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!

It's not short, but it's about giving thanks and Christmas wishes...

I have had a better break this time than the others. I think it’s because I had 4 days of just IV fluids instead of antibiotics before the break. Also, this break I did Heparin (blood thinner) injections instead of these gel like cubes of Heparin that you stick between your cheek and gum to melt. Heparin can only be properly absorbed subcutaneously (i.e. injected right under the skin or melted in your mouth). Anyway, with all the seizures I have had I wanted to make sure that the medication that helps get oxygen to my brain was going to be absorbed properly into my body! Even if it meant three shots a day in my thighs!

M came on Tuesday and I had my last treatment Wednesday morning before everyone headed off for their Thanksgiving festivities. Some families at the clinic are like me and cannot go home, or home is too far away which means an expensive plane ride. Many of them live in the same apartment complex and they got together and made a Thanksgiving meal and served it in the apartment clubhouse. However, I was still a little worried that all the people, lights and sound would send me into a seizure. Good thing for M is that Whole Foods had a pre-roasted turkey, dressing and veggies he could bring home. He had to put the turkey in the oven for 2 hours on Thanksgiving day, but he was able to have his Thanksgiving feast – gravy included!

As the days have gone by I have noticed a marked difference in my light and sound sensitivity. I am not walking around with ear plugs and headphones on and I actually have TWO lights on in my room right now. I can handle the computer light much better as well. As happy as I am about that, I am also sad because tomorrow I will start the IV antibiotics again and Tuesday we are going to try the Mepron again at a smaller dose and I’ll take it every 5 days instead of 4. I pray this means my seizures will not reappear, but I’m not going to focus on that part. I’m trying hard to leave that all up to God.

I have been here almost 6 months (December 16th will be exactly 6 months) and I was hoping for much more progress than I have had. Of course, with the emergency surgery, digestive and malabsorption issues, and the fact that I am battling some viruses that have been in my system close to 30 years, I guess I should not have been expecting much. My doctor came to talk to me Wednesday morning and is hoping that all the tests the neurologist is doing will let us know if my seizures are a side effect from the Babesia or if something more is going on. My personal wish is that whatever is causing the seizures is fixable, be it lowering the medication to fight the Babesia or if something shows up on my MRI, EEG, or sleep study. However, I know that God will see me through whatever heads my way.

Honestly, I think I’ve been a little mad about all of this lately. I haven’t seemed to have my “bright side” locator turned on. When I saw my doctor Wednesday she was coming to tell me that the reason we have yet to be able to really work on getting my immune system in order is due to the fact that we haven’t been able to get rid of the viruses that I have. After 6 months I still have active mono, active Influenza A, and Influenza B has come back. Basically, I have been breaking down biofilm, which is GOOD, but all that’s happening is that I am setting more things loose on my already overloaded immune system. Until we can get rid of the viruses, the larger battles – like the Bartonella and Lyme – have to wait a bit. Although I say I have felt better on this break, that is a relative term. My better is basically being able to handle the sound of a door shutting, or light coming through the window, and having the strength to walk into the living room. It’s hard to understand that kind of “better” but it’s like when I was at home having my “good days” and “bad days” except for the fact that now I have the Heparin which allows me to speak without stuttering, to think clearer, and for my heart to not have to work as hard. So, 6 months in and I still am battling the flu and mono. We have a new plan of attack for the flu and we’re hoping that mono will leave once the flu does. I’ve found mono to be very “opportunistic” in the fact that it always “goes active” when I have another active virus. We’ll see what happens when we attack the flu with our new plan.

Now, to giving thanks – I’ve got some bad things going on in my life but I have MUCH more to be thankful for and it took me a few “poor, pitiful me” days to be able to recognize that fact. I have a wonderful husband who has been so good to adapt at helping to flush my PICC line with saline “flushes” and getting my PICC line wrapped up nicely. He has adapted to watching (and sometimes reminding me) to inject my Heparin and has been there for me when I felt faint because I forgot to inject the Heparin hours before as I should have. He brings me my meals in the bed and does everything he possibly can to make his time here enjoyable and productive (going to the store, getting my car washed, etc.). God answered my prayer for a wonderful, Christian man to be my husband who would love me despite my many short-comings – both physical AND mental – hahaha. Honestly, in that area I don’t think I could have found someone more patient and more loving than my sweet M. He also has an excellent sarcastic sense of humor that cuts through my “poor me” stages fairly well by making me laugh at him, or the dog, or mainly helping me find humor in the things that don’t seem very funny at first. So thank you God for NOT answering some of my previous prayers regarding different relationships when I was younger because You knew the exact man I would need to spend my life with. Your plans are always the right ones but we often get impatient and try to work things out on our own and often end up with disastrous results!

I also have a wonderful family who has been so very supportive throughout this process. A mother who comes and spends weeks on end taking care of me and letting me know that she will “always be my mother” no matter how old I get! My father who worries from 1,200 miles away because someone has to stay behind and take care of the house, the dogs, and sometimes my wonderful nieces when they get sick and my sweet sister just can’t take off of work. Speaking of that sister – I thank her for always knowing when I need to laugh and being so good at making me laugh, but also knowing when I need to just be alone with my thoughts. It’s during those times that she sends some of the best cards. Then those nieces I mentioned who have sent sweet cards and constantly pray for me to be able to get well and come home. They let me know how missed I am but they also seem to understand how important all of this is. I know they miss their “Nana” while she is up here with me, but I thank them for that sweet sacrifice of not having Nana for awhile. I have wonderful in-laws who pray diligently and send me sweet gifts and whose church friends have sent so many cards letting me know how much I’m being prayed for! Also a wonderful brother-in-law & sister-in-law & 2 more wonderful nieces that pray and even sent me wonderful homemade lip balms and soaps! If I went into detail about my wonderful extended family –my sweet aunts, uncles, cousins, etc. Well, let’s just say I could write a book on how many uplifting cards and more importantly, how many prayers they say on a daily basis. I hope you all know how very loved I feel even if I haven’t been able to keep up with writing thank you notes.

