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!