The period of adjustment to not working was a roller coaster. With time on my hands and a brain that wanted creative stimulation I began producing greeting cards. The cost of ink for an Epson printer is astronomical, but when using antique pictures for your basis you can't really make a marketable image without nice, crisp results. Other printers couldn't approach the quality.
I could create wonderful cards, I thought, and sell them and if Social Security collapses I'll have some way of making a living because there was little doubt I was not going back to nursing. And I was not very marketable as an unreliable employee who had several off days a week and needed a nap. I could do this from home, I thought, and find a little shop to carry them. They were loved--by very few people. I couldn't pay my booth rent with cards alone so the shop dealer suggested I try a few antiques to supplement the cards.
My love for art deco dishes was overflowing. I bought a bunch of art deco dishes. But they don't sell well in our area and I'm not going to last past the year. Rearranging and dusting the shelves once a week is a daunting task. I barely make rent. Negative income. So that's not going to suck any more of my time.
My Neurologist emphatically wants me to remain as active as possible, so the hunt for a bargain antique at Good Will seemed like a reasonable form of exercise. Once every week or two the stroll around the store pushing the shopping cart would be tiresome but doable. Then my right foot and ankle started to get stiff and we went through Physical Therapy which was not a disaster, just another layer of problems making problems of their own.
So I had to see a podiatrist who X-Rayed my foot and determined what my Neurologist had already confirmed: I had foot drop with rotation of my foot. So she (the Podiatrist) suggested a walking boot for the meantime and a brace for later after they cast an impression of my foot and shin. But after sending me home with a boot I could barely move in that was uneven with any pair of shoes I possessed, my insurance company sent a letter saying they weren't committing to paying for the orthotic device, and that among the reasons were that they didn't cover braces, I might have gone to the doctor too many times, and on and on.
So I have an 800 number to call to spend an entire morning on hold before talking to a human being. I'm psyching myself up for that. It would have been nice to know I had a limit on the number of Dr visits I could make in a year. News to me, but then I don't go constantly, it just feels like it!
Meanwhile I have found a Parkinson's Support Group where they teach both vocal exercises and physical exercises and I will be going several times a week to try to stay ahead and postpone more digression of capabilities. All they ask is a donation each time you visit and a nominal family annual membership fee.
With my first long-term disability letter came the warning that in 2 years they would revisit my case and if they thought I could maintain some kind of work after seeing their doctors, I would be terminated from their program. That is a frightening scenario for me. While my Neurologist says it is not reasonable to expect me to work, I look OK, am able to walk, although it hurts after any length of time, and I see people worse than me at the support group (and, amazingly, much older and doing much better, so I don't get it). After looking up the underwriter online I found they are noted by attorneys for their propensity to deny further coverage after two years. I will be glad to know which way it is going to go since it stresses me out so much. We were not planning on my retiring for at least 6 or 7 more years and we're feverishly trying to prepare for a huge cut in income. I don't know whether to get an attorney now or wait to see what happens.
Tuesday, October 12, 2010
Monday, September 27, 2010
Getting Real: Meds and Symptoms
It might help the reader to know I was a practicing Registered Nurse for 24 years before I took FMLA thinking we would work the meds out and then I could return to work. Of course Neurology was not my practice and I have learned from both instruction and experience that one never treats one's family or oneself when there is disease or illness. First aid is OK, and CPR is a no-brainer. But you either don't see things or you know too much and jump to all kinds of conclusions.
In one of my other roles as wife of the high school sweetheart and father of our five children, I summoned my nursing skills to pack the wound unhealed on my spouse's head. It was left on the graft that covered the area where his then stage III Malignant Melanoma had been. The borders of the graft had taken nicely but the area right over the original site of the Melanoma had a troublesome spot that had remained dark, soupy, and failed to fill in with healthy pink tissue.
The surgeon had cleaned it and said we would need to pack it with iodoform gauze, something I had done in my Pediatric practice with deep wounds. I understood the concept. I was in his, the surgeon's, element and he was the one who was running the show. I could do the packing easily. But over time, I had some anxiety about the failure of the area to heal, and on the second post-operative visit expressed it. The surgeon assured us that it just took time. More packing, more gauze. Every day, for two months, and it still would not heal. I felt sickness rising in my throat every time I looked at it. I called the office, concerned.
