It is the beginning of what promises to be another long day. Matt has wrestling today....all day. I am not feeling well.....my throat hurts, head is stuffy and my chest is getting filled up too.
Good news is that nothing else really hurts today. I am hoping to get my scrap page done for next weeks stamp club. It makes me happy to have these type of things to do.
06 March 2010
05 March 2010
Braces
I went for my brace fittings today....that was a joke. We will have to see how they turn out. The guys did not really seem to know what he was doing....the lifts might turn out well. He did take a full impression of my foot.
My knees are another story....he took one measurement. That was it. I am hoping it gets done properly.
The SI belt will be interesting too....he went on google to find one.
Grrr.
My knees are another story....he took one measurement. That was it. I am hoping it gets done properly.
The SI belt will be interesting too....he went on google to find one.
Grrr.
04 March 2010
Better
I am feeling better tonight, maybe not physically, but mentally. I am happy....I have just found myself. I realize that I cannot let this stop me from living my life.
I am going to keep playing with my kids and enjoy every moment of it. I cannot live my life afraid of dislocating something. It is bound to happen no matter what I do, so why not take the time I have to enjoy life. I love my kids and I don't want them to feel like their mom is missing in their lives. I can do things, it hurts and I could get hurt even more, but I am willing to take that chance to "live" my life.
I hate to admit this to anyone outside of my family, but I have slept on the couch for a little over a month now. It has just been more comfortable than sleeping in the bed. I have been able to sleep a little better, without as much pain, but it is lonely. I miss my husband. I miss being in the same bed with him. I have decided that I am going to take a pain pill before bed and then again when I get up. It will be nice to be in the same bed with my hubby. I am looking forward to it. I have no problem taking the meds when I need them. I was trying to not use them, but now that I know nothing is going to change. I am going to use the meds to make my life better. I can do that.
So, I spent the day playing with my boys, not dwelling on the bad. I am happy, sore, but happy. The kids are in bed, survivor is on.....the only way to make this better would be to have Matt home and not at some meeting.
I will continue to post my pain level....it is kind of my outlet. I can whine here and try not to whine at other places in my life. Maybe I should get one of those purple bracelets that were so popular about not complaining.
Pain Level: 4-5 right SI joint, right shoulder and thumbs.
I am going to keep playing with my kids and enjoy every moment of it. I cannot live my life afraid of dislocating something. It is bound to happen no matter what I do, so why not take the time I have to enjoy life. I love my kids and I don't want them to feel like their mom is missing in their lives. I can do things, it hurts and I could get hurt even more, but I am willing to take that chance to "live" my life.
I hate to admit this to anyone outside of my family, but I have slept on the couch for a little over a month now. It has just been more comfortable than sleeping in the bed. I have been able to sleep a little better, without as much pain, but it is lonely. I miss my husband. I miss being in the same bed with him. I have decided that I am going to take a pain pill before bed and then again when I get up. It will be nice to be in the same bed with my hubby. I am looking forward to it. I have no problem taking the meds when I need them. I was trying to not use them, but now that I know nothing is going to change. I am going to use the meds to make my life better. I can do that.
So, I spent the day playing with my boys, not dwelling on the bad. I am happy, sore, but happy. The kids are in bed, survivor is on.....the only way to make this better would be to have Matt home and not at some meeting.
I will continue to post my pain level....it is kind of my outlet. I can whine here and try not to whine at other places in my life. Maybe I should get one of those purple bracelets that were so popular about not complaining.
Pain Level: 4-5 right SI joint, right shoulder and thumbs.
Damn
I has been a long couple of weeks. Everyone is feeling better now and that makes me happy. Kids are being kids and driving me nuts sometimes, but I would not trade them for the world.
I went to see Dr. Rose yesterday and nothing good came of it. The visit was actually kind of depressing. I found out that the PT I have been doing is actually doing more harm than good. My SI joint is worse than it has ever been. The ligament is so stretched out that it will never be normal again. Sucks. She also hurt me by stretching the SI joint to see how much damage has been done. PAINFUL. I am still not pain free this morning.
I asked her if I could see a geneticist. There is not one on the VA payroll.....go figure. So, now I have to wait to see if they will out source such a thing. I am guessing no. We will just have to wait and see. I am hoping they do.....it would be nice to see someone who has seen EDS in a person before and not just read about it.
