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So 2009 is finally coming to a close. Harry and I are relieved it is ending and looking forward to more fun challenges ahead in 2010. For me I really hope for a healthy year with my lupus under control. Heading off to Asia for four months, we will see how it goes. I just figure, I can't stay home being concerned with "what-if", I just need to live my life with "what's possible". Lupus is now just apart of my every day.
It has been a crazy month with the holidays, finishing up multiple projects and contracts and preparing to be gone for four months. Doing this while trying to get ready to go and process all the paper work and all the program preparations at the same time. Of course, this has all gone on during Hanukkah, Christmas and now New Years, Harry's Birthday and Amanda's 21st! With all that there is a lot of excitement, nervousness, hesitation, and joy.
But at least I feel good and am busy and looking forward to an experience that could very well change my life in 2010. I am off to Bangkok on January 10th.
Tuesday, December 29, 2009
Thursday, December 17, 2009
So what is Lupus?
It is an auto-immune disease (my immune system is attacking my healthy cells). You get flares when it gets really bad and when it gets bad it can attack organs. So that is the fear that it will cause serious, long term damage. Therefore and the doctors want to control the flares so they don’t get that bad. So now I have to be on medicine the rest of my life to control it. That didn’t go over well. There is no known “cause” of Lupus although they think it is genetic but then something environmental triggers it. It doesn’t run in our family, although other auto-immune diseases do. To learn more go to www.lupus.org
There is also no known cure for lupus, they can only hope to control. So that is the hard part. I can’t fight it, I just have to accept it and keep living my life. They say flares can be caused my many different things, but stress is one and seems to be my trigger. I continued to try and control this all year but so many other things happened (see blog entry “Looking Back on 2009”)creating stress upon stress upon stress it hasn’t been easy.
BTW: What I did find out that symptoms of lupus are being exhausted, depression, aches, pains, arthritis, Reynaud’s syndrome, jaw pain. . .all that I had. I also do get a slight variation of the “butterfly rash” that looks more like a little healthy color in my cheeks. I thought my doctor was crazy when he said I had it, but my husband and I notice it come up at stressful times. So yes, that is it.
As friends would say I am a pretty darn healthy person, I exercise a lot, eat pretty well and don’t drink or smoke. But just like that, for reasons unknown, life can throw something at you.
The hardest part too is that I look perfectly well. During very stressful times, like at funerals, people would say how great I look. FYI, it’s the Lupus rash!
So don’t think it was just last January I went to the doctor and got medicine and it was all over. Quite the contrary. I went to the doctor 32 times in 2009 and 21 were related in some way to the Lupus. That is 2.6 visits a month. I also spent out of pocket over $3000 on medical expenses and I have pretty darn good insurance, I can’t even imagine if I didn’t.
What do I hope for in 2010? Less doctor visits!
There is also no known cure for lupus, they can only hope to control. So that is the hard part. I can’t fight it, I just have to accept it and keep living my life. They say flares can be caused my many different things, but stress is one and seems to be my trigger. I continued to try and control this all year but so many other things happened (see blog entry “Looking Back on 2009”)creating stress upon stress upon stress it hasn’t been easy.
BTW: What I did find out that symptoms of lupus are being exhausted, depression, aches, pains, arthritis, Reynaud’s syndrome, jaw pain. . .all that I had. I also do get a slight variation of the “butterfly rash” that looks more like a little healthy color in my cheeks. I thought my doctor was crazy when he said I had it, but my husband and I notice it come up at stressful times. So yes, that is it.
As friends would say I am a pretty darn healthy person, I exercise a lot, eat pretty well and don’t drink or smoke. But just like that, for reasons unknown, life can throw something at you.
The hardest part too is that I look perfectly well. During very stressful times, like at funerals, people would say how great I look. FYI, it’s the Lupus rash!
So don’t think it was just last January I went to the doctor and got medicine and it was all over. Quite the contrary. I went to the doctor 32 times in 2009 and 21 were related in some way to the Lupus. That is 2.6 visits a month. I also spent out of pocket over $3000 on medical expenses and I have pretty darn good insurance, I can’t even imagine if I didn’t.
What do I hope for in 2010? Less doctor visits!
Diagnosis
I went to my doctor on January 12th first thing in the morning. My doctor, after hearing from the nurse of my complaints and reason for my visit, can hurriedly in and said “Emily, you sound miserable”. And that described it perfectly. After the appointment, who knows how many vials of blood and x-rays, I left not knowing what was wrong but with a prescription for steroids.
I took them the next day and within 12 hours I noticed a difference. That night I didn’t start to stiffen up as I usually did. I remember being at spin class and I kept moving my wrists and hands and thinking, wow, they aren’t killing me. I hadn't realized I was so swollen everywhere (thought I put on a few pounds over the holiday) but I lost 5 pounds in that first week as the swelling reduced!