On that third visit to his office he finally ordered the biopsy I had wanted to scream for the moment he removed the bandaging over the graft site and I saw the black looking clot right over the spot where the mole had been. Of course it was positive and to make my point, although I was trying not to be one of those people who try to diagnose their own family, my instincts had been right all along. It was a cancer surgeon who did the next several surgeries that saved his life despite the advancement out of the regional lymph nodes, making the cancer stage 4.
Long before my diagnosis with Parkinson's my sleep patterns were pretty rocky, and I talked and thrashed about in my sleep occasionally. My husband had taken to wearing ear plugs and I tried to "rest" more on my days off. With sometimes unpredictably long work hours in my practice and all the demands of daily life we had blown it off. I knew I had been waking several times a night but just laid there trying not to wake my spouse.
Now I was having serious problems with side effects of the Parkinson's medications. Staying awake on the road and at work was becoming a dangerous
problem. A sleep study was done with shocking results: I was near-awake approximately every 10 minutes at night.
Hearing my own doctor tell me I needed to be my own advocate was overwhelming. I hated advocacy. I had done it for most of my adult life--with a gifted child who could read and understand and apply geometrical shapes and math as she entered kindergarten, with a developmentally delayed child, undiagnosed for 4 years despite visits to 3 different pediatricians and a neurologist, and then for a child who was unrelentingly bullied.
The death of a child in a needless accident on a Personal Watercraft just 3 weeks after my husband's last surgery had led to my advocacy for Personal Watercraft Safety. I had co-founded a loosely formed coalition of parents whose children had died in PWC accidents who pushed for more boater education laws and better design of Personal Watercraft. This advocacy included compiling reports and speaking to large groups of people from all over the world, meeting with ranking officers of the Coast Guard, and Boating Law Administrators. Because of our ten years of effort, including time, immersion in study and analysis, money spent, and travel several times a year, the top designed craft now have brakes and off-throttle steering. It was good our work was about wrapped up as I received the first diagnosis of Parkinson's.
I had worked concurrently over those ten years, continuing as a Registered Nurse, and raising children. After the diagnosis I continued to work for about a year and a half before the critical point where it was just not possible any longer.
Most of my adult life it seemed that I was either the Little Engine that Could, or the Little Red Hen. I could do it all myself. When I heard those words, become an expert, my eyes glazed over. I wanted to go to a little island under a palm tree and stay a long time with a better book. This one was like playing the same key on the piano over and over again. We already had the Book of Job, and I was hearing Olivia Newton John singing "Have You Never Been Mellow".
So far I had been on 3 different Dopamine Agonists that I did not tolerate well. Although because I am pretty sensitive to drugs they had slowly ramped up the dose to increase the effectiveness I never got to what would be considered a therapeutic level because I WAS LITERALLY FIGHTING SLEEP WHILE TRYING TO HOLD A CONVERSATION. I was feeling less and less effective with every effort when at work, and it took me forever to do simple things.
Now I was trying Amantadine, which works to control some of the symptoms, but instead of making me sleepy it exacerbated my already largely disturbed sleep. Taking first one, then two, and finally 3 daily, I was awake for hours, doing and doing, then exhausted but sleepless and unproductive by the third day. We agreed I would try two daily, which worked moderately well, when I remembered to take the second one. Subconsciously I think I didn't want to take them.
I had developed a heart palpation and although testing showed PVC's (pre-ventricular contractions of the heart) a stress test showed no real pathology. I was now taking medication for high blood pressure that appeared out of nowhere on the day of my diagnosis with Parkinson's, sleep, GERD (another gift from Parkinson's) and the arrhythmia. There was some possibility the Amantadine was the cause of the PVC's, but it might also be my age, post-menopause. My Internist gave me a beta blocker which helped a lot but not completely. I was loathe to have another problem.
My neurologist and I decided to give a trial off the Amantadine and the beta blocker. My sleep was a little better, but I still woke frequently. Until the 7th day I felt no palpitations, then had a run for several minutes. So that was clear pretty clear. I had sleep disturbance with and without Amantadine and not taking it was not going to make the palpitations go away. We agreed I would try the Amantadine again 2 times daily, avoiding taking it after 3 for a little better sleep.
