I saw my primary care physician on Friday and blood work was ordered - platelet count, ANA level and thyroid levels. The platelet count is one that is done immediately, and unfortunately by yesterday afternoon I found a message on our answering machine saying my count was 19,000. As we were out most of yesterday, the doctor on call called again at 10:30pm, stating her concern, blah blah blah, I've heard it all before.
To say I'm disappointed is an understatement. More like crushed. I need to see the other results before I have a clear picture of things. It will probably be several more days before I know the rest of the picture.
It's frustrating. I have no symptoms that go with a low platelet count. I have a paper cut, I don't bleed more than any normal person. I'm not having nose or gum bleeds, or other symptoms that usually go along with a low platelet count. I know it was 110,000 February 2008, which was below the norm but not alarming; what happened since then? Physical therapy has made the pain worse, not better. I was doing so much better in late February/early March, but I just can't seem to get back to that place. I wonder what my platelet count would have been then if I had a chance to see the doctor at that time.
So I'm now back in horrible pain, low platelet count and my spirits are pretty down. Basically right where I was six months ago.
It's a Sunday. Nothing I can do. Today the plan is to do some work from home, and to maybe work on priming our downstairs woodwork in the kitchen, dining room and bathroom area as we're getting Villa Stone tile put in in a few weeks. We already painted the woodwork in our living room white shortly after we moved in, and it looks amazing. It's been a goal of mine to paint the rest of it, and now I have motivation to at least finish the first floor before the new flooring is in. That way I don't have to worry if a little white paint gets on our current cheap vinyl flooring. I was waiting until I felt better, but now I'm not convinced that will ever happen. Life goes on.
Maybe the other tests will show some improvement, but maybe they won't. Until I know those results I have no options but to wait. I know this is a "downer" in regards to a post, but I'm pretty down right now and to write with positivity and happiness would be a complete lie. As I've mentioned before, this is not just an update for those I know, but a record for myself to refer to for future doctors visits and who knows what else in the future. Don't worry about me, I'm unfortunately used to all of this. And after my last physical therapy appointment next week I should be back to minimal back pain, so at least the surgery fixed something.
Sunday, April 26, 2009
Tuesday, April 21, 2009
Week 17/18
I'm combining two weeks progress here. April 15 marked my four month anniversary of my surgery; April 14 marked the two-month mark of getting the IVC filter removed. How am I doing? Right now - horrible. Today has been my best day in a few weeks, but that is not saying much.
The pain is different from before the surgery, but I can now officially say that physical therapy has made things drastically worse, not better. That was confirmed last Thursday when I went in for my appointment and found I had no reflex in in my right foot, and couldn't stand on my right leg, toes, or heal. After an assessment by the owner and the individual I was working with that day, they came to the conclusion that everything they have had me doing has been wrong. It appears that the stretches and exercises have put pressure on my nerve canal, so I'm now experiencing horrible, crippling nerve pain. That was actually somewhat good news...they could tell by certain movements that the pain was nerve-related and not something else. The bad news is that I've hardly been able to walk or move now for the last few weeks, and the pain has made life pretty miserable.
My surgeon wants me to stick with physical therapy, as I only have three more visits left. The thought is that if they keep working with me to get things back to normal that hopefully I'll get some relief soon. I will say that this morning I could actually walk semi-normally instead of my normal shuffle/struggle to move one foot a centimeter at a time. For the time being I'm not doing any stretches or exercise machine work; everything revolves around movements to take pressure off the nerve canal and electro-acupuncture. I was basically told that in my current position, even standing or walking would just aggravate things, which it does.
I do have an appointment with my primary care doc this Friday, so I'm sure she'll do some blood work and who knows what else. I will stress that my pain does feel different than before...I'm just back to being as miserable, at least these past few weeks. If I'm behind on correspondence, it's because I'm once again pretty much sticking to work and then trying to rest and calm down the pain when I'm home. I find it very hard to write when I feel so miserable; all I want to do is to try and shut my brain down and preferably sleep so I don't have to be awake for the torture. Though it takes me a long time to get to sleep, once I do I'm at least able to sleep through the night. Thank goodness for little positive things.
