The Brain Game III

Welcome to our 6th season of the Brain Game! I’m your host, Brain Game veteran, Katt G! Let’s take the time to review the rules…

In all seriousness, I like to pretend it’s a game, when it comes to my pituitary adenoma simply because it’s such a huge health problem, for myself. I am an obese woman who walks 3 to 6 miles a day. While genetics plays a role in my weight, my pituitary tumor is the real force behind how much weight I retain. My body is flooded with too much… well almost everything. Let’s just say, think of all the hormones your pituitary gland is supposed to regulate. Then think about those hormones being controlled by a two year old and that sums up my life! It causes me to have infertility issues, pain, headaches (some monstrous), and weight gain.

I’m a big old, almost 6 foot tall woman; I really didn’t need any help in the being large and in charge department. Ah well, such is life.

Since my son was miraculously conceived, then born without a complication, and I was able against all odds to breastfeed him, I have been having very superficial visits with the endocrinologist. Lots of blood was drawn and instructions given on “what to watch out for.” Then, my son self weaned around 2 years and I thought it was time to go back and be looked by my endocrinologist.

So I was, and I was asked to take a test at home. I will spare you the details. I was to turn in that test to my local hospital. Completing the test to the best of my abilities, I turned it into my local hospital to only have the test thrown out. Now, they say it was my fault. So when I returned to my yearly exam, I was informed my test results never came.

So I took another. Once again, this past November, after triple checking with the lab techs, with the hospital admittance specialist and the managers of the lab itself, and basically doing everything as accurately as I was told to do, they threw out my test a second time.

I can not describe to you how I felt. This test is to determine if I have a life threatening disease. (On top of my tumor) It is imperative to know if I tested in the zone for the disease a second time, so that I immediately receive treatment. However there has not been a second time because my results continue to be thrown out.

So after an enraged minute of absolute silence, I told my endocrinologist at her office (she does not work with my local hospital, but they will share info and run tests together (supposedly)) that I would do everything in my power to transport the test to them. I did care if I had to rent hotel rooms, whatever, that I was tired of traveling two hours to discover once again, my test results were in the garbage.

My doctor was supportive, so I received a kit 3 months early so I could finally take the test and receive some kind of results. I received more coaching on how to take the test just to make sure nothing goes wrong on my end. I even typed it out on my phone and saved it. Just checked, it’s still there. I admit, I have more faith in this other hospital processing everything correctly.

Part of me believes the reason my first test came back with bad results was that was the first (and last) test my blasted hospital processed for me, was processed wrong.

Well, the second point of that appointment was to be tested to see where my levels were now that I was well out of baby land. Let me tell you, it’s all high. So I have been prescribed once again, the last medication that helped those levels go down.

So it’s officially been one month since I received my medication and it’s not like I remembered. I am exhausted. I fall asleep if I sit too long. Teaching is all I seem to have energy for. I come home and I pass out on the couch. It aggravates my husband. I’m not as helpful around the house, so I know that’s part of his frustration.

Once I take a pill (2 a week) I am 100% gone. I become quiet, withdrawn, extremely loopy, and extremely bone weary. I generally crawl my butt upstairs (I look like a ridiculous giraffe, trying to amble up those stairs). Then I sleep with crazy dreams and bam! Wake suddenly and swiftly around 6AM. Then I roll over clutching the place where my dormant uterus resides.

Which is another new side effect. It’s like I have someone inside trying to get the alternator to turn over, and let me tell you, my uterus doesn’t feel like it. It hurts. A lot. Think cramps like the worst ones you’ve ever had (unless you pass out then I bet yours are worse). Now imagine they visit twice a week, all month. Sometimes they, the cramps, stay on for a couple of days, randomly making you aware of their presence.

It suckkkksssss.

One positive thing I am noticing is my hunger has been curbed. I am not starving all the time. At all. I can eat and be full. It’s really nice when your body realizes you aren’t hungry. I think about food, but instead of the need to go and eat, I think about how nice it will be to eat that for breakfast tomorrow or lunch later that day. It’s crazy. So it’s a good side effect from this pill and I remember it from last time as well.

In the past, I use to take half a dose over 4 days. As I said, now I’m taking a full pill twice a week. It’s been a month. I tried. I think I’m going to email the doctor and ask if I can try the 1/2 dose again….

Cause I’m not winning right now. I’m fairly useless.

I have a little over a month for the next exciting chapter in my brain game. In March on a Friday I will be off to the hospital to receive my first MRI since…. 2014? Maybe?

I’ll see if I can get pictures of my brain this time.

I’ll also see how the pills are doing overall controlling my hormone levels.

Someone told me I’ve lost weight last week. For a person perpetually the same weight for years, it’s pretty cool. Just to know I can physically change other than new gray hairs, lol.

Generally that means the medicine is working.

We will know soon enough. It’s been months since the Red Sea has randomly visited. I would hate all that pain to not end in at least that positive outcome, the ability to create life, and suffer for it.

Eh. We shall see. Until then, I feel my weekly second dose… it’s getting loopy… be safe my people!

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5 Comments

  1. dragonflylady77

    Oh my darling!!!
    Can’t believe the idiots threw out your test, twice!! What a bunch of incompetents!
    We have friends whose baby was born back in September with a very rare pituitary gland deficiency thing and he needs a jab every day to stay alive.
    Much love to you. ❤

    Liked by 1 person

    1. afternoonofsundries

      Oh the poor dear! The asked me if I wanted my gland out… I was like, no. Why would I want to be dependent on medicine my entire life in order to live? Then you share this and I never considered some folks have a much darker reality… poor darling!

      As to the hospital… idiots. I certainly cannot fathom doing business with them again unless the circumstances were dire. Even then, I’d worry.

      ❤️ Thank you for your support!!

      Liked by 1 person

      1. dragonflylady77

        He is 5 months old today. He was born on Tuesday night and on Wednesday night his mum thought he was a bit off and limp so they went to the hospital. Got tranferred to the NICU on Friday and he was there for a couple of weeks while they did a billion tests (incl a full body scan and some genetic testing!) before working out what it was. He has growth hormones and a bunch of other stuff incl thyroid stuff and testosterone). He has an injection and 2 liquid medicines every day of his life. But he’s a happy baby, loves solids and starting to go on all fours!

        Liked by 1 person

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