Back to school

I’ve been out of the loop due to a dodgy Internet card, but I’ve finally gotten a new one.

Things have improved alot since I last wrote. My hip pain has decreased. A mixture of physical therapy and drugs are finally giving me some relief.

I have been getting out alot lately. It still feels odd to be able to just get up and go when I want to. It used to be that I would go weeks without leaving the house. Now that only happens once or twice a week.

Im  feeling better lately. The R.A. is still active with my other joints at the moment, but it’s getting better than a few weeks ago. My blood test showed that all my markers were through the roof. Lame. It’s better now.

So…….Big news.

I signed up for classes this fall!!!

I’ve been waiting four years to get back to school. I’m unbelievable excited, but still a little scared out of my mind. I met with a woman in the human resources office who runs the Access program for students with disabilities. I just let her know about my concerns as far as the distance I could walk. All my classes will be in the same building which helps, but the parking is a huge issue. Its a tiny lot with only three handicap spaces. And that is one thing I remember from classes before. The parking is always insane. The next closet parking lot is about 200 yards away.

There isn’t  they can do about it. They cant reserve a spot for me or anything, but they were so nice and helpful. I’m going to go ahead and file paper work with them, so that if any problems do arise from mobility issues, they will be able to talk to the professor on my behalf. They were extremely nice. It just felt good to know they are there if I need them.

So I’m taking a painting, a drawing, and a jewelry and metalworking class. I haven’t had an art class since high school. It’s always been my favorite thing though. Then I will have an on-line human rights course, which I did not at all need, but sounded extremely interesting to me. I’m just slowly trying to ease myself back into academic life. It’s been four years after all. And I think my schedule will be easy to handle.

So, I’ll be starting on the 24th. I just really hope my hip holds up and that I can make it through the semester. I really really really want this to work out.

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.

Physical Therapy-Guest Post

Why Physical Therapy is Important

There’s nothing more painful than an injury that requires a surgery, except the actual surgery and the recovery process of course. My brother-in-law met with a really bad accident a year ago; his hip bone was crushed and he had to have a series of reconstructive surgeries in order to be able to even think of walking again. The pain was unbearable for months, and he was bed-ridden and completely dependent on his caregivers for even the smallest of things.

But then, the moment physical therapy entered the picture, there was such a marked difference in both his attitude and his feelings – he was more upbeat, and even though he was still in pain, he was able to grin and bear it. It made me and the rest of my family realize how vital physical therapy is to the process of recuperation after a major surgery, especially those that involve setting broken bones, reconstructing torn ligaments, and others that affect movement at the joints. Physiotherapy is important because:

  • It expedites the healing process: When you start physiotherapy with a good therapist, you start feeling better in leaps and bounds. Although the exercises may be painful at first, when you stick with them, they give you considerable relief from the pain and stiffness.
  • It gives you a sense of achievement: Even if you do your exercises for just 30 minutes or so a day, you feel that it’s much better than just lying in bed and doing nothing. Being active, even in the most minimum of ways, gives you a sense of achievement that is important when you’re recovering from a serious injury.
  • It reduces the pain considerably: The exercises themselves may seem to increase the pain, but the truth is that they are carefully designed to minimize it. If you stop doing them because of the pain, your joints and muscles are never going to get back to the way they were before. And the resulting stiffness and unnaturalness are going to make you ache more than ever before.
  • It improves your range of motion and flexibility: Most physical therapy exercises are structured to improve your range of motion and flexibility when you’re trying to recuperate from a surgery at a major joint like the hip or the knee. If you don’t do them properly, you’re going to find yourself with limited movement and may end up limping for life.
  • It enhances muscle strength: Exercises that come later in your recover period are focused on building strength in your muscles. This prevent you from suffering the same injury again (because you do tend to be weak) and also helps you support yourself using your muscles rather than your bones and joints bearing your whole body weight.

By-line:

This article is written by Kat Sanders, who regularly blogs on the topic of online physical therapy assistant schools at her blog Physical Therapy Blog. She welcomes your comments and questions at her email address: katsanders25@gmail.com.

I can walk.

I’m moving around so well. Even with one good knee. It’s been four and a half weeks since my total knee replacement. And just a few more days until my next one.

My life has already changed drastically. Anyone looking in from the outside might not think that’s the case. But everyday I get out of bed I’m amazed. Every time I walk a hundred feet I am amazed. Every time I can stand more than thirty seconds I am amazed.

The pain I used to have in my left knee was so unbearable that the knee replacement surgery felt like a vacation! I told everyone that I would take knee replacement surgery over the arthritis pain any day.

Today I met my neighbor. A sweet little lady who lives next door. She has some mobility issues also, and my brother takes her trash out and helps her with little things when she needs them. I’ve gotten out so little in the past eleven months we’ve lived here, that I had never once met her. She said she saw me out yesterday and today and that something amazing must have happened.

And it has. Just the fact that I could stand long enough to have a five minute conversation could never have happened before.

My legs have been in such bad shape that it is making the recovery a long and hard process, but one that I am jumping into wholeheartedly.

Every part of my legs from my hips to the soles of my feet have been affected.  And I have been working so hard at getting back into shape. I already have a range of motion of 115 degrees. My doctor eventually wants me at 120 degrees, so I’m almost there.

