Finally something positive . . .

I am so happy to finally have a positive health related experience. The physical therapist at the outpatient hospital clinic was great. For that matter the P.T. I was going to before for deep massage, breaking down scar tissue followed by heat, and estims at the end of the session was great too but she was out of network. This is a hospital, in network clinic which is prescribed by my doctor and which will be paid for by my insurance, whoohooo. This is my second P.T. and it's 2 for 2. Why do the P.T.'s seem to get it so quickly when they pain docs don't. I just don't understand. Maybe it's the hands on issue. For whatever reason, I feel like the physical therapists have the best grasp of what's going on and understand the complexities and that it's not a one size fits all issue but rather a group of issues, some of which are acute and some less so. The only thing that worried me was she felt the lump on my back and thought at this point that it was getting into a muscle. That wasn't showing up on the MRI or discussed by the doctors which makes me wonder if it's growing. Hopefully not. The way it came up is we were trying to decide if I'd be up to P.T. a few days after the lump excision and she thought my doctor might have to go into a muscle. Please no! If he does have to get into a muscle that will be a factor in terms of how sore I'll be, obviously. One of the interesting things that came up was, when she took the measurement on my feet and legs for the lymphedema assessment, it turned out my right upper thigh is actually bigger than the left (surgery side). The deal is, my left foot calf and near knee are somewhat bigger, as expected, than the right. However, I mentioned that I could tell I keep more fluid in the thigh. Turns out that although it's obvious I have fluid in the left thigh, it's smaller than the right one. The reason is that my right quadracep has been built up to take weight off my left and my left quadracep is getting puny. That explains a lot. I know when I started running again after initially recovering from surgery, other runners in my neighborhood mentioned that they could tell I was leaning to one side. That conversation happened after all my problems began and theories floated around about how I was thrown out of allignment which was possibly part of where the neck and spine pain was coming from. Apparently, even from walking, which is all I can do now, I have built up the right muscle to compensate for the lingering issues with scar tissue and such on the left. Not sure what the resolution will be. Good though to have someone working with me on it in a methodical way. The plan is for me to go 3 times a week for 4 weeks. My only reservation was that was the plan with my first P.T. and we did that and then twice a week and then once a week but it never got me fixed. This is different since the specific issues she and another P.T. will be working with me on are lymphedema, balance and my back. It feels good, whatever happens, to be with someone who understands what I'm dealing with. I recall how good that felt with the other P.T. but hopefully approaching it from a different angle (balance, strength, moving the lymphatics, allignment) will have a longer lasting benefit than focusing on the deep massage did. The problem with my first P.T. experience is at first she helped me enough for me to hurt myself. That time she worked on the myofacial knots and it made a difference but I started jogging and before I knew it, I was all out of whack. This time the goal is functional strength and walking regularly. I am slightly better than guardedly optimisitic at the moment. I am close to truly optimistic. I like that feeling.

More from before the crash

I think I'll reprieve a few more of my, before the blog crashed, photos. This hollyhock was a much loved plant because it was amongst a very few that survived a big summer hail storm. It was quite a few years ago that I had a veritable field of hollyhocks and huge sunflowers when a strong storm whipped through complete with enormous hail (or is it hale). My garden bounced back but the hollyhocks and sunflowers were for the most part demolished along the lines of the bigger they are the harder they fall. This hollyhock didn't break under the weight of the hail and I enjoyed it. I still enjoy plants from the seeds it put down which have sprung up in new places in my garden. I was looking over my paperwork for the clinics I'm going to this afternoon which will hopefully help me get back to whatever level of physical activity is possible. It isn't that easy to read my handwriting even when I printed as neatly as I can. Still I think it probably does have the information they need. One thing that will be better about the outpatient clinics for rehabilitation is that I've been written a script for several different ones. They probably won't be able to do the all the evaluations in one appointment but this will be an initial evaluation to come up with a plan. The three separate clinics are lymphedema, balance, and back. To an extent that covers it although I'm not sure those are the divisions I would use. What I find frustrating with the pain doctors, yes I am a broken record, is how they see I have so many different problems and they jump to a diffuse pain diagnosis and look for conditions like fibromyalgia which I don't fit. At least we're past that one but the lastest is for me to see a rheumatologist which I'll do eventually. What I try to get across is that I have problems directly relating to the groin LND which are by and large manageable. The increasing lymph back up is annoying and the periodic nerve pain on the left leg can be quite uncomfortable but those issues alone wouldn't send me to a doctor. The shooting pain straight down my spine and the burning pain in my right neck, shoulder and arm are not manageable without strong medications. The low back pain that goes into my legs which is probably from the disc bulge they found in the lumbar can be quite bad but that alone wouldn't have sent me to a doctor. The pelvic pains are the ones I most fear relate to a recurrence but they aren't anything like as bad as the spine or right neck issues. The lack of coordination and balance, particularly when I'm tired is upsetting. The overall sunburn feeling, tingling in my feet and sometimes hands, and weird sensations are managed with neurontin. Without neurontin I wouldn't be able to shower. So there you have it. How any doctor could be confronted with that and come up with diffuse pain or generalized pain is beyond me. The doctor who probably gets it the most is my neurologist and he'll keep looking for causes within the specialty of neurology. He's tenacious but he isn't going to look for causes outside his field. Fair enough. The problem is he's the only doctor who has spent enought time with me to get it. The P.T. I saw for a while got it. However, she wasn't in a position to do much about it beyond deep massage, estims and heat. When it got to where I couldn't tolerate the estims and heat we decided to hold off awhile. Besides, since she was out of network for me, the cost became prohibitive. Hopefully my insurance will cover the outpatient rehab now that I have a script for specific types of P.T. from my PCP.

