andrew
05-18-2008, 01:38 PM
**Karen's story - relocated from the original site by Andrew**
***Take note of the words she uses to sign off her story***
Never heard of it...
It’s hard to say when it all began, this sneaky illness that seemed to attack overnight. There was that cold that lasted too long and ended with strep throat. It didn’t seem to respond to the usual cold meds. Or was it the year before when my blood pressure became elevated? My family doctor didn’t seem to think that an 8 week cold was of concern, ditto that my blood pressure was suddenly high when my active healthy lifestyle hadn’t changed. You know when you’re over 40, these things happen. Then there was the ear infection following an unrelated surgery. Coincidentally, at the same time my old knee injury reared it’s ugly head and I was convinced I had a re-torn ligament. While I stressed myself out fighting the system to try to see a specialist, my condition worsened from the sore knee to an odd swelling of my lower leg that I had never experienced with knee pain. My family doctor was skeptical about the knee ligament & sent me for an ultrasound to check for DVT (deep vein thrombosis). Negative. In the following days I would experience bouts of pain that shook my body and visit the hospital emergency department twice waiting for hours, then a local clinic only to be sent home & told to take Tylenol for pain. This though my foot had dropped & I couldn’t lift it from a hanging position. At the end of my rope with frustration and now with a rash that I believed was caused by the antibiotic I had taken for the ear infection. (I know - what a mess). My husband, Chris & I made the decision to get the best night’s sleep possible, then the next morning, on Canada Day, to go to emergency & refuse to leave until we had some answers or at least some help. I took nothing for pain that morning and waited for the waves of pain to rack my body and chatter my teeth so the medical staff could see it wasn’t pain that could be managed at home. It would be a 12 hour day camping in emerg before I was finally admitted. I had no idea that it would be 40 days before I would see my home again.
In a morphine haze the first few days went by with a test here & there. An MRI of my spine, an MRI of my brain, an EKG, the MRI on my knee that I had been begging for, and who knows what bloodwork trickled in with nothing of note. Doctors came & went with no real answers and as my rash started to clear I was told they might send me home. Knowing something more was wrong, I insisted I was unable to manage the pain if released. They added a Neurologist to my chart to see me. Days went by and a nurse that had been off came in to see that I was still there with no answers. The Neuro on call hadn’t seen me for the 2nd day and had just left the hospital. Frustrated, she called one who was not on call.
On his day off, this doctor who would save my life, popped in for a casual visit, pulled a pushpin from the corkboard beside me to literally take a stab at my legs. The numbness in my leg & both feet seemed to mimic the pattern of the rash. He ordered a nerve conduction test. A couple days went by and he stopped by in the evening to tell me he hadn’t seen my results yet. The test had not been done. Off he went to find a wheelchair & whisked me away to run the test himself. An hour or more later he had a possible diagnosis of Wegener’s Granulomatosis. I would need a kidney biopsy to confirm it. By noon the next day I had been transferred to another hospital to the Renal Ward & the biopsy was complete. That evening it was confirmed, this rare type of Vasculitis, with an even more rare presentation of nerve involvement. I was in the middle of what was referred to as a flare.
My parents left Ontario immediately, not knowing what they were in for, only that I would need them. My family & friends quickly researched all they could on this illness finding descriptions of the symptoms but not much information to help with recovery not knowing there is no recovery per se, just a new normal to aim for. They changed my bed (not a nurse’s job & who knows where housekeeping is?) and helped me bathe and tried to lift my spirit. While they shielded me from some of the harshest information on kidney failure and facial deformity, I dealt as best I could with learning to fight something I had never heard of. It was of little concern to Chris & I that the treatment was likely to cause infertility since we had long ago decided not to have kids. The treatment, a combination of a chemo drug and a steroid had good prospects for putting this into remission, our goal now since WG is a lifetime commitment. WG is not usually a fatal disease if diagnosed. Undiagnosed can be a very different picture. It most commonly attacks the kidneys, ear nose & throat and moves on to lungs and other organs. In perhaps 10% to 15% of cases it involves “peripheral neuropathy” as it did in my case, causing numb legs and feet and/or hands. There is no guarantee that a lung involved “weggie” won’t someday have brain involvement, or a person with “Limited Wegener’s” which does not involve kidneys may someday have multiple organ involvement, however the disease often presents the same way if or when it flares. Within days of initial treatment my white blood cell count dropped dangerously low and the chemo drug had to be stopped. We were warned this could happen. It felt like a huge setback and I was afraid this known to be successful treatment might not work for me.
