I can’t believe it is already December, almost reaching a new year. It kind of makes me sad thinking of the time of my diagnosis until this moment, knowing that it has been over two years that I feel like I am missing out on the world. 2015 will be the year. Optimism. It is going to happen. Screw this disease, I will find out what is holding me back, conquer it, and keep getting better and better. Walk the beach, go dancing, do normal things that so many take for granted. Be a part of the world again. 2015. It will happen.
This week has had its ups and downs. If you read my last post (you totally should be following my story because I am awesome), I was nothing less than a crazy lunatic. The first day of treatment usually kicks my butt, and this time was no different.
I have been a grump to Dave this week, even though I vowed to myself I wasn’t going to be, but the word vomit just seems to come out. He knows I don’t feel good however, so he doesn’t take it too personally.
My throat has been having a lot of issues this week, I think part of it is an overload of toxins. I feel like I ate a bunch of sugar, which I have not done. I am still having breathing difficulties, having to sit upright, and I feel like I got hit by a bus. Achy all over, my back of the head-heaches, Bartonella feet. My tachycardia symptoms have come back.
In the morning as soon as I stand, even though I lay in bed to “prepare myself” for a few minutes, I can feel my heart absolutely pounding, and I start to feel really dizzy. I have to sit on the floor to try to pick out my clothes from my laundry basket full of clean unfolded clothes.
Yesterday was my gynecologist appointment with my 4th gynecologist in the past year. Yup. 4th, as well as my two Lyme literate doctors advice. I am feeling like a medical mystery at this point. I only wish for a definitive answer, and I am yet to have that fulfilled.
I liked this doctor. She really took the time to talk to me, and I did not feel rushed. I told her basically my life story from the time I started having my period when I was in elementary school until present day. I came with blood work in hand. I wasn’t messing around. Like I said, I want answers.
I asked her about laparoscopic surgery, and she then told me that is not how she does things and wants to go step by step, especially with my past surgery resulting in an infection because I heal terribly.
Based off of my blood work, she is starting me with a testosterone cream that I am waiting for from a compounding pharmacy, and I have a follow up in two months. She believes that the testosterone might help even with some of the pain as it kind of lifts everything back up down there, and very low testosterone can cause a lot of symptoms on its own.
The next step is the possibility of starting an injection called Lupron, which basically puts you in a menopause-like state to see if that helps since it suppresses your hormones and can help with the pain. I think in the meantime I am going to do some research about this particular drug, as I have heard there are some adverse side effects, and I also feel like this might be a “band-aid” cure, not actually fixing the problem.
She believes I have endometriosis. That is why she wants to do the Lupron injections, and also told me to definitely not step the Depo shots, as she thinks it is keeping me from getting even worse. I am assuming that I will have to stop the Depo before starting the Lupron, I really don’t know a lot about this stuff yet, like I said, I am in the research phase of this all.
The one negative thing about my appointment is I don’t think she really understood the gravity of my sexual pain. Like one of my other gynecologists, she said I could be having an “adverse mental state” about sex, since it has been so painful in the past and it might be psychological. Nope. It still hurts like a bitch. I firmly believe this is my second misdiagnosis of “afraid of the penis” syndrome. LOL
Talking to my good friend about my appointment, she gave me some great advice. She always gives great advice. My next appointment simply say, “This is severely affecting my quality of life.” She told me that usually puts a fire under the doctor’s ass to do more.
Last night was a long one. I was in a lot of pain, sweating like crazy, and not only was I nauseas, I felt like someone was punching me in the stomach. I am still also dealing with menstrual cramps, as I have the period that never ends (It has been about 2 1/2 weeks now). I took a long nap on the couch, and when it was time to go to bed, I spent most of my time tossing and turning, trying to find a position to make my stomach a little more comfortable.
Today is bomb day, you know, the day I get blasted with a bazillion antibiotics to kill these suckers. I feel pretty yucky. It was a morning that I didn’t even make a small attempt to put on makeup, forgot my deodorant (not so good with hot flashes), and had a bit of a Mepron lipstick thing going on, as some stuck to my lips. Those of you who are not familiar with Mepron, it is a yellow kind of chalky liquid that helps fight Babesia. Many cannot tolerate the taste but I seem to be okay with it, I just don’t want to wear it as a lipstick shade. Note to self: do a quick check the mirror before leaving the house. Always.
I also had an appointment with Dr S. It is always nice to pick his brain a bit on everything, and get his opinion on it all as I weigh his very heavily. By the time I had to leave for my appointment I was pretty much toast. Ticking and a bit stuttery, I couldn’t feel my legs or feet, shaky, sweating like a pig and just plain in a daze.
I was happy that he didn’t completely disagree with my new gynecologist. He does believe that endometriosis is likely, or that I have an adhesion between my ovary and the back of my abdominal wall. He then went over my blood work with me. By giving him the date of my recent period beginning, he was able to track exactly where I was in my cycle. Unfortunately, it seems all my gynecologists have either not even questioned hormones, or only look for the “H”‘s and “L”‘s on paper. Dr S is very knowledgable about hormones, so he is a more helpful resource in this particular aspect.
The testosterone was obviously low, which is what the gynecologist saw. The verdict after having my appointment is that I am underproducing progesterone. My estradiol levels were low. He told me that I am not ovulating correctly and am not making eggs. He thinks maybe in the future treating with progesterone would be an option to try to balance the estrogen with progesterone.
We then went over the basics and my other questions that I have. I was very concerned about my glucose levels being all over the place and he then told me that my liver function is low. Hmm. I guess that would explain it. Yay for not being diabetes, nay for it being yet another issue with my liver. I am likely just really full of toxins, but something to keep an eye on. He told me in the meantime to avoid sugar, which I already do, and make sure I eat on a regular schedule, do not wait until I am hungry to eat.
I told him about my chest pains and he told me that it IS a medical emergency. Especially pain spreading with my arm. Darnit. I really just hate my local ER. I suppose every ER is probably the same though. He gave me the brand name of a good blood pressure monitor and do a pulse reading. I guess I will be ordering this weekend. Other than that, I think that is about everything I went over at my appointment, other than us joking about dealing with people over the phone, as I opened the conversation up telling him of my most recent Lyme rage on the clueless and lazy banker. After telling him about it, I feel a little more justified about my blowout on her.
I came home to Chinese food, and I got a lot in my stomach just in time, as the nausea was getting worse and worse. This will always be the highlight of my bomb day 🙂 I swear by it to whomever suffers from nausea. Eat greasy foods, stuff your face. 🙂 My dinner last night consisted of a burger, and french fries dipped in mayonnaise. I might shorten my life span a bit every poor meal I make, but it saves me so much, especially on heavy duty antibiotic days.
I am very full, and wiped out from a busy day. It might be time for a nap. Wishing you all a great weekend! 😀