Well, last night was the big night. I got my x-ray results and had my 1st adjustment.
For a long time now, I have always thought that many of my health problems were linked together and that the Dr.s were not making the connection. I would see my OB/GYN for Endometriosis diagnoses/pain. Then my hematologist for my ITP (autoimmune; low platelet count), Gastro Dr. for acid reflux and colon problems, and now the rheumologist for the Fibromyalgia. I would like to think my primary care doctor looks at all this and tries to find a common cause (or cure) but I just don't think she has the time. My list of health problems is far to long for a 37 year old.
So, where am I going with this? I have wanted a wholistic approach. When the Chiro showed my my x-rays, she said some interesting things. She said some of my nerves that were not functioning properly were the nerves connected with the spleen, gallbladder, colon, and intestines. Hmmmm....my platelets are being killed off in the spleen (so there has been talk of removing the spleen all together), my gallbladder was removed for stones and infection, and the gastro doctor told me that I have scar tissue wrapped around my colon from either endometriosis or c-section. I don't think the Chiro even knew how instantly I made that connection.
The next nerve problem were the ones that run to the kidneys, ovaries, utereus. She asked me if I had painful periods. Well, I am on YAZ birth control even though my husband had a vasectomy. The YAZ controls the pain and regulates my period. Yup, another drug to fix the problem. Supposedly, I have endometriosis and have been told to have a hysterectomy. Yup, some dr.s really want to take out all of our organs. I have lost my gallbladder, talk of taking out the spleen, and then the hysterectomy. It's too much to take in sometimes.
So, Dr.s keep subscribing new drugs and I just keep going on exhausted and miserable.
Ok, now I am sort of sold, but still a skeptic...I had my 1st adjustment. I layed flat on my stomach and she cracked some back bones. It didn't hurt, just felt like some pressure. Amazing it didn't hurt really - considering even the slightest touch hurts sometimes.
Then, I laid on my back and she cracked my head/neck. That was loud and a little shocking, but I can't say that it hurt. All in all, it took about 5 minutes.
Then, I went into another room where they did electric stimulation on my back shoulder muscles. It tingles, but kind of felt good. That lasted 8 minutes. Next, the massage table. I am not sure what this is really called, but I laid face up on a table and a ball moved up and down my back. It didn't feel great, kind of uncomfortable. But, it didn't hurt enough for me to want to stop it.
Ok...that was the visit. Now, on to the schedule. She wants me to come in 3 times a week. Honestly, I was thankful it wasn't daily. It makes sense that they want to do an intense period of therapy. The main goal is to get me out of pain immediately. I am all for it, of course! I would do the 3 times per week for 4 weeks and then drop down to 2 times per week. And, slowly get to a point where I go once per month.
Although my insurance covers a lot of it, I have a $20 copay at each visit. It's not hard math - $60 per week and $240 for the month. Yikes. Honestly, I don't think its too much to pay for relief. I would pay more if it took me out of the current misery I am in. But, the timing is a little rough. Christmas is fast approaching and we have a long list of people we need to buy for. And, we really want to move in the spring and we are saving our money for a down payment. My husband is in real estate and these are also his slow months, so income isn't as high as it was in the summer.
But, how can I walk away from something that might help? I cannot live the rest of my life going to bed at 8pm only to drag out of bed each morning in pain and fog. Its a miserable way to live. I have to try this or I won't know if it works or not.
I will say, after my 1st adjustment, I do feel a little better. My fatigue last night was not as bad as usual (I made it to 9:30pm- lol). And, although my legs still have a lot of muscle pain, my overall stiffness isn't as bad.
So, long story short, I am going to keep at it. But, I will pay week by week and if it isn't helping, I will discontinue this and keep searching for "cure".
Wednesday, October 7, 2009
Tuesday, October 6, 2009
Friendships
I recently read an article about friendships and support for people with fibro. I have been thinking a lot about it. To sum it up, it basically said you need to surround yourself with positive people and people that at least try to understand. I am not sure that is even possible, I would cut out majority of my friends. In fact, there are some friends I haven't even told about the fibro.
