Your New Lyme Anthem (and some random football commentary)

An incredible woman once told me that when her husband, who was undergoing treatment for Chronic Lyme along with a myriad of co-infections, got really down and depressed she would turn on Christian praise music. Even if it is just in the background, it would help lift his spirits and change his mood.

This past weekend, after getting some very encouraging news from my LLMD on Thursday, I went through a really rough herx that lasted for days. Admittedly, I threw myself a pity party.

I am finally well enough on certain days that I can get out of the house and someone had given me and my boyfriend tickets with incredible seats to the Bama vs. Florida football game. (I apologize in advance to any Gator fans that may be reading this blog).

Quick Disclaimer: If you have no interest in college football skip the next few paragraphs...I finally make my point and I will place an asterisk where you should start reading again.

I was a student when Tyrone Prothro, famously known for making one of the most incredible catches in NCAA history (see video of "The Catch"...and picture...can you tell I'm college football obsessed?!), suffered a career-ending complete fracture of both major bones--tibia and fibula--of his lower left leg in the 2005 Florida game. 

Picture credit to http://www.tyroneprothro.com/

Sitting in the stadium while watching the majority of the Florida fans cheering and celebrating the injury with the Gator Chomp while our beloved Prothro was carted off the field is a memory that will be seared in my mind forever and created a grudge that may never be forgiven. 

[If you are on a mobil device and cannot see the video of Prothro and "The Catch", just click this link due to IT issues: http://youtu.be/Y7DSmFvDoYk ]

In all fairness, Bama fans retaliated in a classless way when we beat the Florida Gators and their beloved Tim Tebow in the 2009 SEC Championship game by replacing "Hey Gators!" with "Hey Tebow" in our Rammer Jammer victory chant as he shed, ahem, a few tears on the sideline.

I admit to thoroughly enjoying loudly lending my voice to this taunting chant in the Georgia dome that year, but in my defense, I spent my entire college career watching Alabama lose most games in its fall from grace as a historical football powerhouse. So when, as a graduate student, we finally started playing like the Bear himself was smiling down on us from Heaven, I completely lost my composure and enjoyed ever tear that fell from Tebow's Heisman-winning face. 

On a side note, I now realize that Tim Tebow is an incredible man and I have nothing but respect for him. Seeing a football player openly praise God in this era of dog-fighting and domestic violence in elevators is a breath of fresh air. I wish him all the best in his career as a football commentator and genuinely have enjoyed watching him this season on the SEC Network (didn't he look good in that houndstooth hat when he picked Bama to win last Saturday? But I digress...).

**Alright non-football fans, pick back up HERE:**

So, after receiving good news from my LLMD and having a relatively herx-free treatment week, I was elated that my health is improving and looking forward to finally getting out of the house and going to a a great football game with a strong tradition of rivalry. In the South football games are social affairs--we get dressed up, tailgate in tents or at our favorite bars from college, and see just about everyone we know, including friends I have not seen in years. Having Lyme puts a stop to any form of social life, so between the game and getting to see friends, I was ready to feel "normal" for the first time in as long as I can remember. I had been feeling so relatively well all week that I just knew I would be able to participate in all the fun (in a Lyme-responsible way, but still) without having to use an excessive amount of certain medications to do so.

This along with the fact that I had convinced myself my herxing from now on would be hard but manageable led to one of the biggest pity-parties I have thrown myself thus far in this journey through treatment. This was one of those mind-numbing, being tortured from the inside out kind of herxes that just would not quit. I was miserable. I was angry.

My anger, for the first time in almost a year, was turned towards God. "WHY!" I screamed over and over again. "Why are you punishing me?" I was so mad at Him for giving me this disease, for all of the things Lyme has stolen from me, for broken relationships due to my health, for the loss of my 20's, for living 28 years with these evil bugs and parasites living inside of me and wreaking havoc on my mind, body, and spirit.

In my anger and confusion I even asked my boyfriend what I had done that caused God to punish me so. When I am in my right mind I know the following to be true: I do not believe in a God full of wrath--I believe in a God of love; a God whose Son suffered and died on the cross to forgive our sins. A God of beauty and warmth. A God of creation. A God that is good. A God that heals. And a God that has healed me--mind, body, and soul.

