Is There Anything Up There?

We had our appointment Monday morning. We left with mixed feelings.  Sometimes I feel we are told what they think we want to hear and then when we leave we are feeling a little ________. Not sure what the feeling is.  This was definitely one of those times.  I will say this: She does sit and take her time with us for the most part.  She is fairly patient with our numerous questions and though she appears ready to move on to the next patient, I do feel she is fair with her time. I just don't feel we get the depth and with the inconsistencies in communication I often lack trust in my care.  However, this doctor has more then 20 years of experience in treating Lyme and she is all I currently have.  I would love to go back to the natural health doctor but finances just don't allow for that at this time.
We went to this appointment feeling that the last 5 weeks there have been more "rough" days then "okay days".  Rough days are often characterized by being in bed for the majority, if not all, of the day.  It is also characterized by our typical daily routine interrupted because I am not capable.  Though I don't have "terrific" days as far as how I feel, a better day is one where I can get through the day without bed and routine interrupted.  "Okay" days are still marked with sluggishness and in the last couple months, some pain.
Chris and I were sitting in the exam room waiting for the doc when I shared with Chris that I thought I felt better when I was on the IV.  I felt this was a ludicrous idea but then Chris pointed out that I was getting a full bag of fluids each day.  This had never crossed my mind, not that much crosses it anymore anyway.  I was also better at drinking more water because I needed to to get other stuff down :-)  The doc came in and we approached her about our first two concerns.  I don't feel I am eliminating like I should and that we have had more bad then good days.  Chris has tried to get me an over the counter "aid" but my experience in the past with those has sent me way to the other extreme and I am really wanting my body to handle it naturally....unfortunately, I putting a lot of unnatural chemicals into it so this may be an inappropriate expectation at this point.  She recommended taking Cenocot to help things along. As bad as I feel I am willing to try something now.  I shared with her my observation and Chris' point about the water and she agreed. She suggested drinking a bottle of gatorade a day (I don't like gatorade).  I mentioned that I usually just drink water and she said it wasn't enough to sustain me that the sodium in gatorade opens up the veins/vessels and aids in better "something".
We moved on to another on of our concerns... the headaches and the sharp pain over the right ear.  The last time we saw her she gave me a ten day supply of an allergy medicine.  It didn't do anything that I am aware of.  She had looked at my ears and said they weren't infected but "sunken in" or something like that.  This last appointment, she didn't look at my ears, though they have been bothering me more then had before the last visit.  She mentioned possibly doing an MRI. Then we moved on to my observation that my right foot is turned in. When I sit down the right foot turns to the left and lays on its outer side.  I asked her if it was odd that most of my symptoms are active prominently on the right side. She agreed that it is odd and not typical. I shared that with the foot turned in no wonder the right side of the body isn't happy.  Feeling like I was complaining and feeling self conscious about the number of symptoms we were talking about I told her that I didn't know what fell under the umbrella of Lyme anymore and therefore, what to be or not be concerned about.  She did say that Lyme could be causing the foot turned in though it would be rare.  At that point I asked if it wouldn't be a bad idea, with deductibles met, that we go ahead and do the MRI.  She said we could go downstairs and do it that morning and have results the next day.
She ordered more blood work and depending on how that comes out, will determine if she does any more tweaking and adjusting, though she hasn't in the past.  She still appears not satisfied with the CD-57 level and it "really needs to be 100-120s" this next time.  We'll see.  I am more interested in the routine blood work showing kidney and liver stuff due to the lack of elimination.  I am looking forward to trying the Cenocot and added fluids to see how it effects how I feel and am hoping it helps me have better days.  Often times its the smallest and simplest things that can make the biggest impact.

Monday afternoon some time during nap I received a message from "Denise" at the ER.  Its pretty bad when you have started building relationships with the staff in an ER.  Makes me think of Tim the Toolman on Home Improvement. I really wasn't expecting anything outside of "normal" and with results that fast I figured, "yup, another normal".  Most people wouldn't understand this but if you are familiar with the last 10-15 years of my life you know thats all we heard and yet the symptoms continued to get worse. So, its difficult to be having symptoms and no answers and you cringe to hear "normal" because you feel anything but normal, as if normal exists anymore for anyone.
I called the ER back this morning and was surprised to hear that the MRI showed Acute Chronic Sinusitis or Chronic Acute Sinusitis...don't remember the order of the words...just the words and that alone is a feat.  She explained that this basically means that there is fluid in the sinus cavities.  We are being referred to a neurologist (I thought this was weird...why not an ENT specialist) due to the concern that they can't see if there has been any type of stroke due to the sinus cavities being full.  Again, for most people they might "freak out" over this.  For me, there is peace and a direction to go in and possibly and answer to the headaches, sharp pains above the right ear, and turned in foot.  Usually, if there is an answer, there is another answer that may bring you relief from these symptoms that make life a challenge right now.  I am glad we pushed for the MRI.  It was interesting because the nurse said, "well you are already on antibiotics for sinusitis" and I replied, "the 3 antibiotics that I am on and have been on since March are for Lyme, not sinusitis"....."oh..." was all I heard after that.  Makes me laugh and wonder.  If it is a sinus infection what will they treat it with? A fourth antibiotic? If they change one of the antibiotics I'm on they would have to change the "family" it comes from to make a difference and then you are altering the Lyme treatment.  Makes me ponder.