I have written on here before about how I feel as though I have “lost friends” during this process and I know I have, but God has replaced each one with another person who is full of His love and showers me with His blessings through emails, messages, cards, gifts – the list is endless and I cannot begin to explain how very amazing His timing is on these things. The very day I feel overlooked or ignored, He makes sure He has someone send me something or email me a loving message so that I can never once say that I had to go through this without friends. I think that’s the strangest thing about having Lyme (and its many co-infections) is that God works through this disease like no other I’ve ever seen. Perhaps it’s because no one understands Lyme until it hits someone they know. The general population has NO CLUE what havoc a small tick bite can cause and the medical community has basically shunned anyone who believes Chronic Lyme (or late stage Lyme) exists. Therefore, those of us who battle this deadly disease (and yes, it is deadly – especially once it “gets into” your brain and your heart) must stand together and help one another in ways that might not be so necessary if this disease was understood or accepted by the medical community. I have found so many friends here in the clinic who understand what being sick for years is like, who know the pain of friends or family thinking they were “hypochondriacs”, who have spent untold amounts of money in pursuit of what so many people take for granted – GOOD HEALTH.

I was not able to go home for Thanksgiving and I won’t be home for Christmas either which really makes me sad. The idea of not seeing my family or Mark’s family for Christmas is just hard to fathom. It would be my first Christmas away from my family and I was getting a bit “Bah Humbug” about it all. Then, just now, as I typed that thought, God does what He often does as I type. He showed me just how stupid I was being and how stupid that very thought was. He is making me think about how the whole point of Christmas gets overlooked most every year as we all go in search of the “perfect gift” or the “perfect tree” or the “perfect meal” to serve at holiday parties. God is letting me see just how much the devil LOVES to keep us preoccupied with all these “necessities” so we don’t even think about what we are celebrating, or rather WHO we are celebrating. We are celebrating the birth of Christ. We are celebrating the best gift anyone ever could receive – God’s gift to us of His only son. The gift of Jesus, who came down to earth to walk among us and then was sacrificed so that He might carry our burden of sin away and show us all that God loves us with an unconditional love. We don’t have to “earn our way” to heaven – in fact, we simply CANNOT earn it. All of this, the whole reason Christmas exists in the first place, is so often put in the back of my head (and maybe yours too?) that it is only thought of when we see a nativity scene or head to church to see kids in a Christmas pageant or hear the choir sing beautiful carols.

Before I started typing this entry I thought I’d decided to not even get a Christmas tree or any decorations at all because this is not my HOME, and I didn’t want to remind myself of all the fun I would be missing out on from being away from my family and friends. Guess what – God made me realize that of all the people I know, I should be the first one in line to get a Christmas tree and a nativity scene. They won’t be big or showy or even expensive, but God is making me realize how very human I still am in all of this. I was going to “try and forget Christmas” so I wouldn’t be sad about missing out in so many traditions. TALK ABOUT MISSING THE POINT!!! God has done so much for me and I was going to “ignore” the celebration of the birth of His son????? God has always been working in my life – I just haven’t always been as aware of it as I have been this past year. I am so very thankful to Him for never leaving my side, for giving me strength I would never have without Him, for allowing me to discern what His will for me is in some of this journey. I will never know all of God’s will, but I pray to discern what He wants me to do during this time. I have found He has no bigger plans for me than to just spread His love as often as I can to as many people as I can. Whether that means I talk about Him to someone in the clinic, or they hear me pray to Him with prayers of thanksgiving during an awful seizure and think about what they have to be thankful for, or if it simply means trying to write a lengthy blog that praises His name as often as I can. I meant for this to be short – don’t I always make that mistake??? Good thing I don’t have an “editor” – haha. However, as usual, I started to type and God began to show me what I was doing wrong and how I could do it “right”. So, I am going to use this “last day of freedom” from some of my noise & light sensitivity and do something that might seem stupid. I am going to try to go to Target and get a small Christmas tree and a nativity scene. I am praying now that I can make it through the trip. I know I could send M, but God has laid this on MY heart and I know that if He wants me to do something, He gives me the strength to do it! I pray for that strength today and as I start off on another round of IV treatments tomorrow at 12:30 and then Tuesday we will all be back to the grind with our twice daily treatments.

I pray that every person reading this remembers why we have Christmas trees, or presents, or sing carols. It is in remembrance of God’s greatest gift – the greatest gift we could ever hope to receive – His son, Jesus Christ.

Thanks for sticking through another rambling entry as I type and allow God to lead me (sometimes the long way around) to what He wants me to write. Lengthy though it may be, it shows just how He works as I write.

“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

“And there were shepherds living out in the fields nearby, keeping watch over their flocks at night. An angel of the Lord appeared to them, and the glory of the Lord shone around them, and they were terrified. But the angel said to them, ‘Do not be afraid. I bring you good news of great joy that will be for all the people. Today in the town of David a Savior has been born to you; he is Christ the Lord. This will be a sign to you: you will find a baby wrapped in clothes and lying in a manger. Suddenly a great company of the heavenly host appeared with the angel, praising God and saying,
‘Glory to God in the highest, and on earth peace to men on whom His favor rests.'" Luke 2:8-14

P.S. I waited to post this until after my shopping trip so I could be certain that God did want me to go out and get some decorations for His son’s birthday! Guess what???? I went to Target, Pottery Barn and Crate & Barrel all within 2 hours and am only lacking a good nativity scene & tree topper, which I bet I can find on Amazon. God laid something on my heart and He gave me the energy and the best husband, M, to help me get it done. We should never worry about tomorrow and when we think we “know what we should do” but aren’t sure about how to do it – just go to HIM in prayer. God answers prayers both big and small. Thank you, Lord, for once again showing me where I was going wrong in my thinking process and for steering me back onto the right path. I continue to learn every day that I am more human and more prone to error than I like to admit, but it’s in the admissions of my errors and in showing how God uses those to get me “back on track” that I think helps everyone see that I don’t consider myself “special” – I’m just doing what God has put upon my heart to do & sometimes I don’t even do that very well.