My meds have not been changed, just increased. The night pain in my legs is the worst. She told me to just take my sleeping pill earlier in the evening so by the time I am ready to sleep that I am sleepy enough to go right to sleep and not feel the pain. Ha, we will have to see if that works....I don't believe it.
I am back to where I started with no hope of improvement.....it is a bit depressing. I am trying hard to get myself in a better frame of mind......I am not sure what it will take. I think I need to sulk and get it out. I am resigning myself to the way this will be. I feel better already, now that I have written about it. Seems so silly to be upset about pain when there are so many others who are worse off than I am.
Having said that there are those worse off than I am, I am still going to take advantage of all that is available to me. I have filed for more compensation from the Army (they made my condition worse) and I filed for Social Security disability. I know it sounds funny.....I am 34 years old and filing for Social Security. It still bothers me a little, but the reality is that with the pain and the ligaments stretching more each day, I will never be able to work a real job again. So, with that said, I filed and we will see what happens. I would be nice to be able to provide for my family even though I cannot work to do it. I saw my counselor the other day and she reminded me that I am a person with a disability and I deserve it. (It is still taking some getting use to)
Friday I go to get my knee braces fitted along with a SI belt and shoe inserts. The knee braces will help to keep my knees in place, the SI belt too. The SI belt should prevent the joint and ligament from getting worse. It is kinda like wearing a gurtle for the rest of my life. At least it will be trimming and I will always look skinny. The shoe inserts are to make sure that my back is supported properly. Hopefully these things will help.
Monday I go to Occupational Therapy for arm and hand braces. I talked to the guy while I was there yesterday and he is talking fingers, hands, wrists and elbows. He asked how much mobility I need....I lauged and said that I have a 2 and 4 year old....what do you think? So, he is going to try to give me some support with mobility for the day time and then braces it all for the night (I sleep with my arms all curled up). Matt says I seem to hurt myself more at night than during the day. I guess that is true since I have no control over what I do at night. At least during the day I can be careful. Good part of all of it is that it is all removable. I like that idea. I can use them all when I need them and not use them when I want to do something. Example, if I want to play with the boys I can take them off to play......probably not a good example since that is when I should be using them. We will have to see how it all works out. Sounds like I am going to be robo-mom......LOL.
Pain Level: 4 -my SI joint is still sore from being manipulated yesterday.
I went to see Dr. Rose yesterday and nothing good came of it. The visit was actually kind of depressing. I found out that the PT I have been doing is actually doing more harm than good. My SI joint is worse than it has ever been. The ligament is so stretched out that it will never be normal again. Sucks. She also hurt me by stretching the SI joint to see how much damage has been done. PAINFUL. I am still not pain free this morning.
I asked her if I could see a geneticist. There is not one on the VA payroll.....go figure. So, now I have to wait to see if they will out source such a thing. I am guessing no. We will just have to wait and see. I am hoping they do.....it would be nice to see someone who has seen EDS in a person before and not just read about it.
My meds have not been changed, just increased. The night pain in my legs is the worst. She told me to just take my sleeping pill earlier in the evening so by the time I am ready to sleep that I am sleepy enough to go right to sleep and not feel the pain. Ha, we will have to see if that works....I don't believe it.
I am back to where I started with no hope of improvement.....it is a bit depressing. I am trying hard to get myself in a better frame of mind......I am not sure what it will take. I think I need to sulk and get it out. I am resigning myself to the way this will be. I feel better already, now that I have written about it. Seems so silly to be upset about pain when there are so many others who are worse off than I am.
Having said that there are those worse off than I am, I am still going to take advantage of all that is available to me. I have filed for more compensation from the Army (they made my condition worse) and I filed for Social Security disability. I know it sounds funny.....I am 34 years old and filing for Social Security. It still bothers me a little, but the reality is that with the pain and the ligaments stretching more each day, I will never be able to work a real job again. So, with that said, I filed and we will see what happens. I would be nice to be able to provide for my family even though I cannot work to do it. I saw my counselor the other day and she reminded me that I am a person with a disability and I deserve it. (It is still taking some getting use to)
Friday I go to get my knee braces fitted along with a SI belt and shoe inserts. The knee braces will help to keep my knees in place, the SI belt too. The SI belt should prevent the joint and ligament from getting worse. It is kinda like wearing a gurtle for the rest of my life. At least it will be trimming and I will always look skinny. The shoe inserts are to make sure that my back is supported properly. Hopefully these things will help.
