Tuesday, June 19, 2018

11 Months: Persistent Progress

Hard to believe that my right hip is now 11 months post-op, so close to a year! And, left is nearing two years post-op. Crazy how fast time flies, yet how slowly it creeps along at the same time. Last year, as left hip neared one year post-op, I was thinking it was nearing its recovery period, as I had been told full recovery takes at least a year. Well, once I was diagnosed with Ehlers-Danlos syndrome, my surgeon modified my recovery time frame, telling me to expect each hip to take 1.5 to 2 years for full recovery. Thus, I have just thought of myself as rehabbing my first hip still along with the second one. There really is not a lot of significant progress to report compared to last month, and one thing my surgeon had counseled me at some point on this journey, was early on to look at progress across a month, later to view progress across 3-4 months, but also not to compare between hips--recoveries could be similar, or different. That has been helpful advice to keep in mind. There may not be a lot of progress in the past month, but I know I am still getting stronger! I am nearing my limits of endurance/what my body can handle, before reaching limits of what my hips can handle, so I cannot really test limits much with respect to hips. So grateful both of my hips are doing so well!

Shoulder update, since it is what is holding things back. I had a guided injection into the left shoulder joint a few weeks ago. Wonderful, blissful, pain-free reprieve for a few hours....then miserable, far worse than prior to injection. This is more or less normal response to injection, but magnified this time as contrast was used and my body seems to find contrast irritating, especially injected directly into a joint. The shoulder surgeon and I had discussed this at my appointment, and when I expressed my concern regarding contrast, he ordered an ultrasound guided injection to avoid contrast. So grateful! So, what happened, then? Well, shoulder surgeon is long distance, so he ordered the injection to be done locally for me. The rest is a long story, but ultimately I decided I wanted the person sticking a needle into my shoulder to be comfortable with how we were proceeding, so agreed to contrast. I was really hoping it would be OK. Bur, oh my, it was so miserable for over a week--the longest it has ever taken cortisone to take effect. I was not sleeping, not using the arm, etc. But, I survived! Cortisone is in effect now. However, with the shoulder so sore for so long. plus the plan being shutting shoulder down for a break the first week after injection, then gradually add back shoulder PT, but no swimming for a month, my body was in a global flare by the time the injection started to really work. I am still working through this flare. My body pretty much needs to swim, but not allowed to do so with arms, yet.  However, surgeon and PT OK'd me to "swim" with a kick board, and this is what I am doing--part of why hips and legs are getting stronger! They have to work harder in different ways than if using arms with swimming, or only walking, PT rehab. Right shoulder and arm are getting stronger from doing everything. Left shoulder and arm are really pretty pathetic. That shoulder lacks the strength to support itself, thus if not taped, my neck tries to support my shoulder, which flares neck, which flares back, which flares left hip, which refers pain down left leg, eventually flares right hip and right shoulder. Hence global flare. My left shoulder does not even like holding the kick board to swim, so I hug the board to me with my right arm crossing entire width of board and gripping left side of board with right hand, then let left arm just sort of drag along. It works. I "type" one-handed when not taped. I live in tape as much as I can....have tan lines from where tape usually is. I am discovering ways to calm/prevent as severe of skin reactions to tape! But, my skin still needs breaks to recover even from milder reactions, plus just to let it breathe. Without tape, I do not use my shoulder/arm much--they will not work right, hurt if I try. (Hurt even if I do not try). The break days typically fall over weekends, thus weekends are really uncomfortable, often miserable. I plan my rest day to be when tape is off, since I will not be able to use the arm well anyway, all activity uncomfortable.

I had not gotten my hair cut since right before the right hip surgery last summer. It had grown out to shoulder length or so curls. Long enough to have to find ponytail elastics and put it in a ponytail out of the way. It had not been that long in years. With shoulder so awfully miserable after injection, I went and got my hair chopped off into short pixie cut again. So much easier and so much cooler in this summer heat! I had not intended to let it go this long, but about the time hips were ready to sit long enough for a hair cut, I was in a car accident, and not able to sit anymore. Once I did regain ability, I was sort of curious to see how long it would look OK just growing out from a prior pixie cut. (I had figured that would not grow out gracefully....but it did! Of course, having some natural curl helps hide oddities.) Anyway, it was getting to be too much hassle, so finally chopped it off. I had to take in a photo from right after surgery to show what it "normally" looks like when we cut it. Since I was still in brace and on crutches and they were visible in photo, that led to questions....and memories. I have come so far in the last 11 months!

A year ago, I was nearing one year post-op left hip. I was scheduled for right hip surgery. I was no longer able to walk much so was swimming nearly daily, both shoulders were the strongest they had been in years. Over the past year there has been a lot of change in ability, with gradual return to my normal routine of swimming and walking alternating days, with at least one rest day a week. Then, after this shoulder injection I could not swim, so was walking daily--accrued 22-some miles of intentional walking (either for exercise, or concentrated walking to get somewhere--PT, library, store, etc.) the first week of June. Now, able to "swim" without using arms, just kicking, holding onto a kick board. Thus, able to shift back to my normal routine of walk three days a week, "swim" three days a week, alternating days to give my body variety, plus chance to rest between types of activity. This along with gradually advancing shoulder PT is helping to slowly calm this flare. But, it has been a discouraging process. It often seems like I barely recover from one issue, surgery, or situation, before the next one is either scheduled, or just happens--many times overlapping. I need to choose to keep in mind that this is temporary. One day, all will be well!

"For which cause we faint not; but though our outward man perish, yet the inward man is renewed day by day. For our light affliction, which is but for a moment, worketh for us a far more exceeding and eternal weight of glory; While we look not at the things which are seen, but at the things which are not seen: for the things which are seen are temporal; but the things which are not seen are eternal." 2 Corinthians 4:16-18 King James Version (KJV)
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