can make her own choices. I owe that to her, and who knows.....maybe....let's just say I will keep an open mind about it.
Avrianna is now a certified Babysitter. She took an all day class a few weeks ago at the YMCA and she is very eager to start her "career". She already got to watch one lil girl and she just loved it. She's even more excited I started a FB page for her babysitting. This week we had Avrianna's Christmas concert and she was in a speaking part of the play. She did fantastic! Spoke very clear and loud, she wasn't scared on bit. Looks like she got the beginnings of being in Drama.