I am a champion faller
it is amazing that, given the multiple times that I fall down, I have never broken anything. I'm not really sure how I do it, but I think it has something to do with just going with the fall and not trying to stop myself . Plus a lot of times, I catch myself with the back of my hands instead of with my palms. I uually fall because I've tripped over something I didn't see or because my feet drag.
One of the first times I fell was pretty early into my diagnosis. I was working downtown Chicago across from the Greyhound station. It used to be a pretty shady area although now it is all gentrified and my old building is a condo. But I digress. I had work late seeing clients, and was walking to my car. The parking lot was across the street and under an overpass. I always tried to stand up straight and walk confidently so as to not look like a potential strike for a mugger. (I had been the victim of an attempted mugging in front of that office building in the past, so it wasn't outside of the realm of possibility. I'll tell you that story some other time . It's a doozy!).
Crossing the street in front of our building was always a crapshoot. At nighttime people tend to use that street, which was a major thoroughfare, as a speedway. I had just reached the curb, when I noticed a lone figure emerging from the shadows of the underpass. I straightened up and widened my stride to look confident, but instead dragged my foot and noticed that the pavement was coming closer. So instead of appearing confident and self-assured, I appeared injured. I managed to rip my dress and skin my knee and the shady character rushed over and said "Are you okay, Miss?" Never judge a book...
It was one of my first falls, but there have been many since then.
I can't tell you how many times I have fallen in front of clients which is horrendously embarrassing. Once I fell in front of a bunch of kids I was doing a group with. I tripped over my own feet, landed on my back,legs in the air and I was wearing a skirt! The kids just sort of stared at me wide-eyed. Kids are generally more worried about their own safety than whther or not you are okay. So they just needed to be reassured that I was fine and would continue to be able to take care of them.
Another time I fell in my back was again on that same street. This time I had really overdone cleaning up or something and was waling all hunched over. When I get fatigued, sometimes it is hard for me to straighten up and I walk like an old lady with osteoporosis...
I was trying to rush across the street and fell and landed on my back with my feet in the air. And of course I was wearing a skirt again. It's really hard for me to get up without something to lean on and there is not much to lean on in the middle of the street. So I was just trying to crawl out of there so I wouldn't get hit by a car. People are much more kind and willing to help than you would think down there by the Greyhound station. Several people came running into the street and helped me get up and walk across the rest of the way. And they didn't even comment on my beautiful underwear.
There are so many great falling stories, like the one where I fell down and caught myself with my face on one of those doormats with little concentric circles. I had concentric circles printed on my face at least a week.
But my all-time favorite is when I fell down in front of my son's day care center. Within the 2 yards fom my car to the entrance of the day care center, I managed to trip, hit my face on the asphalt and scream out, "Shit" at the top of my lungs. Eli yelled "I didn't do it!" The teachers came running out and helped me up. They asked me if I wanted them to call my husband to come and take care of me. They obviously didn't know me very well. Usually I'm not badly hurt physically apart from scrapes and bruises, but my dignity is always bruised pretty badly. And I don't need to call someone to come and take care of me!
I told me neurologist that I was going to write some stories about falling and he said " Please just don't mention my name if you do" but since he moved to Galena and is no longer my neurologist, I have no qualms about dedicated me stories to Dr. Jules Kovaleski. Thanks Dr. K.
Friday, November 30, 2012
Thursday, November 29, 2012
Prednisone
Predisone
I can't believe it! When I was talking about medication yesterday I forgot to include prednisone. Oh, those fabulous steroids. Prednisone is one of those drugs that you definitely can have a love-hate relationship with. The treatment of choice for an MS exacerbation is the steroid medications. Steroids work by reducing inflammation and since MS symptoms are caused by multiple inflammations in the brain, they can be alleviated by reducing inflammation. They really do work, and reduce the symptoms for a time, but they cause a lot of other crap to happen to you, too.
I know that there are very many people who have had steroid treatment for one reason or the other. But the steroid treatment used for an exacerbation of MS is beyond any that most people will have to experience.
After my first exacerbation, the treatment was receiving an infusion of something called Solu Medrol. I can't remember how long the treatment lasted by think it was maybe up to two or three weeks. That would require going every day and sitting in a chair and getting about a boatload of that stuff. pumped into me!. After you get the Solu Medrol, the prednisone treatment starts. Steroids are one of those medications that you can't just quit cold turkey because it would really increase your chances of getting getting sick. And I think even can shut the system down or something like that. Anyway I know it's dangerous. So most people have what is called a dose pack which would be something seven pills the first day six the second day and on down. But for me the treatment was seven pills for the first two weeks and six for the next two weeks and on down. This is a massive dose.
While prednisone is wonderful at reducing swelling it also creates multiple side effects. For me it makes me want to eat everything and see, causes redness and swelling in my face or something called Cushing's syndrome. It makes me horrendesly constipated and I can literally say I'm of crap because pretty much everything goes in and nothing comes out. And it makes me crazed. Sleep is terribly disrupted and I am as irritable as hell.
The first few times I had an exacerbation I would literally do a cost-benefit analysis of taking steroids. On the one hand I would be able to walk. On the other hand I would have no sleep, be constipated ,get really fat and look like a bloated monkey, and be a bitch on wheels as well.
