Post Birthday Grumps

I have noticed the last couple days I have been very unsettled.  Basically tired of feeling like a bump on a log, or useless and feeling like I have no control or effectiveness with my house or my children.  I think part of it is we don't have school any more and I could do school with the girls for the most part. I had "dreams" of playing this summer and then it hit me the other day, "hey silly, you still can't do anything"...gggrrrr.  Though it doesn't feel like it, there has to be some progress going on upstairs because I noticed last week that my mind wouldn't shut off.  Wow!  Haven't missed that but I'm not sure I want the crickets back either. I don't want this to be misunderstood, but I am going to sound weird when I say that I still feel extremely blessed and it is still well with me that I have Lyme.  There are still going to be "valleys" in the journey and I believe I may be upon one.  For everyone else, today was a "different" day with cookouts, swimming, hanging out with family and/or friends. But, for me, it was another typical day of no energy, still can't clean my own home or do things with my kiddos. Yesterday was such a reminder of that when we went over to a couple's house after church for burgers and swimming.  In some ways it was nice to get out of the house and feel somewhat like a normal person.  I enjoyed being around other people and not staring at the same four walls of a house I don't have any control over.  I fooled myself into thinking, "no problem" but was quickly reminded that I am "sick" when I wasn't processing the conversation very well (I felt mentally challenged) and felt sunburned and I wasn't in the sun that much. By the time we got home (we were only there for a couple hours) I was completely beat and wiped out. All I did was sit and eat a hamburger (no bun) and sit in the shade and watch my kiddos have fun in the pool.  But all the while reminded of how little I'm feel I am able to be "mom".  It continued today.  The best way I can put it is I am a lump of flesh just taking up space.

I/we knew this fight would take a good solid year or more but I am so ready to get back to doing things.  As I pondered (I have a lot of time to ponder) today I realized that before this last weekend I had something to look forward to. I am on such a ridiculously restricted diet that I was looking forward to my birthday because I had made up my mind (shortly after my daughter was mortified that I wouldn't be able to eat cake on my birthday) that I was going to "cheat" on my birthday.  Fortunately, or unfortunately, depending on how you look at it, a day of cheat turned into a slight week of cheat.  But see, the whole food things has be completely discombobbled.  Due to Lyme I am not supposed to eat any sugar, starches or carbs. Any type of sugar feeds the bacteria and we don't want to do that...they have been partying for over 10 years...party is over! On top of that is my natural health doctor saying I can't have certain foods due to food sensitivities.  Eating food that your body is sensitive to further suppresses my already severely suppressed immune system not allowing it to fight the Lyme.  At first this was extremely overwhelming and it took Chris and I a while to "get it" much less anyone else. But, starting January 19th I committed to fighting this disease whole heartedly because I wanted my life back.  The first 3 weeks were so challenging but then it eased up.  Basically, at home we do both...the Lyme diet and the food sensitivities. If we are out for some reason we stick to the Lyme diet basically because one of the food sensitivities is black pepper. Hello! Everything in the restaurant world has black pepper.  I do find when we do eat out or I eat something with black pepper I do get a headache.  One of the other sensitivities is soy. Hello! Almost everything has soy.

This last Saturday night my mother-in-law and Jimbo took me out to Carraba's for my birthday. I had ravioli and salad and cheese sticks and the best tiramisu and brownie explosion I have ever had!  Complete cheat and I don't regret it at all.  And I knew, after being on a strict diet for over 4 months and then cheating, that it would be difficult to go back to the restrictive diet. But looking forward to the cheat helped me pull through the last 4 months. Now, I am lacking something to push for and I feel I have such a food complex that I will need to see a food therapist to ever think of food again normally.

On one hand I have the natural health doctor telling me to have this shake and eat not sugars, carbs and starches. On the other hand I have my other doctor saying I need 30 grams of carbs a day or I will be facing ketosis. I look at the shake and it is exactly 30 grams....bummer (I was looking forward to adding something back in) but cool because my carbs were covered. Then I'm taken off the shake because the natural health doctor feels its detoxifying me too much and that I have developed a food sensitivity to an ingredient in it.  Huh? Okay, no problem...I get to add in a few carbs...piece of toast or one tortilla.  Nope! Those are bad carbs. You need good carbs.  Is there such a thing? Then I'm told I can have an apple. I am so confused!

I've realized for some time now that I was having trouble with food. No appetite and I have come to a point that if its not prepared for me I won't eat.  I can get the girls fed with no problem but when it comes to me its too much mental work to figure what to eat and with nothing sounding remotely decent its just easier to not eat. With the birthday gone (and so is the tiramisu) I'm really in a pickle because now there isn't a definitive date to push for.  If it were up to me, I'd quit eating altogether.  I don't enjoy it. I don't look forward to it.  Its just something I have to do because I have medications that deem it.  Yes, I have lost weight in the last 4 months but I am scared to death of what will happen when I am given the clearance  to eat again.  I'm afraid I will either eat non stop and blow up like the Good Year Blimp or I will have a deep rooted food complex that I won't eat again (I will never pass up Tiramisu or the brownie explosion...that part I know to be sure).

