Last Stage

I met with the surgeon last Wednesday. He saw that my knee is still not straight and he said it probably will be eventually and that he has had other patients who do fine without having it completely straight. I asked him for a prescription for massage, which he gave me, but said insurance may not cover it. True enough.  I asked about the next surgery and he said "any time". I said how about early October and he said he'd set it up. I should get calls from Nancy soon, with a date and instructions.

So this means I am on my own right now. No therapy, no future doc visits on this leg. I am continuing with work at the gym and at home, interrupted by trips (right now I am in Las Vegas). It's an odd feeling, free really, and I don't mind it.

Some Good, Some Not so Good

It seems like so much time has passed since last I wrote in here. I think that's because I have been busy doing other things, things unrelated to my body. These activities have worn me out and made me feel like not writing. But worse than that, which I'll explain in a minute.

I have been traveling a lot for events that are hosted by a foundation I belong to (and am vice-president of). I have had to make car trips to Los Angeles and back three times within a short period of time. On the good side, it seems like my knee handles the trips rather well, meaning I feel okay when I get to my destination, not too much stiffness or pain in that knee. And one night, Friday night a week ago,  I slept without drugs and went to sleep quickly. I woke later and was up a bit but overall it was n amazing night, almost like old times. The next two nights weren't as good but still weren't the worst either, and I was still without nighttime drugs.

Lately it's all gone to crap, though. The restless-leg syndrome has accelerated, is affecting both knees, sometimes for hours. And now my back hurts and I feel worse today than I have in a long time. I think all the driving is adding up to the need for possible chiropractic intervention.

But before I go that way I will continue with massage, which I started a little over two weeks ago. I have had two massages using mainly "trigger point" massage, working on those adhesions. I feel some hope for this type massage in helping both with the restless legs and with the straightening of the surgical leg.

I may be at the end of my time with physical therapy. The prescription ran out last Wednesday, two days ago. I see the surgeon again next Wed and it's possible he will not renew the prescription. Mainly because my knee is not straight and in particular is not any straighter than it was six weeks ago. In spite of all of my and Paul's efforts. It's been discouraging but I still think it's possible that I will be able to get it straighter over a longer stretch of time, like one or two years, or even more. If there is no more prescription I am going to be rather more on my own, which will be a little sad. I hope that if I no longer get to see Paul that he will take a little time to talke to Clara, my gym trainer, about where to go from here. I want to keep up with whatever I can.

A Good Day

After several days of feeling both emotionally and physically unwell, I am feeling much better today. The pain in my knees is minimal and I felt enough energy to stop at a hardware store for various items after going to the gym. At home I worked on a graphic design that I have not had the energy to deal with. Perhaps this is a kind of reward for going through so much shit.

So what else might I do? I might make a fleece blanket for a little foster grandson. I might do more organizing of sewing materials. I might make me lunch and veg out a while!

That Restless Leg Thing

I have mentioned getting that "restless leg" feeling frequently, particularly in my "surgical leg". Lately I've been feeling it in both legs, sometimes more in the right than in the left. Today it's been bothering me almost nonstop since I got home from physical therapy at about two.

I occasionally take a look online.  To me, this kind of feeling is not a "medical condition" so much as a discomfort for which there should be some simple solution. I used to think it happened when I had not exercised enough, because stretching and moving around does relieve it. However, I am exercising plenty now and I can't, obviously, get any sleep if I am getting up and wandering around to relieve this symptom.

There does not seem to be a single cause for "restless leg syndrome". Sometimes it is caused by a lack of iron, so today I bought an iron supplement (even though I am no supplement fan). There are other drugs developed for this condition but I am not willing to go there yet. I can't help but think these are neurological drugs that, in the long run, will do more harm than good. Also, they don't specifically target this condition, which is why they don't work for everyone. I hate taking drugs that I may have to take all my life. I'd rather find a better solution to end the situation.

I would love to hear from others who might have found a good solution.

The Horrible, Terrible, Very Bad Night

Last night I went out to dinner with a group, came home and did not get the dynasplint on until about 8:30. I went to bed close to ten and tried to sleep. As usual I could not get to sleep for quite some time but finally dropped off.