My favorite steroid story is the time and I literally crashed my car into the side of my house. I was near the end of the steroid treatment so hadn't slept in what felt like for days. One of the people I was supervising at the time said that I was a little scary on steroids. I was driving home after a very long day so was irritable in general. My house is on the corner. The driveway is on the far side of the house so I usually swing a little wide going round the corner so I can pull into the driveway. There are some young men living across the street who worked on cars on an off. So there happened to be a huge van parked pretty close to the corner so I couldn't really see down the street. When I did my wide swing after the stop sign and could see around the van I realized I was face to face with an oncoming car. In my crazed state, I didn't think to stop and probably couldn't have stopped in time anyway. I just pulled really hard to the right which swung me up on the lawn and ended with me halfway through the living room wall. I got out of the car and screamed "Oh, my "Oh my God, Oh my God!" at the top of my lungs. I looked around and didn't see anyone so I screamed "OH MY GOD!" One more time. By that time everyone was coming. the neighbors the people from the next block people, from the next town... my husband came out of the house and saw it was me. He later said he thought "what idiot hit my house?" One of our neighbors said "whose house did you hit?" And I said " I'ts my own house. I hit my own house". He said "oh that's good". When everyone had seen what happened and slowly started to move away, I could see the damage I'd actually done. I hit the wall right between two rooms. I really only pushed the wall in a bit, didn't really crashed through it. I did push the coach a bit and since my son had been sitting on it, I was pretty freaked out,as was he. I also moved a shelf full of knickknacks and nothing broke, just move the shelf about 5 inches. It ripped the carpet in a corner, but almost nothing else got messed up. I said to my husband that someone must've been looking out for me that nothing got broken and no one got hurt. He said if someone was looking out for me I wouldn't have crashed into the house in the first-place. He had a point. Fortunately we knew a contractor who live close by and could come and prop up his ceiling so it wouldn't fall in. He knew a guy who could come and do the brick worked as well. The house was fixed by the end of the week. My car was not totaled believe it or not , but it took about a month to get it back from the repair shop because they had to order a special part or something. I was stuck driving a Dodge Neon for all that time. Talk about adding insult to injury... . Fortunately, since being on the tysabri, I haven't had any exacerbation and my love-hate affair with steroids is over for now.
When my son was in daycare one of his teachers had Lupus and also had to be on very high doses of steroids. She had some hallucinations, which is also a side effect of high doses, and one day she was putting the kids shoes into the refrigerator so they wouldn't spoil! I also had something called drug-induced euphoria one time. I felt terrible, I knew I felt terrible, but it was all okay. Everything felt wonderful. I told my supervisor, Karen, that I must have done some really major psychological work because everything felt so great. She didn't say anything as I think she knew that I was sort of out of my mind.
But if I had to be on prednisone again, I can survive all of the other side effects if I did have that euphoria back again!
So in conclusion, I hope that none of you have to experience the pain-in-the-ass of a prednisone treatment. And I hope and pray that I will never have to experience it again either!
See you tomorrow.
I can't believe it! When I was talking about medication yesterday I forgot to include prednisone. Oh, those fabulous steroids. Prednisone is one of those drugs that you definitely can have a love-hate relationship with. The treatment of choice for an MS exacerbation is the steroid medications. Steroids work by reducing inflammation and since MS symptoms are caused by multiple inflammations in the brain, they can be alleviated by reducing inflammation. They really do work, and reduce the symptoms for a time, but they cause a lot of other crap to happen to you, too.
I know that there are very many people who have had steroid treatment for one reason or the other. But the steroid treatment used for an exacerbation of MS is beyond any that most people will have to experience.
After my first exacerbation, the treatment was receiving an infusion of something called Solu Medrol. I can't remember how long the treatment lasted by think it was maybe up to two or three weeks. That would require going every day and sitting in a chair and getting about a boatload of that stuff. pumped into me!. After you get the Solu Medrol, the prednisone treatment starts. Steroids are one of those medications that you can't just quit cold turkey because it would really increase your chances of getting getting sick. And I think even can shut the system down or something like that. Anyway I know it's dangerous. So most people have what is called a dose pack which would be something seven pills the first day six the second day and on down. But for me the treatment was seven pills for the first two weeks and six for the next two weeks and on down. This is a massive dose.
While prednisone is wonderful at reducing swelling it also creates multiple side effects. For me it makes me want to eat everything and see, causes redness and swelling in my face or something called Cushing's syndrome. It makes me horrendesly constipated and I can literally say I'm of crap because pretty much everything goes in and nothing comes out. And it makes me crazed. Sleep is terribly disrupted and I am as irritable as hell.
The first few times I had an exacerbation I would literally do a cost-benefit analysis of taking steroids. On the one hand I would be able to walk. On the other hand I would have no sleep, be constipated ,get really fat and look like a bloated monkey, and be a bitch on wheels as well.
