Dazed and confused...

This may not be my most inspiring post but I had to update you all. It's been a rough week (and yes, I know it's only Tuesday) and I'm needing many prayers for my doctor meeting Thursday morning at 8:00 a.m.

So, what's been so rough? Well, I'm not completely certain, but the Mepron and Babesia are having a continued battle in my body that always seems to end with me having a grand mal seizure. I had one Friday afternoon. However, my seat mate & coolest girl ever, S, and I had made a "contingency plan" if another seizure were to rear it's ugly head. Instead of me trying to make it to the nurses' station our plan was that I would tap S on the arm and she would help me slide onto the floor while one of our other treatment friends, or S herself if need be, called out for help. While awaiting the nurses we planned for S to grab the 5+ memory foam pillows I use to try and make my chair comfortable and start shoving them under & around my head first. Then grab my down comforter and some of her own pillows and whenever I arched my back up she would be shoving those under my back and rear end. This was a brilliant plan and we pulled it off almost flawlessly on Friday afternoon. The one thing we hadn't counted on was my IV pole being in the way. The poles have four "legs" that come out at the bottom and the wheels are on the ends of these "legs". When I slid down onto the floor my right shin bone hit the IV pole and made a pretty good scrape and a nice knot with some bruising. However, this was a much better outcome than the hematoma (sp?) that I had on my hip from my last fall onto the tile floor. Also, I was able to feel this one coming on a bit sooner and therefore had the Valium injection faster so while it wasn't fun, it definitely seemed a lot easier on my body than the last 2 seizures.

I had IV fluids that day and the day after for both treatments. I was still sore, but not as bad as before. So, we marched on forward as we IV patients tend to do. I knew that the fact that I had seizures on my last 2 Mepron days was not a good thing. I worried that it would happen again on my next Mepron day. But, the doctor had basically told me that we HAVE to fight this Babesia because it may very well be what is causing a majority of my cardiac issues. So, as hard as it is, I want to get rid of the Babesia. The doctor had increased my anti-seizure medication already, but Tuesday I got another anti-seizure medication prescription. As she put it this one should, "really slow your central nervous system down". I knew it had to be a fairly strong drug because you start with 1 pill at bedtime every night for 2 weeks, then 2 pills at bedtime for 2 weeks, then 3 pills at bedtime for 2 weeks and then finally we will reach my dosage of 4 pills at bedtime every night. I started it on the 10th so I have only had 1 week of it in my system. Still, no one said to skip my Mepron dose for today and I went ahead and took it hoping that the anti seizure medication increase along with the newest anti seizure drug would help ward off any seizures or tremors.

Well, I was wrong. Not quite sure exactly what "triggered" this one, but it was blood draw day - the one day every week where we have our blood drawn for CBCs and Chem panels. Today I had to have about 6 extra vials taken though because the doctor is sending those off to the lab that gave me the "neon biofilm picture" and re-testing some things to check and see if we've made much progress, or any progress for that matter. So, I had eaten a good lunch at 2:15 or so and at 3:00 had my blood drawn. I went into the hallway and sat in the floor with the other IV patients from my treatment room. We have to wait for a nurse to be present before we can enter the treatment rooms and so this "hallway congregation" happens often on blood draw day.

Oh, sidenote...I haven't mentioned that my sweet husband, M, got me the Bose noise reduction headphones since my seizures have seemed to be triggered by sound lately (love him for all he does). I still have to use ear plugs with them to make most noise go away, but they are extremely helpful for changing the pitch of some noises and softens most as well. Alone I can still hear people talking to me, it just doesn't seem as "shrill" or as harsh.

Okay, so back to me sitting in the hallway. I started to realize that the noise of the people talking and laughing was causing my brain to freak out. I looked frantically for my headphones only to realize I hadn't packed them into my backpack like normal. Another sidenote...it snowed here this morning - yes, this Alabama girl went to treatment this morning in a car with an inch or so of snow on it! It was too warm for it to cause any trouble on the roads, but still, snow in November is an oddity for me! I blame this odd weather for my forgetting my headphones this afternoon because I normally wear them to treatment but didn't want to get them wet since by this afternoon it was raining, not snowing. When I couldn't find them I literally had to get into the nearest bathroom as fast as possible and close the door and put my hands over my ears. I took my phone with me so I could call mom and see if she could bring the headphones to me. I called and she sweetly and quickly brought them. I texted S and asked her to tell the nurses where I was and she brought my IV pole into the bathroom for me and got the nurse who so kindly started my IV while I sat in the floor of the bathroom crying. That happens a lot when a seizure is about to happen. I will have a strong emotion, anger or crying, but this time I felt the crying was justified because I LOVE to hear people laugh. I love to MAKE people laugh. Yet, here I was running into a room with my hands over my ears because people were talking and laughing. Yet again I started to think about all the things these multiple diseases have stolen from me. How they have changed me into a person I don't even recognize somedays. My sweet nurse let me cry about it and sat with me until mom came with the earplugs and headphones (I keep them in the same case). I explained as best as I could what happened to mom but I knew I wanted to get her out of there because I felt that a seizure was coming. So far M has only had to see the tail end of one seizure and Mom has seen one try to start, but THANK YOU GOD, neither have had to see the full blown episodes. I continue to believe it is harder to watch someone have a seizure than to actually have one yourself.