We know two neurologists. The most current is the one convinced I have a muscle disorder.  She was thorough and spend a lot of time with us and determined.  I have thought a lot about her several days before yesterday.  I would love to go back to her and share with her about the Lyme so that if she has future patients that fit my situation she might look to Lyme and they would be treated sooner.  However, she does not take our insurance.  The other neurologist was the one that helped me back before the girls were born when I was fighting migraines.  The last time I saw her, I had gone in to ask about MS, looking for an answer to my debilitating symptoms that continued to get worse, and MS fit most of my symptoms.  She wouldn't even listen and consider it or was open to discuss things further....literally it was a brick wall smacked into by a fat ego.  So, not incredibly anxious to back to her...though I would love for her to hear about Lyme, I don't think she would be open to it...it would be unproductive and ineffective.  We will be getting a referral from our Lyme doc and then praying over where God wants us to go.  The advantage to seeing the referral is that they will most likely be Lyme literate and therefore we won't hopefully have to go through the questions and explaining about Lyme.  I do want to jump on this quick as to hopefully find some relief from the head.  I had mentioned to Chris that one thought I had was that it could be sinus related since my headaches were worse after a nap (laying down) then if I was up most the day. This baffled me though because, though everyone is really suffering right now with the seasonal allergies (my poor husband included) I really didn't think I was.  I have some drainage down the back of my throat but my throat isn't sore, I rarely blow my nose, and when I do I rarely get anything.  Being on antibiotics for the amount of time I have been on them and the amount time I will be on them is going to pose some interesting questions and situations.
Oh, with all the challenges I have had with my mind I comically made the comment Monday before the MRI that we will officially know if anything is upstairs or not.  Just for the record, Chris sat by the technician the entire time and said that he saw a brain, so I am good :-)
Today was another challenging day with school and the girls and things not going right no matter how hard I tried.  It was another day where I just wanted to quit and I questioned everything. And yet I sit here now in peace and I think it has a lot to do with the preparation of a song for the Sunday Chris preaches.  You see, I haven't played piano seriously for over a year and a half and I can count on one finger the number of times I have touched the piano since we moved to this house in February.  What was once thought to be hands not working I discover was more a mind that wouldn't work with two hands that were deteriorating.  Two of my hearts cry songs are being done the Sunday Chris preaches.  He assigned one to me.  A while back I tried to dictate the song and my mind (and computer) wouldn't cooperate.  Chris purchased the sheet music to have, and his youth have begun singing it.  Not hearing of who would accompany me, I found myself  sitting down at the piano and trying to play it.  It is a simple song with not a whole lot to the piano accompaniment part but I still didn't expect I would be able to play it.  But something inside wouldn't give up after I went back the next day and hadn't forgotten what I had played the day before. It wasn't like starting over.  There was a peace and "knowing" and gentle nudge that said "I want you to play and sing this" which was quickly followed by, "are you crazy God? I have never played AND sung before together in front of people, much less at church and on a Sunday Chris is preaching! (as if He didn't know this and hadn't made this connection). I continued to go back and practice it and it has been a great time of worship for me each day.  My hands don't hurt any worse then they would from doing anything else and I am remembering, retaining what I have worked on.  Having still not heard who would accompany that Sunday, I continued to practice a little each day and have been amazed at what has developed.  Chris has made the decision that I will play and sing this song the Sunday he preaches.  Satan has already begun his attack and if I think too hard about doing this I begin to freak out a tad but then I sit down and play and sing and its as if God is saying, "see, you can do it because I'm doing it through you."  I know satan will continue to work his stuff right up to the first notes I play that morning but if this is God's doing then it will be what He wants it to be.  I truly feel His hands on mine and it has been truly amazing and incredible.  I do worry (satan creeping in) about a lot of things and one of them being what others will think (always been the hole in my wall and gate....for those who attend our church you know what I am talking about).  I have a difficult time as it is for people to understand just how much of a challenge it is to do everyday life.  What will they think if they see me playing and singing?  I'll never get them to understand.  But I have to remind myself that its not my job to "make" them understand or to worry about what will be.  Rest and Rely on the Hands that are in charge.  So much easier said then done for this Lymie, particularly after days like today, but not after playing and singing to my God.  Now if I could just figure out a way to....
Please continue to pray for direction, God's healing on God's time, and for Chris as he prepares to preach November 14th.  Please continue to pray for the girls as they are growing up with a sick momma who doesn't always think clearly and keep up with them (physically or mentally).  Please pray for the wisdom and discernment for all those who come in contact with us (both medically and friends and family).  Please pray that treatment is where God wants it to be and that I will continue to learn to rest and rely in His hands, the rough days and the okay days.