Back On

Today I was finally able to start all my R.A. meds again. After fifteen weeks without anything but Prednisone, I am thrilled.

I had to stop everything before my first surgery. And since everything kept getting delayed, it meant more time without my meds. It was still worth it. My two most painful joints have been replaced.

The last fifteen weeks have not been easy though. Most mornings I wake up to a stiff and painful jaw, hands that cant even make fists, wrist that feel like they will snap, and elbows that are so painful, they keep me up at night. They are both stuck in a bent position, similar to what my knees were. On top of that, I have two hips that never give me a moments rest.

Most of these joints were reasonably well managed when I was on all my medication. So to say Im thrilled to be going back on is a bit of an understatement.

I find it so odd that something I was terrified of taking in the beginning is something I am ecstatic to take again. With all the side effect warnings, I was sort of scared at first. Now I know the relief that they can offer. And I’ve never had any sort of negative reaction to anything I’ve taken in the last four years.

Im most excited about the fact that I will be able to slowly come off of Prednisone. After two years of continuous use, I am very ready to get off of it. Until I started Prednisone regularly, my weight was always in the 130’s range. Not the case anymore. So Im almost as excited about the lack of Prednisone as I am about my new knees.¬† ūüôā

Reflections IV

So I have this voice in the back of my mind whispering that the worst is almost over.

But if four years of battling rheumatoid arthritis has taught me anything it’s that I shouldn’t let my hopes get too high too quickly. Isn’t that a terrible way to view the world? I know it is. But it’s just more practical.

I’m generally an optimistic person, but four years of perpetual disappointments can change anyones point of view.

Since all of this mess has started I’ve always had these goals. Like I would be ok as soon as this or that happened.

When I was twenty and my symptoms started I was working my way through college and had no health insurance. I was just so sure that I would be ok once I paid for all the blood work and got on the right meds. Looking back, it was incredibly naive of me. I had never really been sick before. I didn’t really have any experience with inept doctors. I had never had to deal with costly medications or blood tests. Oddly enough, when I was first diagnosed I was still wildly optimistic that the whole thing was just a small inconvenience. Something that I could easily control and manage.

When it became painfully obvious that my small savings account wouldn’t make it past a few visits, I looked for programs that could help. Or insurance I could afford. I have a file full of denial letters. Full of ugly words like pre existing condition. Government letters full of excuses like over eighteen, or too young, or non immigrant, not pregnant, education level too high. Just silly silly things.

I learned far too quickly that all doctors were not made equal. But most of all, that the only thing that mattered was the amount of money in my wallet. Sympathetic and helpful if there was money. Cold and rude when there wasn’t.

I knew I needed to see a specialist. I needed to get to a rheumatologist. From what I read online, I knew I wasn’t getting the right treatment from my family doctor in my small town. It was my new goal. I just knew that if I could make it to the specialist, I would be back on track.

But specialist cost about three times the rate as my family doctor. It took months, but I eventually made it. I knew I would be ok! In fact, on my first appointment, the nurse told be the doctor would have me running within months. I would have my life back.

A few months went my. The initial medication wasn’t cutting it at all. I had an aggressive case and it hit me hard and very quickly. Within a year I lost almost all the cartilage in my knees. Medications were so expensive. So was the doctors visits and tests. I lost everything. Car payment or medication that might take the pain away? It wasn’t even a real choice. Rent? Or something that will have me walking again? I lost my waitressing job. I thought it would be temporary.

So getting to the specialist wasnt a magic cure all. It didnt get me anywhere. What I really needed was the stronger medication. Enbrel was being called a miracle drug. Enbrel would save me. If I just got on Enbrel. But Enbrel cost thousands of dollars a month. I eventually was able to get on a program that covered the cost, but my this time, almost three years of my life had been wasted.