But this weekend I had forgotten that God. I was angry with the "punishment" He had given me. Babesiosis, one of my co-infections, is one of the plagues that God sent to the evil Pharaoh. In my Lyme-rage tinted lenses, He had sent this plague to me. To punish me. To torture me.

Just so you know, I do not think that God 'gave' me the diseases I have. I do think they are evil. But that is for another time, another post...

So, looking back to the first sentence...I did not even remember the advice of listening to Christian-based music at the time of this torturous herx, anger, and self-pity. But my sister did send me to a link to a song that was written about a girl fighting Lyme.

I listened to it. And listened to it again. And again. I cried as I listened to the words. I cried for the loss of a regular life. I cried for all those suffering from this disease. I cried for all the lives needlessly lost. 

And I cried because God is healing me from this disease. I cried tears of joy as I realized it truly is not over yet--I can keep on fighting.

The tears were cathartic and calmed me down. My anger subsided. I awoke the next morning and I felt relatively good. The herx had run its course and I prayed to God for forgiveness for my anger, apologizing for blaming Him for my illness. 

The purpose of this long-winded, rambling and at times random blog post was to share this song with you. Give it a listen. And, when you are herxing and emotionally hurting, listen again. Have faith, for it is not over yet.

"Oh, to everyone who's hit their limit, it's not over yet, it's not over yet, and even when you think you're finished, it's not over yet, it's not over yet. Keep on fighting, out of the dark and into the light (it's not over), hope is rising, never give in, never give up, it's not over yet"

Listen Here by Clicking 'Play' (and if you cannot see the video just click on this link to listen: http://youtu.be/maSQ3cgvta0)

 

Be sure to watch this quick video of the band talking about the song that they wrote for their youngest sister and her battle with Lyme Disease: http://youtu.be/xaSM1G37yhU

Check out the lyrics by clicking the blue words: For KING & COUNTRY - It's Not Over Yet Lyrics | MetroLyrics 

And for those who were wondering...the game was incredible. I was able to watch Bama throw it down the field in HD from my couch like the team never has in my lifetime. It was an exciting game, both teams played really well, and we walked away with an impressive win. Although it has been years since I've been well enough to attend a game, I look forward to potentially going to one later this season. I am staying positive and know that with God's help I will continue to get well and will one day step back into Bryant-Denny stadium knowing that for me, it will be a huge win, regardless of the outcome of the game. And...I might even feel a little normal. 

Edited:

Sorry for all the IT issues. I'm not sure why the videos do not show up on mobile devices (it just shows up as a huge blank space), so I have just put the links on there. Also, to avoid any confusion, my pity party was based on a lifetime of having lyme disease and the effects of a herxheimer reaction, not simply missing a football game. I focused so much on the game to show how, when you have Lyme, sometimes being able to go or do the simplest things are HUGE.

I hope that you love the song and find it helpful, no matter what battle you are fighting.

love and healing,
S

ps-
If you enjoyed this article or any of my other blog posts (most of which focus more on the literal aspects of lyme disease), help a lymie out and share this blog :)

Babesia Update: Great News

BABESIOSIS UPDATE:

I left you on my last Babesia post having just started my first week of treatment. And I was herxing terribly and felt there was no escape from the Hell of the antibiotic regimen and anti-malarial protocol I had just started. 

After rallying I decided I was going to do everything in my control to increase my quality of life. After taking my detox efforts to an entirely new level (I will write a future post about my "Detox Box"), I started handling the Babesia treatment much better. I made it my 24/7 job to be detoxing and taking care of my body at all times. I previously thought I was doing all that I could--but I even took that up to the next level. Big Time. 

This renewed determination and my new best friend, my detox box, paid off! Exactly two months into my fairly aggressive antibiotic/anti-malarial treatment, I returned to my LLMD for a check-up on my progress. I was carefully optimistic...my detox work had lead me to only "herx" during my "on" weeks of treatment. I was still having terribly bad days, but they were occurring less often. I was having more "good" days (relatively speaking) more often that ever. 

I even had the biggest blessing occur around the 4th of July. I had TEN days in a row where I felt well for the most part of each day. And it was not like I was in bed like usual. I went to the lake for three days and then to the beach for seven. I rode the stand-up jet ski for the first time in four years (if you have never ridden one of these it is the most intense workout. Many people can not even get up on it). My body felt like jello for days afterwards, but it was well worth the reward of being able to take another small part of my life back. Piece by piece, I am taking it back. 

