Saturday, December 31, 2011
Life With Aunt Marge: Life With Aunt Marge: Merry Christmas and a Health...
Life With Aunt Marge: Life With Aunt Marge: Merry Christmas and a Health...: Life With Aunt Marge: Merry Christmas and a Healthy New Year! : I read an article that said the holidays can be especially difficult for tho...
Merry Christmas and a Healthy New Year!
Wednesday, November 2, 2011
The 4 Types of MS and What's Your Boat?
I guess it's a good thing that I haven't thought about blogging lately. Maybe that means I am forgetting about myself a little bit more? Or, maybe I am so fatigued that I can only handle doing the essential tasks of the day? Either way, life is busy and it seems that having time to sit down and blog for 15 minutes is rare. I did promise to explain the four types of M.S. and so here it goes:
Relapsing-remitting MS
*This accounts for 85% of all MS diagnoses.
*Relapses are followed by remissions. People may recover at least partially from the relapses.
*Most people with this form of MS eventually develop secondary-progressive MS. (oh joy)
Secondary-progressive MS
*Irreversible disability accumulates gradually.
*Relapses or remissions are not clearly seperated.
Primary Progressive MS
*This accounts for 10% of all diagnoses.
*Symptoms gradually intensify over time without clear relapses or remissions.
*Conditions usually worsens continuously.
Progressive-relapsing MS
*This accounts for about 5% of all MS diagnoses.
*Relapses are often serious and usually have limited recovery
*MS continues to progress during periods between relapses.
Well, that's the simplest explanation I could find amongst all the information that comes in the mail, from the doctor's office, health insurance company, drug suppliers, web links, etc. There is an entire shelf in my bookcase loaded with pamphlets and books trying to make sense of it all. And most of it I never even asked for! Some patients eat up every bit of it. I think I did for the first few weeks. But now I feel like it is so unpredictable and so different for every person that there is nothing really to "figure out" except what medicine to take...and even that is somewhat of a guess because the medicine is preventative in nature and there is no real way of knowing how I would have faired without it. Research is proving it to be effective in slowing the progress and severity of relapsing-remitting MS in general, so, of course, I am giving it a "shot". Most likely, that is the type of MS I have and most likely I am going to benefit from it. 'Nuff said.
One thing that is really apparent since my diagnosis is that everyone has something. Not to be negative or discouraging but it makes me feel less sorry for myself, I guess. I am constantly hearing of cancers, diseases, addictions, accidents, and physical trials of every kind that people all around me are dealing with. It seems like we are all in the same boat (imperfect bodies) on the same ocean (imperfect world) but some have their sails up and are plowing through to a better land..a promised land..while others are anchored in their plight and even plundered by others who would take away their every hope. Some even seem to be throwing their treasures overboard so that they can cling to their misery. I feel like this new addition to my journey is truly a new "addition" not a subtraction. Of course, I have my down times when I would rather have it taken away. But truly, is it not the bigger waves that create the greatest surf experience..the greatest roll on the waters...the hardest and most effective push toward the other side? I'm riding this one out. I want to take all of you with me because everyone has SOMETHING...something to deal with and something to show for it...treasures of experience, perspective, compassion, courage, sacrifice, endurance, character...Don't throw them overboard! Let's help each other get to the other side.
Relapsing-remitting MS
*This accounts for 85% of all MS diagnoses.
*Relapses are followed by remissions. People may recover at least partially from the relapses.
*Most people with this form of MS eventually develop secondary-progressive MS. (oh joy)
Secondary-progressive MS
*Irreversible disability accumulates gradually.
*Relapses or remissions are not clearly seperated.
Primary Progressive MS
*This accounts for 10% of all diagnoses.
*Symptoms gradually intensify over time without clear relapses or remissions.
*Conditions usually worsens continuously.
Progressive-relapsing MS
*This accounts for about 5% of all MS diagnoses.
*Relapses are often serious and usually have limited recovery
*MS continues to progress during periods between relapses.
Well, that's the simplest explanation I could find amongst all the information that comes in the mail, from the doctor's office, health insurance company, drug suppliers, web links, etc. There is an entire shelf in my bookcase loaded with pamphlets and books trying to make sense of it all. And most of it I never even asked for! Some patients eat up every bit of it. I think I did for the first few weeks. But now I feel like it is so unpredictable and so different for every person that there is nothing really to "figure out" except what medicine to take...and even that is somewhat of a guess because the medicine is preventative in nature and there is no real way of knowing how I would have faired without it. Research is proving it to be effective in slowing the progress and severity of relapsing-remitting MS in general, so, of course, I am giving it a "shot". Most likely, that is the type of MS I have and most likely I am going to benefit from it. 'Nuff said.
One thing that is really apparent since my diagnosis is that everyone has something. Not to be negative or discouraging but it makes me feel less sorry for myself, I guess. I am constantly hearing of cancers, diseases, addictions, accidents, and physical trials of every kind that people all around me are dealing with. It seems like we are all in the same boat (imperfect bodies) on the same ocean (imperfect world) but some have their sails up and are plowing through to a better land..a promised land..while others are anchored in their plight and even plundered by others who would take away their every hope. Some even seem to be throwing their treasures overboard so that they can cling to their misery. I feel like this new addition to my journey is truly a new "addition" not a subtraction. Of course, I have my down times when I would rather have it taken away. But truly, is it not the bigger waves that create the greatest surf experience..the greatest roll on the waters...the hardest and most effective push toward the other side? I'm riding this one out. I want to take all of you with me because everyone has SOMETHING...something to deal with and something to show for it...treasures of experience, perspective, compassion, courage, sacrifice, endurance, character...Don't throw them overboard! Let's help each other get to the other side.
