Tuesday, February 16, 2010

Trent and I returned from North Carolina two weeks ago Monday night. It was a whirlwind trip, but God's fingerprints were all over the trip. I made the long trip up and back, (that in itself was fantastic!) and was even able to sleep well in a bed that worked! (Can't tell you what an answer to prayer those two things were!)

Anyway...the Dr. was very knowledgeable in chronic Lyme disease and seemed to answer most questions before we even had a chance to answer them. We spent almost 10 hours with her. Since we have been home, we have been trying to get everything situated and worked out. The details of all the meds., bloodwork, treatment plans, etc. I will be starting a whole new treatment. The one I was on only addressed a portion of the actual treatment needed. Long story....bottom line... as I go on this new one, things will get worse before I get better. I have had "game face" days. Those are the days I am determined to get through whatever...bring it on! ... but I have also had days where I am scared to death. I know the risks and what is to come, and there are moments I wonder if it is worth it. ( That's usually about the time that God sends in His special forces (one of my kids) and I am reminded that I don't have the luxury for those kinds of thoughts.)

Right now I am still waiting on Dr. input to decide which path I will take....oral treatment or IV/oral. Both will work...IV is the one I am trying to go for, it is a faster treatment and is better on my GI tract, ....there are more risks involved though and I do need a Florida Dr. to sign off.

As I continually process through all of my thoughts and emotions about this deal...I continually come back to this ( a thought from Walter Wangerin Jr.)...

"I beg God that I might do this thing with grace and gracefully, no matter its length or its ending."
And these two great verses:

I corinthians 9:26 " So I run with purpose in every step."

Hebrews 12:1-2 "Therefore, since we are surrounded by such a cloud of witnesses to the life of faith, let us strip off every weight that so easily hinders our progress. And let us run with endurance the race that God has set before us. We do this by keeping our eyes on Jesus, on whom our faith depends from start to finish."

Thursday, February 4, 2010

Cycling symptoms

I have had several people ask me what kind of symtpoms I have been having, so I thought I would let you know what "a day in the life "might look like for me lately....although I have to admit, it can change anytime:)