I then headed to Seagrove, FL with my boyfriend some of our friends. I continued to have full, active days (if you have Lyme, you count laying on the beach as a high level of activity). I even played bachhi ball most days, and although my former extremely athletic (and overly competitive) and coordinated self came in last place in each game, I did not even care. Just participating was worth it and so much fun. This was the first time that I actually did not care if I won or not. My happiness and joy did not come from the results of the competition, it came from the pure act of playing in itself. There were even two of my boyfriend's friends down there that I hardly ever see and were not aware that I am sick. We hung out with them and they never knew (until the last night when we were at their house and I had a pretty bad seizure...minor setback). 

I felt more like a normal person than I have since I was a child. I still had to stay in sometimes and take a few naps each day, but I did not feel like I was missing out on anything. I even allowed myself to cheat on my super-strict diet (my "cheating" is what most people consider healthy, but still) and even allowed myself some celebratory champagne at dinner. To feel and appear as a 'normal' person would was one of the best blessings I have received. 

I did not have to spend hours getting ready and putting on makeup to cover the green pallor of my face or the brown, sunk in circles under my eyes. I did not have to obsess about making sure I had backup medication on me at all times in case of a flare up or episode. I did not have to fake a smile and try to hide all of the pain inside of me. For those ten days, I was free. And those were the best ten days of my life. I have been fortunate to travel around the world and vacation in some of the most beautiful locals, but to this day that trip to the charming town of Seagrove, FL is the best vacation I have ever been on. 

To feel that inner peace and 'normalcy' (which made me feel high I was so full of endorphins) was God's way of giving me a sneak peak into what the rest of my life will be like. Yes, this journey has been Hell. Yes, I have had many dark moments, lasting months. Yes, this has been the hardest battle of my life and the most mental, physical and spiritual pain I have ever suffered. But I am enduring. I am fighting. And finally, I am starting to win. 

I got to my doctors appointment and they were beyond thrilled at my progress. So much so that the bigwig specialist that runs the clinic that I rarely see (he spends a good deal of time in research now and mostly sees the most severe cases only) came in to see for himself how much I had improved in so little time. The initial Babesia treatment was planned to last eight months. They agreed that my new Babesia treatment estimate will only be four more months at the most, but most likely only two more months. At the least I will be cutting 25% of my Babesia treatment out, and and most I will only have to spend 50% of the initial suggested treatment time. 

Babesia seems to be one of the harder co-infections to get rid of, or so I am told, so I was thrilled with the news. My next treatment will be most likely a six month round of Bartonella protocol followed by a year of maintenance antibiotics to lessen my chances of relapse. My doctors told me I was "WAY over the hump," so naturally I was elated. So much so that I was high for the next few days, floating on cloud nine. They said a little after Christmas, or even before, I will be feeling 85-90% better. This is nothing short of a miracle. 

To add to this miraculous news-induced high, I went to my pelvic pain specialist the next day. He is absolutely my favorite doctor. I have been going to his clinic for almost ten years. His mentor was the first to actually believe that I was sick and diagnose me with all of my pelvic disorders. The second my pelvic pain doctor walked into the room his eyes lit up and welled up with tears. He gave me a hug. He is a very religious man and we speak freely about the impact of God and Christ on our lives, so he praised Jesus with me. Before even looking at my chart...just looking in my eyes, he could tell I was improving. 

Click here to read more in-depth with my pelvic pain struggles (coming soon).

My pelvic pain specialist was amazed at how well I was doing. I was going downhill very rapidly until I started Lyme treatment (which obviously made my downhill slide plummet straight down for a while), but now my pelvic illnesses are starting to heal. Almost a year ago I was able to get off the medicine for my Interstitial Cystitis, something I thought I would take the rest of my life. 

My Pelvic Pain doctor said "Sarah, not only are you walking proof that Lyme exists, but I want to send some of my patients who are in the same boat as you are in to your Lyme doctor."

Following a doctor in Alabama speak openly about Lyme and how treatment has healed me combined with two days of doctors telling me how miraculous my healing has been lately, I was so elated. I eventually crashed and felt incredibly sick for a few weeks, but it was just because my body was producing so much adrenaline (it is currently unable to regulate this) because I was SO happy. But even the crash can't keep me down. 

