Another Battle

My life has changed so drastically in the last few months. Sometimes I go an entire week without even thinking about this blog. And when I do, I never have time to update anyway.

I have found it both thrilling and challenging to adjust back into the “real world”. The last few years were all about the things I couldnt do. The steps I couldnt make. Both literally and figuratively. I was so wrapped up in my illness and what I was missing out on. For years, my heart ached when I thought of everything that was passing me by. 

And while I usually have a very upbeat attitude, Im not ashamed to admit there are many many times when I was just plain angry, and resentful. I’ve felt cheated and sometimes downright grief-stricken. My R.A. was so severe and so fast acting, that within just a year I had very little cartilage left in my knees, and things have continued on in the same way for the last four and a half years.

I realize that since I was first hit with R.A., I’ve treated every problem that has come my way as a type of battle while completely ignoring the war. I’ve  fought for medication, health insurance, and knee replacements. I viewed them all as an end all. Something that would save me, fix me, make me whole again.

I’ve found it very very difficult to face the fact that this is my life. It’s something I’m still struggling with. After four and a half years, it is something I still want to fight against. Dont get me wrong, I still love my life. I love who I am as a person. And I love the support I have around me. But my biggest struggle with R.A. has always been accepting my life as it is and not how I want it to be. That this problem is long-term and will be one struggle after another. That I have had major victories like getting health insurance, or new knees, but that in the end there will be another struggle.

Im coming to grips with this though. Looking forward to my next battle. Haha. I think I like that term. I think it deserves a capital letter. Battle. My next Battle will be for my hands. I have an appointment in two days to set up everything for my new Rituxin infusions.

If anyone has read my blog, you may know of my complete and absolute terror when it comes to needles. And how I almost didnt want surgery because of the I.V.! I agree. It’s completely ridiculous. But….just the way I am. So to agree to IV infusions, I really have to be losing my Battle. And unfortunately I am. R.A. already won my knees. I’ll be damned if it gets my fingers.

My fingers. I can’t even think about my fingers “going”. I find myself holding up my hands for daily inspections. I can already see slight deformities. Knuckles so swollen that the tips of my fingers never touch. So I need drastic help. My rheumatologist is even talking about joint therapy with Rituxin, humira, and methotrexate. At this moment, I’ll try anything that helps.

So that where I am at the moment. Still greatly improved after knee surgery, but fighting another Battle.

The Joys of Medication

Its been almost two weeks since I have been allowed to start taking my R.A. meds again. Namely methotrexate and Humira. I’ve had two doses of Methotrexate and one of Humira. This is my first attempt at Humira though. But I’m already loving the fact that I only have to have the injection every two weeks instead of weekly.

I’m already feeling improvements in my hands, wrists, and elbows. I still have three stubborn fingers, but they should get better with time. I know there are alotof people who hate the idea of taking these types of medication. In fact, at least one rude man likes to write to me occasionallyabout the evils of medication, etc. But the fact of the matter is, that after four years of this disease, I know what works for my body. And the only thing that has ever worked for me is the medication.

My father is a huge believer in alternative medicine. Overbearingly so. I have tried many many many things. I have tried almost anything you could possibly think of. Everyone’s body is different and everyone has the right to seek whatever means available to them for treatment. I would never tell anyone who is fighting R.A. holistically that it is useless and a waste of energy and money. Because it does wonders for some people. But it’s not for everyone. Just like pharmaceuticals aren’t for everyone.

I’ve had to argue the point with my Dad until it’s become a sore subject. It’s also an issue online. Bottom line is that I know my body. I know what has given me relief. And I know what hasn’t. I have never had a single negative reaction from any medication in the past four years. (Besides weight gain) So maybe I’m biased, but I’m throwing my towel in with the side that helps me feel less pain. Period. And I don’t regret it. If some of the people who talk down at me for my preference spent one days in my shoes, they might think differently too. 🙂

In other news, it’s been three weeks since my right knee replacement. It is finally starting to get straight! Slowly but surely. Tomorrow I have my follow up appointment and should be able to have my stitches removed. Walkingis still difficult because of my hip pain, but I have an appointment with my Rheummy on Tuesday. As my grandfather would say, I have “a touch” of bursitis in the ole hip. So a shot may fix me up nicely.

My left knee is doing fantastically. I have full range of motion, and have regained alot of strength. I’ve been Miderma-ing the hell out of the scar. There still have not been any complications in the slightest. I know alot of people have had it rough with their joint replacements, so believe me, I know how lucky I am.

So I’ve made a list of three health goals for this summer.

