The ups and the downs

Up and down and up and down. It's never ending it seems. I try so hard to stay positive, but then I wonder why it is HARD to be positive? After my 8 hours of feeling good on the IV fluid things went downhill (yes, again) and I had a really rough day yesterday. I feel like someone has been punching, or perhaps kicking, me in the kidneys. Last night I gave in and took a Demerol (which I RARELY EVER DO) in order to just have a "dull constant pain" instead of a "miserably unbearable sharp constant pain". I had some bad muscle spasms yesterday and they wore me out. After over 100 kidney stones one would think this kind of pain would just be old hat for me. In a way it is and that makes me sad too.

So, I'm having a down day, a low period following that "good feeling". It's a wonder M can keep up with my mood swings because they are usually based on my pain levels. I'll just say he had no problem with me taking a pain killer last night - ha! Honestly, it is hard on him to watch me hurt and feel helpless to fix it. I get that & I love him even more for feeling that way.

I know I should not worry, I should not fear. God did not give me a spirit of fear & I know that. But, I'm working with an "altered brain" and it wants to fear and it loves to worry. I pray, and I find peace through that, but then that worry will pop right back up as I try to beat it back down. The pain is not what I worry about though. I am so very excited to see the kidney doctor tomorrow, but I am also worried. Scared that he won't understand what I am going through. That he will be one of the MANY doctors who say Lyme disease does not exist in Alabama. So, pray that he will hear me & M as we explain my ongoing battle. Pray that whatever tests he runs and whatever medications he wants to put me on won't do any more damage to my tired body.

My "altered brain" is a source of fear in itself. I cannot begin to describe how difficult it has been for me to watch as I slowly lose my "way with words" and my ability to read them aloud or pronounce them correctly. Words are like air to me - I breathe them in rather than read them and I when I write or talk it is more like exhaling. They are a part of me. Always have been. I talked early as a child and some would say I haven't shut up since - & they're probably right! I started reading around age 4 or 5 and I inhale books at a frantic pace. Or, at least, I used to do so. Now I find myself re-reading the same page or even the same passage over and over because I'm "not getting it". That is so unlike me and it forces me to see that whatever this disease (or diseases) is (or are), I am losing the battle and they are gaining ground. I write when I can't find another way to cope with what is going on in my life. I kept journals from the time I was 13. You would think that this - ALL OF THIS - would have given me enough to write a novel. Yet, just writing these posts can take me hours. I sit and stare at the screen trying to think of a simple words like "connected" or "describe" in order to finish a sentence. I hate this more than the pain itself.

However, I will say again that God is GOOD! And for me to be able to write that last paragraph was nothing short of a miracle. It's been a long while since I felt like I was able to be that descriptive about what is going on. I pray that I will get back to that place where words flowed fast like water in a river rather than being slow like molasses. I pray that tomorrow will find me in a peaceful state of mind and not one of frenzy as I meet yet another new doctor and go over my story AGAIN.

I actually need to stop writing this so I can use what energy I have to print out all the lab work, CT reports, etc. from the past 3-5 years since Dr. G says the kidney doctor will need to see ALL of it. I never knew that being a patient could be a job in itself, but I've found I'm an expert in organizing medical records. When I do get well I think I should start a business as a "consultant" for physicians' offices. You know, go in there and train the staff on how to actually run an office. Because I've been in hundreds of physician's offices and somehow NONE of them are organized or run efficiently at all. Perhaps I've found my calling?? Probably not though. Because if & when I am through all of this, I can't imagine WANTING to set foot inside another doctor's office! :)

I'll get through these ups & downs...I'll get through tomorrow's doctor appointment...I'll get through these next few weeks until I can head to Kansas City. I know I will because it's what I've done my entire life - I've GOTTEN THROUGH IT! How? Well, I used to think it was because I was strong, or smart, or that I could handle things that others could not. But I know better than that now. I get through it because GOD gets me through it. He will carry me through it all and I am forever grateful to know He is with me during both the up and the down times.

I lean on Him and I cling to this: "Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God which transcends all understanding will guard your hearts and your minds in Christ Jesus." (Philippians 4:6 & 7) And believe me, I start my prayers with THANKSGIVING!!! I am truly thankful for each one of you who cares enough to read my ramblings. Your kind words and prayers are so precious to me. They help to give me the UP feelings when those DOWN feelings are trying to press in all around me. I truly am thankful to God for all of you.