starting a new blog

I am going to be starting a new blog. This one will continue to be about everything that is going on with my medical stuff. New information, fumbling on my way to this new lifestyle until I find out there might be hope. I am getting the impression that this is a new lifestyle, a new normal so to speak. At times this is really getting to me. To look at this new life and really find the blessings but still vent out the frustrations.

neurosurgeon appointment

I did see my neurosurgeon today and it was less than stellar. I told him I am still having a lot of pain and problems with that and that the meds aren't cutting it but I am also tired of taking so much meds and he told me that there was a problem with my x-ray. Basically that when you normally bend several vertebra all move to create an arc. In my back it is almost all coming down to one joint and also that whereas your spinal cord is usually covered in 360 degrees mine is now exposed in 270 degrees. There aren't any nerves in the spinal cord so I wouldn't feel it there but the dura that surrounds it is pretty concentrated so it may also be a problem of scar tissue building up or even possibly both. I asked about going back to work just to sub as needed and he told me he didn't think it would be a good idea right now. He said I should have a 20-30 lbs weight limit and also I have started sleeping in a chair sometimes because I wake up in too much pain in a bed. They have set me up for an MRI and a CT scan to see what the extent of it looks like and that will give a little better idea. We also asked about non-drug or non-surgical alternatives and I am also going to do PT although not really sure what they can do for that. That is the news lately.

newest update

well, like steph said, hospitals suck. I agreed to let them take my pain pump away because they seemed to have a reasonable solution in pain management...well, that didn't work, and they didn't hold up their end of the management thing and now I am in huge amounts of pain that they totally can't figure out. Pain that isn't in the area of the surgery but mind blowing none the less. I can't keep my O2 sats up. Without the nasal oxygen it stays at around 93, with it goes up only to 95-96. I also have a very interesting. very bad rash on my back, totally in the rectangle shape of the draping they laid down during the surgery. Despite the fire engine red allergy bracelet that says ALLERGY on it they used a strong adhesive during the procedure. Still no word one when I am going home. Basically they say stop asking and it will happen when it happens. Had another minor setback but not sure what it was, have only just woken up a bit ago.

'blind side'ed

So I was watching Blind Side while organizing my room, getting things ready for my coming period of laying around and it just ended. It is a good movie, very cute and touching but it totally broke the dam I had up I guess. I started bawling like baby about the movie. All the stuff I have tried to put off just kind of came out. I was sitting there laughing at myself crying over a movie so I put Tosh.0 on and am laughing at stupid people. Always an upper. Anyway, only three more days. Started packing my little suitcase today. No idea what I am going to need. So far I have lotion, a robe and fuzzy socks. yep, call me prepared. I guess some nightgowns although with the IV they will need to be tied or such. Also planning on going to get my hair and nails done this week since it will probably be a long time before I am able to and at least with my hair I want to go short and easy, and still able to put up in a pony tail, oh and maybe get it all colored so it looks slightly more natural and getting nails is a medical need since they are too think to break skin when I scratch when I get so itch with meds and dry hospital air and all that other stuff...no matter how I have tried to phrase it though United Health Care refuses to pay, even if I bring my own polish. Oh well...okay it is about 1:30 in the morning and I am starting to get tired so I am going to lay down for a while

slacker

I am such a slacker as far as blogging goes. We are on vacation though so that should give me a little bit of an exucse. Been a great trip so far. We have been doing lots of things and I can't wait to share a little more once I figure how how to put pictures on this thng...anyone know how?

The Whole Story, well most of it

okay, so I thought I would go through the whole story just to have it down so I could just refer people to it. So it started about January I guess as far as it really stepping up. I guess I have had back pain for a while and went to a chiropractor about a year before for what I thought was a sore muscle. But anyway, I had really for the first time in my life decided I no longer wanted to be twice the woman I had become so I noticed that Ballwin was having a "lose to win" challenge so I figured that would be a great opportunity and joined. I went a few times, my trainer was great and really pushed me so hard and I was actually even starting to get a little bit of that enjoyment I had heard of from a really hard work out. One morning I woke up and was in a blinding amount of pain so I called the doctor. Well, turns out one of the little machines they had me use for back extensions we thought I may have hurt myself on so I did PT for about six weeks with no relief so we did an x-ray and they found I had a tumor in my spine, well not exactly a tumor but a lack of where they should have been bone. This led into months and months of every test they could come up with. From what I have been able to figure out is that what they thought it was was metastatic cancer and they were looking for the primary site. Four months later after MRI's, CT's, blood tests, PET scans, ultrasounds and whatever else they decided that there was no known cancer anywhere else in my body so we did a biopsy to get the the bottom of the one that I do have. After several biopsy and two different neurosurgeons I was finally given a diagnosis of desmoplastic fibroma. It is one of those things that is so rare and hard to pin down that it kind of falls into that middle ground between cancer and not cancer. It pretty much is but isn't at the same time. Too slow growing to have to worry about chemo or radiation but also means they can't shrink it before they take it out and have to take it out in total. It is located on the T11 vertebra so the operation is going to pretty much suck ass. They will also have to be taking out the pedicle and side of the vertebra right above and below the tumor so three in total, not to mention collapsing the lung so they have room to do all this and doing something to the ribs since they won't be attached to anything anymore. And of course adding rods and pins and nuts and actual cadaver bone. I wonder if this will change my personality like that movie I saw one time. I don't know much about the recovery yet. I will be in the hospital for about a week and then home unless I am having trouble breathing on my own after the collapsed lung, then I get to go to a nursing home for a week or two. Could be interesting, all the tapioca I can stomach. Okay, off to bed...trying to do pictures on here so I can add some things I have found

cane shopping

so, I bought my first cane today, pink of course. I totally plan on pimping it out. I plan on putting sparkles on it as soon as I figure out the best way to make them stick without leaving a sparkle trail everywhere I go. Please let me know if you have any ideas. Maybe do the whole thing with spray glue and then shelack it? I don't really want to have that permanent sticky feeling either though. Oh decisions, decisions. Who knew that being a short term cripple was such a fashion nightmare! Well, probably everyone. Maybe I will go into business making young, hip gimp supplies. I don't see how that can go wrong at all. Anyone want to invest? I have always had a habit of naming inanimate objects. Most notably were Sparky the space heater, (which was more of a tempting fate thing than any actual fire hazard) and Lassie the radar detector (because it was always going off at odd times, usually near the schnucks, where we figured the bad guys were holding Timmy) So of course I had to find a name for the cane, I think we are going to have to go with Candice for obvious reasons. Candy would be too obvious, but Candice is okay. Again I am open to suggestion. I thought of going with Michael but it is too pink for a boy name although maybe I am putting way to much thought into it.