One of the hardest things with EDS and it's effects on my body is physical therapy. Even since before I started having surgery after surgery my body would compensate for the lack of stability in my joints. Because of that, a big part of rehab for me is re-learning how to use my body. For example, when I'm doing an exercise that is supposed to work my glutes (this is a big issue for me) I rarely feel a traditional exercise in the muscle group that is supposed to be working, I'll feel it almost everywhere else, my calves, my back and especially my foot if it's a weight bearing exercise. Physical therapy for me, takes a lot of creativity and a lot of extra thought on just how to isolate my muscle groups that need strengthened and how to work them until fatigue. Most importantly, how to do that without making another part of my body suffer, like my back which often holds back which exercises I can do because of the stress I put on my back to compensate for everything else.
Yesterday my physical therapist told me he was writing a report on the top 10 most challenging disorders to work with in physical therapy. Because of me and lovely EDS, he added Ehlers-Danlos Syndrome to that list.
Today I have multiple appointments. I'm going to my PA to have my incision checked, then off to physical therapy again. Then I'm going to my compounding pharmacist to figure out some abnormal levels I have from when I got a ton of blood work done before my December hip surgery.
Thursday, March 31, 2011
Wednesday, March 30, 2011
Incision Update
My incision is looking better, it's not great, but it's better than what it was a week ago. I'm still on antibiotics, which make me nauseous every time I eat, but they seem to be doing their job with the infection. My incision hasn't closed up anymore, but there isn't as much granulated tissue (which was preventing my incision from closing), and it doesn't seem to be as oozy. Both good things. When I change my dressing there is a little bit of blood, which is a good thing and shows signs that it's healing. Before there wasn't really any blood, just excess fluid.
I'm going to PT later today and then again tomorrow. Also, tomorrow I go to see my old knee surgeon's PA again to have my incision checked and make sure it's moving in the right direction.
I'm going to PT later today and then again tomorrow. Also, tomorrow I go to see my old knee surgeon's PA again to have my incision checked and make sure it's moving in the right direction.
Thursday, March 24, 2011
Angry Incision
I my PA today, here in town. She put me on super antibiotics which treat a wide spread of infections. She doesn't think I have a huge infection, or something like MRSA, but this will for sure clear anything up.
On top of the antibiotics I have to do a special dressing change twice a day. It's a wet-dry dressing. Basically I pour a saline solution over my incision near the problematic area. Then I let it soak in for a little then dip a wick (special, sterile, gauze-like string) into the solution and pack it lightly into and over top the open, infected part of my incision. Finally a gauze like padding goes on top and it gets wrapped with an ace bandage.
The point of this dressing is to lift up the fluid and particles so the the infection can heal, and the incision can finally properly close up. The solution makes the incision wet at first, of course, but then it dries it out which is how it helps to stop the fluid build up.
There are three other spots on my incision that aren't open or infected, but are not closed as tightly and nicely as the rest of my incision. Those are most likely due to a suture that my body rejected, so it's trying to work it's way up to the surface. I just have to watch for that and pull it up if it comes up enough.
The incision is defiantly something to watch and it's good that I got in so soon, but it's not a HUGE problem. This treatment should clean up my incision nicely. I'm going to be seen back in the office next week just to make sure everything is moving along as necessarily.
On top of the antibiotics I have to do a special dressing change twice a day. It's a wet-dry dressing. Basically I pour a saline solution over my incision near the problematic area. Then I let it soak in for a little then dip a wick (special, sterile, gauze-like string) into the solution and pack it lightly into and over top the open, infected part of my incision. Finally a gauze like padding goes on top and it gets wrapped with an ace bandage.
The point of this dressing is to lift up the fluid and particles so the the infection can heal, and the incision can finally properly close up. The solution makes the incision wet at first, of course, but then it dries it out which is how it helps to stop the fluid build up.
There are three other spots on my incision that aren't open or infected, but are not closed as tightly and nicely as the rest of my incision. Those are most likely due to a suture that my body rejected, so it's trying to work it's way up to the surface. I just have to watch for that and pull it up if it comes up enough.
