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.