Days I wish I could forget...

I think sometimes people don't really grasp what all is going on with me because I HATE writing entries that are "downers". However, after much thought on the subject, I think I have to write the whole truth about how I'm doing right now. Why? Because I need the prayers.

The truth is that I am in constant pain. My hands hurt to the point where I really don't want to be on the computer often and sometimes I wear gloves inside the house and at treatment. My feet hurt to stand on and my knees don't always work well. I hurt more than I have in a long time. The doctor says this is good because it shows that the medications are killing the bacteria and the dead bacteria becomes toxic in your blood until it is flushed from your body. The toxins are what make your symptoms so much worse. It's called a "Herxheimer reaction" - might want to check my spelling on that one, but you can google it and probably get a decent definition. Anyway, it means that getting better means getting a lot worse first. I knew this coming into treatment and I accepted it then and I accept it now. It's just hard on me.

Yesterday right at the end of treatment my body started to show signs that it might be trying to have another seizure. My sweet nurses checked me over and gave me a shot of Ativan and more Heparin to help see if we could keep it "at bay" and we did. I had a lot of right side tremors but nothing close to the grand mal seizure I had a month or so ago. I am very thankful to God for making me say something to the nurses. I really hate to complain. I hate to "be sick" or "feel bad" in front of anyone. Is that insane? Probably. However, after 20+ years of doctors telling me I didn't have anything wrong and sometimes even my supposed "good friends" acting like I was being a hypochondriac - well, you end up with someone who hates hospitals and never wants to "act sick" for fear that people think I'm doing just that - "acting". The past few years we at least had doctors who would tell me there was something wrong with my immune system, or my heart, or my kidneys, but then they would tell me they weren't sure what it was. I'm afraid all of those times have left me "scarred but smarter" as the saying goes.

Anyway, I am not doing well physically or mentally and I am asking that you pray even more, if that's possible because I know how much everyone is already praying! I thought if I gave you an idea of what my "typical day" consists of, you may know how to pray more specifically. So here goes:

Mornings:
I wake up around 5:45 a.m. every day of the week and I want to cry because my body hurts so much but I don't have time. I have to get up and eat breakfast, take my medications, dress in heavy layers (most mornings over the past 3 weeks have been in the 30s & 40s). Mom (or M if it's his week here) drive me to treatment by 6:35. I get hooked up to my IV and sit in a chair that mocks all of my efforts to make it comfortable. I usually can't sit still very well because I hurt. By 9:00 I am back at the apartment taking more medications and trying to get at least 2 hours of sleep.

Afternoons:
I wake up and take more medication and try to eat lunch around 1:30 or 2:00 so it will be close to when I have to go to afternoon treatment. You don't want to go to treatment on an empty stomach because you will get nauseated and you may even throw up. I then try and find something warm and comfortable to wear because even if it's 70 degrees outside the air conditioning in my treatment room makes it around 60 degrees. Honestly, one day it was 56 degrees outside and the air conditioner still came on. Don't ask me - I just get treatment here. I get there around 3:00 and get home right before 6:00.

Evenings:
Once I'm at the apartment I may have to take some medications that are taken on an empty stomach then wait 30 minutes before eating dinner and taking the meds that I have to take with food. Now that I'm treating the Babesia one of my meds has to be taken 1 hour away from all other supplements and medications so 1 hour after I take my dinner pill I have to take this medication with 4-5 ounces of grapefruit juice. Then I have to wait another hour before I can take my bedtime medications. Sad to say that even with the Ativan, Valium and anti-seizure medications I am not sleeping well at all. I may fall asleep around 1:00 a.m. which gives me 5 hours before I start the whole cycle over again.

Now, that's my schedule time wise, but it doesn't really go into what all of this is doing to me physically or mentally. I am sure you can imagine I'm exhausted. IV antibiotics make your brain feel like jello - you can't think well or focus on much. Add to that the anti-anxiety medications, the IV Benadryl (this is given to help with Herx reactions so I wonder how bad things would be if I DID NOT take it), and the other oral antibiotics, the new antifungal medication for Babesia, the anti seizure drugs, etc., etc. - it all adds up to me having a short fuse and wanting to cry a lot.

But I try hard not to cry. Why? Because crying would only make my headaches worse and I still (yes, even after all of this) do not want to throw my own pity party. Maybe that's why I try so hard to only give the good news or spin things to show only the positive side? Or maybe it's because I still feel thankful to have made it here alive and to be receiving treatment at all. There was a good 4-6 week period before we got here that we weren't sure if my heart would keep on beating, that I would get here in time to be treated. I think I cut it close, but I had full faith in God's plan whether it included me getting treated or going on to heaven. I still have full faith in God's plan. Just because I am having a really hard time right now doesn't mean I doubt His plan in the least. God is good. I know this. I am thankful for every day I have even though so many of them are filled with uncontrollable pain and a sadness that seems to be sinking into the core of me. I think that's part of the process of treatment.

I think that God will use all of this to strengthen me mentally as well as physically. I also think God is trying to get me to open up more. To let other people in on what is truly going on here. While I love to lift people up, I think God is wanting me to see that it is not a sin to show your weaknesses and He's shown me I have plenty of those! I used to never like to think of my "shortcomings" but now I know that if I don't show those - if I don't allow you to see how terribly weak I really am - if I continue to let you think that I wake up every day excited to head to my next treatment session, well, I am stealing the glory that is meant for God. He is the one who gets me through every day. He is the one who is counting each and every tear I cry. He is the one who gives me just enough energy to be able to be somewhat upbeat while I am around the other patients in treatment. He allows me to make them laugh and helps me to perk them up. Then He continues to be with me as I go home from treatment physically exhausted and emotionally spent. He is with me all the time - this I know. He is in the darkest valleys and He is trying to tell me that all I need to do is stop trying to do it all myself and allow Him to carry me through this time. I think I have to take Him up on that offer, because honestly, if it were up to me I think I would have quit a long time ago.

This is the hardest thing I have ever done in my life and for a woman who has passed over 100 kidney stones - well, that says a lot. These are my "cave days" meaning like the days that David went into the caves to hide from Saul who wanted to kill him. David listened to God then and God brought him through those days. I am trying hard to listen only to God right now, but the side effects of the medications make that really hard most days. I pray that God makes His will so clear to me that there is no way I could mistake it for anything else. I know He is with me and He hurts for me. He hurts for all His children. However, I feel that coming through all of this will strengthen me in ways I can't imagine yet. I pray for His guidance to surround me and for me to bring His light to everyone I meet or see. I'm not the only one having "cave days" - there's a whole room of other patients who are going through the toughest time of their lives too. So pray for all of us.

These may be days I wish I could forget, but I know that the lessons I learn throughout this journey will be ones that I will cling to for the rest of my life.

I thank each one of you who takes the time to read these entries, who pray for me, who just think about me even. It means more than you will ever know and I am certain God has placed certain people in my life here, just as He has placed this blog in front of other certain people so that we all might pray for each other and find strength and comfort in Him.

I'll end with this verse from Isaiah:

"In returning and rest you shall be saved; in quietness and in trust shall be your strength." Isaiah 30:15 (from NRSV)

Much love to you all-
K