Good Morning friends and followers....I have moved over to another blog.
I am now using Me and My EDS shadow.
http://meandmyedsshadow.blogspot.com/
I will be sharing my latest shoulder surgery tomorrow.
My Ehlers-Danlos Syndrome Adventure
Having just been diagnosed with Ehlers-Dansol Syndrome, I am in need of an outlet to share my ups and downs. This may not be a daily blog, but I want to share. I am 34 yrs old and have been told I will live with chronic pain and chance of joint dislocation for the rest of my life.
02 April 2015
08 July 2013
Wow, life has changed so much since I posted here last.
I am now living in Gulf Breeze, Florida and I love it. The moisture here in the air seems to help me so much. I have enjoyed spending time at the beach floating in the salt water. It is amazing how great it is not to have any pressure on your joints.
I also have to say that I have found the most amazing doctors here. When I lived in Colorado Springs, I had to continually educate my doctors on EDS. Here, everyone seems to know exactly what I am talking about with out any explanation. The Andrew's Institute has an amazing team of doctors. I love my pain doctor. He is so understanding and has got me on Cymbalta and I am feeling so much better. I am out there and doing things again.
We bought a house here that is a total do-it-yourselfer. My husband does most of the work, but I have been able to help do drywall and painting. Next is plumbing and more. I might actually get to try my hand at laminate flooring. I just hope this all gets done before our lease is up.
I am also embarking on the Close To My Heart business again. I love scrapbooking so much and these products are so awesome. This is going to be a busy month...I ordered lots of the new stuff and I am going to be part of several new artwork swaps with other consultants. I may post some of the artwork here when it is all done. Wish me luck.
Life is looking up in the Sunshine state, despite all the rain!
I am now living in Gulf Breeze, Florida and I love it. The moisture here in the air seems to help me so much. I have enjoyed spending time at the beach floating in the salt water. It is amazing how great it is not to have any pressure on your joints.
I also have to say that I have found the most amazing doctors here. When I lived in Colorado Springs, I had to continually educate my doctors on EDS. Here, everyone seems to know exactly what I am talking about with out any explanation. The Andrew's Institute has an amazing team of doctors. I love my pain doctor. He is so understanding and has got me on Cymbalta and I am feeling so much better. I am out there and doing things again.
We bought a house here that is a total do-it-yourselfer. My husband does most of the work, but I have been able to help do drywall and painting. Next is plumbing and more. I might actually get to try my hand at laminate flooring. I just hope this all gets done before our lease is up.
I am also embarking on the Close To My Heart business again. I love scrapbooking so much and these products are so awesome. This is going to be a busy month...I ordered lots of the new stuff and I am going to be part of several new artwork swaps with other consultants. I may post some of the artwork here when it is all done. Wish me luck.
Life is looking up in the Sunshine state, despite all the rain!
27 October 2011
Frozen Shoulder
I have to wonder.....
This morning I woke up with my shoulder that I just had surgery on completely frozen in one place. I realized that it was in the 20s outside. I have to wonder if the weather has something to do with it.
I know that people talk about the weather effecting their joints and how they feel. I have felt this way before, but this was way over the top. I could not believe how bad it felt. I took meds.....and feel a bit better now.
The meds are a whole different matter. I took my regular pain med and a muscle relaxer to combat the pain. This is the first muscle relaxer since my surgery. I am not sure it was a good idea. The pain actually got worse as the pec muscle loosened up. Grrr
The weather is suppose to be warmer tomorrow. I am hoping to have more movement......at least what I had 2 days ago. I am coming to the realization that I may never have full motion again and that what motion I do get will take a long time to get. I can move my arm 90 degrees up in the front with assistance, but not out to the side at all. I still have not strength in my arm. A can of soda is about all I can lift....if that. I know it is going to take a long time, but it is so frustrating. I want my life back......so many things I want to do that I cannot do. My dad says I should write a book now that I can write again. Maybe that is an option. Only time will tell.
This morning I woke up with my shoulder that I just had surgery on completely frozen in one place. I realized that it was in the 20s outside. I have to wonder if the weather has something to do with it.
I know that people talk about the weather effecting their joints and how they feel. I have felt this way before, but this was way over the top. I could not believe how bad it felt. I took meds.....and feel a bit better now.
