Inconvenience vs. Blessing

I'm at infusion. I can't believe I am starting the 4th week of coming everyday and doing two antibiotics, one of which was marked as "allergy" for the last 7 years. I have had days where it has gone long and I have itched. We have determined that Benedryl through the port does not agree with me at all. So, I do what I can to avoid reaction to this antibiotic so I don't have to have the Benedryl. They can also give me another medication for reaction (decatron?) but it is steroidal. From our research in the beginning, steroids is not good for Lyme but quite bad. However, after our two bouts with the Benedryl not agreeing, and me being pretty adamit about not doing the other (I really don't care to take anything that will encourage the little boogers), Chris found where, if you have to do it, that they prefer you be on antibiotics. Either way, I don't care to have to have it but I also don't want the antibiotic taken away because I couldn't "tolerate" it.
IGenex test came back positive. This is all I know for now until we meet with the doctor and get more specifics. The important thing is that its still positive and therefore she stated we would continue treatment. The Lyme symptoms have really been apparent in the last several weeks. This is frustrating but I am hoping the strong treatment is just bringing out the Lyme and its being killed off with treatment. That's how I choose to look at it for now, but it does nag at the conscience that all the tests will point to remission and I will be stuck with these symtpoms.
Today, yes today, I finally found a lab that may know what they are doing and I will get the other test done this week. Which leads me to my thoughts for the day: Inconvenience vs. Blessing.
I got up early this morning after a rough nights sleep and left the house so I could hit a LabCorp to have two orders of tests done and so I could get to my 4-5 hour infusion, get it done, and get home with my family. After 2 different labs, phone calls and driving around, and a couple hours chasing a place to get this test done I got an answer. Inconvenient, yes. Pain, yes. BUT, in the process I thanked God for a husband that is willing to be home on his day off and do school with the girls so I can take care of this and do this. In the process, I was able to answer several texts from people and listen to a friend share her frustration and be there for her at least by phone. I have another friend whose daughter is having a surgical procedure today and I prayed and texted her that I was thinking about her and praying for her.  I was able to "touch base" with several people=Blessing! Lyme has been an inconvenience but also a blessing. Lyme has been very difficult and challenging but very rewarding. Lyme has cost us so much but I have gained so much through it. Through it all it has transformed me both cellular and in character and the way I think. I have been forced to slow down and not do what I thought I wanted to do but in the slowness I have heard God and felt Him tug and pull on my heart. All this and more would not be possible if I didn't have Lyme. I love being slowed down and yet given an ounce of energy I find the old self quickly rear up and want to run around with my head cut off. For now, there has to be a balance and I have to ration my energy and strength.
Saturday was a perfect example of this. Chris scheduled this youth event called "Dinner for 10" where there are 2-3 adults and 6-7 youth, females at our house and males at another house. I took Maddie to dance, came home and started cleaning house and cooking for the evenings event. I had planned a nap, which is so vital to me surviving this kind of activity, but it didn't happen. In the midst, if I'm not completely knocked down with a migraine or how I feel, I don't realize I am over doing it as I bask in being able to have a taste of productivity and "living". But as soon as I slow down or sit down it all hits, and then I am down the next day completely. Is it worth it? Yes! But I have to be choosy in what its for and how often and I have felt a slight panic setting in because this time last year I ended up in bed all December. We believe its because about this time of year every weekend is booked with holiday festivities and things to do for them. It is so easy to have a full plate and before you know it you are running around with your head cut off. I think that's exactly what satan wants so that we don't have time for what really important, we lose where our focus should be (on God and not on Godly activities), and then we can't hear or feel God tug and pull and direct. It is so easy to do. Our society thrives on the hustle and bustle. Its almost looked upon culturally as unacceptable if you aren't running around with your head cut off.  I get frustrated that I can't do what I want to do, and what I want to do is not "inappropriate" or ungodly or crazy.....teach piano, help teach Bible Drill, help with Kids Praise, attend Sunday School, attend women's conferences, go grocery shopping on a weekly basis, get the laundry done on a weekly basis (currently going on 4 weeks of being behind on this), keep my house picked up and fairly clean, teach my kiddos and do more then just the basics and thrive in "survival" mode but really get to do more activities with them, practice and play the piano regularly, and the list goes on. However, I am thankful I have Lyme that has forced me to slow down (okay, at times come to a halt) and therefore, I have been more available. Available to take a phone call from a friend. More available to pray for friends and family on specific things and as God brings them to mind. More available for snuggling with my girls. More available to have tickle fests with my girls. More available to hear and feel from God. More available to interact with people I don't know and listen to their cares. Somehow Lyme has made me more bold, and though maybe weaker for a time physically, it has made me stronger as a person. And the list goes on. There are blessings in inconveniences!