Thursday, September 22, 2011
Getting to Know Aunt Marge-Lesson One
No one really knows for sure where Aunt Marge comes from or why. Is it hereditary? Well, there are over 30 genetic factors linked to it. My daughter, Jacqueline, recently caught a glimpse of the headlines on a London newspaper announcing the recent discovery of several more genetic links. Looking back through my family history, we know of at least three women with M.S. Strike One.
A person with these genetic factors would seem to be more likely to develop M.S., especially if they lived in the northwest part of the U.S. This is believed to be due to the lack of sunshine and therefore low vitamin D exposure before the age of 12. Records show that cases of M.S. are nearly non-existent as you get closer to the equator. I was raised in Banks, OR which is about 25 miles west of Portland...the land of grey skies. Strike Two.
Having another auto-immune disease, such as Celiac Disease, increases your chances of having M.S. Strike Three and please pass the rice cakes.
Multiple Sclerosis earns its name from the many scars that form as the body attacks its own myelin covered nerves. This causes pain, fatigue, numbness, spasms and a variety of other symptoms as the body fights harder to send messages from the Central Nervous System. As in real estate, my doctor says that it's a matter of "location, location, location." A lesion or scar in one area of the brain may cause more cognitive impairment versus a lesion on the lower spinal cord which may cause leg spasms or even immobility. Because of this, no two patients with M.S. will be alike. One of the most common areas of attack is the optic nerve which results in blurred, double and even lack of vision. This can come and go like most symptoms of M.S. You may not know how you will feel from one hour to the next which makes life quite an adventure. Many symptoms are triggered by heat. The doctor recommended that I purchase a cooling vest to wear outside this summer. Maybe next year. And maybe I will have to bedazzle it. It's very "subtractive", as we say in our home.
Coming soon to a computer near you: Lesson Two...The Many Faces of Aunt Marge..including the ones you can't see.
A person with these genetic factors would seem to be more likely to develop M.S., especially if they lived in the northwest part of the U.S. This is believed to be due to the lack of sunshine and therefore low vitamin D exposure before the age of 12. Records show that cases of M.S. are nearly non-existent as you get closer to the equator. I was raised in Banks, OR which is about 25 miles west of Portland...the land of grey skies. Strike Two.
Having another auto-immune disease, such as Celiac Disease, increases your chances of having M.S. Strike Three and please pass the rice cakes.
Multiple Sclerosis earns its name from the many scars that form as the body attacks its own myelin covered nerves. This causes pain, fatigue, numbness, spasms and a variety of other symptoms as the body fights harder to send messages from the Central Nervous System. As in real estate, my doctor says that it's a matter of "location, location, location." A lesion or scar in one area of the brain may cause more cognitive impairment versus a lesion on the lower spinal cord which may cause leg spasms or even immobility. Because of this, no two patients with M.S. will be alike. One of the most common areas of attack is the optic nerve which results in blurred, double and even lack of vision. This can come and go like most symptoms of M.S. You may not know how you will feel from one hour to the next which makes life quite an adventure. Many symptoms are triggered by heat. The doctor recommended that I purchase a cooling vest to wear outside this summer. Maybe next year. And maybe I will have to bedazzle it. It's very "subtractive", as we say in our home.
Coming soon to a computer near you: Lesson Two...The Many Faces of Aunt Marge..including the ones you can't see.
Thursday, September 1, 2011
Never Go to Bed Angry
They say there is power in positive thinking. I believe that. I also believe that there is power in accepting reality and the possibilities therein. There is no question that life WILL be unpredictable and challenging. It's not a matter of IF it's a matter of WHEN and HOW. Many times WHY doesn't even fit into the equation. It just IS. We live in an imperfect world. But, thankfully, we have a perfect God who can use each day and situation for good.
A few days after my diagnosis, unaware of the news traveling outside my family, I walked into an evening activity at the school. Though my mind (and legs) seemed to be in a fog, I stepped carefully and confidently through the crowd. A friend suddenly stood facing me. She grabbed both of my shoulders and scanned my eyes with her own, looking deeply, searching for something. She said, "Colleen, I'm so sorry. Are you ok? Are you angry?" That last word hung awkwardly in the air. I felt my mind studying it. What was it even doing there? I couldn't make sense of it. Who was I supposed to be angry at? Anger usually stems from fear. Well, I can't deny that I struggle with that here and there. But, it is also related to frustration. Frustration comes with unmet expectation. What did I expect from this life? The moment I was born, I cried because I didn't get what I wanted when I wanted it. I laugh because life is so surprising, strange, punny and ironic. I wonder and kneel because life can be so much more. Expectation. You can't live in it...you can't live outside of it. I wouldn't say that I'm "angry".
Honestly, I try to fight thoughts of living in a wheelchair. That might not be the hand I'm dealt. But, it might be. So, what? My shoes won't wear out so fast. And I am going to buy amazing shoes. I might even bedazzle them. I might wear six inch heels..just because that's the only way I can. I might drape a new and beautiful tapestry across the back of my seat every day. Or, I might walk with a cane. No, an old fashioned umbrella with ruffles along the edges. No, a walking stick carved by one of my husband's Cherokee ancestors. This is the fun I try to have with my thoughts. I'm not saying it always happens this way. Other times, when I am just too tired, I let myself think about all the stairs in my house, all the times I have to get in and out of the car every day, how expensive it would be to get an electric lift installed in our pool, the laundry....o.k. that COULD get really frustrating. Maybe I will get angry.
I try to accept that even IF...my life will still be what it has always been...a beautiful disaster. I love that phrase. It reminds my of my daughter's 4th grade science experiment. We learned how light reflects, seperates and bends through the rain. My life has this light that shines down through my storms, my brokenness and then it divides into all these surprising colors and leaves an awesome arch over the whole thing. And at the end, there is not a pot of gold, but a street of gold that stretches on forever...and I can WALK on it.
