Rheumatoid Arthritis

Now I know everyone get those feelings at times. The ones that makes them feel odd or think no one understand them. However I get this the worst when I use my wheelchair. I don't always have to use a wheelchair. With RA it depends what day it is. If I have step wrong or something is flaring up or if I done too much walking or shopping for one day will all cause me a need to either stop or use the wheelchair. Well I totally refuse to stop. I'm going to do what I want one way or another. On the same side though I can't enjoy shopping or effectively shop wisely if I'm in pain. My husband and I had been out Christmas shopping. We had gone threw four thrift store, a mall, four stores, and was about to go to walmart. Now Walmart never has enough electronic carts to go around so my husband pulled out my own wheelchair. Inside we found a bulky item at a great price that he wanted to run out to the car. (don't want to give away the item yet). So he went to check out and wo

Now before my complaint starts for the overall cost. Orencia does have a co-pay assistance program, which I have signed up for and hopefully will be approved. This is for once orencia infusion which the first four are done two weeks apart and then once a month. So this is the total cost of one infusion which is a half hour and necessary lab work. There was two chair in what looked about the size of three small gallery style kitchen. Now this room had less to offer then the previous room when they used to give the RA meds with the cancer meds. No TV, No snacks, and No water provided this time. Not that snacks where needed for just a half hour, but TV and water would have been nice. My point here is to not put down the office, but to show that this was nothing more then a spot in a chair with a half hour infusion. Had I not had my insurance,  Which is what show above I paid zero out of pocket (I've met my out of pocket cap for the year), I would have went bankrupt with just th

Losing Weight is difficult on its own. For people with other related health issues it can be even harder. For people with health issues that affect joints and mussels the best way to exersice is the water. Because the water take the pressure off the body and allows the person to beable to move more. Unfortuanly I don't own a pool and don't have much time. I'm a mother, a wife, a router for a cable company, an online writer, and a gamer. Multitasking is my friend as I often don't do just one thing at a time, but you can easily see where the lack of time is. Especailly when everyone is telling me to make sure to get a full eight to ten hours of sleep. I'm averiging about six right or less right now, just having a hard time staying asleep. I do have a prescription to help with that but I don't like to take it on nights when I have to get up early the next day. So losing weight is just plain hard, but I really want to lose some pounds. It would help me to take o

It has been a long week. I have tried to start walking more which may be contributing to a flare up in my knee. I just so want to knock off a few pounds. One more week before the next oriencia infusion. Next week I have to see the doctor and then go to the hospital for the infusion because the nurse will be off that day. They had to work hard to fit me into their schedule since I only get Sunday and Monday's off. I really couldn't keep using personal time to cover for the apts, I was running out. I've been having a wonder itchy skin issue though. It currently 3 am and I just can't sleep. My husband is also experiencing the same issue with the itchy skin. I think it is do to the change to an off brand soap. We normally have to use Dove Sensitive skin or an off brand similar. I think he tried a different one that just said sensitive skin and was a store brand. Well tomorrow I'll remedy that with a stop at the local store. I would really like to see about visiti

We had some fun with my liver functions being messed up. The doctor took me off the methotrexate and thankfully they went back to normal. So no more methotrexate for me. Now the methotrexate is one of the main drugs used to help stop or slow down the Rheumatoid Arthritis. So right now we are praying the Orencia can do it all. With the cold weather though I been getting harsh sharp pains in my lower back, hip, hands, knees, and shoulders. I called into the doctor and got some tramadol. I made the mistake of taking a whole one tonight. I'm a bit of a light weight so next time I'll take only half. I can still feel the pain a little but I don't like the cloudiness in my head feeling I get. Now I am 33 years old but I totally understand why it seems people move to warmer climates as they retire. Monday is my next infusion day. My goal is to drink lots of water on Sunday to make the IV part go as smooth as possible. Days like today make me not want to get out of bed but I