Still Fighting

Its been so long. I have blogged a couple times but just haven't posted them. I'm sitting here at infusion and for the first time in quite a while I feel moved to blog. Just not sure where to start. My type A person wants to begin where I left off but so much has happened it is overwhelming thinking about trying to "catch up". I'm also at a weird place right now mentally. The last two weeks of infusions has really worn on me. I also didn't feel my blogging was accomplishing anything positive so I would blog for my own record, but I received an email from a fellow Lymie that really encouraged me and inspired me that maybe I should blog again, not for family and friends but for other Lymies because its affirming to talk or read that someone is struggling with the similar things. I gave up keeping friends and family "updated" especially after these last 6 months when things got so crazy. It became apparent to Chris and me that if people really "wanted" to know, they asked. I have never been one to shove my disease down people's throats but if you ask I am glad to share. Unfortunately, a lot of times people ask just to make conversation or appear social and then they get more then they bargained for. So, we have kept pretty much to ourselves about what is going on.  Unfortunately this can feel pretty lonely. But we have come to realize in the last year and a half with this disease and in fighting it that we have to surround ourselves with people that are going to support and love us whether they agree or understand.  I thought I was crazy at first thinking this, ignoring my body's response to "negative" or even challenging relationships or interactions. Then, recently I began reading a book called "The Road to Immunity" and the author, Dr. Bock, says, "To get my patients healthy (and to keep them that way), I recommend a combination of traditional medical practices (for example, medications or surgery when absolutely necessary), natural healing therapies (including a sound diet, vitamins, nutrients, herbs, homeopathy, and acupuncture among others), and emotional support (such as stress management and psychotherapy)." Part of my stress management is limiting putting myself in position where I know it will be stressful. Dr. Bock goes on to say, "We can start by shielding it from unnecessary strain or damage and by providing it with the nutrients it needs: fresh air, clean water, healthful food, and love (yes, love is a nutrient)." This affirmed that I am not totally crazy in how I approach interactions and what situations I put myself in.
Love is a funny thing. Everyone has a different definition of Love.  I choose to use Christ as my example. He loved the person, didn't always agree with what they did or the choices they made, but He loved them and cared for them, and He never gave up on them unless they blatantly denied God. The interesting thing is that every person Jesus came in contact with were fallible, imperfect, and He never gave up on them.  Unfortunately, one thing Chris and I have learned is that trials of life can shrink the circle of people you thought you could rely on to a remanent.  But we have to remember that Christ was perfect and people are fallible...so fallible.  I believe that one of the many things God wanted to bring to my attention through this disease was that what I relied on here on earth would let me down and when would I begin to rely solely on Him, trust only Him, and look to Him for what I needed.  I can't say I have fully accomplished this but I have gotten better. I will say that this disease and all we have been through with it has brought my immediate household closer.
This last March I began to feel a "switch", something positively different. I was on Zithromycin and Flagyl and many supplements. I felt I was a bit more functionable but at the same time other things starting going hay wire. I began losing weight, my hair was falling out by hand fulls, I was losing my hearing, and my vision in my right eye was getting progressively worse, to just name a few. I new these things weren't "normal" or good but I figured I was more functional so maybe it was all in my head just how bad it was.
In June, after having put up with "bucket head" symptom for a year and it had gotten so bad, I decided to see my ENT that I love and that has stood by me since 1999.  This is when I found out I was losing hearing. He was very concerned and felt it was the Zithromycin and wanted me in to see my lyme doctor ASAP. We researched Zithromycin and did read where it can cause ototoxicity.  We scheduled an appointment with the lyme doctor and had a battle plan of what antibiotics we would talk to her about switching to. We never got the chance. She saw the weight loss (at that time 117) and she flipped and pulled me completely off treatment and this is after she had always said she would never pull treatment in fear it would cause me to back slide. She sent me to a GI specialist. Tests were ran and they revealed that my esophagus was so inflamed she stated she didn't know how I was able to get water down. I was then at that point, taken off all oral meds.  Within weeks of being off all oral medications my lyme symptoms began coming back. I emailed the lyme doctor and pleaded with her, not knowing how long it would take for the esophagus to heal (resulting in a new diet of no meat or dairy...only soft foods...I've lost count what number of diet this is), to revisit starting treatment back up, only parentarily (IV).  She agreed and after being off of treatment for 3 weeks I started treatment back up in the infusion lab through IV, 3 times a week receiving Rocephin and also vitamin C for immune support since I couldn't take any of my supplements for immune support.  I did notice a different in getting off of all the supplements. I do believe in the beginning they were helpful but towards this point they had become more toxic to the system (I was taking 15-20 pills a day...thus the esophagus). The digestive system was trashed and probably not absorbing much if at all what I was taking. Some of the medications, like my migraine preventative, are supposed to be slowly decreased and I cold turkey quit. I saw no side effects....again, probably because I wasn't absorbing the full doses.
The first day back on treatment it only took the nurse 2 sticks. The veins have been through a lot in the last 20+ months. However, the second day of treatment she stuck me 4 times and couldn't get a single vein. They would just blow. At this point, frustrated because I'm wanting my treatment, the nurse contacts the doctors office and goes to bat for me on a PIC line.  In thinking through this, I have had a midline and a PIC (which did not go well at all). I had been down those roads.  Since we didn't know how much longer I would be fighting Lyme, nor how long it would take the esophagus to heal, I emailed the doctor and pleaded my case for a PORT. I was told she never agrees to them via email so I had planned to be in her office the very next morning first thing. To my surprise she agreed.