A few days after my diagnosis, unaware of the news traveling outside my family, I walked into an evening activity at the school. Though my mind (and legs) seemed to be in a fog, I stepped carefully and confidently through the crowd. A friend suddenly stood facing me. She grabbed both of my shoulders and scanned my eyes with her own, looking deeply, searching for something. She said, "Colleen, I'm so sorry. Are you ok? Are you angry?" That last word hung awkwardly in the air. I felt my mind studying it. What was it even doing there? I couldn't make sense of it. Who was I supposed to be angry at? Anger usually stems from fear. Well, I can't deny that I struggle with that here and there. But, it is also related to frustration. Frustration comes with unmet expectation. What did I expect from this life? The moment I was born, I cried because I didn't get what I wanted when I wanted it. I laugh because life is so surprising, strange, punny and ironic. I wonder and kneel because life can be so much more. Expectation. You can't live in it...you can't live outside of it. I wouldn't say that I'm "angry".
Honestly, I try to fight thoughts of living in a wheelchair. That might not be the hand I'm dealt. But, it might be. So, what? My shoes won't wear out so fast. And I am going to buy amazing shoes. I might even bedazzle them. I might wear six inch heels..just because that's the only way I can. I might drape a new and beautiful tapestry across the back of my seat every day. Or, I might walk with a cane. No, an old fashioned umbrella with ruffles along the edges. No, a walking stick carved by one of my husband's Cherokee ancestors. This is the fun I try to have with my thoughts. I'm not saying it always happens this way. Other times, when I am just too tired, I let myself think about all the stairs in my house, all the times I have to get in and out of the car every day, how expensive it would be to get an electric lift installed in our pool, the laundry....o.k. that COULD get really frustrating. Maybe I will get angry.
I try to accept that even IF...my life will still be what it has always been...a beautiful disaster. I love that phrase. It reminds my of my daughter's 4th grade science experiment. We learned how light reflects, seperates and bends through the rain. My life has this light that shines down through my storms, my brokenness and then it divides into all these surprising colors and leaves an awesome arch over the whole thing. And at the end, there is not a pot of gold, but a street of gold that stretches on forever...and I can WALK on it.
Sunday, August 28, 2011
The Diagnosis in Cursive
When the doctor's assistant called to schedule the follow-up to my spinal tap, I knew that she knew. Her positive tone actually made me suspicious. My mother and husband both wanted to go to the appointment with me. I knew that my mom really wanted to be there to support me and I hated to have Jack miss another day of work. I also felt that by not having Jack go, I was proving that I was hoping for the best.
The doctor came in and sat across from me at a close, yet comfortable distance for a nice long chat. My mom sat to my right with pen and paper propped up on her purse to take notes. My chart was opened and she proceeded to tell me that my tests for cancers and then bla, bla, bla (it's all a blur)...came back "negative". It all looked good...."BUT"...(a Pee-Wee Herman quote came to my mind for comic relief)...I did test positive for M.S. I don't remember the doctor's exact words. All I can remember is that on a small folded piece of scratch paper, my mom wrote, "does have M.S." That's the one thing I remember most from that day. When I close my eyes, I can still see her cursive hand-writing across the page. My heart sank for just a brief moment but strangely lifted at the realization that I was not really just going crazy. I resolved to soak up all the information that the doctor was trying to impart. In an effort to avoid overwhelming me with too much, she pulled a book down from her shelf, M.S. for Dummies. I chuckled at the thought that maybe there was a copy of M.S. for Smarties in her collection but she chose the former. We sat and talked for a few more minutes, my mother taking careful notes. The doctor allowed a few weeks until my next appointment so that I could consider my treatment options. Which meant: shot A, shot B, shot C, shot D, shot E or shot F. Some had risks, some were inter-muscular, some were steroids, some once a day, others once a week or month, etc. But none were a cure.
All I wanted to do was get to Jack. We drove just a block across the street to his office where I immediately met him in the hallway. I told him the news without any show of emotion because I knew that he would feel bad about not being there with me during the appointment and even worse that he still had a whole day of work ahead. I told him that we could talk later, enjoyed a long hug, and went home. Fifteen minutes later, he walked through the door.
The doctor came in and sat across from me at a close, yet comfortable distance for a nice long chat. My mom sat to my right with pen and paper propped up on her purse to take notes. My chart was opened and she proceeded to tell me that my tests for cancers and then bla, bla, bla (it's all a blur)...came back "negative". It all looked good...."BUT"...(a Pee-Wee Herman quote came to my mind for comic relief)...I did test positive for M.S. I don't remember the doctor's exact words. All I can remember is that on a small folded piece of scratch paper, my mom wrote, "does have M.S." That's the one thing I remember most from that day. When I close my eyes, I can still see her cursive hand-writing across the page. My heart sank for just a brief moment but strangely lifted at the realization that I was not really just going crazy. I resolved to soak up all the information that the doctor was trying to impart. In an effort to avoid overwhelming me with too much, she pulled a book down from her shelf, M.S. for Dummies. I chuckled at the thought that maybe there was a copy of M.S. for Smarties in her collection but she chose the former. We sat and talked for a few more minutes, my mother taking careful notes. The doctor allowed a few weeks until my next appointment so that I could consider my treatment options. Which meant: shot A, shot B, shot C, shot D, shot E or shot F. Some had risks, some were inter-muscular, some were steroids, some once a day, others once a week or month, etc. But none were a cure.
All I wanted to do was get to Jack. We drove just a block across the street to his office where I immediately met him in the hallway. I told him the news without any show of emotion because I knew that he would feel bad about not being there with me during the appointment and even worse that he still had a whole day of work ahead. I told him that we could talk later, enjoyed a long hug, and went home. Fifteen minutes later, he walked through the door.
Wednesday, August 24, 2011
The Waiting Room
A doctor's waiting room is like a microcosm of life. There are people who will make the most of their "pause" by editing their day planners, making a grocery list, or even cleaning out their purse (my personal favorite). A more relaxed person may casually flip through the magazines while taking note of good recipes or beauty tips, people watch, or phone a friend. There are even those who foresee and even hope for this waiting and bring along a book or laptop. On the other hand, there are those who, maybe due to the reason for their visit, are so nervous that all they can do is sit and focus on the waiting.