I'll write more next week, as I'm sure I'll have some blood test results and such to share. I'm a bit nervous, since it will be interesting to see where my numbers are - especially my ANA and platelet count.
The pain is different from before the surgery, but I can now officially say that physical therapy has made things drastically worse, not better. That was confirmed last Thursday when I went in for my appointment and found I had no reflex in in my right foot, and couldn't stand on my right leg, toes, or heal. After an assessment by the owner and the individual I was working with that day, they came to the conclusion that everything they have had me doing has been wrong. It appears that the stretches and exercises have put pressure on my nerve canal, so I'm now experiencing horrible, crippling nerve pain. That was actually somewhat good news...they could tell by certain movements that the pain was nerve-related and not something else. The bad news is that I've hardly been able to walk or move now for the last few weeks, and the pain has made life pretty miserable.
My surgeon wants me to stick with physical therapy, as I only have three more visits left. The thought is that if they keep working with me to get things back to normal that hopefully I'll get some relief soon. I will say that this morning I could actually walk semi-normally instead of my normal shuffle/struggle to move one foot a centimeter at a time. For the time being I'm not doing any stretches or exercise machine work; everything revolves around movements to take pressure off the nerve canal and electro-acupuncture. I was basically told that in my current position, even standing or walking would just aggravate things, which it does.
I do have an appointment with my primary care doc this Friday, so I'm sure she'll do some blood work and who knows what else. I will stress that my pain does feel different than before...I'm just back to being as miserable, at least these past few weeks. If I'm behind on correspondence, it's because I'm once again pretty much sticking to work and then trying to rest and calm down the pain when I'm home. I find it very hard to write when I feel so miserable; all I want to do is to try and shut my brain down and preferably sleep so I don't have to be awake for the torture. Though it takes me a long time to get to sleep, once I do I'm at least able to sleep through the night. Thank goodness for little positive things.
I'll write more next week, as I'm sure I'll have some blood test results and such to share. I'm a bit nervous, since it will be interesting to see where my numbers are - especially my ANA and platelet count.
Friday, April 10, 2009
Week 16
I know some of you still read this thing, so thank you. Hopefully I don't bore people too much. Part of my purpose in this blog is to have a record of what I've gone through; a journal that could potentially be used to help others, or to help myself if the surgery does not provide the outcome I had hoped. My memory is still not what it once was, and having a written record definitely helps. I actually have two other blogs that I have used in the past, and have gone back to them on many occasions to help piece together my story when I see new physicians or talk to others that have similar issues.
I'm at week 16 since my surgery, and it's hard to believe four months have gone by. A lot has happened, yet the time frame seems shorter. Our lives have been in such chaos for so many months that I think the whole last year just seems like a blur. Somewhat unproductive, a little depressing and frustrating, but mostly exhausting. Right now we're in a place of calmness, and it's just very odd. Unfortunately I don't think it will stay that way very long, but hopefully it will be replaced with more positive events than negative.
If I'm being truthful, my health has actually declined these last several weeks. Before going to Iowa I was noticing some real improvements with pain levels, but I've now been going backwards for about a month. At first I thought maybe it was all of the traveling, sitting, uncomfortable hotel beds, etc. But we've now been home for over two weeks and I'm still not back to where I was.
I'm not going to worry yet. I've been really focused on catching up at work and putting in very long hours, and now that I feel I'm at a reasonable point there I can start focusing on my personal life. I need to stop and really study what I'm doing now vs. what I was doing a month ago. What I'm eating, drinking; what vitamins I'm taking, what activities I'm doing, etc. I also have to factor in weather. Weather kills me, especially when there are drastic swings, which is mostly what these last few weeks have been. Hopefully most of my problems lie there, but I don't think that is the whole issue. I just need time to stop and analyze, and luckily I now have that time.