My favorite steroid story is the time and I literally crashed my car into the side of my house. I was near the end of the steroid treatment so hadn't slept in what felt like for days. One of the people I was supervising at the time said that I was a little scary on steroids. I was driving home after a very long day so was irritable in general. My house is on the corner. The driveway is on the far side of the house so I usually swing a little wide going round the corner so I can pull into the driveway. There are some young men living across the street who worked on cars on an off. So there happened to be a huge van parked pretty close to the corner so I couldn't really see down the street. When I did my wide swing after the stop sign and could see around the van I realized I was face to face with an oncoming car. In my crazed state, I didn't think to stop and probably couldn't have stopped in time anyway. I just pulled really hard to the right which swung me up on the lawn and ended with me halfway through the living room wall. I got out of the car and screamed "Oh, my "Oh my God, Oh my God!" at the top of my lungs. I looked around and didn't see anyone so I screamed "OH MY GOD!" One more time. By that time everyone was coming. the neighbors the people from the next block people, from the next town... my husband came out of the house and saw it was me. He later said he thought "what idiot hit my house?" One of our neighbors said "whose house did you hit?" And I said " I'ts my own house. I hit my own house". He said "oh that's good". When everyone had seen what happened and slowly started to move away, I could see the damage I'd actually done. I hit the wall right between two rooms. I really only pushed the wall in a bit, didn't really crashed through it. I did push the coach a bit and since my son had been sitting on it, I was pretty freaked out,as was he. I also moved a shelf full of knickknacks and nothing broke, just move the shelf about 5 inches. It ripped the carpet in a corner, but almost nothing else got messed up. I said to my husband that someone must've been looking out for me that nothing got broken and no one got hurt. He said if someone was looking out for me I wouldn't have crashed into the house in the first-place. He had a point. Fortunately we knew a contractor who live close by and could come and prop up his ceiling so it wouldn't fall in. He knew a guy who could come and do the brick worked as well. The house was fixed by the end of the week. My car was not totaled believe it or not , but it took about a month to get it back from the repair shop because they had to order a special part or something. I was stuck driving a Dodge Neon for all that time. Talk about adding insult to injury... . Fortunately, since being on the tysabri, I haven't had any exacerbation and my love-hate affair with steroids is over for now.
When my son was in daycare one of his teachers had Lupus and also had to be on very high doses of steroids. She had some hallucinations, which is also a side effect of high doses, and one day she was putting the kids shoes into the refrigerator so they wouldn't spoil! I also had something called drug-induced euphoria one time. I felt terrible, I knew I felt terrible, but it was all okay. Everything felt wonderful. I told my supervisor, Karen, that I must have done some really major psychological work because everything felt so great. She didn't say anything as I think she knew that I was sort of out of my mind.
But if I had to be on prednisone again, I can survive all of the other side effects if I did have that euphoria back again!
So in conclusion, I hope that none of you have to experience the pain-in-the-ass of a prednisone treatment. And I hope and pray that I will never have to experience it again either!
See you tomorrow.
Wednesday, November 28, 2012
Medications
Yesterday was my Tysabri day Tysabri is a medication that I receive through an infusion every four weeks. I have to go to a specific location that has been approved by Tysabria to administer this medication in this , case Cancer Care Specialists of Illinois. My doctor is Dr. Rose My mom described as a "wafter" when she met him. He is sort of ethereal and elegant. But he is also very nice man. My nurse's name is Sandy and she is a really lovely person, too. She is the best needle inserter in the world. She hardly ever needs more than one stick to get the IV in.
I always have to answer four questions before I get the medication: did I receive any treatment with corticosteroids? Did I have any major surgeries? I am having any confusion? And I forget what the other one is but I love the one about today having major surgeries within last 28 days without my knowledge.
Once I've answered the questions and survived sticks in my arm to start the IV, I can sit back and relax and receive my medication. Theoretically I'm supposed to hang around afterward to make sure I don't get PML which stands for progressive multifocal leukoencephalopathy.(PML is much easier to say). There is a risk of developing PML when you're on Tysabri. This is a condition in which the myelin rapidly disintegrates and you either die or become incredibly disabled. The chances are like one in 10,000 or something and while this sounds pretty scary, put one white marble in a bag with 9,999 black ones and see how long it takes you before you pull out the white one. There's your chances..
There are two types of medications for MS. There are symptom altering medications and there are disease modifying medications. There is no curing medication for MS because it is no cure.
I am on three symptom monitoring medications along with the Tysabri which is a disease modifying medication. The tysabri is disease monitoring because it slows down the progression of the disease and keeps you from having exacerbations or worsening of symptoms. Tysabri works making your sticky blood cells less sticky. It's sort of like it puts little raincoats on white blood cells. But the effects only last for about a month which is why you get the infusion every 28 days. Once I was talking to Dr. Rose about that process and I told him of my analogy of the raincoats and he laughed. He said that a male patients described the same process but said that the tysabri put condoms on the blood cells! Therein lies the difference between men and women!
Other disease modifying drugs which I have been on include Avonex and Betaseron. Those medications are interferons. Interferons are protiens which occur naturally in the body and which are thought to support the immune system. So the interferon meds replace proteins which may be lost or are no longer produced in patients with MS.
the Avonex is delivered in a once a week injection into a muscle. So once a week I would stick a needle about 3 inches long into my thigh. It was just a little surreal to look at a three inch long need and think "I'm going to jab this into my thigh, now!". But at least it was only once a week! The Betaseron is also an injection but the needle is tiny. We would call that a "skin pop". That particular shot was every other day and had to be rotated around my body so that it didn't create scarring or thickening of the tissues. I could give myself the shots in my stomach and my thighs, but I had to have my husband do the shot in my backside.. I wasn't joking on the days when he gave me a shot in butt, that he was a literal a pain in the ass!
