Insomnia and Tears

Insomnia and tears seem to go hand in hand for me lately. I'm up to 1-1:30 am nearly every night. I have difficulty in falling asleep. I don't nap in the afternoons so I should be tired enough to sleep but I'm not. I went from not suffering from it to suffering from it.

I'm still crying at times (probably due to the lack of sleep so I'm up thinking about things). I never wanted to lose my organs...gone is my uterus, left ovary and cervix. Gone is more than half of my right ovary which tries to function but I still suffer from hot flashes every now and then. I realize that with the extent of disease that I had, there was little choice for pain relief and I needed pain relief. It's a painful reality that I live with. It's my Catch-22...rip out the organs that are so disease they aren't worth saving or keep them and pray that I wouldn't have the daily pain that I was in before my surgery. We (Jeff, Dr. Albee and myself) chose for the best possible pain relief and that meant ripping out the organs.

When I found out that I definitely had this disease in January 2000, never did I figure that it would be this bad. Never did I figure that it would be bad enough for me to rip out the very organs that I longed to keep. Never would I imagine crying over their loss. My tears aren't constant but they are there late at night when the house is quiet and I can't sleep and upon waking in the morning when I long for more sleep but can't get any.

I keep meaning to call my friends up to vent about this disease seems so selfish at the moment to me. So I wait until I'm a little less needy.

My migraines have lessened but is that due to me taking butterbur twice a day? I have no clue.

It'll be 9 months this month since my surgery. Maybe that has alot to do with things.


just maybe..........

I Made it Through

I'm proud of myself. I've made it through Christmas Eve and Christmas Day. I am thankful for several of my friends who I talked to over the phone. I needed that small pick me up.

We went to Mass Christmas Eve and I broke down and cried during part of it. I almost walked out of Church until I could compose myself again and rejoin the mass. I don't even know what exactly set me off...was it something that was said? Was it something that I was thinking about at the time?? Only God knows.

After the kids went to bed Christmas Eve, I went through the motions of putting out the milk and cookies for Santa and the carrot for the reindeer, hanging Baby Jesus on the Christmas tree and putting him in the manger underneath it, putting the presents under the tree, and more. I pushed myself to get it done.

Then when I had nothing else to do, I couldn't fall asleep. 1 am and I couldn't fall asleep...

Christmas Day I had my family here after the kids opened up their Christmas presents from Santa and from Jeff and I. I wanted to crawl into my room and spend the day in there crying at times.

Somehow I made it through...

People told me to have a hyst. People told me that I would feel no different after having one (or feeling so much better) and those people told me a pack of lies.

I don't feel normal.

I don't feel sexy.

I don't feel like a woman.

I don't feel like sex is the same (except for the lack of pain) but I have no drive for it.

I don't feel like some people understand me.

I do feel like crying.

I do feel like screaming.

I do feel like wondering when in the world a cure for endometriosis and adenomyosis will happen (besides having a hyst, multiple surgeries, and various types of prescription drugs).

I do feel like some people don't understand what I'm going through. I do feel like those people may never understand.

But I'm proud of myself for surviving Christmas. Hopefully next year's Christmas will be better for me emotionally. I'm keeping my fingers crossed here and praying.

Christmas is Here...My Heart Isn't in It

I wish that I was better emotionally right now. Feelings of 2001 have been flooding back with intensity and I'm wishing that I could crawl into a hole until the holidays are done and over with. You see I was peak in my fertility level Christmas Eve and Christmas Day 2001 when we were trying to conceive. I hoped and prayed that I would become pregnant...I never did. I never did experience that positive pregnancy result or experienced a baby inside of me. I am grateful (searching for the right term to use here and feel like I am failing miserably) that I didn't experience a miscarriage or ectopic pregnancy or a stillborn. I had several friends that experienced the first two things and I cried after getting off the phone with them after listening to them cry and me trying to remain calm and supportive long distance.

I am eternally grateful for what I do have: my loving husband who has stuck by me and has put up with my emotional rollercoaster ride back when we were trying to conceive, losing my friends, and dealing with me emotionally since my surgery, my kids who are my joy and my light, my family who helped after my surgery and watching my kids while I'm off at my various doctor's appointments, and my friends who have called and sent me emails and cards checking up on me and have listened to me cry on the phone.

This year I didn't do Christmas cards (the first ever) but did do a newsletter and sent the Christmas photo with Santa for the adults...for the kids they got their Christmas cards. I think I've sent off about 170 cards this year.

While I'm grateful that I'm alive, since so many things could have gone wrong during the surgery, and that the surgery has lessened the pain, the hysterectomy has made me feel slightly less than a woman and less than sexy. I'm grateful to Dr. Albee and Dr. Yeung for removing all of the endo that they could from my body. I'm grateful that my research led me to have surgery with the doctors at the CEC.

I hope that emotionally I start feeling better soon...that I'm back to myself again. I have my good days and I have my emotional moments. For Christmas Eve and Christmas Day, I'm setting aside some me time to mourn. I need to.

For those of you reading this, please read and sign the petition to Stamp Out Endometriosis. It means the world to me right now.

Christmas is nearly here and I'm emotional again...

I'm trying to work on Christmas cards here...this year is just a letter with picture of the family with Santa (our annual thing to do since 2005). Christmas music is on but I'm finding things hard given the loss that I've had this year. Back in 2001 on Christmas Eve and Day, I was peak in my fertility level. 7 years later to the Holiday season 2008, I've lost my uterus and I'm mourning its loss.

I'm eternally grateful for what I have playing around me (although tripping over toys isn't fun). I never expected to be traveling to a foreign country besides Canada and adopt 3 beautiful kids. But still the hurt is there. I want to cry and mourn the loss but that will have to wait until later after my kids are tucked into their snug little beds for the night.

I read from somebody else on a message board that if you are depressed before a hyst, you will be depressed afterwards. I never wanted to give up my uterus but I felt like there was little choice given the adenomyosis. I feel pretty defeated with this disease. I don't wish these diseases on anyone.

Please if you read this and haven't read and signed the petition to Stamp Out Endometriosis yet, please do so. You know that this woman has suffered from it.

Emotional Wall Coming Down

I brokedown earlier on the phone with a friend of mine and cried a bit to her. She doesn’t have endo but suffered from premature ovarian failure while she was trying to conceive. She understood the hurt that I’m experiencing to an extent.

I told her that I haven't read my operative report yet. It's 9 pages long. It isn't the length of it that is overwhelming to me. It's the content of it...this is what was done to ME.

At times I have felt that I needed to remain strong...that I can not break down. Most of this comes from the fact that I was just out of surgery with post surgical pains. Some of it stems from the almost denial that I'm having...that I really didn't have a hyst.

Now I'm starting to feel the raw emotions that I kept bottled up for so long. It's starting out like a slow leaky faucet that needs to be fixed. I'm not sure when the crying will stop or if it will stop right now.

The term for what I had done I had to look up today. I had a LAVH-LSO with partial vaginectomy with right ovarian cystectomy. I lost 50% of my right ovary because of the cyst that I had. LAVH is Laparoscopically Assisted Vaginal Hysterectomy with Left Salpingo Oopherectomy (left ovary and left fallopian tube removed).

I don't know when I'm posting next right now. For my family and friends, I'm sorry if I'm crying to you over the phone. I just hope that you understand what I'm going through and can be patient with me.

My Emotions

I have been asked how I'm doing emotionally. So here it goes...

I have to keep my emotions in major check. If I don't, I start crying, won't be able to stop, and it will hurt more. I know that once I start, I'll need lots of support and understanding and patience. I hope that you, my friends, my family, and my readers will understand.