I know I am where I am for a reason. I'm at peace with that....or am I if I'm feeling "ansy" and using quotation marks a million times in one blog?  It is up in the air right now how much longer the midline will be in.  The current medication order has 2 1/2 more weeks left. The midline is showing wear (keep in mind its made to last 6 weeks and we are coming up on 10). The doctor was not real happy with the CD-57 levels last time we saw her. So, I'm not sure what will happen.  I do know that the right arm has gotten so week from not being used that it is very difficult to write with it.  I thought it was weak and losing strength before the midline but now its even worse.  I am saddened that my piano playing will near the same and yet it already was being affected.  My kids are on summer vacation but they can't get in the pool when its just the 3 of us home and there is very little I can do with them (but I can still snuggle and I am still the Queen of Tickle thanks to two feet and one arm).  It bothers me that we've been at our current church a year now and people don't know the us before Lyme...but then again, we don't either.  Due to my lack of ability to process while hearing something or reading something that all they know is this blank-faced woman that has nothing going on upstairs.  They don't know us any differently. It has made building relationships very difficult.

When people ask how I am doing it is a challenge to know how to reply. On one hand I want to be real, not fake, and say, "I'm hanging in there" but I'm tired of saying it.  I was challenged one day walking into church. I felt the holy spirit convict me as I'm walking into church that I needed to be a light that points to God. And so I have tried to change my answer to, "I'm very blessed" but then people think you are doing great and that isn't the truth either.  The truth is I am extremely blessed but that doesn't mean I won't have valleys, and struggles, and days when I am so tired of this disease.  Its because I am so blessed that I want to be done with this disease and be back to doing things.  I am a doer and I am ready to be on the giving end and not the receiving end.  Because of God in my life, because of a relationship with Him, I can be in these valleys and still have hope and desire to be better.  Without it, life is vain and empty and useless.  So, please don't mistaken the times of struggle as bad or me lacking faith and hope, but realize that I am human and its natural to have valleys as long as I am looking up at the Son for my direction.

Another Crazy Day Filled with God's Blessings!

Days like today really leave me wiped out physically but spiritually  I'm laughing.  Chris and I can sum up today like this: "We are only on for the ride. Sometimes its smooth. Sometimes its scary and bumpy. And sometimes its just plain crazy."  Today was crazy like last Monday was crazy and it just leaves us laughing as we hold on for the ride.

Not knowing how traffic was going to be, we were out the door at 6:40 this morning (bless the babysitter's heart) to make our first appointment.  It was with Dr. Slade and Baker who did my lasic eye surgery almost 11 years ago (Dad, the office is almost exactly the same...just flip flopped).  It was weird being back in there. I haven't stepped foot in an eye doctors office for an exam since my lasic surgery (saw an eye doctor last spring when I had an eye injury). I went through an hour of exams, drops, tests, etc.  The right eye came out 20/60 and the left eye came out 20/20.  We were offered given a prescription for glasses and offered lasic for half price since I was an existing patient.  We did ask Dr. Baker about Lyme or the medications being the reason for the change in vision and he said that the shape of the eye has changed and if it were the Lyme or medication it would be in both eyes and not effect the shape of the eye.  Basically, I'm just getting old.

The first blessing of the day was being told I have healthy eyes. The second blessing came when we went to check out and were told our visit was 100% covered. Wow!

We left there with just enough time to get to our 10:00 appointment....my yearly female obligation.  I found it funny that we do our best to get there in time only to sit for an hour and a half (45 minutes in the waiting room and 45 minutes in the exam room) to see the doctor.  

I needed Chris with me today for many reasons. One because I don't process information very well any more and I don't remember short term information.  So I need Chris there as a back up brain to comprehend and remember what I has been explained to me, especially by doctors. Second, I was a bit nervous about how the doctors were going to respond today regarding the Lyme, particularly my OB/GYN doctor. We have had all types of responses, most are not pleasant but complicated...hhhhmmm just like the disease itself.  The eye doctor didn't bat an eye...no pun intended.   I was more nervous about my gynocologist.  I have been seeing her for over 18 years. She has very strong opinions (particularly about Katrina) and doesn't like to be inconvenienced at all. However, I trust her competency and if I ever need a referral for anything I call her. Every referral I have ever received from her has been top notch.  Keep in mind she was already and hour and a half behind schedule and when she came in she sat down and looked and Chris and then looked at me. Then she asked, "why is he here?" I found the question very odd.  Chris quickly reminded her of his track record for both pregnancies (really 3) and she remembered but was still confused. She then explained that the husband doesn't usually show up unless there was a problem.  Very interesting.  She then looked at the list of meds I am on and asked, "Are these meds I have you on?" And that began the conversation of Lyme.  I was amazed at how she responded.  She is the first medical professional to respond passionately, with some understanding of the disease, having been tested for Lyme herself after returning from a vacation in Maine.  I could tell she wasn't completely knowledgable but enough.  More then three times she said, "If you need anything at all, please let me know."  I was floored. Another blessing.  Its difficult to explain but unlike other diseases and conditions, Lyme is not well known or understood and we usually end up doing a lot of explaining and sometimes defending of the disease. It was nice not to have to do this today...at all!  

