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.

A post that was supposed to be normal..

Okay it is officially Feb. 1st...and so this is my surgery day. Well, technically I still have to go to sleep but who sleeps much the night before surgery. Guess I should treat it like any other night...seems everyone else has. I still had to cook and clean...and clean some more...there truly is no rest for the weary. I guess I shouldn't complain...I will be sitting on my ass for the next week anyways. Oh wait, last time I had knee surgery I was painting walls and moving furniture. Hmmmm....well...I guess I could just refuse. But then I might starve and just fade away into the furniture. Actually that doesn't sound so bad. I don't know what I expected. I just feel...somehow...like I wish I was someone or somewhere else..I get this way sometimes...not as much as I used to but sometimes I close my eyes and I see my heart drifting away like a feather in the wind. Outside of my body and who I am in this world, just floating away only being me...the me in my soul. The one who still has dreams. The one who is still going to far away places to do wonderful things and never have a care about the menial things that plague my life...like money and health...and people. Somewhere inside there is the me that still cares just about me...no matter how often I have to push me away...put me off...put me last. I guess one day, when I have lived my life here on earth, my spirit will be free. But I will always have envy for the few people in this world who are free spirits in life.
So, snap, back to the real world. I guess I need to get in there and take my medicine. I am not supposed to have anything after midnight and it is 1227...so I better do it now. And then try to sleep. Maybe I will have a good dream. Last night I dreamed I was being attacked by sharks. I think I can come up with a better scenario than that tonight..anything...
When I was little I wanted to fly. That was my dream. I didn't know how..but I knew that I wanted that feeling. I was a gymnast and every time I had that split second in the air I got such a rush. I once went to an airfield and got to watch the fighter jets take off and land. I wanted to join the Navy and be a fighter pilot. I guess we all grow up and some of us take on our dreams, and others go on to do other equally important things. But you never forget your childhood dreams. I still get on a good roller coaster once in a while just to get that rush of speed and weightlessness of the "zero G" feeling...if reincarnation is real...I think I must have been a bird in another life...or a bug...maybe I was a fly...yeah..thats probably it...that would explain my inevitable ability to find myself surrounded by so much shit.
See...this is what happens to the brain when you are alone and you have surgery in 7 hours..you get weird...
I could just erase this whole thing and post the same mundane but cordial bs that I usually write, but in the interest of science I will leave my ramblings for whoever wanders in to read and critique. I assure you I am in fact a little bit crazy. I always have been...I just am a master of disguise...had you fooled didn't I?

Blame it on winter...

I haven't been online much this week. I have been trying to get some things done before my surgery next week. And taking care of a sick kid, and feeling the wrath of being off of MTX and ibuprofen. I am starting to puff up. I am sure it the lack of meds and the fact that after weeks of cold and rain we have had a few beautiful days, only to be followed by more cold and rain this weekend. Something about all the changes in the weather seems to really cause the RA to flare. Guess I live in the wrong place, huh? There is a saying around here that goes "if you don't like the weather in Houston, wait 10 minutes" and it is plain truth...except from June through September...then it is 90 degrees or more and steamy like a steam room at the spa. Good for sitting in the shade with a cold glass of tea and terrible for putting on make-up, trying to do anything more with your hair than a ponytail, and attempting to look nice going anywhere. I have always loved the cold, cloudy and rainy days. Curling up on the couch or bundling up in sweaters and hats and going out to get rosey cheeks in the crisp air made me happy. I dreaded the hot summer days. But, it is official..after 32 years of loving the cold, I have officially declared war on winter weather. I am so ready for some hot sunny days. I cant spend any amount of time outside while it is cold and so now I want the warmth so I can sit outside by the river and watch the boats go by. Today is sunny and in the 60's. The water is glistening in the sunlight and my dogs are stretched out on a sunny portion of the rug on the back porch. Tomorrow, the rain returns.
It has been a little over a week since my spinal injections and I haven't had any migraines this week, but my neck has been so stiff and my shoulders and under my shoulder blades are stiff and sore and pinch with every movement. I am to call my docs office on Wed to give the official 2 week report. So I guess I will see what happens in the next 5 days.
Knee surgery is on Thursday. Blah. I am not looking forward to the recovery period. The first 4 weeks is hell. But I am ready to get it over with. I have been doing everything I can to try to improve the rest of my health issues in the hopes that the RA will behave. If not than I quit..can I quit? Can't I just say I don't want this RA anymore and give it back? eh...guess not...oh well..every little bit helps I guess.
I am just looking forward to springtime...thinking my knee should be better, my neck hopefully will be better, and maybe the RA will be happier with warmer weather..So that is it..I am blaming all the bad on winter and need spring to come on..
Next Friday is Groundhog day...wonder if we are gonna get an early spring?

