Doctor's Appointment

The weather here in Texas (at least southern Texas) has been absolutely beautiful!  So beautiful that the snakes are coming indoors and we are going outdoors. Okay, seriously, it was one snake and it did "kick us out" of the house till Daddy came rushing home on his black stallion (aka honda) to save the day. All before 10:00 this morning.  Actually, I think the nice weather caused the business next to us to finally weed eat their property (and they started kindly before 7 this morning...still going and its 1:30...they did pause for lunch ..generous...keep in mind to most this isn't a big deal but the non stop sound grates on my nerves) which chased the snakes to our leased acre, and one found its way inside our house, which chased us out, brought daddy home and the thing found its head crushed.  We just finished  studying the Fall in the Garden in Bible and History and we recounted the "serpent" in the story as we peered through the door window at the snake in the house, waiting for daddy to come save us.  I love the country but I am a city girl through and through unfortunately. I believe that the inside of my house should be my "sanctuary" which means no none humans please.
Whew!!! Still beautiful outside!
Mondays appointment with the doc went well.  I left the appoitment encouraged. We went in with questions (as always) and came out with answers.  About a week ago I began compiling a list of the returning symptoms knowing if asked "what symptoms" I woudn't be able to recall on the spot. I was amazed at a page long list of symptoms. I did notice that most of the symptoms that have gotten worse are neurological in nature.  I copied the list and gave the doc a copy.  She examined it pretty thoroughly and didn't seem surprised by it.  It was explained to us that, yes, the Lyme test was negative on both parts but that the top wouldn't remain negative in the future and that it would be positive for the rest of my life.  I understood it correctly then, and I chalk up the top being negative to the fallicy of the test.  It is not a 100% sure proof test.  She said that the flare up of symptoms is most likely due to  the bacteria coming out of the tissues, or cyst form, which is a good thing. The bacteria can "hide" in the cyst form and very little touches it. The Flagyl that I am on during the weekend is suppose to target the cyst form. She did ask if the weekends appeared to be rougher and I said yes.  As far as the 3 antibiotics, she doesn't want to change anything up since its still showing signs of effectiveness.  We did ask about some of the other meds and found out that, after 9 months of taking it, that I didn't need to take the Cyclobenzaprine which is a muscle relaxer, every night.  So, I haven't taken it the last two nights and I feel more clear headed during the day. My only concern is in a week or two when its out of my system what the muscle cramping will be like. I have been taking a powder called Reliv that a lady at church gave me to try. It has all kinds of vitamins, etc.  I think I have seen a small difference in the muscle cramping when I take it daily...literally. If I miss a day the calf muscle in the right leg cramps.  Ah, I just remembered a question we meant to ask and I don't think we did. If we did, I don't remember the answer. The question being is it typical for most of the symptoms to be on one side?
We did bring up the new symptom which was the sharp pain above the right ear and she looked in my ears (yes, the doc actually got out her stethoscope and examined me...first time I think...of course this was after Chris asked the Assistant if this was normal for her) and she said the right ear wasn't infected but it was "caved in", if I remember correctly. She looked at the left ear and said it looked worse and asked to clarify which side I had the shooting pains.  She asked if I take anything for allergies and I mentioned I may have some of my nasal sprays left from last year and she said, no, and gave me a 10 day supply of Xyzla.  Not sure what we are supposed to do after 10 days, Today is day 3 and I really don't notice a difference in the allergy symptoms of drainage but the head episodes have been fewer.  We'll see what happens.
The shoulder was brought up again, and for some reason it caught the assistants attention this time, where it really didn't peak the doc's interest last time.  We again, explained that I had xrays and MRIs on both shoulders last spring that showed bone on bone in both shoulders equally.  This is what tipped docs off that this thing was systemic and not just my right hand.  The assistant began collecting information and requesting those reports while we were seeing the doc.  We didn't hear anything before we left and haven't heard anything since and probably won't until I call several times to inquire....just seems to be the track record.
I really liked how the doc was being proactive with the allergy stuff and also in giving a flu shot, trying to give my body every chance it has to feel good, especially since the immune system is not up to par.  Our next visit is Nov. 1st. We did not walk out of the office with lab requests like we did last time.  It may have gotten lost in their quest for MRI reports. Not sure.
I think that is all I remember.  We had a pretty good day of school yesterday which made me think maybe we had turned a corner and have began to find a routine and groove. But, today was back to "rough" but the snake didn't help matters any.
We had an answer to prayer Monday after the doctors appointment.  Our AC has gone out twice.  The first time it went out we were told we needed a whole new system, with duct work, etc.  Yeah, we knew what the landlord would probably say on that.  The second time it went out the AC people said the same thing.  By this time we were frustrated with super high electric bills knowing it would probably be cheaper with a newer unit but there wasn't anything we could do but pray, and pray we did.  Sunday, it ran all day and it was cooler outside then inside...go figure. Then Monday we got the call that they will be replacing the AC unit and they are scheduled to come tomorrow.  Such an answer to prayer.  Between a new unit and the gorgeous weather (minus snakes, hopefully) we are hoping for lower electric bills which would help so much financially.
Just can't beat the weather we've been having. The girls have been outside playing. Funny how they will tolerate bugs better when its cooler outside. Unfortunately, the bugs still love them.
Today is Wednesday and its our busiest day.  Get through Wednesday and its home free till next Wednesday.  I am staying on top of my naps, especially as I get in snuggle time with the girls. I nap with Maddie on Monday's and Becka on Tuesday. Wednesday I don't get one and Thursday and Friday everyone is on their own....sometimes.  I'm trying to turn the lights off at 10:30 and eat what I supposed to.  All in effort to push through and come out on the other side of this lyme colored phase of life. Taking it one step at a time and only by the grace of God.