We were in the car on the way to the DMV to get the license renewed and I was on my phone trying to find eye places to get fitted for glasses on our way home after the DMV. Again, I wanted Chris there for support. We had a "front of the line" pass from the last time we were there when I failed the vision test, but I don't exactly have the gumption to walk in front of a 2 hour line and say, "I have a pass"...I'm chicken.  We were under the assumption that the paper we had to have filled out by Dr. Baker said that corrective lenses were ordered and that we wouldn't have to take the vision test again at the DMV but just my license.  First of all, we didn't get the front of the line but we got to the end of the shortest line (blessing). Then when it was my turn the lady asked me to put my forehead on the vision screener.  You're kidding me, right?  They were tested and examined for over an hour this morning, and the paper is signed. Nope, she wanted me to do the vision test again. I explained that I didn't have my corrected lenses yet and she explained back that I needed them to do the test.  I couldn't believe that we were about to have to leave and come back a third time.  Somehow, out of no where I heard myself say, "Could I at least give it a try?" and she said I could and asked me to read line 5.  Great! That was the line I had to read last time and I failed.  I looked in. First two columns were crystal clear (especially since my eyes were blood shot and barely back to normal from being dialated from that morning) but the third column was blurry. I looked at the first letter and knew I couldn't tell what it was.  Something inside of me said, "just go for it" so I read the line the best I could straight through.  I looked up and she said, "nice"....nice? What did that mean? Nice effort you failed? What? She looked at me and said, "you only missed one letter. That's good enough for us. You passed." I wast so happy we wouldn't have to come back a third time.  I anxiously watched as she finished the paperwork and we payed our money. I didn't want her to find any other reason to deny the renewal. We were walking out the door and Chris said, "You caught that right?" "What do you mean?" I asked. He said,"Look at your piece of paper....it says no restrictions." Sure enough! My license was renewed without restrictions. Another blessing.  It blew me away. 

Have you ever been going through a moment in time when it is just so obvious something is orchestrating it to go a certain way and its not going the way it "should" go? That was the DMV today. So, I'm a little confused...do I need glasses or not? The obvious answer is yes but at least I'm not under a time constraint to get them....another blessing.  

We grabbed some lunch and headed home. I was getting home a little later than I had originally planned and whole lot more blown away by how the day had gone.  We get home and I'm talking to the babysitter and asking how things went. I asked how the girls were and she replied, "They were fantastic. I didn't have any problems with them today." Did I walk into the right house? Keep in mind my girls are usually pretty good, especially for others, but this was a long day for the babysitter and the girls have acted up for her before.  To hear that they were fantastic was music to my ears.  Another blessing!!!  Of course, the babysitter was awesome today remembering to put sunscreen on them before getting in the pool (she brought her own since she didn't know if an where ours was, swimming with them, and sending me a picture of them having fun and being happy.  Pretty cool.

Chris hooked my IV and I got comfortable on the bed to check email and it all hit. I crashed. Days like this wipe me out. I got a little nap in but have been edgy and cranky and useless the rest of the day/night.  But at least I am a very blessed lump on a log.  Its days like today that affirm us that we are just on for the ride. Sometimes its crazy!  I don't remember signing up for this ride (though technically I did when I accepted Christ) and I didn't pay for this ride (Christ did) but there blessings all through it.  Hold on tight because we are on for the ride of our lives! I'm so glad I know where it ends up!