Sometimes I think that life is about how we live in the waiting. I suppose in the widest scope, one could just be waiting til their end. But in many ways, we wait. We wait for birthdays, holidays, to drive, find jobs, buy a home, get a report card,....get a diagnosis. I wonder what an outsider would have observed about me during my waiting? Could I be considered a person with faith even though I followed through with occasional impulses to research every positive outcome? Or was I just being a responsible, educated patient? Was it ok that I sometimes looked for blogs and comments of people with M.S...looking for clues, allowing my emotions to ride up and down? I can't decide if I spent my waiting time productively or psychotically- but, regardless- a month seemed like an eternity. Thankfully, in eternity, there will be no more waiting.
Sometimes I think that life is about how we live in the waiting. I suppose in the widest scope, one could just be waiting til their end. But in many ways, we wait. We wait for birthdays, holidays, to drive, find jobs, buy a home, get a report card,....get a diagnosis. I wonder what an outsider would have observed about me during my waiting? Could I be considered a person with faith even though I followed through with occasional impulses to research every positive outcome? Or was I just being a responsible, educated patient? Was it ok that I sometimes looked for blogs and comments of people with M.S...looking for clues, allowing my emotions to ride up and down? I can't decide if I spent my waiting time productively or psychotically- but, regardless- a month seemed like an eternity. Thankfully, in eternity, there will be no more waiting.
Wednesday, July 20, 2011
Life With Aunt Marge: Misfire at the Airport
Life With Aunt Marge: Misfire at the Airport: "I was thankful to get through airport security with my 12 pre-filled glass syringes. Copaxone. I was well prepared for any trouble. I had t..."
Life With Aunt Marge: Hindsight is 20/20
Life With Aunt Marge: Hindsight is 20/20: "For reasons we thought we understood (simplifying our life, getting out of debt, being closer to town, escaping allergens..etc.) we decided ..."
Life With Aunt Marge: Mercies in Disguise
Life With Aunt Marge: Mercies in Disguise: "http://www.youtube.com/watch?v=1CSVqHcdhXQ&feature=player_detailpage It made sense that my vitamin B levels could be low due to poor absor..."
Life With Aunt Marge: The Tests
Life With Aunt Marge: The Tests: "The doctor was very easy to talk to and didn't make me feel like I was crazy when I told her my various strange symptoms. She performed a b..."
Monday, July 18, 2011
The Tests
The doctor was very easy to talk to and didn't make me feel like I was crazy when I told her my various strange symptoms. She performed a brief physical exam, testing reflexes and such. She noted that one side of my body was reflexing a little differently than the other. Other than that, all seemed well. With that small clue along with the symptoms I shared, she decided to order an M.R.I. A few days later, I was heading through the white tunnel hoping I could make it through an hour and a half of imaging without using the bathroom and without twitching from the muscle spasms. I actually felt amazing during the test. My body felt so relaxed that I even had the crazy thought that maybe God was healing me at that very moment. I expected the test results to come back normal. As I was leaving the M.R.I. room, the technician who had gone into the small computer room to see if the images were clear, came in and asked me how long I had been having my symptoms. "Why are you asking me this?" I thought to myself. "Did you see something?" It didn't really matter if she had because she wouldn't have been able to tell me. Then, as I left the room to get dressed, the man who had been watching the computers during the whole test came out of the room and said, "Good luck to you, miss." The same questions haunted my mind. Were they just making small talk, being polite? I went from wondering if I was healed to wondering if I had a massive tumor on my spinal cord.
I was grateful that the doctor had squeezed me in on her lunch hour to give me the results the next day. "Inconclusive", was her conclusion. There were several white spots on my brain indicating lesions. These lesions could have been there for many years as a result of migraines or they could be lesions caused by multiple sclerosis that were located in areas that were not considered "classic" to the disease. No spots on the spinal cord or brain stem. That was a good thing. No tumors. A great thing! She gave me two choices. One, I could have a spinal tap that would give an immediate answer as to whether or not I had m.s. with a 95% accuracy. Two, I could wait six months to see if I had new symptoms and possibly order another M.R.I. The problem with number one is that spinal taps can be very uncomfortable. The problem with number two is that if I did have m.s. and didn't get medicated right away, I could have another attack. Each attack is usually different...maybe more severe. The damage from those attacks cannot be reversed. What if in the next six months I had an attack that damaged the nerves to my legs? The doctor assured me that the likelihood was slim, but there are no guarantees. I decided to think about it.
Within a week or so, my symptoms started to escalate. Each time this happened, I would worry about the long term damage that could be happening inside my body. Deep down inside, I knew I needed to just have the spinal tap done, but I was scared. My doctor reassured me that she had only had two patients with spinal tap complications within the last five years. For some reason, I felt like I would be the third. I battled back and forth with the idea. I called my friend, the doctor, and discussed it with him. I called my aunt. Everyone seemed to think it would be best for me to just have the answer I needed...just so I could have peace of mind, rule it out, etc. The spinal tap would go fine. Statistically, that was true. But, statistically, I shouldn't have celiac disease. I shouldn't have m.s..
After a bad night of numbness and spasms, I finally decided to bite the bullet. I opted to have the procedure done in my doctor's office rather than by a radiologist in the hospital. She is a very capable doctor and she assured me that I was thin enough that it wouldn't be difficult to find just the right space to insert the needle to draw the spinal fluid. And, it was thousands of dollars cheaper. Jack went with me. I bent forward, hugging my knees while he sat facing me, hugging all of me. It hurt, I won't lie. The doctor said she hit some scar tissue and needed to move to another spot and try again. I didn't doubt it. I have been having chronic back pain for years. At one point, the fluid stopped flowing and she was afraid she wouldn't be able to collect enough for all the tests she wanted to order. Thankfully, the flow picked up again and it was over in a few minutes. My legs both went numb. She said that was normal because of the adrenaline. In my mind I thought, "No, it's because I DO have m.s., dangit!" But, I always had that battle of faith and fear going on in my head. And it would continue for a few more weeks while I waited for results.