The Tysabri is much easier and less painful. Plus I can rationalize sitting quietly in the chair for about two hours without feeling guilty that I'm not doing something more productive!
So that is the story of my medications and for now at least I am fortified on Tysabri!
A symptom altering drugs that I am on are Mirapex for restless leg syndrome which my family calls creepy foot, Oxybutinin which combats the dreaded leakage problems, and Nuvigil which helps me stay awake for the day. Those three along with my high blood pressure medication and three Metamucil tablets keep me functional.
Oh yeah, the cost of the tysabri is about $5,000 a month. Even with insurance after my deductible, it costs about $10,000 a year out of pocket. The Nuvigil cost about $100 a month and the others cost about $40-$50 a month. So between the medication costs and my insurance premiums I think I'd pay more in healthcare than I do for my mortgage. Do you see now why I am pro Obamacare?
That's it for the day. Stay tuned for more info about my life MS.
I always have to answer four questions before I get the medication: did I receive any treatment with corticosteroids? Did I have any major surgeries? I am having any confusion? And I forget what the other one is but I love the one about today having major surgeries within last 28 days without my knowledge.
Once I've answered the questions and survived sticks in my arm to start the IV, I can sit back and relax and receive my medication. Theoretically I'm supposed to hang around afterward to make sure I don't get PML which stands for progressive multifocal leukoencephalopathy.(PML is much easier to say). There is a risk of developing PML when you're on Tysabri. This is a condition in which the myelin rapidly disintegrates and you either die or become incredibly disabled. The chances are like one in 10,000 or something and while this sounds pretty scary, put one white marble in a bag with 9,999 black ones and see how long it takes you before you pull out the white one. There's your chances..
There are two types of medications for MS. There are symptom altering medications and there are disease modifying medications. There is no curing medication for MS because it is no cure.
I am on three symptom monitoring medications along with the Tysabri which is a disease modifying medication. The tysabri is disease monitoring because it slows down the progression of the disease and keeps you from having exacerbations or worsening of symptoms. Tysabri works making your sticky blood cells less sticky. It's sort of like it puts little raincoats on white blood cells. But the effects only last for about a month which is why you get the infusion every 28 days. Once I was talking to Dr. Rose about that process and I told him of my analogy of the raincoats and he laughed. He said that a male patients described the same process but said that the tysabri put condoms on the blood cells! Therein lies the difference between men and women!
Other disease modifying drugs which I have been on include Avonex and Betaseron. Those medications are interferons. Interferons are protiens which occur naturally in the body and which are thought to support the immune system. So the interferon meds replace proteins which may be lost or are no longer produced in patients with MS.
the Avonex is delivered in a once a week injection into a muscle. So once a week I would stick a needle about 3 inches long into my thigh. It was just a little surreal to look at a three inch long need and think "I'm going to jab this into my thigh, now!". But at least it was only once a week! The Betaseron is also an injection but the needle is tiny. We would call that a "skin pop". That particular shot was every other day and had to be rotated around my body so that it didn't create scarring or thickening of the tissues. I could give myself the shots in my stomach and my thighs, but I had to have my husband do the shot in my backside.. I wasn't joking on the days when he gave me a shot in butt, that he was a literal a pain in the ass!
The Tysabri is much easier and less painful. Plus I can rationalize sitting quietly in the chair for about two hours without feeling guilty that I'm not doing something more productive!
So that is the story of my medications and for now at least I am fortified on Tysabri!
A symptom altering drugs that I am on are Mirapex for restless leg syndrome which my family calls creepy foot, Oxybutinin which combats the dreaded leakage problems, and Nuvigil which helps me stay awake for the day. Those three along with my high blood pressure medication and three Metamucil tablets keep me functional.
Oh yeah, the cost of the tysabri is about $5,000 a month. Even with insurance after my deductible, it costs about $10,000 a year out of pocket. The Nuvigil cost about $100 a month and the others cost about $40-$50 a month. So between the medication costs and my insurance premiums I think I'd pay more in healthcare than I do for my mortgage. Do you see now why I am pro Obamacare?
That's it for the day. Stay tuned for more info about my life MS.
Tuesday, November 27, 2012
symptoms
I once heard MS described as a thousand head monster. That is because it is a disease of the brain and can attack anywhere and symptoms and disabilities can affect any part of brain functioniung.
My first symptom. as I said before, was going deaf in one ear. Since I had no idea what was going on and figured it was an ear infection or just a serious block, I did one of the worst things I could do. I actually was at a conference in Madison, Wisconsin with my friend Pam. The hotel we were staying had wonderful facilities including a pool and sauna. We blithely went into the sauna and heated ourselves up over a good length of time. We then went and got directly into the pool. I complained to her at the time that the cold water was sort of painful to me after the sauna. I just figured that was sort of odd but fairly normal. It was after that then I began to have more symptoms. I remember being dizzy all the time (and it wasn't because I am blonde!) When the double vision started I knew something was pretty seriously wrong.
