Pictures of pain and progress...

I realized that I haven't put any pictures of lab results, etc. on here in awhile. So, I thought that I would show the good, the bad, the ugly of what it is I'm fighting.


Here goes: This is the fluorescent stain of my blood that was done in June showing an entire "biofilm community" in my blood. The other little dots are biofilm, but that big one has all sorts of bugs (as the doc calls them) in there so we went after that biofilm hard!

Now, here is the fluorescent stain of my blood done late November:

This shows smaller biofilm communities and is still considered "substantial biofilm" but is much smaller than what we saw in June. See, progress in pictures!

Now the next photos won't look like progress, but they do actually show progress in a backwards kind of way.

This picture is a special stain of my red blood cells taken in January of 2009:

They look somewhat normal for red blood cells. Red blood cells should be circular or somewhat round without rough edges. The yellow arrow in the picture is pointing to Bartonella that is in or around or attached to a red blood cell. Please understand that the Bartonella is hiding inside the biofilm so well that I am STILL testing negative for it in my blood work - even though we have a picture of it IN my red blood cells. Just goes to show how hard this stuff is to get rid of and to get out of your body.

Here is the same stain done this month:

As you can see the red blood cells don't look as circular. In fact, some are extremely jagged with spikes and all sorts of bad looking stuff. This is what the Babesia is doing to my red blood cells. It attacks them and tears them apart. I've explained how red blood cells carry oxygen all around your body and these torn little pieces aren't doing that. This is what causes the lack of oxygen to my brain and we think is what causes my seizures. What is the good news in all of that? Well, that we broke down enough biofilm to get the Babesia out so we can fight it. Now my tired body that is overwhelmed with Influenza A and Mono just can't take on Babesia very well right now. We have had to slow my treatment down immensely due to the seizures...a.k.a. my "speed bumps".


For now we are going to try just doing IV antibiotics in the morning and then IV fluids in the afternoon to help my body rid itself of the toxins. These torn red blood cells are also what are collecting in my spleen and making it swell a bit. So we want to flush my blood with fluids to get all of this out and hopefully keep my seizures at bay by doing that and adding that sublingual anti-seizure medication.


We'll just keep on praying and God will keep doing His work as He leads me and my doctor in our mutual decisions on what is best for my body. We cannot push right now, but we can plan for what comes next. We can try everything we know to keep the seizures from coming on, I can keep on forcing myself to stay conscious in order to stay out of any ERs or hospitals. When you lose consciousness, you have to go to the ER so they can make sure your respiratory system is working and that your brain is getting enough oxygen to keep everything working. God has yet to fail me - He is with me every step of the way, even when I often think I am making these decisions on my own. I'm not...He's just giving me ideas and I'm slow to recognize and thank Him for all He does.


Basically, these pictures show progress. Slow progress in some areas, painful progress in others, but progress nonetheless. So, the day after Christmas I thought I would share my Christmas gift of God's work in my body - His progress for me physically and His strength for me when I lack my own. He is at work in us everyday people, we just have to choose whether we listen to Him or tune Him out. I've been known to do both very well - really, haven't we all? I am trying to force myself to listen to that small quiet voice before He has to really YELL to get my attention. All I can say is that I am thankful for His grace, love, and forgiveness for all the times He has to YELL before I listen. You'd think I'd hear His whispers now that I'm so sound sensitive :)

Closing with a few really good quotes from some Christian authors and then of course, a couple of Bible verses that are on me right now:


"God walks with us...He scoops us up in His arms or simply sits with us in silent strength until we cannot avoid the awesome recognition that yes, even now, He is here." Gloria Gaither


"Regardless of the need, God comforts. He is the God of all comfort! That's His specialty." Charles R. Swindoll


"Trials have no value or intrinsic meaning in themselves. It's the way we respond to those trials that makes all the difference." Joni Eareckson Tada


"The Lord is near to the brokenhearted and saves those who are crushed in spirit." Psalm 34:18


"Wealth and honor come from you; you are the ruler of all things. In your hands are strength and power to exalt and to give strength to all. Now, our God, we give you thanks, and praise your glorious name." 1 Chronicles 29:112-13


Hope you all have a wonderful week and a blessed New Year!!!

Love-
K

Dreaming of a white Christmas and home...