Monday I go to Occupational Therapy for arm and hand braces. I talked to the guy while I was there yesterday and he is talking fingers, hands, wrists and elbows. He asked how much mobility I need....I lauged and said that I have a 2 and 4 year old....what do you think? So, he is going to try to give me some support with mobility for the day time and then braces it all for the night (I sleep with my arms all curled up). Matt says I seem to hurt myself more at night than during the day. I guess that is true since I have no control over what I do at night. At least during the day I can be careful. Good part of all of it is that it is all removable. I like that idea. I can use them all when I need them and not use them when I want to do something. Example, if I want to play with the boys I can take them off to play......probably not a good example since that is when I should be using them. We will have to see how it all works out. Sounds like I am going to be robo-mom......LOL.
Pain Level: 4 -my SI joint is still sore from being manipulated yesterday.
10 February 2010
Long week
I have not posted lately and I feel bad about it. Unfortunately for me, we have been in the hospital with Ben (my 2 yr old) for the last three days. We will be here for several more. He has RSV and it is taking forever to get him back to breathing well.
It has been several long nights and it is going to be several more. My poor little baby. I will post more tomorrow. He is finally sleeping for the night and I am hoping to get some myself.
It has been several long nights and it is going to be several more. My poor little baby. I will post more tomorrow. He is finally sleeping for the night and I am hoping to get some myself.
04 February 2010
PT
So, I went to physical therapy this morning. Wow, I am so not normal. I found out that I have been relying on muscles that should not be engaged all the time. Debbie worked hard with me to start engaging my core muscles properly. All the muscles that I am suppose to use are not used at all. It was amazing how weak those muscles are. It was also amazing how much pain that can cause. I can barely do anything. She gave me less than basics. I do not even have the muscle to do basic pilates. I cannot believe it. She was very careful not to hurt my SI joint too much, but reality is that you cannot work the muscle to fix the problem without aggravating it a bit. I am super sore today and absolutely exhausted. I slept for 2 hours while the kids did today. My SI joint, my knee, and my right shoulder are sore. Debbie gave me some exercises to do every day. 5 exercises 5 reps once each day. Doing them properly, that is all my muscles can do without serious fatiguing the muscle. I am going to be going to the clinic 2 times a week for several weeks. I am hoping that might be enough to get me started on a better way of life.
I am pleased that Debbie knows what she is doing. We did our work out and then she was able to manipulate my SI joint to take some of the pressure off of it. Amazing what she can do. She was full of information and helpful tips. She even gave me a workout ball to get the kids sitting on to build their core muscles to keep them from having problems developing.
I cannot say enough about how things went. I am pleased, but cautious. I hurt, but in a good way, I think. I will know tomorrow - depending on how I sleep and how things feel.
I feel like I should write more...maybe it is because I have not met my word (speaking) quota for the day. LOL.
I am very tired and sore...once the kids go down I am going to take a pain killer and rest. Matt is out at a Drupal computer meeting tonight. Looking for some good job contacts. It is a time for wait and see.
Thinking about changing my diet too, any ideas on what might be a good diet to help inflammation? Just a generally healthy diet would be good too.
Pain level - 6-7 muscles are sore and joints ache.
I am pleased that Debbie knows what she is doing. We did our work out and then she was able to manipulate my SI joint to take some of the pressure off of it. Amazing what she can do. She was full of information and helpful tips. She even gave me a workout ball to get the kids sitting on to build their core muscles to keep them from having problems developing.
I cannot say enough about how things went. I am pleased, but cautious. I hurt, but in a good way, I think. I will know tomorrow - depending on how I sleep and how things feel.
I feel like I should write more...maybe it is because I have not met my word (speaking) quota for the day. LOL.
I am very tired and sore...once the kids go down I am going to take a pain killer and rest. Matt is out at a Drupal computer meeting tonight. Looking for some good job contacts. It is a time for wait and see.
Thinking about changing my diet too, any ideas on what might be a good diet to help inflammation? Just a generally healthy diet would be good too.
Pain level - 6-7 muscles are sore and joints ache.
03 February 2010
Lots, Lots and Lots
So much has happened since I last posted. Still not sure the PT office knows what they are doing. I am scheduled for pool therapy next week and the week after. I start actually therapy tomorrow AM at 730. I am really nervous, almost scared. My knee is hurting a bit tonight. Really hope they do not hurt me even more. I am praying that they have a clue and don't break something. Can I say again that I am scared? I am.
