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.

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Rheumatoid Arthritis and Dieting V

I’ve lost another six and a half pounds. Yay for me. I started a juicing routine. My dad does it whenever he wants to loose weight. He lost eighty pounds a few years ago with it.

I can loose a pound a day when I stick to it regularly. It is a very good way to cleanse.

So here’s what I put in the juice. I have the perfect formula. I finally got it to where I don’t have to choke it down while trying not to vomit.

Here’s what I use. And some links to the health benefits.

I use 2 green apples. 2 red. http://www.whfoods.org/genpage.php?tname=foodspice&dbid=15#healthbenefits

1 Large beet. Stems and all. http://www.ezhealthydiet.com/beet-nutrition.html

1and a 1/2 to 2 pounds of carrots http://www.whfoods.org/genpage.php?tname=foodspice&dbid=21#healthbenefits

Half a bunch of fresh spinach http://www.whfoods.org/genpage.php?tname=foodspice&dbid=43#healthbenefits

2 lemons http://www.whfoods.org/genpage.php?tname=foodspice&dbid=27

This makes about 32 ounces of juice. I really should do it at least twice a day. But I usually only manage once. Its good to have before a meal. It fills you up more. Celery and cucumbers are also really good to juice with. But they’re both too hard on my upchuck reflex. So I leave them out.

Total weight lost= 10.5 pounds

Rheumatoid Arthritis and Dieting IV

Ok, I’m aware that this is hardly worth posting. But I am excited.

I have been pretty much sticking to a diet. And while I have still not lost any weight, I finally stopped gaining!!!!!! Which is huge. I’m so glad to be almost rid of this evil foul horrible medicine. Damn it for being so effective though.

Total weight gain in 10 months= 84 pounds. I wonder if I can lose it all in the same amount of time. I feel like thats a reasonable goal. Wish me luck!

Rheumatoid Arthritis and Dieting

I may be getting ahead of myself ( I’m still at a 7.5 mg prednisone dose) but I started my diet again. It’s very simple and it always works. The first two weeks are really just about cleansing. I’m allowed water, carrots, apples, and black beans. I picked carrots and apples because they’re cheap and it’s about the only thing I can handle for that long. Especially the carrots. After awhile you don’t even taste them. Anyways, the black beans are great for protein. I wouldn’t want to make myself sick.

When I first got sick, and after I started my first found of steroids, I complained to my doctor about the weight I was putting on. She was very sympathetic. Said she understood, and to my surprise she wrote me a prescription for some heavy duty dieting pills. Then she told me to take advantage of them because she only gave me enough for two weeks. She said to just eat a little something in the morning. Maybe a pop tart or toast, and then the pills should curb my diet. That’s right. An actual medical doctor told me to eat a pop tart and then starve myself. I was working at a nursing school at the time. Oh man, was my boss pissed when I asked her about it. She told me on no uncertain terms, that it would be ridiculous to listen to the doctors advice. She told me not to even fill the script.

I wasn’t going to. Until I couldn’t even fit into the bigger size pants I had bought, and I was getting tired of the looks I was getting at the pub where I worked. Well I went for it. I only had enough for two weeks. And man, it worked. I lost all the weight plus some. I got alot of compliments. Made me feel good. Then I was at work at the school and started getting very dizzy all the time. And I actually blacked out. Very scary. It lasted all of 3 seconds, but it was obviously a really stupid thing to do to yourself.

I knew it was at the time.  I just felt like with my body rebelling against itself, the least I could do was keep it looking normal. Well this diet works alot better. Ive done it a few times in the past. Only once while on steroids though and that was the only time it hasn’t worked. It was a few months ago and I was still on a 20 mg a day prednisone dose, and after two weeks this diet I still managed to gain 10 pounds. Yea, that was a low point.

So I’m still on 7.5 mg, but I’ve got to try something. I’m miserable. So we’ll see if this helps any.  I’ll keep it posted.