When Enbrel didn’t save me, I was more focused on winning my appeal with Social Security Disability. The whole process took nearly three years. If I would be accepted, then I would finally have health insurance. I would get real care and not the bare minimum I had had the past three years. Health insurance would solve everything. I would finally get my life back. Back to school! Back to work. But after so long, insurance alone didn’t help.

My knees were already bent and deformed. I could finally afford physical therapy but it was too late. There was no fixing me. The only thing keeping me out of a deep dark depression has been the fact that I have always had these goals. These stepping stones. Lately my goal has been new knees.

And it’s happening. And so I have this voice in the back of my head saying “The worst is over. You’ll get your life back”

But honestly, I’m terrified it will be like everything else.

I’m feeling better than I have in years. But it’s hard to let myself get too overly optimistic. That’s one of the biggest things R.A. has stolen from me.

But I really really think I’m going to be ok now. I know I still have a hard road. I know this. I know my R.A. is still something I will have to deal with. But without my knees being so bad, I think it’s something I can handle. I think I’m going to be ok….

 

P.s. If anyone is curious, I have a picture of my knee without the bandage on. It’s quite disgusting, so if you have a weak stomach, dont click. Lol.

http://i69.photobucket.com/albums/i73/ashleynicole_999/londonjordan915.jpg

Check, Check , Check

I’ve been making my way down the pre-surgery check list. Every time I get one thing checked off, it seems like another item is added.

Wednesday I had a dental appointment and have been cleared.

My Rheumatologist called and said she wanted updated X-rays of my neck. It has given me problems in the past. It hasn’t happened since I’ve been on steroids for the last year and a half, but it used to get stiff and stuck in place. It got so bad I couldn’t swallow food sometimes. She wants to make sure it will be ok if I need to be intubated.

This morning I went to the joint replacement seminar the hospital makes everyone attend before their surgeries. There were five of us. All woman. I was the only one under sixty. The very end of the seminar was a bit of a blur for me though. I had taken some pain medsso I would be able to even make it to the room, and I only managed to get down half a cup of yogurt before my stomach rebelled. I spent the last twenty minutes with a very nauseated stomach. I just sat there trying not to puke. Every timethey were about to let out one of the ladies would start chatting about goats and other such things. The bile finally decided it would be held back no more and I popped out of my seat and was out the door faster than I had moved all month! I heard one of the woman say ” I guess the class is over. She just got up and left!”

I can tell the care in the hospital would be great. The bathroom was down a very long corridor and a nurse asked me if I was ok. I told her I was going to be sick. She grabbed a wheelchair, sat me in it, wheeled me to the restroom and waited outside with crackers and a cup of water. Very very sweet. I was so embarrassed. Stupid pain meds. There was no other option though. It has now been over a month without Enbrel or methotrexate.

I had almost forgotten how far along I had come withthe drugs. I had almost forgot what it felt like to be at the mercy R.A. with no meds. After this surgery, I don’t ever want to go without again. Lol.

Tuesday I have an appointment with my Rheummy to get cleared by her. She will have to check out the Xrays.

Wednesday is the cardiologist. Then I will have to pre-register a week before the surgery. So it’s looking like it will be the 13th.

I’m beyond excited. The seminar freaked me out a bit, but only because I’m terrified of hospitals and Iv’s and needles. Ugh. But other than that, it’s on.

P.S. I want to thank everyone for the comments and encouragement. ¬†And if anyone else has surgery advice to offer, please leave me a comment. I’d love to hear from you.

Knee surgery

I saw my rheumatologist today. After countless physical therapy sessions, I finally get to make an appointment with a orthopedic surgeon to see if I’m a candidate for knee replacement.

My doctor was very reluctant to mention this option. I had to down right refuse anymore physical therapy. I told her there was no way I’m going to keep doing something that is so painful if it isn’t doing any good.

She finally relented and found me a really good surgeon. I called and they had any opening Thursday afternoon for a consult.