I am on week three of physical therapy, and I think it's going well. They have a huge variety of weight/motion machines, that work various parts of my body. I'm doing better than expected (per their comments). I go twice a week, and starting this week one of therapists began microalignment therapy. With only light touches and some light pulling of my legs, she was able to improve my pain levels. It was really odd, as I could feel things shifting in my body, which she said were basically toxins, scar tissue, things out of alignment, etc. She worked my legs, back and mid-body, and said that things are pretty messed up throughout my whole body. Not a shock considering everything I've been through; I've always said that after the surgery I would need almost a complete body re-build. Nothing can be fixed in a day, but can be improved with several sessions. I guess once something is "fixed" it doesn't revert back, at least not in the short term. She told me I would probably not feel well for the next day or two, and she was right...but now it's been three days and I actually feel pretty good. I will now be meeting with her once a week for this treatment, and I look forward to seeing what else she can do. I put it in the same category as acupuncture; it's not something I would normally believe in, but having experienced it I can say that it definitely works.
I will be meeting with my Baltimore surgeon in May, which will hopefully be my last visit for at least a few months. Instead of driving I think I'll do a fly in/fly out thing instead. I also need to reschedule an appointment with my primary care physician and have blood work completed; I need to see where key levels are at. I was to go in March but had to cancel twice. Now I'm sort of avoiding, as I want to see her when I'm feeling decent. And maybe I'm a bit afraid; if the levels of my ANA and platelets are the same, then I still have something wrong with me. I have to stop procrastinating.
Happy Easter to all, and hopefully next week my update will reflect more improvement.
I'm at week 16 since my surgery, and it's hard to believe four months have gone by. A lot has happened, yet the time frame seems shorter. Our lives have been in such chaos for so many months that I think the whole last year just seems like a blur. Somewhat unproductive, a little depressing and frustrating, but mostly exhausting. Right now we're in a place of calmness, and it's just very odd. Unfortunately I don't think it will stay that way very long, but hopefully it will be replaced with more positive events than negative.
If I'm being truthful, my health has actually declined these last several weeks. Before going to Iowa I was noticing some real improvements with pain levels, but I've now been going backwards for about a month. At first I thought maybe it was all of the traveling, sitting, uncomfortable hotel beds, etc. But we've now been home for over two weeks and I'm still not back to where I was.
I'm not going to worry yet. I've been really focused on catching up at work and putting in very long hours, and now that I feel I'm at a reasonable point there I can start focusing on my personal life. I need to stop and really study what I'm doing now vs. what I was doing a month ago. What I'm eating, drinking; what vitamins I'm taking, what activities I'm doing, etc. I also have to factor in weather. Weather kills me, especially when there are drastic swings, which is mostly what these last few weeks have been. Hopefully most of my problems lie there, but I don't think that is the whole issue. I just need time to stop and analyze, and luckily I now have that time.
I am on week three of physical therapy, and I think it's going well. They have a huge variety of weight/motion machines, that work various parts of my body. I'm doing better than expected (per their comments). I go twice a week, and starting this week one of therapists began microalignment therapy. With only light touches and some light pulling of my legs, she was able to improve my pain levels. It was really odd, as I could feel things shifting in my body, which she said were basically toxins, scar tissue, things out of alignment, etc. She worked my legs, back and mid-body, and said that things are pretty messed up throughout my whole body. Not a shock considering everything I've been through; I've always said that after the surgery I would need almost a complete body re-build. Nothing can be fixed in a day, but can be improved with several sessions. I guess once something is "fixed" it doesn't revert back, at least not in the short term. She told me I would probably not feel well for the next day or two, and she was right...but now it's been three days and I actually feel pretty good. I will now be meeting with her once a week for this treatment, and I look forward to seeing what else she can do. I put it in the same category as acupuncture; it's not something I would normally believe in, but having experienced it I can say that it definitely works.
I will be meeting with my Baltimore surgeon in May, which will hopefully be my last visit for at least a few months. Instead of driving I think I'll do a fly in/fly out thing instead. I also need to reschedule an appointment with my primary care physician and have blood work completed; I need to see where key levels are at. I was to go in March but had to cancel twice. Now I'm sort of avoiding, as I want to see her when I'm feeling decent. And maybe I'm a bit afraid; if the levels of my ANA and platelets are the same, then I still have something wrong with me. I have to stop procrastinating.
Happy Easter to all, and hopefully next week my update will reflect more improvement.
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