The next weeks would be a battle of my will. When I tried to eat, my fork fell out of my numb hand. I fell from my crutches and was given a walker. When I fell from the walker I was given a wheelchair. I didn’t know how to fight. Chris, at the hospital every night and probably more exhausted than I was, endured my bouts of tears and lashing out emotionally for this raw deal we had both been dealt. I got weaker by the day and watched my muscular legs disappear to sticks that wouldn’t hold me. I knew I was very sick but was not yet aware it was life threatening and was still waiting for an astounding full recovery. A month prior I was spending 4 days a week after full time work on the ocean paddling outrigger canoes. I was racing 10 to 15K outrigger races. On the off days I would go to the gym or hike trails for 5K & consider it just a walk with my neighbour’s dog. I was healthy, I was strong. This wasn’t me, this withering, snivelling mess with a bedsore on my butt. I had things to do. I was angry when I had the energy to be.
The hospital stay itself was an emotional roller coaster, from the initial drugged stage to recognizing my condition, the compassion and warmth of much of the staff to the food. Oh the food. The drugs caused me to go to borderline diabetic so the diet was bland as it built from liquid to soft foods. It also added 4 more pinpricks to my day as if I wasn’t a pincushion already. They taped a big foamy to my fork so I wouldn’t drop it. Ridiculously, I was quite insulted; did they think I could go through life carrying a big foamy fork when I was out to dinner? Occasionally I would lift a plate cover & cry. Some days Chris would whisk me away to the cafeteria in my wheelchair or bring in food. Out in the halls he made me wheel on my own to keep some strength. I kept track of the medications I was given as it made me exercise my numb right hand with something to write and also gave me a shred of a feeling of control. Fortunate that I did this as even in my drugged state I caught several medication errors and omissions. I told many of the friends who visited to watch for this in any other case they knew in the hospital. Some of the staff unfortunately appear to be just putting in time and some of them really care. Most of the nurses were outstanding. None had seen Wegener’s before.
The meds were starting to work and were expected to continue improving my blood. Although I was very weak and still prone to spontaneous waterfalls of tears, my spirit was peeking through. Chris, there every day, my parents everyday, my aunt there almost every day patiently read her book at my bedside when I slept. The friends, family and co-workers who visited had no idea what a boost to my days they were just in being there. I know how much re-planning of a day it takes to stop to see someone in the hospital. So many people made the trip, or several trips. Somewhat deluded still, I believed the medical profession would take on the responsibility to make me well. It would take a lot more of my input and efforts to allow that to happen. A scary transfer was being discussed.
There was still much support behind me in the form of family and friends, and much butt kicking from Chris when I was finally transferred from the Renal Ward to the Physiotherapy Ward. He had seen my tearful reaction to sympathy; it was time for me to return to as much of my former self as possible. My first session of 25 minutes of physio put me out for a 16 hour nap. This was a place with incentive to get well and go home. Gone was my private room with a walk-in shower that my family could help me with. After 2 days in the lobby I was moved to a double room with a Brady-bunch bathroom accessed by 4 patients. The new room brought a rotating roommate; snoring woman coughing up nothing I wanted to know about, vibrating smoker with crazy hair and shattered elbows who fell (?) from a 3rd floor balcony, 81 year old man who liked to read the paper in his wheelchair wearing only his underwear. Showers were every other day consisting of a free trip down the hall in a plastic wheelchair with a hole in the seat & little more than a hose held by the shower nurse. I was strong enough to be allowed control of my own soap and shampoo, woohoo. It felt like cell block C. If you didn’t ask for a shower you might not get one. Knowing the way back to emotional strength and confidence would start with my physical strength, I pushed my sessions longer and had more of them as cancellations opened. I willed my feet to budge while I sat in bed feeling like I wanted to be Jeannie of the lamp & bop my head to make them move. When the first hint of movement was there to raise my foot, hope bloomed. Several days later a toe wiggled. Such excitement. By the time I could walk the hall on crutches I was anxious to get home. The physiotherapist wrote a plan for me to follow and just days before my 42nd birthday I was home, 40 days from admittance.
