Glad to hear things are going well with your niece and sorry to hear that things are still hurting so much. My daughter struggled for years in school and I
never knew what was going on as they never tested her for anything. Turns out she had severe ADHD and continued to have it as an adult. She was recently
diagnosed and is now on meds and things have changed so much for her. She is so much more focused and is even learning how to drive!!! something very much
needed as she has 4 kids,2 of those special needs.
This last week has been pretty much unbareble for me. I have been no lower then a 7 on the scale each day and by afternoon that jumps and by the time I hit the bed I am surely at a 10. I was so exhausted by all of this the other day that all I could do was stand by the front door with my head resting on a wall and crying. It hurt so much to move and even breath. Everything hurt from my neck down with the biggest pain being in my low back and legs and feet. When I stopped to really think about the pain and how familiar some it was it finally struck me that the endometriosis must be back with a vengence. Endo,for those that dont know,is when you have a period the blood backs up into the fallopian tubes and then spills out into the pelvic cavity. It then adheres all over to your organs and pelvic walls and imbeds itself into deep adhesions. These "spots" fill with blood each month and burst and spread to more areas and cause tons of damage. Your belly basicaly looks like a spiders web with scar tissue.
I was told years ago that if I got rid of the source of the bleeding,hence forth a hysterectomy,that I would be cured. Not so. If even the tiniest piece of this tissue remains it spreads again. They thought that if they witheld all female hormones that would take care of the problem until they discovered that this disease makes its own estrogen!!! So after having all my hormones stripped and thinking and feeling like I was losing my mind it all came back again. I have had over 25 surgeries to remove the scar tissue and adhesions over the years. The last time was about 4 years ago and I went in for day surgery and woke up in the ICU on life support. The surgery turned out alot more lengthy and complicaited and took so long that from having my body on a tilt table for so long when they went to remove my breathing tube my airway collapsed. I dont remember what happened while all this was going on and from what I heard its a good thing as I guess I was thrashing all around suffacaiting and freaking out before they could sedate me enough to barely get a vent tube back in me and spent the next 5 days terrified.
I saw a doc again a few years later the University of Washington in Seattle to see about having more extensive surgery to remove adhesions. Instead of mostly using a laser to burn things off I needed then to actually cut out the cores of these spots to give me more time inbetween surgeries. The problem was that I met up with the head of gynocology out there and he refused to operate on me!!! He said that he would not chance having me on his table because of the risk of either preforating my bowel ( the scar tissue pulls all your organs out of place and the last surgery my bowel was glued to my spine and my overies were glued to each side of me) or having me code on his table. I said helloooooooooo? wouldnt my best chance be to have a top specialist in the field operate on me? His answer was wellllllllll I have no doubt that you can find someone to do the surgery but it wont be me. So I kinda put it all on the back burner so to speak. But there is no denying this horrible back pain and leg pain as being sure signs that the endo is indeed back with a vengence so now its time to find another surgeon and pray for the best.
I went in for the head scan and I did have a second stroke,although not as bad as the first. They also did an EEG to check for any seizure issues and as I told them I didnt have that but omg the strobe lights they use during that testing gave me the worst migraine!!!! I see my primary next week and will set up having my hip scanned since now I am limping from the time I get up till by bedtime I can barely drag my leg after taking that fall off the curb in the snow. Should be interesting for any needed surgeries since I live in a townhouse and would be stuck upstairs ughhhhhhhhh.
On a good note I did replace my horribly uncomfortable furniture with a good gently used set. Think traditional Ethan Allen style,only a year old and in perfect condition for only 275.00!!!! This has helped so much when sitting with the back pain!!! and is beautiful to boot. Jay bitched some about getting it but I told him hell no!!! there is no way that you get to buy a friggen new XBOX for gaming and I have to suffer on furniture that kills my back. It felt good to stand up for myself and get some results and next week I am buying new rugs to match the furniture so there neener neener lol Wow it just felt good to laugh.............Well, keep up the great work on your teaching John. I am so proud of you for taking this on with all the other things you have going in your life. You are truly changing this girls life for the better.