The next week was a trip to the rheumatologist and then the diagnosis of Lupus.
Of course, with my brother being a doctor and all the info on the web, at that point I really thought I had Rheumatoid Arthritis (which is bad). So when the Lupus diagnosis came, I almost laughed. I really didn’t think I had that when I read about it, mostly because I didn’t have the typical butterfly rash. I continued treatment. The steroids left me flat all winter, no emotion but no pain either. I felt better once I started to taper off of them in late March.
As I began to tell people about it, I did receive everyone’s opinion too; most of all was probably 20 different people saying I might have Lyme disease and I should look into. I kept reading about Lupus, Rheumatoid Arthritis, Lyme disease on-line, I was becoming very educated on them all. I knew my lifestyle might point to Lyme and in a lot of ways it “made sense” to me. Cause and effect. . ., but I really didn’t think that was what it was as my symptoms where a bit different. I did get a Lyme test and went to a naturopath just to make sure and to have answers for people when they ask be about it. Both the test and the naturopath were negative on Lyme.
Although I didn’t disagree with the diagnosis, I did think I should get a second opinion and did, with the same diagnosis and treatment. So with three doctor’s confirming it was Lupus, I started to accept my new fate and started to try and figure out how to live my life with Lupus.
I took them the next day and within 12 hours I noticed a difference. That night I didn’t start to stiffen up as I usually did. I remember being at spin class and I kept moving my wrists and hands and thinking, wow, they aren’t killing me. I hadn't realized I was so swollen everywhere (thought I put on a few pounds over the holiday) but I lost 5 pounds in that first week as the swelling reduced!
The next week was a trip to the rheumatologist and then the diagnosis of Lupus.
Of course, with my brother being a doctor and all the info on the web, at that point I really thought I had Rheumatoid Arthritis (which is bad). So when the Lupus diagnosis came, I almost laughed. I really didn’t think I had that when I read about it, mostly because I didn’t have the typical butterfly rash. I continued treatment. The steroids left me flat all winter, no emotion but no pain either. I felt better once I started to taper off of them in late March.
As I began to tell people about it, I did receive everyone’s opinion too; most of all was probably 20 different people saying I might have Lyme disease and I should look into. I kept reading about Lupus, Rheumatoid Arthritis, Lyme disease on-line, I was becoming very educated on them all. I knew my lifestyle might point to Lyme and in a lot of ways it “made sense” to me. Cause and effect. . ., but I really didn’t think that was what it was as my symptoms where a bit different. I did get a Lyme test and went to a naturopath just to make sure and to have answers for people when they ask be about it. Both the test and the naturopath were negative on Lyme.
Although I didn’t disagree with the diagnosis, I did think I should get a second opinion and did, with the same diagnosis and treatment. So with three doctor’s confirming it was Lupus, I started to accept my new fate and started to try and figure out how to live my life with Lupus.
Being sick. . .with Lupus
I am often asked, how did I know something was wrong? What are the symptoms of Lupus? So I thought I would put it in writing. From my recollection, I started to notice things last November (2008) but at the time I thought I was having extreme seasonal depression issues. What do I mean? I literally could not get out of bed. I was sleeping 11 or 12 hours every day and I felt terrible. I thought it was because I was sleeping too much and I really kept beating myself up about it. Also, around this same time my wrists started to hurt. At first I thought it was the new bikes at the gym and the change in my office space. I thought I had carpel tunnel and looked on Web MD. After following my symptoms for a few weeks, I realized I didn’t have carpel tunnel as the pain was in the wrong place. You ask, what pain? I literally couldn’t hold a pitcher of water of a coffee pot. Holding a coffee cup was possible, but difficult. So it was not just pain, but weakness too.
Since I hadn’t been feeling well my usually daily exercise was limited to maybe every other day. I started to have pains in my arms and shoulders and was extremely tight all over and figured it had something to do with lack of exercise or sleeping wrong or the cold weather. I kept thinking, I turned 40 and now everything hurts, old age sucks! My legs and feet hurt at times too, but I blew that off thinking I was “sore” from exercising less. So by mid December I was exhausted, depressed, my arms, shoulders and wrists hurt and I often was “sore”, like exercise sore . . . but all the time.
In mid December I had this weird arm pain that I had once before in the previous summer. It was a pain in my upper arm that I could not pinpoint where it was coming from, but had a hard time lifting my arm over my shoulder. My weekly swim became difficult and one day I had to wait it out in the hot tub while my sister swam. I went xc skiing and couldn't pole at all (pain and weakness in my arms persisted).
It was about this time when I noticed my hands becoming arthritic. They have been cold for years now and I walk with huge ski gloves all the time but this time the morning arthritis was terrible. I thought again, that I was just getting old and getting arthritis. I also noticed my throat and jaw hurting and thought I was getting a winter cold.