When I woke at about midnight everything felt wrong. I took off the splint but that was not enough. My left arm ached and my right knee hurt. My stomach felt queasy. Was I getting sick?

The worst was that I could not stop crying. I bawled and bawled, big sobbing messes, uncontrollable, inconsolable. I went into the bathroom, took a shower, came out still crying. I splashed cool water on my face, still crying. I lay down in bed and felt my body again shake with sobs.

I finally fell asleep, fitfully, woke a few times, managed to stay reasonably calm. I woke, still feeling (and sounding) funny in my tummy but at least no more crying.

I hurt, yes, but it did not seem that the aching and knee pain were the main reasons for the crying. I don't know what was.

Go Figure

Today I met with the DynaSplint rep for a followup, just before I had a scheduled PT appointment. I wasn't feeling particularly well, had some stomach issues, but they seemed to be evened out enough by the time I had the appointment, fortunately.

We went over how I put the splint on, adjusting the straps, and she read all of my comments and noted the progress I had made. She said I was doing really well, just as she expected I would. She recommended that I stay at level 9 for three or four days, trying to up the hours, then gradually move up, increasing the tension only every few days or so rather than every day as I have been.  I had mistakenly thought that I had to pull the straps to the same place every day, even when one or two were biting into my flesh. It was good to hear that no, I just needed to get it on right and adjust as needed.

After the rep left I went straight into PT as usual. I felt, for some reason, unusually tired. It may be that I had lost some energy with the stomach issue, whatever it was. I suspect I ate something suspicious.  I did not say anything about how I felt, just plunged ahead, pushing my body a little farther than I really wanted to, frankly.

I see an old pattern emerging. When people in authority do not let me know how I am doing I tend to work extra hard and feel resentful at the same time. I have dropped comments from time to time about what I do outside of PT, hoping that I will get a chance to describe exactly what my gym routines are, for example, because I think it would be helpful for them to know, to be able to adjust what I do at the PT office.  Nobody has taken me up on these hints so I just keep plugging along. At this point I feel I am doing as much as I care to do, as much as is reasonable to expect of me, frankly.  Six days a week at the gym, over an hour every day. I think it's enough, especially added to the three days a week at the PT office, which counts as another workout.

So there I was, pushing the leg extension and leg curl machines beyond what I really wanted to do, to a kind of breaking point. I don't think I hurt anything but I wanted to show that I am up for it, that I do not try to get out of work. (Believe me, I am not talking about a hell of a lot of work; just enough to make my legs feel, at the time, that they cannot do more.)

After PT I went to the beach. I went to Avila, found a disabled parking space, walked down the stairs to the ocean, took off my shoes,  and walked in.  I stayed there a while, enjoying the waves pushing against my legs, and then came back in and walked to the grocery there to have a sandwich. Not a strenuous effort but simply an enjoyable one.

Yet when I got home I felt so exhausted. I did not do any more today than I do many many days. So I don't know what was going on with me. I dozed a bit while watching one television show and finally turned off the set at nine and headed for bed.

Yet, in spite of feeling so tired and in spite of taking sleeping pills (Advil pm) and pain pills (Percocet) I am still awake. I lay there minute after minute, hour after hour, making adjustments to the dynasplint, to how my leg was laying, trying to get to sleep, and not succeeding. I never get to sleep before midnight any more, and often even later than that. I am hoping that by coming here to write this up I might have added yet another layer of tired and will be able to nod off quietly and stay that way.

Twelve Weeks

Today marks twelve weeks since the surgery on my left knee. My recent posts indicate that all is not going entirely swimmingly. Mostly I am having difficulty with walking because of my right leg - knee, calf, and even foot at times, as well as hip, depending on the day - and difficulty sleeping because my left knee goes into restless leg stuff, exacerbated by the DynaSplint. My wake-sleep patterns are skewed. I often find myself fully awake in the middle of the night and I just give in to it. My hope is that eventually night times will even out and get somewhat normal (for me) again.

