Knocking them out this Week

This is another week of knocking out the health related appointments. Tomorrow is PET/CT scan, Thursday is outpatient clinics including P.T., lymphedema and such, and Friday is my annual physical with my gynecologist. I shouldn't complain. When I think of people in tough treatments (radiation, biochemo, chemo, immunotherapy) my irritating stuff is mostly irritating. Just the endless appointments to get to and through. Work is busy at the moment but I did some catch up this weekend. That's one of the advantages to working from home, it's easy for me to work most days for at least part of the day. I had fun yesterday with BF. We went to a recently completed, natural ecosystem at a lake with trails, and a restored mill house that actually works. Don't you love it, a recently completed natural ecosystem. Anyone else getting the irony here. They have to be very agressive not to let non natural habitats take over. I couldn't help but notice the bamboo springing up in the woods. I don't think bamboo is indiginous to the NC peidmont. I'm sure it will have to be pulled up soon. Probably someone living closeby has bamboo in their garden and voila, there it is at the woods by the lake. To have an ecosystem that duplicates what was in an area before all the foreign plants are introduced you pretty much have to have a team of gardeners keeping out unwanted volunteers. I'm sure that provides needed jobs for students and others. BF and I had fun going for a slow stroll through the woods and then we had lunch at the farmer's market on the way home. I guess I better get back to work. It was getting very tedious and since I started work almost straight from sleep this morning, I needed a break. My scan tomorrow will blow at least a half a day with the travel time as well as it taking a long time for both the PET and CT pictures not to mention the quiet time beforehand while the radioactive sugar courses through my veins. I'm being just the tinsiest weensiest bit dramatic about it.

Wind Chimes and Pain Management

During a strong storm my wind chimes are almost orchestral. I have twice as many as are pictured here. I love wind chimes. They hang in a row outside the french door which a friend put in where one of my bedroom windows used to be. It allows me to step out on the deck from my bedroom. I can also easily watch the birds on my deck without getting out of bed. I am aware of how sedating all the meds I take are because even during strong storms with the wind chimes singing like crazy, I no longer wake up. When I do wake up, I have often incorporated the songs of the chimes into my dreams. The odd thing about the sedating meds is they don't keep me from functioning during the day. Maybe all that dark french roast coffee I drink is a factor but I'm up from morning to bedtime but I sleep deeply and long when I do go to sleep which is a blessing. What bothers me about the meds is the ones that help with neuropathic pain but were designed for something else are the sedating ones. If I only took pain killers, I would have few side effects. The pain killers go straight to the pain and I don't notice any side effects. However, the neurontin and elavil (recently added to my regimen) are the ones with the noticeable sedating and brain fog side effects. Both of those drugs were originally developed for psychiatric issues but they discovered they were good for treating pain off label. The docs don't have a problem increasing meds like neurontin to high levels although I have a problem with how they effect my brain power. The docs have to be conservative, except short term, with how they prescribe pain killers in the opiod class. They do prescribe them for me but they want me taking the least amount possible and they prefer to increase the other ones. I've been taking neurontin for over a year and am up to the maximum dose. That's why it was necessary to add elavil to the mix as well as temporarily increase pain killer dose when the pain got worse. I hate taking all of this crap but I most hate the brain fog ones. What bugs me the most is finding out through reading that as long as the other meds (vicodin and percocet) are only taken for pain and aren't mixed with alcohol, they aren't addictive. That was a huge break through in pain management when the doctors discovered that but the problem is they have to weigh whether the patient is a potential abuser and they all have to give their lecture on not abusing opiods. Once my doctors get to know me, they realize I'm not an abuser. The problem is with each new doctor, that's something they have to weigh and it pisses me off. If I didn't need them, I could go back to drinking wine which I enjoy. As it is, I'm too scared to drink alcohol at all except for a glass of wine with birthday, thanksgiving, Christmas and Easter dinner. For the past year and a half those were the only times I had any alcohol. I do everything right. I have educated myself and am very careful. I don't take strong meds when ibuprofen will do. What I hate is the off label meds which aren't regulated in the same way as other pain killers, have to be taken each day in the same amount. They aren't the kind of thing you can only take when you need them because they work by building up in your system. Therefore, I'm left in a perpetual fog which I can't stand. However, I can't work and function without medications so I'm stuck with the way the doctors do it. I understand the reasons why it's like this but it bugs the shit out of me that it's okay to give patients drugs which effect their ability to focus and be as productive as they are capable of being but it's not okay, except in extreme circumstances, to boost the pain killers to the point where they do the job. I didn't know this before I was in this situation but the crazy part is I don't feel the strong pain killers at all. I can take them and be totally myself because, as I said, when they are only taken to treat pain and not mixed with alcohol, you don't get a buzz. They go straight to the pain. That's why I know I'm not taking too many because I don't get any side effects from them but I also know they are the meds the doctors have to be conservative about prescribing. I don't blame the doctors. It is what it is but what it is, is nuts. I wonder if I will get the pecan pictured above, which is dangling over my deck along with many others, or if the squirrels will beat me to the punch. I may actually have enough pecans in my heavily laden pecan tree for me and the squirrels.

