and deposited a load at my door. Or did it?

   I went to a rehabilitation doctor yesterday. He's been working with a friend of mine who has had issues with chronic fatigue. He diagnosed her with Lyme disease and she is undergoing treatment. And she is blossoming. And that's something I want:to blossom.

   Be careful what you wish for.

I have been suspicious for a while about my diagnosis of Fibromyalgia. It's been with me since about 1988.  Or at least, that's when the symptoms became intolerable enough that I spoke to my primary care provider and he diagnosed me with Fibromyalgia. Because nothing else fit. And all the blood work was negative. I even had a consult with rheumatologist who concurred that indeed, I had fibromyalgia.  So I dealt with it the way I deal with a lot of things. I took the pills my doctor gave me and put the diagnosis in the back of my brain where I wouldn't have to think about it too much. This was a more or less effective plan. I went about my business and attributed my increasing fatigue and myalgias to Fibro.  I also had some knee and back surgeries. And a non-functioning gall bladder. And a positive skin test for TB exposure eighteen months after being exposed to a patient who was supposedly not infectious after his multi-drug resistance TB reactivated. It was a scary big, indurated red area.  I almost didn't show it to my doctor or my nurse manager because it scared the hell out of me.  But I did. Long story short, I was treated with Rifampin, which knocked the pins right out from under me. And I feel that my health has gone down hill from there for the last six years. 

  Now I find myself being grateful to that long dead patient and his infectious TB. Without him I wouldn't have had the Rifampin and without the Rifampin and the way my body reacted, I would not have delighted the Re-hab doctor.  He was delighted because my symptoms were consistent with Jarisch-Herxheimer reaction http://www.earthtym.net/ref-herxheimer.htm.  And I'd had a similiar experience with doxycycline in the mid-eighties. This information so thrilled Rehab Doc, that he declared I had demonstrated that I had Lyme disease. And have had it for many years. Decades, even. While I am still processing how I feel about this diagnosis, I am relieved that there is something treatable that will reverse the chronic pain I live with. I've been living in a fibromyalgia flare since shortly after I returned to work, though the fatigue I experienced while healing from my back surgery was front and center.  I attributed it to the previous year's pain and the rigors of surgery.  That's why I went to see this doctor. To see if there was something that could be done. Not only did he diagnose me with Lyme disease, he diagnosed me with a systemic yeast infection. He feels he can help me. He tells me that treatment will take years. I am not as overwhelmed as I was yesterday. I'm processing yesterday's events and am grateful for the support of my friends and family. I haven't told my sons and their partners yet. I want to wait until the blood work has been processed and a more definitive plan formulated.

   Originally, I was not going to post here so I could be more private about this. But I need to vent. So. I've vented.  I have the support of two friends who have been or are being treated for Lyme. Had it not been for their experiences with finding a provider willing to help them through protocols that are not universally accepted, I would not have known who to turn to.  That they have shared their experiences with me makes me feel hopeful.  I'm scared, but willing to take a chance. I see Rehab Doc again in mid-March. In the meantime, I will continue to research and make gentle changes in my life. 

And while I can't go so far as to say I'm grateful for this infection, I am grateful to find the people and tools to help me. 

ADDENDUM:

Blood work is still pending, so the diagnosis of Lyme or Lyme-like infection is not official yet. 

Blessings abound.

Went to Dartmouth Tuesday for my six month post-op check-up.  Dr. Sengupta was very happy with my ability to walk. He doesn't need to see me again until the two year mark, I am doing that well.  He is very pleased that I walk as well as I do. He says the weakness in my left leg will never go away, but encouraged me to keep doing my pool work to develop the other muscles so they can compensate for the weakness.  I am probably always going to have to walk with a cane. I find the prospect disheartening even as I am grateful that I can still walk in some way. 

The three hours spent in the car were very uncomfortable. We skipped staying in a motel in Hanover because I really didn't feel we could spare the money. And what we saved in money, I paid for with sciatica and aching. I'm not sure we did the right thing. However, done is done. 

Work has been slamming busy. I am still only working three days a week. The days bleed into evening. I'm trying to do five days' work in three. The Prior Authorizations are in avalanche mode as people's new insurance formularies no longer cover what these folks have been on in the past. There's a brief period of time where the Medicare D plans are obligated to supply the patient with the medication. They send a letter to us and the patient, supposedly enough time to be able to replace the medication with a formulary alternative or try to appeal the decision of the insurance company. There is not enough time in the day to give these the attention they deserve. And I'm not getting much help from my co-workers. They're busy, too, for the most part. Although if I hear many more conversations about boyfriends and spouses and broken down vehicles while I'm under a mountain of work, i might have to employ ear plugs. 