All Mixed Up

Today has been a rough day to say the least. I have been in bed all day fighting off a headache, nausea, and a midsection that is not happy.  I'm amazed at how much sleep I got today.  The body is not happy in the vertical position.
Today comes at the end of another crazy week. It started Monday. We had a doctor's appointment that went well.  She said she would order another 2 weeks of the IV med on top of the 4 week order we are halfway through now.  All in all it will be 12 weeks of IV meds when all said and done.  We ironed out the lab confusion and received copies of the lab work done since April 22 and we were informed that it had been dictated to the wrong number.  She wasn't thrilled with the CD-57 results. We started at 26 last November and the lab results came back indicating 38.  Her goal is 180 before she considers me in remission.  If I understood things correctly, she feels the new gallbladder medication should help with the sludge in the gallbladder till we are off the IV.
From the doctor's office we went to the bank where we sat with the same bank representative we have had to work with several times to iron out "miscommunications" with her and our account.  When we were leaving she said, "if you have any question please don't hesitate to call me. Today is my last day. I will be on vacation for four days". I found this to be quite odd because she has shared with us her situation of a husband that has left her and her son with a mortgage to pay. Monday during our visit she stated she was 2 month behind on her mortgage payment. So, I found it odd that she worded it the way she did and that she was going on vacation. I quickly dismissed it.
We left the bank to go to the DMV to renew my drivers license which expires Sunday....joy, joy, yippee, skippee!  We stood in line for an hour and a half only for me to fail my vision test and be denied the renewal.  I don't think it helped that I answered yes to a couple of the health questions (just being honest but understand why some aren't) nor did the IV on my right arm help either.  The first two columns were clear as day but the third one kept moving. I grew up with glasses (started wearing them at age 4). Growing up feeling blind I learned "to make things out". Somewhere between the Fall of 1999 and the Fall of 2000 I had Lasix surgery to correct my vision.  I have enjoyed almost 20/20 vision since with my left eye seeing 20/15 and my right eye seeing 20/25.  But last spring I noticed my vision was changing slightly. It also didn't help that, while we were preparing the house to be put on the market to move to Simonton, a twig fell in my eye as I was trimming bushes.  When I went in to have it checked I had 3 scratches across the lens and when I did a vision test there they were surprised. I didn't think it was that bad.  When I started on the Lyme meds I again noticed a change but I knew that 2 of the meds could cause vision disturbances.  No telling if its the meds, old age, or the Lyme. But next Friday I will go in to see the doc who did my lasix surgery and get them checked out so I can hopefully get my license renewed.  Not looking forward to having to wear glasses again but if I do, I'm hoping that the bad vision will go into remission with the Lyme.
I was so focused on the ladies "failed" all afternoon. We picked the girls up, who had played hard all morning, and went home. I was exhausted and sore. The girls crashed, and as a good modern day couple, Chris and I sat on our bed with me hooked up to my IV pole and each of us with our laptops surfing away independently.  I was going through emails when I spotted one from a dance place I'm putting Maddie in this summer. It stated our card didn't go through.  I thought that was odd and immediately opened up our checking account and what I saw sent me into panic and the "failed" I received earlier no longer seemed as urgent.  There on our checking account was a charge for skype to London for $14.50 and then 4 more charges for airline tickets out of the country.  I immediately thought of our conversation with the bank representative that morning.  Panic running through my body as I sat there watching our bank account being emptied by some unknown source. Chris immediately got on the phone and it was determined that it was my check card and not his.  It was immediately closed. We were told there wasn't anything else we could do since the charges were still pending.  I hung up and transferred what was left into savings and then I remembered that we had overdraft protection, both for the credit side of the card, and for the debit side of the card.  We had just said, "yes" to the debit overdraft protection that morning with the bank representative. We gathered up the girls and drove down to the hearest branch and shut down, unlinked, and did all we could do to prevent more damage being done.  I felt so violated.  Its scary not knowing who has what of yours and what are they doing with it.  Driving home from the bank Chris and I had to laugh.  With this kind of day I just have to laugh because I know who is in control and I know that nothing happens without some reason on His agenda.
Thats how we started the week.  With each day since I have felt worse with the headaches, nausea and midsection hurting.  Today I just didn't have the strength to stay vertical.  Could be a herxheimer or just good ol' Lyme but it left me with mixed feelings.  I have felt like a blob of uselessness all day and yet I know God has a reason for me being in this state.  When I am down it puts a lot on Chris and I hate that and yet there isn't anything I can do about it.  The seniors in our church were having a picnic today and Chris picked up the girls this morning and they went and played outdoors.  This evening when I finally crawled out of bed, Becka very proudly showed me the caterpillars she caught.

They were so colorful and beautiful.  We could have finished school today and I was bummed we didn't and yet excited that she got to play outdoors today and find bugs.  That girl is crazy about anything she thinks is breathing and alive (her first love was rocks).  They were playing outside when I got up and were filthy from head to toe. I wouldn't have it any other way. I would so rather they be outside soaking up the sun and bugs then stuck inside.
A thought occurred to me watching them play outside.  I'm not sure what is worse...not having the strength to do anything at all or still feeling cruddy but having an ounce of strength that teases me that I can do anything, only to try and be disappointed and quickly exhausted....difficult to explain.
I'm sitting here feeling pretty beat up, not wondering what tomorrow will be like. I am hoping I feel better and not worse because Maddie's dance recital is tomorrow night and short of a ruptured gallbladder (my new saying) I plan on being there. I'm hooked up to my IV pole sorting through email when I ran across this in an email from a friend....

http://www.wimp.com/babymoose

and it made me smile.  I had to share it.  The blessings still out weigh the pain.  Just having a life is a blessing.  Still being able to enjoy the simplest things is a blessing.  And so, my all mixed up feelings day ended with a smile....problem solved. :)