Baby Steps

The cooler morning yesterday gave me a much needed boost. I walked slowly in the morning and did some putter gardening in the afternoon. Not much, but I have to take baby steps at this point. I know part of my problem is that I tend to be all or nothing. I've never done well with moderation in terms of activity level. When I started writing songs, I wrote hundreds of them, never really going back and crafting them as well as I could have. When I was recovering from my lymph node dissection, I pushed hard. I wanted to get back to running as soon as possible and I did briefly, until it all fell apart. At some level, that's still my goal. I can't shake that feeling that if I could start running again everything will be alright. It's not like I ever was an athlete or runner in any competetive or even serious way. I was on my junior high school track team but that was it for competetive running because I started smoking. I immediately had breathing problems as a smoker and didn't go out for track team the year after I started. Now I think I must have been allergic to smoking. Chronic bronchitis, sinus infections, and all the ongoing health problems that started as soon as I started smoking, miraculously ended when I stopped smoking in 2001 at age 43 and 5 months. I wasn't quite 14 when I started sneaking cigarettes. I didn't smoke around my parents until years later but I still smoked a lot from the beginning. I didn't start running until 2004 but I loved it . It took me back to junior high school track team and reminded me of how much I missed running. It felt so good to be able to regain a lost source of enjoyment at age 46. I couldn't believe how fast I was able to get up to run/jogging 5 plus miles. Then I got sick and never quite got well. I took a break from running while I was clearly sick but once I started back again, I never had the same energy level. Several people suggested that I was over training which made sense. I ended up working with a trainer at the Y who helped me with upper body strength and circuit training. She thought I ran to much. Ironic that I didn't work with a trainer until I was already in pretty good shape, had lost most of my excess weight and was physically active. I had in the back of my mind that I wanted to do an outward bound rock climbing excursion tailored to older adults so building upper body strength was important. Try as I might though, I never regained the energy level I had before I got sick. I was limiting running to 4 or 5 days a week VS 6 or 7 which I did for a while. When I worked with weights I sometimes limited running to 3 or 4 days and would take a day off to do nothing physical and have 2 days where I swam and 1 or 2 when I worked out with weights or rode my bike. I still couldn't regain my full strength so I tried taking more days off from exercise. Gradually I started to associate that stupid dome (it was beyond a mole by then) on my hip with not feeling well. It caught on my under pants. I would wake up bothered by it. When my sisters and I began discussing beach dates for what has become our annual reunion of sorts, it tipped the balance and I found a dermatologist to remove my 21 year old nodular melanoma. One of my sisters, in particular, commented every summer on the changing lesion on my hip. She was the one who noticed it at the beach when I told the family I was pregnant in 1984 and I went to a DERM who said my blue, black mole that bled around the edges was nothing because it was symmetrical. However, in recent years my sister said that it didn't matter if a dermatologist had said it was nothing. The point was it changed every year between the times she saw me in a swim suit and I needed to have it checked out. By that time it was very light, almost the color of my tan skin and was a very large dome. Finally, in order to avoid her concern as well as because it was starting to be associated in my mind with all that ailed me, I went to a doctor. The rest, as they say, is history, or at least my fraction of a grain of sand part of it.