The meds are a whole different matter. I took my regular pain med and a muscle relaxer to combat the pain. This is the first muscle relaxer since my surgery. I am not sure it was a good idea. The pain actually got worse as the pec muscle loosened up. Grrr
The weather is suppose to be warmer tomorrow. I am hoping to have more movement......at least what I had 2 days ago. I am coming to the realization that I may never have full motion again and that what motion I do get will take a long time to get. I can move my arm 90 degrees up in the front with assistance, but not out to the side at all. I still have not strength in my arm. A can of soda is about all I can lift....if that. I know it is going to take a long time, but it is so frustrating. I want my life back......so many things I want to do that I cannot do. My dad says I should write a book now that I can write again. Maybe that is an option. Only time will tell.
26 October 2011
Still Here
I am still here....still not able to do a whole lot.
I am starting to have more mobility in my arm, but no strength. I went to PT yesterday and had a different guy. I don't want him ever again. Michael (my usual PT guy) was out and Daryl had to take care of me. OUCH. I am not sure if he knows about EDS. He really pushed the limits and pushed them hard. Michael is usually gentle and does not push past when I say ouch. But Daryl did and I paid for it yesterday, last night and I am still paying today. Would it be bad if I asked only to see Michael? It is just the two of them and I don't want to make it weird.
I cannot do a whole lot, but some things are getting easier. I can dress myself, but not undress myself (my husband likes that....he gets to help LOL). I did manage to cook a meal or two, but cannot get things out of the oven.
While I am making improvement each day, it is still hard on the mind....I stress because I want to do so much. It is extremely frustrating. There is so much I want to do that I just don't have the strength or dexterity to do. One of my passions is scrapbooking and I lead a stamp club each month. I have not been able to get ready for the next one or the Christmas card workshop I am doing in November. I am going to have to get some help. Which is hard too, because I like things done the way I want them and it is hard to tell others exactly how you want it without feeling bossy. I am able to hold a book now...so at least I am getting some reading done. Since I have better hand function, I think I will start crocheting this week.
Trying to keep positive. Wish me luck on that front. It will take time to get back to "normal" and I need to keep that in mind.
I am starting to have more mobility in my arm, but no strength. I went to PT yesterday and had a different guy. I don't want him ever again. Michael (my usual PT guy) was out and Daryl had to take care of me. OUCH. I am not sure if he knows about EDS. He really pushed the limits and pushed them hard. Michael is usually gentle and does not push past when I say ouch. But Daryl did and I paid for it yesterday, last night and I am still paying today. Would it be bad if I asked only to see Michael? It is just the two of them and I don't want to make it weird.
I cannot do a whole lot, but some things are getting easier. I can dress myself, but not undress myself (my husband likes that....he gets to help LOL). I did manage to cook a meal or two, but cannot get things out of the oven.
While I am making improvement each day, it is still hard on the mind....I stress because I want to do so much. It is extremely frustrating. There is so much I want to do that I just don't have the strength or dexterity to do. One of my passions is scrapbooking and I lead a stamp club each month. I have not been able to get ready for the next one or the Christmas card workshop I am doing in November. I am going to have to get some help. Which is hard too, because I like things done the way I want them and it is hard to tell others exactly how you want it without feeling bossy. I am able to hold a book now...so at least I am getting some reading done. Since I have better hand function, I think I will start crocheting this week.
Trying to keep positive. Wish me luck on that front. It will take time to get back to "normal" and I need to keep that in mind.
11 October 2011
Long Night
I know there are ups and downs, but this sucks. Yesterday things were so good. I am sure that is why I hurt today. I bet I over did it doing things to take care of the boys. I really want to help them do this and not have them grow up too fast having to take care of mommy. But having done so much yesterday I am going to have to have them help me more today.
I did not sleep well last night because of the pain. Not sure how I can find some way to actually be comfortable and get some rest. I do sleep better with pain meds on board, but having two boys at home by myself makes it hard to take pain meds. I am sure there at people who do it, but I just cannot bring myself to do it. What if I take it and then something happens to one of the boys? I would not be able to drive. While I feel that they don't impair my thoughts, what if I am wrong? I cannot imagine making the wrong decision in with regards to them. There is always that chance.