I remember thinking in the hospital that going home would mean the ordeal was over & I could restart life. At home I was completely overwhelmed with new challenges. The toilet would have to be replaced with a taller handicap model as I couldn’t get up from a normal one without help. I couldn’t stand long enough to shower so I had to have a chair in the tub and a handshower installed. My first walk around the neighbourhood was about 100’ from the door of the house, not even to the next house. Having been given just the next morning’s medication at the hospital before my evening release, my handful of prescriptions had to be filled my first day home. My dad dropped off the paperwork at the drug store. Later we all took a wheelchair outing to Costco pharmacy where they placed a big cardboard box of pills on the counter, some for 90 days and started to ring up my total. The clerk looked at me & said that’ll be $1387.54, I tried hard not to burst into tears. We asked them to refill the most expensive ones for only 30 days and the change brought the total in just under $600. Home I went with my box of drugs. My dad built a spreadsheet of medications and required times of day and any other rules that went with the prescription. My mom and I spent an hour organizing my first week’s medication into pill cases. Costco pharmacy would become one of my most common outings over the months to come.
After a week at home and starting to toddle all the way to the stop sign, past my house and the next, I began the task of hitting the gym daily for physio work. My friend Jeannie who had visited me regularly in the hospital, bringing me fruit and braiding my hair, now showed up every afternoon to take me on my crutches to the gym. She pushed me when I needed it and held me back when we both knew I would pay for over doing it. A friend showed up at my house with a big basket full of vegetables and another with shampoo and conditioner to promote hair regrowth as mine was now mostly gone. Forgotten hairballs in the vacuum canister. Chris thought I left “wookies” in the drain when I was well, it was nothing compared to the piles that kept the water from draining at all. As it started to cover my clothes & feel like spiderwebs, I went to my hairdresser for a cut. We laughed about not telling her it was falling out before she washed it. There weren’t many laughs in the house at the time, but the few we had often centred around my hair or lack of it. When I complained it was everywhere, my mom in her most consoling voice advised ‘it’s ok honey, it won’t fall out forever”.
It took some determined days starting out with twice daily exercise sessions with a nap in between to graduate from the crutches to a cane and about 6 weeks from hospital to walking unsupported. Walking is a loose term for the drunk-girl stature I held challenging my balance & walking into doorframes or weaving along at a toddlers pace. With my left foot still fully numb and half of my right I continued to work out ignoring it as best I could. In my mind I wanted the muscles to be ready for the nerve regeneration. In fact, since the nerves control the muscles I was challenging, they were there, just not enough for me to have any sensation. In the 6th month, I started to have temperature sensation in my otherwise numb fingertips. Starting with half my hand completely numb and the other half tingling, the tingling side was normal and the numb side was tingling. Progress happily accepted at any level.
By the end of January, I had finished the chemo drug and transferred to Imuran for maintenance with the intention of it keeping me in remission. Imuran, or Azathioprine, was designed as an anti-rejection drug for organ transplants. Not as toxic as the Cyclophasphamide I had been on, it has good success with helping to retain remission in combination with low dose steroids. At this point having gone through multiple decreases from 75mg to 7.5mg per day, the symptoms similar to menopause were embraced as an ongoing joy of drug withdrawal. The personal saunas and night sweats were tolerable and I was getting used to the napping like a narcoleptic, it was only the joint pain that really bothered me. It’s amazing how much pain can be a nuisance after you’ve tolerated so much more. It wasn’t all bad, sometimes just annoying, like losing my sock or slipper for the 14th time that day and having to search the house to find it because I had no idea how long it was gone or where I left it. I never left the house without shoes that were tied on.
It was around this time that I found a group of “weggies” on line in a support group that welcomed me to the place where no one wants to be. Happy to have found others who had been dealing with this illness from weeks to many years, it gave me appreciation for the experience I had. Not that it discounted my experience at all, but made me realize it could have been so much worse. Many of these survivors have had several years of what they refer to as quiet time for fear of using the word remission. Many have taken years of a multitude of medications to get to that quiet place. Only a few have nerve involvement, but I’m the one who understands how someone loses a shoe in a grocery store and has to retrace their steps looking for it. There are over a dozen others who sleep 10-12 hours a day or more even when they are in a quiet phase. This group has experience with doctors attitudes, demanding care, medications, ongoing research for treatment and cure, and life in general with WG. They are a wonderful addition to my family and friends.