Looking back after the diagnosis, I think I was having a lot of symptoms even before I lost hearing in my ear (I got it back by the way- hearing that is).
I was diagnosed about a year after my son was born. During pregnancy the immune system is heightened for everyone. So sometimes, in people with overachieving immune systems who are prone to MS, will have their first exacerbation following a pregnancy. After Eli was born, I noticed some numbness in my leg. It also began to feel that my fingers were clumsy when I was trying to write, and my handwriting, never stellar, started to be fairly illegible. The dizziness also started before the deafness.
When I heated myself up in the sauna, I increased the symptoms. In the days before more sophisticated testing, one of the ways they diagnosed MS was to put the patient in very hot water to see if they got worse! So I unwittingly ran a diagnostic test for myself when I took a sauna!
After I was diagnosed and received a heavy-duty doses of steroids, my hearing mostly came back and I was normally functioning for a while. As a young mother I did not want to take a disease altering medications because I knew that they were abortificent and that I wouldn't be able to have any more kids.
As it happened, the disease won out. I had at least two exacerbations during the first year with the primary symptom being inability to walk. So I caved and went on Avonex.
I will tell you some more about the medications tomorrow.
Since my diagnosis 18 years ago, I have remained on my feet, albeit with a cane. I have a very minor hearing loss in my right ear. I don't notice it until I am trying talk on the phone. My fingers are very numb all the time. I am very easily fatigued, but sleeping does not necessarily helped plus I sleep terribly. My very least favorites symptom is leakage! I do not like to expound on that last one. Suffice it to say that Depends are my friends!
That's enough for today. I'll be back tomorrow with another episode of life on MS
My first symptom. as I said before, was going deaf in one ear. Since I had no idea what was going on and figured it was an ear infection or just a serious block, I did one of the worst things I could do. I actually was at a conference in Madison, Wisconsin with my friend Pam. The hotel we were staying had wonderful facilities including a pool and sauna. We blithely went into the sauna and heated ourselves up over a good length of time. We then went and got directly into the pool. I complained to her at the time that the cold water was sort of painful to me after the sauna. I just figured that was sort of odd but fairly normal. It was after that then I began to have more symptoms. I remember being dizzy all the time (and it wasn't because I am blonde!) When the double vision started I knew something was pretty seriously wrong.
Looking back after the diagnosis, I think I was having a lot of symptoms even before I lost hearing in my ear (I got it back by the way- hearing that is).
I was diagnosed about a year after my son was born. During pregnancy the immune system is heightened for everyone. So sometimes, in people with overachieving immune systems who are prone to MS, will have their first exacerbation following a pregnancy. After Eli was born, I noticed some numbness in my leg. It also began to feel that my fingers were clumsy when I was trying to write, and my handwriting, never stellar, started to be fairly illegible. The dizziness also started before the deafness.
When I heated myself up in the sauna, I increased the symptoms. In the days before more sophisticated testing, one of the ways they diagnosed MS was to put the patient in very hot water to see if they got worse! So I unwittingly ran a diagnostic test for myself when I took a sauna!
After I was diagnosed and received a heavy-duty doses of steroids, my hearing mostly came back and I was normally functioning for a while. As a young mother I did not want to take a disease altering medications because I knew that they were abortificent and that I wouldn't be able to have any more kids.
As it happened, the disease won out. I had at least two exacerbations during the first year with the primary symptom being inability to walk. So I caved and went on Avonex.
I will tell you some more about the medications tomorrow.
Since my diagnosis 18 years ago, I have remained on my feet, albeit with a cane. I have a very minor hearing loss in my right ear. I don't notice it until I am trying talk on the phone. My fingers are very numb all the time. I am very easily fatigued, but sleeping does not necessarily helped plus I sleep terribly. My very least favorites symptom is leakage! I do not like to expound on that last one. Suffice it to say that Depends are my friends!
That's enough for today. I'll be back tomorrow with another episode of life on MS
Monday, November 26, 2012
What I give up for MS
High heel shoes, hiking, drinking alcohol, skating, skiing, going on a walking tour of Europe...
These are a very few of the things that I have given up and/or will never do.
Giving things up or downsizing is a normal part of aging. And it 50 years old, I know I'm no spring chicken. However, it is somewhat disheartening to watch commercials about how active people choose to be after they are retired and realize that there are things I cannot look forward to.
Once I was at the library, and I parked in a handicapped spot. This was a couple of years after I was diagnosed and they didn't need to have a cane at all times, but I was very easily fatigued and couldn't really walk for long periods of time. Parking in handicapped parking allows me to stay in places I want to be for a tiny bit longer. When I went back to my car, someone had left a note on my windshield. They had pulled a deposit slip from their checkbook and written, "You don't look handicapped me. Good job ripping off the taxpayers." I used to joke with my husband that if someone asked me why I was parked in a handicapped spot, I would say that I was blind in one eye and couldn't see so well out of the other. I thought I would take it in stride. But when I read that note, I was flooded with anger and grief. I was angry that someone would think that I would have so little integrity. I realize it was irrational for me to think that he would know what kind of person I was. But I was also angry because he would have such a lack of understanding.