Messy it is . . .

Made it through my PET/CT scan today without any mishaps although I was surprised that I literally couldn't sit up on my own at the end. With other scans I've been bothered by how unsteady I was. I even built up a guess that they saw something after one PET scan based on the technician helping me up and being solicitous. This time, no one rushed to help me but I had to wait on them to sit up because I couldn't do it on my own after lying there that long in one position. Oh well, it's a fairly small thing but it registered on my personal radar. I have been filling out a bunch of forms which the outpatient rehab clinic I'm going to tomorrow sent me. It is very messy. I have terrible handwriting and there isn't enough room to do a good job of providing the information they need but I'm sticking with the format they have and am going to give them the benefit of my messy handwriting. I'm sick and tired of going to the bother of printing out neat forms with attachments containing the facts in an easy to read format only to have the people I give them to seem taken aback, as if I'm somehow obsessive. That's not fair because most of my doctors have seemed fine with that technique but it hasn't worked well with the pain docs. So the rehab clinic will get incomplete information and it will be in my impossible to read handwriting. Maybe that will go over better and make me seem less obsessive. I never have figured out why providing complete information seems obsessive and to be fair only one doctor (my pain doc) ever said it was. The other doctors have seemed appreciative and have been nice about it. The pain clinic last week though burned me again about trying to be helpful when the doctor made a comment about my copious materials or something like that. What made me decide to stop trying though was when he said that he had originally thought he might do an epidural since the disc bulge could be painful but that after seeing that I had diffuse pain he didn't think it would help. I DO NOT HAVE DIFFUSE PAIN. I HAVE THREE problems all the time and a FOURTH some of the time. The whole point in supplying all that information was to be sure he got it. He didn't get it. All he got was that I gave him a whole lot of information that he didn't have time to read or that's my take on it. I give up. I'm not going to be able to keep trying to help the people that are trying to help me. Either they can figure it out or they can't but it's too frustrating for me to keep trying to make it easier to figure out.

All dressed and not time to go

I should have known I would be up early on scan day even though I've been sleeping later than usual lately. I had a choice of times for my scan and I chose 9:30 am since that means I don't have to leave here at 8:00 am. I have to allow extra time for rush hour traffic but leaving at 8:00 will give me plenty of time. Since I can't drink coffee and I woke up at 6:00 am, nothing much to do. I don't trust myself to be coherent without coffee. So I'll be incoherent on my blog. I can't use the extra time I'm up to get some work done because I'm afraid that working without coffee would be risky. Amazing how addicted to caffeine I am. I'm not as nervous as I was yesterday. I wonder if there could be a correlation between no coffee and not so nervous about the scan. There could be but I can't function without coffee. It's not debatable. With all the medications I take, I have to have coffee.

Nervy and I'm not Sure Why

Not sure why I'm so nervy. Decided to call it a day as far as work goes. I had intended to get a little more done before I saved to my work network but I was far enough along to decide that enough was enough until after my scan tomorrow. What I can't figure out is why the PET/CT scan tomorrow would loom as this dreaded obstacle to get past. It will be my fifth one of it's kind that I've had starting with the initial pre-surgery one I had in February of 2005. I should be an old hat at it by now. I think I meant to say old hand not old hat. I certainly feel a bit like an old hat, a slightly funky one. Perhaps a slightly aging beret with a colorful feather to the side. Yep, I'm getting silly. I used to collect hats. I still have most of my hat collection. I have some hats going back to the 1920s that were my Godmother's Aunts. An older friend who saw me perform my original songs wearing one of my funky hats, gave me one she'd saved from when she was a young woman in the 1940s. Then I have hats that were my moms and hats I bought because I thought they were neat. Along the winter hat line, I have a bunch of those stocking style ones in wild colors that a friend brought me when he was visiting a friend who worked at a hat store. My daughter asked me to please take one of the wilder of those hats off, when I picked her up from school in the winter because they were embarrassing to her. I think that's when she was in elementary school. I have a couple of hats that look like what you see Russian soldiers wearing in the 1920s or something like that except mine are decorative. Maybe I should start wearing hats again to give me a boost. Not sure if I have the pinnache at this point though to carry it off. When I was first dx'd with melanoma, I used it as an excuse to buy some fun summer hats but I rarely wear them. At this point I avoid being outside in the heat of the day and usually don't bother with hats. I love yarrow. The white and red yarrow are old photographs I took. At this point I have more yellow yarrow and only a little of the red and white. I'll have to look and see if I have any photos of my yellow yarrow. Not a great picture but I found one. Yellow yarrow it is. On that note . . . to be continued when I'm not bouncing off the walls. I still can't figure out why I'm bouncing off the walls. This scan tomorrow shouldn't have me so unnerved.