A few positive things about spending Christmas away so far from home: 1) The new perspective you get about the true meaning of Christmas. I got to focus a little more on being forever grateful that God sent His son here to save us all from our sins. 2) I learned that Christmas presents are nice, but being with family and friends is the tradition I love a lot more than gifts. I love buying presents for the people I love, but I am thankful God has given me people who love me much more than any gift I could ever buy them. 3) And finally, the fact that I love my husband more and more with each passing year and the ways he shows me his love are much more important than a nice Christmas gift. It’s the day to day things he does, the way he takes care of me, that make me realize material gifts are never an indication of how much someone loves you.

Now, don’t get me wrong, I love presents as much as the next person, but this year I saw past the gifts to the most important part of Christmas – LOVE. First and foremost, God’s overwhelming love for us that resulted in His sending His son down to earth to endure so much to save us all from our sins. Then, God blessed us all with family, friends, or friends who feel like family who love us and stand by us no matter what we go through. God has blessed me with so much that I often feel like a spoiled child when I complain to Him about how I want to be healthy. I know many healthy people who are not as blessed as I feel every day. Of course I want to be healthy – it’s why I’m here. However, through all of this I have gone through a range of emotions – frustration, anger, excitement over the smallest of improvements, disappointment about lack of progress – the list goes on and on. The longer I am here, the more God works in my heart, and eventually my hard head gets the message. I am blessed with His love. His love that is greater than all the seizures, surgeries, sicknesses, and setbacks. He is with me through all of this, even when I don’t act like I should or say the things I should – His love is forgiving and perfect. I am so glad to know that I don’t have to be perfect to receive that truly amazing grace.

Now, I know I have written quite a few verses on Philippians on here somewhere (or at least my “Lyme brain” thinks I have) but I want to write a few that I may have written previously because God is hitting me over the head with these verse this morning and making me see them in a new light:

“Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable -- if anything is excellent or praiseworthy -- think about such things.” Philippians 4:4-8

Now I’ve read these verses so many times, as have many of you, I’m sure. However, today as I wrote the beginning section of this entry I realized God was doing so many of these things in my heart today. I will list them below in the order they occurred to me:

1) “Rejoice in the Lord always” – I started this by stating that I am so grateful for God’s love and grace so I am REJOICING in the Lord!!! Even 1,200 miles away from my “Christmas traditions” I am remembering that Christmas is ALL about REJOICING IN THE LORD!!!
2) “...with thanksgiving present your requests to God” – the next thing I wrote about was my thankfulness for my family, friends, my loving husband and how “things” pale in comparison to those things which cannot be bought – like love and friendship. So, I am THANKFUL and I present my requests to God knowing that while I may not have good health – I have a good life of love and laughter.
3) “Let your gentleness be evident to all.” – I have been having to think about many things lately: A) Changing my treatment protocol B) What I can do to ward off these seizures that seem to have no clear “triggers” C) How I should go about discussing changes like this with my doctor. In thinking on all of this for weeks I have often thought, “Should I be putting my foot down and demanding change or should I be the ‘good patient’ that I have been for the past 6 months?” I had been going to just quote Philippians 6-8 but as soon as I opened my Bible God laid it on my heart to include verses 4 and 5 and now I know why. Our actions, each and every one of them, are used to determine what kind of person we truly are. As a Christian, I think it’s counter-productive to stomp my feet and demand things to be done in a certain way. I know some of you are thinking, “This is your health, K, so start STOMPING YOUR FEET! Demand things of your doctor!” Hang on and I will address what God is telling me about that as well.
4) “The Lord is near.” – yet another part of this group of verses I had not planned on including. It comes directly after “Let your gentleness be evident to all.” and I think there’s a reason for that. I think it is a way of saying, “There’s no need for you to be stern, forceful, demanding because THE LORD, YOUR GOD, IS NEAR!”
5) “Do not be anxious about anything, but in prayer and petition, with thanksgiving, present your requests to God.” So, I’ve been worrying about all these issues with my health, how should I handle them, what should I do? The answer is right there – do NOT be anxious. That’s first. That comes from having faith and knowing that God’s sovereign plan has these things covered. Second you are to pray WITH THANKSGIVING – again, the first thing I did as I began this was to list all I have to be thankful for, all I have to thank God for every day. My life is far from perfect, but no one’s life is perfect and I should not expect perfection on this side of Heaven. I’ve learned if I state my “list of things to be thankful for” at the beginning of my prayer, my anxiety goes away before I can even get to my “petitions” or requests. It allows me to see what all God has already done for me, how many times He has already gone before me solving problems I never even recognized BEFORE I knew they were problems. Basically, this says, “Count your blessings first and then hand over those troubles to God, every single one of them.” Don’t just say you are giving them over to God, don’t just hand over your “big worries” and think you can handle the small ones on your own, or vice versa. I’ve said many times that I’ve handed a problem over to God and then found myself later worrying over the very things I “said” I was giving to God to take care of. When we really hand our troubles over to God we need not worry about them again. Again, “The Lord is near” so He knows your worries, your fears, your weaknesses. Doesn’t matter if you hand them over or not, He still knows every one of them. So why not just give them over to Him and thank Him for all He has done for you and all that you know He will do for you in the future?
6) “And the peace of God which transcends ALL understanding, will guard your hearts and your minds in Christ Jesus” (emphasis on ALL is my own doing) – I sometimes wonder about God’s level of patience with us human beings. Because so many times the Bible uses different stories, different accounts of the same story, parables, etc. to get the SAME message to us over and over again. I’m stubborn, I’m hard-headed, I think I am right most of them time, but honestly, how many times does it take for me to understand and trust that God will take care of me in every way? He has done nothing but show me that even in the worst of times He is with me, He holds my right hand, He counts my every tear, He feels my pain, so why do I continue to try and tackle things without going to him “by prayer and petition, with thanksgiving”??? Because I’m human and He’s God and I am very thankful His forgiveness is so much more than we can comprehend. We cannot even understand a fraction of that type of forgiveness because as humans we are incapable of it. It’s that simple. So, be thankful that once you confess your sins, once you have humbled yourself before God and asked Him for forgiveness, He gives it to you immediately.
7) “Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable – if anything is excellent or praiseworthy – think about such things.” So here we have it again. God wants us to rejoice in Him. He wants us to allow everyone to see our gentleness. He wants us to know He is near. He does not want us to be anxious, but rather He wants us to come to Him with a heart of thanks and hand over our troubles to Him. After we do that He will grant us the peace He has and will guard our hearts and minds in Christ Jesus. Then, because we humans don’t listen well or pay attention to much of anything for long, He drives the point home by making it as simple as telling us to “THINK ABOUT THINGS THAT ARE TRUE, NOBLE, RIGHT, PURE, LOVELY, ADMIRABLE, EXCELLENT, AND PRAISEWORTHY”. Do you see what I see here? How on earth can we worry or be anxious if our minds are concentrated on GOOD THINGS??? How can we not allow our gentleness to be evident to all if we always concentrate our thoughts on GOOD THINGS? How can we not be thankful to God for all He has done, instead of always finding things we think He “should have done”, if we are always focused on true, noble, right, pure, lovely, admirable, excellent and praiseworthy things???

That’s my take on it. That’s what God laid on my heart to write. It was not anything I intended to write. It wasn’t even close to what I intended to write. It was not even on my radar, so to speak. But, I prayed when I started this blog that God would lead me in everything I wrote on here, that He would use me in some way to bring His glory, love and peace to anyone who might read this. It came through my hands though so forgive any misspellings, typing errors, etc. I do my best but sometimes my hands can’t keep up with the thoughts God places on my heart.

