All in His timing...

First I want to thank everyone who prayed about my doctor's appointment yesterday. I know God was with me during the appointment. I know He helped me voice my questions and understand the answers I received. Overall it was a good appointment because God gave me a sense of peace about my situation.

The doctor and I discussed the seizure I had last week and she said that it was not a myoclonic seizure (the type I have had before when I was low in magnesium). When I wrote about my seizure on here honestly I was still "out of it" mentally. It took a few days and talking with my husband (and some of the nurses who were there during the seizure)to fully understand what had gone on. I had written that it lasted about 20 minutes. Apparently I was wrong. I did lose consciousness a few times during the episode but not for long periods of time. I did have a "generalized seizure" which I believe just means a seizure that is caused by something other than epilepsy. It was a "grand mal" which is where your entire body is involved - that would explain my arching my back and repeatedly slapping it onto the tile floor. I didn't really feel "like myself" again until Monday or Tuesday.

M and I talked it over and we both felt that the main cause was a extremely bad reaction to a new medication that I started almost exactly 48 hours before the seizure. I had told him before my afternoon treatment session on Friday that my "brain felt weird" and that I was "feeling crazy" and something "was seriously wrong in my brain". The oddest thing to me was that as soon as I heard the name of the medication I was changing to I thought, "I don't want to take this." Then, every time I had to take it (which was 3 times a day) I thought, "I really don't want to take this pill." I even said as much to M a few times. I've never felt that way about a medication before. I feel God was with me and was trying to give me a sense of urgency about telling the nurses what was going on that very day since it was Friday and both the doctor and nurse practitioner were in the clinic. I talked to the nurse and then I believe it was about 20 minutes later that the seizure started. I thank God I was actually at the clinic in treatment when it happened.

In my appointment yesterday the doctor agreed that the medication was most likely the cause of the severity of the seizure and likely why I had it in the first place. However, I also found out that more biofilm has broken up (YAY for that) and that it has let loose another strain of Influenza A & B (BOO for that). I was told that people like me whose immune systems are shot are more "vulnerable" to actually having seizures when they have active flu because the flu attacks our brains in a way. It's not like how most people get the flu and have fever and feel like death for 4-5 days so don't think that the next time you or your children have the flu that a seizure is just waiting to happen!!! I'd hate to scare anyone like that!

Another reason this seizure could have happened is that my brain is trying to function again. I wrote back in June about my brain spect scan that showed I was basically getting no blood or oxygen to certain areas of my brain (temporal lobes, anterior lobes and frontal lobes were all affected to varrying degrees). The Heparin (blood thinner/anti-coagulant) has helped that immensely which has led to me being able to speak without stuttering and has helped my heart to beat more normally. So, the good news is that my brain is trying to work properly again. The bad news is that as this happens it can cause some of the messages to "misfire" because it's been a long time since these areas have had a lot of activity going on. Basically, my brain is trying to fire messages across the synapses but at times it won't happen properly and it will be like a fuse blew out in the circuit board of my brain. This can cause seizures as well. But, knowing that the seizure might actually be showing me some progress in my brain activity makes me feel better about having it! Since we can't be certain that it was only the medication causing the seizure we will stay on the anti-seizure drug and that's fine by me. I take it at night and it's helped me to sleep better than I have in awhile! I need all the sleep I can get in order to physically handle what these treatments do to my body so I'm all for more sleep!

We also found out that I am still low in my overall blood levels (but just by 0.5 instead of 6 like it was after the emergency surgery) and this means I'm also low in my red blood cells. We believe it's still low because my left ovary is having a hard time learning how to function on its own and therefore I've had 5 menstrual cycles in 7 weeks. If this problem is still going on after next week (which will be 2 months since the surgery) then I will go back to the ob-gyn to see if we can do something to keep me from losing so much blood. So sorry if that's TMI for you, but hey, I don't sugar coat this stuff...haha.