The nerves have begun to either confuse or regenerate or both and cause an unending selection of strange and sudden pains in my feet. Among my favourites are the pen in my right shoe or the rock under my left heel. There is no getting away from it, I don’t have to be wearing shoes or even be on my feet for those things to demand my attention. A couple of medical professionals have told me that nerve pain is the most excruciating pain. Someone I knew who had been electrocuted and experienced severe nerve pain throughout his body told me one day that nerve pain is all in your head. I looked at him incredulously. If anyone should understand this pain I had, it would be him. It’s mind over matter he explained, you don’t really have pain as you know it, your nerves are just giving the wrong message to your brain. Tell it to your brain. It’s hard to imagine that it actually helped me to think of that at times when the pain shot through me or when I felt my feet were freezing but were warm to touch. In February, my nerve conduction test showed that I could have full recovery in my right foot in only 10 more months. My left is not yet registering on the computer because the response is so small but the neurologist advised that the nerve connection is still there thus making possible the eventual regeneration, likely much more than a year away. Convinced that the shooting pains mean normal feeling will come, the intense toe wiggling challenges continue along with the exercises to strengthen the very weak left ankle.
This story continues, however I’m not there yet. While this illness makes you continually look over your shoulder for the next flare, I still believe I can be one of the survivors to remain in remission for many years if not the rest of my life. Statistics show that most diagnosed Wegener’s patients eventually die of something else. I think choking on a peanut comes before WG in the likelihood lottery. Anyway, there are worse situations and the most important things in life are not things. You find out there is a lot of care out there, family, friends, and friends of friends you may not even have met and doctors too. It’s not just a job it’s a learning experience for the wonderful team taking care of me.
Although I fight this fight within myself, I’m not alone.
Karen / BC Canada / dx WG 07/2007
***Take note of the words she uses to sign off her story***
Never heard of it...
It’s hard to say when it all began, this sneaky illness that seemed to attack overnight. There was that cold that lasted too long and ended with strep throat. It didn’t seem to respond to the usual cold meds. Or was it the year before when my blood pressure became elevated? My family doctor didn’t seem to think that an 8 week cold was of concern, ditto that my blood pressure was suddenly high when my active healthy lifestyle hadn’t changed. You know when you’re over 40, these things happen. Then there was the ear infection following an unrelated surgery. Coincidentally, at the same time my old knee injury reared it’s ugly head and I was convinced I had a re-torn ligament. While I stressed myself out fighting the system to try to see a specialist, my condition worsened from the sore knee to an odd swelling of my lower leg that I had never experienced with knee pain. My family doctor was skeptical about the knee ligament & sent me for an ultrasound to check for DVT (deep vein thrombosis). Negative. In the following days I would experience bouts of pain that shook my body and visit the hospital emergency department twice waiting for hours, then a local clinic only to be sent home & told to take Tylenol for pain. This though my foot had dropped & I couldn’t lift it from a hanging position. At the end of my rope with frustration and now with a rash that I believed was caused by the antibiotic I had taken for the ear infection. (I know - what a mess). My husband, Chris & I made the decision to get the best night’s sleep possible, then the next morning, on Canada Day, to go to emergency & refuse to leave until we had some answers or at least some help. I took nothing for pain that morning and waited for the waves of pain to rack my body and chatter my teeth so the medical staff could see it wasn’t pain that could be managed at home. It would be a 12 hour day camping in emerg before I was finally admitted. I had no idea that it would be 40 days before I would see my home again.
In a morphine haze the first few days went by with a test here & there. An MRI of my spine, an MRI of my brain, an EKG, the MRI on my knee that I had been begging for, and who knows what bloodwork trickled in with nothing of note. Doctors came & went with no real answers and as my rash started to clear I was told they might send me home. Knowing something more was wrong, I insisted I was unable to manage the pain if released. They added a Neurologist to my chart to see me. Days went by and a nurse that had been off came in to see that I was still there with no answers. The Neuro on call hadn’t seen me for the 2nd day and had just left the hospital. Frustrated, she called one who was not on call.