Well here it is...

Well as I last left you I was in misery and waiting for my doctor to call me and let me know what I should be feeling and expecting. He said that it was normal to feel really sore after the spinal injections and that in my case, my muscles were so tight that he wasn't surprised that they were so tight. So I took some pain medicine and a muscle relaxer and put an icepack on my neck...and then repeated a while later and got some sleep.
Doc did say that it would take between 24-48 hrs for the meds that he injected to absorb in my body and start giving me relief. So yesterday am was 24 hrs, and I was probably at a 4 on the pain scale. Not bad enough to take anything, but I didn't do much either. By last night only the injection sites hurt. Today, I have my usual stiff neck back. So we will just have to wait and see how things pan out over the next 2 weeks.
My hands and feet hurt again...more rain must be on the way. LOL...like an old weather vane. And that is it. I am way more rested today than I have been all week. It was a long week and I had a bit of an emotional meltdown yesterday. So I am feeling a lot better today.
One day I will win the lottery and all my problems will go away. If I had to choose between RA and millions of dollars...I would take the money. I could deal with the RA if I didn't have to stress over every dime every damn day of my life.
Yeah..call me shallow...but it is the honest truth.

I Did It!

Well..I had my cervical spinal injections today...and I survived! LOL! I was really nervous that it would hurt, but they gave me some IV drugs (versed) to help me relax and then they just numbed the site on the side of my neck locally with a shot of lido. The doc put a needle in my neck and was using a fluoroscope to guide and take pictures. He poked around and asked things like "can you feel that in your arm?" After a few minutes he did the other side. The only thing that hurt was the numbing medicine that he put in and that was mild and very brief. I was ready to go home after about 1 1/2 hrs in recovery and I was very lucid.
I wasn't really having much neck pain today when I went..mostly b/c my legs and feet were just so damn bad. But now my neck and shoulders are stiff and I have a terrible headache. The usual for my neck pain when it is acting up. I think I am going to call the doctor on call tonight since I don't remember what exactly they said about this and the paper they gave me is a bit unclear. But, I don't think it worked as a pain reliever...so I hope at least the pictures will tell my doctor what to do next.
I am just glad it is over and was not bad...and I am so thankful for all of my online friends that sent out the good vibes and prayers for me today...It worked y'all...y'all got me through this and I am so lucky to have each and every one of you rooting for me!
I will update when I talk to the doctor.

I have found a cure...

Okay....at least a temporary one....I have been watching American Idol..and laughing so hard. That is one way to get through a bad day. Watch AI with all of the weirdos, freaks, and goobers...and you will get some of the best medicine possible...laughter.
I enjoy watching the talented singers perform, but always get a good chuckle at the bad ones. This year they are out doing themselves with all of the horrible singing, funny outfits, dancing, juggling...and rolling on the floor. And then, you get to watch them yell at the judges, curse at the camera, and get escorted out by the cops. It almost reminds me of a night at work in the ER...as a matter of fact, I was thinking earlier that I bet the ERs in the cities are empty the day of American Idol auditions..all the freaks are busy. Only the really sick people to go to the ER. Think it is funny...I bet it is true. Oh well...all for a good laugh and a bit of fun.

BTW..if you are a country music fan, check out Nashville Star on USA network on Thursday nights. There is a website too where you see what it is all about. Jewel is the host, along with Cowboy Troy. It is a good show and last week was the first episode of the season.

A little bit of entertainment is always good for the soul.

Okay..it was the weather...

I have been wondering if I felt so good last week because of the Remicade or because we had spring like weather...well now I know...it was the weather. We are experiencing the coldest weather all year right now..and I am worse than I have been all year too. Actually yesterday when the temp was dropping was the worst. I was falling asleep when I was posting on the blog. So today I have had painful feet and hands and a little bit knees to. Yesterday my back was so bad that it was weak. I guess if I werent on MTX and maybe the Remicade I would be a lot worse..so that is something. But still, when I do have pain, no pain med releives it.
So Houston got lucky last night and the storm passed us up...no ice on the roads...but tonight, it is sleeting outside. We are not used to driving in this kind of stuff down here so I dont know if anything is gonna be open tomorrow. I just hope we dont get into a situation where we lose power or anything.
Anyways that is all for today...just hanging out at home...watching the weather and hiding under the blankets with the family and 5 chihuahuas and 2 cats....lol.