Over the next couple of months I started noticing pain in my right shin area and the inner aspect of the right arch. If I walked around in a big store I would be hobbling or limping by the time I was out. Since pushing a cart took the strain off my right arm, that was working for a while as a way of staying active. But now this was becoming an aggravation. I called and asked for a Physical Therapy evaluation after my ankle seemed locked and red. But it was time for my appointment.
I sat on the bench with my shoes off so she could compare the right and left foot and ankle. I knew the drill. When I told her about my complaint she looked across at my feet and said for the second time, "When did that happen?"
I remembered her sort of anxious response on the last visit when I told her that I had noticed waking with the soles of both feet virtually touching with the ankles extended. She had asked if they were like that all the time and I shrugged and said that once I got up and walked it seemed no problem. She examined it now and said, "Your foot has turned."
I was not aware of that. I tried to imagine why that would happen. You try to assimilate all the stuff that can happen with your disease process. You accept it and you negotiate for as normal a life as possible, and you stay active as you can. You try to keep some semblance of normalcy. It had always helped to be a nurse while raising my kids, and even when I was out of my element with my spouse's cancer. But wrapping my head around this was bigger than me.
She, of course, ordered the PT, and talked to me about what we were looking at if the Amantadine was not going to work. We had to decrease the tremor somehow or I was going to have more problems. I got it. I was going to have to GET REAL. She offered that we could try a drug out of Canada, and that if that didn't work the next recourse was the Dreaded Levadopa. I thought for about 2 seconds about that
and countered that I didn't think I had tried hard enough with the Amantadine. I had thought I could live with the shaking, never considering the damage it could do to muscles, tendons, and ultimately, bones.
So she agreed to let me try it again, and in my mind I said goodbye to a negotiatedly slower life where I could sort of slip through the day going to a shop or lunch here and there and skimming over the housework lightly, slowly throwing out and giving away the too-many-things we had accumulated in the same house for 21 years. Now I knew it was serious. The clock was ticking on my independence. I was going to need HELP! The Little Red Hen was going to need to
call the pig, the dog, the cat, and the cow if necessary to get things done.
And I was going to have to REST, that is, TAKE A NAP to make up for lost sleep.
Or in a few years I was going to be on levadopa with all its' lovely side effects.
I left with the prescription for the Canadian drug knowing if I tossed and turned every night I was taking Amantadine 3 X a day no matter what. I looked healthy and my mind worked perfectly well. But even my closest friends found it hard to comprehend I was not really up to a trip to the thrift store. I began earnestly trying to shrink the inventory of my antique dishes booth at the Antique mall in anticipation of shutting it down completely. When I couldn't sleep I categorized and prioritized tasks to shrink the scope of upkeep in our home.
I began to admit frankly that I had Parkinson's and learned to brush off the look of pity I sometimes saw when people learned for the first time. And I told the truth about how I felt. I thought, this is like having a child with Autism and a child who died. Both uncomfortable subjects. Well, my life is full of uncomfortable subjects and I still laugh and joke and read and learn. And what is Parkinson's to me??? A Big Aggravation I can't just ignore!
In one of my other roles as wife of the high school sweetheart and father of our five children, I summoned my nursing skills to pack the wound unhealed on my spouse's head. It was left on the graft that covered the area where his then stage III Malignant Melanoma had been. The borders of the graft had taken nicely but the area right over the original site of the Melanoma had a troublesome spot that had remained dark, soupy, and failed to fill in with healthy pink tissue.
The surgeon had cleaned it and said we would need to pack it with iodoform gauze, something I had done in my Pediatric practice with deep wounds. I understood the concept. I was in his, the surgeon's, element and he was the one who was running the show. I could do the packing easily. But over time, I had some anxiety about the failure of the area to heal, and on the second post-operative visit expressed it. The surgeon assured us that it just took time. More packing, more gauze. Every day, for two months, and it still would not heal. I felt sickness rising in my throat every time I looked at it. I called the office, concerned.
On that third visit to his office he finally ordered the biopsy I had wanted to scream for the moment he removed the bandaging over the graft site and I saw the black looking clot right over the spot where the mole had been. Of course it was positive and to make my point, although I was trying not to be one of those people who try to diagnose their own family, my instincts had been right all along. It was a cancer surgeon who did the next several surgeries that saved his life despite the advancement out of the regional lymph nodes, making the cancer stage 4.