On his day off, this doctor who would save my life, popped in for a casual visit, pulled a pushpin from the corkboard beside me to literally take a stab at my legs. The numbness in my leg & both feet seemed to mimic the pattern of the rash. He ordered a nerve conduction test. A couple days went by and he stopped by in the evening to tell me he hadn’t seen my results yet. The test had not been done. Off he went to find a wheelchair & whisked me away to run the test himself. An hour or more later he had a possible diagnosis of Wegener’s Granulomatosis. I would need a kidney biopsy to confirm it. By noon the next day I had been transferred to another hospital to the Renal Ward & the biopsy was complete. That evening it was confirmed, this rare type of Vasculitis, with an even more rare presentation of nerve involvement. I was in the middle of what was referred to as a flare.
My parents left Ontario immediately, not knowing what they were in for, only that I would need them. My family & friends quickly researched all they could on this illness finding descriptions of the symptoms but not much information to help with recovery not knowing there is no recovery per se, just a new normal to aim for. They changed my bed (not a nurse’s job & who knows where housekeeping is?) and helped me bathe and tried to lift my spirit. While they shielded me from some of the harshest information on kidney failure and facial deformity, I dealt as best I could with learning to fight something I had never heard of. It was of little concern to Chris & I that the treatment was likely to cause infertility since we had long ago decided not to have kids. The treatment, a combination of a chemo drug and a steroid had good prospects for putting this into remission, our goal now since WG is a lifetime commitment. WG is not usually a fatal disease if diagnosed. Undiagnosed can be a very different picture. It most commonly attacks the kidneys, ear nose & throat and moves on to lungs and other organs. In perhaps 10% to 15% of cases it involves “peripheral neuropathy” as it did in my case, causing numb legs and feet and/or hands. There is no guarantee that a lung involved “weggie” won’t someday have brain involvement, or a person with “Limited Wegener’s” which does not involve kidneys may someday have multiple organ involvement, however the disease often presents the same way if or when it flares. Within days of initial treatment my white blood cell count dropped dangerously low and the chemo drug had to be stopped. We were warned this could happen. It felt like a huge setback and I was afraid this known to be successful treatment might not work for me.
The next weeks would be a battle of my will. When I tried to eat, my fork fell out of my numb hand. I fell from my crutches and was given a walker. When I fell from the walker I was given a wheelchair. I didn’t know how to fight. Chris, at the hospital every night and probably more exhausted than I was, endured my bouts of tears and lashing out emotionally for this raw deal we had both been dealt. I got weaker by the day and watched my muscular legs disappear to sticks that wouldn’t hold me. I knew I was very sick but was not yet aware it was life threatening and was still waiting for an astounding full recovery. A month prior I was spending 4 days a week after full time work on the ocean paddling outrigger canoes. I was racing 10 to 15K outrigger races. On the off days I would go to the gym or hike trails for 5K & consider it just a walk with my neighbour’s dog. I was healthy, I was strong. This wasn’t me, this withering, snivelling mess with a bedsore on my butt. I had things to do. I was angry when I had the energy to be.
The hospital stay itself was an emotional roller coaster, from the initial drugged stage to recognizing my condition, the compassion and warmth of much of the staff to the food. Oh the food. The drugs caused me to go to borderline diabetic so the diet was bland as it built from liquid to soft foods. It also added 4 more pinpricks to my day as if I wasn’t a pincushion already. They taped a big foamy to my fork so I wouldn’t drop it. Ridiculously, I was quite insulted; did they think I could go through life carrying a big foamy fork when I was out to dinner? Occasionally I would lift a plate cover & cry. Some days Chris would whisk me away to the cafeteria in my wheelchair or bring in food. Out in the halls he made me wheel on my own to keep some strength. I kept track of the medications I was given as it made me exercise my numb right hand with something to write and also gave me a shred of a feeling of control. Fortunate that I did this as even in my drugged state I caught several medication errors and omissions. I told many of the friends who visited to watch for this in any other case they knew in the hospital. Some of the staff unfortunately appear to be just putting in time and some of them really care. Most of the nurses were outstanding. None had seen Wegener’s before.