I am looking Babesia in the face and letting it know that it cannot beat me. Yes, it may pin me down on more occasions than not, but I will never let it keep me there. I will always get back up. And I will conquer it. Soon.

As always, click HERE to follow When Life Hands you Lyme on Facebook. Also click HERE to join the Alabama Lyme Disease Association for additional information on Lyme, co-infections, and Lyme in the South. You can also check them out on our new and improving Web site, alabamalymedisease.org.

The Prayer Quilt

My Healing Prayer Quilt

My Beautiful Prayer Quilt--Front

This is a follow up from the post, "How to Help a Lymie Out."

This quilt was recently sent to me by one of my aunts to bring me healing and peace. She told me the story of how it was made lovingly and with prayers by the Prayers and Squares quilting guild that she is a member of at her church. Their priest blessed this specific quilt at the end of Sunday Service. My Aunt held it up and the priest anointed it and said the prayer. After the service, the congregation come over and tied a knot and said a prayer for me. There was a small sign beside the quilt with my name on it and included the information about my illness, Chronic Lyme Disease. My aunt and uncle also tied knots and said a prayer for my healing.

She sent me the prayer quilt with some knots left untied. Those were for family, friends, and others in my life to tie and pray over. So far I have prayed and tied a knot, as has my boyfriend. I took it to my Integrative Healing Specialist, whom I love and respect with all my heart, and she blessed it every day for one week. She also had other patients that I have bonded with over the years pray over it and tie their own knots for healing and peace. It became so popular at her healing center in Homewood that the patients have inquired into donating to my aunt's church in return for a quilt of their own. My aunt, the continuous adventurer, is on a cross-country road trip and is going to talk to the Prayers and Squares Quilting Guild when she returns home. I will keep you updated on the status.

Close up of knot, Prayer Quilt Front

I plan on having my parents and sisters tie a knot while saying a healing prayer and also having our minister pray over it. I will get more friends and family to tie knots and pray as well--that way the prayers and divine healing powers will keep building and building upon each other and bless me continually.

What I love the most about this blanket--besides the love and well-wishes from my aunt and uncle that is symbolizes--is that you can actually feel the power in the blanket. You can feel the divine blessings and the love that went into making it. You can feel it has been loved and prayed over. You can touch it and feel the warmth of God. I am not sure if I would have felt the divine healing energy of the blanket so strongly if I had received it at the beginning of my treatment.

As I have mentioned in a previous post, My Curse is Also My Blessing, my relationship with God has grown by leaps and bounds in the past year or so. Having my relationship with the Creator stronger than it has ever been, I feel the strength in the prayer blanket like a soft electricity. When I am unwell and am on the couch in my den, I have the healing blanket on me. And when I go to bed at night, I bring it in and put it on top of my duvet. I can feel it protecting me, almost like being wrapped in a cocoon. When I am snuggled up in the blanket, I can feel the love of God and countless others and I feel safe and at peace. I believe with all my heart that the blanket, filled with so much love and prayer, will be a key factor in my healing process.

Prayer Quilt: Back

Here is some information from the Prayers & Squares web site: "Prayers & Squares is an interfaith outreach organization that combines the gift of prayer with the gift of a hand-tied quilt. Unlike many other groups that make quilts for charitable causes, the purpose of Prayers & Squares is not to make and distribute quilts, but to promote prayer through the use of quilts. Our motto is: "It's not about the quilt; it's all about the prayers." 

Each Knot Represents a Prayer

The idea behind these prayer quilts is simple. A heavy thread is used to take stitches through the quilt layers, and the ends are left free to be tied with square knot. As each knot is tied, a silent prayer is said for someone in special need, who then receives the finished quilt.Through Prayers & Squares many quilts have been distributed, each a special gift of love. They have been made for sick babies, for cancer and AIDS patients, for adults and children facing surgery or personal crisis; for many reasons, but each for someone in special need of prayer." 

Prayer Quilt: Back


More about Prayers & Squares, from their web site:

"Can you touch a prayer?
Can you pull it close and feel its comfort?