City Shutting Down

It looks as though the city of Houston and the surrounding areas are basically shutting down overnight and in the early part of tomorrow morning due to a winter storm that is bearing down on the usually mild southeast Texas. There are roads shutting down and schools closing. There is talk of icey roads and flood warnings.
With all of the cold and stormy weather my fingers are feeling stiff and sore and every time I move any toe or finger into a weird position it really hurts. I know I know....dont move them into weird positions. But I am talking about leaning my foot against the back of the couch or anything like that. I went to the doctor today and my feet were killing me. I couldnt wait to get out of there and take my shoes off. Tennis-shoes were just too tight today.
I also am so tired and there is no reason why I should be sleepy like this excepth the weather..
YAY winter!

Thars a storm a brewin'!

According to the weather report we are supposed to get some really bad icey rain in the next few days. Right now it is very sunny and 72 degrees outside. But my hands were really stiff this morning and they have been pretty good all week. I always wonder about this. Every time I have a few good days I will thing that the medicine is starting to work and then I realize that the weather has been mild. The temp will drop or some big rain and tornado storm will come and my body crumples. Tuesday the temp is supposed to be 50 in the morning and is going to drop into the 30s with an 80% chance of rain. Well...cant do anything about the weather. Guess I just will make sure my warm winter clothes are clean and ready to wear...after wearing flip flops and capris this weekend.

I started taking Boniva today. I have had Fosamax which really stuck in my throat and Actonel...which I could never remember to take. So I asked about the Boniva and my doctor gave my a perscription. It is only once a month so maybe I will be able to remember it. So far so good...

Bad blogger..long week

Well...I havent been very good this week about getting online...which is not the norm for me. But since my last blog I have been suffering with some wicked migraines. I also held a 7th birthday party for my son and then on Monday I went for my 4th Remicade infusion. I was planning on asking if maybe the dose needed to be increased because I dont really feel like it is working. I was suprised to find out that I already am on 5mg/kg. The usual starting dose is 3mg/kg....but my rd started me out a higher dose already because I didnt have sucess with Enbrel or Humira. So I am already at a high dose...so now what? What if it doesnt work? Do I just keep on taking it and see what happens....or move on to something like Rituxin? I am pretty nervous about the idea of Rituxin or Orencia...they are so new and I dont really want to be a guinnea pig. I think if the Remicade doesnt do anything than I am going to stay on the MTX and thats it. I dunno...I guess for now I just stay with the Remicade.
Anyways the combo of my neck problem...which is a slipped disc at C-5 and C-6...and the side effect of the Remicade has really been giving me some horrible migraines that are so hard to get rid of. Now for the new problem...I have spinal injections in my neck scheduled for this Thursday but I forgot about the co-pay...and I dont know if I am going to be able to swing the cost or not. I chalk it up to my lack of organization and the fact that I dont really want the injections. I mean..I want relief...but owie...needles in my neck...When I am feeling okay I dont want the injections at all but when my neck is really hurting bad I think I would do anything to make the pain stop.
I guess I am going to try and get them. Uggg...I suppose the injections are the lesser of 2 evils.
So that is what my week has been like..lots of headaches, lots to worry about, and unrelenting fatigue. The fatigue, I am sure, was contributed to by the headaches and the stress. Oh, yeah, and the fact that I just realized that I have not been taking folic acid. I havent taken it in months. I am not sure how I left out that little detail other than the fact that I have had a few periods of time when I was off of the MTX because of surgery or illness.
Well, next week will be a busy one, especially if I decide to procede with the injections. I will do my best to log on here and blog like a good blogger should.

Welcome to my Blog site!

Okay...I finally did it....here is my blog site. So for the first one I will tell you a little bit about myself. I am 32, I have RA, OA, and osteopenia. I also have a slipped disk in my cervical spine. I am currently on Remicade and Methotrexate for RA and when I remember to take it, Actonel for osteopenia. I have had one arthoscopic knee surgery in sept 06...and I have another one scheduled for feb on the other knee. I am not sure that the Remicade is doing its job at this point. I am getting ready to undergo some spinal injections in my neck in an attempt to get some relief from the pain related to the slipped disc and well....I guess I have a lot of things coming up soon.
I am an ER nurse, though I have been on medical leave for the past few months and I am not sure at this point when if ever I will return to work. Don't worry, I have plenty to keep me busy with 2 kids, 2 cats, and 5 dogs. Oh, yeah, and a husband too...lol.
I live in Texas and most people who know me will agree that I am very proud of this fact. I am usually a happy person considering all of the crap that I have to deal with and I have a pretty laid back attitude and a good sense of humor.
I am the creator of RAsushi, but I couldn't have done it with out the help of my friends Liz (Grammaskittles) and Katie (ArrisColwell). They have done so much of the technical stuff, and they are the ones who keep the RAsushi blog going strong.
This blog is just my journaling about my day to day thoughts and feelings on life with RA. I am a pretty typical person...and average girl. So maybe just maybe my story is someone else's story...and maybe I will be able to help someone deal with RA, or at the very least help them to ward off insomnia.