Thursday, September 27, 2007

Lupron day 13/14

Well finally af started, and I am glad. So far I am not in bed all day with pain. I do have pain but can live with it and do things I normally don't do when af is here. I'm still cold but I am the hot flashes are coming.

This evening was I watching some tv and had my first real hot flash. I was even almost crying watching the news. Talk about an emotional wreck.

Monday, September 24, 2007

Lupron day 11

I had the best weekend. Dh was out of town, which he so needed as he has been stressed. I was able to get things accomplished and enjoyed the alone. Once in a while is great. The weather could have not been more perfect. Its hard to believe it is fall already.

The lupron, so far is not bad. I am still having cold chills but still better than having hot flashes. Now I am just waiting for af to start. I know it is going to be different but not sure how bad pain wise it will be. But so far no spotting, no cramps, no overall pelvic pain, this is the best.

Thursday, September 20, 2007

lupron 6 into 7

12:30 and I am finally warm and I hope my temp holy cow, 99 what? I hope it stays like this so I can sleep tonight.

Wednesday, September 19, 2007

lupron day 6

I am still cold. If this is the s/e of lupron I guess that is better than hot flashes. Just feeling emotional not really mood swings per say.

Tuesday, September 18, 2007

Lupron day4-5

Still having cold chills. I slept better last night but again hot and cold. ok, feeling like I have bad pms last night. So far it is calm right now.

Sunday, September 16, 2007

lupron day 3

Today was better. I feel fine, no major issues, other than being hot and cold at night. I slept so much better last night. But tonight I am so cold, I am sure it is from the meds and the anemia is not helping either.

Saturday, September 15, 2007

lupron day 2

Last night I sleep ok. But I was hot and then cold the entire night. plus stomach messed up. I'm sure it is from all the meds I am on.

Friday, September 14, 2007

First Lupron Shot

I went for my first lupron shot today. I am hoping the s/e will not be to bad. So far so good. They also took one of stitches out. They were dissolving but just did not want to go away. These things only happen to me. They are leaving the one in my bellybutton and said it should go away over time.

I finally decided to take it as the endo was so bad. I figure that I have had endo maybe since high school but no one ever said endo to me. For my doctor to tell me that I was one of his top ten worst cases makes think. I want to have a family so badly but if my body has been out of whack for so long and now finally getting better. I need that time to heal and prepare it for a baby.

I know I have over thought and stressed out about it. The more I read online the more I was getting scared from the horror stories. But I want to give me every possible chance to get better and for me that is what I need to do.

Monday, September 10, 2007

what is happening to my cycles??

I thought I o'ed about 10 days ago and today I have all the signs of ovulation. Am I just dreaming this because I want it so bad or is this real? I hope and pray to god that it is real.

Thursday, September 6, 2007

Feeling better........?

I am feeling much better today. I think I must have had some bad pms when seeing my doctor. Its not normally like me to freak out like and over analyze things, ok well maybe over analyze yes but never freak out.

I finally went out of the house today to get my hair cut, there is nothing like a great haircut to make you feel so good about yourself. Now I think I will be able to make an informed decision about the lupron. I am not going to think about it at all this weekend. My cousin is getting married and it should be good time.

Tuesday, September 4, 2007

Post Op/Vent

I just got back from my post op appt. My surgery report was 3 pages long. My doctor told me I have the most severe endo he has ever seen. I am sure it was bad because I took estrogen for 4 months since I have high fsh. My previous doctor never thought I had endo even when I asked about me having endo.

I did not get all of the report as my re was stressing the lupron shot. I do have to see him again next week so I get more information about it. The back of my uterus was attached to my bowel and rectum. My left tube was removed because it was fused to my ovary with adhesion's. The tube looked like a squished up hot dog ( I know it sounds gross). I also had adhesion's behind my cervix. He said he removed a lot. He thinks I only have about 6 months before it will start to grow back.

So he wants me to go on lupron. I brought my shot with me. I told I was concerned about headaches and now I have to wait approval from my neuro if I can take it. But since I have not had my period he wants me to take provera to bring it on and then do the lupron.

My re's office kept questioning me on if I was pregnant, and I kept saying "no I wish I was" If I was I would not want the lupron. They even wanted me to get a beta because I'm on cycle day 38. I told them I have not had sex since the day before my surgery.

So my re would not even talk about me getting pregnant. He stressed and I mean really stressed about relieving my pain and calming down the endo. Then he was like we will talk later about other things.

I really don't want to take the shot since I want to get pregnant but I know it will help the endo calm down.

Saturday, September 1, 2007

The PTC (IH) Creed

The PTC (IH) Creed**

I promise to accept the fact that I have PTC, a neurological disorder which will limit my abilities in my every day life.

While I will always have PTC, some days will be good, and some days will be bad. I will be thankful for the good days and try to make the most of them. When I am having a bad day, I will try to remember that most likely it will not last.

When I am having a bad day, I will listen to my body, and get the rest that I need. I will let my family know that I am not feeling well, because they cannot read my mind.

I will not feel guilty about resting, because I will eventually begin to feel better, and in the long run, it will also benefit my family. They will not become malnourished if they eat peanut butter and jelly sandwiches for dinner.

I will not feel guilty or worry about the work that is not getting done while I am resting. The world will not fall apart without me, even though it looks like it already has.

I will not let anyone else make me feel guilty for taking time out for myself. They will never understand exactly what I am experiencing, the pain I feel, the exhaustion that I feel. They will never understand the fear that I feel when my symptoms creep up on me, and land me flat on my back.

I promise not to feel sorry for myself when I am feeling bad, because there are a lot of people out there who are in worse shape than I am. I will not be sorry for what I don't have, but be thankful for what I do have.

I promise to learn a lesson from my illness, which is not to take life for granted. I will try to enjoy every moment that was given to me, and be thankful for the times I can smile and laugh.

I will try to help others who also suffer from my condition. There are many confused and frightened people who need to hear comforting words from someone who has been there. There are many people who need me to take his or her hand, and be pointed in the right

Lastly, I will not ask "Why me?" While PTC has weakened my physical body, it has strengthened my heart, my soul, and my spirit.

-Sheila Reilly

**PTC means Pseudotumor Cerebri and is the former name for Intracranial Hypertension.