What is Fibrodysplasia-Ossificans-Progressiva
Fibrodysplasia ossificans progressiva (FOP), is a rare disease of the connective tissue. A mutation of the body's repair mechanism causes fibrous tissue (including muscle, tendon, ...
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By ricksdar
01/29/09 |
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By ASPIRE4GRACE
10/06/07 |
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There isn't a theme for Rage so that will have...
ricksdar Apr 24, 2009
Tired of being angry all the time
Friday, April 24, 2009 |
There isn't a theme for Rage so that will have to do. I am so tired of fighting this depression. This is the first time that I haven't been able to pull myself out of it. I know part of it is because of the shit Ranae is putting me through. I found out that she is telling her father that while he was out on his truck he didn't know what really went on here. Like she was abused o...
1 Recommendation
1 Comment -
Now we all know that I can't make a short jour...
ricksdar Apr 16, 2009
Thursday, April 16, 2009
Now we all know that I can't make a short journal entry!!!! I just have so much pinned up inside that it all comes pouring out. I did have Rick pick up a new journal for me to start writing in here at home but I think I have enough piled up in my head that I could write a book. In fact my counselor told me I should. Now that's sad!
Yesterday I turned 45. It was a good day. All of my kids c...1 Comment -
I just love Spring!!!!!!! I just found out that I ...
ricksdar Apr 04, 2009
Saturday, April 4, 2009 |
I just love Spring!!!!!!! I just found out that I get to go out on the road to Illinois with my hubby in the big truck!!!! It has been almost two years since I have taken a trip with him that was more than two days. We have needed this time together so bad lately. There is nothing like living in a truck to get to know someone! I once was out 18 days with him!!! I have been through so much this la...1 Recommendation1 Comment -
I feel just awful because I haven...
ricksdar Mar 28, 2009
Saturday, March 28, 2009 |
I feel just awful because I haven't been able to keep up with DS/Chronic Pain as of late. I had another flare-up,(for those who don't know it is a new bone growth) this one on my back left rib cage. It has locked me up further, but I still have usage. I can't raise my hand over chest level now. That really only bugs me when I'm fishing! Hubby will have to do just a li...1 Recommendation -
I found out that my daughter is working here in ou...
ricksdar Mar 14, 2009
Saturday, March 14, 2009 |
I found out that my daughter is working here in our little town of 1100. She still hasn't talked to me since the middle of Feb. and I still don't know why. We were so close during her years at home. I knew her going out on her own to college would be different, after all I have three more children. I just didn't know she would drop out without telling us, move in with her boss from Da...1 Recommendation2 Comments -
I feel like I'm running in circles trying to k...
ricksdar Mar 12, 2009
Thursday, March 12, 2009 |
I feel like I'm running in circles trying to keep ahead of something I can't even see. And I hate having to even move anymore. I use to love to be on the go, now I would rather just stay down. I know it's the depression and I need to pick myself up. Kinda like that new bra commercial, you have to hold them up, pick them up. If only I could feel that way again!!! Maybe I need a ne...1 Recommendation -
Well, it has been a while since I have been able o...
ricksdar Mar 08, 2009
Sunday, March 8, 2009 |
Well, it has been a while since I have been able or made the time to journal. I am once again trying to get myself on a routine. I seem to go through this constantly and it drives me crazy. The side effects of the medication leave me with no drive or ambition. On top of that once I get out of commission for a while it is hard to come back. I need routine of some sort in my life. I mean befo...1 Recommendation1 Comment -
I have been avoiding this all day. I think it is b...
ricksdar Mar 01, 2009
Sunday, March 1, 2009 |
I have been avoiding this all day. I think it is because when it is written right in front of you it is more real. I'd rather stick my head in the sand and hide from everything. Go into my bedroom, closing the door, and sleep. I hate stress, especially when I have caused it, knowing one day it would catch up to me. I received a portion of my ex husband retirement, only $355, but money is mone...1 Recommendation2 Comments -
I found a little message reminding me that it was ...
ricksdar Feb 18, 2009
Journal Entry for February 18, 2009
Wednesday, February 18, 2009
I found a little message reminding me that it was time to update my goal. I believe that I have been doing better in living life again. I have friends now that I try to keep in contact with daily or every other day. It's like having a social life again! That is a biggy for me, it had gotten to the point that I really didn't want to be around anyone. That included messages, IM or phone cal... -
Today my pain is up. I think I did to much yesterd...
ricksdar Feb 16, 2009
Monday, February 16, 2009 |
Today my pain is up. I think I did to much yesterday on the computer. It really hurts just to type, moving my fingers on my left hand is painful to my back. I hate it when everything tightens up. Rick is home sick with the flu. I feel really bad for him. I wish I could do more than make sure he has something to drink and meds. I wish I could still make homemade soup. Sometimes I feel like I'm...1 Recommendation1 Comment -
I woke up early this morning with my oldest daught...
ricksdar Feb 14, 2009
Saturday, February 14, 2009 |
I woke up early this morning with my oldest daughter texting me to find out if I was awake. I ignored her. I wasn't ready to deal yet! Love her dearly, but she is as hyper as I use to be! Anyway, my hubby changed to channel to news only to find out it was Valentines Day. I had completely forgot, I felt terrible. I told him that I hadn't been able to get him anything because I had forgotte...1 Recommendation1 Comment -
I had to make yet another call to my doctors offic...
ricksdar Feb 12, 2009
still fighting for effexor and the blahs!!!!
Thursday, February 12, 2009 |
I had to make yet another call to my doctors office, bothering poor Lonnie to see if there was any news yet on my effexor appeal. I wish that I could just buy it. It would be nice to be able to afford the medication that I needed when I needed it. I hate having to ask if I can have a medication that is needed. I realize that it is expensive, and the government is trying to cut back money by takin...1 Recommendation
Tired of being angry all the time
Friday, April 24, 2009 |
There isn't a theme for Rage so that will have to do. I am so tired of fighting this depression. This is the first time that I haven't ...
1 Recommendation
1 Comment
Fibrodysplasia Ossificans Progressiva Information
Fibrodysplasia ossificans progressiva (FOP), is a rare disease of the connective tissue. A mutation of the body's repair mechanism causes fibrous tissue (including muscle, tendon, and ligament) to be ossified (turned to bone) when damaged. In many cases they can cause joints to become permanently frozen in place. The growths cannot be removed with surgery because such removal causes the body to "repair" the area of surgery with more bone.
Over time, as more bone grows and the patient loses mobility in more and more joints, it may become impossible for the patient to reach, walk, eat, or even breathe. The disease is usually fatal as bone crushes the internal organs. People with FOP usually lose all mobility by the age of 30 and die by the age of 40. There is no known cure.
Children born with FOP characteristically have short big toes. The first "flare-up" that leads to the formation of FOP bones is usually before the age of 10. Often, the tumor-like lumps that characterize the disease appear suddenly overnight. Because the disease is so rare, the symptoms are often misdiagnosed as cancer. This leads doctors to order biopsies, which can actually exacerbate the growth of these lumps.