Now, here’s the health update. M was able to be at the doctor appointment we had on Sunday afternoon. He is the husband, he is the provider, he feels the need to protect me, love me and take care of me, and he is a true man. I mean that in the best possible way, but men often want to just “get down to brass tacks” so to speak. He wants to know the “big picture” idea. What do we do now to get the seizures under control (I’ve had 2 more since my last post)? He needs to know this because we cannot push my body any further with the medications without getting the seizures under control. These seizures are fairly big speed bumps on my road to getting home. Finally, he asked that question that I have not wanted to ask – the one about WHEN the doc thinks I will be able to get on oral meds and come home? It’s not that I didn’t want to know when I could come home, it’s that I know after a couple of decades of declining health, that there is no way to tell how my body will respond to the different treatments, medications, etc. Also, there’s the biofilm issue, meaning every time we open more biofilm we have no idea what will be released into my body. I guess sometimes opening biofilm is akin to opening Pandora’s box with possibilities of new illnesses coming out that we haven’t thought of or that I have been tested for and gotten negative results. The answer was what I told M it would be – just a guesstimate. The doc's “guesstimate” is 6-9 more months and it was said that “every cell in her body is diseased”. And the guesstimate is based on if my body finally stops fighting against me and starts fighting WITH me. In the past 6 months my body has shown no signs of wanting to cooperate with us in our quest for health. I almost feel like my immune system is mugging me at gun point every day – stealing all I have, beating me up, and leaving me for dead. Don’t know where that analogy came from, but it seems fairly accurate since the seizures do beat me up quite a bit and my body is so very tired.

Bright side, yes there is some good news, the latest biofilm stain showed smaller biofilm communities so the blood work confirms what we knew was happening – we are breaking down that biofilm and getting these infections (bacterial and viral) to come to the surface where the drugs can knock them out. We are making progress. One of my treatment friends, Stef, recently reminded me that “slow and steady wins the race” and she is right in this case. I cannot push my body harder, I cannot fight any harder than I already am, but it is nice to see a picture of some progress. The other picture we looked at was a stain of my red blood cells. The first one I had done was last January and it showed Bartonella attached to blood cells but nothing in the blood cells. The doc says that’s because the blood cells were hiding in biofilm we couldn’t see. For those non-medical folks, your red blood cells should be round, circular, whatever and have smooth round edges. Most of mine looked that way last time. This time however, they were spiky, misshapen, stacked onto one another – basically it looked as if someone had taken a chainsaw to them and split them apart haphazardly. The doc says this is due to the Babesia (the horrid illness behind my seizures) and it shows exactly what we thought it would show – damage to the red blood cells. Red blood cells carry oxygen to the brain – and everywhere else in the body – and the Babesia is attacking my red blood cells and tearing them apart. This causes a few problems, as one would expect. First, the lack of oxygen to the brain leads to the seizures. Second is that killing the Babesia leads to toxins in the blood that cause me to have extreme headaches and I think they also cause my extreme noise and light sensitivity. I literally wear sunglasses the bathroom due to the bright lights and I hurry out as soon as I flush the toilet and quickly shut the door because the simple sound of the toilet flushing kills my ears. I cover my ears a lot these days and feel that I look like a little kid who doesn’t want to hear the word “no”! Finally, the red blood cells that die off have to go through the spleen and I’m overloaded with them so my spleen is swollen and hurts. Not a bad pain, but I do compare most pain to kidney stones, so who knows what “bad” is. My bad pain could be someone else’s “good” or it could be someone else’s “horrible”. It’s all subjective. Main point is that there isn’t much we can do for it beside keep me off my feet (okay I’m laughing as I type this because those of you who know me know I haven’t been ON my feet for quite a few years – haha).

We did try to move me to a “private treatment room” to cut down on noise, but unfortunately most patients in the private rooms are in there because they have to be in a bed, or in a wheelchair, or have more extreme physical problems than me. At least, that’s what I’m assuming because both times I tried treatment in there it was louder than where I was previously. It was a bad idea to try it. I knew that, but M thought it would force me to rest some more than I do when I get to chat with my treatment friends and the doc has been suggesting it for a few months. Needless to say, I will not be in there again. The very first time in there I had a grand mal seizure that started around 5:25 and we were able to leave around 6:15 – but my sweet nurses stayed late with me, bless their hearts! We had adjusted my seizure meds since I don’t do well with pills due to absorption issues. So, we got it in a sublingual form (just means it melts between your cheek and gum) which is the fastest way to get it into your blood stream outside of injecting it into your IV. Even though the medication melted as I walked into treatment around 3:10 it wasn’t enough to keep me from seizing. I’ve found that change in my environment is very hard on me as well. Sounds odd, but the days that mom leaves and M comes in are hard on me because it is a change. When we had another girl put in my treatment room, she knew I had seizures and was being so quiet as to not set them off, but I still seized. Not her fault at all, but I think it was just the change that caused it. Change apparently equals stress and stress seems to equal seizures. We’ll continue to work on it and I will continue to fight every day with the strength that God gives me as I pray to Him for wisdom, fortitude, a loving attitude, sympathy for others who are fighting these diseases as I am, but who have different symptoms, pain, exhaustion, heart trouble, etc. I also pray that this blog gets out a message of God’s everlasting love and that it allows people to know about a disease that no one seems to know about and that several doctors refuse to believe in.