Just a "quick update"...

Okay, so I had 4 grand mal seizures in 2 weeks. I cannot begin to describe the pain that comes from whacking and thrashing your body around as though you were demon possessed! However, due to the frequency & severity (2 of these seizures lasted about an hour), the doctor sent me to the neurologist to make sure we aren't overlooking something major. We think it's the Babesia. Seems that the Babesia isn't just making my red blood cells "sticky", it's actually "fragmenting" them - the doctor's non-scary way of saying "tearing". So, when your red blood cells tear you definitely aren't getting sufficient oxygen to parts of your body and if the brain doesn't get enough oxygen it will most definitely cause a seizure.

So, met with the neurologist today. I like him and he seems extremely smart and even somewhat well informed on Lyme patients. My doctor had called him and had him work me into his hectic schedule and we were very appreciative. Due to all the seizures, we decided to start me on just IV fluids Sunday through Wednesday (which is the last treatment day for 5 days...hate to think about that!). Anyway, we were doing anything we could to try and get my sound and light sensitivities down enough so that I could even be examined or have an MRI, etc. Lately sunlight has not made me reach for my sunglasses, but rather my scarf & I tie it around my eyes to completely block out the light. The slightest noises have set off seizures so I am always either wearing ear plugs or my Bose noise reduction headphones, but often I am wearing both. The fluids have helped to calm things down so I was able to have the MRI of my brain done this evening. Loud noises for 45 minutes was difficult but I was allowed to keep my ear plugs in and I praised the good Lord for all the wonderful things He is doing for me to keep my mind of the noises. I was so happy when it was over. Tomorrow Mom leaves & M returns and we have an afternoon appointment to have some other brain test done. I forgot the name of it, but I've had a lot going on so forgive me :) Then Friday night I will do a sleep study for the neurologist as well. He thinks there's something going on in the "sleep center" of my brain and my IV doc says they've discussed my gabba receptors??? I haven't felt up to looking any of this up and honestly, I've been told to not be on the computer or to watch t.v. or any other activity that might stir up my central nervous system.

Oh - and my doctor's appointment on Thursday went very well so thank you so much for all of you who prayed. I needed the Lord's guidance and I felt I had it the whole time I was in the meeting. The really neat thing is how I was able to work in all these tests this week while I am off the antibiotic IVs and the Mepron (Babesia medication) because now I will at least be able to start back on the antibiotic IVs after the Thanksgiving break. This may sound odd, seeing as how I will be far away from family and friends this Thanksgiving, but I feel I have more to be thankful for this year than in any years past. I thank God for getting me here in His perfect timing and for being with me during all the days I thought were just "too hard to handle". Turns out I can handle a lot more than I thought - I just have to lean on God and allow Him to get me through it all.

On a good, yet somewhat sad, note...my sweet friend S got to go home to Alabama after 8 months of IV therapy! I was so very happy for her, yet somewhat selfishly sad because no one else could ever make going to treatment as fun as she always did. Plus, since we lived so close together in the apartment complex she came over all the time. In fact, there were many days I said she put her "nap voodoo" on me because we'd be sitting in my bed on our laptops and she'd say, "I think I'm just going to lay down for a minute." Next thing I know I would wake up and we'd have been asleep for 3 hours. Much needed sleep for me. I already miss her amazingly wonderful self. She's probably one of the most unique and interesting people I've ever met - the fact that she is just so amazingly artistic at ANYTHING is what makes you want to be jealous of her, but you can't be. Why? Because that's right when she'll turn around and show you some awesome thing that she made for you. Generous to a fault, loyal beyond limits, she is a true friend, a "war buddy" that I will always love. Glad she lives so close to my house in Alabama, although when S gets well (we all leave here still on treatment - just orals instead of IVs), I can't imagine her almost 21 year old self wanting to hang out with me & M...lol. But she is always full of surprises, so you can never tell.

Okay, too much computer today. I must go. I want to say I hope you all make sure to make a long list of what you are thankful for this year - it's so much more important than the traditional Thanksgiving dinner. We need to give thanks every single day - but how sad is it that we often miss out on doing so on THANKSGIVING DAY?? I pray you all have much to be thankful for and if nothing else you can be thankful that each day you wake up is a new day to start fresh with God. I try and do that every day - I fail sometimes, but He already knows I will. I am only human, right?

Much love - many prayers for you all - and OH HOW THANKFUL I AM THAT GOD MADE ME START WRITING ALL THIS BACK IN MAY SO THAT I COULD COUNT EACH AND EVERY PERSON WHO READS MY RAMBLINGS AS A BLESSING ON MY LIST OF THANKS :)
K

Dazed and confused...

This may not be my most inspiring post but I had to update you all. It's been a rough week (and yes, I know it's only Tuesday) and I'm needing many prayers for my doctor meeting Thursday morning at 8:00 a.m.

So, what's been so rough? Well, I'm not completely certain, but the Mepron and Babesia are having a continued battle in my body that always seems to end with me having a grand mal seizure. I had one Friday afternoon. However, my seat mate & coolest girl ever, S, and I had made a "contingency plan" if another seizure were to rear it's ugly head. Instead of me trying to make it to the nurses' station our plan was that I would tap S on the arm and she would help me slide onto the floor while one of our other treatment friends, or S herself if need be, called out for help. While awaiting the nurses we planned for S to grab the 5+ memory foam pillows I use to try and make my chair comfortable and start shoving them under & around my head first. Then grab my down comforter and some of her own pillows and whenever I arched my back up she would be shoving those under my back and rear end. This was a brilliant plan and we pulled it off almost flawlessly on Friday afternoon. The one thing we hadn't counted on was my IV pole being in the way. The poles have four "legs" that come out at the bottom and the wheels are on the ends of these "legs". When I slid down onto the floor my right shin bone hit the IV pole and made a pretty good scrape and a nice knot with some bruising. However, this was a much better outcome than the hematoma (sp?) that I had on my hip from my last fall onto the tile floor. Also, I was able to feel this one coming on a bit sooner and therefore had the Valium injection faster so while it wasn't fun, it definitely seemed a lot easier on my body than the last 2 seizures.

