March Part 3 – Searching for Answers


Sorry, once again I have been really slacking on my blog. I have been sleeping constantly, and when I am not sleeping I am at work or having doctor appointments, running basic errands, and going to the pharmacy for my refills.

Needless to say, my biggest issue the past week has been exhaustion. Unless you have a chronic illness or disease, this type of exhaustion is hard to describe. It is one of my biggest pet peeves, when a perfectly healthy person tries to relate, describing their exhaustion from having a single restless night, or blaming it on the weather. No. You don’t get it. At all. Dr. J has described my exhaustion as almost a narcoleptic state, as often I can be mid conversation and fall asleep.

My legs and feet have been still causing issues with circulation and pain, so I have been keeping them elevated, and my microwavable booties have been my friend. I woke up one morning and have developed a huge cyst, or possibly gout on my left toe. There was nothing wrong with my foot the day before, and I just woke up with it so it is kind of odd. Another medical mystery. It has been incredibly painful, and I have been babying it with epsom soaks, and wearing Uggs to try to give it some relief. I have yet another Dr appointment with my GP next week, so if there is no improvement, I will see if they have any insight to it. Do any of you readers have any thoughts about this issue? Has anyone had something similar?

I saw one of my gynecologists the other day for my Depo shot, and I told her all of my issues since my Lupron shot, from the peeing blood clots, to having a full period, to the edema. She at least had one thought, and had me take a urine test, to see if there was any proteins or blood in my urine, to see if I possibly had a UTI or kidney issues. Everything came back normal. She basically told me she didn’t have a clue, and that Dr S would probably have better answers for me.

I find it really odd that gynecologists really have no idea about hormones, when hormones play such a huge roll in gynecological issues. I also find it odd that one would prescribe such as what I was told a “big gun” treatment, that being the Lupron, would not have any answers about side effects. Maybe it is just my luck. Fortunately, Dr S is very knowledgable about hormones, and I suppose it takes an army sometimes to get answers.

Dr S had some ideas, but was honest and said it possibly was too early to tell. He told me that this month would be the month that I will finally have answers, so although it is a waiting game, I will know. He believes that if this treatment works, I should really consider a hysterectomy, or at least removing an ovary. A big step, so I will see how it goes. I really pray that this is my answer to all of my issues.

His thought about having my period on Lupron is that it is early on with the shot, and my uterus was primed for having my period, so it just happened. He said my hormones are likely adjusting and coming off line, such as an increase of estrogen at the moment, and a decrease of progesterone. I could be mistaken on that as it might be reversed, but I am pretty sure that is what he said. Thank goodness he gives me basic notes about the appointments! Lyme brain seems to happen a lot as soon as I sit in the chair for all of my appointments.  He said if my period happens again with the course of my treatment, it is definitely an issue and I will have to get a hold of him, and my gynecologists.

The blood clotting is something that he considered a bigger concern. He feels that at the moment, I may be getting rid of endometriosis in my bladder, as I could have a lot of adhesions, and it is all coming out. He told me that I really need to say something right then and there (I am always terrible at this as I hate saying anything) if it happens again, take a sample, and contact one of the doctors. He told me to make sure I stay on Nattokinase and my baby aspirin routine to prevent clotting, since I have Factor V Leiden.

He told me that this upcoming month I may face issues such as hot flashes (this is nothing new, thanks to Babesia), dryness, insomnia, hair loss, and skin changes. He is curious as to when my hormones are out of the equation, if my Lyme treatment will go better. Maybe this is the real answer to my problems. Maybe I will feel a hell of a lot better, and my fingers are crossed. My fingers are also crossed that I will be able to have some sort of intimate relationship again, as Dave has been more than patient and understanding, but I am sure he is going out of his mind.

Now the poo talk… you can skip this paragraph if you would like, but as I promised with all my writing, I am real with all of my issues, the good, the bad, and the gross.

My last issue that I discussed with him is that once again I am having blood in my number two. Never on my toilet paper or red in the toilet, always a dark burgundy, sometimes with a little red in my “specimen”. I know this isn’t related to the Lupron, as it has happened before the shot. He told me that it may possibly be a divirticular issue, which can cause inflammation or infection of the bowels. I will have to do more research on this, but I believe that a diet change can help. A new project for me! 🙂 Once again, he told me I need to speak up if it is a continued problem.

Although I could not get exact answers but high probabilities, I felt so much better walking out of his office. I have some sort of direction, and seeing how things go this next month will really solidify what is truly going on.

As for my Lyme issues, I have really more or less been wiped out. I have been getting the Bartonella feet and I had another collapse and pass out issue after taking a shower. Other than that, I really have been toughing it out with my brain fog, and everything else that has come my way. Treatment starts again on Monday, and I am really interested in how it will go now having my injection, and I am actually pretty optimistic about it. This will be my last protocol before I go back to DC, and I have high hopes to be able to give them good news.

If I don’t write soon, have a good St. Patty’s day, and of course enjoy the rest of your weekend!

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