End of Week Report

Yesterday I went in to have my dressing changed on the midline since the ER visit prevented it from happening Tuesday. Today marks 7 weeks it has been in and we have been doing Rocephin via IV. One of  the nurses there, considering what happened Tuesday, asked how much longer we would have the IV. This puzzled me because I don't know what God's plan is :)
She looked in the file and said the first order was for 6 weeks (okay, I was aware of that...) and the second order was for 4 weeks (news to me). She said that places us around June 3. She explained that the concern is the midline is really made to last only 6 weeks. In changing the dressing I noticed 4 little black dots on the catheter. I inquired about them as I had only noticed one before. They are markers.  The catheter has come out some and at some point will need to be taken out completely.  Based on what they were saying, I will feel lucky if this midline is in two more weeks. The last time we met with Dr. Salvato her plan was to put another one in when this one quit working.  We will see what her plan is on Monday.
After having so much difficulty communicating with her office, we were afraid she was "flaking" out like the doctor in Lousiana. I was encouraged when we got the second order for IV meds (though it took an arm and a leg) and I was even more encouraged when she decided to keep going on the Rocephin in light of Tuesday.  I feel she is in this to fight with us. Please continue to pray for her and her staff.
Meanwhile, I wrote Dr. Kolodjski yesterday about the happenings this week.  I found it interesting that Tuesday happened after being taken off the morning shakes which are to detoxify the liver/kidney.  Since I'm not doing the shakes, I have also been challenged and frustrated by trying to find 30 grams of carbs a day that are appropriate. On one hand I'm not supposed to have carbs but on the other hand I need 30 grams of carbs to keep the body from eating itself (using muscle instead of fat for energy).  I have enjoyed this week a piece of toast with breakfast or a tortilla as a breakfast taco or beef taco. But it has been frustrating mentally.  Dr. Kolodjski disagrees with the CT and ultrasound findings from Tuesday and believes what I have instead is a hiatal hernia. So, this further frustrates and complicates things.  He is recommending a liver/gallbladder flush on one hand but also wants me to come in to be checked for a hiatal hernia.  This is easier said then done.  Chris looked up hiatal hernia and feels it would have been caught on at least one, if not both, scans Tuesday night. We have decided for the time being that we are going to meet with Dr. Salvato Monday and then make whatever decisions necessary from there.  Dr. Kolodjski suggested 2 servings of fruit as my carbs instead of bread. So, today I had 1/4 of an apple and boy was it sweet.  The cravings lately have been pretty strong.  With a birthday coming up I am trying to decide to "cheat" on my birthday or not. Either small cheat (just bad carbs) or super cheat (carbs plus cake ) :) Rebecka is concerned that I won't be able to have birthday cake on my birthday. She's looking out for me :)
The last couple days I have felt reasonable. We did, finally yesterday, get all our refills approved and filled so I am back on all meds again, plus the three I picked up this week.  It is crazy. Yesterday and today I am pretty sore/hurting under the rib cage by the end of the day.  When it hurts I do worry a little about a ruptured gallbladder and am just trying to hold out till Monday.  I don't mind it rupturing anywhere other than the car with two beautiful girls in the back.  But, once again, I have a heavenly Father who has it all under control and knows everything and I believe He has me covered and my girls.
Tomorrow night Chris and I are going out with the other pastors and wives to have dinner and than go listen to a choir concert that our music pastor is singing in. I am looking forward to getting dressed up and going out with some adult fellowship.  Short of a ruptured gallbladder I am planning to enjoy the evening out with my hubby.
Please continue to keep us in your prayers as we continue to fight this. I am closing this and updating the "How You Can Help" blog. Have a great weekend!

Crazy Week!

Just an update on what has been going on this week so you are in the know and know what to pray for (speaking of which I need to update the prayer blog).
Tuesday afternoon I was on my way to drop Becka off at gymnastics and take Maddie with me to Quality Infusion to have my dressing changed on the midline. About 10 minutes from gymnastics I began to experience severe pain in the stomach (diaphragm area) that radiated under the rib cage on both sides. I usually experience some cramping that grabs and lets go, and grabs and lets go, after my IV treatments each afternoon but this pain was higher and was consistent. By the time we arrived at gymnastics it was pretty bad. I dropped Becka off hoping she wouldn't sense I was struggling and tried to quickly get to Quality Infusion where I knew if anything happened I would be near medically trained people.
I went through periods of sweating and mid way there I felt I should pull over because I felt I was going to pass out.  I continued on and got to Quality Infusion. I was extremely shaky and feeling like it was all I could do to hold "things" together. I just kept praying God would get me there and inside safely.  He did.
As soon as I walked in their door they asked, as they usually do, "how are doing today?) and I lost it. The pain was so bad. They immediately walked me to the ER right there in the building. At that time my blood pressure was 142/?.  My blood pressure is hardly ever over 100/70.  They began asking questions and immediately brought the doctor in. I was transported by ambulance to another one of their facilities where they did an ultrasound of the entire abdomen and a CT of the entire abdomen as well as blood work and a chest x-ray.  It was determined that the IV med I am taking has caused the gallbladder to not function as it should resulting in "sludge".  This didn't surprise me as I have read several Lyme testamonies where this has happened and has resulted in the gallbladder being removed.  We were told that had we been in an ER that was in a hospital they would have admitted us and done surgery to take it out.
It was explained that there is a risk of the gallbladder being further agitated and rupturing.  Our options are to stop the IV med, take meds to help with the sludge or do an ultra sound every two weeks to check on if things are working. We contacted the Dr. Salvato's office yesterday morning and were given the go ahead to continue the IV med and were prescribed a med that will help with the gallbladder/sludge. We were also prescribed 2 meds at the ER Tuesday night.
Yesterday and today I am hurting but not near as bad as Tuesday afternoon. We are supposed to call and get into see a GI specialist that will help us "control" this. We are wanting to get a referral from Dr. Salvato knowing this isn't the first time this has happened in treating Lyme and knowing we will most likely end up with a specialist that is familiar with Lyme. We have an appointment Monday with Dr. Salvato where we are hoping to iron out several things and get answers as to where treatment will go from here in light of what is going on with the gallbladder.
Things have been frustrating and crazy but I am still at peace that my God has it all under control. Everything, no matter big or small, is for a reason and for His purpose. May His will be done.