I didn't get picture last time I went to get an infusion. Last time I got the rituxan infusion, we were in a room with the kemo treatments. Now they have the RA and Kemo treatments separated. I was in a long room with two seats and doctor table. It was the kind of chair like what they have when getting blood drawn. This may not sound as nice as the lazy boy chair I described with the rituxan, but I liked this one more as I could get in and out of the chair. There was one nurse to watch us. I was the only one in the room at the time, but towards the end of the infusion another person came in to start their treatment. The rheumatologist came in and cleared me for the infusion. They wanted to make sure there was no unnecessary health risks and that I was healthy enough to start the infusion. They really like you to bring all your medications, but I had left mine on the table at home. After we went over the medicine and got our clearance from the doctor, the nurse mixed up the medi

On Monday October 29 I was able to receive my first orencia infusion. The infusion went well overall. I have notice any side effects and am overall feeling okay. I have some issues with headaches and have had some flares up, both of which I think is related to the weather. The headaches are like a sinus headache. The wonderfully cold weather sneaking in over the last few days is what I blame my joints being sore on.   I have to get infusions in two week, another two weeks, then once a month. For a much as I hate needles I'm sure hoping for some really good results. As of right now I can't tell a difference. My Doctor did tell me to wait until after about the fourth infusion before noticing improvements.   For now I am very lucky to be able to get the medical treatment that I need. I went many years without in the past. My heart goes out to the many who can not afford to get the medical treatment. Somewhere along the way money shouldn't be the reason for treatment.

Lots have changed since my last post. I was told to stop taking everything. The rheumatologist thinks rituxan is not working for me. I started to feel much much better. Then the rheumatologist put me back on methotrexate and 5 mg of prednisone. Big Day coming up October 29th. the day to try Orencia. Not too sure how I feel about it, but I'm willing to try it. My Rhuematologist is very good so I trust she will find the right answer in the end. Thank god my insurance has an out of pocket cap. I won't have to worry until January as I have already met my out of pocket cap for this year. I will share the wonderful expense and experience as we go through this new treatment. Fingers crossed this works cause I hate needles. From what I understand I'll have three infusion, taking about an hour each, two weeks apart. Then once a month. I'm expecting big results for getting an IV once a month or we won't get too far with this treatment. Overall things are going really we

Well my insurance company at work it trying to help make everyone healthier by offering step pedometers. They would like us to walk 10,000 steps a day. Sorry not possible here but I am trying to do more.  My step pedometer does say I walk 3000 steps on an average work day where I don't do too much. But 10,000 steps, it would be nice to do that much walking but since I don't know what is causing the odd flare ups, I'll just have to play it one day at a time. I love to go hiking, shopping, and spending time at Dollywood and Dollywood Splash Country, so I'm sure on those days I do that many steps, but I'm often left sore for the next few days. Today I have had even more fun with odd strong pain through my left knee. The oddest part is that it hurts for no reason. I was woke up this morning at 2 am with very horrible pain, yet I walked OK to my bathroom. The pain in strong and it comes and goes. It not just an ouch, it brings tears to my eyes and leaves me praying f

I had to go to the urgent care today. Yesterday was a very very bad morning. It started out well but at work I got wonderful cold chills and shooting pain in many joints. My lower back, knee, and hip where the top winners of the pain contest. I could have just cried, although that wouldn't have helpped much. It was really hard to keep focus at work. Finally after about two hours I was back to me. If that would have started at home I wouldn't have made it to work, so at least I made it work first. Last night I woke up with extreme knee pain in my left knee. At first I didn't move, but the pain continued. Then I rolled to my side and put a pillow between my knees. Then I grabbed the icyhot, bad idea.. that didn't help at all and the icy part seemed to hurt more. I carefully got up to the bathroom, I was expectin a hard time walking but I could walk on my knee just fine but the knee had this crazy sharp pain that just kept coming and going. In the bathroom I washed off