Long before my diagnosis with Parkinson's my sleep patterns were pretty rocky, and I talked and thrashed about in my sleep occasionally. My husband had taken to wearing ear plugs and I tried to "rest" more on my days off. With sometimes unpredictably long work hours in my practice and all the demands of daily life we had blown it off. I knew I had been waking several times a night but just laid there trying not to wake my spouse.
Now I was having serious problems with side effects of the Parkinson's medications. Staying awake on the road and at work was becoming a dangerous
problem. A sleep study was done with shocking results: I was near-awake approximately every 10 minutes at night.
Hearing my own doctor tell me I needed to be my own advocate was overwhelming. I hated advocacy. I had done it for most of my adult life--with a gifted child who could read and understand and apply geometrical shapes and math as she entered kindergarten, with a developmentally delayed child, undiagnosed for 4 years despite visits to 3 different pediatricians and a neurologist, and then for a child who was unrelentingly bullied.
The death of a child in a needless accident on a Personal Watercraft just 3 weeks after my husband's last surgery had led to my advocacy for Personal Watercraft Safety. I had co-founded a loosely formed coalition of parents whose children had died in PWC accidents who pushed for more boater education laws and better design of Personal Watercraft. This advocacy included compiling reports and speaking to large groups of people from all over the world, meeting with ranking officers of the Coast Guard, and Boating Law Administrators. Because of our ten years of effort, including time, immersion in study and analysis, money spent, and travel several times a year, the top designed craft now have brakes and off-throttle steering. It was good our work was about wrapped up as I received the first diagnosis of Parkinson's.
I had worked concurrently over those ten years, continuing as a Registered Nurse, and raising children. After the diagnosis I continued to work for about a year and a half before the critical point where it was just not possible any longer.
Most of my adult life it seemed that I was either the Little Engine that Could, or the Little Red Hen. I could do it all myself. When I heard those words, become an expert, my eyes glazed over. I wanted to go to a little island under a palm tree and stay a long time with a better book. This one was like playing the same key on the piano over and over again. We already had the Book of Job, and I was hearing Olivia Newton John singing "Have You Never Been Mellow".
So far I had been on 3 different Dopamine Agonists that I did not tolerate well. Although because I am pretty sensitive to drugs they had slowly ramped up the dose to increase the effectiveness I never got to what would be considered a therapeutic level because I WAS LITERALLY FIGHTING SLEEP WHILE TRYING TO HOLD A CONVERSATION. I was feeling less and less effective with every effort when at work, and it took me forever to do simple things.
Now I was trying Amantadine, which works to control some of the symptoms, but instead of making me sleepy it exacerbated my already largely disturbed sleep. Taking first one, then two, and finally 3 daily, I was awake for hours, doing and doing, then exhausted but sleepless and unproductive by the third day. We agreed I would try two daily, which worked moderately well, when I remembered to take the second one. Subconsciously I think I didn't want to take them.
I had developed a heart palpation and although testing showed PVC's (pre-ventricular contractions of the heart) a stress test showed no real pathology. I was now taking medication for high blood pressure that appeared out of nowhere on the day of my diagnosis with Parkinson's, sleep, GERD (another gift from Parkinson's) and the arrhythmia. There was some possibility the Amantadine was the cause of the PVC's, but it might also be my age, post-menopause. My Internist gave me a beta blocker which helped a lot but not completely. I was loathe to have another problem.
My neurologist and I decided to give a trial off the Amantadine and the beta blocker. My sleep was a little better, but I still woke frequently. Until the 7th day I felt no palpitations, then had a run for several minutes. So that was clear pretty clear. I had sleep disturbance with and without Amantadine and not taking it was not going to make the palpitations go away. We agreed I would try the Amantadine again 2 times daily, avoiding taking it after 3 for a little better sleep.
Over the next couple of months I started noticing pain in my right shin area and the inner aspect of the right arch. If I walked around in a big store I would be hobbling or limping by the time I was out. Since pushing a cart took the strain off my right arm, that was working for a while as a way of staying active. But now this was becoming an aggravation. I called and asked for a Physical Therapy evaluation after my ankle seemed locked and red. But it was time for my appointment.