I had IV fluids that day and the day after for both treatments. I was still sore, but not as bad as before. So, we marched on forward as we IV patients tend to do. I knew that the fact that I had seizures on my last 2 Mepron days was not a good thing. I worried that it would happen again on my next Mepron day. But, the doctor had basically told me that we HAVE to fight this Babesia because it may very well be what is causing a majority of my cardiac issues. So, as hard as it is, I want to get rid of the Babesia. The doctor had increased my anti-seizure medication already, but Tuesday I got another anti-seizure medication prescription. As she put it this one should, "really slow your central nervous system down". I knew it had to be a fairly strong drug because you start with 1 pill at bedtime every night for 2 weeks, then 2 pills at bedtime for 2 weeks, then 3 pills at bedtime for 2 weeks and then finally we will reach my dosage of 4 pills at bedtime every night. I started it on the 10th so I have only had 1 week of it in my system. Still, no one said to skip my Mepron dose for today and I went ahead and took it hoping that the anti seizure medication increase along with the newest anti seizure drug would help ward off any seizures or tremors.

Well, I was wrong. Not quite sure exactly what "triggered" this one, but it was blood draw day - the one day every week where we have our blood drawn for CBCs and Chem panels. Today I had to have about 6 extra vials taken though because the doctor is sending those off to the lab that gave me the "neon biofilm picture" and re-testing some things to check and see if we've made much progress, or any progress for that matter. So, I had eaten a good lunch at 2:15 or so and at 3:00 had my blood drawn. I went into the hallway and sat in the floor with the other IV patients from my treatment room. We have to wait for a nurse to be present before we can enter the treatment rooms and so this "hallway congregation" happens often on blood draw day.

Oh, sidenote...I haven't mentioned that my sweet husband, M, got me the Bose noise reduction headphones since my seizures have seemed to be triggered by sound lately (love him for all he does). I still have to use ear plugs with them to make most noise go away, but they are extremely helpful for changing the pitch of some noises and softens most as well. Alone I can still hear people talking to me, it just doesn't seem as "shrill" or as harsh.

Okay, so back to me sitting in the hallway. I started to realize that the noise of the people talking and laughing was causing my brain to freak out. I looked frantically for my headphones only to realize I hadn't packed them into my backpack like normal. Another sidenote...it snowed here this morning - yes, this Alabama girl went to treatment this morning in a car with an inch or so of snow on it! It was too warm for it to cause any trouble on the roads, but still, snow in November is an oddity for me! I blame this odd weather for my forgetting my headphones this afternoon because I normally wear them to treatment but didn't want to get them wet since by this afternoon it was raining, not snowing. When I couldn't find them I literally had to get into the nearest bathroom as fast as possible and close the door and put my hands over my ears. I took my phone with me so I could call mom and see if she could bring the headphones to me. I called and she sweetly and quickly brought them. I texted S and asked her to tell the nurses where I was and she brought my IV pole into the bathroom for me and got the nurse who so kindly started my IV while I sat in the floor of the bathroom crying. That happens a lot when a seizure is about to happen. I will have a strong emotion, anger or crying, but this time I felt the crying was justified because I LOVE to hear people laugh. I love to MAKE people laugh. Yet, here I was running into a room with my hands over my ears because people were talking and laughing. Yet again I started to think about all the things these multiple diseases have stolen from me. How they have changed me into a person I don't even recognize somedays. My sweet nurse let me cry about it and sat with me until mom came with the earplugs and headphones (I keep them in the same case). I explained as best as I could what happened to mom but I knew I wanted to get her out of there because I felt that a seizure was coming. So far M has only had to see the tail end of one seizure and Mom has seen one try to start, but THANK YOU GOD, neither have had to see the full blown episodes. I continue to believe it is harder to watch someone have a seizure than to actually have one yourself.

So, mom left and I went into the treatment room and got in my chair. I don't know that I was there for 5 minutes before I thought, "I need to go get the nurse to give me an Ativan shot and maybe we can keep this from happening." I should have just gone with the contingency plan S and I had made. By the time I was in the nurses station trying to ask for the shot, I knew it was too late. I sat and then slid into the floor and the nurse practioner, the head of the IV nurses, and 2 IV nurses all worked amazingly well and quickly to get me into a position to get the Valium shot (Ativan doesn't help once the seizure starts) and they also ran and grabbed most of my "chair bedding" to try and keep my body from crashing into the tile floor. I did not lose conciousness and I honestly think it's due to all the focused breathing I've had to learn to do over the past 16 years of passing over 100 kidney stones. I don't like the idea of someone else being in the driver's seat of my brain and I fight very hard to keep control or to keep focused so I don't lose conciousness. However, even with the shot being administered within the first 10 minutes of the seizure, it still lasted close to an hour. It doesn't hurt when you have these, but knowing how much you will hurt later makes you want to try and keep your body from flailing about as much as possible. I tried, but still came home with new bruises and I know if I were to go to the E.R. for something right now they might be suspicious about spousal abuse - haha.