I did see a physiotherapist last week. She is the first person I have met who actually seems to know what she is talking about, which is good and bad. She gave me lots of information, but scared me all the same. Nothing is positive looking, but she did not count me out either. I cannot stop what is happening to me. I will always have loose ligaments, but I can work on my muscles. It looks like once the muscles in my body are retrained, I won't be relying on my ligaments so much. The hope is that I will be able to keep myself together and moving for a long time to come. Basically, I will be retraining all the muscles in my body. It will be lots of work. My muscles have been working in the wrong way because they have been working improperly. It sounds like a painful proposition and long term work. But, I am really hoping that this might work. I know that I will not be running again or doing the iron man any time in the future, but I can still be active. I am sure that there will be other sports that are going to be out of the question, but I am looking forward to finding out which ones I can still do.
I am finding it harder and harder to deal with this on my own. My husband does the best he can, but does not understand daily pain. My family is all trying to be there, but really....no one can understand until they have been there. My poor kiddos think mommy is super fragile and are terrified they might hurt me. We do play some, but any time I flinch or squirm, they jump off and say they are sorry. It is heart breaking. I need to get my head around this and try to make it normal, instead of letting it ruin my life. I am really hoping that therapy will help. I am going to see my psych people at the end of the month too.
I am trying to find positive in all of this. I am going to be filing a claim with the Army for the damage they did to my joints, even further than what they would have been. Good news is that when the physiotherapist saw me last week and ordered some things in the computer----there was a code for Ehlers-Danlos. That means that they have the code and can and will compensate me for it.
I should also be getting braces for many joints soon. I know that my knees will be braced first and then possibly my hands. I am getting an SI joint belt, it is suppose to help me keep that joint in place so I can retrain the ones around it. I am also going to see an occupational therapist because I am slowing using strength in it. I have asked my physiotherapist about it and she told me that it is basically just getting worn out. I have stretched out most of the ligaments and will not be able to get that strength back. Sucks, but hopefully they will be able to help me figure out how to use what I have and keep it from getting worse.
We will have to wait and see.....I should be used to it having been in the military, "Hurry up and wait."
Pain Level - 3 right knee
Keep your fingers crossed that it is not much worse tomorrow.
I did see a physiotherapist last week. She is the first person I have met who actually seems to know what she is talking about, which is good and bad. She gave me lots of information, but scared me all the same. Nothing is positive looking, but she did not count me out either. I cannot stop what is happening to me. I will always have loose ligaments, but I can work on my muscles. It looks like once the muscles in my body are retrained, I won't be relying on my ligaments so much. The hope is that I will be able to keep myself together and moving for a long time to come. Basically, I will be retraining all the muscles in my body. It will be lots of work. My muscles have been working in the wrong way because they have been working improperly. It sounds like a painful proposition and long term work. But, I am really hoping that this might work. I know that I will not be running again or doing the iron man any time in the future, but I can still be active. I am sure that there will be other sports that are going to be out of the question, but I am looking forward to finding out which ones I can still do.
I am finding it harder and harder to deal with this on my own. My husband does the best he can, but does not understand daily pain. My family is all trying to be there, but really....no one can understand until they have been there. My poor kiddos think mommy is super fragile and are terrified they might hurt me. We do play some, but any time I flinch or squirm, they jump off and say they are sorry. It is heart breaking. I need to get my head around this and try to make it normal, instead of letting it ruin my life. I am really hoping that therapy will help. I am going to see my psych people at the end of the month too.
I am trying to find positive in all of this. I am going to be filing a claim with the Army for the damage they did to my joints, even further than what they would have been. Good news is that when the physiotherapist saw me last week and ordered some things in the computer----there was a code for Ehlers-Danlos. That means that they have the code and can and will compensate me for it.
I should also be getting braces for many joints soon. I know that my knees will be braced first and then possibly my hands. I am getting an SI joint belt, it is suppose to help me keep that joint in place so I can retrain the ones around it. I am also going to see an occupational therapist because I am slowing using strength in it. I have asked my physiotherapist about it and she told me that it is basically just getting worn out. I have stretched out most of the ligaments and will not be able to get that strength back. Sucks, but hopefully they will be able to help me figure out how to use what I have and keep it from getting worse.
We will have to wait and see.....I should be used to it having been in the military, "Hurry up and wait."
Pain Level - 3 right knee
Keep your fingers crossed that it is not much worse tomorrow.
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