I sat on the bench with my shoes off so she could compare the right and left foot and ankle. I knew the drill. When I told her about my complaint she looked across at my feet and said for the second time, "When did that happen?"
I remembered her sort of anxious response on the last visit when I told her that I had noticed waking with the soles of both feet virtually touching with the ankles extended. She had asked if they were like that all the time and I shrugged and said that once I got up and walked it seemed no problem. She examined it now and said, "Your foot has turned."
I was not aware of that. I tried to imagine why that would happen. You try to assimilate all the stuff that can happen with your disease process. You accept it and you negotiate for as normal a life as possible, and you stay active as you can. You try to keep some semblance of normalcy. It had always helped to be a nurse while raising my kids, and even when I was out of my element with my spouse's cancer. But wrapping my head around this was bigger than me.
She, of course, ordered the PT, and talked to me about what we were looking at if the Amantadine was not going to work. We had to decrease the tremor somehow or I was going to have more problems. I got it. I was going to have to GET REAL. She offered that we could try a drug out of Canada, and that if that didn't work the next recourse was the Dreaded Levadopa. I thought for about 2 seconds about that
and countered that I didn't think I had tried hard enough with the Amantadine. I had thought I could live with the shaking, never considering the damage it could do to muscles, tendons, and ultimately, bones.
So she agreed to let me try it again, and in my mind I said goodbye to a negotiatedly slower life where I could sort of slip through the day going to a shop or lunch here and there and skimming over the housework lightly, slowly throwing out and giving away the too-many-things we had accumulated in the same house for 21 years. Now I knew it was serious. The clock was ticking on my independence. I was going to need HELP! The Little Red Hen was going to need to
call the pig, the dog, the cat, and the cow if necessary to get things done.
And I was going to have to REST, that is, TAKE A NAP to make up for lost sleep.
Or in a few years I was going to be on levadopa with all its' lovely side effects.
I left with the prescription for the Canadian drug knowing if I tossed and turned every night I was taking Amantadine 3 X a day no matter what. I looked healthy and my mind worked perfectly well. But even my closest friends found it hard to comprehend I was not really up to a trip to the thrift store. I began earnestly trying to shrink the inventory of my antique dishes booth at the Antique mall in anticipation of shutting it down completely. When I couldn't sleep I categorized and prioritized tasks to shrink the scope of upkeep in our home.
I began to admit frankly that I had Parkinson's and learned to brush off the look of pity I sometimes saw when people learned for the first time. And I told the truth about how I felt. I thought, this is like having a child with Autism and a child who died. Both uncomfortable subjects. Well, my life is full of uncomfortable subjects and I still laugh and joke and read and learn. And what is Parkinson's to me??? A Big Aggravation I can't just ignore!
Monday, May 3, 2010
3 years
How is it possible it has been 3 years since I noticed the first symptoms of Parkinson's? How has life changed? I don't drive far and avoid freeways. Aches and pains I would have assigned to much later in life. Sleep problems that are better sometimes and worse others. Naps. People staring at my shaky right arm. Medications with side effects worse than the disease--so me and the Neurologist agree being able to conduct as normal a life as possible is the current goal. No longer working. Writing more, but taking it in bits. Closer to friends and family.
Priorities seem clearer. It's not really all that bad. Consider a closed head injury or Cancer. I'll take the Parkinson's.
Priorities seem clearer. It's not really all that bad. Consider a closed head injury or Cancer. I'll take the Parkinson's.
Tuesday, April 27, 2010
Aches and Pains
Would you say there has been a lapse in reporting? I get one thing done every day. That is about it. Hardly ever do anything with cards any longer. Seeing a therapist once a week so I can work through not being able to sleep or multi task. But I'm happy, I think! Have great friends and family, so just concentrate on that. My left leg now shakes occasionally and my right regularly. All you have to do is flex it at the knee and support your leg with your foot and it will just sort of vibrate. Left less than right. Right arm is weak, grip and dexterity of right hand decreased. Have trouble typing because I keep hitting the wrong keys, or one finger will vibrate hitting the key repeatedly. I am undaunted. I was always a writer and I refuse to give up. Back and shoulders hurt if I sit long though and I need to go for that reason. It is not all doom and gloom. You just get your priorities in order. :)
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