The incision is defiantly something to watch and it's good that I got in so soon, but it's not a HUGE problem. This treatment should clean up my incision nicely. I'm going to be seen back in the office next week just to make sure everything is moving along as necessarily.
Wednesday, March 23, 2011
Incision Troubles...Again
I thought my incision was clearing up, but it's not looking like that. I woke up yesterday morning and my incision had oozed all the way thorough my steri strips, gauze pad and ace bandage. Not a good sign.
By the time I go to PT (in the afternoon) it was looking better, but still not great. My PT said to call my knee surgeon and see what they thought, he thought I needed to be seen by someone to make sure it's not and infection.
I'm going to see my first knee surgeon's (he operated on bother knees, the first time; he's in town) PA (physician assistant) tomorrow. They think it's most likely a superficial infection, on the top skin layer. Since I don't feel ill and I don't have a fever it's most likely that as opposed to an underlying infection, more in my knee.
We'll see what happens tomorrow. I'll most likely be put on antibiotics and it will hopefully clear up quickly. It's important to get this cleared up, not only because having an infection isn't a good thing, but because with this open, oozy part of my incision I can't push my range of motion, and I have to hold off on several exercises to avoid popping my incision open more.
By the time I go to PT (in the afternoon) it was looking better, but still not great. My PT said to call my knee surgeon and see what they thought, he thought I needed to be seen by someone to make sure it's not and infection.
I'm going to see my first knee surgeon's (he operated on bother knees, the first time; he's in town) PA (physician assistant) tomorrow. They think it's most likely a superficial infection, on the top skin layer. Since I don't feel ill and I don't have a fever it's most likely that as opposed to an underlying infection, more in my knee.
We'll see what happens tomorrow. I'll most likely be put on antibiotics and it will hopefully clear up quickly. It's important to get this cleared up, not only because having an infection isn't a good thing, but because with this open, oozy part of my incision I can't push my range of motion, and I have to hold off on several exercises to avoid popping my incision open more.
Wednesday, March 16, 2011
I'm on my own two feet!
I'm ditching the wheelchair, ditching the crutches. I'm on my own two feet now.
This weekend I started walking without the crutches, in my brace, locked out. It's not as sore anymore, and I pretty much don't having any pain now. I've stopped using the wheelchair at school, which is going well.
I'm starting to get more back pain. I've had off and on SI joint (lower back, it's a joint that not supposed to actually move. Mine does which is why I have pain) pain for the past couple years. Recently, my SI joint pain started to come back as well as more general back pain bilaterally along my spine. Sitting in the wheelchair all day defiantly made the pain worse, which was one reason I was ready to ditch that thing. My back pain has gotten worse, but I think it would be worse than it is not if I was still in the wheelchair all day. I have to really work on my core because I arch my back out every chance I get to compensate. We're going to continue to watch it closely to try to prevent any damage.
Yesterday was 4 weeks post-op exactly. Between the next couple weeks I'll be able to start driving again. I need more range of motion and I need more quad strength before I can start.
Even with the back issues, which I'm used to, I'm very happy with how my recovery is going. My knee feel pretty good and I know when I get more quad strength that will only improve.
This weekend I started walking without the crutches, in my brace, locked out. It's not as sore anymore, and I pretty much don't having any pain now. I've stopped using the wheelchair at school, which is going well.
I'm starting to get more back pain. I've had off and on SI joint (lower back, it's a joint that not supposed to actually move. Mine does which is why I have pain) pain for the past couple years. Recently, my SI joint pain started to come back as well as more general back pain bilaterally along my spine. Sitting in the wheelchair all day defiantly made the pain worse, which was one reason I was ready to ditch that thing. My back pain has gotten worse, but I think it would be worse than it is not if I was still in the wheelchair all day. I have to really work on my core because I arch my back out every chance I get to compensate. We're going to continue to watch it closely to try to prevent any damage.