I haven't made it to the pool this week.  I feel it in my body.  I will remedy that with a visit to the pool tomorrow. And I need to get back into mat work to strengthen my core. I'm grateful that I can get up from and down on the floor. But it's a lot more awkward than it used to be, so I have avoided it. Need to get back into it. Tomorrow.

One of the patient's mother complained about me. Said I was abrupt and rude to her on the phone and that I hung up on her. I don't remember hanging up on her before we'd said good-bye. I had to be abrupt with her because unlike the newbie secretary who was reading the thirty something child's chart to the mother, I knew we didn't have permission to disclose health care information to the mother. In addition to that, I was trying to get off the phone to call the patient to be fit into the opening we had for her. I could not get the mother to Shut Up. I had to repeat to her that I did not have signed permission from the patient to discuss her care with mommy. I told her we were trying to get her in. I even said I was trying to get off the phone to call the patient to get her into the office. 

So she complained about me. My practice leader talked with me about it today. And threw into the mix that the new front desk people were intimidated by me. Then she mentioned that I sometimes have an edge in my voice and I needed to soften it.  So sorry the years of therapy haven't made me more mellow. Or at least not mellow enough. I don't have time to chit chat as often as I'd like. I have work to do. There are four to five providers in the office at any one time and a good deal of their phone and insurance work comes to me. And I find what they need, or what i need to ask of them and spit it back out to them. It's tiring and it's hard to keep track of things.  Then there's the whole thing of correcting other people's mistakes or errors of omission and being soothing to the patient while trying to efficiently deal with the thing that wasn't dealt with in the first place. I hate mistakes. I especially hate it when I make mistakes. 

My Xanga is turning into a whiny bitch forum from me. Not a very sympathetic character, am I?

Blessings abound.

On

Today I feel like a used diaper. I ache all over. I can hear my mother's voice in my head telling me that I'm only aching because I made a doctor's appt. It's not true, I'm faking.

I am not.

So my therapist asked me yesterday," What would it mean to be partially disabled?"  

Maybe it would be a better question to ask, " What would it mean to admit you are partially disabled?" 

It's certainly not something I've wanted to own. Maybe it would mean more of a relaxed stance and less grinding of teeth to get through the day. 

If the doctor I'm seeing the twenty-fourth is accurate and fibromyalgia is a syndrome of symptoms indicating an undiagnosed illness, like chronic Lyme or yeast overgrowth, then maybe there is hope for me to regain some functionality. But it could mean a long course of treatment to correct whatever it is that I have railed against for the past twenty odd years. Because there is something not right about my physicality. I am unwilling to accept it any longer. That's why I am seeking out this doctor who has helped my friend.

I liked his attitude on the phone. There was this big energy coming through the receiver. I asked him if he wanted any of my old records. He said the only thing he would want would be any blood work I'd had done in the last three months. Of which there is none. What was pleasing to me was hearing, " If fibromyalgia is what you have and the other doctors were right, then you would be well and would not be contacting me."  

So we're starting fresh. Or at least he is. I am stuck with my narcissistic monkey mind chattering away about how could he figure it out if I couldn't. That's right. Sometimes I think I am so much smarter than everyone else. And sometimes I am, but not when it comes to diagnosing my self. But to have a life that might be as free of chronic pain as could be, with clarity and the ability to enjoy life? That's something worth working for. And I think it might just be possible for me.

For a little bit, I was fixated on the unknown What it is. I'm pretty sure it's not cancer or ms. They'd have diagnosed that by now. Right?

I've had this diagnosis for twenty years or so. I even think I remember the onset of the illness. My children's father and I were in the midst of building a log home, I had two small children and was working many hours in SCU with very little sleep. And one day I was so tired in the midst of the sawdust and decisions that my Father-in-law insisted on making despite what I wanted. And my husband wasn't standing up for us. I remember aching all over and feeling so tired. Feeling feverish. Feeling inflamed. That was the start of aching and fatigue. My mind fog became more apparent after my knee replacement surgery. I do not feel that I am as mentally sharp as I used to be. Mostly, I am tired.  

Things really seemed to go downhill for me about six years ago. I had a routine screening PPD, a test for TB exposure. It was blatantly positive. I had a chest x-ray the day I showed my doc the red, indurated area on the inside of my left forearm. The chest x-ray was negative, no active TB. I had been exposed to a patient in the previous year or so. He had multi-drug resistant TB.  Supposedly, he wasn't contagious. I saw infectious disease and did a four month course of Rifampin. I was sooooo sick from that medication. I took leave from work. It was horrible and I was tired. And brain fog! OyVey!

