Wednesday, January 28, 2009

It WAS a good day!

I got the call from the Mayo Clinic yesterday to set up an appointment with the neurosurgeon. They have my MRI report and apparently think I should be operated on, but they don't have any of my test results or the MRI film...so I'm not buying it just yet. The hospital called back today to set up a vision field test for the day before my appointment so the neurosurgeon can have those results by my visit. And then they set up an appointment for me to see an endocrinologist at Mayo the day after my neurosurgeon visit. I also set up an appt. with a GYN at Mayo so I can have a whole team of docs there looking at the big picture. This is all going down next week, so it'll be a big week for sure. My vision field test is on Tuesday, then neurosurgeon Dr.P on Wednesday, then endo on Thursday. My GYN visit is the following Tuesday with Dr. K.

Today I went to my current GYN to talk about the Lupron and my little morning problem. She's concerned about the pain in the morning and did a urine culture that we'll find out about in a week or so. She's wondering if it's a recurrence of my kidney infection from 5 months ago, but doesn't a recurrence involve some sort of ceasing and then return of the pain? This never went away... She also thinks I should stop the Lupron because "I've got too much going on". Apparently the Lupron wouldn't have any affect on the test results, but birth control would. So she's saying that I need to stop the Lupron AND not go back on birth control...that is absolutely terrifying. The last time I went off birth control for only three months (and mind you, it was right after a laparoscopy to remove the endometriosis) I ended up on a medical leave because the pain was so bad and I had such a huge cyst on my right ovary that ruptured and wreaked havoc on my pelvic area. That was the reason we started the Lupron in the first place. I've just started feeling like the endo isn't so horrible, and now I'm going to stop all at once? Can't be good. We'll see what happens after she calls my endocrinologist to discuss everything that's going on. I'm glad that she said she'd call him, I like the idea of my doctors working together. I have trouble believing all of this is totally unrelated!

One thing that the GYN said today that sort of threw me off was regarding my reproductive health. Since I was 19 years old and found out I had endometriosis, and then stage 4 endometriosis, I've had doctors telling me that I shouldn't wait too long to try to get pregnant. Can you imagine hearing that at 19? Not healthy! I've been concerned about it ever since. I don't know why I have to be one of those women who really really wants to be a mother, and know what it feels like to be pregnant. Why couldn't I just be a woman who is ok with the idea of not having children. But no, I really want to be pregnant one day. But the odds aren't looking so good. Today I told the doctor that I still really want to try, and I don't want to wait years to do it. She told me that that just isn't an option. She said that I'm young, I have plenty of years. I need to focus on my own health and making sure I'm ok and don't lose years off of my life before anything else. I agree that I need to make sure I'm healthy, but which is it? Do I really have plenty of years? I have endometriosis, Hashimoto's disease, and apparently Cushing's disease...all of which are leading causes of infertility. I know miracles can happen...but if it's already difficult after 30, shouldn't I be thinking the earlier the better? Oh I don't know...

I'm feeling overwhelmed again today. Probably just because I'm setting up more appointments that are pulling me away from work right at a very crucial time in my project. I begin observation next week, and if I'm not there to answer questions and make sure everything is on track, I'm a little terrified of what could happen. Plus I still don't feel like I'm super prepared for the observation to begin. I have a lot of data that I need to analyze and still even pull. It's just a lot on my plate right now, and I'm having trouble not throwing my hands up in the air. ESPECIALLY when I can't sleep at night and feel totally exhausted all day long. I just want to sleep, getting out of bed shouldn't be this difficult. :( At least I have some forward progress with the Mayo Clinic...

5 comments:

Amanda and Tim said...

I'm glad to hear you felt it was a good day and that it went well at the clinic. I agree with you when you say you have a hard time believing all of this isn't connected - it's just sometimes we (even doctors) don't make the connection straight away! Keep perservering until you are happy that they have looked into absolutely everything.

Sorry to hear the doctor thinks you should come off the Lurpon and birth control when you got so ill last time! Your fear of what will happen is completely understandable.

As for possible infertility and wanting children - I hear you! I always, always wanted children and half of it is seeing the process right through from conception and birth to the rest of their life. I panic T sometimes by saying I don't want to leave it too late to start trying but more and more I am wondering if my body would even cope with it if we did fall pregnant because I seem to react so badly to shifts in hormones... it's so much more complex than when you think about having children before realising you have something like endo, let alone the extra health issues you are having to deal with! I do so hope you manage to live your dream in the future, I really do!

Take care of yourself and keep us all updated!
Amanda x

My Endo Journey said...

I agree with your GYN. You really need to be focusing on you right now...not what could or could not be in the future! Plenty of people have children when they are told they can't. There is so much that can be done these days! I have hope in other success stories and knowing that sometimes, to our advantage, Dr.'s don't know everything :)

I'm sure you ARE overwhelmed. Being in charge of our health care is exhausting! You made a lot of appointments today. But, it looks like a great plan! it'll be nice to know that you'll be speaking with all these professionals soon and that some of them will be talking to each other. I love when they can communicate like that!

Thinking of you. You should do something special for yourself this weekend! Me? I'm going to get a pedi and a mani! ;)

My Endo Journey said...

Sorry, I didn't mean to downplay your concern about children. I know the worry and bother over the matter. I just meant, try not to worry yourself with that right now-you've got a really full plate :)

Amanda and Tim said...

Hi Amy, hope you're having a "good" day today. Just letting you know I have left you an award on my blog :o) if you want it?!

CT said...

Just wanted to share that I have felt overwhelmed by the whole kids things myself before. You just have to do what's right for you, and not let a doctor push you into your decision! Good luck with everything!