The meds were starting to work and were expected to continue improving my blood. Although I was very weak and still prone to spontaneous waterfalls of tears, my spirit was peeking through. Chris, there every day, my parents everyday, my aunt there almost every day patiently read her book at my bedside when I slept. The friends, family and co-workers who visited had no idea what a boost to my days they were just in being there. I know how much re-planning of a day it takes to stop to see someone in the hospital. So many people made the trip, or several trips. Somewhat deluded still, I believed the medical profession would take on the responsibility to make me well. It would take a lot more of my input and efforts to allow that to happen. A scary transfer was being discussed.
There was still much support behind me in the form of family and friends, and much butt kicking from Chris when I was finally transferred from the Renal Ward to the Physiotherapy Ward. He had seen my tearful reaction to sympathy; it was time for me to return to as much of my former self as possible. My first session of 25 minutes of physio put me out for a 16 hour nap. This was a place with incentive to get well and go home. Gone was my private room with a walk-in shower that my family could help me with. After 2 days in the lobby I was moved to a double room with a Brady-bunch bathroom accessed by 4 patients. The new room brought a rotating roommate; snoring woman coughing up nothing I wanted to know about, vibrating smoker with crazy hair and shattered elbows who fell (?) from a 3rd floor balcony, 81 year old man who liked to read the paper in his wheelchair wearing only his underwear. Showers were every other day consisting of a free trip down the hall in a plastic wheelchair with a hole in the seat & little more than a hose held by the shower nurse. I was strong enough to be allowed control of my own soap and shampoo, woohoo. It felt like cell block C. If you didn’t ask for a shower you might not get one. Knowing the way back to emotional strength and confidence would start with my physical strength, I pushed my sessions longer and had more of them as cancellations opened. I willed my feet to budge while I sat in bed feeling like I wanted to be Jeannie of the lamp & bop my head to make them move. When the first hint of movement was there to raise my foot, hope bloomed. Several days later a toe wiggled. Such excitement. By the time I could walk the hall on crutches I was anxious to get home. The physiotherapist wrote a plan for me to follow and just days before my 42nd birthday I was home, 40 days from admittance.
I remember thinking in the hospital that going home would mean the ordeal was over & I could restart life. At home I was completely overwhelmed with new challenges. The toilet would have to be replaced with a taller handicap model as I couldn’t get up from a normal one without help. I couldn’t stand long enough to shower so I had to have a chair in the tub and a handshower installed. My first walk around the neighbourhood was about 100’ from the door of the house, not even to the next house. Having been given just the next morning’s medication at the hospital before my evening release, my handful of prescriptions had to be filled my first day home. My dad dropped off the paperwork at the drug store. Later we all took a wheelchair outing to Costco pharmacy where they placed a big cardboard box of pills on the counter, some for 90 days and started to ring up my total. The clerk looked at me & said that’ll be $1387.54, I tried hard not to burst into tears. We asked them to refill the most expensive ones for only 30 days and the change brought the total in just under $600. Home I went with my box of drugs. My dad built a spreadsheet of medications and required times of day and any other rules that went with the prescription. My mom and I spent an hour organizing my first week’s medication into pill cases. Costco pharmacy would become one of my most common outings over the months to come.
After a week at home and starting to toddle all the way to the stop sign, past my house and the next, I began the task of hitting the gym daily for physio work. My friend Jeannie who had visited me regularly in the hospital, bringing me fruit and braiding my hair, now showed up every afternoon to take me on my crutches to the gym. She pushed me when I needed it and held me back when we both knew I would pay for over doing it. A friend showed up at my house with a big basket full of vegetables and another with shampoo and conditioner to promote hair regrowth as mine was now mostly gone. Forgotten hairballs in the vacuum canister. Chris thought I left “wookies” in the drain when I was well, it was nothing compared to the piles that kept the water from draining at all. As it started to cover my clothes & feel like spiderwebs, I went to my hairdresser for a cut. We laughed about not telling her it was falling out before she washed it. There weren’t many laughs in the house at the time, but the few we had often centred around my hair or lack of it. When I complained it was everywhere, my mom in her most consoling voice advised ‘it’s ok honey, it won’t fall out forever”.
