Ups and down

Its amazing how you can be on top of the world one week, and the next week, R.A. can bring you so far down.

The initial relief I felt from my meds have slowly stopped working and Im in the midst of a hard core flare. The last few of my joints that haven’t been affected have finally jumped on the R.A. bandwagon. Now that my shoulders and ankles are in the mix, the only unaffected joints are my new knees. Jaw, neck, shoulders, elbows, wrist, fingers, hips, ankles, and toes.

On top of that my recent Xrays show joint damage not only from Rheumatoid Arthritis, but from Osteoarthritis as well. I dont even know how it’s possible. Im only twenty four. How is this happening???

I feel, like once again, I let my  hopes up too high.

I have amazing new knees, and I’m still very grateful, but its like my white blood cells want to make it up by attacking my other joints even harder.

Im still so frustrated at the simplest things I cant do. I actually had to miss a grave side service yesterday. Now I’ve missed alot of things in the past couple years. Birthdays, graduations, dinners. But never a funeral. And so that is a whole new low for me.

Im desperately, desperately, trying to stay positive. But I feel like Im loosing the fight right now.

My knee still isnt straight. And my hip pain has made walking almost as painful as before. My rheumatologist gave me the name of a pain management specialist. Im so frustrated I just want to give up. I dont even want to try anymore. Why did I think everything would be solved after my new knees? I never thought everything else would fall apart. But of course. Of course.

There is still a chance that the meds will start working again. It’s only been two months. Im still doing my physical therapy at the clinic and here at home. Im not going to stop of course, but it’s hard to stay motivated right now.

I went out to eat with a friend a couple night ago. The retraunt is right off the highway so it was really loud. A very large man started yelling at us across the parking lot. I looked at my friend and said ” Is that crazy man yelling at us?”

As we got closer, he kept gesturing at me, and said “What happened? Whats wrong with you?”

I swear on my life this happened. And so I tell him and he calmly said “Oh, ok.” and climbed into his car and drove away.

Is this happening to anyone else?

New Knees for Lisa

I just got this link from Rheumatoid Arthritis Guy’s Blog

http://newkneesforlisa.blogspot.com/search?updated-max=2009-07-06T21%3A15%3A00-04%3A00&max-results=4

This is from Lisa’s Blog:

     After 12 years of living with rheumatoid arthritis, I need total knee replacements I can’t afford. So I decided  to throw myself at the mercy of the internet. Can the kindness of friends, friends of friends, and total strangers raise $7,600 and give me my life back?

Lisa has currently raised almost $3,400 towards her goal of $7,600.

________________

Let me say, I understand where she is coming from. I understand the enormous burden of medical bills. There have been many times when I couldnt even afford the bare minimum in medications. Or visits to the Rheumatologist. If it wasnt for me finally getting Medicare, I would still be in the same position. 

And now that I have so recently had two total knee replacements, and know the relief they will give her, I wish I could give her every penny she needs. And now only $4,200 stands in her way.

Who says stuff like that?

I had a bit of a setback these past couple of weeks. Both physically and emotionally. I’ve been trying to stay upbeat, but am still a bit down.

The hip pain that I’ve mentioned seems to only get worse and worse. The option of another replacement has even been tentatively put on the table. It’s something I really would like to avoid. My knee replacements went very well, but I know hip replacements are even more complicated and painful. On top of the R.A., I also have bursitis on my right hip which is making it worse. My rheumatologist gave me a steroid shot, but I think she missed, because it didn’t do any good.

On a brighter note, my knees almost never hurt anymore. Especially the left. Unfortunately, I still haven’t been able to get the right knee completely straightened. It took over a month of intense therapy to get it from 18 degrees from straight to 4 degrees. I had a week and a half break while switching from home health to outpatient therapy. In that one and a half weeks, my knee went back to the eighteen degrees. As you can imagine, my frustration levels are through the roof. As I’m sure anyone who has ever been through this type of surgery knows, the physical therapy has been a very difficult and painful process, and I’ve worked very hard. And all that work went down the drain. Even though I kept up with the exercises I could do. But…. I’m back in outpatient therapy. At the end of the month, it will be a year of almost constant physical therapy and at this moment in times, my knee is still bent. 