It has been an interesting long week. I'm taking predisone which has been kind to give me the "I'm hungry" and "very hot" feeling. My wonderfully monthly period is also about to visit giving me that grumpy and tired feeling. All together just plain not feeling right. Yesterday I had a very weird ordeal happen to my right hand. I was using my mouse right after typing and got a cramp in my right hand. Now I have had cramps before, but you could see this cramp. My pinkie finger was forced under my ringer finger and I just couldn't move my hand. I didn't try too hard either as I could feel a very tight pull, see and feel a mussel on the right side of my right hand. I quickly got up and went to the bathroom to put hot water on my hand. With in a few seconds under the hot water the cramp stopped and my hand snapped back into motion. The pain was too bad, more scary then anything. Now I've work 5 and 1/2 days this week. Only worked half a day toda

I had the Rituxan infusion on February 28 and on March 20th. I had done this back in 2007, after that treatment everything went well and I had little flare up for a year. Not this time unfortunately. I felt good afterwards,  but I'm currently on the third week of a good flare up. Sadly, I had to miss two days of work this week. I had to rest at home with cyclobenzaprine, tramadol, and prednisone. Thankfully I did have sick time to cover my days off, but I have recently been promoted at work and feel really bad leaving my co-worker short handed at work. The best way to describe how I feel would be to imagine your shoulders and neck mussels as tight as they can be. Pain goes from the should to the elbow off and on. My right hip hurts with pain going down the side. As the meds have helped some my back is feeling better but very sore and my hip has a pinch type pain inside of it. The meds are not my favorite either. The cyclobenzapine is to be used two hours before bed, except fo

Things are getting better. I have more energy and can do more, but doing more is also hurting. It may be from not being able to do thing for so long. Yesterday my husband and I did some very much needed shopping. I need some clothes and we had to get groceries. We did walk the whole mall and six stores.. so today was very hard. I was very sore. My back normally doesn't bother me, but my upper back feel as though it is pulling and hurts. My left ankle is mad as it really did want to work today, but by the after noon I was able to walk more normal. Just have to keep moving. Still waiting on my insurance to process the last rituxan treatment and my next one is Tuesday. I will share as soon as I see the break down of the bill. Without insurance the RA would have me disabled in a few years. I'm hoping it will be many many more years with insurance, but it'll all depend how out of control the RA has gotten from all the years without the insurance. It OK, as I' stubborn. M

What is the cost of Rituxan? $13,111.70 That was just posted thankfully to my insurance. I'm sure it will be cheaper once the insurance marks it down, hopefully quite a bit. Now I have to do this again in two weeks, then every six months two infusions. Meaning in a year $52,000 just on rituxan and that doesn't include the other doctor apts and meds that I need. That more then the average family make, and more then I make as well. Now imagine been a parent of a child who needs this. “Sorry honey, you'll have to be in pain and not be able to run like the other kids. We just don't have and can't afford insurance.” Would happen, so you would think here in America but it does. Quite honestly it would be better to not work and let the government carry us, but for those trying to make end meet and in the middle class range this does happen. They make too much for help, but not enough to pay for all their needs. What is going to help me is my insurance and rituxan co

Not being found of the idea of getting a weekly shot, I called my insurance copany and prescription coverage and found I don't need to try Enbrel before getting Rituxan. I've had Rituxan before and it an IV infusion every six months. Both have plan to help with prescription co-pays as well. I called my doctor and yesterday she agreed to set me up with Rituxan. Now I'm just waiting for when. Thankfully I work for a very awsome company now with great insurance that has an out of pocket cap, I know that I will easily met that cap.. just gotta work on paying on that cap to keep a float. Right now my hands are very swollen and hurt, although I shouldn't type right now I wanted to share.

Had to get a TB test done today to start the enbrel later this week. I don't remember it sting as much but it did. Not sure if I'm going to get to start enbrel on Wednesday or I may have to reschedule do to lack of time, but we'll see. I'm feeling OK, but very tired. My schdule is a bit full with work, kids, doctors, and thearpy... a bit too much but thankfully it won't last for long.