The doctor warned me that a slight percentage of people would get a bad headache from the spinal tap. I was to lay flat for a day or two in order to avoid this. I thought I followed the orders quite well. But still, I became the exception to the rule. I took pain killers and hoped that things would get better. They only got worse. Every time I lifted my head, I felt it would explode. The pain was unimaginable. I called the doctor's office and was instructed to meet a radiologist at the hospital who would perform a procedure similar to the spinal tap where he would collect some of my own blood and insert it into my spinal cord (with another long needle) and patch up the hole that was causing my spinal fluid to leak out. This was called a "blood patch" and it didn't sound fun at all! I declined. Maybe I just needed to lay flat longer. Nope. It didn't help. The next day my mother came to stay with me while the kids were at school. Now, every time I lifted my head, I started to vomit. I called my doctor friend. I wanted him to tell me that it would go away. But instead he told me the blood patch HAD to be done. It would give me immediate relief. It was the only solution. So, a special radiologist was called into the hospital. In a few hours, I was on my way. I staggered down the walkway outside of our front door bent over with my head down. I only made it a few steps before collapsing on the front lawn to throw up. My mom grabbed a plastic bowl and helped me to the car. Luckily, we now live just a few blocks from the hospital. I couldn't believe how long I had to sit in the waiting room. I found a couch and laid down, praying that I wouldn't throw up in front of everybody.
Finally, I was whisked down the hall to an x-ray room. I lay on the table, curled up on my side. The radiologist was amazing. He gently described the procedure to me and walked me through the whole thing with his soothing voice and mannerisms. The nurse had to call in her supervisor because she was having a hard time drawing my blood. When my blood was finally pulsing through the tubes, the radiologist was able to get started. The imaging machine helped him to locate the spinal fluid leak and the blood was slowly inserted. He told me to let him know when I started to feel pressure. That would mean that the hole was "plugged". Even though it was uncomfortable, I actually waited a few seconds after that sensation...thinking that would guarantee that it was very, very "plugged". He was curious why it had taken so much blood. I didn't confess. The radiologist was like a miracle worker! Immediately, I was able to sit up and walk upright down the hall to the recovery room. I waited an hour and went home.
Yep, I beat the odds...I was my doctor's third person.
I was grateful that the doctor had squeezed me in on her lunch hour to give me the results the next day. "Inconclusive", was her conclusion. There were several white spots on my brain indicating lesions. These lesions could have been there for many years as a result of migraines or they could be lesions caused by multiple sclerosis that were located in areas that were not considered "classic" to the disease. No spots on the spinal cord or brain stem. That was a good thing. No tumors. A great thing! She gave me two choices. One, I could have a spinal tap that would give an immediate answer as to whether or not I had m.s. with a 95% accuracy. Two, I could wait six months to see if I had new symptoms and possibly order another M.R.I. The problem with number one is that spinal taps can be very uncomfortable. The problem with number two is that if I did have m.s. and didn't get medicated right away, I could have another attack. Each attack is usually different...maybe more severe. The damage from those attacks cannot be reversed. What if in the next six months I had an attack that damaged the nerves to my legs? The doctor assured me that the likelihood was slim, but there are no guarantees. I decided to think about it.
Within a week or so, my symptoms started to escalate. Each time this happened, I would worry about the long term damage that could be happening inside my body. Deep down inside, I knew I needed to just have the spinal tap done, but I was scared. My doctor reassured me that she had only had two patients with spinal tap complications within the last five years. For some reason, I felt like I would be the third. I battled back and forth with the idea. I called my friend, the doctor, and discussed it with him. I called my aunt. Everyone seemed to think it would be best for me to just have the answer I needed...just so I could have peace of mind, rule it out, etc. The spinal tap would go fine. Statistically, that was true. But, statistically, I shouldn't have celiac disease. I shouldn't have m.s..
After a bad night of numbness and spasms, I finally decided to bite the bullet. I opted to have the procedure done in my doctor's office rather than by a radiologist in the hospital. She is a very capable doctor and she assured me that I was thin enough that it wouldn't be difficult to find just the right space to insert the needle to draw the spinal fluid. And, it was thousands of dollars cheaper. Jack went with me. I bent forward, hugging my knees while he sat facing me, hugging all of me. It hurt, I won't lie. The doctor said she hit some scar tissue and needed to move to another spot and try again. I didn't doubt it. I have been having chronic back pain for years. At one point, the fluid stopped flowing and she was afraid she wouldn't be able to collect enough for all the tests she wanted to order. Thankfully, the flow picked up again and it was over in a few minutes. My legs both went numb. She said that was normal because of the adrenaline. In my mind I thought, "No, it's because I DO have m.s., dangit!" But, I always had that battle of faith and fear going on in my head. And it would continue for a few more weeks while I waited for results.
The doctor warned me that a slight percentage of people would get a bad headache from the spinal tap. I was to lay flat for a day or two in order to avoid this. I thought I followed the orders quite well. But still, I became the exception to the rule. I took pain killers and hoped that things would get better. They only got worse. Every time I lifted my head, I felt it would explode. The pain was unimaginable. I called the doctor's office and was instructed to meet a radiologist at the hospital who would perform a procedure similar to the spinal tap where he would collect some of my own blood and insert it into my spinal cord (with another long needle) and patch up the hole that was causing my spinal fluid to leak out. This was called a "blood patch" and it didn't sound fun at all! I declined. Maybe I just needed to lay flat longer. Nope. It didn't help. The next day my mother came to stay with me while the kids were at school. Now, every time I lifted my head, I started to vomit. I called my doctor friend. I wanted him to tell me that it would go away. But instead he told me the blood patch HAD to be done. It would give me immediate relief. It was the only solution. So, a special radiologist was called into the hospital. In a few hours, I was on my way. I staggered down the walkway outside of our front door bent over with my head down. I only made it a few steps before collapsing on the front lawn to throw up. My mom grabbed a plastic bowl and helped me to the car. Luckily, we now live just a few blocks from the hospital. I couldn't believe how long I had to sit in the waiting room. I found a couch and laid down, praying that I wouldn't throw up in front of everybody.