My husband and I concur: That was the start of decline for me.  So something got kicked off by the antibiotics, maybe. I obviously am grasping at straws here. But I am feeling hopeful about having more good days in the future. 

Blessings abound

   I haven't posted here in almost one year. Since my last post of March 11, 2011 I have endured Physical Therapy, worked part-time, had surgery to correct the problem with my spine and am trudging through recovery and rehabilitation. I had a very good hospital experience at Dartmouth-Hitchcock.  The four year old hardware was removed from my back and new hardware placed to reach up to where a disc had slipped into the canal of my spinal cord. Thank God I had invested in disability insurance. It replaced 60% of my income. I'm only working three days a week these days.  I feel beat up and achy after a day answering phones and giving advice, doing insurance paperwork and trying to keep up with the work that others seem unable to do when I am not at the office. 

   My surgery was in early August.  I was able to  spend time on the back deck over-looking our green yard. Sun warmed me, thawed my frozen muscles.  There were three days of no power here and husband being gone as Fire Chief to deal with the disaster that was Tropical Storm Irene. We were not hit as badly as the state to the south of us.  Still, it was interesting to be in a weakened state with no phone, television or radio. I read, but I had no real idea of what was going on in the area outside of our small home. Periodically, Erik would send one of the First Responders or Fire volunteers to check on me at home.  They would inquire to see if I needed help, render assistance and then be gone to the more pressing business at hand.

   Through out this process, I have had glimpses of what being pain free can mean for me. The severe pain is gone. I still have to walk with a cane on dry land. There are some muscular concerns that bring a pain mimicking the worst of the spinal stenosis pain.  Some days, though, I reside in a body feeling the quiet of a body no longer screaming with pain. Those are days when everything looks better, sounds are crisper and life is just better!  However, there are other days where the pain of fibromyalgia is lurking in my fibers, making me ache, my joints tender, my muscles stiff as if I had worked really hard at something the day before. 

   I've had the diagnosis of fibromyalgia for about twenty years. Mostly it's been managed with anti-depressants.  Exercise helps.  Right now I'm in the middle of a flare and there is no respite from this low-grade, mid--range gnawing ache. Through discussions with friends, I have come to agree that fibromyalgia is a syndrome of symptoms that no one has gotten to the bottom of.  To that end, I have made an appointment with a physiatrist in Hanover who specializes in patients with chronic fatique and fibromyalgia.  He comes highly recommended.  I have seen the progress a friend has made as he treats her symptoms of chronic Lyme disease and systemic yeast overgrowth. I am suspicious that I have the latter.  I've had numerous courses of IV antibiotics accompanying the surgeries I have had. And I crave sugar. I can get away for it a little while and then BAM!! back come the demands of cravings.  I've gained back ten pounds of the thirty that I had lost when I gave up sugar after the firewalk.  I am interested in discovering if there is a diagnosis that explains my Fibromyalgia, something that can be treated and make it go away.  I am no longer able or interested in bulling through whatever this is that causes my pain. I want more of those days where I feel pain free. I am a much nicer person when I am not having pain. Just ask me!

My appointment with the good doctor is on February 24. I am hoping that there are answers. I am willing to do the work needed to help cure this and help me feel better. I think I will continue my exercising and trying to increase my time at work while I seek help for this syndrome of pain and sleep disturbance.

Blessings abound.

Today has been mostly painfree.  For this I am very grateful. Blessings abound

   I am experiencing less pain. Physical Therapy continues. I am once more a member of the only local gym that has a swimming pool and going there to walk in the water. I have been reluctant to pull myself out of the house and my habit to make the trek to the pool. After I've gone, I feel strange, trance-like from walking the laps, counting the steps. I was walking, watching the mirror water reflect the painted blue ceiling, the trees from outdoors on the hill superimposed on the blue. I feel so light when I am in the water. I tried a little swimming the first day and it felt good, but my back was protesting in that prone position. I switched to a back stroke where there was more comfort to be had. Yesterday, I did not swim, only walked the laps alternating with side lunges the length of the pool. 