The doctor and I also discussed how hard treatment is on my body and that it isn't something that can be rushed. As one friend who has gone through this same treatment put it "having x number of IV treatment sessions doesn't equal out to only have x number of IV treatment sessions left to go" - which is hard to fathom because you want so badly to have some way of knowing when you will be done with the IV treatments! But the doctor has told me that even once I am home I will still be "in treatment" because I will still be on oral antibiotics and supplements for another year or two afterwards. All of that made me realize there's no need for me to try and push my body or rush this because no matter how fast I'm done with the IVs, I've still got a long way to go after that. With all of that being said the doctor brought up the idea of me picking one day a week where I only did the afternoon treatment session and allowed my body to sleep in. I don't think I want to take that step yet, but don't worry, I'm not making any decisions about it quickly. I'm going to see how I feel over the next week or so before letting them know what I want to do. I do know that I am trying to figure out the difference between effective treatment versus treatment that is just too much for my tired body.

I don't just get IV antibiotics, I also take 2 different antibiotics in pill form and of course I have my weekly Bicillin shots which equals 4 different antibiotics total. We've decided to stop the weekly Bicillin shots for now and we're going to decide over the next week or so if I should stop one of the orals so that my body would only be dealing with 2. I am hoping to be able to stay on both orals though because when that biofilm breaks down all sorts of things come out. You all know there are some antibiotics that are best for sinus infections, some work best for pneumonia, etc., etc. Well, by being on 3 different ones I am better able to fight and kill off whatever might be popping out of the biofilm.

I am happy to know that I am making some progress although it is at a much slower pace than I want. I am beginning to understand that God's plan may very well include my healing, but it will be in His perfect timing and not my own. The doctor and I already know that I won't be coming home for Thanksgiving because it's too risky for my immune system. While I hate to miss out on seeing my family and friends - not to mention just getting to sleep in my own bed and be in my own home, I know this is the best thing for my health. I know God can work miracles and I believe I see many of them every day, so I know that things could be much better by then. BUT...I just have a feeling that I will be here awhile - maybe it's more that I have a feeling that God's plan includes me being here for longer than I had thought or hoped.

No matter the length of time, I know God's plan is the best. God is good and He has plans for my life that I cannot even begin to fathom with my finite mind. I know that this is a very hard time for me - physically of course - but I think it is supposed to be a time of growth for me mentally and spiritually. I think after all of this is over, I will look back to this time period in my life - this time spent in treatment - as a time that I learned what strength really was as well as understanding that weakness isn't what we all take that word to mean these days. I should show all my weaknesses because it is through my weaknesses that God can show His mighty strength. Knowing that I am so weak, knowing that there is no way I could do this on my own, letting you all know that I am no superhero or even anything close to that - it allows both me and you to see who is really keeping me going, who is really carrying me when I am too weak to even stand - and we all know that is God. It is His strength I cling to, it is His plan I want to follow, it is His will that I want to heed. I love my doctor out here, but I know who gets credit for my healing and it is God, the Great Physician.

Wanted to share the lyrics to this beautiful song by Ginny Owens. A friend in treatment shared this song & once I heard it I thought when I have those "Why me? Why now? Why is this happening, Lord?" days or moments, this song is a beautiful reminder of His perfect plan. We don't always get to see the "whys" but that doesn't mean we shouldn't follow where He leads us because God is good and He loves His children and while He never says we will have an easy life, He does promise to always be there. So this song seemed like a good ending point to this terribly long entry:

If You Want Me To by Ginny Owens
The pathway is broken
And the signs are unclear
And I don't know the reason why you brought me here
But just because You love me the way that You do
I will go through the valley
If You want me to

CHORUS:
Now I'm not who I was
When I took my first step
And I'm clinging to the promise
You're not through with me yet
So if all of these trials bring me closer to You
I will go through the fire
If You want me to

It may not be the way I would have chosen
When you lead me through a world that's not my own
But You never said it would be easy
You only said I'll never go alone

So when the whole world turns against me
And I'm all by myself
And I can't hear You answer my cries for help
I'll remember the suffering Your love put You through
And I will go through the valley
If You want me to.