Finally, I was whisked down the hall to an x-ray room. I lay on the table, curled up on my side. The radiologist was amazing. He gently described the procedure to me and walked me through the whole thing with his soothing voice and mannerisms. The nurse had to call in her supervisor because she was having a hard time drawing my blood. When my blood was finally pulsing through the tubes, the radiologist was able to get started. The imaging machine helped him to locate the spinal fluid leak and the blood was slowly inserted. He told me to let him know when I started to feel pressure. That would mean that the hole was "plugged". Even though it was uncomfortable, I actually waited a few seconds after that sensation...thinking that would guarantee that it was very, very "plugged". He was curious why it had taken so much blood. I didn't confess. The radiologist was like a miracle worker! Immediately, I was able to sit up and walk upright down the hall to the recovery room. I waited an hour and went home.
Yep, I beat the odds...I was my doctor's third person.
Thursday, July 14, 2011
Mercies in Disguise
http://www.youtube.com/watch?v=1CSVqHcdhXQ&feature=player_detailpage
It made sense that my vitamin B levels could be low due to poor absorption caused by celiac. But, the blood work came back normal and I was referred to a neurologist. He was a very reputable doctor and I was thankful to know him personally. Unfortunately, with his success comes a very full schedule. Waiting for my appointment was driving me crazy. I contacted my aunt who also has m.s. She was a great encouragement to me and we both felt like it must be something else. I started researching the possibilities. The day that I was learning about Lou Gehrig's disease, the muscles in my left arm started twitching. I could see it happening. "Oh God, not that!", I thought. My hands were falling asleep every night. And then, my legs. Each new symptom became my new research project and added to my anxiety. I was trying to be patient about my appointment. Jack suggested that we call our friend, the doctor, and just see if we could get in any earlier. I refused to play the "friend" card and ask for special privileges. I simply called the front desk and asked to be put on a waiting list to fill any cancellations that may arise. And then I prayed. And Jack knelt beside me and prayed.
The next morning, after suffering a sleepless night, I went to drop off my daughter at school. And who should pull up to the school curb in front of me? The doctor. In the few years that our children have attended the same school, I have never run into him while dropping off my daughter. I wanted to jump out of my car and tell him everything. But, I was in my pajamas. Yet, this was a God moment, so, of course, after his kids ran towards the school, he got out of his car and came to me. He was getting ready to go out of town and was going out to breakfast with his wife after dropping off the kids.
He didn't know that I had made an appointment but the look on my face told him that something was wrong. When I told him about the hot shower incident, he became more concerned. He was heading out of town for the weekend but said he would talk to his secretary about getting me in on Monday if possible. He drove away but within a few minutes he called to tell me that he would like me to see one of his partners who specializes in....m.s. And she could see me the next day. Don't tell me this was all a coincidence.
It made sense that my vitamin B levels could be low due to poor absorption caused by celiac. But, the blood work came back normal and I was referred to a neurologist. He was a very reputable doctor and I was thankful to know him personally. Unfortunately, with his success comes a very full schedule. Waiting for my appointment was driving me crazy. I contacted my aunt who also has m.s. She was a great encouragement to me and we both felt like it must be something else. I started researching the possibilities. The day that I was learning about Lou Gehrig's disease, the muscles in my left arm started twitching. I could see it happening. "Oh God, not that!", I thought. My hands were falling asleep every night. And then, my legs. Each new symptom became my new research project and added to my anxiety. I was trying to be patient about my appointment. Jack suggested that we call our friend, the doctor, and just see if we could get in any earlier. I refused to play the "friend" card and ask for special privileges. I simply called the front desk and asked to be put on a waiting list to fill any cancellations that may arise. And then I prayed. And Jack knelt beside me and prayed.
The next morning, after suffering a sleepless night, I went to drop off my daughter at school. And who should pull up to the school curb in front of me? The doctor. In the few years that our children have attended the same school, I have never run into him while dropping off my daughter. I wanted to jump out of my car and tell him everything. But, I was in my pajamas. Yet, this was a God moment, so, of course, after his kids ran towards the school, he got out of his car and came to me. He was getting ready to go out of town and was going out to breakfast with his wife after dropping off the kids.
He didn't know that I had made an appointment but the look on my face told him that something was wrong. When I told him about the hot shower incident, he became more concerned. He was heading out of town for the weekend but said he would talk to his secretary about getting me in on Monday if possible. He drove away but within a few minutes he called to tell me that he would like me to see one of his partners who specializes in....m.s. And she could see me the next day. Don't tell me this was all a coincidence.
Tuesday, July 12, 2011
Hindsight is 20/20
For reasons we thought we understood (simplifying our life, getting out of debt, being closer to town, escaping allergens..etc.) we decided to sell our country home on 32 acres last Spring. It was very difficult for me to say "good-bye" to the open spaces, mountain views, country porch, quiet star-filled nights. I loved watching my children grow up in the pure beauty of it all. It was hard for all of us, but something Jack and I felt we needed to do. Within a few weeks, our home was sold for cash. In our down economy, we considered this a miraculous confirmation from God. So, with the time capsule buried under the chicken coop and the wooden mountain scene ripped from the built in window bed, we packed everything into storage and awaited our fate.