So, mom left and I went into the treatment room and got in my chair. I don't know that I was there for 5 minutes before I thought, "I need to go get the nurse to give me an Ativan shot and maybe we can keep this from happening." I should have just gone with the contingency plan S and I had made. By the time I was in the nurses station trying to ask for the shot, I knew it was too late. I sat and then slid into the floor and the nurse practioner, the head of the IV nurses, and 2 IV nurses all worked amazingly well and quickly to get me into a position to get the Valium shot (Ativan doesn't help once the seizure starts) and they also ran and grabbed most of my "chair bedding" to try and keep my body from crashing into the tile floor. I did not lose conciousness and I honestly think it's due to all the focused breathing I've had to learn to do over the past 16 years of passing over 100 kidney stones. I don't like the idea of someone else being in the driver's seat of my brain and I fight very hard to keep control or to keep focused so I don't lose conciousness. However, even with the shot being administered within the first 10 minutes of the seizure, it still lasted close to an hour. It doesn't hurt when you have these, but knowing how much you will hurt later makes you want to try and keep your body from flailing about as much as possible. I tried, but still came home with new bruises and I know if I were to go to the E.R. for something right now they might be suspicious about spousal abuse - haha.

Again, during this seizure I prayed aloud to God. I thanked Him once again for always being with me, for allowing me to feel His presence during times of crisis. I thanked Him yet again for the wonderful nurses who hold me, pet me and tell me how much they care for me. Although I would of course, rather not have seizures at all, I thanked Him yet again that for the 4th time, I was right where I needed to be to have a seizure. I was where there were caring people with the training and medication needed to help me. I thanked Him for allowing me to feel peace in the midst of the chaos that is a seizure, for allowing me to hold onto my sense of humor instead of just crying and screaming about whether what I go through is "fair" or not. Everyone has their own cross to bear. I've just made mine public knowledge. I don't think what I am going through is anymore important than what anyone else is going through. I just know God wanted me to write about it. So, I do. I pray I write the words He wants and I pray that every person who reads what I write knows that it comes from the Lord and not from me. I pray that in some way every person who reads this is blessed by it, that they read it and think about what they have to be thankful for in their own lives - even if they are in the midst of a "dark time". I pray for all of you who are praying for me and that is how it should be. The body of Christ should pray for everyone they know. They should pray for people who are having obvious problems and for people who seem to have it all together because no one has it "all together". We are to spread God's love here on earth and I want to make sure I do that. This blog is just one way. I pray that I get to become healthier and can do much more to spread His love than to write from my sick bed, but I know for now this is what He is leading me to do, so I do it and humbly pray that I do it justice.

So, I know this has been long. I've decided I just can't write a "short entry" and have stopped giving false promises about this. BUT I NEED YOUR PRAYERS!!! I will be meeting with my doctor Thursday morning at 8:00 a.m. and I am praying for God's will to be clear to me. For God to speak through me and that He will allow me to know if this is the right place for me. I know He led me here, but I am unsure as to what His plan for me being here includes. It could be for my healing, and we pray for that, but I have given my life over to Him. I have prayed that His will be done and that doesn't always mean we get what we believe to be the best outcome. God uses so many things to teach lessons - both good and bad things. I know He wanted me here and I pray He will let me know if I should stay or go. If you're wondering why I would leave, well, honestly, this body of mine is so very tired. It's been fighting hard, but it is showing the wear and tear of years of battle. So, I want to know if my expectations and the expectations of my doctor are on the same path. I also want to know just how hard I should push my body before saying, "THAT IS IT! ENOUGH ALREADY!"

It's hard to make these decisions when you are in treatment because your brain isn't working well. So, I pray, and I ask all of you to pray, that God will let His will be known to me as far as what to do next. How far do I go in search of good health? How much can one body handle after 30 years of illnesses? How do you know when "enough is enough". I know you have to get worse before you get better. I've said before that this treatment is similar to cancer treatment in that you never feel good during it (as cancer patients feel so much worse during chemo or radiation therapy) but you have to keep comparing the lab results to see progress because your body is never going to feel "good", sometimes it won't even feel "better", while you are "on the drip" as they call being on IV meds.

Finally, I want to thank so many of you for your cards and sweet notes of encouragement. But, you don't have to send get well cards - you can simply write a comment below any of my posts to let me know you are keeping me in your prayers. I feel your prayers and God uses all of you in such a powerful way in my life. I have so many people to thank for their love and support and trust me, when my brain starts thinking clearly, you will all be getting some sort of thank you note!!!

Now for the "real word" and that to which I cling the most - God's word:

"There is surely a future hope for you, and your hope will not be cut off." Proverbs 23:18

"Be joyful in hope, patient in affliction, faithful in prayer." Romans 12:12

"As the heavens are higher than the earth, so are my ways higher than your ways, and my thoughts than your thoughts." Isaiah 55:9

"I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." John 16:33

Much love to you all & MANY PRAYERS for each and every one of you!
K