By Christmas all of these things were going on at once. The morning had gotten steadily worse and I could barely get out of bed. My arms felt like “dead weight” in the a.m. and I would have to sort of lift them up and use only my core to get out of bed. I would notice the pain steadily decreasing during the day and then around 6 or 7 at night starting up again. Between Christmas and New Years things seemed to really get worse. My hands became so arthritic I could not open the toothpaste or hold my toothbrush. I had to hold a coffee cup with two hands. I could barely walk the dog because I couldn’t hold the leash. I couldn’t bend any fingers in the morning, at all.
I was working that week and I usually get a lot done in the office as there are few phone calls and I find it a great time to work on a project. But typing had become difficult too as I had to hold my hands funny to type without pain. I also had a hard time gripping a pen or pencil. I noticed my concentration being off as I kept fidgeting with my hands and wrists to try and get comfortable. I was taking a lot of ibuprofen which sort of helped, but not a whole lot.
It was at this time that I noticed my jaw pain was consistent. My sore throat never turned into a cold and my jaw continued to get worse. I couldn’t justify this pain related to exercise and ignored it at first. It was when I went to bite into an apple one afternoon and could not open my mouth wide enough that I realized that there was something seriously wrong with me. I realized then that my pain was systemic, it was literally everywhere.
During November and December I was still doing everything and I didn’t tell many people about it because it seemed like such strange random pains and I still didn’t really consider that anything was wrong. I would get up an extra hour early take 600 mg of ibuprofen and wait to see if I could get my arms and hands working before I went running or to spin class.
New Years Eve I see as the apex of it all and it was when I really knew something was wrong. Since I usually would go to bed by 10:00, staying up until midnight brought stiffness and pain I hadn’t felt before. I didn’t want to alarm anyone and continued to play games and socialize but in my head was counting every minute until we could go home and I could lay down and go to sleep and try to pretend the pain wasn’t there. I was so uncomfortable EVERYWHERE it created a pain that is really indescribable. It wasn’t a yell out loud “ouch”, but a constant allover and everywhere total uncomfortableness.
In addition I had two incidences where my fingers just “went to sleep” for no reason. They literally lost all feeling and turned BLUE! Eventually it went away. I later found out that this is called Reynaud’s Syndrome.
I remember seeing my sister at a morning spin class and she touched and squeezed my hand to say “hey” and I screamed in pain at her to not touch me (not nicely) and the look on her face was complete fear, she knew then that something was really wrong.
On January 2, which was a Friday I called the doctor first thing and they were closed. I called on Monday and for an unexplainable reason waited until the following Monday to actually go in to see my doctor. Again I spent the week as usual; meeting friends at 6:30 to run in the snow, going to spin class, driving to meetings, all uncomfortably, but now an uncomfortableness that I was accustomed too. Coming home from Alpena (2 hours away) that week was hard. My body ached and driving was miserable.
The Sunday before my doctor’s appointment I went skiing with by brother’s family. I didn’t want to go as I wasn’t feeling well but they convinced to come out since we had free ski tickets for the day. I ended up going, knowing if I can walk I can ski. So I did. Getting my boots on was hard, as I said the pain and weakness was the worst in my hands, wrists and arms. But I struggled through it and went skiing and tried to have fun. (I always wondered if people noticed I was not well.) When I went to take my boots off, I didn’t think I could. I was hiding behind the car hoping no one noticed that I couldn’t but also hoping someone would so they would help me. I couldn’t believe I couldn’t get them off. I finally did but struggling, kicking, and pushing through the pain and the tears. I just couldn’t imagine having to ask for help to take my boots off. . . I have been doing that since I was three years old and a lesson my father taught all of us Meyerson kids was if you get the priviledge to ski you have to learn to take care of your equipment. The tears that shed that day in the Boyne Mountain parking lot reminded me of being a kid and struggling over the same thing in the same place, but as an adult it was really hard to justify . . . .
Since I hadn’t been feeling well my usually daily exercise was limited to maybe every other day. I started to have pains in my arms and shoulders and was extremely tight all over and figured it had something to do with lack of exercise or sleeping wrong or the cold weather. I kept thinking, I turned 40 and now everything hurts, old age sucks! My legs and feet hurt at times too, but I blew that off thinking I was “sore” from exercising less. So by mid December I was exhausted, depressed, my arms, shoulders and wrists hurt and I often was “sore”, like exercise sore . . . but all the time.
In mid December I had this weird arm pain that I had once before in the previous summer. It was a pain in my upper arm that I could not pinpoint where it was coming from, but had a hard time lifting my arm over my shoulder. My weekly swim became difficult and one day I had to wait it out in the hot tub while my sister swam. I went xc skiing and couldn't pole at all (pain and weakness in my arms persisted).