Mother's Day

I am home today not feeling well physically but feeling over whelmed spiritually.  If I stay home on a Sunday morning I try to spend my own quiet time with God or I sleep.  Today, being Mother's Day, I really wanted to go to church and be with my girls in church but the body didn't allow that today.  So, I went back to bed and picked up a book called, "Let Go" by Fenelon. A sweet lady at church lent it to me. I am over whelmed with how well it speaks to me and what God has been doing with me in the last several weeks. It says to only read one chapter a day but I couldn't get enough and just kept reading. I then began to crave a song by Glad...some song from their Acapella album. It just kept playing over and over in my head. I grabbed my laptop and looked for it in my Itunes and couldn't find it. I then thought of Jim Brickman.  My dad gave me a cd he compiled and there is a song by Jim Brickman call, "Israel" that hits me deep for some reason. Piano music has such a deep effect on me. It can reach the inner most of my being.  I then thought of last Sunday in church how the piano music that morning was just so "powerful" to me.  I felt compelled to write our pianist a thank you for blessing me that morning. So, while listening to Jim Brickman's "Grace" album, I wrote her.  I am so moved this morning! I have been so blown away in the last several months by God's over whelming grace and love and blessings.  At home I can cry and blubber as I worship and not worry about mascara running, not having kleenex and worrying about the snot running down my face, and worrying then the reaction from other people as they see me cry.  Its often misunderstood as I am struggling but most of the times its because I am just moved and over whelmed by Him.  When the spirit moves, my eyes leak. Its a good thing. Sometimes though, my most intimate times with Him are at home, when no one else is here and I sit in quiet without any distractions...just me and God. He doesn't care what I'm wearing or what my face will look like after He and I are done communing.
I believe todays tears, as I listen to hymns and type this, are tears of overwhelming awe-ness....if thats not a word, it is now in my vocabulary. There just aren't any words to describe how I feel about my God.  I have had a relationship with him for over 18 years and I had heard of people being "in love" with him. I "knew" my God and I knew He was so real but it never seemed to travel down to my heart.  I knew I was missing something. I didn't doubt Him or my faith for He has made Himself so real to me but there was this shield up that wouldn't let Him penetrate any further than my brain.  Today my heart is over flowing with love for my Savior.  His blessings are so numerous.  He has brought me to a point in the last several weeks where I can say I am glad I have Lyme and that it is well with my soul.  I surrender to Him to do with me and use me as He wishes.  This surrender does not come easily and doesn't make the disease easy or fun or comfortable. However, it does make it easier because I'm not fighting it any longer. I'm not fighting Him any longer, wanting to control it my way and angry that my life isn't what I had planned. Its not about me or what I want or what I had planned. Its been difficult letting go of my idea for my life. I never wanted my girls to have to grow up with a sick mom. But my heart has let go and is trusting in my God and not in myself. This will be a daily surrender and it will be challenged daily.
God has taught me so much in the last several months. When they put the IV in the right arm I came to terms that I couldn't do things on my own any longer. I have tried for my entire life to do things on my own and as the disease progressed I became more and more frustrated that I wasn't doing things like I wanted them done, on my time, in my way...being independent. It wasn't till the IV was put in the right arm,that I finally came to the realization I had been doing this and that I could no longer try to do things on my own. I surrendered. I fell to my knees and surrendered.  I recognized I had been trying to do life without Him, only calling on Him when my efforts weren't working, as if I was bigger then He is.
Throughout this last year and a half God has been teaching me about relationships.  People are His hands and feet.  He didn't design us to live without each other.  After learning I needed help, He then began teaching me I needed to ask for help. Yuck! I have spent many a months frustrated that we didn't get help. People knew I was sick and struggling but very few helped us. God showed me, and eventually us, that we needed to ask for help.  Are you kidding? I am a pastor's wife, a mom, I'm supposed to have it all together. I am supposed to be ministering to others not the other way around.  Oh, the layers that needed to be shed. Along with recognizing we needed help, and that we needed to learn to ask for help, God also showed us that we had to learn to accept help no matter what. You can't choose where or who it comes from.  This wasn't as difficult to learn or accept. I had gotten to such a desperate place that any help offered was welcomed.
