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.  🙂

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.

And now with Insurance

I had my first visit with my rheumatologist with insurance. My card came in the mail Saturday! I’m in such a good mood. I’m sure I looked like some sort of nut job. I was smiling the whole time. Everyone in the office was excited for me. My doctor had a list of things shes been waiting to do.

I finally had Xrays taken. Two of my neck. Two of my chest. ( I’m not sure what those were for) 3 for each hand. 2 more each knee. 2 for each hip. I couldn’t get into some of the positions though. My right hip wont bend outwards. And my knees wont straighten. The worst part was for the Xrays where I had to stand. The technician was so sweet though. She helped me stand. She held me up because I couldn’t stay balanced when they made me stand straight. I had to take a break after the second Xray. I was in an ungodly amount of pain from standing. But I got through it all. I wish I could have seen them though. I’m curious. The last Xrays I had were two and a half years ago. And the cartilage was almost gone then.

I also had tons of blood tests done. I don’t even know what all. There was something for thyroid. Something for vitamin b deficiency? Definitely something for calcium. And I had to pee in a cup for some odd reason. Ive never done that there. I should get the results soon. My doctor also wants me to see my endocrinologist about my thyroid. She said that may explain some of my fatigue.( Though she thinks it may be depression. Nope. Not it. ) I haven’t been to him in nearly three years. He found a goiter about 4 years ago. But the last time I saw him he said it had not changed sizes and that I should come back in a year or so. So I’ll call tomorrow about an appointment.

I have an order to start physical therapy too. She says its the most important. The order is for 3 times a week for six weeks. I have an appointment tomorrow for evaluation. Im kind of scared though. I mean, just standing makes me scream out in pain. How am I going to be able to handle therapy? I guess I’ll find out.

I also have an order for a bone Density screening. Because of my prolonged steroid use. The osteoporosis center is closed until after the 4th of August though.

 Oh, and I saw a dermatologist yesterday. He gave me a prescription and said it would go away completely. So that’s a relief. Just a rash that is in no way medication related. Woo!

Oh, and my rheummy said she was going to give Enbrelone more month and if it doesn’t do much better then we’re going to try Humira. If that dosn’t do much, then onto Orencia. Or some other medicine I’ve never even heard of. And now I’m going to taper off prednisone completely.

So I’ve had a very busy day. A fantastic day overall. But now I’m exhausted and sore and I’m going to try and go to sleep early. We’ll see if it works.  🙂

The waiting game

I am so good at the waiting game. I’ve been waiting for years….

Ok, I finally got my Medicaid card in the mail. Along with my Medicare prescription drug card. I have not however, received my Medicare card. Its all very confusing. I also cant seem to find any doctors offices that take Medicaid. Though some do take Medicare. But not without a card. Bleh.

My rheummy’s office doesn’t take either, but since I’m already a patient, they agreed to let me continue. I’m glad. I really like the one I’m seeing now. She replaced my beloved doctor a few months ago. I hated her at first. She nearly had me in tears the first meeting. Shes very up front and harsh sometimes. The more I’ve seen her, the more Ive realized that she doesn’t mean anything at all, and I’m probably just being too sensitive. She is obviously a very caring doctor. She goes above and beyond in my book.

Anyways, back to Medicare. Now I can call for a replacement card, but I can only get a recording. There is an option to have a replacement card sent to the address they have on file. But there’s no option to see what that address is. And that’s a huge problem for me in the first place. I’ve gotten dozens of letters lately. Some have made it to my address. Some they sent to a really old address. I still haven’t received those. Some they sent to my sisters address, and I don’t even know how they got that address. I’ve called the office, but cant seem to get anyone on the phone. I’ve left messages. They are never in a hurry to respond.

I talked to a physical therapist. She said Medicare is very picky about what they will and wont pay for. So they are going to evaluate me and see what they can do. But I still need a medicare card before they can see me. I have about five or six letters that mention my Medicare coverage. But none of them are the actual letter I need.

I called a dermatologist. They also need a card. At first they scheduled me for an appointment two months from now. Then I told them about the rash ( the drugs my rhemmy prescribed didn’t manage to do anything) and they rescheduled for first thing Monday. I need to get ahold of a card before then. Bleh.

But anyways, this is a temporary setback. I’m probably just rushing things. But my god, I’ve had health coverage for weeks! And I still havnt been to the doctor. Haha.

Also the girl that gives me my shots went on a vacation with no warning. So I’m really overdue on both my Enbrel and my methotrexate. So there are some tight tight tight knees right now.

Oh, but a change is gonna come 🙂

Oh, thats just perfect.

I received a letter in the mail today dated May 27th 2008. It was from the Foundation who supplies me with Enbrel for free.

They just wanted to inform me that I have been dropped.

No explanation. I will have to call Monday.