Teaser of Fall to come

It was 56 degrees when I woke up this morning. WOOHOO! I am so tired of the summer heat. I know it's just a teaser and fall is not going to hit NC in earnest for well over a month but even a morning or two below 60 is like manna from heaven for me. I can't wait for the leaves to start changing colors. The photo in this entry is of one of my front garden oak trees. I am one of the few people in my neighborhood that still have big oaks in front of their houses. When Hurricane Fran hit in the mid 1990s, some houses were totalled, literally. Many people had major damage from huge trees falling on their house. I lost a beautiful maple tree which damaged my honda but that was it. The house I grew up in, and where my Dad was still living at the time, had four oaks land on it. Fortunately my Dad was okay and his house was restored. Once the dust settled from Fran, many people went ahead and cut down the remaining large trees near their houses. It was a wake up call that even central NC wasn't immune to a hurricane ripping from the coast and making its way hundreds of miles inland. I will never cut down my trees unless they are dying. I did have to remove one of my 3 large oaks because it was diseased and basically dead. The two that remain in front of my house provide much needed shade in the summar and a splash of color in the fall. Ernesto caused a lot of flooding on the NC coast and some where I live. My front garden is full of limbs but no biggie. I may need help with the larger limbs that are currently draped across my hostas, ferns, and periwinkle. They aren't quite logs but a few are pretty long and heavy. I guess I'll go for a walk or at least give it a try. I haven't been walking in weeks since the additional pain started but I feel marginally better this morning so it's worth a shot.

flowers, pain clinic, and such

I ued to take pictures of the flowers, growing in my garden, after I picked them, and after I dried them. My fireplace arrangements with dried flowers were Martha Stewart run amuck. Many aspects of my home are Martha Stewart run amuck. Picture a messy Martha throwing buckets of dried flowers in her fireplace with dusty craft projects hither, thither and you have an idea of what it is like at my house during the best of times. I managed to get through the pain clinic evalutation without becoming visibly upset. I wasn't that upset even invisibly. I'm lowering my expectations. The bottom line is when the doctor saw who my current pain specialist was he thought I was there for a second opinion. He said my current doctor is very good. Well, I wasn't there for a second opinion. I think Dr. Pain is very good for some people but I think I could find a better situation for me. What's a person in pain gonna do, take what she can get. It's not that bad. The doctor doing the evaluation did have some good suggestions that haven't been tried and he's sending my PCP a report and I'll get her to send my current pain doc a report and go from there. The other suggestion the evaluator had was that I go to a rheumatologist on the off chance that I have lupus. Oh boy, another doc. Just what I need. Sometimes I think if I'd go to these appointments and tell these doctors what they want to hear I'd get further. The doc I saw today said he had originally had some ideas based on the scans for doing an epidural block in the lumbar, since I do have a significant bulge that could cause pain. However, with my diffuse pain, he doubts it would help. I don't have diffuse pain. I have 3 issues all the time, and a fourth one some of the time. But the minute they see issues in different places that aren't connected they think diffuse. Can't they understand that I could have more than one cause of pain. At least this doctor agreed with me that I don't have fibromyalgia. However, the bottom line is he felt like I already had a good pain doc and no point in changing. Gee thanks. Do I get a vote. I'm not going to let it get to me. Perhaps, Dr. Pain will be ammenable to changes based on the recommendations from the pain clinic. The problem is that he didn't know I was going to a pain clinic. I did that through my PCP in hopes of finding a better pain management situation for me but it felt like I'd run inot the young boys (docs) club. I know it's not the silly way I'm making it sound. I'm sure all of these physicians mean well and do their best. I can't help but feel like I need someone going a little outside the box but not much I can do about it. So, onward and forward as the chliche goes.