The alternative to this (which was mentioned in the article) was to lower your expectations about people understanding what we are going through. This is where I am at. I am trying not to let some things that other people say get to me, but it is VERY hard. One friend said "Fibro what?" when I said the word Fibromyalgia. She knew I had this, but couldn't really pronounce it, I guess. She is a stay-at-home mom of a little boy that is 5 years old and she complains to me constantly about how much she has to do around the house. For some reason, she thinks since I work full-time that I do not have the same amount of chores she does. I can't figure out exactly why she thinks she has more laundry than we do when we have 1 additional family member. But, that is not the point.
One time when I told her I couldn't babysit her son on a Thursday night because I had to get up for work the next day and I go to bed early she said (brace yourself): "You need to take a vitamin." GASP- that is what I did. How dare she?
I shared it with my husband and we both rolled our eyes. If all I needed to do was take a vitamin, well, I would thank my lucky stars. And you know what, I do take a vitamin. Does it help? Not one bit. :)
The alternative to this (which was mentioned in the article) was to lower your expectations about people understanding what we are going through. This is where I am at. I am trying not to let some things that other people say get to me, but it is VERY hard. One friend said "Fibro what?" when I said the word Fibromyalgia. She knew I had this, but couldn't really pronounce it, I guess. She is a stay-at-home mom of a little boy that is 5 years old and she complains to me constantly about how much she has to do around the house. For some reason, she thinks since I work full-time that I do not have the same amount of chores she does. I can't figure out exactly why she thinks she has more laundry than we do when we have 1 additional family member. But, that is not the point.
One time when I told her I couldn't babysit her son on a Thursday night because I had to get up for work the next day and I go to bed early she said (brace yourself): "You need to take a vitamin." GASP- that is what I did. How dare she?
I shared it with my husband and we both rolled our eyes. If all I needed to do was take a vitamin, well, I would thank my lucky stars. And you know what, I do take a vitamin. Does it help? Not one bit. :)
Feeling Motivated
So, as the cycle goes, I had 2 days of pain and today I feel much better. Not 100% pain free, but so much better. As the fog clears and I feel as though I can manage this, I start to look for ways to make myself feel better. I am always trying to figure out what I did differently yesterday to make me feel so much better today. As if I can figure out the rhyme and reason of fibromyalgia.
So, last night I stretched out across the entire bed when falling asleep (my hubby and the dog weren't in bed yet). So, I thought maybe this helped and came up with a theory: once Simba (my small Shih Tzu) comes to bed, she likes to sleep on my feet or around my feet. This leaves me kind of cramped while I am sleeping. Maybe I need to just push her out of the way and take up more space. As I told this to my husband this morning, he laughed and said I already stretch out and take up most of the space. So- that theory is out the window! :)
Another thing I did well last night was take my Zyrtec. I take Zyrtec every night before bed, it keeps my skin calm. If I don't take it, I tend to get itchy all over. My hands and feet burn in a strange way that is more like itchy...but burning. I have had a hard time explaining this odd itching thing to my doctors. If I go 2-3 days without Zyrtec, it gets really bad and can sometimes lead to hives and blotching. But, Zyrtec does the trick.
Of course with all of the itching, I have had extensive allergy testing. No food allergies that they can find and no elevated levels of histamine. So, what is causing it then? Doctors do not know (again). They said it could be a preservative in a food or something like that, but its nearly impossible to figure out. So, if Zyrtec does the trick- then we will continue that expensive treatment. Since it went over the counter- its pretty expensive.
But, anyway, I do think when I take Zyrtec at night - I wake up clearer. I guess its one less thing my body needs to fight.
Other things that I think can help is music and stretching. If I put music on my computer while I work, it lifts my spirits and I am distracted from the pain. It's still there, but I am not thinking about it. And, stretching. I am going to try stretching 3 times a day to see if this helps at all. I have no evidence that it will, but I am going to give it a try.
I go to the Chiropractor tonight and I am a little worried that they are going to try to get me to come in every day. I can't afford that. I think I will have a $20 co-pay and I can't afford to pay that daily. We'll see how it goes.