Lack of Insurance II

I went to my doctors Wednesday. Its been a few days, but I think I have sufficiently recovered. In fact, I’m feeling pretty good.

My father had to come to town to do some work on our family home that is up for sale. It’s been on the market for almost a year. Apparently, we couldn’t have picked a worse time to sell. Ha. Anyways, his wife sent her credit card with him and said I could pay a hundred dollars on the doctors tab, and then my medicine. I’m raking up quite a tab for Dad and her too. When the house sales, I am supposed to get a small cut. My father owed all of us kids some money from when he used the money our aunt left us when she died. So, we’re just waiting for the house to sell. My step mom has been helping us all bit by bit though, and its coming out of our “house money”

I was also able to drive his truck, so that was another load off my back.

So anyways, normal appointment. She was ecstatic that I was able to lower down to 5 mg of prednisone. She asked me how the Enbrel was working, what hurt, how much etc. Then she asked if I wanted injections. I really should have said no. Even with a discount, they’re are still over $150. But I said yes. I had two. One in my right knee since it’s the worst, and one in my right hip for my bursitis. Left knee and hip would have to wait. So between the doctors fee, labs, and procedures, my bill for just that day will be $650-ish. Add that on top of my $700. Minus the $100 I put down that day.

I don’t care. I was feeling rebellious. And yay for ridiculously overpriced shots! I feel loads better. My right knee is my good knee now. I’ve never had a shot hurt so bad though. I actually cried on that one. I’ve gotten really good at holding that in check. I never cry in public. Oh man, not this time though. The bursitis shot wasn’t too bad. But it took a couple of days to stop hurting. It was very tender for awhile.

Oh, and my feet swelled to massive proportions. My doctor said there wasn’t really anything I could do but keep them elevated.

The biggest kicker all day, was the fact that the reason I was taken off Enbrel for five months was because of a rash that had nothing to do with the medication. Or any of my medication. My doctor isn’t a dermatologist, so she’s been going through a huge book trying to find what she thinks its from. (because I have an amazing doctor) Well, they found it. It looks very similar to the type of reactions people can get from the medicines I’m on. But apparently, its supposed to be relatively contained. And almost always clears up on its own within 3 months. Mine started 8 months ago. So they gave me a prescription that only cost $4, and after two days, its already going away.

I could have been on Enbrel the whole time! My doctor said it was just rotten luck. Yea, and the fact, that I couldn’t get to the dermatologist. My family just kept saying I could wait until I was on Medicaid. Even if that is several months away. Ha.

Anyways, I’m feeling much better now. Feet back to normal. Right knee feeling pretty good. Hip feels pretty good when I’m not sitting. I think the Enbrel is kicking in. I should get my blood results back soon. I’m curious to see how the inflammation markers look. So, yea, I’ll worry about the bill later. Scarlet O’Hara always says ” I wont think about that today. I’ll think about that tomorrow” I like that concept.

Can’t put the needle in.

I started my Enbrel shots again last week. I forgot how much I hate them. Not that I’m complaining. Thank God for Enbrel! But I have always had a very bad phobia of needles. Its completely irrational. I’m not afraid of the pain. Its…..I’m not exactly sure. But I think it’s just the fact that there is a stick of metal poking through skin, muscles, veins, fat, etc. Ugh. I can hardly think about it.

When I was younger I was much worse. It was sort of humiliating really. One time me and my three siblings and very young cousin were at the doctors getting some shot and at one point I ended up on the floor with my feet up trying to fight off a nurse. And that was extremely unlike me. My dad ended up having to hold my arms down. I think I was about six. Afterwards, my three year old cousin sat down very calmly and rolled up her sleeve and let them stick her. I had other shots through the years. None of them had any better results.

I was in a bad car accident once. I was in the passenger side when a truck hit the passenger side of our car going 55 miles an hour. The back of my head was split open and it took 8 staples to close it up. I was ok through the whole thing, but I broke down like a baby when they had to give me the shot to numb my head so they could give me the stitches. It doesn’t even make sense. I couldn’t even feel the needle through the pain of a split open noggin. But that didn’t stop me from breaking into hysterics. I was 18 at the time.

So when I got sick, you can imagine how I felt when they started drawing blood. It took me soooo long to even let the nurse near me. I would be all worked up and then they would draw so much that I would puke every time.

Eventually, when I was at a very low time I agreed to start taking methotrexate in an injectable form instead of pills because it was supposed to be more effective. And it is. But I still cant do it to myself. I have on several occasions. But its never gotten easier. It only gets harder. And it takes me longer and longer to psyche myself out. Sometimes I literally sit there for hours trying then putting it down, trying again. I get so frustrated with myself. Then I start crying. Sort of pathetic really. I don’t know what I do wrong, but almost every time I do it myself I end up with a huge dark purple bruise and it hurts like hell. I have a friend who is in nursing school who gives it to me now.