   My legs are not as strong as I would like them to be. I have not pushed through the pain of the last several months to keep myself strong. I have stayed in positions least likely to aggravate the pain only to be reminded that movement makes the pain feel better once I get through the initial discomfort. I do not move enough, that is a truth that  I have created for myself. In PT I am once again on the elliptical. My legs complain at the burden of my 259 pounds being borne on them. I increased from five minutes on Thursday to six minutes on Friday. The elliptical is boring at PT.  There is nothing to distract the evil whisperings of my mind. "Too hard, too heavy!" the fickle mind protests. "Too boring! Too hard! Too heavy!"  This despite the loss of thirty pounds. I find myself wondering how much worse it would be if I had not shed those thirty pounds. I find myself thinking that cane augmented ambulation would not be enough. I would be one of those overweight soulds who walks with wheeled walker with a bench.  While a nice invention for those who need it, I am not at all wanting to be the proud owner of such an assistive devise. Yet if I do not get my ass in gear, it will be one of those or worse, a wheel chair. I do not want these. Not at fifty two. 

   Is it wrong that one of the carrots I wave in front of my mulish face is the thought of playing with any grandchildren who might one day come my way?  As I side lunge my way the pool's length and back, I think about moving with a young child, playing some tag, some hide and seek. I imagine I am an active Oma. And while my imagining is not meant to coerce my children and their mates to provide me with the little ones in my dream, it is a way to remind myself to be prepared, to make ready so that I can participate in whatever might be offered to me in the way of another generation. So I will go to the gym, I will walk in the water, i will do the boring elliptical, I will get back on my recumbent bike and move into a future with them. Some days it is easier to take care of myself with the idea of them rather than for my own good.

Blessings abound.

  The world conspires to enable me continuing in a black, foul funk.  So far I have not indulged that opportunity today.  Not very much, at any rate. There was a phone call from my sister regarding the latest misadventure of our mother and her dementia. That threatened to turn the very day into one cataclysmic upset. Stuff with my mother does that to me.  So for a while today I dealt with in a very engrossing way: I cleaned my husband's back brace velcro of the accumulated hairs and fibers that were threatening to make it unusable.  I knew enough not to obsess over removing all the fibers and hair (what does he do, rub this on the labrador?) accumulated in each of those little wire loops. I did remove enough to construct a little golf ball of fiber. 

Then I dressed and went out into the snowy second day of Spring. I went without my cane, because using it would just piss me off. I set my sights on a tree up the road. It is always up the road here. Anyways, I made it up the road to the tree I'd set my sights on earlier. Then I walked a little farther up the road to a place where the road plateaus for a tiny bit. I used the red Forest Service property marker as a reminder of how far I could go on this, my second day of going for a walk. I turned around and made my way back down the road.  My legs felt wishy washy and were not feeling strong. My legs haven't felt strong for a while now. But I made it back to the homestead and chatted with Erik for a little bit. The whole time I was walking, Lora was barking in protest at being left in the yard. Usually I will allow her to come with me off leash. But the road was snow on top of ice and I could not bear the thought of my poor dog ending up under somebody's vehicle wheels. And I knew I could not handle her on the leash today. When I returned to the yard, she started tossing her marrowbone up and about, letting it plunge into the granular snow refrozen after yesterday's melting temperatures. She was that happy to see me back. Since I have returned to the house she has not left my side. She rests on the floor next to the green recliner.  I feel a little more peaceful than I did before my walk. 

Another cause to celebrate: I finally found the headphone jack on my computer so I can listen to music while Erik watches television. This makes me very happy, as the music helps to lift my mood and keep me happy enough not to search for food to eat to occupy my time. 

I've been considering lately why I, and some of the women with whom I am friends, loathe exercising, resent it when we do it and feel better afterwards. It usually sounds like a grudging acceptance of a terrible fact of life, when in fact it can be considered a gift to move one's body. I know that I do not appreciate it often enough. I miss the bigger types of movement I have enjoyed in my past: softball, basketball. Tag with my kids. Running around outside naked on a chill April night, playing hide and seek with my lover, crouched beneath the deck watching him search for me while I sprinted back to the safe tree when he bypassed my hiding spot, unaware of where I hid. I miss the big stuff. If I don't watch out, I will start to miss the little stuff:walking in the house, walking outside, walking walking walking. It doesn't need to be a hike of the Long Trail with a full pack over three days. I would like to walk once more on easy hiking trails, maybe down to Silver Lake and back. Maybe up to the Falls of Lana. If I do not make these smaller walks, building my endurance on the incline that lurks outside my door, I will not be able to make the bigger walks in the woods, along the Robert Frost trail. For now, I need to practice walking everyday. Move it or Lose it. Literally.

Blessings abound

I have a monster headache. The kind that makes me think that typing a blog is not a good thing. I've been for a walk, visited the neighbors for coffee with Erik, repaired a sweater and worked on a new pair of socks to send to my daughter-in-law.  Erik and I have been having a lovely day together until somebody, I don't know who, stopped by to see The Chief, and now they are at the fire station. This is just pissing me off big time. 