I've been talking about my left arm since November. I'm back on 5mg of prednisone, so my arm is almost straight by itself. A little bit of work, stretching and all, the elbow does go straight but it still not normal. The elbow is opening all the way, but to me, the elbow is bending in an odd position. Like when you see a joint that is starting to get deformed, it is no longer straight and often bends. Well I'm working on getting the RA to stop, but my five or so years without insurance has taken its toll on my body. Only 32 years but the damage can easily be seen. I'll have to share some picture later on. Enbrel company called today, which was really nice, they were asking if I had any questions, verifying when I'll start taking Enbrel (the 15th of Feb.), and to let me know they have a free nurse to answer questions and professional to answer insurance questions. Enbrel also had co-pay assistance for me which will give the enbrel free for six month, then 10 per

Its that "Women's Mother Nature" time for me again. The wonder pain of every join hurting and funny aches all over my body. Off and on I've been hot and cold. I assume funny levels of Iron since my iron goes low. No energy and cramps. What a wonderful weekend this is going to be. Thankfully I'm off tomorrow, so I'm not planning on doing much. My hands ache but I do my best just to keep doing what I wish. Women have always been grumpy and not feeling well during a harsh month, but it can sure take a toll when a body isn't already up to par. Maybe next month will be better. My day job and my online jobs all including typing, so my hands are good at taking a beating. When I get into a pool everything feels better until I have to get out again. I dream of one day having an indoor pool so I can use it anytime. Its seems like the public pools are either never open at the right time or over crowded.

Well I want to do more. 1. to lose weight and 2. because I've been told to stretch more. I've already over done it a bit as my right knee is throbbing in pain. The pain is never just one spot in the knee. The pain is all around the knee. My left elbow is going straight but aches. My right arm is having odd pain going down my arm between the shoulder and elbow, kind of odd but it is an annoying pain. My hands throbbed today at work too, so they aren't liking to type too much today. I'm going to go try a hot shower and sleep. I got my prescriptions filled today so tomorrow I'll add 5mg of prednisone to my my pills so hopefully I can keep moving and fill better soon. Although it hurts, I want to lose weight and start moving more. I can't wait for summer as a pool would be wonderful right now... maybe I'll be able to get a hot tub in the future.

I finally got to see a Rheumatologist. It has been about five year due to the loss of insurance. At first I wasn't sure, but shortly after meeting her. I knew I found the right doctor for my RA. She quickly saw my issues and I could see she really cared. On Monday I have to go get a TB injection. Wednesday I get the TB injection read and then my first Embrel shot. I really really hate needles but I'm going to do my best to work over that part. Stopping pain and destructing to bones is defiantly worth the darn injection. I just hate that it is one a week. The Rituxan that I had in the past would be every six months, but the insurance company require that we try other method's first. The doctor, Kimberly Leaird, also informed me that Embrel is also the best to stop bone damage with the tb blockers. Just have to see if it works. I would like Embrel to work, but still not overly happy over a weekly injecting. Did a lot of walking after the appointment. We got groceries an

I'm sore today. My elbow is opening just a little more as I keep exercising it. I need to see a real physical therapist, but I'm waiting to see the Rheumatologist in February. Today we walked around thrift stores. Didn't buy much, but we enjoyed getting out and looking. It was rainy today so it was a great way to get out. Unfortunately, my right hip, send pains part down my right leg as I sit here with my feet up. I'm very concerned at how fast I blow through the detectable this year as I don't really have it all at once. I'm fully suspecting to not only blow right through the detectable but also meet my out of pocket cap in just a few months. Only a month more to go. I have lots of question and promise to not only ask them all, but share the answers as well.

Such a confusing place the insurance world is. I keep asking how much and get the reply we won't know until we submit it to insurance. The bills are piling up nicely and I don't see the Rheumatologist until February. The only good news about the insurance is there will be a cap of my out of pocket, so I'll be spending $3500 easy each year just for my medical. Not an easy defeat by a long shot to cover the expense, not to mention the month premium. My job is great and am I very lucky to have such good insurance, hopefully it will stay that way. I feel sorry for those that don't. Rheumatoid Arthritis is more then painful. Pain we can deal with, but sometime it affects life. My left arm won't open all the way. It did bother me too much until it started to hurt, so I went to the doctors. I got more predisone and pain medication. I ended up not taken the pain medication because I didn't like the fog it put me. I had a hard time thinking and just wanted to sleep.