 |
 |
 |
|
|
|||
|
|
||||
|
||||
|
|
Re: {{{{ angie }}}} and to everyone else....From: nsmitch (anonymous@obgyn.net)Tue Oct 31 18:22:16 2000
Thanks Belle for the Mendo site....Just read it and cried, cried a lot. I have done this for 22 + years ALL ALONE and have never had anyone who really understood. All doc appts. etc. have been alone. (As you know I am "permanently disabled" and have had to face some pretty serious talks regarding possible diseases and my own mortality) I get a ride to surgeries but that's it. I have always been the caretaker and of course my old position as counselor helped foster the belief that I could handle anything. I am beyond tired of hearing how strong I am!! For Angie and others, I apologize that yesterday's letter was not as supportive as some of the rest of yours. I had to step back and really see what's going on with me. Angie, you hit a nerve (as did all of the other mail). I think I came back here too early and maybe should have waited until after Friday's surgery. I can tell you all now that I am worried. The pain, etc. now is like that I had many years ago. I have always had severe pain and have learned to live with it but this is beyond what I have gotten used to. I cannot tolerate most pain meds so Advil is mostly all I have. Anyway, this Friday will have some repercussions that I am not quite ready for and what's worse is that I have to tell my guy over the phone and will not be able to truly gage his reaction. He is new to this disease and I have tried to warn him off from talking to people who "know" because most often those "in the know" are still living in the dark ages with this disease. As I understand it, I am a rarity as I have had this for so long and have been able to avoid a hysterectomy and I still "may" be able to have children (none so far, but we'd like to try...if it is in the cards. Been preparing for the bad news since I was 17 though). Note of thanks to the docs who've kept me patched together, cried with me, held me, and made informative decisions WITH me regarding this disease. I appreciate the web site Belle and will pass it on to him. I grieve for those of you who have opted out of intimacy. It is very important in relationships. I still engage in sex although I am in pain more often than not. I still grieve that I have difficulty being "on top" like most women supposedly enjoy (too painful and my breathing probs don't help the situation) but I have been able to improvise and find other ways/positions of being on top, etc. Sometimes it is too painful to be touched at all and my guy is learning that gentle caressing and kissing all over and especially where I hurt helps me redirect my focus and I can relax and enjoy our time together. I also have a rule: "I decide when it is TOO MUCH pain NOT YOU!!" I know that seems unfair to him, but because my only other choice is no intercourse I will always choose some pain over nothing. As some of you know, I am also losing sensation all through my body and also have additional nerve activity/pain. I have come to the conclusion that to feel pain is better than to feel nothing....Mon Dieu how it killed me the first time he held me and I thought he'd moved his hand off my thigh but it was still there :'-( We cried together; I cry now because the loss is progressively increasing....as is the pain. How do you make anyone understand what this disease, or any disease/disability feels like? You can't fully, but you can hope for compassion and you can be compassionate yourself. I find myself short-fused and scared and I have to retrace my steps and explain where everything is coming from. I owe him and myself that much. (Belle I will pass this site on to him to read, thank you.) As for my family members, etc. I have learned that they will NEVER get it and I have stopped fighting that. The doc talks only to me post-op because my ride always gets the info. wrong. You see, people who care for us also NEED us to be okay especially when they feel helpless to "fix" the problem. Again to Angie, I apologize for being too wrapped up yesterday to see what you really needed and I thank those of you who were able to give her the compassion and words necessary. Namaste to all, Sally If words could say all that we feel, there would be no need for an embrace. But language has its limitations, and the heart has none. It expresses itself spontaneously in even the smallest things we do. -Robert Sexton
> ----- Original Message ----- {{{{{{{ Angie}}}}}}} Vent honey it helps sooo much and alot of us understand exactly what you are saying. I know what its like to have an uncaring partner.After having my first lap..I had my bowel knicked causing me to have PID and I was rushed back into hospital 80 pounds and dying..my then fiance was out drinking with the" Boys" while the doctors where deciding whether they should rush me back in for an emergency laparotomy.. I understand how you are feeling and it hurts so much when you can not make them understand the extent of our pain & suffering. If you ever need a shoulder or an ear I am always here. Best Wishes and a Warm Welcome, Belle. P.S The site Mendo's is a Site for The Partners of Endo Sufferers.. Check it out..... both their sites are Brilliant.. John's page: MENDO - Men and Endometriosis: http://www.geocities.com/HotSprings/Spa/8449/ Carey's Endo Window with Endo Sister's Survival Kit: http://www.geocities.com/HotSprings/Spa/8509/
>----- Original Message -----
http://www.hotmail.com.
> >
|
|
Return to ![[ endo@obgyn.net ]](../../images/endo_at_obgyn.gif)
Technical Problems: webmaster@obgyn.net
Last Updated: Mon Nov 2 03:33:43 2009
Women's Insurance Checklist from Auto Insurance Quote
home | medical professionals | women | industry | forums | international