How dare he begrudge me this very small compensation for a disease which takes so much for me.
I would gladly park on the other side of the Moon if I was capable.
MS means that I give up so many things that people take for granted. I know that there are much worse diagnoses out there and that I am very fortunate to have been well insured at the time that I was diagnosed. I had an African-American client whose sister was also diagnosed with MS. She didn't have the proper medical treatment and subsequently went blind and died at a very early age. I still don't understand why my life was worth more than hers, but I realized how fortunate I am to be a white person with an education in this country.
However, it doesn't keep me from feeling sorry for myself sometimes. When people talk about their trips to places like Ireland and Germany which I know are not handicapped accessible, I feel left out.
I feel sad too, when people talk about vacations in places like Hawaii or some other tropical paradise. I can't walk on the beach very well and I'm not supposed to get too hot because myelin doesn't like to conduct nerve impulses in the heat! So a nice warm tropical vacation, while not impossible, does not mean laying around on the beach every day. It means getting to be on the beach once in a while, probably wearing a cooling vest and a big hat to provide shade!
So to the man who left me than the nasty note. I will gladly switch you a handicapped parking space he will take over my multiple sclerosis. Wanna trade?
These are a very few of the things that I have given up and/or will never do.
Giving things up or downsizing is a normal part of aging. And it 50 years old, I know I'm no spring chicken. However, it is somewhat disheartening to watch commercials about how active people choose to be after they are retired and realize that there are things I cannot look forward to.
Once I was at the library, and I parked in a handicapped spot. This was a couple of years after I was diagnosed and they didn't need to have a cane at all times, but I was very easily fatigued and couldn't really walk for long periods of time. Parking in handicapped parking allows me to stay in places I want to be for a tiny bit longer. When I went back to my car, someone had left a note on my windshield. They had pulled a deposit slip from their checkbook and written, "You don't look handicapped me. Good job ripping off the taxpayers." I used to joke with my husband that if someone asked me why I was parked in a handicapped spot, I would say that I was blind in one eye and couldn't see so well out of the other. I thought I would take it in stride. But when I read that note, I was flooded with anger and grief. I was angry that someone would think that I would have so little integrity. I realize it was irrational for me to think that he would know what kind of person I was. But I was also angry because he would have such a lack of understanding.
How dare he begrudge me this very small compensation for a disease which takes so much for me.
I would gladly park on the other side of the Moon if I was capable.
MS means that I give up so many things that people take for granted. I know that there are much worse diagnoses out there and that I am very fortunate to have been well insured at the time that I was diagnosed. I had an African-American client whose sister was also diagnosed with MS. She didn't have the proper medical treatment and subsequently went blind and died at a very early age. I still don't understand why my life was worth more than hers, but I realized how fortunate I am to be a white person with an education in this country.
However, it doesn't keep me from feeling sorry for myself sometimes. When people talk about their trips to places like Ireland and Germany which I know are not handicapped accessible, I feel left out.
I feel sad too, when people talk about vacations in places like Hawaii or some other tropical paradise. I can't walk on the beach very well and I'm not supposed to get too hot because myelin doesn't like to conduct nerve impulses in the heat! So a nice warm tropical vacation, while not impossible, does not mean laying around on the beach every day. It means getting to be on the beach once in a while, probably wearing a cooling vest and a big hat to provide shade!
So to the man who left me than the nasty note. I will gladly switch you a handicapped parking space he will take over my multiple sclerosis. Wanna trade?
Sunday, November 25, 2012
What is MS
What is MS?
When Dr. Kovaleski diagnosed me with multiple sclerosis I knew very little about what it actually was. I knew that it had something to do with nerve cells and muscles no longer working. A little of what I knew I learned from watching the movie Lorenzo's Oil in which a kid developed something called leukodystrophy in which you rapidly lose all of your myelin leading to severe disability and eventually death.
Although Dr. Kovaleski didn't really explain everything at the time, he told me enough so I was able to figure some things out, and what he didn't tell me I learned for myself.
In multiple sclerosis what happens is, the white blood cells get into the brain and attack the myelin which is the fatty tissue which surrounds brain nerve cells or neurons. This causes inflammation of the myelin and eventually scarring. The initial inflammation is what causes symptoms, and the scarring is what causes permanent disability.
In order to understand what happens you need to understand the immune system. They call diseases like multiple sclerosis autoimmune disease because it is a disease caused by one's own immune system.
White blood cells are what help us fight diseases. When a virus enters your bloodstream, the white blood cells detect an intruder. White blood cells are very sticky due to their structure. They cling to the intruders and remove it from the bloodstream in order to keep you from being sick or help you to get well. In people with multiple sclerosis, the white blood cells are serious overachievers. They are too sticky and thus stick to the blood cell walls. Eventually they erode the blood cell walls and enter into parts of the body where they should not be. Probably if they get into toe or finger it would have no impact. However when they enter your brain they see the myelin as an intruder since it shouldn't be in your blood stream. That's what makes the myelin to become irritated and inflamed. Steroid drugs like prednisone decrease the inflammation. They also do a lot of other things to bodies that are very harmful. The treatments for MS are designed to keep you from having to have an exacerbation and thus have to have treatment with the steroid
drugs.