Again, during this seizure I prayed aloud to God. I thanked Him once again for always being with me, for allowing me to feel His presence during times of crisis. I thanked Him yet again for the wonderful nurses who hold me, pet me and tell me how much they care for me. Although I would of course, rather not have seizures at all, I thanked Him yet again that for the 4th time, I was right where I needed to be to have a seizure. I was where there were caring people with the training and medication needed to help me. I thanked Him for allowing me to feel peace in the midst of the chaos that is a seizure, for allowing me to hold onto my sense of humor instead of just crying and screaming about whether what I go through is "fair" or not. Everyone has their own cross to bear. I've just made mine public knowledge. I don't think what I am going through is anymore important than what anyone else is going through. I just know God wanted me to write about it. So, I do. I pray I write the words He wants and I pray that every person who reads what I write knows that it comes from the Lord and not from me. I pray that in some way every person who reads this is blessed by it, that they read it and think about what they have to be thankful for in their own lives - even if they are in the midst of a "dark time". I pray for all of you who are praying for me and that is how it should be. The body of Christ should pray for everyone they know. They should pray for people who are having obvious problems and for people who seem to have it all together because no one has it "all together". We are to spread God's love here on earth and I want to make sure I do that. This blog is just one way. I pray that I get to become healthier and can do much more to spread His love than to write from my sick bed, but I know for now this is what He is leading me to do, so I do it and humbly pray that I do it justice.

So, I know this has been long. I've decided I just can't write a "short entry" and have stopped giving false promises about this. BUT I NEED YOUR PRAYERS!!! I will be meeting with my doctor Thursday morning at 8:00 a.m. and I am praying for God's will to be clear to me. For God to speak through me and that He will allow me to know if this is the right place for me. I know He led me here, but I am unsure as to what His plan for me being here includes. It could be for my healing, and we pray for that, but I have given my life over to Him. I have prayed that His will be done and that doesn't always mean we get what we believe to be the best outcome. God uses so many things to teach lessons - both good and bad things. I know He wanted me here and I pray He will let me know if I should stay or go. If you're wondering why I would leave, well, honestly, this body of mine is so very tired. It's been fighting hard, but it is showing the wear and tear of years of battle. So, I want to know if my expectations and the expectations of my doctor are on the same path. I also want to know just how hard I should push my body before saying, "THAT IS IT! ENOUGH ALREADY!"

It's hard to make these decisions when you are in treatment because your brain isn't working well. So, I pray, and I ask all of you to pray, that God will let His will be known to me as far as what to do next. How far do I go in search of good health? How much can one body handle after 30 years of illnesses? How do you know when "enough is enough". I know you have to get worse before you get better. I've said before that this treatment is similar to cancer treatment in that you never feel good during it (as cancer patients feel so much worse during chemo or radiation therapy) but you have to keep comparing the lab results to see progress because your body is never going to feel "good", sometimes it won't even feel "better", while you are "on the drip" as they call being on IV meds.

Finally, I want to thank so many of you for your cards and sweet notes of encouragement. But, you don't have to send get well cards - you can simply write a comment below any of my posts to let me know you are keeping me in your prayers. I feel your prayers and God uses all of you in such a powerful way in my life. I have so many people to thank for their love and support and trust me, when my brain starts thinking clearly, you will all be getting some sort of thank you note!!!

Now for the "real word" and that to which I cling the most - God's word:

"There is surely a future hope for you, and your hope will not be cut off." Proverbs 23:18

"Be joyful in hope, patient in affliction, faithful in prayer." Romans 12:12

"As the heavens are higher than the earth, so are my ways higher than your ways, and my thoughts than your thoughts." Isaiah 55:9

"I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." John 16:33

Much love to you all & MANY PRAYERS for each and every one of you!
K

Crazy thoughts and head spinning seizures

Well, this is going to be short because I really can't think well right now. I just need your prayers. I had another grand mal seizure on Thursday afternoon. Again, God was with me and I was at the clinic when it happened so I had nurses doing everything they could to help me. The only bad thing about having a seizure at the clinic is that when I seize I HAVE to be on the floor - if I try to stay in my chair I just fall or slide right out of it. So, I seize on the cold, hard, tile floor at the clinic. Since my body goes into horribly weird positions I often find that I am hitting my back repeatedly flat onto the floor only to raise up into a backbend like position and do it again. This doesn't hurt when you are in the midst of a seizure but afterwards you feel like someone beat you down with an aluminum bat.

So, now I have to schedule an x-ray of my spine to make sure I didn't damage it. I have a horrible black/blue bruise on my left hip and have no idea WHEN that happened or HOW it happened - I just know it was at some point during the seizure. I'm concerned that I might need to get that area x-rayed as well since my deficiency in Vitamin D has caused me to have osteopenia (sp?) in my hips. That's what you have before you go on into osteoperosis. Basically it means my hip bones aren't as dense & could fracture more easily.

Now, I'm on 1,200 mgs of my anti-seizure drug but we're thinking this is coming from the Mepron and my Babesia fighting hard to stay in my body. I won't be taking Mepron tomorrow (which would have been day 4 since I took it Thursday) and trying to test our theory that the Mepron is causing more problems than we thought. I may have to stop trying to treat the Babesia for now until we can get some of my other chronic illnnesses gone - like the Influenza A & B. I'll keep you posted, but for now they have me drugged to the max to keep me from seizing and it keeps me from being able to think straight. I'm off to try and nap now.

Last thing - God was with me people - He was holding my right hand the whole time. Even though a seizure is one of those things you want to say "WHY ME, GOD? DON'T I HAVE ENOUGH ALREADY?" it's all part of His plan. He never allows me to be away from the clinic when they happen which shows me yet again that He is carrying me through this time of pain and tears. God didn't make me have a seizure nor did He give me all these illnesses, but He is using all of them to turn me into the person He wants me to be. One that trusts in Him at all times, in all ways. I do trust Him - I hope I follow His word and I pray that I spread His love. I pray I don't have to go through another seizure, but if it is what will bring me to my knees (literally and figuratively) to praise His name out loud - to pray to Him during those times with thanksgiving of what He has given me. Like a wonderful family, a loving husband, a doctor who finally knows what is happening in my body...He is to be thanked at all times. I PRAISE YOUR NAME DEAR LORD AS THE ONE WHO HOLDS ME UP, WHO SURROUNDS ME WITH THE AWESOME LOVE OF YOUR PRESENCE. I know God is with me during those times because I feel Him and so do others. Pray that you and I will both know to PRAISE HIM during hard times and that we will never take the small things He does for granted. We often overlook the small things and focus on the big things we think He IS NOT doing for us. We should praise Him all day long for just giving us another day to ask for His forgiveness and mercy. He gives those in such abundance it's amazing to fathom how He does it all.