This was all the week before I was scheduled to fly out to see my grandmother. So, I was hoping it could be done the next day, Friday, have the weekend to heal, and possibly fly out. Nope! I had to see a surgeon for consultation before it could even be scheduled. This consultation took all day Friday with more tests and the procedure was scheduled for Monday...the Monday before the Wednesday I was to fly out.  The procedure, which is another whole blog in itself, went well, but being a surgical procedure where they implant a device in your chest that has a catheter that leads to the heart, has two incisions.  I had my first treatment with it that day, and also saw my GI who ordered an MRI of my bile duct in which they refused to use the PORT for the dye.
It is difficult to put into words what May through now has been like. The above is just a sampling. It was always something we had to fight through, or another doctor to see. The summer was spent traveling from one doctor to the next. Things kept changing weekly, sometimes more then that.  There's no way to capture it all on paper.
I rescheduled my flight because with the new PORT was more dependent on others and wasn't good for anything. A week made a big difference and with some assistance I was able to fly out to see my grandmother. I found it interesting that to get any kind of help at the airport I had to sit in a wheel chair.  But I complied,...when you are in discomfort and unable to do things, sometimes you don't have a choice.
After about 4 weeks of treatment through the PORT my cd-57 went up to 55, the highest it has ever been (180 is our goal).  I truely believe its because we are doing treatment through the PORT which goes straight to the heart and the vitamin C has also played a part. If you read up on vitamin C done intravaneously it is used for cancer patients to help with detoxing as well as other things (you won't find Lyme mentioned....some day you will). After the first 4 weeks, there was a week off of treatment and I went down hill. The little energy I had and functionality declined greatly. We went in and begged for another 4 weeks.
Two weeks ago we scheduled another appointment after being on treatment now for 8 weeks with the PORT to ask questions. I had this nagging feeling (aka God) that if we needed to do treatment five days a week for a month and then take two weeks off . The two weeks off was my idea just to appease the doctor who keeps threatening to take me off treatment to give the digestive system a break. Um, hello, why would I want to take a "break" when numbers are finally going in the right direction? Remember the last time she took me off treatment? My lyme symptoms came back and they continue to worsen with each day. So, we went in to do battle again. I also had questions and other "suggestions". I was so afraid I wouldn't remember them and think clearly and I was afraid to present my ideas because I didn't think she would go for them. I so dislike that I, the sick one, have to be the one on my toes and know what to ask or it feels nothing happens.  The doctor came in and God took over. I had this clear mind accompanied by boldness and I remember my questions (Chris couldn't keep up with them on his phone) and just went "bam" "bam". When I mentioned doing treatment five days a week she shook her head no. I asked why we don't test the lyme test through iGenex, the most sensitive lab (I knew the answer but wanted to put it out there) and she said because insurance doesn't cover it but said she would run it this time through iGenex. I had also pointed out that we had always been doing at least two antibiotics and should we be doing two now. Her answer was no. Chris began to ask if we are doing everything possible and I mentioned that I was even willing to try Vancomycin, a medication I reacted to when I was in labor/delivery with Maddie (?) and have been labeled as allergic to, but its the best antibiotic in fighting Lyme.  I, being a good lawyer, pleaded my case that I'm under supervision in the infusion lab and if anything happened I was in good hands. She agreed! Ha! So, we leave to go do an infusion using the Vancomycin. I sent word out to my prayer warriors to pray that I would tolerate it. We get to the infusion lab and come to find out she not only put Vancomycin with vitamin C, but left on the Rocephin and prescribed it five days a week. Unbelievable! Everything I asked/addressed she did.
I got through 3/4 the bag of vancomycin and began to itch like crazy. I was so happy that I got through that much. I was given benedryl through my PORT (nasty!!!) and had to stop the infusion. Within about 10 minutes I was in the public bathroom sick to my stomach and doubled over for over an hour before I could get up and walk out. Afraid it was the vancomycin I didn't tell anyone and prayed the whole time that no one would walk in and find me doubled over on the floor. I knew they would call 911 and my vancomycin would be taken away. I prayed and prayed and got through it.
So, for the last two weeks I have come every day to do my infusion which takes about 4 hours. The last two weeks the girls would come with me and we would do school here at infusion most days or I would come in the afternoon with Becka and she would finish school here. Last Friday, I fell apart. I think the two weeks of dragging everything and everyone to infusion and sitting here for 4 hours trying to do school wore on me. After my infusions I am zapped!!
Yesterday, I came by myself (first time) while Chris stayed at home and did school with the girls to try to relieve the stress and when I woke up toward the end of infusion my IV was dripping super fast and I was itching. I was given benedryl again through my PORT and again I ended up sick to my stomach and doubled over for an hour. It was as bad as the first time but still pretty bad. The other option is a drug called Decatron which is steroidal which is not good for Lyme.
After 8 weeks of doing treatment through the PORT my cd-57 is up to 142. We are still waiting to hear from iGenex. So much will be determined off of that test. If there are NO bands present on the iGenex test, this will probably be my last month of antibiotics. If there are bands present then we will probably continue treatment. The only concern I have is that my cd-57 is up and if the iGenex comes back completely negative and we still have all the lyme symptoms. I have felt that I have slowly degressed back to where I was before we started treatment.
My computer is dying so I need to stop. I hope for my fellow Lymies this is helpful in some proportion. I have learned so much just in talking with other Lyme patients here in the infusion lab. I now know more people with Lyme then I do with cancer. It blows me away.