Our home the last two weeks has been showered with overwhelming blessings and filled with such big hearts of those helping us, but it only came when I surrendered to God and ALLOWED Him to be in control and help me.  One way he helps us or loves on us is through other people. I am so reminded of the story of the man in the flood who goes to his roof waiting to be helped by God. A boat comes and a helicopter comes and he turns them down saying that God will help him. When he dies and goes to heaven, he asks God why He didn't help him and God says, "I sent you the helicopter and the boat".  Our biggest hinderence is ourselves.
Through a disease that is so frustrating I first focused on what it had taken away from me...my piano playing, my ability to be the mom and wife I wanted to be, the things I wanted to do in the church and in life in general.  As God has worked on me this last month I know see the blessings far out weigh the losses. I am so blessed to be a mom to begin with.  I have the joy of waking up each new morning to two beautiful faces. Though I may get frustrated with them, they truly are such well behaved children with beautiful hearts.  I am so blessed to have a man who loves me and takes care of me. I hear of so many stories of a spouse leaving when the other becomes seriously ill. My man is so wonderful and loving and giving. Yes, he too is learning to not do everything himself. We are growing together!  He loves the Lord and loves people. He brings such humor into my life.  I will never forget how he is an answer to pray. In college I had heard how God's love is unconditional. I didn't understand this. I prayed God would show me his unconditional love and he put Chris into my life! I can't say enough about my man and how much I am blessed to have him in my life.
I am blessed to have Lyme. When you look at others who have had it as long as I have, they are bed ridden and wheel chair bound. God has allowed me to still function enough to homeschool my girls, but just sick enough enough to help me see what is important in my life...my family.  Laundry, clean house, and even activities at church are not more important than my family. I am blessed to feel just well enough to go watch my girls in their individual accomplishments.  I am blessed that my mind still functions enough to comprehend God's word, and to read to my children.  I am blessed to have a body that functions just enough to hold my children and snuggle and kiss and hug them.
Yes, there are material things we are blessed with like the house we live in (a total God send) but the true blessings are in the people in our lives.
There are so many "layers" God is working on me to shed and "let go". I am so blessed to have a God that invests in me, and doesn't give up and leave me where He found me. So, I am thankful for having Lyme, though its not easy being green, on the other side I will be a better person with a closer relationship with God.
This is only the tip of the ice berg on what He has shown me the last several weeks. I can't seem to get it all out in typing but if you ask me I can talk for hours on what He has been doing with us.  I am so thankful He has allowed my life to slow down so He can do some maintenance work on me and teach me, grow me, and spend time with me and teach me to listen to Him.  I can't get enough of it. Once you have experienced His peace, you will want and crave it more than anything this life can offer.
Happy Mother's Day!  Somewhere there is a mother that gave birth to you or one that raised or invested in you. You are a blessing!!! And there is a heavenly Father that loves you more than you can even fathom and He wants to bless you and show you His love! I hope you recognize you need Him, and then learn to ask Him for help, and then accept whatever He wants to do with you. It truly is a journey that will blow your mind if you slow down enough to let Him lead.

Afternoon Update

Today's check of the midline went well...long but well. I had a sweet lady from the church go with me and I am so glad she did. The place was almost full with questionable content on the tv that her poor little ears would have had to hear had it just been me and her. Instead, she enjoyed some one-on-one time with a sweet lady.  Maddie did really well today despite being dragged around.
The nurse didn't know why my biodisk looked like it did but was concerned with the tape over everything. She did a dressing change. The insertion point is a little more red than last week and little more puffy but it didn't appear to concern the nurse. She used a different biodisk (the original ones before the silver ones) and taped it differently. She was the only one working in the lab today and it took a while for her to get to me. Then she kept not having the right materials. Then I found out that she doesn't do midline dressing changes very often....aaahhhhh.  All in all, things are good and we are good to keep going. Of course, on the way home I realized the company (its all the same company called Quality Infusion) hadn't called to deliver the medication.  So, we are good to go but sort of not really. :)  I will need to make a call in the morning to see what happen. We have enough for tomorrows dose.  We got back to gymnastics with about 15 minutes to spare.  Did I mention how blessed I felt that someone took their afternoon to pretty much come "hang" with us while all this took place.  It has been a pretty good day. Thank you for the prayers. I was at such peace all day and knew that whatever came to be would be.  It is so not like me to be like that but I like it.