For three months, the six of us lived in my grandmother's 800 sq ft home near downtown. It turned out to be one of our best summers yet. The kids and I loved being able to walk to the library, tea house, river, parks and other nearby attractions. Our 13 year old farm dog learned how to go for a walk. My daughter even pursued her dream of having a dog-walking business. One client, but it was a start. Other dreams that were longed for in our country days came true...a lemonade stand, a garage sale, a neighbor. Yes, our cozy cottage became our diamond in the rough. Knowing that it was only temporary insanity helped.
We had decided that it would be smartest to rent a home within our children's school boundaries while we took our time looking for just the right fit. But with the few rental options we could find, we were required to sign a year lease. Every home on the real estate market within our budget had either a very small yard or a very big need for remodel. It was in the midst of great frustration that Jack called on his lunch hour to tell me that he had stumbled upon our home.
It was a bank-owned home and the transaction happened in a blur of excitement. I never dreamed I would own a home with an indoor pool for half the price of our country home. I never dreamed that we would be a few blocks from my husband's office in town yet look out onto several acres including cows and horses beyond our back fence. Even better, they belonged to the neighbors, so we didn't have to take care of them! I never dreamed that when we moved, our home could still be large and unique enough to be the perfect hang out for lots of kids. Yet, it seemed that God was gracious to us beyond measure in our desire to be debt free. Little did I know what was ahead. But He did.
About six months after we moved in, my hands started falling asleep in the middle of the night. Strange. Annoying. Probably carpal tunnel. I continued to be frustrated by the fact that even though I had gone gluten-free after my diagnosis of celiac disease two year prior, I was still extremely fatigued by 3:00pm. I tried to fight my fatigue with exercise. I had run my first marathon in 2009...my goal before I turned 40. But now three or four miles was about all I could take. I decided to use the elliptical so that if I got too tired, at least I would be home and not stuck down the street. After about 20 minutes, my feet would go numb and my legs would start to shake. Strange. Annoying. One day, after a hard kickboxing workout, my legs and arms fell asleep in the hot shower. I felt like I was going to pass out and I started crying uncontrollably. The kids were at school and Jack was at work. I made my way to the phone, called Jack and laid down on the floor and waited. What a blessing that his office is so close. Within an hour, I was driving the car to pick up my dog from the groomer. I apologized for being late, embarrassed by what I thought had been a panic attack of some kind.
With continued random numbness issues, I decided to call my doctor. She suggested we do some blood work to see if I was low on vitamin B. If that checked out ok, I was to make an appt. with a neurologist. Carpal tunnel, bla bla bla...or m.s. M.S.? Flashbacks of two people from my childhood came into my mind. My piano teacher: old, swollen feet, wheelchair bound, unable to play the piano but instructing me with her words...and then she died. My neighbor man: cared for by a live-in nurse, wheelchair bound, unable to feed himself, unable to talk. Ha! I doubt a silly episode in a hot shower could indicate something that severe. But, that was exactly what struck her interest. She wrote it down in her chart.
The good thing about the internet is that you can self-diagnose. The bad thing about the internet is that you can self-diagnose.
And now I am too tired to tell the rest of the story. Maybe tomorrow. Don't worry, hindsight is 20/20.
For three months, the six of us lived in my grandmother's 800 sq ft home near downtown. It turned out to be one of our best summers yet. The kids and I loved being able to walk to the library, tea house, river, parks and other nearby attractions. Our 13 year old farm dog learned how to go for a walk. My daughter even pursued her dream of having a dog-walking business. One client, but it was a start. Other dreams that were longed for in our country days came true...a lemonade stand, a garage sale, a neighbor. Yes, our cozy cottage became our diamond in the rough. Knowing that it was only temporary insanity helped.
We had decided that it would be smartest to rent a home within our children's school boundaries while we took our time looking for just the right fit. But with the few rental options we could find, we were required to sign a year lease. Every home on the real estate market within our budget had either a very small yard or a very big need for remodel. It was in the midst of great frustration that Jack called on his lunch hour to tell me that he had stumbled upon our home.
It was a bank-owned home and the transaction happened in a blur of excitement. I never dreamed I would own a home with an indoor pool for half the price of our country home. I never dreamed that we would be a few blocks from my husband's office in town yet look out onto several acres including cows and horses beyond our back fence. Even better, they belonged to the neighbors, so we didn't have to take care of them! I never dreamed that when we moved, our home could still be large and unique enough to be the perfect hang out for lots of kids. Yet, it seemed that God was gracious to us beyond measure in our desire to be debt free. Little did I know what was ahead. But He did.
About six months after we moved in, my hands started falling asleep in the middle of the night. Strange. Annoying. Probably carpal tunnel. I continued to be frustrated by the fact that even though I had gone gluten-free after my diagnosis of celiac disease two year prior, I was still extremely fatigued by 3:00pm. I tried to fight my fatigue with exercise. I had run my first marathon in 2009...my goal before I turned 40. But now three or four miles was about all I could take. I decided to use the elliptical so that if I got too tired, at least I would be home and not stuck down the street. After about 20 minutes, my feet would go numb and my legs would start to shake. Strange. Annoying. One day, after a hard kickboxing workout, my legs and arms fell asleep in the hot shower. I felt like I was going to pass out and I started crying uncontrollably. The kids were at school and Jack was at work. I made my way to the phone, called Jack and laid down on the floor and waited. What a blessing that his office is so close. Within an hour, I was driving the car to pick up my dog from the groomer. I apologized for being late, embarrassed by what I thought had been a panic attack of some kind.
With continued random numbness issues, I decided to call my doctor. She suggested we do some blood work to see if I was low on vitamin B. If that checked out ok, I was to make an appt. with a neurologist. Carpal tunnel, bla bla bla...or m.s. M.S.? Flashbacks of two people from my childhood came into my mind. My piano teacher: old, swollen feet, wheelchair bound, unable to play the piano but instructing me with her words...and then she died. My neighbor man: cared for by a live-in nurse, wheelchair bound, unable to feed himself, unable to talk. Ha! I doubt a silly episode in a hot shower could indicate something that severe. But, that was exactly what struck her interest. She wrote it down in her chart.