So, last night I stretched out across the entire bed when falling asleep (my hubby and the dog weren't in bed yet). So, I thought maybe this helped and came up with a theory: once Simba (my small Shih Tzu) comes to bed, she likes to sleep on my feet or around my feet. This leaves me kind of cramped while I am sleeping. Maybe I need to just push her out of the way and take up more space. As I told this to my husband this morning, he laughed and said I already stretch out and take up most of the space. So- that theory is out the window! :)
Another thing I did well last night was take my Zyrtec. I take Zyrtec every night before bed, it keeps my skin calm. If I don't take it, I tend to get itchy all over. My hands and feet burn in a strange way that is more like itchy...but burning. I have had a hard time explaining this odd itching thing to my doctors. If I go 2-3 days without Zyrtec, it gets really bad and can sometimes lead to hives and blotching. But, Zyrtec does the trick.
Of course with all of the itching, I have had extensive allergy testing. No food allergies that they can find and no elevated levels of histamine. So, what is causing it then? Doctors do not know (again). They said it could be a preservative in a food or something like that, but its nearly impossible to figure out. So, if Zyrtec does the trick- then we will continue that expensive treatment. Since it went over the counter- its pretty expensive.
But, anyway, I do think when I take Zyrtec at night - I wake up clearer. I guess its one less thing my body needs to fight.
Other things that I think can help is music and stretching. If I put music on my computer while I work, it lifts my spirits and I am distracted from the pain. It's still there, but I am not thinking about it. And, stretching. I am going to try stretching 3 times a day to see if this helps at all. I have no evidence that it will, but I am going to give it a try.
I go to the Chiropractor tonight and I am a little worried that they are going to try to get me to come in every day. I can't afford that. I think I will have a $20 co-pay and I can't afford to pay that daily. We'll see how it goes.
Monday, October 5, 2009
Mondays hurt most
Mondays are usually the worst day of the week for me (with the exception of yesterday, a very sore Sunday). My job requires very little physical effort, mostly sitting at a computer. So, on Saturday and Sunday I tend to be more active and also spend 99.9% of my waking time with the kids. So, by Monday I tend to feel like I didn't get any sleep all weekend. The strange part is I actually got more sleep than during the week.
This morning I am having a hard time waking up. Because I was so sore yesterday, I took muscle relaxers at 6:45pm last night. I was asleep by 9:30pm and still had difficulty when the alarm clock started to go off at 6:30am. I finally got up at 7:10 and then was 30 minutes late for work. Unfortunately, this is a common occurance. I can't seem to get out of bed in the morning, even after a good night of sleep. I wish I could wake up refreshed. The only time that ever happens is on a rare occassion that I can sleep in until noon. I am not joking when I say that I could sleep for 15 hours without any problem.
So, here I am on Monday. I feel a little better physically, but still sore. Mentally, I am in a bit of a fog and feel like I can't get my engine started. I had a little over 2 cups of coffee and breakfast, but its not helping.
I know tomorrow will be better. I seem to gain energy throughout the week and then fizzle Friday night. Saturdays are usually great because I sleep in a little later. Sundays usually aren't too bad, unless I did extra activities on Saturday. Then there are Mondays...
This morning I am having a hard time waking up. Because I was so sore yesterday, I took muscle relaxers at 6:45pm last night. I was asleep by 9:30pm and still had difficulty when the alarm clock started to go off at 6:30am. I finally got up at 7:10 and then was 30 minutes late for work. Unfortunately, this is a common occurance. I can't seem to get out of bed in the morning, even after a good night of sleep. I wish I could wake up refreshed. The only time that ever happens is on a rare occassion that I can sleep in until noon. I am not joking when I say that I could sleep for 15 hours without any problem.
So, here I am on Monday. I feel a little better physically, but still sore. Mentally, I am in a bit of a fog and feel like I can't get my engine started. I had a little over 2 cups of coffee and breakfast, but its not helping.
I know tomorrow will be better. I seem to gain energy throughout the week and then fizzle Friday night. Saturdays are usually great because I sleep in a little later. Sundays usually aren't too bad, unless I did extra activities on Saturday. Then there are Mondays...