I’m blessed to be here. I hate being away from home, but God led me here and here I will stay until He leads me on back to Birmingham or anywhere else He feels I should be. Thanks again for reading a short story. It’s hard to write these. I’m not supposed to be on the computer, but it’s Christmas and I wanted to post what God put on my heart to post. I just wish He would edit it for me too…heehee. Merry Christmas my dear friends!

“She will give birth to a son, and you are to give him the name Jesus, because he will save his people from their sins.” Matthew 1:21

Much love to you all!
K

Aches of a different kind...

I had a rough week, but I’ll tell you all about that later. Right now I want to tell you about aches of a different kind. Most people think that when you come to a clinic like this, when you are doing IV treatments twice a day, when you feel so bad, that it would only be natural to want to go home as soon as possible. At first, you do. You start to count down days, or how many IV bags you have gone through, but then there is the realization that you are sick enough to need IV treatment. There is also the routine of coming twice every day and being surrounded by nurses who care for you, by people who become not just friends, but “war buddies” because you are fighting together. When you have to be here for awhile, the idea of going home can be very scary. You start to wonder, “What if I start to feel as bad as I did before treatment?” That thought is even stronger for those who came here from many states away. The idea of not being able to have that kind of routine and having to take our medicine orally instead of intravenously is a scary one. The fact that when we leave here most all of us are still going to be on oral medication and the side effects from that are often just as bad as the side effects of the IV treatments. If you are really sick and have been in the clinic a long time, you have the worry of being “on the outside” because at the clinic no one looks at you funny for wearing sunglasses indoors, or even at night for that matter. No one in the clinic thinks twice about those of us who wear headphones or earplugs, or both, because of our intense sound sensitivity. A phrase me and some of my IV friends use is, “We have found our people” and it’s true. Not just because we finally found a doctor who could figure out what was wrong with us, or the sweet nurses who understand our symptoms, but “our people” are really our fellow patients.

In the next two weeks I will have an ache of a different kind as two more of “my people” will be leaving IV treatment. I am so happy for them, but I understand also the fears that I listed above. I want to talk about these people and ask that you pray specifically for them as they journey into a world where most people have no idea about Lyme Disease or it’s many co-infections, like Bartonella, Babesia, etc. It’s a wonderful thing to know that they have gotten healthy enough to not need IV treatment, but that’s not really the same kind of “healthy” the outside world thinks of. It’s healthy enough to be able to continue treatment at home on oral medications. So I want to write first about these two people so that you might feel that you know them as you pray for them specifically on their road to “wellness”.

First I want to tell you about Julia because she was in my treatment room for the first 5 months or so that I was here. She has been here for a very long time and finally had to be moved into a private treatment room due to her sound and light sensitivities. They cause her to have horrible headaches and even the slightest noise – ones that some of you might not even notice or hear – will sound like the noise of a construction site to her ears. She is a beautiful girl and on the days when she has enough energy, which unfortunately don’t come around as often as she’d like, she will put on makeup and you wouldn’t believe how talented she is with makeup! She is beautiful without it, but I love to see when she has had a “feel good enough day” to put it on because she could honestly be a makeup artist right now without training! She is going home finally, but I want you all to pray that God gives her peace about leaving her “safe place” here at the clinic. She is a Christian and she knows God, but she has been through so much health wise that sometimes I think it may be hard for her to trust in the fact that God has great plans for her life. She is almost 20 and I know a lot of people that age have difficulty trusting or understanding what God may have in store for them. However, with all she has been through I pray, and I ask you all to pray, that she feels God’s love and protection around her as she goes home. I pray that she finds out what God has called her to do in her life, what He has prepared her for. She is special, she is talented, and unfortunately she had to spend a lot of time just being sick, which means that being special and talented had to take a back seat to just being sick. Pray that she will see how strong she really is. It takes a lot of mental strength to be here so long and it definitely takes strength to have suffered for so long. The Bible says “…we rejoice sufferings because we know that suffering produces perseverance, perseverance, character, and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.” (Romans 5:3-5). Personally, I trust that God has a lot in store for Julia. I hope we all (you readers included) learn from all our sufferings, whether they are health related or come in some other form. I will have an ache when Julia leaves, because I have prayed for her many times and have been able to see her change and grow, becoming her own person. I pray she continues to see all she has to offer the world as she grows and that she will feel God leading her in her every step. She is capable of doing so many wonderful things. She hasn’t even realized many of her God given talents yet, but I have faith that she will. She will go out into the world and her family and friends will support her as she continues to strive for a “healthy life”. Julia, I will miss your laughing with us when you were having a good day. I know your family will be happy to hear that laugh when you are finally home with them.

