Yikes!

Wow I cant believe that a month has passed since my last post! I have had so much going on that I havent been online at all much. I dont want to post just yet as to the possible changes that may take place, but lets just say that we are going through a family change right now. (and no I am not getting a divorce!)
As far as my physical health, I have a few new docs and I am trying to get things lined out. My knees and ankles, and feet are still acting up and I am still having trouble walking at times. I dont know what is going to happen with that. I have given up on the Remicade. I have to decide on Orencia or Rituxin...or nothing. I am really leaning towards just staying on the MTX for a while. See how that works out. I want to get a bicycle and start riding every day. Maybe that, along with the warm summer weather will help me. So that is it for now. I promise I will update sooner this time.

House Calls...

I was just sitting here contemplating how frustrated I am that I seem to have no continuity in my care. Each doctor is just cruising along thinking that he or she is making me all better. The truth is that I never have a good day anymore. Haven't in a long long time. Maybe a few days back in November. That is sad. And before that..I don't even know. So amidst all of my frustration I thought "wouldn't it be great if docs still made house calls?" That way I could arrange for them all to be here at once. Maybe between the 8 or so of them they could figure something out.

All of this makes me realize that I am just getting tired of it all. I think there is going to be a breaking point when I decide the all of the time and money it is costing me to try and get better is, in fact, only making my life worse. I am going to keep it up since I am already knee deep in it all. And because I am hoping to get my ssd. But if I don't, and nothing is happening right...I am going to just quit. How much worse could I be? I have no life as it is. I cant enjoy many things more than just sitting around and watching everyone else live life. I can do that with out all of the meds and trips all over creation to doctors offices and then the pharmacy to spend the money we don't have.

Blah. Frustration is so damn frustrating.

Days 4-7

Day 4, Tuesday-Okay day 4 was a sleep all day kind of day. I woke up to run to the store for Valentines cards for my son, and then back home to watch American Idol and House. Then it was back to bed. Not much to report because I was just too wiped out to do much.

Day 5, Wed.-Took a shower, went to eat lunch with my husband and daughter (who was still home sick from school) and then off to my first day of physical therapy. I thought that I was doing so great with my knee....haha..until I got there and they wanted me to do straight leg lifts. That is where you lay on your back with your one knee bent and the other leg strait out. You lift the strait one up about a foot off the mat and then lower it slowly. My brain was telling my leg to lift...but nothing would happen. I did PT for an hour and then went home. I wasn't sore right after, but that evening I started to get more sore and by that night I was miserable. I couldn't sleep because my legs were killing me. I did finally fall asleep after some pain medicine, but I still tossed and turned all night.

Day 6, Thurs.-Showered and off to a Dr's appointment. This was to see my spine doc/pn management. I was already having leg and foot pain just from the walking from the parking garage to their office. She did strength tests on my hands and arms, and legs and feet. I had to move my neck around a bit too. Nothing real strenuous. I am going to have more injections in my neck done and I am getting a new TENS unit. On the drive home I started getting so sleepy that I was afraid I would fall asleep driving. I went home and was asleep by 2pm. Slept until 7 when I had to get up and fix some dinner. I was just feeling so worn out, and to top it off I was still a little sick with the cold that I picked up from my kids...and the mouth ulcer that has been lingering around for a whole week now. Sleep sleep sleep. I felt the soreness in my hands and arms and feet from the exam. That happens a lot...I can go in to see the doc and they poke and push and pull and I am okay...but that triggers it all and then I feel rotten after I get home. Kind of backwards...

Day 7, Fri.-Today was up and a shower and out the door to PT again. I was more achy today...and PT was harder. I had one quick errand to run and then drove to my husbands work to bring him some cold medicine. Yes...I am feeling better in that regard...but now my husband is coming down with the congestion and cough...urgh...fortunatly my kids are doing much better. I came home to pick up kids and have a late lunch...then off again to return movies and get groceries. Not a lot..just a few things. I rode in the little electric cart and let the bag boy carry out and load my stuff in the car. My knees thanked me. They are both hurting and my hands are sore and stiff too. My kids unloaded the groceries. I did'nt do a big meal tonight. I reheated leftovers and then, well, here I am... laying in bed with the heating blanket and my laptop.

So I have concluded that in a lot of ways this week was not an ordinary week because I had sick kids to deal with and I was starting PT and I was feeling under the weather. But then on second thought...the truth is that my life is always like this. I always have something going on. And while I do more than a person who is very ill and I don't stay in bed and have things done for me all the time...I have to deal with a lot of pain from the least amount of activity, and it doesn't take much to wear me out. I think I want to do this again in about 2 weeks when we aren't all sick and I am not so fresh out of surgery. I would like to see how things compare.

I wanted to see if I was underestimating what I could do on a daily basis...and I know I should have posted each day. But I think this was pretty accurate. I didn't have much to remember anyways.

Hope I haven't bored anyone to tears...I would like to hear any feed back if anyone has any.

Days 2 and 3 (Sunday and Monday)

Day 2: Sunday was cold and nasty out for most of the day and everyone just took it easy. Sunday is usually a day to rest anyways for us and I think it is one of the reasons why I always seem to be doing so well when I go to the rheumatologist...my appts are always on Mondays and Tuesdays. Anyways, the only walking I did was to go next door and see the fish that my husband and our neighbor caught. Yes, they did go fishing in 45 degree weather. Anyways, I was doing okay on pain since I stayed down all day, however I did start getting neck pain in the evening a the beginning of a headache. I took some pain meds for that and the horrible mouth sores I have been getting. I finally decided at 10 pm to go take a shower. 5min in and I almost fell trying to keep my balance. My feet hurt so bad. Standing in the shower is the worst. So I hobbled out and back to the couch. Took some more pain meds and went to sleep.