I must nap now. But found this verse to be one to cling to:

"The Sovereign Lord is my strength, he makes my feet like the feet of a deer, he enables me to go on the heights." Habakkuk 3:19 (NIV)

He will bring me to the heights - it will be the height of healing, a height of compassion for others, a height that will lift me up out of this valley of sickness and pain and up onto a mountaintop to shout out loud my love and praise for Him.

Much love to you all - thank you for every single thought and prayer.
K

Crazy meds equals crazy entries...sorry ;)

*Editor's Note: I apologize to those who read this entry when I first posted it at 10:30 or last night. I had been writing it in bits and pieces for a week and when I finished it I signed off and hit "POST" before really looking it over. Turns out I had another version of the same information lower down on the screen and couldn't see it. I told you all, my brain is malfunctioning & I cannot be held responsible for having these entries make sense, or apparently even be in the right order...sigh. Anyway, once I caught my error I erased the bottom part that may have been quite confusing for people to read!!! Hope you are all having a blessed day!


I've been trying to write this entry since I met with my IV doctor on Tuesday. I would write a litte and then stop because I wasn't sure if I could explain everything clearly. I'm praying God helps me get the information across successfully.

I wrote in earlier entries that the Babesia was causing severe mood swings and even a lot of rage. I believe I also wrote about how the medication for it (Mepron) was turning me into a psycho lunatic with a tendency to cry at the drop of a hat. I need to stop here just to say a big thank you to my mom and M for putting up with me so well! I wish I could get away from myself when I act like that, so it's hard to fathom how they can handle it with such patience. When I say mood swings I mean one minute I can be laughing and seem fine and then within a minute or two I'm furious over something stupid or I'm crying hysterically. I thank God for their ability to continue to put up with me. Now back to my update...



I also wrote earlier about how the doctor was trying some different things to help me not feel so crazy. Before I even started the Mepron my doctor already knew I would not be able to handle taking it twice a day every day, so the plan was to take it every 3 days. Even with the 2 day break between the doses, I still felt like I was going absolutely insane! So then we changed my IV treatment to help ward off some of the Mepron side effects. The easiest way to explain is to give an example, so if I took Mepron on Monday I would get IV fluids during both my morning and afternoon treatment sessions instead of IV antibiotics that day. Then on Tuesday, the day after the Mepron, I would get IV fluids again during morning treatment and switch back to IV antibiotics for my afternoon treatment session. That did seem to help my rage issues but I was still having a hard time. I am amazed by the patients who can take Mepron every day but it just goes to show how everyone handles different medications in distinctly different ways.

I realized that I was having a much harder time with everything by Saturday, October 24th. I had a stabbing headache behind my eye for a few hours and by the end of treatment I knew a seizure was coming on. I may have written about this in an earlier post but my brain is mush and I cannot remember what I have told to whom. Anyway, with an Ativan injection at the end of treatment and an extra oral dose of Ativan and Valium when I got home, we were able to keep me from having another grand mal seizure. I just had a lot of right side tremors and couldn't speak very well. This went on again on Sunday and Monday but I HATE Ativan shots because it's a thick medication to inject so they hurt. I just did my best with my oral meds to keep from seizing and I did not have anything worse than the difficulty speaking (horrible stuttering) and major muscle jerks and tremors. I knew I was going to have my meeting with my IV doctor Tuesday (October 27th) so I could discuss all of this then.


Medically speaking, Babesia is easier to get rid of than Lyme or Bartonella or even Influenza A and B really. However, the physical symptoms that manifest in some patients are hard to deal with. I am dealing with really bad joint pain, muscle pain and twitches, and horrible headaches. Really my whole body is in pain. Babesia doesn't stop there though. It goes a step further and messes with your mind making you feel so horribly depressed that you can't even think rationally. I was definitely getting heading into what felt like an emotional black hole. The good thing is that God allowed me to see these dark thoughts were not my own. He made me see that they were not how I think at all. I can't begin to explain how weird it feels to have your brain working against you. The closest description I've found is it feels like someone else is behind the wheel instead of me and they are controlling what thoughts pop into my head. The end result is me feeling as crazy as the Mad Hatter in Alice in Wonderland.


Now to tell you what news came from my meeting with the doctor. It was evident that we were going to have to change my treatment plan yet again because my body was going to seize if things kept going they way they were. Treating someone like me who has multiple chronic illnesses requires a lot of "tweaking" to the medications. By "tweaking" I mean that I might stay on the same medication but take it at different times or take a smaller or larger dose of it. Medicine is a science but it's also called a practice for a reason. That is because even the best doctors can't diagnose and treat illnesses with the exact same medication and the same method for each patient. It's trial and error no matter how you look at it.

The decision was made for me to take the Mepron every 4 days instead of every 3 days. I'll still receive IV fluids during both treatment sessions on the days I take Mepron and through the morning treatment the day after as I explained above. I'm happy to say it seems to be helping. To keep me from having to go through another grand mal seizure my anti-seizure medication was changed so that I am taking triple the amount. This medication is good in that you can take up to 3,000 mgs of it without major side effects. I had been taking only 300 mgs at bedtime. Now I take 300 mgs with breakfast, then before my afternoon IV treatment session, and continue with the 300 mgs at bedtime. Also, the decision was made for me to take one more Ativan pill daily. The IVs push the toxins around and you often feel a lot worse after treatment than you did before. I was taking 1 mg of Ativan with breakfast, another when I came home from morning treatment, another before afternoon treatment and then one at bedtime. Now I will be adding one more after my afternoon treatment to ward off seizures.