Sunday, October 4, 2009
Chiropractor
So, I went to the chiropractor on Friday and it was an interesting experience. They asked a lot of questions about my health and stuff. They also took 6 x-rays of my back. I can't really remember much of what they said, because they had me do most of the talking. They said they think they can help me relieve some of the pain.
My next appointment is Tuesday to discuss a plan of action and the x-rays.
Yesterday I did some cleaning around the house, nothing too exhausting or crazy. But, today my thighs are soooooo sore. I tried using a heating pad this morning and it does help a little. But, after awhile, the soreness returns. I felt as if I had run a marathan yesterday and maybe did some strength training in my legs. It is just so frustrating. We were planning on taking the kids to the pumpkin patch today and I was determined not to let this interfere. I refuse to let this stop me from doing things I plan on doing.
So, we went and there were times when my legs really hurt. I think I am getting worse, not better. I do not do anything to cause this pain. I have stopped social drinking too because I worry that maybe that increases the pain. Doesn't seem to matter what I do or don't do- its always the same. Sorry to gripe, but it is really getting on my nerves. I just want to feel better and be "normal".
My next appointment is Tuesday to discuss a plan of action and the x-rays.
Yesterday I did some cleaning around the house, nothing too exhausting or crazy. But, today my thighs are soooooo sore. I tried using a heating pad this morning and it does help a little. But, after awhile, the soreness returns. I felt as if I had run a marathan yesterday and maybe did some strength training in my legs. It is just so frustrating. We were planning on taking the kids to the pumpkin patch today and I was determined not to let this interfere. I refuse to let this stop me from doing things I plan on doing.
So, we went and there were times when my legs really hurt. I think I am getting worse, not better. I do not do anything to cause this pain. I have stopped social drinking too because I worry that maybe that increases the pain. Doesn't seem to matter what I do or don't do- its always the same. Sorry to gripe, but it is really getting on my nerves. I just want to feel better and be "normal".
Friday, October 2, 2009
Talking about Fibro
I feel wierd talking about it. I get the impression from the "listener" that this is something very mild.
So, even if a conversation warrants a mention of fibro, I think I will avoid talking about it from now on. Of course, my husband is the exception. He lives with me everyday and sees how if impacts my life. I hate to say that it interferes with my daily activities, but it does. I try not to let it. It doesn't stop me, but it does slow me down. Who knows, maybe that isn't a bad thing. But, I would like to be much more active than I am now and I know my body is holding back.
Let's hope for a good outcome at the Chriopractor today!
So, even if a conversation warrants a mention of fibro, I think I will avoid talking about it from now on. Of course, my husband is the exception. He lives with me everyday and sees how if impacts my life. I hate to say that it interferes with my daily activities, but it does. I try not to let it. It doesn't stop me, but it does slow me down. Who knows, maybe that isn't a bad thing. But, I would like to be much more active than I am now and I know my body is holding back.
Let's hope for a good outcome at the Chriopractor today!
Thursday, October 1, 2009
Chiropractor
I will start to keep up with my blog. It's been awhile and I haven't felt much like writing. I am not sharing this blog with family and friends because I want a place where I can write about how I honestly feel without being thought of as "dramatic" or "crazy". I really think most of my family, outside of my husband, does not believe I have fibromyalgia. Like many previous doctors, they think I am just stressed out because I work full-time and I have two small children.
But, this is not stress. Quite honestly, outside of being in pain so often, I have very little stress. My body feeling ages beyond my true years is the only stress I really have. I am happy in my marriage, thrilled and thankful for my children, and I really like my job. Of course, I wish we had more money and all that stuff, but it doesn't consume my thoughts.
So, I am seeing a chiroprator on Friday, at the recommendation of a friend. It's sort of a last resort and ditch effort to reclaim my body. I am so sick of being tired and sore. The fibro has gotten worse, not better. Well, for the most part. I have been on Effexor for quite awhile now and it doesn't really seem to do a whole lot. I am not depressed, so maybe it does help there. One very noticible thing though, I have no more jaw pain. When I was 1st diagnosed with fibro, I had an aching jaw almost all of the time. My dentist said I had classic TMJ and offered some things I could do. But, nothing worked except this Effexor. When I started that, the jaw pain went away completely. Wierd! But, hey, I'll take it.