So the reason MS is not fatal initially, it's because you don't lose your myelin, you just get scarred up myelin. The reason MS kills someone is because of the symptoms rather than the disease itself.
So my lifespan is not expected to be any different from anyone else's. It's more about the quality of life.
That's my dry and boring blog for the day. I hope you have a better layman's understanding of MS.
(my Dragon NaturallySpeaking kept trying to put "my ass" instead of MS in this post. Aren't you glad that I'm not asking you to understand my ass?)
When Dr. Kovaleski diagnosed me with multiple sclerosis I knew very little about what it actually was. I knew that it had something to do with nerve cells and muscles no longer working. A little of what I knew I learned from watching the movie Lorenzo's Oil in which a kid developed something called leukodystrophy in which you rapidly lose all of your myelin leading to severe disability and eventually death.
Although Dr. Kovaleski didn't really explain everything at the time, he told me enough so I was able to figure some things out, and what he didn't tell me I learned for myself.
In multiple sclerosis what happens is, the white blood cells get into the brain and attack the myelin which is the fatty tissue which surrounds brain nerve cells or neurons. This causes inflammation of the myelin and eventually scarring. The initial inflammation is what causes symptoms, and the scarring is what causes permanent disability.
In order to understand what happens you need to understand the immune system. They call diseases like multiple sclerosis autoimmune disease because it is a disease caused by one's own immune system.
White blood cells are what help us fight diseases. When a virus enters your bloodstream, the white blood cells detect an intruder. White blood cells are very sticky due to their structure. They cling to the intruders and remove it from the bloodstream in order to keep you from being sick or help you to get well. In people with multiple sclerosis, the white blood cells are serious overachievers. They are too sticky and thus stick to the blood cell walls. Eventually they erode the blood cell walls and enter into parts of the body where they should not be. Probably if they get into toe or finger it would have no impact. However when they enter your brain they see the myelin as an intruder since it shouldn't be in your blood stream. That's what makes the myelin to become irritated and inflamed. Steroid drugs like prednisone decrease the inflammation. They also do a lot of other things to bodies that are very harmful. The treatments for MS are designed to keep you from having to have an exacerbation and thus have to have treatment with the steroid
drugs.
So the reason MS is not fatal initially, it's because you don't lose your myelin, you just get scarred up myelin. The reason MS kills someone is because of the symptoms rather than the disease itself.
So my lifespan is not expected to be any different from anyone else's. It's more about the quality of life.
That's my dry and boring blog for the day. I hope you have a better layman's understanding of MS.
(my Dragon NaturallySpeaking kept trying to put "my ass" instead of MS in this post. Aren't you glad that I'm not asking you to understand my ass?)
Saturday, November 24, 2012
There are some things you know about this blog and about me.
I using Dragon NaturallySpeaking software. While it is really very wonderful to not have to type, it still requires considerable editing. But if I don't catch it, you may read something that says utter pho sorgham stanzas and need to read it phonetically in order to realize that I meant under no circumstance.
Another thing to know about me is that I am a Play Therapist. Play therapy is a type of psychotherapy with children in which the play is used as a way to communicate and create change. For a play therapist, the play IS the therapy. Sometimes I wonder if I became a play therapist in order to be able to rationalize having toys because I really love them.
Today however, I'm going to tell you about the beginning of my MS story.
I first knew something was not quite right when I lost hearing in my right ear. I figured it was an ear infection and, since I didn't have a regular doctor at that time, I went to the doc- in- the -box or a walk-in clinic as I guess it's officially called. He looked in my ear and said, "well it's beautifully clean in there..." but gave me an antibiotic anyway. I began to suspect it wasn't truly an ear infection when I started to have double vision. That was a little more disconcerting. So this time I went to an otologist who told me I had sudden nerve deafness. It really didn't give me much to go on! He then told me I had " multiple lesions in my brain". In hindsight I guess I should've realized what that meant. He sent me to a neurologist who finally diagnosed me with multiple sclerosis. I really didn't know much about MS and kind of thought it was a death sentence. I began to cry and ask him "How long do I have ?" And he said "Oh no, you don't understand". He then began talking to my husband, who was there with me ,as if I wasn't able to understand speech anymore. Why do some men think that if a woman is crying their prefrontal cortex goes off line? I am perfectly capable of using two parts of my brain concurrently thank you. So ,as I was sobbing, and look at him and said, "oh no! You will talk to me directly." That was the start of a beautiful relationship.
Dr. Kovaleski explained MS to me in more detail with the caveat that I may end up in a wheelchair by the time I was 40.
Denial is a wonderful thing and I live in it quite nicely most of the time, but occasionally I need to face reality and that was one of those times.
I am now two weeks in front of my 50th birthday and I'm not in a wheelchair, fortunately. But MS definitely has become a very integral part of my life. MS can stand for many things. Frequently I call it my Much Suffering, my Multi-Symptoms, or simply my Massive S***fest.
But a rose by any other name is still a rose and MS is still multiple sclerosis.