Hug's,
Karen
This last week has been pretty much unbareble for me. I have been no lower then a 7 on the scale each day and by afternoon that jumps and by the time I hit the bed I am surely at a 10. I was so exhausted by all of this the other day that all I could do was stand by the front door with my head resting on a wall and crying. It hurt so much to move and even breath. Everything hurt from my neck down with the biggest pain being in my low back and legs and feet. When I stopped to really think about the pain and how familiar some it was it finally struck me that the endometriosis must be back with a vengence. Endo,for those that dont know,is when you have a period the blood backs up into the fallopian tubes and then spills out into the pelvic cavity. It then adheres all over to your organs and pelvic walls and imbeds itself into deep adhesions. These "spots" fill with blood each month and burst and spread to more areas and cause tons of damage. Your belly basicaly looks like a spiders web with scar tissue.
I was told years ago that if I got rid of the source of the bleeding,hence forth a hysterectomy,that I would be cured. Not so. If even the tiniest piece of this tissue remains it spreads again. They thought that if they witheld all female hormones that would take care of the problem until they discovered that this disease makes its own estrogen!!! So after having all my hormones stripped and thinking and feeling like I was losing my mind it all came back again. I have had over 25 surgeries to remove the scar tissue and adhesions over the years. The last time was about 4 years ago and I went in for day surgery and woke up in the ICU on life support. The surgery turned out alot more lengthy and complicaited and took so long that from having my body on a tilt table for so long when they went to remove my breathing tube my airway collapsed. I dont remember what happened while all this was going on and from what I heard its a good thing as I guess I was thrashing all around suffacaiting and freaking out before they could sedate me enough to barely get a vent tube back in me and spent the next 5 days terrified.
I saw a doc again a few years later the University of Washington in Seattle to see about having more extensive surgery to remove adhesions. Instead of mostly using a laser to burn things off I needed then to actually cut out the cores of these spots to give me more time inbetween surgeries. The problem was that I met up with the head of gynocology out there and he refused to operate on me!!! He said that he would not chance having me on his table because of the risk of either preforating my bowel ( the scar tissue pulls all your organs out of place and the last surgery my bowel was glued to my spine and my overies were glued to each side of me) or having me code on his table. I said helloooooooooo? wouldnt my best chance be to have a top specialist in the field operate on me? His answer was wellllllllll I have no doubt that you can find someone to do the surgery but it wont be me. So I kinda put it all on the back burner so to speak. But there is no denying this horrible back pain and leg pain as being sure signs that the endo is indeed back with a vengence so now its time to find another surgeon and pray for the best.
I went in for the head scan and I did have a second stroke,although not as bad as the first. They also did an EEG to check for any seizure issues and as I told them I didnt have that but omg the strobe lights they use during that testing gave me the worst migraine!!!! I see my primary next week and will set up having my hip scanned since now I am limping from the time I get up till by bedtime I can barely drag my leg after taking that fall off the curb in the snow. Should be interesting for any needed surgeries since I live in a townhouse and would be stuck upstairs ughhhhhhhhh.
On a good note I did replace my horribly uncomfortable furniture with a good gently used set. Think traditional Ethan Allen style,only a year old and in perfect condition for only 275.00!!!! This has helped so much when sitting with the back pain!!! and is beautiful to boot. Jay bitched some about getting it but I told him hell no!!! there is no way that you get to buy a friggen new XBOX for gaming and I have to suffer on furniture that kills my back. It felt good to stand up for myself and get some results and next week I am buying new rugs to match the furniture so there neener neener lol Wow it just felt good to laugh.............Well, keep up the great work on your teaching John. I am so proud of you for taking this on with all the other things you have going in your life. You are truly changing this girls life for the better.
Hug's,
Karen
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