You can if it's part of a Prayer Quilt from Prayers & Squares, the Prayer Quilt Ministry. It's a simple idea with powerful results, but our Prayer Quilts are more than just colorful, comforting blankets. The warmth they bring comes from the prayers that are tied into each knot. Who gets these wonderful gifts of prayer, and who is making them? You'll want to read our inspirational stories, check out some photos from our members, and then you might want to start your own chapter.

The History of Prayers & Squares

Kody in 1992 and in 1996.

A few ladies started an informal quilting group in 1992 at Hope United Methodist Church in Ranch Bernardo, California, with no other purpose than to have fun making quilts together. Then, a group member's 2-year-old grandson ended up in a coma following heart surgery. His doctors were very pessimistic about Kody's chances for recovery. The ladies decided to make a quilt in vivid primary colors. There was no time to quilt it, so it was tied with perle cotton thread as silent prayers were said for Kody. "There must be a prayer tied in with each knot" someone remarked. The group's first prayer quilt was rushed to the hospital that night.

Even before he was fully conscious, Kody's little hands were touching and fingering the knots on his quilt. After he came out of the coma, the quilt became important in his recovery. In fact, his doctors wrote into his medical chart that the quilt was not to leave his side! Through several subsequent surgeries, whenever he needed another needle stick or a scary test, that quilt was right with him, providing comfort and strength for many years. We are sorry to report that Kody died suddenly at age 14 in November, 2003. Our prayers are with his godmother, Carolyn Wright and his grandmother, Reva Eggleston. Both of these ladies were part of the founding Prayers & Squares group." -The Prayers and Squares web site (click this link to visit now).   

Isolation

As a (very) amateur blogger, I have figured out how to track where my page views are coming from. The most googled phrases that send people to my page are about Isolation. The searches mostly include Lyme disease, isolation, needing companionship, am I alone?, etc. So I thought I would write a quick post about how Lyme causes isolation as well as ways to fight it.

How Lyme Disease Causes Isolation:

1. Unfortunately, some people will not understand you and some people will not believe you. Lyme is in most cases an invisible illness, so not being able to see that you are sick makes it difficult for some. How many times have you heard, "well, you don't look sick!"? Those who are not supportive and not willing to try and understand may be worth checking off your list of good friends. They are not bad people (in most cases), just not the right type of person to be on your "support team."

2. The disease itself. I cannot tell you how many times I have been lonely and feeling isolated and the phone rings. It is a friend or family member checking on me. But I feel too sick to answer the phone. Or am in too much pain to text back. Or am too overwhelmed to even respond to a facebook message. So, after a while, people stop calling. Or if they ask you to go out, and you say you cannot because you are sick, they might eventually stop asking after hearing so many no's.

Here is a great article on why those with Lyme disease become estranged...just click here.


Ways to Fight It:

1. Do not be embarrassed to have Lyme disease or to be sick. My pride got in the way and I tried to hide my illness, which is the exact opposite thing to do. You do not have to shout it from the rooftops, but it does help to let everyone in your life know. And also, give them some information..do not assume they are going to do copious amounts of research to understand what you are going through. Here is a good link from one of my favorite sites, tiredoflyme.com: So you have a friend or family going through Lyme disease, a guide to their struggle (click the link).
On a side note tiredoflyme.com is an amazing site. It explains Lyme and symptoms in brief, easy to read articles. They use understandable terms and it does a great job covering so many aspects of Lyme disease. I strongly suggest you check it out!

2. Find a support group. I have found facebook to be the best. Just search the word "Lyme" and your city or state. Joining the Alabama Lyme Disease association was one of the best decisions I have ever made. Or just search for Lyme Groups on facebook...there are more than you would ever guess. You can post questions, suggest answers to other Lymie's questions, or just say hello. Pretty soon you will discover an entire new group of Lymie friends. I count some of my closest friends as the Lymies in my support group. I have shared, easily, things with them that I would never be able to tell anyone else. We meet every few months, I can grab tea with someone when I am feeling up to it, and it is an amazing resource. I have learned so much from others who have gone through what I am going through. And since Lyme is so difficult to explain to others, it is much easier to vent to someone who understands exactly how you feel. And there is comfort in knowing you are not alone!