God is Gracious

Life with God is such a crazy ride. I am continually blown away by what He does and then I am shocked that I am amazed. I knew in my heart He could do it but to witness it, and to be allowed to be involved is something different. Anyway, He still amazes me.

I think the last time I posted I mentioned a switch I had felt, a change. Somewhere around my birthday in May, I had a week of headaches/migraines and the after that I no longer felt the switch or change. The old mono feeling was back and this really bummed me out. Sometimes I think I'm allergic to end of semesters or vacation times (summer, spring break, Christmas break). I fight the "it doesn't seem fair" attitude because I so look forward to these breaks to spend with my girls and the last thing I want is to spend them in bed like I did in December. Can you tell December left a bad taste in my mouth? Out of this entire journey it has been the worst month for me mentally, spiritually and physically. 

What I began to notice with the headaches was that they weren't responding to meds so I felt they had to be more due to toxicity. About this time I had begun to get an appetite back from months of having a strong aversion to food so I was eating what ever sounded good just to get food in my body. But the wrong food increases toxicity. So, I began to focus more on right foods to decrease the toxicity and the headaches slowly decreased. The other thing I think that is knocking me down is the heat. My girls are on a swim team and we have practice 4 days a week and even though I would sit in the shade I think the heat was just zapping me, especially at the first swim meet.  Any amount in the sun just zaps me completely. I have also been "running around" a little more then usual, trying not to be sedentary because of the heart and because I want to be doing things but it also zaps me and when I get going I get run down. There has got to be a happy medium somewhere but I haven't found it.  Then when you put in the mix my bucket head symptom, I go nuts.

This last week Chris was out of town at youth camp. For the first time in 18 month of treatment he didn't arrange "babysitters" for me. I am always nervous when he goes out of town. Its a sense of not being able to handle everything on so many levels.  I began praying about it a couple weeks before he left. I don't like asking for help. If someone offers I will gladly take it but I'm so tired of asking for help. I want to much to be a functioning mommy/wife. I see so much of things that need to be done and that I want to do around the house but just don't have the strength and stamina to do them and it drives me crazy lately.   I'm better off really sick in bed because then I don't care but when I'm this middle stuff where I'm well enough to be up but not well enough to fully function its like a tease. 

A couple days before Chris left a friend of mine offered to take the girls to swim practice this week for me so I wouldn't have to sit out in the heat. At first I did not like the idea because I love being there with my girls, for my girls, watching them. I want to be there for them as much as possible knowing there will be days I won't feel well (like the week of headaches/migraines) and can't be there. But the more I thought about it the more I knew it was the smart thing to do. I also struggle with allowing someone else to go out of there way to help me...was it guilt? I don't know...it was uncomfortable is all I know. But the more I thought about it the more I knew it was the best thing to do. With Chris gone, I needed to reserve energy, and with him gone I would have no relief or break or reprieve. So, reluctantly, I said yes and I hated staying home and missing their swim practice and not getting to watch them swim but knew it was best for my health and knew it would give me more strength for their swim meet later in the week.  

God also provided another friend to take the girls to the library one day. Again, I felt guilty but allowed the blessing and tried to store the energy and but all the while I sat at home doing tail spins. I like my chickens at home with me. I'm not much use at home alone either. I think too much and I can't dive in to any of the projects that have been yelling my name for over 18 months. That would defeat that whole, "save your energy" idea.  God also provided another person to bring us a meal Friday so all I had to do was heat it up after getting home late with the girls after Becka's gymnastics. As the end of the week came I was so thankful for what God allowed for me. He allowed me to feel well enough this week that I wasn't in bed, I wasn't herxing this week. He allowed me to enjoy my girls. We made cookies together for them share at the swim meet (its been so long since we made cookies together). They helped me a lot. We got into a rhythm where Maddie emptied the silverware of the dishwasher and I did the rest while Becka washed dishes (that kid loves to wash dishes...she hates to put anything in the dishwasher). I didn't do great this week as there was one day I forgot to eat because I was so busy (the day we made cookies and I had to pack dinners for the swim meet) and I forgot two days of my shot, but God allowed me to be more functional this week while Chris was gone then I have been in a long time. I felt crummy but functional. I can handle crummy most of the time if I can just function. I get a little crabby by the end of the day, but I can handle crummy if I can function. 

Before Chris left he had a female leader back out and I was trying so hard to figure out how I could go to camp. Even a couple weeks before that I was trying to figure out how I could go. I can drive a van. I can lead a bible study.....but thats about it. The kids need more then that. It stinks! I want to be more then that. This time last year we said I would go this summer and here we are and I'm not going and we are saying, "next year". Ugh. Chris and I laughed because I can barely get ready for church without getting bucket head and if allowed to persist without lying down it gets painful in the ears. It is so frustrating to look normal and not be.

I look back at this week and see God's hand and how he sustained me but its like it ended at midnight last night because I get up this morning to get the girls and I ready for church and I'm falling apart left and right. I step on the scale to find I've lost two more pounds. I'm 6 pounds less then the last time the doctor saw me and she said she didn't want me losing any more. I step in the shower and I'm scare out of my whazoo at a brown clump on the floor. Its a wad big wad of hair. I had noticed in the last week or so that my hair was falling out again. It seemed like I was filling a brush each morning. This morning in the shower I had locks of hair just coming out. Now I know why the wad of hair in the shower. This didn't help. In the middle of the shower I just emotionally just bend over and fall apart as if I had been pretending all week, or holding my breath all week and now reality was hitting or someone hit me on my back and a big gust of air came in only I couldn't breathe. What was going on? Where was God's sustenance this morning? I would think of all mornings, He would provide this morning so I could get to church and worship? Yet, I know I'm under attack. I'm emotionally a wreck. But as long as I am physically feeling well enough, I am going to church. I may ball off and on and be an emotional mess, but I am going to church. People at church already know I'm weird. But today has just been one of those days where everything has culminated together where I just feel isolated. Chris is in his own world, off saving the world, as I put it. and I want so much to be a part of it, to serve with him and I'm not. Its not where God has me and I'm really struggling with that right now. I feel stuck in my four walls. Again, at church I have well meaning people say, "you look great" and especially after a morning like this morning its all I can do to not just scream!  I guess I should be thankful I look great (thats God shining through me because I'm happy to be in His house and to be around people not because I am whole and healthy) but its difficult to be thankful for something you don't believe. 