Yesterday was 4 weeks post-op exactly. Between the next couple weeks I'll be able to start driving again. I need more range of motion and I need more quad strength before I can start.
Even with the back issues, which I'm used to, I'm very happy with how my recovery is going. My knee feel pretty good and I know when I get more quad strength that will only improve.
Saturday, March 12, 2011
I'm Vertical
Although I'm still using my wheelchair at school, other than that, I'm vertical. I've been leaving my wheelchair at school, then using crutches to get into school. I used crutches when I went to PT on Thursday. I'm not a fan of crutches, whatsoever, and lets be honest, the wheelchair is even lower down on that list, so yesterday I started just walking in my brace without them. My surgeon said that if I have the brace on and locked, I can't do any damage.
My knee is still sore and there is still a lot of strength I need to gain, but I don't have any true pain anymore. I haven't taken my pain medicine since Tuesday, I've been taking Advil occasionally, but no more than twice a day. It feels really good to get out of the wheelchair and to be able to ditch the crutches, at least around the house. Being able to bear weight through my leg will also help me gain strength in my quad, critical for my recovery.
My incision has been slightly problematic, but nothing huge. Like I said when I went to Cleveland, there is a part of my incision that wasn't completely closed so I'm keeping a steri strip over it to keep it in place while it heals. Slowly, the top part of my incision started to seem like it was doing the same thing and has been a little juicy. My physical therapist had me put more steri strips over the problematic areas and said to watch it. Most likely, it's just taking a little longer to fully close and be healed. There is a chance that it could be getting infected, so if I start feeling sick that would most likely mean that's what's going on. If so, I would just go on antibiotics and it would clear its self up. Because of this I'm not going to push my flexion exercises (range of motion, bending my knee) too much to avoid completely opening the incision.
My knee is still sore and there is still a lot of strength I need to gain, but I don't have any true pain anymore. I haven't taken my pain medicine since Tuesday, I've been taking Advil occasionally, but no more than twice a day. It feels really good to get out of the wheelchair and to be able to ditch the crutches, at least around the house. Being able to bear weight through my leg will also help me gain strength in my quad, critical for my recovery.
My incision has been slightly problematic, but nothing huge. Like I said when I went to Cleveland, there is a part of my incision that wasn't completely closed so I'm keeping a steri strip over it to keep it in place while it heals. Slowly, the top part of my incision started to seem like it was doing the same thing and has been a little juicy. My physical therapist had me put more steri strips over the problematic areas and said to watch it. Most likely, it's just taking a little longer to fully close and be healed. There is a chance that it could be getting infected, so if I start feeling sick that would most likely mean that's what's going on. If so, I would just go on antibiotics and it would clear its self up. Because of this I'm not going to push my flexion exercises (range of motion, bending my knee) too much to avoid completely opening the incision.
Tuesday, March 8, 2011
Post-Op Appointment
I went to Cleveland today for my post-op appointment, I'm 3 weeks post-op now.
I had to have some rather unpleasant x-rays before my appointment so that they could see how my bones (from the osteotomies- cutting bone) were healing. Usually x-rays are a painless easy thing to have done, well not this one. For two of my x-rays I had to bend my knee at about 30 degrees, which shouldn't have been a problem since that's about where I am right now, but the x-ray tech was, for lack of a better word dumb and oblivious to the fact that I had just had surgery and bending my knee aggressively was not pleasant. I was laying on my side and needed to bend me knee, laying on my side. I didn't have enough strength to bend it myself in that position, so she had to do it. Well instead of doing it nice and slowly, she just basically jams my knee as hard as she can to try to bend it. Of course, then I get completely still because it's extremely uncomfortable. After several attempts to push my knee farther than comfortable, as I'm about ready to jump off the table, she brings in my surgeons PA (physician's assistant) who just simply gently and slowly bends my knee, no problem. Imagine that!