Day 3: Monday was another day of resting. I woke up on the couch and went straight to the bed. I read for about an hour and my husband was so nice as to bring me lunch in bed. After a while I got up and fixed ramen noodles for the kids (they were still home sick yesterday) and then I went back to bed. I napped for about 2 hours and then got up and got dressed to go to my moms house. I went there and sat and visited. She cooked so we all ate dinner. I helped her with the dinner dishes and then had to sit again. My feet and legs were sore. I was a little sick at my stomach too. I am not sure if that was nerves or what. I think I am coming down with what my kids have. I rested a little while and then drove back towards home. I had to stop at Walgreens and get some medicine for the mouth sores. They are very painful this time and one in particular is not wanting to heal. So I used a buggy because that seems to help give me support and I got my medicine and 2 other small items that I needed and headed home. I came in, put PJs on and crashed. I didnt even have the energy for a shower....not that I did much anyways. But I hate days like that, when even a shower or cooking a meal seems too daunting a task.
I am on day 4 now and I will come back later to post..but I can tell you..I am going to bed now..because I am definitely getting sick. Ugghhh. I am also waiting for my RDs nurse to call back. I am going to call and gripe..just for the record...and ask for something for my mouth....and Oh she just called me back. So now I wait for her to call me and let me know what he says. So I am off to bed. Bye now.

Day One

Okay so today I had a hard time getting up. I went to bed around 1 or 2 last night...earlier than ususal for me. I slept hard and I did get up around 7am to give my daughter some medicine. I tried to get up around 10 but it was 11 before I finally woke up. My mouth was sort of puffy and I have about 4 ulcers in my mouth that developed yesterday. I kept a glass of ice water by the sofa where I was sleeping to help keep my mouth moist and cool...which helps a lot. A hot dry mouth makes the sores hurt much more. I took 2 motrin when I woke up also to help with the swelling of the sores.
I didnt plan on going anywhere but after a good look at my daughter I realized she needed to go to the doctor and get on some antibiotics. So I got her clothes and helped her wash up and get dressed. I also had to go out to the laundry to get clean towels for the bathroom. So I had about an hour on my feet between doing those two things and then getting my self dressed and fixing my hair. My feet were hurting by then and I went to the kitchen to get something to eat. (homemade tamales from a friend, yum-o!) Then my daughter and I loaded up in the car and headed out to the doctors office.
We got lucky and got a parking space in front, so no long walk there. We went in and I sat and waited, then sat some more in the exam room. We were there for maybe an hour total. We left and I went to the pharmacy, drive through, yay...and since we had to wait for an hour for it to be ready we decided to go get a coffee and my daughters hair trimmed. By luck I found another parking spot on the front row so it was a short walk of maybe 50 ft to Starbucks, stand in line and order. This was the point when my feet were starting to hurt to a point that I was wishing I had brought my cane. I sat while I waited for my order and my daughter got them when ready. We sat for a while and then walked the 50ft back towards the car and the hair salon. While she got a hair cut, I had to stand by her to comfort her. She is tender headed and cryed the whole time. So that was a good 15 to 20 min on my feet....ouch. I limped out of the salon to my car which was thankfully right outside the door.
We drove back to the pharmacy and I used to buggy as sort of a walker. I picked out some medicine for my kid, and a box of bandaids, and went to the back to get my perscriptions. When I was done I had to stand outside of the car for a few minutes to open up stuff and medicate my kiddo...whose fever had come back. I was on my feet for about 15 min in the store and another 15 outside.
Then I got in...I was really dying by now. I took a darvocett, and off we went to the post office at the airport. That was not bad..in and out in 5 min. The post office is about a 15 min drive from where we were before..so I had time to rest on the way there and back..
Next to the video store..I would say 20 min there..and I literally couldnt stand anymore. I had to leave. 15 more minutes in the car and we were home. I hobbled inside, changed into my PJs and that is how I got here.
So let me see...how much time was I on my feet untill I was in pain? 1 hour...And then that plus the rest of the time I was on my feet was a total of 2 hours and 35 min.
Wow..2 1/2 hrs with rest periods of approx 15 min every 15 min or so. I only had 1 hour that I was in minimal discomfort...and I spent the rest of the day in pain. I had to force my self to walk the second hour and half of my walk time.
Well..I am relaxing the rest of the day. See yall tomorrow...

Geeze what a week I have had...

I cant believe I haven't posted all week here..I have been blogging on the sushi blog and message board so much that it all ran together....but this has been a crazy week. My kids are taking turns being sick and my husband has been having one of those weeks where every day is like a bad Monday. I guess it is the "groundhog day effect". Like the movie with Bill Murray....you get one crappy day and just keeps repeating over and over again.

I am going to use this blog site as a way to document my activities for one week..to really get an accurate take on my symptoms and activity level. Some may find this rather boring to read..and I apologize in advance for my uneventful life. But feel free to comment...and just try to think of this as an experiment for the sake of science and medicine.

Back to myself again...

My moment of irrational thought passed last night and after my last post I fell asleep easily. I woke up this morning and was careful to savor my shower as it would be my last really good one for at least a week. Things went smoothly at the hospital and this time I didn't get nervous at the last minute like the first knee surgery I had in Sept. I remember more about being in the OR right before the surgery, and I woke up pretty easily after....although I do sort of remember answering a few questions with odd answers...lol. At any rate, I have been doing pretty good...I had quite a bit of pain initially but today was not bad. I know it is gonna get a little worse now that the drugs from the hospital are wearing off. I haven't used the crutches at all since I was able to borrow a cane. That is so much better than those crutches. So anyways...I am feeling a whole lot better about things now that it is done. I am relieved that at least for now, I don't have any more surgeries in my (near) future.