I struggle with exercise. I love to exercise and go to the gym, etc. But, lately, I find that the days following even small workouts leave me in a great deal of pain. We had bought a wii fit and I thought those "light" workouts would be perfect. The yoga didn't cause much pain, but it isn't like being in a real yoga class. But, I bought the wii active and was doing some boxing moves and kicks. I really enjoyed it! But, the next day I could hardly walk. I know I was using some muscles that haven't been used in a long time, but the amount of soreness exceeded what would be considered normal. I wasn't just sore. I could barely walk. This was an awakening to the fact that fibro is interferring with my life.
A week or so later I wanted to do the wii active again, but didn't because I was leaving for a business trip the following day. I knew I couldn't handle walking thru the airport with such sore legs. I have read that managing fibro is all about choices. Well, that just SUCKS. So, I have to choose to slow down when I want to live my life to the fullest? I have to choose not to exercise so I can do basic activities the next day? That is not a solution for me. I don't want to choose not to do things that I enjoy.
While I was on the business trip, I realized just how much this affects my life. I was in bed early each night and exhausted at the end of the day (even though I was sitting in conferences most of the day). I was traveling with my boss who is about 20 years older than me and I couldn't keep up with her level of energy. This was extremely frustrating for me.
I also came down with strep throat again. This is when a friend asked me if I considered a chiropractor. I had considered it, but really never followed through. My husband and I have discussed massage therapy, but I am actually afraid a massage will hurt! Sometimes the slightest pressure on my shoulders is very painful. I will go to the chiropractor and see if she can help. At this point, I feel like I have nothing to lose. I want my body back.
I need to make a list of all my ailments (long list) and maybe she can connect them. It seems like when I fix one thing, another breaks. I wonder if this could help my ITP too?
ITP. This is an auto-immune disease that I was diagnosed with in about 2000 or 2001. My body seems to destroy my platelets and the doctors don't really know why. My counts do not typically get dangerously low. When I was first diagnosed, the count was about 110k. For a normal person, platelet counts are 250k - 450k. At 110k, I was not at risk for much of anything, but they just kept an eye on it because it wasn't normal. I wasn't treated for it, but just bruised easily. I didn't get concerned with this again until 2004 when I was pregnant with my 1st child. Sometimes women develop ITP when they are pregnant and then their counts are normal again after birth. Well, interestingly enough, my counts went up to about 125k.
If your counts are below 100k, doctors are hesitant to give you an epidural. That was really my biggest concern, making sure I could deliver without pain! I know some women want natural birth, but I was terrified and wanted as little pain as possible. I delivered a healthy baby girl via c-section on 5/20/2004. The labor was almost 3 days and was miserable...but my platelets stayed above the line.
Over the next few years, they decreased slowly. By the time I was pregnant again in 2006, they were about 90k - 100k as my "normal". Again, delivered c-section with no issues.
3 years later, my "normal" is 50-60k. I had my gallbladder removed in 2008 and was given WinRho via an IV and this boosted my counts to 300k! But, it only lasted a few weeks. Predisone was tested and actually decreased my counts, which baffled the doctors.
My ITP is actually odd too. Most people with ITP have antibodies in their blood that specifically attack their platelets. Doctors have tested me for these antibodies and they weren't there. My general PCP thinks this means I do not *officially* have ITP. But, my hematologist says that I don't need to have the antibodies present to have ITP. He is solid on his diagnosis. I also had "young" platelets in my blood. They say this means that the platelets are being destroyed before they mature.
Well, the gallbladder removal was quite interesting too. But, more on that later. In summary, I have several issues that I am hoping the chiropractor can help me with.
I will write more tomorrow after the visit!
But, this is not stress. Quite honestly, outside of being in pain so often, I have very little stress. My body feeling ages beyond my true years is the only stress I really have. I am happy in my marriage, thrilled and thankful for my children, and I really like my job. Of course, I wish we had more money and all that stuff, but it doesn't consume my thoughts.