Befuddled

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.

I May Appear Normal.....

Is anyone really "normal"?  I may appear normal on the outside but I'm anything but normal on the inside.  The last three weeks have been frustrating, discouraging and an emotional rollercoaster.  As more people comment on how good I look I am constantly reminded throughout the day that I am still Lyme Green on the inside.  I'm glad I can look good while I feel crummy...surely that has to be a talent, right? Nope! Its God's handy work of grace painted all over the outside of me.  I'm glad I look good. I wouldn't want to look bad or droopy or morbid or something.  But at the same time it has been down right frustrating.  This August and September have been very difficult emotionally as Fall draws near and all the stuff that goes with it starts up.  I more often then none feel as if the world is spinning on without me as bible studies start along with other activities at church that I love to be a part of and I'm not.  I think I also had high expectations for "August" on how I would feel after 8 months of "treatment" and I don't feel a whole lot better then this time last year.  I also feel the weight of others expectations on me as well as my own which don't fall short of perfection.  I feel I am back at square one as if I never learned what I God showed me and taught me in the last 6 months.  How can I possibly go from being positive and content to struggling so badly?
Since the midline was taken out I feel I have been running non stop, especially these last 3 weeks as I have been trying to get stuff ready for school.  But I have also found in the last 3 weeks that I want to just climb in my hole and be by myself.  Not at all how I originally wanted to spend the last summer days with the girls.  There has been a return of most symptoms and full force, and new symptoms have shown up, so I am back to day after day of pain and discomfort.  My calf muscle was cramping so bad my mind searched itself for what I could possibly take to get some relief.  All this combined with being fully responsible for the house again and I have felt extremely overwhelmed, incompetent, and incapable.  So, when people say I look good on the outside I get confused because all I can see is the mess on the inside (there is a sermon in that somewhere :-) , as we say in our house).
I had blood work done today to check levels and even now that it is done I feel anxious about them and I don't know why. There are several other things going on that contribute to all this and I just don't feel I can get my head above water.
I see a counselor about once a month and I was anxious to see her this week to process all this and figure out what is going on so I can snap out of it.  I completely lost it with her and then I heard her say, "I think you are just plain exhausted. You need a break. You need to get away."  I felt so stupid (yes, the "s" word we aren't supposed to say in our house) because I processed those words and went, "duh!!!" that is totally it.  I have drilled myself into the ground, trying to do everything, not going to bed when I should, or eat the right things, and I just keep saying, "just one more thing", or "I'll just do this one more thing".  I'm already feeling bad and I don't see a big enough improvement to positively reinforce getting rest so I figure I'm just going to feel bad anyway, why not keep going.  My body hasn't had a chance to fight, especially when its down to begin with.  The mind just never shuts off and I barely allow the body to be still.  Oh, the peace of the days where the mind was quiet and the body was still.  It had to be.  The days I had help and the midline forced me to prioritize and basically it meant I hung with my girls because they were priority.  The last couple days (Sunday and Monday) were pretty bad with sore throat and  drainage and feeling sick on top of sick.  It was scary because I'm thinking, "what can they give me to help me get over this because I'm already on 3 antibiotics.  How many antibiotics can a person be on?"  I never dreamed a person could be on 2 at the same time much less 3, and all my other meds.  Today we started school and it was a challenge but God gave me exactly what I needed to function.  It wasn't the best first day but we made it through and tomorrow is another day. I will think about what we didn't do well and try again tomorrow.  I just hate that it takes me ten times longer to do things, and I can't multi task, and I'm trying to teach my 6 and 4 year old when I feel I have the brain of a 2 or 3 year old.  I is excruciatingly frustrating to not be able to do what you used to be able to do quite well.  My biggest fear right now is that all tests will show remission to the doctor's standards and I still feel like I do today with no answers.  What if God's will is for me to stay like this?  Having had a couple months where I didn't hurt all the time, that thought is difficult to swallow.  It makes me question where my hope is placed.  The world says that at the age of 37 I shouldn't be like this...that I should be more functional and yet I know I wouldn't be able to hold down a job right now if I wanted to due to physical and mental inabilities. When the midline was in I didn't look normal and normal wasn't expected out of me.  Now, the midline is out and I look normal and everyone expects me to function at 100% and I can't.  Its difficult to convince my head of this as well. I just want to function as a wife and mom, better then I have in the last 2 years.  But what if God has a different plan?