I guess there is this raging unsettledness. I wouldn't trade Lyme in for the world. Its ugly, its been mean (that's putting nicely), it has stolen from me,....in all better terms, it wasn't my plan. But through it I have a closer relationship with God, I have grown as a person, I see some things clearer and don't want to go back to some things before treatment days, and my family has grown together in so many ways. Yes, we have struggled too, but I think we have grown more and I'll take that.  I want to be content where God has me, I really do. But the human side still itches and yearns for her plan and right now just itches to get out there and be involved.  I simply want to function as a wife, mom and  woman of my church and don't feel that is too much to ask of God. I have a heart for girls ministry and to serve with my husband. I have a desire to go beyond pew warmer on Sunday mornings. But I also know my God knows me better then I know me and I know He has a plan and He is still training me to follow His plan and not my own.   I feel like a race horse in the stall waiting for the door to fly open so I can run the race with God as my jockey. I'm antsy. I'm anxious. I know there is a race. The race of my life. I know who is in control. But dad gommit...when will they open the gate and let me go! Yup! That's about the best way I can sum it up. 

Who Is That Woman?

So today we had pictures taken for a pictoral directory for our church. Wouldn't you know it I have been down since Saturday afternoon with what is probably a herx. Started not feeling well Friday but it really kicked into gear Saturday and I just kept pushing it not wanting to go down. Yesterday had an appointment with the cardiologist and so I pushed it again yesterday when I really should have been down. Its the headaches and nausea which is usually part of a herx and I'm hoping its a herx and not a December repeat. I'm a bit nervous about that. We backed off of the Topamax that helps prevent the headaches in hopes of gaining some weight but if this winds up not being a herx a dive downward then we will have to go back up on the Topamax and I'm afraid the appetite I just so recently gained back will go away. Its such a vicious cycle and feels like such a delicate balance.
So, we have these pictures scheduled for today. One thing we have learned with Lyme, especially in the last 16 months of treatment is not to schedule things because we don't know from day to day how I will feel.  But some things can't be avoided altogether.  Today was a killer and I took migraine med on top of migraine med trying to make it, trying to fight and push my way through.  If there is something I have also learned to do thanks to Lyme, its fight and push through....sometimes to my detriment though. I was laying in bed this morning thinking, "all you have to do is show up, take a few shots and then come back to bed,"...and then I realized "shots" = flashes...migraines worst enemy. I did what I do best and fought my way through it. But I wasn't prepared for what I saw....or who I saw.
I dressed our family up in the outfits we wore for a special occasion this last December (I felt crummy then too, but I think I looked ten times better) when we took Madilyn to the nutcracker for her birthday. I don't have much that fits anymore and I barely got by wearing this today. I would have rather put the family in something springy and colorful but I don't have anything that fits....literally. Some would say they would love to have this problem (I've heard it already) but I beg to differ. Though I've been tempted to try on the wedding dress to see if I'm that small or smaller, and have enjoyed seeing the waist line shrink, its not a nice shrink and when you go from clothes fitting to nothing in the closet, not even underwear (sorry for the personal) fitting it becomes a challenge, and it happened under 6 months. Now, as much as I would like to keep most of it off, I don't know what will happen so I'm not about to go out and by a whole new closet complete with the essentials of clothes, only for Lyme to throw me another loop and I blow up the other direction.
So I had us dressed in clothes that had a special meaning, so I thought, though they were wintery, though dressy, but I didn't feel well at all. Lesson #1: Don't have pictures taken when you have a splitting headache and have taken a ton of migraine medication just to help you function enough to get to the photo shoot.
The other thing, besides clothes and headaches I was battling with was my hair. Since December my hair has taken on a new attitude of its own. It literally looks to me as if someone took a frying pan and fried my hair. To add to matters I have had some kind of reaction to something since March and have fought what appears to be acne all over my head which has moved down my neck and on to my back but it itches and the more I itch the oilier my scalp gets. So I have oily fried hair that no matter how hard I try to straighten it bunches up and since it falls out its thin on the ends.  Its just a wreck. Its not my hair.
I tried to not let any of this discourage me going into this appointment today. People, including my husband, said how beautiful I looked but I didn't feel "beautiful" one iota but I tried to let their compliments sink in and replace what I felt.
It wasn't until we looked at the proofs that I really was shocked. I was staring at a woman I really didn't recognize at all. I didn't like what I saw. I didn't think she fit with the man or the two girls. She didn't look like Chris' wife and she sure didn't look like those girls mother. It was an awful feeling. I just didn't recognize her at all. Normally, you find one pose or picture you like but this woman just didn't belong at all.
I really wanted to buy a tri picture with the husband and wife in the middle and a picture of each daughter on each side. We went through the process of picking through the pictures. There was a gorgeous picture of my husband and one of each of my beautiful girls that showed their personalities. But I couldn't get past any picture with the woman. I got thinking about the tri picture and thought, "every time I look at that picture I'm going to remember this day and this time in our lives" and I'm not sure I want to memorialize it with that much money and in this way.  The man pushed for the sale and when I explained he said I should look at it from a different way that when I look at the picture I should think of all that God has brought me through.  I have thought of that all afternoon and have wondered if I am too negative again. But I explained to him in response that I would rather spend that kind of money on a photo shoot after I am well, one that I can enjoy and have fun with family as a celebratory photo shoot and hang that on the wall to show what God has done then to have today hanging on my wall.  I don't want that strange woman in my house, on my wall, standing with my husband and my children....though I know she is day to day....I know some day she will be kicked out and the real Elizabeth will step forward and will regain her role as wife and mom in this house.  
We did get a free 8X10 of the family and that will be all we need to remember this time in our lives. To look at it will be haunting enough. I look forward to the day I can replace or accompany it with the "VICTORY" picture.
For those that don't know, which is most if you don't talk to us on a daily basis, I walked out of our last Lyme appointment more encouraged then I ever have. For the first time I have a peace about "if" I will go into remission where up until now I questioned it....it felt out of grasp.  The question now is "when" and I try not to hang on that for only God knows when. In talking to the Lyme doctor she emphasized the length of treatment which basically told me to hang in there, hold on. She also made the comment that she felt Lyme was more difficult to treat then Cancer and HIV.  For the first time I felt affirmed in my frustrations.  She did point out that our last two Lyme tests both had positive bands but that the bands were different on both tests showing that different antibodies were being exposed. This was encouraging. She ran the usual tests...sort of. The Lyme test this month came back with no bands on top and one band on bottom, and for some reason the CD-57 test was not run. I think this was an oversight on someones part and for some reason I was okay with it. She did test ATP and it was 48 which is the highest it has been. It was last in the 20's. I took this as encouragement and progress. We don't see her again until mid July and tests will be done again then. Though progress is not leaps and bounds, its still progress and as long as we are making some type of progress I am encouraged.  The body is tired and weak and the mind is weary but the spirit is strong and I will continue to fight.  I've got to so I can kick that woman out of the picture and regain my position, my role in my family :-)