The good thing about the internet is that you can self-diagnose. The bad thing about the internet is that you can self-diagnose.
And now I am too tired to tell the rest of the story. Maybe tomorrow. Don't worry, hindsight is 20/20.
Sunday, July 10, 2011
Misfire at the Airport
I was thankful to get through airport security with my 12 pre-filled glass syringes. Copaxone. I was well prepared for any trouble. I had them stored in my carry-on in a special case with my prescription label and a note from my doctor. I decided not to warn the security guard of my contraband. Instead, I held my breath and quickly glanced over at the tech as it went through the x-ray. There wasn't even a pause, a flinch, a question or the dreaded interrogation. Maybe he wasn't paying attention. Maybe he didn't care. I almost felt hurt. I didn't even get to tell this complete stranger that I have this stupid disease that requires that I give myself injections every day. No glance, no hitch, no story to tell.
Our 6:30pm flight was delayed by three hours. I felt the pain and fatigue running down my legs as we paced the airport shops. My lovely assistant and youngest child, Leah, reminded me that I was due for my shot. In an effort to be a positive role model, I had to buck up and get 'er done without complaint. First, we went on a mission to create an ice pack. Leah came up with the great idea of asking for a food-handlers glove filled with ice at Wendy's. They handed me a to-go bag. That'll work. When we entered the bathroom, I was surprised to see a girl that I went to high school with over 20 years ago. Holding tight to my little blue case, I felt like I had a dark secret in my hands and yet part of me wanted to respond to her query, "How are you?" with.."Well, I just got diagnosed with M.S. and I am in here to give myself a shot. How 'bout those Lakers?" Instead, we enjoyed a short but sweet exchange and I waited for her to dry her hands and leave.
Leah was excited to discover that there is a sharps container on the wall in the airport bathrooms. Never noticed that before. We both crammed into a stall. I refused to use the larger one marked with a wheelchair..now..or ever. So, there we were, standing sideways in front of the toilet. We set my shot kit on top of the t.p. dispenser and went to work. I unsealed the syringe while Leah got the auto-injector ready. She pushed the plunger down. A method we call "Lock and Load". I couldn't remember which of the seven body areas we were scheduled to inject. I left my m.s. calendar at home. Leah was pretty sure we were on the right thigh. After loading the syringe, Leah accidentally hit the button on the injector and we had our third misfire in the last month. In an effort to defray the need to call the pharmacist to send a replacement syringe and all the red tape that requires, I grabbed the syringe which was still over half full out of the injector, pinched a large chunk of fat on my thigh with my left hand, closed my eyes, held my breath and stuck the needle into my leg...rouge style. It seemed like it took forever...but I did it. I had practiced on a foam pad without the auto injector in case of emergencies like this. But this was the first time I had actually done it on myself. I didn't pass out in the airport stall next to my ten year old daughter. Thank the Lord! In all the excitement, I dropped the glass syringe on the concrete floor and quickly snatched it up lest someone in the stall next to me thought I was a drug user. Well, technically, I am.
I held the ice bag to my leg as we continued to pace the airport. I looked like I had been shot. Well, technically, I had. And Leah was there with me through it all. She was disappointed that I had forgotten to use the sharps container and had thrown the syringe in the trash. Oops, Aunt Marge strikes again.
Our 6:30pm flight was delayed by three hours. I felt the pain and fatigue running down my legs as we paced the airport shops. My lovely assistant and youngest child, Leah, reminded me that I was due for my shot. In an effort to be a positive role model, I had to buck up and get 'er done without complaint. First, we went on a mission to create an ice pack. Leah came up with the great idea of asking for a food-handlers glove filled with ice at Wendy's. They handed me a to-go bag. That'll work. When we entered the bathroom, I was surprised to see a girl that I went to high school with over 20 years ago. Holding tight to my little blue case, I felt like I had a dark secret in my hands and yet part of me wanted to respond to her query, "How are you?" with.."Well, I just got diagnosed with M.S. and I am in here to give myself a shot. How 'bout those Lakers?" Instead, we enjoyed a short but sweet exchange and I waited for her to dry her hands and leave.
Leah was excited to discover that there is a sharps container on the wall in the airport bathrooms. Never noticed that before. We both crammed into a stall. I refused to use the larger one marked with a wheelchair..now..or ever. So, there we were, standing sideways in front of the toilet. We set my shot kit on top of the t.p. dispenser and went to work. I unsealed the syringe while Leah got the auto-injector ready. She pushed the plunger down. A method we call "Lock and Load". I couldn't remember which of the seven body areas we were scheduled to inject. I left my m.s. calendar at home. Leah was pretty sure we were on the right thigh. After loading the syringe, Leah accidentally hit the button on the injector and we had our third misfire in the last month. In an effort to defray the need to call the pharmacist to send a replacement syringe and all the red tape that requires, I grabbed the syringe which was still over half full out of the injector, pinched a large chunk of fat on my thigh with my left hand, closed my eyes, held my breath and stuck the needle into my leg...rouge style. It seemed like it took forever...but I did it. I had practiced on a foam pad without the auto injector in case of emergencies like this. But this was the first time I had actually done it on myself. I didn't pass out in the airport stall next to my ten year old daughter. Thank the Lord! In all the excitement, I dropped the glass syringe on the concrete floor and quickly snatched it up lest someone in the stall next to me thought I was a drug user. Well, technically, I am.
I held the ice bag to my leg as we continued to pace the airport. I looked like I had been shot. Well, technically, I had. And Leah was there with me through it all. She was disappointed that I had forgotten to use the sharps container and had thrown the syringe in the trash. Oops, Aunt Marge strikes again.
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