1)Do well enough in rehab so that I can take some art classes at the community college this Fall. Getting back to school has been my one big goal since I was forced to quit. I know Fall will be too soon for the University, but I think slowly readjusting back to school life through the community college will be good.

2)Get my hip pain under control. It’s the only thing holding me back now.

3)Get completely off the Prednisone, and start losing some of the weight I’ve gained. Two years of non stop high doses of steroids= roughly eighty five extra pounds. I still can’t stand to look in the mirror, so it’s good to know that I’m at the end of the hell that is Prednisone.

I think they’re realistic goals. I have complete faith in myself. Even if I cant accomplish all three, it wont be from lack of trying. That’s for sure.

Relief

I had a follow up appointment with my Rheumatologist today. Everyone was so excited about my knee! Im on week eleven without my R.A. meds with the exception of Prednisone. And it will be at least four more weeks.

It’s been so worth it.

Now that my most painful knee is out of the equation, I’m handling the rest relatively well. It’s hard to be annoyed at the morning stiffness when my new knee is coming along so nicely.

I was a bit naughty and drove myself to the doctor. I’ve been told driving was out of the question, but my left knee was the one operated on and I don’t use that leg when driving anyway.

On my way home it finally hit me. What a miracle this new knee is. And I started bawling like a little baby. I had to pull over. It’s like I could actually feel the weight coming off my shoulders. I have never cried out of happiness or relief, but today I did.

Only two weeks after surgery and Im already getting around on my own. And that’s with just one good knee and no meds!

I cant even imagine how amazing I’m going to feel in another couple of months. It’s so close.

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.

Breakdown at the doctor’s office

So, I’ve never actually cried in front of a doctor before now. In fact, a problem of mine is that I always try to downplay my pain to people around me. ( There are only a few people close enough to me that I can actually be honest with)

After the worst night of my life last year ( You can read about it here) https://raandme.wordpress.com/2008/06/27/rheumatoid-arthritis-and-stress/ , I called my doctor. She asked me how I was doing and I said something along the lines of  “Oh, I’m ok. I’m just having a bit of a bad time” I have no idea why I do that. The woman I was staying with told me to cut it out and to at least me honest with my doctor for goodness sake. How can I expect to get the right treatment if I don’t even tell her how much pain I’m in. I had to admit she made sense.

So I had a doctors appointment last week and I had to see a new doctor. I’m so upset by the visit, that I haven’t been able to make myself write about it. I just start crying again. The poor woman. I still feel like a complete idiot. But after she told me there wasn’t anything she could do about the weight right now, I asked her what the plan is with my knees.

I recently went through six weeks of physical therapy. I havnt updated with pictures from week 4-6 because of the coma my computer was in. And unfortunately it is suffering from complete organ failure. Not to mention amnesia. So I cant upload at the moment.

ANYways, there wasn’t much of an improvement after week three anyway. I feel better. I’m able to walk farther and longer. I actually made it a block and a half last night after a play! I barely made it, and I’m feeling the pain today, but my god! What a difference. It would never have been possible before therapy. So while there were improvements, they are still permanently bent. I still look like I’m preparing to jump. People are still staring at me, and I still hate it.

My physical therapist said my knees will probably never straighten fully again. And that they wouldn’t even get much straighter. Apparently it’s not exactly reversible. The reason it got so bad was that apparently, unconsciously I was protecting my knee by keeping it bent a bit. Because it hurt to bad otherwise.

I had a ton of Xrays taken two months ago and I’ve been waiting for the results. She pulled of the radiologist report for the eighteen Xrays, and it was exactly two sentences and said that there was evidence of R.A.

I said ” Thats all it said? Eighteen Xrays, and they tell me I have R.A. I already knew that. What was the point? ”

The other sentence said something about the bones in my knees. Fortunately the bones were not too damaged. Its everything surrounding it that’s damaged. Ligaments, etc. So since the actual bones are not that bad, I don’t qualify for knee replacements. So basically what it comes down to is that I have to keep looking like this! For god knows how long!

Now I’m upset again. The only way I made it through the wait to get on Medicare is by hoping that once I got on it and had proper medical treatment, I could get better. Not healed of course, but better.

I guess I’ve been painfully naive. I guess it was silly to think that. It comes down to the fact that its just too late. They have been like this too long now to do anything about it.  I don’t want to complain and sound like I’m pitying myself. But I do want to be honest. It’s the whole point of this blog. And I dont mean to wax melodramatic. I keep trying to put it out of my head.

It just that now I don’t have anything to look forward to. No next step to make it to. And now I don’t know what to do.

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 🙂