Because progress is gradual I don't always notice improvements. So I'll mention a few things I've noticed recently:

I am no longer heading for the shower in the middle of the night (at least not most of the time) to calm my knee. I am able to do full workouts in the gym and like it. I have even gone down a couple of notches on the bike settings - from height setting 9 to setting 7, meaning I can bend my knee far more than I could in the past. I can walk up and down stairs, one foot at a time, if I am reasonably warmed up and not going through a particularly bad day. I do Aqua classes completely and rarely have pain in them. I am getting more comfortable with standing up straight and keeping my stomach pulled in (no, not all the time, but much of the time). I can get in and out of my car with little discomfort, and I can drive with the clutch. I look better and generally feel better.

Most of all I can see the future. I am working on my right leg as well as my left and expect this work to pay off in an easier recovery time after that surgery (but I don't expect miracles). I think it's possible that after surgery on the right knee I will be hiking again! I can see it out there.

Dyna, Dyna, Won't You Cooperate?

I have been diligently using the DynaSplint. If I have a chance to stay put on the couch for a while I put it on there, during the day, and later put it on when going to bed. I am trying to get up to at least six hours a day. It's been difficult.

Almost every time my leg goes into that "restless leg" feeling after the splint has been on there for a bit, usually under an hour. It happened again tonight, when I had an hour and a half to go to reach my goal of four and a half hours. I tried and tried but could not stand it. I took it off early. This is the first time my record will show me not meeting or exceeding my daily goal.

I think the only way it could happen is if I had very strong pain relief or something that simply knocks me out. One thing I have not yet tried is marijuana. Arthritis is one of the diseases that qualifies one for medical marijuana and I have learned of a dispensary in town. I think it's worth a try.

The Dynamic DynaSplint

Last Friday (a week ago) I got my DynaSplint. The rep came to the physical therapy office to fit it on me and show me how it works. It didn't take long to get a good fit and I picked up how to put it on and adjust it quickly.

The splint is held in place by four velcro tabs, two above the knee and two below. There is a set of two cams, one on each side of the knee, that assist in applying pressure to the leg, from two linear adjustment pipes below the cams. The rep started my splint out at level 3. She said she starts everyone there. It gives a lot of wiggle room. I am supposed to work up to wearing the splint from six to eight hours a day, preferably while I sleep. With my sleep problems I am not seeing this happen particularly easily. After taking off the splint, my knee is expected to feel stiff for a while. If it is stiff for less than an hour it is time to increase the tension. If it is stiff much longer than an hour or if it causes pain it is time to reduce the tension by a half-step. The goal is to get my knee straight! Zero degrees.

I have been wearing the splint for more than one session per day, and have worked up to about 3-1/2 hours total. Today the level is at six.

Unfortunately, the splint seems to encourage that "restless leg" feeling, so I tend to take it off often. However, I have had some longer stretches of time, asleep, no discomfort. As with everything else, I think the key is to get myself into a good solid sleep, which is much harder than it sounds.

Meanwhile, I continue with therapy as usual, no change. The various machines, then step-ups, maybe some rubber-band sideways steps, some "mobes" to help straighten the knee, then finally the infamous stim machine for fifteen minutes, both legs. All of these activities together, added to the work I do at the gym, should be helping with the straightening as well as the strengthening of the thigh muscles.

I have added a few more exercises to the gym routine after meeting again with Clara last week: rolling my thighs on a foam roll, to massage the soft tissue (pain!) and pressing a 12-lb medicine ball between my legs (quite effective).  I find that I enjoy hanging out on the mat after doing the bike and other machines at the gym. I feel like I can take my time there and get it all done.

I just read the title of an article that says you can do your exercises at home, you don't need a gym. I know that I don't need a gym but I find it much easier to get the work done there than I do at home. It is well worth it to me and I get the added benefit of having others around me encouraging me or offering additional examples of what I might achieve over time. If I devoted as much energy to keeping my house clean it would be some kind of miracle.

My right leg continues to cause me problems, although not all the time. I try not to let it discourage me.