3. Reach out. Recently I was having an anxiety attack so intense that I was ready to go to the ER, knowing that they would then put me in the psych ward. Feeling so horrible took away any since of pride, and I wrote on facebook, "Asking for prayers for peace and healing." I had almost 100 people respond. I felt so overwhelmed with love and compassion, not to mention the power of prayer! Do not be afraid to text your close friends that you are needing prayers or positive thoughts. They most likely want to help you but do not know how, so they will be thrilled to help.

4. Use your good days to be with or talk to friends. You have to be very careful on this one not to over do it, but if you are having a good day reach out and ask a friend to come over and watch a movie. Or grab tea. Or go on a walk. Even if it is not someone you have talked to in a while, a good friend will jump at the opportunity to see you. Or, if you do not feel well enough to have company, just call someone to say hello and have a 15 minute phone conversation.

It is Hard to Help People With Lyme:

Can I pick up dinner for you? Would you like to go grab a drink? Do you want to go sit by the pool?

No, you probably cannot pick up dinner for me because of my strict diet. No, I cannot drink alcohol and do not feel well enough to meet you at a bar and drink water. Vitamin D is good for me, but I am too exhausted to get out of bed to go sit by the pool.

See what I mean? Stay tuned for my next post about how to help people who have Lyme Disease. Click here to read "How to Help A Lymie Out."

Good Day=Bad Thing?

If you are undergoing treatment for Lyme you know what I'm talking about when I refer to "good day(s)" (sometimes just hours). When you begin treatment for Lyme, you immediately feel worse than you did pre-treatment. And when I say worse, the word torturous comes to mind. But then, every once in a while, you will experience a high more intense than anything you have ever experienced: a good day.

A good day means freedom. You feel unshackled for a small space of time, as if God is giving you a 'time out' (I'm saying that in sports terms, not in parenting terms). You still feel sick, have no energy, and are not your old self. However, you feel so much better that you can actually breathe and feel your muscles relax. You can actually enjoy what you are doing..even the most mundane activities are suddenly fun.

My laughter woke me up yesterday morning. I woke up still smiling and trying to remember if I had a particularly humerus dream. And then it hit me: I felt free. I was laughing because my subconscious had realized that my body and spirit where given a break from battle while I was sleeping. Sometimes this break will only last a few hours, so I use to try and cram as much as I could into the time that I felt good. This is not a good idea--it causes you to crash and then feel worse than you did before your good day.

I have learned to relish these good days and see them as blessings. However, this is a hard lesson to learn.

Good days used to be my curse. I would feel great one day and the next would feel horrible again. It was like someone was teasing me, temporarily releasing me only to shackle me once more...torturing me by changing what was 'normal' for me. I was accustomed to feeling horrible each day, so it was not terribly depressing when I woke up feeling horrible. But giving me a break from the anxiety and pain then quickly taking that freedom away made everything seem so dark. The days after my good day were always the times I was most depressed and withdrawn, feeling cheated and sorry for myself. The good days give you something to compare your normal (bad days) to. It unfortunately makes you realize how sick you really are.

Now good days have become a blessing after altering my way of looking at the situation; a little reconditioning of my thought process. This morning I woke up feeling bad again, but instead of it making me depressed, I was joyful still from yesterday.

So to answer the question, "Can a good day be a bad thing?"...Yes, if you let it be. But by changing your mindset and accepting the good day as a blessing of temporary freedom, a good day will only be a good thing. Now I let my good days be inspirations to keep fighting. They serve as reminders of how amazing it will feel to get my health back, so I enter the bad day ready to battle the spirochetes and parasites in order to regain my health as soon as possible.

Good days are God's gift of hope to us: a brief glimpse of what our future will look like. Good days keep us fighting and knowing that healing is occurring in our bodies.

Lyme in Alabama

It seems as if at least once a week I hear of someone who is suffering and their doctor told them "there is no Lyme Disease in Alabama."

This is an absolutely false statement. I am proof that Lyme exists in Alabama. My family is proof--my father, my sister. If you would like more proof, click on the Alabama Lyme Disease's facebook page here.

If you are sick and your doctor tells you there is no such thing as Lyme disease in Alabama, find another doctor immediately. Lyme is in Alabama, infecting dogs, horses, humans and more. You must be proactive and keep searching until you find an answer.

Sorry for the short post...I just want everyone who reads this to know that there is Lyme in Alabama.