Im surprisingly optimistic. My physical therapist told me that my legs are in such a bad state now that if I was older he would have just told me to give up and to resign myself to a wheelchair.  He said that there is alot they can do about stretching and manipulating the tendons while they are in there.

This is my last option really. It has to happen. I cant wait for Thursday.

My rheumatologist told me that if I do have it that I will have to be medication free for at least a month! Ahh! Sounds terrifying. But I’m willing to do ANYthing right now.

So wish me luck! Thursady cant come soon enough for me.

Oh, and Im going to be switching from Enbrel to Humira. All my blood work keeps coming back with high sed rates, inflammation, etc.

This and That

For one month my medication costs were just under $1600. With my new insurance, I only paid $6.25.

Enbrel is the biggest expense. It runs¬†a little¬†$1500 a month, but I now only pay $3.1o. It’s still hard to get used to.

Also, I’m almost out of visits from my home health physical therapist. My right knee went from a 31 degree angle to a 22. And my left leg went from a 29 to an 18. They don’t look any differently though……

I walked across my apartment 3 times in a row on the last visit. Also, my balance is getting much better. I stood up with my feet as close together as I could and was able to stand up about 25 seconds before I began tilting.

Its odd that lately my muscles have been much more sore than my joints! If any of you thought joint pain was harsh, get a deep tissue massage to knots in your calves and flexion contractures behind your knees. Ugh. Almost enough to make me scream out in pain. And sometimes she presses down really hard in one spot for about thirty second. She says it forces the muscle to relax.

I don’t care how much it hurts though. All I want right now is straight knees. I don’t care if she tortures me. I feel alot better though. Its just that I don’t look any differently.

Not to mention, I still have not managed to lose a single pound. Literally. Every single morning I weigh myself, and every single morning it says the same exact thing. I was beginning to think my scale was broken, but nope. It works perfectly ok.¬† I bet my knees would feel amazing if I lost all theexcess weight. But nothing is working! I ate only vegetables and fruits for three weeks and still didn’t lose anything.

I keep having these dreams where I’m running and bouncing around like everything is just fine and dandy. Oh man, to be able to run…..or even jump! Wouldn’t that be amazing. To just take off as fast as I can and run until I cant anymore? That would be beyond amazing.

Good times a comin’

I did want to at least let everyone know how much better I have been doing. In fact, I feel better than I have in years. And I’m on an almost non existent dose of Prednisone.

It’s all thanks to the Enbrel. In the last six weeks or so, it has finally started doing it’s job! Haha.

I received a comment from a woman who was warning people about the risk associated with the drugs. She developed cancer from it, so she is obviously very concerned about it.

In fact, it touched me so much, I debated about whether or not to even say how wonderful it has been to me.

I know the risks involved, and I’m not in any way downplaying what happened to her, because I know it was horrible, and I understand why she would be against it. But it’s still a risk I have to and am willing to take.

Because my quality of life is changing sooooo much for the better. I’ve gone from almost bed bound, to the point where I am now. I’m actually getting out occasionally and visiting friends and family. I went on vacation! ME!

Even a few months ago, it was torture, absolute torture to even get to the bathroom. I’m not saying this for pity. I’m saying it because its a fact. My larotab dosage has gone from¬† 20mg a day(that didn’t even kill the pain. Just took the edge off) to almost nonexistent. I think I’ve taken a dozen 5mg tabs in the past six weeks.

I’m starting home physical therapy now. My knees are stuck at a 29 and 31 degree angle. 100 is completely straight. So my knees are stuck at about a third of the way bent.

I’ve been walking flat footed! For the past couple of years, I’ve had to walk on tip toes to keep my balance.

I don’t think I can possibly put into words how amazing these little things are.

I babysat today and I actually picked up a 3 year old and carried him kicking and screaming to his room. I DID!!!!!!!!!!!!!!

Two years ago I was babysitting and broke down crying when I couldn’t lift a 7 month old baby out of her crib.

