Monday, July 2, 2012

Life is not fair to me!

Hello Everyone!

It's been another not so exciting couple of months. Since around the middle of February I've been having some unusual symptoms related to pregnancy. I had gained over 30 pounds in a matter of 6 weeks in which I haven't changed my diet, lifestyle etc. I was also experiencing galactorrhea which is the spontaneous flow of milk from my breasts. These symptoms are especially odd, because I've had a full hysterectomy so pregnancy is not possible.

I went to my gynecologist and he sent me for some blood tests. My prolactin level was above 200. A normal prolactin level is between 2-29ng/ml. Therefore mine was extremely high. I went to my regular doctor and he sent me for an MRI. The MRI showed that I have a micro prolactinoma which is a small tumor in my pituitary gland. I was then sent to an endocrinologist who put me on medication right away to shrink the tumor. I had also been on a nausea medication which is also used to help mother's whose milk has not come in. Bad news for me apparently. I stopped the nausea medication and my milk stopped and my prolactin level came down to within normal range so that was good news. The bad but good news is that I still have the tumor but it is small and it only needs to be watched at this point.

After getting over the fact that I have a small tumor in my brain I thought things would finally start to look up. On June 6 the day started out like any other day, we had some stores that we needed to go to, to pick some things up. We had stopped at home to grab some papers and I started to notice a small pain in my lower abdomen. I didn't think much of it so we continued on with our day. By the end of the day we ended up getting some groceries and by the time we left the store I could barely walk. The pain was getting much more intense. We quickly headed home so I could lay down. The pain was in my lower left abdomen and it was excruciating. The odd thing about where the pain was located was that it didn't make any sense. The ovary on my left side had been taken out about a year ago, I've had a hysterectomy so there isn't much there that could be causing the pain. I began to get so uncomfortable that Mom took the boys and myself up to the hospital. I had a CT Scan that showed I had a kidney stone that was in bottom of my ureter, and within a day or two it would pass into my bladder where the pain subsides. The bad news is that there is a second kidney stone still in my kidney which could stay there for days to years. The doctor had given me pain meds as well as Flomax which helps break up the kidney stone and pass it much quicker. It sure helped the first one come out but it also got the second one moving so I ended up in pain for about 1 week. I hope I never have to experience that kind of pain ever again.

Besides finding out that I have a small tumor and 2 kidney stones I am doing quite well. With being on my new medications I am starting to feel much more like myself. I can think much clearer, I have the energy to get up and get a drink if I need to and do the simplest daily routines that people take for granted every day such as having a shower, getting dressed and getting make-up and hair done. There are days when I can't work up the energy to have a shower without sleeping for the rest of the day because I'm too worn out. I am finally starting to be able to do all these things by myself. Most days I still need a nap in the afternoon or I won't make it until dinner time, but that is very minor compared to some of the things I need to do.

Keeping up the courage and positive thoughts are what helps get me through every day and knowing I have the support from my family and friends.

I have been put on a new IV medication called Invanz and stopping the IV Ceftriaxone. The Invanz costs $2200 every 30 days plus I have two other IV medications, antibiotics, herbal remedies, the cost of having to travel to see my Lyme Doctor in Redwood City, California and the cost of all my supplies has made it a real challenge to come up with the money to keep my treatment going. I am looking for any kind of donation to help me pay for my medications and supplies. My insurance has cut me off of all medications because I have Lyme Disease. They state that my medication regime is experimental and therefore they have denied my coverage. I also have a vegetation on one of my heart valves; the mitral valve. I am seeing a new Cardiologist in hopes that he will give me a diagnosis of "Bacterial Endocarditis", which is technically what I have growing on my valve. If he does, I'm really hoping that my insurance will cover my medications, but that is a big if! Many of the medications used to treat Lyme Disease are the same to treat Bacterial Endocarditis in that they are both bacterial infections that are extremely hard to get rid of. I have been cut off of insurance since October of 2011. I have a donate button on the top right side of my entry that is linked to my paypal account. If anyone is able to help out, it would be greatly appreciated.

Thank-you so much for everyone's positive thoughts and encouragement. It truly does help keep me focused on the better days that are ahead. Some days are really tough and you feel like giving up but knowing that I have lots of family and many friends standing beside me gives me much needed strength.