My actual appointment went much better. I got my sutures out, my incision looks pretty good. There is one spot in the middle of the incision that isn't healed quite as well as it needs to be. It's not completely open, but it's not completely closed, so I just have to keep a steri strip over it to secure it, no big deal. I'm allowed to take a bath now, which I'm looking forward to. It's one of those little things that makes you feel like you're really getting back into things, sponge baths and washing my hair in the sink just isn't the same.
I'm allowed to bear weight with my brace on and in the locked position (it's a full leg hinge brace). With the brace on and locked, there isn't any way I can do any damage. In 3 more weeks I'll be able to get out of the brace completely and walk without it. I have no more flexion, range of motion restrictions.
My recovery is right where it should be for 3 weeks post-op. I'm going to start short distance (around the house) walking with my crutches, but I'll still use the wheelchair for longer distances and at school. It doesn't hurt to put weight through my leg, but it's difficult to pick my leg up to follow through as I take a step because I'm still weak.
Things are going very well and I'm looking forward to being vertical.
I had to have some rather unpleasant x-rays before my appointment so that they could see how my bones (from the osteotomies- cutting bone) were healing. Usually x-rays are a painless easy thing to have done, well not this one. For two of my x-rays I had to bend my knee at about 30 degrees, which shouldn't have been a problem since that's about where I am right now, but the x-ray tech was, for lack of a better word dumb and oblivious to the fact that I had just had surgery and bending my knee aggressively was not pleasant. I was laying on my side and needed to bend me knee, laying on my side. I didn't have enough strength to bend it myself in that position, so she had to do it. Well instead of doing it nice and slowly, she just basically jams my knee as hard as she can to try to bend it. Of course, then I get completely still because it's extremely uncomfortable. After several attempts to push my knee farther than comfortable, as I'm about ready to jump off the table, she brings in my surgeons PA (physician's assistant) who just simply gently and slowly bends my knee, no problem. Imagine that!
My actual appointment went much better. I got my sutures out, my incision looks pretty good. There is one spot in the middle of the incision that isn't healed quite as well as it needs to be. It's not completely open, but it's not completely closed, so I just have to keep a steri strip over it to secure it, no big deal. I'm allowed to take a bath now, which I'm looking forward to. It's one of those little things that makes you feel like you're really getting back into things, sponge baths and washing my hair in the sink just isn't the same.
I'm allowed to bear weight with my brace on and in the locked position (it's a full leg hinge brace). With the brace on and locked, there isn't any way I can do any damage. In 3 more weeks I'll be able to get out of the brace completely and walk without it. I have no more flexion, range of motion restrictions.
My recovery is right where it should be for 3 weeks post-op. I'm going to start short distance (around the house) walking with my crutches, but I'll still use the wheelchair for longer distances and at school. It doesn't hurt to put weight through my leg, but it's difficult to pick my leg up to follow through as I take a step because I'm still weak.
Things are going very well and I'm looking forward to being vertical.
Monday, March 7, 2011
A Good Day
Today was an eventful day for, the not leave the house and lay in bed for 3 weeks, me. Needless to say, the worst is over.
First of all I went to school for the first time today. I did a half day, 4 classes, and then went home at noon. I was really tired by the time I got home, but I felt good. It feels good to start to get back into the swing of life. Then I went to PT in the afternoon, where I had some great progress.
My range of motion (ROM, or flexion) is at 34 degrees, double what it was on Friday (16 degrees). My quad is firing very well, extremely good sign for me with my usual quad troubles. I was able to do multiple sets of strong straight leg raises, first time I've done those post-op. I also did some side lying leg raises (laterally).
I go to Cleveland tomorrow to see my surgeon. My PT thinks he's going to allow me to bear some weight, which is exciting. So far today I've only taken my pain medicine once (when I got home from school today), most likely I'll take another before I go to bed and that will be it. Hopefully I won't need them too much longer.
Overall, things are finally turning the corner. I'm making progress, my pain is getting better and getting around is a little easier. Looking forward to walking, hopefully very soon.