I can get out of bed in the middle of the night. There is still pain. But bearable pain.

I’m very happy right now.

I’ve been looking into finishing school. I know I’m not ready yet. But maybe by Fall 2009?

In fact, I think if my knees were not so bad, I would find R.A. to be something I could live with. Of course, its not easy, but after the HELL!!!!!! of the past three years, I’m finally finally FINALLY feeling like I can do this!

So hell yea for HEALTH INSURANCE! I still know I would never had had to suffer like this if I had it. HELL yea for physical therapy. And HELL YEA for Enbrel!

Medical Update

I’ve had three issues in the past couple of weeks.

One being frustration with my pharmacies. Another being frustration with my body, and the last is complete sadness about my doctor.

I’ll start with my pharmacies. I had too order my Enbrel through a pharmacy for the first time. I never expected it to be so complicated. I had to wait until my blood work came back to see if she wanted me to continue on it. She decided to keep me on it for the moment. My doctor sent it to my usual pharmacy. I called to confirm that they received it and to see when it would be and how much. They said they didn’t have it and would have to order it. Since it was a Friday, and Monday was a holiday, they said they couldn’t order it until Tuesday, and expected it by Thursday. Which would make it roughly over two weeks since my last shot.

I called every other pharmacy within thirty miles and no one had it in stock. Surely its not that uncommon?  I decided to stick with my usual pharmacy because I had never had any problems with them.

So the next Thursday I called them to check on the order and they said it wouldn’t be ready until the next day. I called back then and they had the nerve to tell me that they couldn’t carry Enbrel because they were not a specialty pharmacy. So they apologized and said they would fax it to the specialty pharmacy in town.

I had called them before and new they didn’t have any in stock. And since it was a Friday, they couldn’t put the order in until Monday, yadda yadda. So I called them Wednesday, and they said they never received a fax. Then¬†my¬†regular pharmacy¬†said they never had the prescription on file! So I start talking to managers and I’m not happy because it’s been three and a half weeks since my last shot. Lo and behold, a miracle. The previously lost prescription appeared out of thin air. It was re-faxed, and of course, I had to wait for them to order it.

Well Friday came along again, and I went to pick it up. I gave them my insurance card and they said ” okay, that will be $1,793. I swear to god, I started laughing uncontrollably.

I called my insurance and they said they didn’t have my records updated with my income( which is insane, since I wouldn’t qualify for the insurance unless they had my income!) They had to update my file, which takes roughly one week.

I couldn’t make this up. I had been in touch with my doctor about it, and they didn’t have any samples, but pulled some strings, and eventually got ahold of two shots. So it put me at one whole month without my Enbrel. That’s not even the bad part. Onto my second complaint.

The blood work my doctor ordered in the first place came back with a problem with my liver functions. Which has never happened. So she cut¬†my Methotrexate in half, cut my pain pills completely. Said to go back up on prednisone( I had finally gotten down to one milligram a day! GRR!) She wanted to keep me on Enbrel for the moment because she didn’t want to change anything while shes trying to figure out what caused the liver problems. So then I went a month without Enbrel too! Bleh.

The worst part is that I went in for¬†new blood work yesterday and they told me my doctor was no longer with the clinic! I was devastated. That will be the third change in doctors in a year. My first doctor decided to leave, and trained a P.A. and that is who I’ve been seeing and she has been amazing.

Since there have been some changes in the clinic, there are three new doctors, and they decided they that they didn’t want the responsibility of a P.A. and they fired her. With no warning!

Now I’m going to have a new doctor that I’ll see next week. And its partly her fault. Bleh. It was just so nice to have a doctor who I knew actually cared and would go beyond her duties. I have no idea what this new lady is like. If I don’t like her, then I’m going to somewhere else.

My sister works at a hospital and several doctors have told her to tell me to go to one that’s about 65 miles from where I live. The one I go to now is about thirty, and is the only one closer. So I think I’ll go for it.