My right knee is the only thing holding me back. Monday is the day. After Monday I wont have to be ashamed and embarrassed when people look at me. Kids wont stop and stare. People wont come up to me and asked me whats wrong with my knees.

I put on a pair of jeans last week. It was so amazing. I looked down and I had a knee that looked completely normal. It looked like everyone elses.

My stitches were removed a few days ago. My scar in very thin. And much smaller than I was expecting. I thought my days of shorts and cure little dresses were over. No sir. Once Im able to loose this Prednisone weight, I’m going to go nuts! Do you know how hard it is to shop for clothes that work around bent and deformed knees? Its hard. Trust me.

I’m still so happy. I had what should have been a terrible past few days. My doc forgot to call in my pain meds over the weekend. My R.A. is still very active in my other joints since I’m still of my R.A. meds. I was pulled over because my break lights were broken and I got a ticket. And that was some of the milder problems, but I’m still on too big of a high from this miracle of a knee. It’s given me a different outlook. It’s something I hope I don’t lose.  I cant stay upset too long.

Is there anyone who can appreciate walking as much as I do right now? It hardly seems possible.

New Knee Part 2

I keep catching myself grinning when I get out of bed and walk. Every once in a while a small giggle escapes. I have even stood in the middle of the room and balanced on one leg. Because I can. And now that I can get in and out of bed by myself, I find myself doing so more than I probably should.

I have a straight knee. I don’t know if there is anyone in the world who can possibly understand how much it means to me. For years now, my knees have been deformed and bent. As a consequence, I haven’t even been able to stand straight for a very long time now. So I’ve looked something like this…untitled1

Now I have one straight leg and will have another one in just a week and a half! My pain level has already dropped dramatically. If it wasn’t for my other knee, I would be all over the place.

I’ve been progressing in physical therapy. I’ve lined up an exercise bike from a friend of a friend. My exercise options are very limited after surgery. And not just immediately after. From now on. No running, jumping, skipping, etc. Biking and swimming are my only real options. Fortunately, I enjoy both more than anything else anyway.

I just feel like such a load is being lifted. I’m still in a bit of shock. Do you know how it feels when you are standing and you lock your knees? I did that yesterday and it just felt so weird to me because it’s probably been three or four years since I’ve done that. Such a little thing. But I was so excited. I told everyone who I talked to.

This is the best decision I’ve ever made. Im so ready for the other knee. Then nothing will hold me back!

I have couple of pics of my knee. Ignore the rubber chicken in the first pic. It was the day of the surgery, and it was a gift. I was a bit out of it and found it funnier than I should have. The second pic was taken yesterday.

 

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Physical Therapy at Home

Ouch. Ouch. Ouch.

I just had my third visit from my home health therapist. She is one of the nicest people I have ever met. But those tiny little hands are killing me!

Apparently my calf muscle is full of knots and she massages them to help. Its insane. I never knew my legs were so sensitive to touch. I guess it’s because I never poke around back there. And neither does anyone else.

The most difficult exercises are;

1) One knee bent. One straight. Then I have to lift the straight leg up and down 10 times. Then I switch legs.

2) Same exercise except leg goes out instead of up. My hips are fused and dont go very far.

3) Heel stretches of any kind. My heels suck. (I just realized that’s an odd thing to complain about. I don’t like my heels)

Besides that, the hardest part is getting my dog to leave us alone.

Other than that, everything has been great. I had the usual Thanksgiving at my grandmothers. She always cooks the Turkey three days in advance. Then she cuts it up and puts it in the refrigerator. It’s disgusting. But, hey, it’s grandma, so no complaints 🙂  This year we had it at ten o’clock in the morning. Mmm. Cold turkey at ten. Who cares. The family was together. I got to see my favorite cousin( who is more like a little sister) She’s going to nursing school about 6 hrs away, so I never see her. So that was nice.

I hope everyone had a good one.

Rheumatoid arthritis and Dieting VI

I haven’t updated my blog about my weight loss for one reason only. I cant loose any. When I dropped my steroid dose to almost nothing I lost 11 pounds immediately. They fell off. Since then I have not lost a single pound. Not a single stickin pound. I weigh myself every morning. And every morning it says the same damn thing. I haven’t actually gained anymore but that’s hardly enough to console me right now. And even though the puffiness in my face and double chin( its a family thing!) is almost gone, my stretch marks still continue to increase.

My new doctor lifted up my arm and pointed at my stretchmarks and said it was just because of the prednisone. I asked her if there was anything I could do about the weight. I’ve been dieting for months. I’ve been eating an ungodly amount of fruits and vegetables. Practically drowning myself in water. I’ve been swimming several times a week. I had six weeks of physical therapy, and not a single pound is gone!

She said there’s really not much to be done. She said it can take up to nine months after you are completely off the steroids to start loosing weight. Every time I feel like I get close to a goal, another longer one comes along.

I think I want to go back to the awful doctor I went to when I first got sick.  At least I could get some diet pills. Bleh. But I know, I know. There is no easy fix. Im just extremely extremely disappointed. It was a bad visit altogether.

I had a visit with my endochronologist about my thyroid. It went from being a bit undersized to a bit oversized. But he still dosnt think its bad enough to be on medication for. He dosnt think it’s affecting my weight. So I dont know what the problem is. Surely it shouldnt take this long to loose weight. I dont know what else to do.