Going to be Random

 am laying here unable to sleep, wanting to be in church but the body is not cooperating. After a night of little sleep and after taking something this morning in hopes to get some sleep only to find my self wide awake but groggy I decided to put thoughts down in the blog. Due to the lack of sleep over the last several months and the sleep aid in the last couple hours I'm sure my thoughts will be random but never the less, still my thoughts.

The ever eluding sleep thing is really getting to me. We have been given four different sleep aids to try to get me to sleep at night and yet sleep eludes me. For example, last night I felt the effects of the sleep aid, sure that I would crash when I put my head to the pillow and yet as soon as the my head hit the pillow my eyes are shot wide open. I try to lay as still as possible in hopes the body will slip into sleep. I pray hoping I will slip into sleep as I pray but I find I run out of things to pray for...literally. I try just laying there listening to my heart beat in my pillow. I try all kinds of things and before I know it several hours have passed. Last night I looked at the clock and it was 2 o'clock and I was still wide awake. Some time after that I drifted into a sleep where I fall into a half sleep and then wake up, drift wake up, drift wake up, and this continues for the rest of the night and I toss and turn. I think I might have finally fallen asleep around the time Chris' alarm went off. There is no deep sleep. Its all superficial. I can't think of the last time I had a great night's sleep....before January.

At this point in our journey I am not only physically drained but I am emotionally drained. I feel I live each day in survival mode, ending each day thanking God I made it through another day without disastrous events.  I still have days that are rough and days that are managable. I believe we have had 4 herxes since we switched to zithromycin in January...one being this last week.

The last several week have been interesting because I have had random things reappear or happen. My head started itching a couple weeks ago so bad I had Chris check for lice. Natural health doctor says its the over build up of yeast in the body. Not to long after the head started itching I broke out in a rash that last for almost a week. It was between the knees up to the neck with some spots on the arms. Clueless as to what sparked that. Then I had, with what I think was the latestes herx, a reappearance of old symptoms, severe calf cramping, shoulder muscles tightness, swollen lymph nodes, hips stiffness, back aching, headaches, hands hurting, nausea, etc. All this is goes back to before treatment began which I find interesting, especially since we have had 3 bands reappear on our Lyme test.  I'm hoping all this just means the bacteria is coming the to surface and is being killed. These are my hopes.

Other weird things are a bruised toe nail for no reason. Natural health doctor says its just super sensitive. Lovely. Welcome to my body where anything can happen and its one thing after another. There is always something nagging at me...not one thing, usually more.

The heart appears to be much happier on the 10 mg of Coreg now that we have backed down from 30 mg. The chest tightness and constant trying to get in a deep breath of air, and getting out breath doing simple tasks has gotten better and the blood pressure has returned back to my normal low (97 over 57) and not the super low (81 over 47).  I still have bucket head that gets annoying anytime I am up and moving around which I am supposed to be doing more of to recondition the heart. Basically, it feels like I'm breathing out my ears and I have feed back in my ears. I can't tell how loud I'm talking and I have difficulty understanding others. Natural Healthy doctor says its related to blood pressure and to take it as a sign to stop. Hmmmm, doesn't take much to get bucket head. I get bucket head getting ready for church.  Why, just taking a shower I get bucket head. Basically she said that the heart's structure is in good shape but its just "pooped" out.

My last post I was at peace, layed back, chilled. And somewhere over a weekend or night I lost that peacefulness. I seem to go in waves of this and I'm trying to figure out why it happens because I would much rather live in the peacefulness then in the state I'm in right now which is more cranky...I'm sure there is another word for it.

