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.

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.

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.  🙂

Another New Knee II

Im finally beginning to feel like  myself again. It’s been eight days since my second total knee replacement. It’s been a rough week but Im finally emerging from the fog of medication and pain.

In fact, today I only took a fraction of the pain medication that I have been on the past week.

I had my left knee  replaced six weeks ago. And…….its pretty much completely healed. I have full range of motion and can walk on it with no pain. It’s still a bit stiff sometimes, but that should go away with time.

It’s really amazing. It’s something that is really hard for me to explain. Since my first symptoms hit me over four years ago, my knees were always my worse joints. My ability to walk was immediately and painfully affected. Each step I’ve taken in the last four years has caused me pain. And I’m not exaggerating. Even on my best days, my knees ached. And now after so long, Im so close. So close to a pain free step.

Just one step.

One pain free step. And then another. And then another.

Just thinking about it overwhelms me. I want to scream for joy. And cry in relief. I want to run to the door and yell out that finally, finally, Im going to be ok.

It’s making it a bit difficult for me to wait on my new knee to heal. It’s being a bit more stubborn than the left. In fact, at the moment, it is still just as bent as it was before my surgery. BUT…..It will straighten. It’s just going to take some intense physical therapy. And Lord knows I’m going to put my all into it.

I’m being a bit silly, because I cant help but be slightly disappointed that this one isnt going as easy as the last. I’ve been waiting for years to put on a pair of jeans, look down, and see completely straight and normal looking knees. Haha. It seems like such a small thing. But it will be a very happy day indeed.

On a brighter note, this knee is stronger than the last one thanks to the physical therapy I’ve been doing with the other leg, so I’m recovering faster in that regard. I can get up and down faster and easier, and with no assistance. It’s bending better and at a faster rate than the other.

Just not straightening.

But I have my usual physical therapist back. She was on vacation last week, so I had two different substitutes. They didn’t even actually touch my leg at all. My usual therapist pulls and pushes and stretches. It is actually extremely painful. But it works. And it always feels better afterwards. So now that she’s back I am feeling more optimistic that it will be straight soon enough.

So overall, everything is good. I don’t want to give the impression that total knee replacement surgery is a breeze and anyone should do it without a second thought. But for me, every bit of pain has been completely worth it. It’s hard for me to complain about things like pain and lack of sleep when I’ve been given such a gift. And my ability to walk pain free again. There is no doubt in my mind that this was the right decision. And Im sure that in another five weeks, Im going to be walking all over the place!

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.

Another new knee

I had my second total knee replacement Monday. It’s been a rough week. And……that is a huge understatement.

There were some serious pain control issues during my hospital stay. There was a horrible horrible nurse who had some sort of personal vendetta against pain meds. So long story short, I check myself out early after sitting all day without any pain meds. I will never use that hospital again.

But now I’m home. I have a home health nurse who is amazing and I am still doing my physical therapy.

This knee replacement hasn’t gone nearly as smooth as the last one. I was expecting it to be much easier, but it’s just not the case.  Im still extremely happy. It’s just through a fog of pain and medication. For the last few days I’ve basically been laying around drooling.

Anyways, I just wanted to write a little update. My next post is actually going to be a guest post. Hope you guys like it. I might start doing them more often.