First of all I went to school for the first time today. I did a half day, 4 classes, and then went home at noon. I was really tired by the time I got home, but I felt good. It feels good to start to get back into the swing of life. Then I went to PT in the afternoon, where I had some great progress.
My range of motion (ROM, or flexion) is at 34 degrees, double what it was on Friday (16 degrees). My quad is firing very well, extremely good sign for me with my usual quad troubles. I was able to do multiple sets of strong straight leg raises, first time I've done those post-op. I also did some side lying leg raises (laterally).
I go to Cleveland tomorrow to see my surgeon. My PT thinks he's going to allow me to bear some weight, which is exciting. So far today I've only taken my pain medicine once (when I got home from school today), most likely I'll take another before I go to bed and that will be it. Hopefully I won't need them too much longer.
Overall, things are finally turning the corner. I'm making progress, my pain is getting better and getting around is a little easier. Looking forward to walking, hopefully very soon.
Thursday, March 3, 2011
Physical Therapy
I went to PT today and things went pretty well.
There's not a whole lot I can do now, but I was able to do what I needed to do. I did some quad sets, which my therapist was surprised I had as much strength as I did. It wasn't great, and it's defiantly atrophied from surgery, but since I usually have a hard time turning on my quad post-op it's a good sign. I also did some glute sets and TAs (lower ab contractions) to keep up my core strength. Lastly, I did some flexion to work on my range of motion (ROM). This was the first time that I bent my knee at all. It wasn't painful necessarily, but my knee is very tight since I haven't really moved it for two and a half weeks. I was able to get to 16 degrees of flexion, my restriction is at 30 degrees right now. Because of EDS I don't have to push the flexion too much because being loose is not an issue for me, even if I wanted to I don't tighten up.
It seems like I'm finally turning the corner. I'm still on my medicine every 5 hours, and at least today, I'm not able to stretch that out another hour. It's getting a little easier to move around, although I still need a lot of help and I can't really be left alone yet, I can see the light at the end of the tunnel.
There's not a whole lot I can do now, but I was able to do what I needed to do. I did some quad sets, which my therapist was surprised I had as much strength as I did. It wasn't great, and it's defiantly atrophied from surgery, but since I usually have a hard time turning on my quad post-op it's a good sign. I also did some glute sets and TAs (lower ab contractions) to keep up my core strength. Lastly, I did some flexion to work on my range of motion (ROM). This was the first time that I bent my knee at all. It wasn't painful necessarily, but my knee is very tight since I haven't really moved it for two and a half weeks. I was able to get to 16 degrees of flexion, my restriction is at 30 degrees right now. Because of EDS I don't have to push the flexion too much because being loose is not an issue for me, even if I wanted to I don't tighten up.
It seems like I'm finally turning the corner. I'm still on my medicine every 5 hours, and at least today, I'm not able to stretch that out another hour. It's getting a little easier to move around, although I still need a lot of help and I can't really be left alone yet, I can see the light at the end of the tunnel.
Wednesday, March 2, 2011
Medicine Update
I've been trying, unsuccessfully, to cut back on my medicine. The other night I skipped my 2:30 AM pills, which didn't turn out so well the next morning. I was in a lot of pain and wasn't able to get much sleep.
My pharmacists recommended extending the amount of time between doses before skipping one completely. Yesterday afternoon and all day today I've been able to spread out my medicine an extra hour (5 hours apart now). It seems to be working well. I'm still in some pain, but it's manageable and I'm still comfortable.
Unfortunately, I'm still not very mobile. Hopefully by the end of the week things will change and I'll be able to move around better. The new goal is to be able to go back to school next week.
My pharmacists recommended extending the amount of time between doses before skipping one completely. Yesterday afternoon and all day today I've been able to spread out my medicine an extra hour (5 hours apart now). It seems to be working well. I'm still in some pain, but it's manageable and I'm still comfortable.
Unfortunately, I'm still not very mobile. Hopefully by the end of the week things will change and I'll be able to move around better. The new goal is to be able to go back to school next week.
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