I picked this word up in the books I am reading where the main characters are Amish. I just got home after doing school with the girls all morning, running Becka to gymnastics and then running her to church for kids praise, and I just slammed down some dinner. Actually fixing dinner for myself is some progress, sadly enough, but it wasn't Lyme/food sensitivity proof so I can't fully pat myself on the back :-)
Wednesdays are our busiest day for everyone in the household. We have now been doing school for a week. Monday, I was ready to put the girls in the private school at our church. In my heart I know we are supposed to be homeschooling but it doesn't mean we don't have days like Monday where I just don't feel I can make it to the end of the school year without some massive psychological damage done to all involved. I am so blessed, let me repeat, I am so blessed that I have a husband that listens patiently. I could not do anything right now if it weren't for him. We seem to be clinging to each other right now, each for different things. Hmmmm, I believe there is a verse in Genesis about a man clinging to his wife....anyway. I am way off.
Saturday or Sunday, being bored, because I felt pretty crummy but couldn't sleep which equals bump-on-a-log, I called the patient response service to check if blood work results were in. I didn't expect them to be honestly, knowing they take a week, but I got even more discouraged when I heard, "no match found...". Wow! Wasn't expecting that. "Already kicked out of the system" was how my brain interpreted that. With the problems we have had in the past with my patient id number I figured we would have to wait till Monday when we see the doctor to get the results. This frustrated me a tad and then I thought, "do you really want to know the results just so you can stew over them till Monday?" Good point....hhhmmm maybe not. I have called everyday since. :)
So, I was slamming my dinner down, playing Words With Friends while I did, and thought I would call. I was caught completely off guard when it said, "One new message". You're kidding. I laugh as I think of the many times I have not pushed "#" after my number and there is this long pause instead of the voice saying, "No match found..." and I start to get excited that there might be a message....then I realize I haven't pushed "#". Elation spirals downward as I hear, "no match found"....can you hear Charlie Brown when he would do his little sound of frustration? (I don't know how to spell that sound or I would put it here).
The doctor said my name..."yup, thats me", ...don't laugh. We have gotten Harry's results in the past. Sometimes she doesn't say a name and you really wonder whose results those are. "CD-57 is a 46 and we want it to be 180 before we consider you done with the Lymes and your Lyme test was negative for both the IGG and the IGM bands...." Befuddled!!! Have you ever felt frustration at the same time as some other feeling that is somewhere between proud, excited, "cool", etc....I'm not sure what feeling it is. In some way I am excited we made progress on the CD-57 (proud and excited) but I am confused on the Lyme test and why I have felt so horrible, particularly this last week and a half, and just yucky with the return of symptoms since the IV came out. So, my word is "befuddled". It just fits. Why am I confused? I would be really impressed if you caught what I caught with the results. It would tell me that you are really up with the blog and what has been going on and understand some of it. We had been under the impression that we were aiming for negative bands for both IGG and IGM until our last visit where the doc explained that the IGG will always be positive, like always testing positive for mono after you have had it. She said we were aiming for no positive bands on the IGM part of the test, twice in a row. We reached that the blood work before this set of results and this frustrated me because symptoms have come back with a vengence since then. Now you tell me there are NO positive bands whatsoever on the test. I am so confused. So, on one hand I'm thrilled the CD-57 went up (though, again, she had hoped for better and we had too...sort of..better accompanied by feeling better) but confused why all the negative bands and still feeling crummy.
There is no possible way to put into words the emotions that have raged through me since the IV came out. I had higher hopes for this point in treatment. I recognize then that this means my hope was misplaced. Hope placed anywhere other than on God will always be doused and let down. Sometimes I think I don't realize I have put my hope somewhere else till its let down. This further compounds the feelings. I want so badly to have months where I feel good and don't hurt and have energy to keep up with my children, particularly one precious little jumping chatter box. I believe God told us to homeschool (and we both still believe He is saying to), and I believe He showed me what curriculum to use (which requires much out of me both in preparing and executing it...with two in two different grades) so why the resurgence of symptoms where I am in pain daily, can't think clearly (which confuses them and frustrates me) and leaves me with even less energy? My hope for true remission, as defined by me as being symptom free, are gone, and replaced with doubt and thoughts that I should accept how I feel because it is how I will be from here on out. I am 37 years old and I look normal but I slur my speech, stutter sometimes, can't process information, can't remember things, have to have someone else cut my meat up for me because I don't have the strength, lack eye and hand coordination, twitch, have no energy, my hands hurt if I do use them, a shoulder that screams when I remotely use it, calf muscle that cramp, headaches daily with piercing pain that shoots through one side, loss of strength, tender to the touch on my arms and legs, and the list goes on. I know you are saying, "it happens to me all the time" or "it happens to the best of us" or "I do that all the time". If this is normal, which based on these comments people are telling me that I shouldn't be concerned, then I have the wrong expectations for how a 37 year old female should be physically! I feel trapped in a 95 year old body and some 95 year old people feel better then I do most days. Seriously! But, then again, I have to remind myself that the problem isn't how I feel or the inconsistencies in test results or doctors comments but in the worldly expectation and scientific definitions of how a 37 year old female should be. Worldly expectations, the things the world tells us should happen or the way the world says we should be, as well as the scientific definitions are all fallible. I should be looking to God for how things should be on a daily basis. Looking to God for my daily expectations and accepting whatever He says is to be for this 37 year old body. This is difficult for me to swallow. Has my hope not truly been in Him these last couple months like I have professed it to be? Is my relationship with Him more hollow then I thought it was, lacking any true substance? I desire and yearn to strive only for Him, to live only for Him but are those hollow words if I only mean them on my terms (aka feeling well)?
I feel I have been "fake" in some sense with my blog in the last couple months because initially I meant to "be honest" and yet the last couple months there are things I have felt I can't express on here and in some essence this may have contributed to the fewer blogs. I don't know. I don't believe anything good ever comes out of secrets...ever. And by not sharing some things I feel I have had a secret or have kept a secret, and yet I don't know that everyone needs to know everything.....befuddled. Some of it is due to fear of what people would think. What if I "share" that on my blog and I'm mocked at, judged, and yet I don't have to say anything or do anything and I will be mocked or judged by someone somewhere. Do I have enough determination to live only for Him, according to His standards and expectations, daily placing this life that is not my own in His hands for Him to do what He chooses to do with it, forsaking all else, even myself? Something I have been juggling with since the IV was taken out, and the symptoms returned. Its easy to says yes when I falsely put my hope in something else, but when that something else fails I realize just how hollow I am, shallow, selfish. Its funny, because these blogs never turn out the way I initially think they will when I start typing. I never intended to get so philosophical tonight with this entry. I am my father's child......but I am also my Father's child. Sometimes I think He intended these blogs to be communication between me and Him. To everyone else they are ramblings and I appear in left field and crazy but to my Father I am precious. Difficult to grasp most of the time. I have got to clean out the worldly expectations that the world has brain washed me with and download and install God's expectations and then I should run more smoothly,where I am running off of a focus solely on Him and what He thinks and not on the fears of this world and what they think. Befuddled....still working on that.