We have a rule, supposedly, about Sundays. Sundays are no laundry days. He's been doing laundry. Sunday's are NO FireDepartment days -unless of course there is a call.  This afternoon we were watching the ball game while I repaired the sweater that he loves and that I have come to loathe. I don't know who showed up here, because frankly, if I had gone out to greet our visitors, I would have been a pissy bitch. Erik was all, " I'll be back."  I fucking hate the Fire Department and the seeming lack of boundaries we have in our lives because of it. I don't know why these idiots can't use their telephone to call and set up a time. Erik does this, too, which drives me crazy when I let it. He would rather drive to someone's home and talk with them then pick up the telephone and make the call. Appeals to use the phone to save money on gasoline fall on deaf ears because he says it's easier to go to their home or place of business to speak face to face than it is to use the phone. I hate it at work when patients just drop in and I hate it in my home. If I could erect a giant impenetrable dome around my home to keep the VFD out on Sundays or when I'm having time with my husband, I would.

I think I'll put an ice pack on my hot head and cool down.

Blessings abound

   Yesterday I saw the Spine Doc. Overall, a very good report. Yes, there is Spinal Stenosis at the level of lumbar vertebrae three and four. But he doesn't feel it warrants surgery at this time. We didn't really address the weakness in my left leg other than to say that I continue with Physical Therapy and go back to the pool at Vermont Sun. I had dropped that membership because I wasn't using it so much once I was feeling better. I think there were some financial constraints around it's use, also.   At any rate, I need to contact VT Sun about reactivating the membership and the costs associated with it. 

  It's good that surgery is not needed. What this emphasizes for me is that I am the one who needs to help me the most. As a rule, I wish that my providers have a magic wand to wave so that I will be instantly better. And by instantly better, I mean no attention to diet, exercise or energy work by me.  Diet has been better up until the last week or so. Craving sugar and eating because of the pain I'm experiencing. It's always been part of the illness scenario for me.  And having some tasty goody show up to smooth over the pain was always part of it, mostly from my dad: peppermint ice cream after knee surgery, soft scrambled eggs with steak and peppers for a really lousy sore throat. I eat to recapture that feeling of being loved when ill health has made me feel low.   I've been watching this behavior over the last few weeks and see that it's a way of comforting me. Not always the most helpful, but something that did work once in the past that does not work so well for me now.  

PT has brought to my attention another area where I can improve my self care. I am a second degree Reiki practitioner. Perhaps I use the word practitioner loosely, as I haven't used it much over the past couple of years. I offer it out to friends here and there. One thing that I haven't done in all this time, that I should have been doing, is self Reiki. I have neglected my self-treatment. When at PT Thursday, Judy and I were working with this stubborn pain in my left buttock, right where the sitz bone is. Judy brought up the possibility of it being an energy cyst. She then facilitated some myofascial releases in that area.  The question came up from me, " Is this because I haven't been giving myself Reiki?" The immediate answer from Judy was "yes".  The work made me cranky (what doesn't seem to make me cranky these days?) so I came home and napped. I felt somewhat better after the nap so I researched "Energy Cyst".  An energy cyst, according to Upledger is a pocket of energy from an old injury.  It is disorganized energy that penetrates as deeply into the body as it can and then stays in an area.  My understanding is very basic but it made sense to me. Especially with the number of times I have fallen in the last year. I even think I know which fall it was.  My body's memory is pretty reliable with those sorts of things.  So Thursday night I tucked myself in and gave myself Reiki. I drifted off to sleep, feeling really well and peaceful. The next day, no pain. None whatsoever. It was marvelous. It was Friday the sun was shining and I felt so much better. Last night I repeated the Reiki and did not feel peaceful at all. Perhaps part of that can be accounted for by the approaching full moon outside my window. I was very aware of the things that were dragging my energy down: stool in my colon, the chocolate cake in my stomach sluggishly sitting there, not digesting. My itchy mind.  The energy was ineffective in penetrating my core because of blocks I had put in my way: crappy food leading to crappy digestion. I was full of shit and it was preventing me from being better. I'm pretty sure that more Reiki is in order to help me move past this and to move through this. The blockage was successfully passed this morning and I am feeling lighter. The Girl Scout cookies are in the freezer where I will leave them. The open box is going into the compost with dish soap so I don't ingest anymore of them. 

There was a Firewalk last night in Spirit Hollow. I didn't go because I didn't think I could manage the walking.  I want to make it to the next one.  I like what a Firewalk has to offer me, the chance to transform my energy, to help me through to another level. Ceredwyn and I have talked about having a fire walk in Ripton. Maybe it's time to get that going. 

Blessings abound