Then there were some new prescription medications added as well. Since I don't do well with codeine based pain killers (they cause more depression and can often cause constipation - sorry, but it's true), I am now trying an opiate based pain killer. The brand name is Darvon and I can take up to three a day. This has been a miracle drug for me as far as the constant pain is concerned. It doesn't take away all the pain - like the pain in my hands and feet - but it does allow me to sit in my treatment chair without wanting to cry out in pain.

The other prescription is an anti-parasitic drug (also used as an anti-malaria drug) that the doctor thinks I need. Apparently researchers are finding that people who have large biofilm communities in their blood tend to have parasites inside the biofilm. I am not sure if the parasites are causing the biofilm or just causing them to become much larger, but either way it isn't good. The doctor said most of her patients from the Southeast section of the country have a common parasite - of course I forgot the name of it - haha. Anyway, she said it's acquired by swimming in lakes, streams and rivers and swallowing water. Since I have swam in every body of water I can think of from lakes to rivers to rock quarries, I figure I probably have that parasite. Before I can start that medication though I have to go to the eye doctor first. One side effect of this oral medication is that it can often increase pressure in your retina (or cornea? - sorry my memory is shot & I'm doing good to type this much out - haha). So, the eye doctor will measure my eye pressure before I start the medication to get a "baseline reading" and will then recheck my pressure every so often to make sure it stays in a normal range.

Okay - last bit of news. I have broken up more biofilm - YAY ME :) Bad news is that this biofilm community unleashed another active round of Influenza A and Influenza B. That could also explain why I was trying to have another seizure. I think I wrote before that in immuno-compromised patients the flu can play some nasty tricks on the brain - seizures being one of the dreaded ones. So, boo for me having active Influenza A since before I got here and boo for having another active case of Influenza B since I had gotten rid of that in July, but remember, I have to get a lot worse before I can really get better. So even the bad news turns out to be the good news.

News from the non-medical front is that my chair mate and by now extremely close friend, Suz, will be leaving in 2 weeks. I am so very happy to see her headed home and that she can now switch to the oral treatment that isn't quite as hard on your brain. Orals are not easy at all, but when you take oral antibiotics AND IV antibiotics you can imagine how hard it can be on your body. So I am thrilled to see her make such progress and I know she will go on to do amazing things with her life. However, the selfish part of me will miss her tremendously. I thank God for sitting me next to Suz who has a huge, caring heart, who is amazingly creative capable of anything - drawings, paintings, handmade jewelry, photography, and really anything you can think of - she can do it. What I will miss the most is her wonderful sense of humor and her infectious laugh. I do love making her laugh and she makes me laugh just as much. Since we live only one building away from one another at our apartment complex we also spend a lot of time together outside of treatment. I am blessed beyond words to have met this beautiful person who showed me how to make the treatment clinic a place of laughter instead of tears. I cannot thank her enough for showing me the ropes and answering my myriad of questions about all things IV related!

As for me, we will be here through Christmas and will do some more re-testing in January to see what progress I'm making. I am no longer pushing for a "go home date" because I am beginning to truly understand just how sick I was when I got here. I have definitely learned that I can't speed this process up and that God is teaching me patience in ways I never thought possible. He is with me and He never lets go of my hand. I give all the glory and honor to Him for going before me in all things - for leading me to this doctor and this place of healing - for seating me next to girls that I love and pray for every day. I pray that the next person I sit next to has just one 1oth of the personality that Suz has, but even that is a tall order. She is simply her wonderful, unique, awe inspiring self and I love her more every day.

Okay, I may have forgotten some things about my doctor's meeting. I did get a 24 hour Holter monitor that I wore yesterday and today to track my heart fluctuations and I also got a very detailed echo-cardiogram done yesterday at the cardiologist's office so I will let you know if anything else pops up. For now I think God knows I'm just trying to handle the Babesia and the two strains of flu I have. I keep trusting in God and I keep finding that He is faithful to His promises and He never gives me more than I can bear.

This has been super long and I'm exhausted. I will close with this:

"O Lord, you are our Father. We are the clay, you are the potter; we are all the work of your hand." Isaiah 64:8

"It is good to praise the Lord and make music to your name, O Most high, to proclaim your love in the morning and your faithfulness at night." Psalm 92:1-2

God is working on me as a potter would shape a bowl. Once the shape is correct the bowl might go into the fire (or kiln) to harden - maybe I'm in the kiln right now? But I do know He will work on and in you if you ask for His help and trust in His word. I praise Him through all of this - even those dark and depressing days I praise Him for the little treasures He sends my way, like wonderful treatment friends who show me what strength, determination, and a positive outlook can overcome. I pray you all have friends like that or that you are that kind of friend to others.

Much love to you all -
K

Emotions versus reason

I'm so emotional right now. Yes, it's after midnight and despite all of modern medicine's best attempts, I am not asleep. I'm crying. I'm crying and I've been crying off and on for about 3 hours. This is not the "normal me"...this is me on drugs - treatment drugs. This is me on IV and oral antibiotics with a brain that keeps wanting to go into seizure mode. This is me who cannot find peace because I let my mind go to the dark places and this is me who seems to find things to worry about. This is the worst version of me - the weak, tired, upset, frustrated, impatient, scared girl (yes, I am 34 and have yet to call myself a "woman"...sigh...we'll address that in therapy after this is all said and done I am sure).

In short, this is me trying to figure out my future, trying to see beyond right now and thinking that I can plan for all sorts of contingencies. But I cannot. If I focus on what is ahead, well, I miss what is happening now. Although what is happening now is no fun and I wish I could just skip right through the whole thing, it is a part of my life here on this earth. It is a part I must go through - whether or not I know the reason matters not.