So, I am seeing a chiroprator on Friday, at the recommendation of a friend. It's sort of a last resort and ditch effort to reclaim my body. I am so sick of being tired and sore. The fibro has gotten worse, not better. Well, for the most part. I have been on Effexor for quite awhile now and it doesn't really seem to do a whole lot. I am not depressed, so maybe it does help there. One very noticible thing though, I have no more jaw pain. When I was 1st diagnosed with fibro, I had an aching jaw almost all of the time. My dentist said I had classic TMJ and offered some things I could do. But, nothing worked except this Effexor. When I started that, the jaw pain went away completely. Wierd! But, hey, I'll take it.
I struggle with exercise. I love to exercise and go to the gym, etc. But, lately, I find that the days following even small workouts leave me in a great deal of pain. We had bought a wii fit and I thought those "light" workouts would be perfect. The yoga didn't cause much pain, but it isn't like being in a real yoga class. But, I bought the wii active and was doing some boxing moves and kicks. I really enjoyed it! But, the next day I could hardly walk. I know I was using some muscles that haven't been used in a long time, but the amount of soreness exceeded what would be considered normal. I wasn't just sore. I could barely walk. This was an awakening to the fact that fibro is interferring with my life.
A week or so later I wanted to do the wii active again, but didn't because I was leaving for a business trip the following day. I knew I couldn't handle walking thru the airport with such sore legs. I have read that managing fibro is all about choices. Well, that just SUCKS. So, I have to choose to slow down when I want to live my life to the fullest? I have to choose not to exercise so I can do basic activities the next day? That is not a solution for me. I don't want to choose not to do things that I enjoy.
While I was on the business trip, I realized just how much this affects my life. I was in bed early each night and exhausted at the end of the day (even though I was sitting in conferences most of the day). I was traveling with my boss who is about 20 years older than me and I couldn't keep up with her level of energy. This was extremely frustrating for me.
I also came down with strep throat again. This is when a friend asked me if I considered a chiropractor. I had considered it, but really never followed through. My husband and I have discussed massage therapy, but I am actually afraid a massage will hurt! Sometimes the slightest pressure on my shoulders is very painful. I will go to the chiropractor and see if she can help. At this point, I feel like I have nothing to lose. I want my body back.
I need to make a list of all my ailments (long list) and maybe she can connect them. It seems like when I fix one thing, another breaks. I wonder if this could help my ITP too?
ITP. This is an auto-immune disease that I was diagnosed with in about 2000 or 2001. My body seems to destroy my platelets and the doctors don't really know why. My counts do not typically get dangerously low. When I was first diagnosed, the count was about 110k. For a normal person, platelet counts are 250k - 450k. At 110k, I was not at risk for much of anything, but they just kept an eye on it because it wasn't normal. I wasn't treated for it, but just bruised easily. I didn't get concerned with this again until 2004 when I was pregnant with my 1st child. Sometimes women develop ITP when they are pregnant and then their counts are normal again after birth. Well, interestingly enough, my counts went up to about 125k.
If your counts are below 100k, doctors are hesitant to give you an epidural. That was really my biggest concern, making sure I could deliver without pain! I know some women want natural birth, but I was terrified and wanted as little pain as possible. I delivered a healthy baby girl via c-section on 5/20/2004. The labor was almost 3 days and was miserable...but my platelets stayed above the line.
Over the next few years, they decreased slowly. By the time I was pregnant again in 2006, they were about 90k - 100k as my "normal". Again, delivered c-section with no issues.
3 years later, my "normal" is 50-60k. I had my gallbladder removed in 2008 and was given WinRho via an IV and this boosted my counts to 300k! But, it only lasted a few weeks. Predisone was tested and actually decreased my counts, which baffled the doctors.
My ITP is actually odd too. Most people with ITP have antibodies in their blood that specifically attack their platelets. Doctors have tested me for these antibodies and they weren't there. My general PCP thinks this means I do not *officially* have ITP. But, my hematologist says that I don't need to have the antibodies present to have ITP. He is solid on his diagnosis. I also had "young" platelets in my blood. They say this means that the platelets are being destroyed before they mature.
Well, the gallbladder removal was quite interesting too. But, more on that later. In summary, I have several issues that I am hoping the chiropractor can help me with.
I will write more tomorrow after the visit!
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