Update and Prayer

I haven't blogged in over a week. I wanted to last week but felt blocked.

Last Monday we saw our natural health doctor. We hadn't seen him in 6 weeks.  He had proposed some alternative methods he wanted to try in treating the Lyme but asked us to research and pray about them.  We did and when we saw him last week we let him know that at this time I feel completely saturated in what I can handle and don't feel I can do anything additional at this time.  I think he was disappointed but he understood....one reason I really like this doctor.  He also ran a test he hadn't done since our first visit. He took my weight (which was down..yahoo...wouldn't suggest this weight loss program for anyone else though :)  ) and then hooks up a couple electrodes and the numbers he gets he calculates and is able to tell you how much of your weight is fat, muscle and water, and how "old" your body actually is functioning.  I had hopes I would be "younger" but I was actually older and he didn't share how much older...scary. But he did say he expected this to go up at this point in the treatment process.  However, the numbers revealed I have lost 15 pounds of fat and 3 pounds of muscle.  He was impressed with the fat and not surprised by the  muscle but also concerned.  Its a balancing act just as with other diseases.  The treatment has to be enough to kill the organism but not kill the body.  He added an additional ingredient to my shake I do for breakfast to help with the muscle loss.

Tuesday and Wednesday I added this ingredient in and not 10-15 minutes after finishing my shake and morning meds I took a dive.  I had been sitting at the table with the girls doing school and had to then take school to the couch I felt so bad.  I wasn't sure if it was the added ingredient, or if it was that I had woken up with more energy than usual and just noticed the dive more.  I didn't know. Thursday I left the ingredient out and email Dr. Kolodjski (another thing I like about this doctor). Thursday the dive in how I felt wasn't nearly as bad. Friday I added it back in but not at full strength and the dive wasn't nearly as bad but worse than Thursday. By Friday afternoon I heard back from Dr. Kolodjski and he suggested not doing the shakes for 3 days and to keep note of how I felt (he has me keep a food journal and a symptom track daily).

This last weekend was one of the best weekends I have had in over 2 months.  I was surprised since we take the Flagyl and we are full strength with it.  Because I didn't do my shakes I had to find 30 grams of carbs some where else. So it was nice to have a slight change in my diet.  30 grams goes quickly though.  I would have a tortilla with an egg in the morning (theres have of the carbs) and something else in the evening.  One night we had chips and salsa (there goes all the carbs). Sunday morning I woke up aching in the joints but was able muscle up the strenghth (with the a lot of help from hubby) to go to church. Yesterday, we were out and about most of the day. Its the most activity and walking I have done in probably 2 months. I kept expecting to feel "fried" and crash but didn't. I was super tired at the end of the day but not "fried".  It was so nice.

I emailed Dr. Kolodjski this morning to let him know how the weekend went and he said his diagnosis of what going on is that the shakes are "detoxifying" my system to fast and/or I have established a sensitivity to an ingredient in one of the powders I use.  So, I am to have a shake tomorrow with just one powder and the next day just do the second powder and so forth.  It should be interesting since it took a while to get used to them together much less separately.  However, I noticed my energy level today is up..its difficult to describe.  I'm not as edgy, and feel like my mind is "clearer". I don't feel like I can run a marathon tomorrow but I can at least function with my kids without getting easily frustrated or exhausted.  Becka had more energy today as well and did so well with school.  We are all anxious for school to be done so we can just play.

This weekend (Sunday) I noticed some discoloration on the bio disk that sits on top of where the catheter goes into my arm.  It has been itching more than usual (it usually doesn't itch at all).  It still flushes well but I figured I better call and just make sure everything is cool. Becka has gymnastics today and it would be easier to run by and have it checked today while I am down there than tomorrow. I called and they definitely want to take a look at it.  If you are reading this before 5:30 on Tuesday please pray all goes well.  I have arranged for a sweet lady from church to go with me to cover all bases if needed. I will drop Becka off at gymnastics (I hate doing that) and Maddie and this sweet lady will go have the midline checked.  I am not worried about it.  Whatever happens, happens and God already knows about it. I am just on for the ride. I don't know if they will pull it out or not. If they do, they most likely won't put another one in today due to it being a special person that does it who isn't always there and the process it might take to have another one put in (paper work, another doctor's appointment, insurance, etc.)  We did ask Dr. Salvato that last time we saw her what would happen when this one had to come out and her response was to put another one in. As long as we are seeing progress (and we are) than this is our course of treatment.  Please be in prayer about all this. Insurance, due to lack of research and therefore lack of documentation by specific people-politics, has denied covering the medication past 4 weeks...however they have approved the midline (device it goes in) beyond that.  It is crazy.  There is research out there but if its ignored by the people that write the documentation for CDC and other important organizations that inform physicians, insurance, etc...than it affects how those with Lyme are treated.

I will try to blog and let you know how today turns out. Please just know I am at complete peace under God's grace about it.  It is well with my soul!