Thursday, September 13, 2007
The Myositis Association
The Myositis Association: http://myositis.org/
This is a fantastic information and support site that anyone that has Myositis or wants to know more about our disease must visit. I can not tell you how much this site and the message boards there helped me when I first learned I had Dermatomyositis and it continues to do so today. It is a site I visit several times a day.
The people on the message boards are like family. We each live with the disease and the problems it brings us each day. A section is provided for JDM, IBM, DM/PM and General. You can ask them ANY thing and you will get a real life answer.
You do not have to join the TMA to view their information or to particpate in their message boards, but joining the TMA is inexpensive and will provide you with even further resources as a patient. Most of the money on a full membership goes to research. For me the highlight of joining was that I recieved accesss to a list of others with the disease in my general location. Each area has a Keep in Touch (KIT) leader that host get togethers. I finally wasn't all by myself with this disease!
There is so much information...too much to list here. You just must check them out!
Partial List of Quick Facts about TMA:
Interacts with nearly 20,000 myositis patients and their families and friends.
Hosts a highly visible website that has more than 320,000 hits annually.
Acts as the forum for consensus and partnering among myositis researchers worldwide.
Provides nearly 5,000 physicians with patient information materials and referral materials.
Presents the latest news on myositis treatments, research and coping skills by way of its Annual Conference, bringing together more than 300 patients, families and experts to learn from specialists and meet with people who share common concerns.
Offers 65 support groups in the U.S. and overseas for patients and their caregivers to exchange information and share experiences about coping with myositis.
This is a fantastic information and support site that anyone that has Myositis or wants to know more about our disease must visit. I can not tell you how much this site and the message boards there helped me when I first learned I had Dermatomyositis and it continues to do so today. It is a site I visit several times a day.
The people on the message boards are like family. We each live with the disease and the problems it brings us each day. A section is provided for JDM, IBM, DM/PM and General. You can ask them ANY thing and you will get a real life answer.
You do not have to join the TMA to view their information or to particpate in their message boards, but joining the TMA is inexpensive and will provide you with even further resources as a patient. Most of the money on a full membership goes to research. For me the highlight of joining was that I recieved accesss to a list of others with the disease in my general location. Each area has a Keep in Touch (KIT) leader that host get togethers. I finally wasn't all by myself with this disease!
There is so much information...too much to list here. You just must check them out!
Partial List of Quick Facts about TMA:
Interacts with nearly 20,000 myositis patients and their families and friends.
Hosts a highly visible website that has more than 320,000 hits annually.
Acts as the forum for consensus and partnering among myositis researchers worldwide.
Provides nearly 5,000 physicians with patient information materials and referral materials.
Presents the latest news on myositis treatments, research and coping skills by way of its Annual Conference, bringing together more than 300 patients, families and experts to learn from specialists and meet with people who share common concerns.
Offers 65 support groups in the U.S. and overseas for patients and their caregivers to exchange information and share experiences about coping with myositis.
Wednesday, August 15, 2007
The Mall
I went to the Mall by myself for the first time in about 18 months last week! Ed needed a replacement jacket from Penney's in the men's department. I was able to find a parking spot right in front and walked all the way to the up escalator without any problems. I did get a little tired and had to stop and drool on the jewelry counter for a moment. I got the jacket and got back down the escalator and was looking forward to walking out into the mall area and sitting on the wooden park benches. To my surprise they had all been changed to lovely, cushy, sink into me couches and chairs-----which I can get in, but not out of!! Luckily I found a Starbucks with hard back kitchen chairs! The chairs enable me to rest so much that I was able to walk down to Macy's, but I found that I had to rest at the makeup counter in one of their high chairs. The ladies there were very attentive and I did manage the strength to pick out a few necessities of life before returning back up the hall via a shoe store! It was great to be able to do that, even if it did exhaust me...oh yes, I was walking, with NO cane!!
I have continued to wean down on my Myositis medicnes and now only take one Imuran a day until my next Rheumy visit. I do believe I am better, but I still hurt. The fatigue is terrible. I am not the way I use to be. But this is so much better than last fall!!
I have continued to wean down on my Myositis medicnes and now only take one Imuran a day until my next Rheumy visit. I do believe I am better, but I still hurt. The fatigue is terrible. I am not the way I use to be. But this is so much better than last fall!!
Saturday, July 21, 2007
Remission? Maybe....