So, basically this is me when I don't turn to God - instead I get myself all good and worked up, shed copious amounts of tears, imagine horrible scenarios for my future, cry to the point where I have no tears left, and then finally I realize that I wouldn't be so upset if I weren't trying to figure out "secret things". What do I mean by "secret things"? I mean my future. My future is a secret to me and to everyone around me. The only one who knows what my future holds is God. So, when I worry and stress over all the "bad things" that "could" happen instead of reaching for my Bible or just saying a prayer through my tears, I'm trying to control what is beyond my control. I'm stressing over "secret things" that belong only to God unless He decides to share them with me. So far in this journey I've only felt that God wanted me to come to this clinic and see this doctor. He hasn't informed me of the amount of time I will be here or how hard treatment will be or when I might possibly just get to go home and visit my friends and family. I just know that He told me to come here and that's what we did.

Tomorrow - wait scratch that since it's already after midnight - TODAY I have an appointment with my doctor. I will be in that meeting before my afternoon IV treatment session. Tomorrow I have an appointment with the cardiologist that my doctor works with. I wish I felt a little more sane, but it seems I lose my mind before these appointments. I've been losing my mind a lot lately. I've told you all how this new medication for the Babesia is causing me all sorts of trouble and although we've switched my IV treatment around that medication so I am getting just IV fluids every 3 and a half days, well, I still feel crazy. My brain still feels like a ticking time bomb wanting to have another seizure at the drop of a hat. However, with well timed meds I have been keeping that from happening. I will discuss all of this at the meeting of course. I don't know if switching off the IV antibiotics to IV fluids so often is causing me more problems than just being on straight IV antibiotics, but something has to give. I am going to see if it's possible that we stop treating the Babesia for now because I feel the treatment has made me feel worse than the Babesia itself did. However, since Babesia can cause a lack of oxygen (apparently due to red blood cells sticking together more???) then I may have to keep on treating it because it could be why my cardiac issues have been flaring. I don't know. I guess I will know more tomorrow.

So, please pray. My appointment is for 1:00 p.m. which usually means it will start closer to 2:00. Then tomorrow is Tuesday which is "blood draw day" for the side of the clinic my treatment room is located in so I will leave the meeting, walk to the lab to have my blood drawn, then head into the treatment room and start my 2 hour bag of IV antibiotics. Basically, I miss out on having much nap time in between treatments. It will be worse the next day when I go to the cardiologist because that appointment is at 11:00 a.m. Oh, and this will make my Lyme friends laugh. The cardiologist's receptionist called to remind me of my appointment and to tell me I need to bring ALL of my medication - prescription & supplements - to the appointment with me in their bottles. She has no idea what she's asking for...hahaha. I wonder if I should just use a garbage bag to get the point across that I am on many medications. Sad thing is that I need to be adding more this week. I need to be adding Vitamin D & K as well as Iodoral (which I believe helps my body use iodine more efficiently which assists the thyroid hormones - I think??) Of course I will just have to have my amount of IV Doxy, IV Heparin and IV Benadryl written out for them.

Okay. My point is this (yes, I do sometimes have a point) - worrying about all of this is getting me nowhere. Crying for 3 or so hours has gotten me nothing but a headache and a lack of sleep. When I felt that overwhelming out of control feeling hit I should have known to reach for the Bible. I should have known to call out to God. As soon as I picked up a book that has a lot of good scripture verses in it, I immediately came across these:

"Lean on, trust in, and be confident in the Lord with all your hear and mind and do not rely on your own insight or understanding. In all your ways know, recognize, and acknowledge Him, and He will direct and make straight and plain your paths." Proverbs 3:5-6 (Amplified Bible)

"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:34 (NIV)

So, had I just gone there first I bet I wouldn't have this headache. I know I would be asleep (well, I had to share this with you all first, so I might still be typing) and as the saying goes, "all would be right with the world." However, I failed to do that. The good thing is that God didn't allow me to wallow in my failure. He kept pressing on my heart until I turned to face Him. When you keep your eyes on Him, the rest of it just falls away. The worry washes off and a sense of calm surrounds you. This is not by my doing - it's what happens when you truly focus on God and allow Him to lead your thoughts. I was emotional and upset. He knew that. He also knew that I was worried about my future, about how long I'll be here, about the length of time I will have to feel this bad and He saw me trying to reason out what I would tell the doctor tomorrow. He then saw me get despondent about that appointment, deciding I did not even want to go and hear what news there might be. I went from overly emotional, to trying to reason with my mind, to finally feeling God push me towards the simple truth. I have nothing to worry about because He is with me. He has plans for me - "secret plans" - plans I will find out as I go about day by day putting my trust in Him.

So there - I'm not this strong pillar of faith. I'm a simple human being who fails miserably and will always fall short which is why I need the grace of God to help me through this life. I have never done a thing to earn that grace - no one could ever do enough to "earn God's grace". It is something He wants to give as part of His unconditional love for us. God is good and He is strong. He is the only sanity I seem to find in this journey. I am so grateful that He allows me to stumble, fall, and even fail and He still forgives my many mistakes and patiently waits while I remember just who He is and what He can do - He is the great "I am". He can do anything and I pray that His will be done in my life tomorrow during my meeting, the next day with the cardiologist, and the day after that, and the day after that, and every day that I am breathing and living on this earth I pray that I continue to hear His call and go to Him with my troubles instead of troubling myself with worry.

Much love to you all. Hope this wasn't a horrible ramble of an entry. Sometimes I just get started and keep on going. But now my hands are saying "STOP" because they hurt. So stop I will and I think I will close my eyes and sleep in the peace that can only come from God. Thank you Lord for all that you do and for all that you are. I hope you get to feel His presence in your life today. Be still - He will come to you if you ask Him.