It was about this time when I noticed my hands becoming arthritic. They have been cold for years now and I walk with huge ski gloves all the time but this time the morning arthritis was terrible. I thought again, that I was just getting old and getting arthritis. I also noticed my throat and jaw hurting and thought I was getting a winter cold.
By Christmas all of these things were going on at once. The morning had gotten steadily worse and I could barely get out of bed. My arms felt like “dead weight” in the a.m. and I would have to sort of lift them up and use only my core to get out of bed. I would notice the pain steadily decreasing during the day and then around 6 or 7 at night starting up again. Between Christmas and New Years things seemed to really get worse. My hands became so arthritic I could not open the toothpaste or hold my toothbrush. I had to hold a coffee cup with two hands. I could barely walk the dog because I couldn’t hold the leash. I couldn’t bend any fingers in the morning, at all.
I was working that week and I usually get a lot done in the office as there are few phone calls and I find it a great time to work on a project. But typing had become difficult too as I had to hold my hands funny to type without pain. I also had a hard time gripping a pen or pencil. I noticed my concentration being off as I kept fidgeting with my hands and wrists to try and get comfortable. I was taking a lot of ibuprofen which sort of helped, but not a whole lot.
It was at this time that I noticed my jaw pain was consistent. My sore throat never turned into a cold and my jaw continued to get worse. I couldn’t justify this pain related to exercise and ignored it at first. It was when I went to bite into an apple one afternoon and could not open my mouth wide enough that I realized that there was something seriously wrong with me. I realized then that my pain was systemic, it was literally everywhere.
During November and December I was still doing everything and I didn’t tell many people about it because it seemed like such strange random pains and I still didn’t really consider that anything was wrong. I would get up an extra hour early take 600 mg of ibuprofen and wait to see if I could get my arms and hands working before I went running or to spin class.
New Years Eve I see as the apex of it all and it was when I really knew something was wrong. Since I usually would go to bed by 10:00, staying up until midnight brought stiffness and pain I hadn’t felt before. I didn’t want to alarm anyone and continued to play games and socialize but in my head was counting every minute until we could go home and I could lay down and go to sleep and try to pretend the pain wasn’t there. I was so uncomfortable EVERYWHERE it created a pain that is really indescribable. It wasn’t a yell out loud “ouch”, but a constant allover and everywhere total uncomfortableness.
In addition I had two incidences where my fingers just “went to sleep” for no reason. They literally lost all feeling and turned BLUE! Eventually it went away. I later found out that this is called Reynaud’s Syndrome.
I remember seeing my sister at a morning spin class and she touched and squeezed my hand to say “hey” and I screamed in pain at her to not touch me (not nicely) and the look on her face was complete fear, she knew then that something was really wrong.
On January 2, which was a Friday I called the doctor first thing and they were closed. I called on Monday and for an unexplainable reason waited until the following Monday to actually go in to see my doctor. Again I spent the week as usual; meeting friends at 6:30 to run in the snow, going to spin class, driving to meetings, all uncomfortably, but now an uncomfortableness that I was accustomed too. Coming home from Alpena (2 hours away) that week was hard. My body ached and driving was miserable.
The Sunday before my doctor’s appointment I went skiing with by brother’s family. I didn’t want to go as I wasn’t feeling well but they convinced to come out since we had free ski tickets for the day. I ended up going, knowing if I can walk I can ski. So I did. Getting my boots on was hard, as I said the pain and weakness was the worst in my hands, wrists and arms. But I struggled through it and went skiing and tried to have fun. (I always wondered if people noticed I was not well.) When I went to take my boots off, I didn’t think I could. I was hiding behind the car hoping no one noticed that I couldn’t but also hoping someone would so they would help me. I couldn’t believe I couldn’t get them off. I finally did but struggling, kicking, and pushing through the pain and the tears. I just couldn’t imagine having to ask for help to take my boots off. . . I have been doing that since I was three years old and a lesson my father taught all of us Meyerson kids was if you get the priviledge to ski you have to learn to take care of your equipment. The tears that shed that day in the Boyne Mountain parking lot reminded me of being a kid and struggling over the same thing in the same place, but as an adult it was really hard to justify . . . .
Crazy 2009
2009 was a pretty difficult year for me to say the least. Starting out in January I was diagnosed with Lupus; learning to live with this diagnosis has been tough and has taken a lot of my energy this year. Then there were lots of family issues including Harry’s brother passing away and then my step-father, just two months apart. Both brought on new challenges to our household related to estates, family dynamics, and family member health and safety. Harry’s being his 18 year old nephew who was now alone and mine being my mother who was now alone. And, if that didn’t sound bad enough, I forgot to mention the midnight ER visit after a beetle crawled in my ear when I was sleeping! Yes, that was extremely traumatic! So that, in short were the difficulties. But that doesn’t really explain it so I thought I would post a series of entries related to my year and the Lupus in particular. . . if you’re interested stay tuned. . .
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