Finally a few answers. My brain MRI was normal and my CPK blood work was within normal limits also. My Rheumy actually thinks I may be in a remission and has starting cutting down on my meds. Now that is some wonderful news. I have had such an up and down emotional week that I really needed some good news. Sure wish I felt like I was in a remission. I am just so tired, and I hurt, but I believe a lot of it may be the Fibromayalgia. I am so blessed to have had everyone praying for me and I know that it is working. Thanks everyone!
Tuesday, July 10, 2007
A Dreary Day Here
I knew it was going to be a bad one. We came in home about midnight last night and under the heavy cloudy skies I could see that.............the neighbors had cut their grass!!! TWO DAYS EARLY! And now even more rain is in the forcast. We look like the hillbillies of the neighborhood. I guess it could be worse.
Still no word on my brain MRI, nor my CK bloodwork. I try not to think of it, but with the diagnostic mamogram looming over me as "Thursday's " event, I can't keep from worrying some. My body has failed me and I'm more than a little upset with it.
Bright side is that Thursday will also be "Grandkids" day. I know it will be a very special one this time and I really look forward to it.
Jackie K in MO
http://www.myspace.com/myositisworld
Still no word on my brain MRI, nor my CK bloodwork. I try not to think of it, but with the diagnostic mamogram looming over me as "Thursday's " event, I can't keep from worrying some. My body has failed me and I'm more than a little upset with it.
Bright side is that Thursday will also be "Grandkids" day. I know it will be a very special one this time and I really look forward to it.
Jackie K in MO
http://www.myspace.com/myositisworld
Friday, June 15, 2007
Myositis Blaahs
I attended the Kansas City Mini Convention that Harley Russell, KIT leader for Nebraska, Kansas, and Western Missouri, worked so hard to put on for all of us. It truly was wonderful and I would hope that everyone try their best to attend any support group meeting that you can. You would not believe the feeling of true kinship that comes over you when you enter the room!
I think I used all my energy tokens up to attend the convention as I have not been feeling my best since my return. My daughter came in to spend a few days with me and with a lot of help from her, I have created a page on MySpace.com. The new page also has the Map Of Where We Are In This World, but also contains so much more information.
For my dear friend Fay, my daughter made a countdown calendar to Myositis Day. I have started my promised list of doctors that treat Myositis. And when I finish this Blog entry I hope to start on the Remembrance Page. Please, if anyone has a doctor or someone they want added to the Remembrance Page send me all the details so I can do this.
The URL for Myositis World on MySpace is: http://www.myspace.com/myositisworld I hope you will join myspace and leave me a comment. Make sure you're on the map!!
I had been asked to become the leader for The Myositis Association for Southern Illinois and the rest of Missouri. After attending Harley's meeting there was no way that I could not say yes. I hope to be able to plan a get together for our KIT group in the near future.
I think I used all my energy tokens up to attend the convention as I have not been feeling my best since my return. My daughter came in to spend a few days with me and with a lot of help from her, I have created a page on MySpace.com. The new page also has the Map Of Where We Are In This World, but also contains so much more information.
For my dear friend Fay, my daughter made a countdown calendar to Myositis Day. I have started my promised list of doctors that treat Myositis. And when I finish this Blog entry I hope to start on the Remembrance Page. Please, if anyone has a doctor or someone they want added to the Remembrance Page send me all the details so I can do this.
The URL for Myositis World on MySpace is: http://www.myspace.com/myositisworld I hope you will join myspace and leave me a comment. Make sure you're on the map!!
I had been asked to become the leader for The Myositis Association for Southern Illinois and the rest of Missouri. After attending Harley's meeting there was no way that I could not say yes. I hope to be able to plan a get together for our KIT group in the near future.
Tuesday, June 5, 2007
Map Pin Monster Amongst Us
There appears to be a Map Pin Monster living on Flapper that has acquired the taste of Myositis pins. If you can't find your pin you may have to register again. Sorry.
If for some reason your request to be put on the map has been rejected, please resubmit with more information. I at least need your name or nic; email address; city/state/prov/country where you live. It is also nice if you say which disease you have and use the colored squares.
The map is really coming along. I feel really lonesome in Missouri, but look way up there in Alaska at Robin. Then move all the way over to Hong Kong and you'll see poor Josette all alone. Explore.
If for some reason your request to be put on the map has been rejected, please resubmit with more information. I at least need your name or nic; email address; city/state/prov/country where you live. It is also nice if you say which disease you have and use the colored squares.
The map is really coming along. I feel really lonesome in Missouri, but look way up there in Alaska at Robin. Then move all the way over to Hong Kong and you'll see poor Josette all alone. Explore.
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