The extra weight has helped out a lot too. The extra tummy cushion is great. I literally can not feel the shot. Its the smallest needle known to man too. So easy. As long as I dont do it, that is.

But the Enbrel shot? Man, does it hurt. The needle is a little bigger, and they always feel dull. They come in pre-filled syringes. And it is like injecting acid into your body. I mean, it burns like liquid fire. But only for a minute or two. Afterwards, there is almost always a large red raised area. It usually last a day or two. And it’s all well worth it. That is of course, as long as I don’t have to do it myself.

Anyways, last time I was on Enbrel, it took about three months to feel any results, but even after just three months, my inflammation markers were normal for the first time in years. That is really a miracle. I had to stop taking it because it caused psoriasis. But at this point, we are not going to worry about that. I just need something to happen. So, I am back on it, and I feel a small improvement already.

My steroid dose is down to 15 mg a day. Which has made my white blood count go down, but my inflammation markers to go up.

I’m also off of sulfasalazine, and hydroxychloroquin. I would have thought I’d feel horrible this week, but I think the Enbrel is already kicking in. Im hopeful.

 

 

 

Happiness

I had a doctors appointment today, and I’m going back on enbrel!!!!!! Side effects be damned.

Starting……..tonight!

My white blood count is dangerously high, therefore i must get off the prednisone!!!!!! Oh happiness, happiness, happiness.

Good things can happen. Haha.

Disabilty

I am so nervous. I am so unbelievable scared.

I just spent an hour on the phone with my lawyer. My case is Monday, and my entire life is dependant on it.

I know I should not have anything to worry about. I have always been honest about everything I’ve written and said to the social security administration.

But I’m still so nervous, I’m fighting back tears. My hand are shaking so bad I can hardly type. The knot is back in my stomach. I can not even think about this going badly. I honestly can not do this any longer if I don’t get help. I am so proud of myself for holding myself together for so long, but I know I can not keep going if something big doesn’t change. I absolutely can not continue like this.

God, I never think like this. I’m an emotional wreck right now.

But you know, since I became sick, Ive always held it together because I’ve had something to look towards. At first, I just focused on the fact that I would be ok once I was able to start seeing a rheumatologist regularly. Then it was “I’ll be ok once these meds kick in.” When these hopes started vanishing it became “I’ll be ok once I can afford better meds” When it became clear that was not going to happen it became “I’ll be ok once I get Medicaid.” Then there was “Everything will be better once I get on Enbrel.” Its supposed to be a miracle drug.

So those hopes have held me together through over two years of pain and misery. And they have all failed me. They have all come to nothing. And in the back of my mind I always have the hope of returning to school. And over the past few months, I have had to come to the realization that I may never be better.

And all my hopes, and all my dreams, everything I wanted for myself…..they may never happen.

And I had some big dreams.

Current Meds

Id like to mention the medications I am currently on. My current treatments include:

8 mg shot of methotrexate once a week. ( I have been on methotrexate for over 2 years now. Its the only medication Ive been on consecutively)

I take two tablets of Hydroxychloroquine (Plaquenil) a day ( I have been on this drug for three months now. I have yet to notice a difference.  They say it can take up to six months for some medications to start working. That’s such an insane concept, I cant even wrap my mind around it)

3 tablets of Sulfasalazine (Azulfidine) a day ( I only recently started taking this again. I have tried two other times. Both times it was too hard on my stomach. I would be vomiting within an hour. So far so good.) 

20 mg of prednisone a day( I have been on this dose for over 7 months. Anyone who has ever been on this will understand the horrors. Ill refrain from explanations for the time being) 

I’m also given a low dose of hydrocodone. Its not nearly enough to do the job. Hell, it hardly takes the edge off, but I understand my doctors hesitation about upping the dose. Blah Blah Blah.

I have now been off of Enbrel for 3 months. Adverse side affects and all. I was only on it for 3 months, but I noticed the improvements. Now I notice the complete lack of improvements. I am currently working on receiving help paying for Humira. Hopefully it will do the trick.

At the moment, my knees are the worst joints affected. They have already become deformed. I don’t remember the medical term at the moment, but my knees no longer straighten.  So just imagine to yourself how silly I look when walking.

At the moment I can not stand for more than a minute.  I can not walk more than a hundred feet at a time. My hips usually begin to hurt after sitting in on spot for too long. They have already began to ache from just sitting here long enough to type. I also have bursitis in my hips. I usually need to rotate between sitting and laying down through out the day.

My elbows are also permanently bent. At the moment, the prednisone is working perfectly ok for all of the smaller joints though. My right shoulder is completely off due to the cane I walk with.

I’m going to record my progress here, so I need to get all this down. Its not about complaining. ( I also constantly feel the need to justify myself when I complain. I’m sure Ill write about that eventually)