Yesterday I dropped Sydney off to get her hair done when I walked in to pick her up, the smells of the hair salon were so overwhelming. My symptoms instantly seemed to maximize. I felt like my head was put back into the vice grip from ear to ear along the backside. My neck was so stiff I could barely turn my head. My muscles began to twitch and then went into their crippling twisting, especially throughout my hips. My arms began to burn and my face went numb. By the time I got out I could barely think. I was overly sensitive to lights and the noise around me. I am overly sensitive to chemicals, even if i am just smelling them, and any kind of meds. I haven't had as much of a problem with them in awhile, after coming off of treatment, it seems like I am hit by a mac truck when I encounter them.
I had a hard time keeping my head up, usually after that happens, it's like a weight is put on the back of my neck and I can't pick it up. My all over pain intensified for the rest of the evening. by the time i went to bed i was having difficulty breathing...like a belt was wrapped too tightly around my rib cage. I began to have the "inside" shakes...that's when I feel like I look like Catherine Hepburn, but I'm not really exhibiting it physically. (All during that scenario, I was trying to cook dinner and have some time drawing with my kids.) Sometimes in a couple of hours those symptoms might change to something else or even relax somewhat, but after the chemical exposure, it usually intensifies for days to a week and then begins to subside. So last night I had a hard time making it up the stairs. I sat on my knees for about a half hour to try to disperse some of the hip pain. That seemed to help, otherwise, getting into bed is tough. After lying down, the pain shifts around, so that usually lasts for a good couple of hours. Last night I went into intense pain in my hips and back that made my heart rate go up and start racing and skipping beats again. I had difficulty breathing throughout the night. It might start out as the belt buckle scenario and then just turn into being very difficul to get a deep breath, like your rib cage has no expansion capabilities. I had a lot of stomach discomfort also throughout the night. I wish I could say that I tossed and turned, but I am not capable of doing that. I can only lie on one side with my knees bent half way up. If I am lucky, I will be able to straighten them out while still lying on that side in the middle of the night and then bend then back up. On my best nights, i can turn over..very slowly and intentionally. by that I mean I have to physcially manhandle my hips with my hands and pick them up to move them and try to flip myself over to the other side. I usually can only last 15 or twenty min. or so, because it cause my heart to do some funny things. I am so thankful that Trent is a great sleeper! He sleeps through it all! so last night was a onesider no movement kind of night. About 3:00am I woke up with night sweats and my body physically shaking. That lasted about an hour and half. Sometimes I use that time to pray or listen to podcasts. By the time the shaking stops, I have insomnia, so .....I keep on praying or listening to podcasts. If they are really good, I usually end up falling asleep!;) I think I fell asleep at 5:30. Woke up at 7:00 feeling like I was going to throw up from being so dizzy. The room would not stop spinning, and I had only opened my eyes to look at the clock once. My neck went into "paralyze"mode...I feel like I am locked up and can't move, even if I try. Trent let me sleep in and he took the kids to school. (He is so great!..I am so thankful for His support and encouragment!) By 9:00 I was able to get up. My heels were in total pain, very stiff hard to walk, as well as my hip muscles. I ended up kneeling down and asking God to give me enough strength and abiltity to get in the shower and get downstairs,....(I had a meeting scheduled at 2 :) to please keep me close to Him and not give in to discouragement today. As always,....He has seen me through. I made it downstairs, (having had a shower!..yea!)and was able to clean up some rooms and get some paperwork finished for epic ...my brain has had a hard time functioning today. Very foggy...I observe, but cannot process very well. Names and ideas are hard to come by. Headache is very dull feeling and I feel exhausted and run down. Eyes can't focus too well. Harder time getting around today. Chest feels very tight and heavy. Neck continues to remain very stiff and painful.
Was able to pick up Koty from school....so thankful for the moments I get to do that and I love to hear him say..."Mom, I love to hold your hand!" As he walks with me to the car. Those are the moments that keep me going!
I have leftovers from last night....always a good thing! ;) If I can think through all that goes into packing, etc for me and Trent to go to North Carlina and then the kids schedules here to leave for mom, I will be good. It will happen....it usually is just at a much slower pace. So here you go...that about sums it up.
Thinking about this today...Jesus said in John 15:9..."Remain in my love"....remaining is a choice...I can choose to leave (reject or not believe) God's love or choose to remain in (to trust or believe in) God's love for me and submit my will to His. .... so today...even though I might not "feel" like remaining there....I am choosing to .....and I know He will meet me there.

Monday, February 1, 2010


Seems like it has been a long winter season in more ways than one. Trent and I are getting ready to travel to see a doctor in North Carolina. I have been praying for God's leading on this one for awhile now, and although we had a couple of different possibilities...God seemed to confirm this track. So this weekend we will be setting off for a new adventure.
I have been a little restless and a little nervous. It's always hard for me to start all over again with a new Dr.. I wonder if it will be worth the effort, will they listen, will they be kind, considerate, compassionate? Will they respect me and my family and all that we have been through?...Can I continue to face my fears? Will this be a waste of our time, money and effort? Will it even work? Is it going to cause me to go backwards or through more pain than I can handle? So many questions that seem to cycle around again and again.
But, God continues to remind me that He is with me. No matter the road I am on, or the journey that lay before me, my responsibility is to keep my eyes on Him. To learn to walk at His pace, not mine. He continues to give me enough strength for each day. Though so many times I try to "store up" enough strength and wisdom for the next month....God gently reminds me...Tammy, that's not how it works. I know you better than you will ever know yourself. Trust Me. I created you and I know that you need me everyday....I am the only one who is sufficient for your need. (nothing or no one else....not even yourself can do it.)
So here I am again today...".casting all of my care onto Him , because He cares for me!" and choosing to give my "load" to Him to carry....my thoughts, questions, concerns, burdens, and trusting that He will be the God that He said He would be...and that He has proven to be throughout this entire journey.