****WARNING****
This post will be considered TMI (Too Much Information) by some and will contain topics of menstrual bleeding. You have been warned so go back now if you don't want to hear it.
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To understand some of what I am gong through now I have to back to pre surgery. When I got the date for surgery I knew I would be on my period and the idea of dealing with both at the same time made me very uncomfortable. I spoke with the Dr.'s and they assured me it would be fine and I could handle it. They even went so far as to say I probably would skip my period just because of the stress of the upcoming surgery. So when I started my period on June 10th I was not surprised but not thrilled either. I managed it fine after surgery but it was one more thing to deal with. For most women a normal period cycle will last 5-7 days so when I reached the 10 day mark I called at talked to the doctor. I was told it shouldn't concern me too much that my body had been through a lot and it probably just needed more time to get back into a routine. I kept bleeding for a month before I finally got help! To make a long story short the Neurosurgeon said it couldn't possibly have been anything effected by the surgery and my primary Dr. seemed convinced that it had to be. My PCM (Primary Care Manager) started lab tests right away and put me on hormones to stop the bleeding in the meantime. I was suppose o take the hormones for 10 days straight and they were suppose to reset my menstrual cycle. They didn't.
I have since had more lab work done that always comes back normal. That would be something to be thankful for except that now we have nothing to help figure out why my body will not stop bleeding on it's own. I have also had ultrasounds done that come back inconclusive because the lining of my uterine wall is so thick they are not able to check for polyps or fibroids. I must say it's a horrible feeling to have your body not due the simple things it is designed to do naturally. After I stopped the hormones I started bleeding again and when I reached the 2 week mark that time I was sent straight to a OBGYN specialist. He was stumped! He did more lab work and again it came back normal. I am back on the hormone meds again because they are currently the only thing that will stop the bleeding. The plan going forward was to take them for two weeks at a time for two months. This will force my body to stop bleeding and then bleed only on the two week off period before I start them again. Our hope is that with a longer time period and the forced bleeding and stopping that my body will remember what it is suppose to do by itself. The hormone pills make my cranky and agitated but then stopping them is even worse. It's just a really horrible mess.
The bleeding aside I had some really not terrible weeks. Recently things have gotten tough. I have sharp pain at my incision site at times that forces me to stop what I'm doing. I get tired really easy and not my usual kind like I have hit a suddenly totally and completely exhausted wall. I can't explain it guys but something is just not right. (It is incredibly hard to admit that I'm not as strong as people think I am.) I had my follow up MRI last week and I have my follow up with Dr. Boggan (the Neurosurgeon) on Thursday August 28th and a follow up with the OBGYN specialist on September 30th.
I know it may seem weird to see me out and I look like all is well and then your read this...
I have such great support and amazing friends that when somebody does make a negative remark it takes me by surprise. I try really hard to still function like a "normal" mom, wife, friend, etc. and it really does take a lot of work. To the nay sayers I say if you could see the amount of effort or thought behind everything I do you would never feel the same. I would also invite you to read the Spoon Theory and hope that it will provide you with a more understanding outlook. It is an amazing story that helps answer the "But you don't look sick" comments and I think we could all learn something from it. It is hard to be sick but not look sick. I'm not saying it's easier to be sick if you actually looks sick but I do feel there is a difference in how some people treat you (good or bad) and what they expect of you.
I guess that's all for now and I will let ya'll know what I learn at my follow up on Thursday!
Maybe the people who say you don't look sick are really trying to say, " wow you look so amazing I would have never guessed you were going through so much." We can hope right!!
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