The other ache I will have is when Ray will leave right before Christmas. In my estimation, Ray is the guy who will always beat the odds, mainly because he would never recognize if any were stacked against him! He was on oral treatment for 2 and a half years before coming here. However, he did this while not only attending college, but being active in his fraternity, being Student Body President, and having a wonderful girlfriend! They just celebrated their 4 year anniversary and I know how special she is because she has been standing by him through this battle the entire time. Ray didn’t have to go through IV treatment long. He graduated college (on time…see how I think he beats the odds?) and decided to go through the IV treatment to get as healthy as possible before trying to head out into the “real world” and find a job. Even though he had those years of oral treatment, he had some really tough days on IVs but he pushed through and continued having such a positive attitude. He brings a light with him everywhere he goes, and I'm thankful for him bringing that light into our room with his quick wit and infectious good humor. Ray didn’t have to stay here as long as Julia, but he has endured a lot on his quest for good health. I pray that Ray goes out into this world and recieves all the wonderful things that God has in store for him. Unfortunately, he is going out in "the real world" during a bad economy when jobs are hard to find. I don't think this will stop him though because I have a hard time thinking that some prospective employer couldn’t be swayed to hire a guy like Ray. I honestly don’t think there’s ever been someone who met Ray and didn’t like him. If so, they must have not been around him long enough! Pray for his health to continue to improve as he leaves IVs and “his people” and goes out to live the life God has planned out for him. Ray, I know I will miss hearing you say “Yahtzee” any time your chair broke, or your computer cord got in the way of your IV pole. I still anticipate a CD dance mix for me to use when I have a seizure. See, this is a guy who understands that without music seizures just look weird, isn’t that right Ray?

I wrote so much about these two people because they are both so very special to me. Both of them have had to see me go through seizures and they both sat and prayed for me while I did my “break-dance moves”. They have seen me have some of my worst days and wanted to try and help, but it’s hard to help me when I seize because my dance moves often involve kicking and flailing my arms about. In those times it’s best to leave it to the nurses and just sit and pray – which they did. These are people who have hugged me at times when I just needed to know someone cared.

The last person I want to write about is my friend, S, and I know she won’t care if I write her full name, Suzanne. I wrote about when she left last month, I wrote about what a wonderful friend she had been, what a talented artist she is, about how she somehow made going to treatment fun – which is a quite a feat. What I didn’t do was to ask that you all pray for her as I have asked that you pray for Ray and Julia. Suzanne is at home now taking some very strong oral antibiotics that have side effects most people couldn’t tolerate. Suzanne is a trooper and in her 8 months of IV treatments, she never missed one treatment session. I guess I didn’t think to ask you all to pray for her because Suzanne has such a strong attitude and presence. However, I think Suzanne, like most of us, fails to see all of her wonderful qualities. So I pray that she will start to see herself, not just as I see her, but as God sees her. I personally think He would see her a lot like I do: extremely generous, eager to help anyone, brilliant, talented, and having suffered much, as many Lyme patients do. I believe he will use the suffering, the generosity, the brilliant artistic mind and He will lead her to do great things. Suzanne, I would say how much I miss you already, but you never read my blog because you’ve heard me talk too much already, haha! If you do read this, know that treatments just aren’t the same without you.