Grief and Joy Simultaneously

Its been a while since I have blogged. In some way the reasons are good and in others they are not.  Basically it comes down to this: Without an IV in my arm to slow me down, I am up and at 'em doing, usually too much to the detrement of the body.  There are things to be done, always. and unless I just feel  bed ridden horrible I am trying to get things done.  Lately, the last 3 weeks have been spent mainly getting ready for the girls to start school.  We had originally planned to start August 23rd but that didn't happen.  Chris felt we should post pone it till the following week.  The weekend before August 23rd I was in bed most the weekend, and ended the weekend having 42+ youth at the house for waffles and bacon and swimming. I had 3 wonderful ladies helping me with 4 griddles, and 4 waffle irons and we blew the fuse at least 5 times as we cooked 9 pounds of bacon and 1 3/4 boxes of bisquick for waffles.  It was awesome!  After the bacon fog cleared I was happy and very accepting of us not starting school the following day.  As last week progressed I also realized I was as ready to start school as I wanted to be.  We were missing a couple important items.  I enjoyed another summer week without the rigid schedule of school.  

This last weekend was a good weekend.  Saturday we got a lot accomplished with the house...things that have needed to be done since we moved in.  To those on the outside it may have looked fine and settled but as a woman there were definitely some unsettled things.  I don't know how to be still, which scares me. I learned a lot in my 3-4 months of having to be still.  I don't want to forget what I learned and return so quickly to running around with my head cut off missing the important things of life. Granted, "running around with my head cut off" looks a little different from what it was last Fall but the concept is the same.

Today I am feeling extremely run down but at no surprise with how I have been "busy" with stuff.  It takes longer to get things done due to my energy but I do enjoy the feeling of accomplishment and productiveness. I came to the realization today that as long as I am moving my mind is off of how I really feel.  The minute I sit down I am all too aware of how my body hurts and is lacking the energy I am requiring of it.  I have been discouraged, frustrated and worry and fear have crept in this last month.  Symptoms we had before seeing Dr. Kolodjski last November have returned.  This means that there is not a day I am not in some type of pain.  From about February to the end of July I was practically pain free except when going through a herx.  When the IV was removed these symptoms returned.  The headaches, stomach distrubances, shoulder and hip and hand pain and the cramping of muslces.  Most of the pain and cramping is on the right side of the body but the left chimes in as well.  It is weird to be standing at the mirror blowing drying my hair and my right big toe cramps...just the big toe....the whole toe. It feels different from a toe cramp, though that won't make sense to most.  When I am sitting or laying down, everything just gets stiff and the initial movements are quite uncomfortable.

The resurgance of these symptoms has been on top of the daily symptoms that have persisted such as memory, foggy brain, weakness, slurred and/or stuttered speech, shedding of hair, and no energy.