It happened around the day I had the CAT scan for the heart. I had never felt so alone in my life that day while having that test done. Chris was out of town. In some ways I began resenting him for being out of town. I felt like he is able to just go on with his life, saving the world and I am left behind. I felt I had no advocate. I just felt extremely alone. I felt other people had people to take care of them but that I didn't and that I needed someone but that I needed more then hour here and an hour there. Maybe I needed more then anyone was capable of giving. The whole purpose of this test was to keep the heart beat down and they kept asking me if I had been given a prescription to take before the test. Um, no. I tried not to get upset that someone messed up and just kept reminded myself that things happen for a reason. Then they handed me a clip board and while two nurses stood in front of me I filled out questions about the monthly cycle. Without my phone and without my husband (whose my memory) I was at a loss. I didn't know what the date was, couldn't remember the month and was so scared they would declare me incompetent. I asked what the date was but then couldn't subtract my cycle day from the date. So, I took a stab in the dark and just guessed at the date of my last cycle. The next thing I know I'm being asked if I can be seen in private. I immediately felt like I was in trouble.  They explained something to me that my lyme brain understood as they thought I was late and possibly pregnant so I tried to explain that I don't process things well and that I'm not late but that I am 13 days into the cycle. They then explained they understood that and said they couldn't do the test because I couldn't be pregnant. Frustrated I explained that couldn't be for other reasons. They laughed and said thats what they needed to know and for me to put that on the form. Frustrated I wrote it on the form.  They had to call the cardiologist to call in this prescription I was supposed to have to lower my heart rate to take this test. As I sat in the room waiting for all this scripture came to mind but then I would get all teary eyed. I tried to pray and I would get all teary eyed. I would think of my girls and I would get all teary eyed. Great! There was nothing I could think of that would help. I just felt desperately alone. And I think it was here that the walls came up and the peace dissolved away.

I have a friend, one of few who has stuck by me through this journey and has not been sifted through the sifter of the illness. Occasionally she writes me a message...its more like a small letter on facebook, and it does my soul so much good. I told her it like a window for me to look out and it gives me a glimpse of what is going on outside the four walls I live in.  Her letters do so much to lift my spirits. I know she thinks she is just "rambling" on but I love it.  I am just extremely lonely right now.  I am beyond dry in adult fellowship, spiritual fellowship.  I yearn so badly to be involved in things at church but the body doesn't allow. I'm good to just teach my girls school and get them to their one activity each and I barely do that. I don't cook, clean, or do anything else.

If I could find a black whole to crawl into I would, one where I could just listen to my praise music, and read my bible and talk to God and just hang with Him till this whole Lyme thing was done. I find comfort knowing that God won't get sifted through the sifter of illness as others have. It is painful to watch as friends have fallen away as if unable to handle a long illness. A long illness will sift who your true friends are and it has been painful to see some who I thought I could count on fall through. But my God cannot be sifted. I feel I am hanging on by finger nails hoping we beat this Lyme before all the meds beat the body. Either way, I know God will see me through. I just wish I could do alone in private with Him and not have to see the effects it has on those around me, especially those I live with.  I am physically and mentally exhausted. Anything I need, anything I have comes from Him. I have nothing on my own.  Survival mode. One day at a time. Hoping for a change

Blessings

For the first time in over three months I feel led to blog. A lot has happened in three months. They have been the toughest months in this journey yet and yet I wouldn't give them up for all the gold in the world.  It would take me pages and pages to catch the blog up on the last 3 months on exactly what has happened and my old type A self really wants to but my new self is what is heavy right now and is what has led me to write tonight.

I don't know where to begin and probably won't make sense to anyone but want so badly to capture what is going on inside. I don't want to lose any of it. I forget most things. I don't remember most things. I see names on facebook and know I knew them in high school but thats it. I get things so mixed up all the time and don't remember day to day things. We have a saying in our house, "you've been Lymed". But what I'm experiencing I so don't want to forget or let go or lose. Its been something going on for a while but appears to be working in over drive today.

Lyme has caused my life to come to a halt. It was gradual at first and I fought it so badly, especially as we didn't get answers and doctor after doctor told us I was "normal" (no one is normal, by the way) and so I went on with life.  The last 3 months were another notch in the slowing down meter. Didn't think it could happen but it did and I know now it could happen some more. Each time the notch is turned down God shows me something new. I'm not making sense and its not coming out like it is in my head.  Basically, when you jump, or are pushed off, of the merry-go-round of life some things are clearer, including the voice of God.  The world looks different off of the merry-go-round then when you are on it. Without going into it, I personally prefer the slower life.  I am at the mercies of my savior for everything, everything. There isn't words to describe it really. I dropped the girls off at church tonight and came home and there is an internal struggle because there is just enough strength to do something but no near enough to do anything great (i.e. laundry, clean house, anything that needs to be done). So, I stand in the middle of the house and wonder what to do. I don't like to just do something to do just do something not that I can and get to do a whole lot anyway. I took Becka to gymnastics Friday for the first time in weeks and have 3 1/2 hours to sit there. My mind (the old self) immediately goes to "what can I get done while I'm sitting there"....Ms. Efficiency. I start running through things in my head like organize documents for taxes, grade papers for the girls schooling, etc...things in my mind that "need" to be done, right? But inside there is a nudge that says, "no". What? But they need to be done and for once in the last 3 months I have a smidgen of strength. Why not? But I have learned to listen to that nudge. It means its my plan, not His. Tonight was no different. I look to do something. Don't we all? Always looking to fill our time with something. Never just being still.  Thats the thing....I think being busy is a disease. But the good news is there is a cure.  The sad news is, if you don't take it, the alternative may not be curable.

I have felt extremely useless especially in the last 3 months. Lump on the log has never had as much meaning as it has in these months. But I believe these have been months of extreme make over.  When you get off, or are pushed off, the merry-go-round, its amazing what your eyes are open to when the spinning stops. You can look around you and the colors and people around you are no longer blurred.  Its incredible and you wonder how you ever got on the merry-go-round to begin with.  