So, if anyone has been reading my posts, you’ll know how much I’ve been looking forward to shopping for clothes to show off my new knees. In fact, I’ve thought of it as a sort of gift to myself for making it through these past few months of surgery and recovery. I haven’t wanted to buy clothes until I lost some of the Prednisone weight, but decided to buy a few things to try and cheer me up from the setback from my knee.

I swear this story is true. I couldn’t make this stuff up. After you read this, you might understand why I hate leaving my apartment. Oh, if it was only a one time thing……..Alas, it is not.

So…..I take my wheelchair because of the ever increasing hip pain and because I’m still not at the point where I can stand for a long time. Nowhere near enough time to shop anyway. I felt really good. I had gotten my hair colored and cut a few days before. I had whitened my teeth, and gotten new make up. I felt like I looked better than I had in a long time. And for the first time in an extremely long time, I put some effort into my looks. So I found a few things to buy and went to pay.

The cashier asked for my I.D. because I payed with my debit card. She looks at the I.D. (which was taken pre-prednisone) and she sort of laughed and looked at me like I was trying to play a trick on her.

She said ” This isn’t really you.” giggle giggle.

I knew where this was going, because it’s happened to me several times. So I reply curtly “Yes, its me.”

“Well you’ve certainly put on some weight haven’t you?” I felt like someone punched me in the gut. There were several people behind me in line and my cousin was with me and there were several other cashiers and customers in the immediate area who could hear it all.

I was horrified, and just replied with a sarcastic “Thank you so much for that…..”

This is were it gets bad. You could tell she wasn’t  being hateful. She was just genuinely dumb.

She looked a little shamed, and as if to make it better she looked at me in my WHEELchair and says, “Oh, dont worry hon, you can run that off in no time”

I just looked at her in genuine amazed shock and noticed the other cashiers’ eyes bug out as they quickly averted their gaze. My cousin was really angry and says “She obviously cant.”

So the woman once again realized her foot was in her mouth, and so once again tried to make me feel better by saying ” You know it’s ok you’re in a wheelchair. Sometimes I really wish I was so I wouldn’t have to walk so much.”

I had a million retorts running through my mind, but was just so angry and mortified, I just hightailed it out of there. I tried to laugh it off, because honestly it’s a bit funny looking back. WHO SAYS STUFF LIKE THAT?!

I tried to put it out of my head, but it really upset me. For years, I’ve dealt with this sort of thing. Strangers looking at my legs like I was some sort of circus act. Gasping, and asking what was wrong with me.

In another post about a year ago I wrote about a woman who kept looking at me and then at my I.D. back and forth, and then asked me pityingly, “What happened to you?”

I had thought that once my more obvious signs of R.A. were gone, people would bother me so much. But apparently my weight horrifies them now. People, from strangers to my own grandfather, wont leave me alone about my weight.

It’s like they think I don’t know. That they need to bring it to my attention so I’ll do something about it. Trust me I know. I can’t even stand to look in the mirror. I’m nearly one hundred pound heavier than I was less than two years ago. Im horrified by it. I haven’t been able to lose a single pound no matter what I’ve done. But the only thing keeping me from being completely bed ridden was the Prednisone and I would do it all over again. I would take every pound. I don’t know anyone who can understand the concept of that kind of pain. How can you even begin to explain this sort of thing to a dumb cashier? So I just give up.

All of my friends tried to reassure me, but when I go in public, there is usually a high chance of all my insecurities being pointed out to me.

It’s just so hard to live with this disease and have no one understand it.

My best friend’s sister ( who, like the cashier wasn’t being hateful, just extremely ignorant) was once talking to me about R.A. drug commericals. She was trying to make small talk so she brings them up and starts laughing and said “Aren’t they ridiculous?! I just want to say, God, just take a freakin aspirin and get over it.” Giggle giggle.  She said that to me. Knowing my full story and  struggles. She wants to say that to them. So in other words, she wants to say to me. It’s just ignorance. And usually, I can let these things slide. But this cashier the other day, just wrecked me.

I cried for hours. I’m crying now just thinking about it. Everyone says not to let some dumb cashier get me so down, but I cant help it. My friends were so mad. They wanted to know the store and her name so they could get her fired. I declined the offer. It certainly wouldn’t make me feel any better. They were mad because almost every time I get the confidence up to start going places, something like this happens, and like some sort of turtle, I just pop back into my shell. It’s frustrating to them I’m sure. And rationally, I am perfectly aware of how dumb it is to miss out on things because of my own pride. But I just can’t help it.