Its August, approximately 8 months into treatment and I had hopes of feeling better then I do.  Doubt and fear want to creep in and I try to keep them at bay by reminding myself that my God is still in control, still has my back, and whether I "get better" or not it doesn't change that this life is His to do with as He sees fit for His purpose.  I try not to focus on what science and research says should be going on or not going on, but take one day at a time focusing on God.  I believe He has my back and is with me no matter what hurts or doesn't work.  I have been apprehensive about starting school and the whole word "Fall" and have been trying to figure out why.  Is it because of last Fall and aweful turn for the worse I took and how horribly challenging it was to keep house and school the girls and just function.   If you don't know me well you would ask why I am home schooling again.  But Chris and I prayed about it and oddly both felt at the same time the definite affirmation that we are to home school.  So, I try to meet this apprehension with the reminder that if God wants us home school then He will give me what I need to do it.

I have experienced the frustration of trying to do things.  I don't do well with a tight schedule (like Sunday mornings or having to get somewhere by a certain time).  I do better with days that have no structure.  This is so not like the true me. I am a type A personality that used to thrive off of routine and structure and schedules....at least I think I did.  Last school year we had some pretty rough days with me being pretty frustrated with Becka.  At the time we didn't know what it was or what was causing it.  Now, we do but just knowing the cause doesn't make it go away.  

So, there has to be a delicate balance.  I have to ration my energy or I get frustrated.  Like yesterday. I went to the grocery store for the first time by myself with just the girls.  By the time I got home, I was fried for the day and down for the afternoon. When the energy is tapped out my fuse is short and I am grumpy and short with my family.  Sunday mornings is another example.  To get up and get the girls and I ready and to go to church and all that goes on at church, by the time I am home I am fried for the day.  Too many days of that in a row appear to do me in like today where its not even noon and I am shot.

On the outside I look "great" and "healthy" (other people's comments) but I feel crummy.  My smile is often misunderstood as feeling and doing well, when in reality I feel crummy but am at peace with it...most of the time.

I still find people's reactions to me interesting.  When people ask "how are you doing" most don't really want the full story.  I do not offer information without being prompted but am more than happy to share what I know about this disease and what is up with out treatment if asked.  Its just that most don't really care enough to really want to know.  If they have really cared enough to invest in us and cared enough to learn and get to know us then they still may not understand what is going on but they accept it.  Its those that have not invested in getting to know us that have sat back in judgement and have criticized.  It is interesting and frustrating all at once.

It doesn't help that we are in the phase of treatment where not much is happening (no IV's to cause "drama" I guess) but we are in the long haul of being on 3 antibiotics and waiting for numbers to be favorable.  Our last visit with the doctor August 16th affirmed that we are supposed to be on 3 antibiotics (there was controversy with some on this...glad I listened to my intuition) and that, yes, the CD-57 number of "15" is pretty pathetic. But we also got some clarification on misunderstood information.  On the Lyme test there are two sections and each section as "titres" or bands.  Each band represents an antibody to a specific part of the bacteria.  The top section is called "IGG" and the bottom section is called "IGM".  The IGG shows past infections. The bottom section shows current infection.  I think we started with one positive band at the top (IGG) and one positive band at the bottom (IGM).  We were first under the impression that we were working towards two tests with no bands positive on the top or bottom. It was further clarified that the top band will always be positive, similar to a mono test. If you have ever had mono you will always show positive for mono (on the IGG part of the test).  We currently do not have any positive bands on the bottom, which is a good thing.  However, the CD-57 needs to be 180 with no positive bands on the bottom to be considered in remission and for treatment to stop.  Till these results are reached, I will be on antibiotics.  It is possible that if there aren't changes that the only thing that will change will be the antibiotics used.  The only reason we are not still on the IV is because insurance will not approve it and we can't afford to pay for it out of pocket.  We will have more labs done the week of Sept. 8th and we will see the doctor again two weeks after that (I think).  This is the long haul of the treatment where things don't move very quickly or dramatically. However, based on what we have researched and what the doctor has said, the CD-57 will not creep up to 180 but should leap up.  I think the doctor is hoping and expecting that our next test will show a major increase to at least the 70's or 80's.

There is a part of me that gets anxious for the nest set of labs but then I remember that my trust is not in the science of this disease and what research says it should do. My trust is in my Lord and knowing that it will be what it will be according to His purposes.  Some days are easier then others in doing this.  One of my biggest fears is that the test will indicate remission but all the symptoms will still be going full force.  If I never regain "my life" back I have to accept that and be content with that. It would easier to accept if others accepted it but there I just reveal how concerned I am about what others think, thus taking my focus off of above.  He has a reason and a purpose and a plan for everything, big or small.  He will always be in control.  I must rest in this each and every day.  Nehemiah 8:10..."Do not be grieved, for the joy of the Lord is your strength".