As for my own health update, I had another seizure on Monday and it was a bad one. I made the decision to only do afternoon treatment sessions for awhile. My reasons were 1) the seizure caused me to hit my fanny pretty hard on the tile floor which produced a couple of large knots (but no worries, we got the x-rays done on Friday and are waiting to hear that my fanny didn’t suffer any permanent damage), 2) A really sore fanny doesn’t go well with sitting in my IV chair for 2+ hours twice a day, and 3) my body is really tired from all the seizures and I thought perhaps twice daily treatment is pushing my body further than it can go at this time. Some people around the clinic may believe that my break from morning treatments is due to the fact that it actually got down to 1 degree on Wednesday morning with a wind chill of 16 degrees below zero and that this Alabama girl can’t handle such cold. I know I can handle cold – I skied at Lake Tahoe years ago during a New Year’s vacation, I’ve been to Colorado when the snow fell as early as October 1st. So, it’s not that I can’t handle cold. I’ll admit I don’t like it, but to those people who think I can’t handle it, I would say come to Alabama and realize that you don’t have to live in such cold conditions! Hahaha.

I wrote all of the above before afternoon treatment and unfortunately we had to leave the house early because I felt a seizure coming on. God was once again with me because you all know how I've never wanted mom or M to see me in full seizure mode. On Sunday afternoons the nurses usually don’t arrive until right at 3:00 and the clinic is closed until that time since patients don't arrive until 3:15 at the earliest. However, we got there right at 2:48 and God made sure the door was open and that two of my sweet nurses were there, both of whom have been with me during previous seizures. I got a shot of Valium right before 3:00 and by 3:30 I was able to be taken to my seizure cot via a nice wheelchair ride. The nurses were in the other treatment room of the clinic and luckily I was able to have my seizure in an empty IV chair that leaned back so I don’t think I sustained as many bruises. I was still seizing some when I got on my cot, though not as violently by any means. It was a better seizure than most, but unfortunately during the last two seizures I haven’t been able to control my bladder muscles and have had to endure wetting my pants a little. Luckily the first time I was wearing jeans with cotton leggings underneath (told you it’s been cold here) and this kept me from having the embarrassing “pee-pee mark” on my jeans. Today I was wearing just black leggings and you couldn't really see the evidence of my “accident”.

M is coming in on Thursday and we meet with my IV doc on Sunday, the 20th. Please pray that God will speak through us and that He will give the doctor the ears to hear our concerns about my treatment. As a husband, M is so supportive and when his wife has to suffer through so many seizures, well, he is a man who wants some answers. He wants to know what the doctor can do to keep me from going through these dangerous episodes. I'm now on 2 "anti-seizure drugs" as well as my Ativan and Valium which are in the benzodiazepam family of drugs and are often used to control seizures as well. I'm on a muscle relaxer as well, and yet I still seize. I will go into more detail about all of this after we meet with the doctor because for now, we aren't sure what is triggering these seizures, although we believe we might know why I'm having them. Good news is that M will be able to stay with me through Christmas. Unfortunately he will have to be home for business reasons the last few days of ’09 so there will be no New Year’s kiss this year. I’m not happy about it, but then I realized that last year I had to wake him up to get my first kiss of the New Year…ha!

Thanks for reading another one of my short stories – I can’t call these entries really when they reach this length! I hope you will pray for Julia, Ray and Suzanne, and as always pray for the other patients still going through IV treatment. I know you are all praying for me because God allows me to feel those prayers every day. I appreciate all of your support and am amazed by people who send me cards many of them are people I haven’t even met – like my in-laws friends at church and other Lyme patients whom I’ve only met through this blog or through people who have been through IV treatment here. Even family members on my dad’s side that live far away and whom I haven’t seen in years have sent such sweet cards letting me know they are praying for me. I’m still just amazed that so many people even read my blog. I pray that I write what God wants to say and that this is more than just a “health update blog” because I feel that God’s always meant for more to come from this than just a mere journal of my time here. I send much love to you all. OH – I forgot to say I got rid of the Coxsackie virus – YAY ME!!! However, the flu and mono are still being pretty stubborn and are probably co-contributors to my seizures. My own personal prayer request is that these seizures will stop so that I don’t have to “break-dance” or do “extreme cardio Pilates” anymore. Like I said, this body is tired. Pray that God gives my IV doctor and my neurologist the knowledge needed to help me fight my own battles as I travel down this difficult road to better health.

I pray that God bestows His love and blessings on each and every one of you!