Today is a lay low day. The boys are still running low fevers so I decided to keep them home today. It makes my life a little easier not having to take them out. A major reason for not taking Ben out is because I do not need him to get sicker...he is on the verge of a hospital visit and I am trying to keep it away. The longer I quarantine us all, the less like Ben is to get something that pushes us over the edge on that front. I am not sure I could handle that.....arm not working right, Ben in the hospital and Matt not home. Yeah, could not do it. I know my limitations.
I did not sleep well last night because of the pain. Not sure how I can find some way to actually be comfortable and get some rest. I do sleep better with pain meds on board, but having two boys at home by myself makes it hard to take pain meds. I am sure there at people who do it, but I just cannot bring myself to do it. What if I take it and then something happens to one of the boys? I would not be able to drive. While I feel that they don't impair my thoughts, what if I am wrong? I cannot imagine making the wrong decision in with regards to them. There is always that chance.
Today is a lay low day. The boys are still running low fevers so I decided to keep them home today. It makes my life a little easier not having to take them out. A major reason for not taking Ben out is because I do not need him to get sicker...he is on the verge of a hospital visit and I am trying to keep it away. The longer I quarantine us all, the less like Ben is to get something that pushes us over the edge on that front. I am not sure I could handle that.....arm not working right, Ben in the hospital and Matt not home. Yeah, could not do it. I know my limitations.
10 October 2011
Pain and Illiness
I knew I was on the verge of a cold last week. I knew it was coming....I kept thinking this sucks. My arm/shoulder really hurts and now I am getting sick. I don't know if that is true.
I am wondering if my shoulder was hurting worse because I was getting sick. Through this weekend while I have battled the hot flashes, cold chills and aches.....I realized that all of these things started in my shoulder/arm. Is that weird? Is it kinda like feeling the weather?
I guess it could have been the weather too.....we had a huge cold front roll through this weekend. We had our first frost of the year as well as a few flakes. Those things hurt me too...I just don't know.
So, I know that I am feeling things in my shoulder/arm more than the rest of my body. If it is the cold I am fighting or the cold weather that came through, I will never know. What I do know is that this weekend has taken it out of me. My shoulder hurts and my chest hurts too.
I think I am on the mend....I woke up this morning with less pain than the last week. I am not sure if it is because the cold is subsiding or the weather warming up again.
My dear friends with EDS......if you have any ideas, please let me know so I am prepared for the future. I might not be able to avoid all of the symptoms, but I can prepare for them at least.
I am wondering if my shoulder was hurting worse because I was getting sick. Through this weekend while I have battled the hot flashes, cold chills and aches.....I realized that all of these things started in my shoulder/arm. Is that weird? Is it kinda like feeling the weather?
I guess it could have been the weather too.....we had a huge cold front roll through this weekend. We had our first frost of the year as well as a few flakes. Those things hurt me too...I just don't know.
So, I know that I am feeling things in my shoulder/arm more than the rest of my body. If it is the cold I am fighting or the cold weather that came through, I will never know. What I do know is that this weekend has taken it out of me. My shoulder hurts and my chest hurts too.
I think I am on the mend....I woke up this morning with less pain than the last week. I am not sure if it is because the cold is subsiding or the weather warming up again.
My dear friends with EDS......if you have any ideas, please let me know so I am prepared for the future. I might not be able to avoid all of the symptoms, but I can prepare for them at least.
07 October 2011
I can't do that
Matt has had to help me with so many things....I have to tell a funny though. It was the second or third night and Matt made an awesome dinner with chicken breasts and rice. I was not feeling well when it was dinner time, so I waited and ate after the kids went to bed. He warmed it up and brought it out to me and set it on my tray with a knife and a fork. Seriously....the chicken breast was whole and he gave me a knife to cut it up. My mom and I broke out in laughter and Matt just looked and us and said, "What?" It was kinda funny. He has really had to learn to help and try to understand the things I cannot do.
He is amazing. It is slowly getting easier on all of us as I am getting better and have more movement. It is still very painful for me, but better.
He is amazing. It is slowly getting easier on all of us as I am getting better and have more movement. It is still very painful for me, but better.
Subscribe to:
Posts (Atom)