I was in the cardiologists office because I have had difficulty breathing since mid January and mid February we were told by doctor that she thought we were "slipping in and out of heart failure". So, we saw a cardiologist who orders all these tests. I was a bit frustrated to have to see yet another doctor, go through tests, dread the words "normal" leaving us under a lyme green umbrella with the rain pouring all around us. So, here I am sitting in this office waiting for a chemical stress test. There were 4 clients and 4 professionals. One gentlemen was sitting to my right and I hadn't looked right at him but just heard and seen him through my peripheral and my stereotypes had kicked in based on what he allowed everyone to hear and what my peripherals saw. We got to the end of the tests and it was just he and I in the waiting room and he spoke to me, struggling with what had been injected into us. I looked up and now I saw this man. I shared I was struggling with it as well. We both shared we had done the treadmill in the past and would prefer to do it in the future. He shared he did this every year. Something in me prodded to ask why but I felt it was nosey but I asked him why had a screening each year and he shared that he had a heart attack four years ago...the anniversary of it being the next day.  I was amazed at how this man, older then me, was just talking to me.  Not bragging, not whiny, not complaining, just sharing, as if ...friends maybe. It was incredible. I shared about a man in our church who just found out about his carotic arteries. He then kept talking saying he really didn't understand why he was blessed to still be here today. He paused and then he said maybe did....that it was to help his wife who had died four months ago. At the mention of this I lost all words...not that I had many to begin with. I am not a social girl. I usually end up putting my foot in my mouth. It definitely not a gift.  I said I was sorry to hear that. He said she fought a good fight of cancer.  He said the funny thing was he wouldn't be here if it weren't for her that she is the reason he survived the heart attack. I'm in aw at this moment. The strength in this man's voice. I can't place the words to describe how he talked. At this time the tech came to get me for my final images which I thought was bad timing.....here this man shares his heart with me (ironic...we are there for heart tests) and then I have to get up and go. I laid in the chair with the machine whirring around me just staring up at the ceiling praying for this man. I didn't know his name at the time, and didn't know if he knew God. I didn't even know what to pray so I prayed for help to know what to pray. I still don't know it is about this man but he touched my heart. I walked out trying to contain the overflow filling my eyes and he opened the door of the waiting room for me. I was speechless except for "thank you" and "best wishes".....told you I'm not gifted with words. I walked out and lost it. I did learn his name later and have prayed and cried over this man. I was talking with one of the ladies in the doctors office who said, "there's always someone worse off then you." and it caught me, snapped me, and I replied boldly which is not like me, "its not that someone has it worse off then you but that everyone has something going on and to that person its a big deal. There's not a single person in this world that doesn't have something going, dealing with something."  Why does it always have to be a competition. To say someone else has it worse is to say that what God is doing in your life is nulled, insignificant? What are you then saying about God?

I was sitting in the foyer of the hospital waiting for Chris and the girls to pick me up from that morning from doing this test and I was just watching people. I then remembered a video someone posted on facebook. Its called the Paradigm Shift (http://www.youtube.com/watch?v=JlRK1vqcuvg). This is one of the blessings of a slower life. It has allowed me to have a conversation with a man in the heart doctors office. The old me still on the merry-go-round would probably not have had that conversation. My body language and words would have been such that would not have allowed that man in because my world was spinning out of control...I would have been too busy trying to do too many things to feel important and productive and accomplishing my plan.

I am sick, the sickest I have ever been in my life. I have been kicked off the merry-go-round and I am so glad. I don't want to get back on. I may not be able to do my own laundry or keep my own house or do most of the things the world normally does but I can still pray and I can still listen.  Its all I have time for. 

I got to go to church this morning. I was sitting there during communion, holding the bread. I like to pray during the each piece while its going around. I have never felt what I did today. I've always felt my prayers during communion were my words just filling up that time. Don't get me wrong, they were sincere words but just empty? This morning was filled with life. Again, I wish I could do this justice with words.. but...I found myself thanking God for every drop of oxygen given to me to make it to church and every bit of strength it took to make it to church, and for every ounce of encouragement in every form it came in (music, children, etc) and for the cooperation of my children....all given to me by Him. Then we were given the cup. I'm holding the cup and I am reminded that without Christ's blood that all those things, each breath of oxygen, strength, encouragement, cooperation...all of it wouldn't be available, possible....that would equal nothing but one big pit of despair. I am so thankful that I can at any given second go to my heavenly Father for strength, to cry out, to cling to, to laugh, to cry on, to lean on, for my next breath, for the plan of action, for a friend, for love, for a hug, for anything I need. I don't have to go through anything to get to Him. He is always with me, right here. He may not "kicked me off of the merry-go-round" but I believe He is saving me from myself through it. He is doing an extreme make over through it. Therefore I choose the slow life. I will cherish the slow life. I got the longest snuggle time with my youngest yesterday after nap. It wouldn't have happened without Lyme. I would have been off trying to knock something else off my list.  I like being available to pray for people and listen and snuggle with my family. It hasn't been easy and its not going to be. But I'll take the blessings of the Lyme and the extreme make over and what God is doing with it over Him leaving me to what I was. 

All this and more and then I heard this song and it put it into words for me. This is my hearts and souls cry and song.  The last 3 months have been the roughest but at the same time they have been an eye opener. I think my heart is bigger (maybe thats why its struggling :-)  ) and my eyes are more open (when they aren't asleep :-)  ) and my family continues to grow closer together and I continue to grow closer vertically with my Father. Not all bad, right? Check out this song. Its where I'm at.

http://www.youtube.com/watch?v=yZRg-SEQJSE