New routines

I haven't forgotten to write in this blog. I've simply been too overwhelmed with all of the changes going on in my day to day life. I've been waiting to hear God tell me when I need to write something else about what I'm going through. However, since it has been so long, I wanted to give you all an update.

I am home and the two day drive took its' toll. My husband rented a minivan that the middle seats could fold down into the floorboard and the big back seat was where I made my "nest". I had two twin memory foam pads, blankets, my eye mask, and most importantly we drugged me to the hilt to keep my central nervous system from going haywire. We broke it into 6 hours of driving one day and 6 hours the next day. I was exhausted and believe me, not one single suitcase or box has been completely unpacked.

We saw the doctor here and I came very close to having a seizure in his office. The noise of people walking down the halls of the hospital, the ding of the elevators, the flourescent lighting added to the stress of my first meeting with this doctor - well, by the time he came in I was a wreck! Thank the good Lord above that I took my Ativan with me so while I had a lot of shaking and tremors I did take the Ativan in time to stop a full on seizure. He has me on the same regimen as my Kansas City doctor - IVs twice daily, prescriptions, etc. He said I was a "very difficult case" and that we would need to come back this Friday for a real exam. I was shaking too much for him to be able to do anything but check my blood pressure and listen to my heart.

IV home care is good for me because I'm not dealing with the noises of the clinic, but I'm having to get used to the new equipment, bags, etc. that this company has. I have a nurse come once a week to take my blood and do a dressing change for my PICC line. The stress is still there though because running your own bag, wrapping up your PICC line, remembering everything I have to do while on IV Benadryl is all overwhelming. M and I are trying so very hard to adjust but neither of us deal well with change. He's used to being here and working in his downstairs office all the time. Now he has to check on my, feed me, sometimes help me with IVs, etc. I feel like screaming when I think of all he has to do for me! I'm still battling seizures in the afternoon as my temperature will go up to 101 and that makes everything worse.

Good news is that I am HOME - I am FINALLY HOME! Even though no one can come see me because when I get excited I may be fine in the moment but will often seize a few hours later. That's the hardest part of being home - I want to see my family and friends, but I just can't do it right now. God is still working on me and my control issues, my handing over my fears and stress to Him, and He tries to get me to focus on Him - but I sometimes forget. When I look away from God I get angry about this life. I"m writing this with my oxygen mask on and staring at an empty IV bag from this morning. It's hard - it's not something I can just jump into, but I know God will provide for me and never give me more that I can handle!

Now I'm off to nap - here's my daily verse. One of my favorites that I know I've used before but it seems quite fitting for the day I'm having:

"Blessed be the Lord, who has given rest to his people." 1 Kings 8:56 (NRSV)

Much love to you all-
K