That's it for today, guys, I'll be back again tomorrow with another episode from "this is my life"
Amy
I using Dragon NaturallySpeaking software. While it is really very wonderful to not have to type, it still requires considerable editing. But if I don't catch it, you may read something that says utter pho sorgham stanzas and need to read it phonetically in order to realize that I meant under no circumstance.
Another thing to know about me is that I am a Play Therapist. Play therapy is a type of psychotherapy with children in which the play is used as a way to communicate and create change. For a play therapist, the play IS the therapy. Sometimes I wonder if I became a play therapist in order to be able to rationalize having toys because I really love them.
Today however, I'm going to tell you about the beginning of my MS story.
I first knew something was not quite right when I lost hearing in my right ear. I figured it was an ear infection and, since I didn't have a regular doctor at that time, I went to the doc- in- the -box or a walk-in clinic as I guess it's officially called. He looked in my ear and said, "well it's beautifully clean in there..." but gave me an antibiotic anyway. I began to suspect it wasn't truly an ear infection when I started to have double vision. That was a little more disconcerting. So this time I went to an otologist who told me I had sudden nerve deafness. It really didn't give me much to go on! He then told me I had " multiple lesions in my brain". In hindsight I guess I should've realized what that meant. He sent me to a neurologist who finally diagnosed me with multiple sclerosis. I really didn't know much about MS and kind of thought it was a death sentence. I began to cry and ask him "How long do I have ?" And he said "Oh no, you don't understand". He then began talking to my husband, who was there with me ,as if I wasn't able to understand speech anymore. Why do some men think that if a woman is crying their prefrontal cortex goes off line? I am perfectly capable of using two parts of my brain concurrently thank you. So ,as I was sobbing, and look at him and said, "oh no! You will talk to me directly." That was the start of a beautiful relationship.
Dr. Kovaleski explained MS to me in more detail with the caveat that I may end up in a wheelchair by the time I was 40.
Denial is a wonderful thing and I live in it quite nicely most of the time, but occasionally I need to face reality and that was one of those times.
I am now two weeks in front of my 50th birthday and I'm not in a wheelchair, fortunately. But MS definitely has become a very integral part of my life. MS can stand for many things. Frequently I call it my Much Suffering, my Multi-Symptoms, or simply my Massive S***fest.
But a rose by any other name is still a rose and MS is still multiple sclerosis.
That's it for today, guys, I'll be back again tomorrow with another episode from "this is my life"
Amy
Friday, November 23, 2012
Hello
I think the day after Thanksgiving a good time to start this blog. When I think about being thankful, I definitely think of all the usual things. I am incredibly fortunate to still have both my parents are wonderful and supportive. I have a wonderful husband an amazing offspring and a brother and a sister who are absolutely my best friends, not to mention a lot of unrelated friends! I'm thankful for all the usual things, but, since I have multiple sclerosis I am thankful for a lot of things that you wouldn't normally think about. Right now I am very thankful for having Dragon NaturallySpeaking software since typing is such a drag. I am thankful for being able to walk across the room without dragging my knuckles on the floor. I am thankful that, (knock on wood,) I haven't had any significant cognitive problems. Okay, I'll admit to the usual senior moments and some retrieval issues occasionally, but generally I think my IQ is pretty intact.
I decided to start this blog because, regardless of all the things I can still do, I'm starting to have more and more difficulty doing a greater number of things. Walking is harder every day. I have to make sure a is close bathroom at all times. I want to sleep all the time, but a full night's sleep is something I have not experienced in several years now. It's getting more and more obvious that I will probably need to be on disability very soon.
Yeah, sure it will be a relief to not have to worry about working and making money. It will be a huge relief to not have to worry about whether or not my insurance company will stop paying for my treatments. But, thinking about it as leading to my somewhat delayed midlife crisis.
I am not ready to quit thinking about moving forward in my career. I am not ready to quit thinking about learning new things and training new people, and seeing new clients. I don't want to give up all of my toys in my play room. Especially that!
So in order to counteract the feeling of everything I'm giving up, I am going to start blogging every day (or at least as frequently as I can) in order to feel like I am still part of the world and still not invalid even if I have to be an invalid.
I'll be back tomorrow with more thoughts and feelings and hopefully a little humor.
(I realize that if I am going yto use voice recognition software, I must still edit)
I decided to start this blog because, regardless of all the things I can still do, I'm starting to have more and more difficulty doing a greater number of things. Walking is harder every day. I have to make sure a is close bathroom at all times. I want to sleep all the time, but a full night's sleep is something I have not experienced in several years now. It's getting more and more obvious that I will probably need to be on disability very soon.
Yeah, sure it will be a relief to not have to worry about working and making money. It will be a huge relief to not have to worry about whether or not my insurance company will stop paying for my treatments. But, thinking about it as leading to my somewhat delayed midlife crisis.
I am not ready to quit thinking about moving forward in my career. I am not ready to quit thinking about learning new things and training new people, and seeing new clients. I don't want to give up all of my toys in my play room. Especially that!
So in order to counteract the feeling of everything I'm giving up, I am going to start blogging every day (or at least as frequently as I can) in order to feel like I am still part of the world and still not invalid even if I have to be an invalid.
I'll be back tomorrow with more thoughts and feelings and hopefully a little humor.
(I realize that if I am going yto use voice recognition software, I must still edit)
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