It took some determined days starting out with twice daily exercise sessions with a nap in between to graduate from the crutches to a cane and about 6 weeks from hospital to walking unsupported. Walking is a loose term for the drunk-girl stature I held challenging my balance & walking into doorframes or weaving along at a toddlers pace. With my left foot still fully numb and half of my right I continued to work out ignoring it as best I could. In my mind I wanted the muscles to be ready for the nerve regeneration. In fact, since the nerves control the muscles I was challenging, they were there, just not enough for me to have any sensation. In the 6th month, I started to have temperature sensation in my otherwise numb fingertips. Starting with half my hand completely numb and the other half tingling, the tingling side was normal and the numb side was tingling. Progress happily accepted at any level.
By the end of January, I had finished the chemo drug and transferred to Imuran for maintenance with the intention of it keeping me in remission. Imuran, or Azathioprine, was designed as an anti-rejection drug for organ transplants. Not as toxic as the Cyclophasphamide I had been on, it has good success with helping to retain remission in combination with low dose steroids. At this point having gone through multiple decreases from 75mg to 7.5mg per day, the symptoms similar to menopause were embraced as an ongoing joy of drug withdrawal. The personal saunas and night sweats were tolerable and I was getting used to the napping like a narcoleptic, it was only the joint pain that really bothered me. It’s amazing how much pain can be a nuisance after you’ve tolerated so much more. It wasn’t all bad, sometimes just annoying, like losing my sock or slipper for the 14th time that day and having to search the house to find it because I had no idea how long it was gone or where I left it. I never left the house without shoes that were tied on.
It was around this time that I found a group of “weggies” on line in a support group that welcomed me to the place where no one wants to be. Happy to have found others who had been dealing with this illness from weeks to many years, it gave me appreciation for the experience I had. Not that it discounted my experience at all, but made me realize it could have been so much worse. Many of these survivors have had several years of what they refer to as quiet time for fear of using the word remission. Many have taken years of a multitude of medications to get to that quiet place. Only a few have nerve involvement, but I’m the one who understands how someone loses a shoe in a grocery store and has to retrace their steps looking for it. There are over a dozen others who sleep 10-12 hours a day or more even when they are in a quiet phase. This group has experience with doctors attitudes, demanding care, medications, ongoing research for treatment and cure, and life in general with WG. They are a wonderful addition to my family and friends.
The nerves have begun to either confuse or regenerate or both and cause an unending selection of strange and sudden pains in my feet. Among my favourites are the pen in my right shoe or the rock under my left heel. There is no getting away from it, I don’t have to be wearing shoes or even be on my feet for those things to demand my attention. A couple of medical professionals have told me that nerve pain is the most excruciating pain. Someone I knew who had been electrocuted and experienced severe nerve pain throughout his body told me one day that nerve pain is all in your head. I looked at him incredulously. If anyone should understand this pain I had, it would be him. It’s mind over matter he explained, you don’t really have pain as you know it, your nerves are just giving the wrong message to your brain. Tell it to your brain. It’s hard to imagine that it actually helped me to think of that at times when the pain shot through me or when I felt my feet were freezing but were warm to touch. In February, my nerve conduction test showed that I could have full recovery in my right foot in only 10 more months. My left is not yet registering on the computer because the response is so small but the neurologist advised that the nerve connection is still there thus making possible the eventual regeneration, likely much more than a year away. Convinced that the shooting pains mean normal feeling will come, the intense toe wiggling challenges continue along with the exercises to strengthen the very weak left ankle.
This story continues, however I’m not there yet. While this illness makes you continually look over your shoulder for the next flare, I still believe I can be one of the survivors to remain in remission for many years if not the rest of my life. Statistics show that most diagnosed Wegener’s patients eventually die of something else. I think choking on a peanut comes before WG in the likelihood lottery. Anyway, there are worse situations and the most important things in life are not things. You find out there is a lot of care out there, family, friends, and friends of friends you may not even have met and doctors too. It’s not just a job it’s a learning experience for the wonderful team taking care of me.
Although I fight this fight within myself, I’m not alone.
Karen / BC Canada / dx WG 07/2007