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.
Sunday, November 29, 2009
Monday, November 23, 2009
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
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
Tuesday, November 17, 2009
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
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
Sunday, November 8, 2009
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
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
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