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).   

How to Help a Lymie Out

My last post on Isolation briefly touched on the topic of how it is difficult to help someone who has Lyme Disease. This post will include a few tips on how to help out a Lymie along with listing and explaining the best presents I have received throughout this journey to wellness. This blog is written from my personal point of view of going through Lyme myself and watching my sister and father battle it, too. If your friend has Lyme, talk to them about this, their preferences may be different than my own observations. One of my favorite Lyme sites has a great article, "So You Know Someone With Lyme Disease--A Guide To Understanding Their Struggle,"that can help you understand how helping someone with Lyme can be difficult.

Tips to Help Loved Ones Dealing With Lyme Disease:

1. Try to understand, but know that you cannot. Lyme disease differs vastly from one patient to another, so methods of helping Lymies vary as much as the disease does itself. Be patient and kind. Let them know that you are there for them. Show them unconditional love and let them know that you will not allow this disease to change your relationship, unless to strengthen your bond. Do not tell them, "Well, you don't look sick" or try to cheer them up by asking, "Are you going back to work soon?"

2. Believe them. Most Lyme patients have been told everything negative about their disease from doctors, family, the government, insurance, and friends. Some common themes: your disease is not real, it is all in your head, you are depressed, you need to get over it, Lyme does not exist in the South, you need to tough it out, if you just pushed through this you would feel better..., etc. Just letting them know that you believe and support their diagnosis and have their back will do wonders. Also, if you feel so inclined, feel free to put anyone in their place for talking badly about your friend being sick. I know from personal experience that hearing that your 'friends' are telling your other friends that you are not really sick is an incredibly scaring experience that is Hell to go through. See my previous blog, My Private Struggle, for a little more insight into the story.

3. Spend a few minutes to research their disease. Their is an overwhelming amount of information on Chronic Lyme Disease out there, but do not let that stop you. Focus on symptoms of chronic lyme, learn what a "herx" (Jarisch-Herxheimer Reaction) is, learn about the lyme diet (gluten-free, sugar-free, anti-inflammatory, etc) and simple home remedies that can make the patient more comfortable. Just learning the Lyme lingo will show how much you care. Do not know where to start? Join informative facebook pages like Alabama Lyme Disease and When Life Hands You Lyme. A great place to start out for simple and informative research is one of my favorite lyme sites, Tired of Lyme (tiredoflyme.com). It is not overly "medical" and has articles that are short and easy to read. It will give you a much better understanding of this disease, from all angles.

4. Send them uplifting messages, bible verses, or words of encouragement. This can be done quickly on facebook or email. Or you can text it to the Lymie. I especially loved the ones that were mailed to me...I tape them on my mirrors and other prominent areas in my home. That way I am surrounded by positivity at all times and reminded that this disease is not going to isolate me. It reminds me that I have people cheering for me and supporting me through this journey. Here is a post with some of the uplifting messages I have received (click here).

5. Do not give up on them. You will probably ask your Lymie friend or relative to go grab a drink, get lunch, or even get coffee/tea. They may say "no" every time you ask, even if you are persistent. But do not stop asking. Instead, tailor your questions to suit the Lymie better. Ask if you can bring by some herbal tea for us to share. Or bring over dinner (gluten-free, please!) and a movie. Let them know you are planning on coming over in your pajamas. We have a lot of pride--I often turn people down from visiting because I am in my sweats and my house is a mess (something I am working on getting over). Let them know that you do not judge and you accept and love them as they are. Knowing you are coming over in your knock-around clothes makes us feel better about our appearance. It takes a long time to look put-together when you have Lyme, and knowing that you will be in your PJ's, too, makes us feel more comfortable. Like we are finally not the odd man out.

6. Help out their primary caretaker. Be it their husband, wife, child, boyfriend, girlfriend, sibling or roommate, the primary caretaker is most likely spread very thin and under a lot of stress. Ask to take them out to dinner sometime--they need time to act "normal," too. One of the best presents given to my mother when she was in the crux of nursing my father back to health during his battle with Lyme was a spa package. She was able to get pampered and relax. And when she returned home, she was rejuvenated and ready to lovingly take care of my father again. Being a caretaker is often a thankless job, so if you are on the outside looking in, be sure to express to the caregiver how much you appreciate them taking care of your loved one. In most cases they are stretched way too thin but will never let the Lymie under their care see it, so they, too, often suffer with frustration in silence. Sometimes they just need an outlet to vent to. Helping the caretaker will also help the Lymie.

7. If you are a primary caretaker, make sure to take time for yourself. The pressure and stress can make you sick, and when you are sick, your ability to take care of another is depleted. Always make sure to take care of yourself first so you can be your best self to take care of the Lymie in your life. I know this is hard to do and can sound counter-intuitive, but it is so important to take care of yourself first and then take care of your "patient." It works out much better in the long run. Also, do not feel guilty about leaving the house every once in a while to do something fun with your non-sick friends. We understand that you want to live your life just as badly as we do and sometimes we feel guilty for holding you back. So go out and have fun when you get the chance.

8. Check on them and let them know no response is needed. Feeling insanely overwhelmed is a symptom of Lyme disease..I remember when I first announced it on facebook and started blogging I was overwhelmed with loving messages, texts, and phone calls. I recall feeling so much love and support but also feeling anxiously overwhelmed...I needed to respond to all of these people who took the time to send me words of encouragement, but sadly that simple task seemed more like a mountain than a mole hill in the shape I was in at the time. The messages that helped me the most were encouraging and uplifting, but the writer let me know the message was just to let me know that they were thinking of me and that they did not require a response. It took the pressure off of me and allowed me to just sit back and appreciate the love that was being shown to me. I often get texts from friends saying, "You don't have to text me back. Just letting you know that I love you and am praying for you. Let me know if and when you feel up to talking or hanging out, but I understand if that cannot be anytime soon. Love you and just wanted to let you know that I was thinking about you."

9. Help with Errands. When you have Lyme disease, the simple task of picking up a few things from the grocery store is at times impossible. A good way to help would be to say, "Hey--I'm running errands on Sunday and wanted to see if you needed me to pick you up anything. I will be passing your pharmacy and going to the grocery store anyway, so I decided to see if you needed anything while I am out." When people ask me if they can do this for me, it is a God-send. I do not want my disease to put anyone else out. Sometimes I feel that I have 'maxed-out' my favors from certain people (although they assure me this is not the case), so it is hard to be constantly asking for help. When you make it sound like its not a big deal--like you are not making a special trip or going out of your way--it is easier for us to accept the generous help that you offer. It is easier to accept help when someone offers you something specific, not just a generalized "let me know what I can do to help you," because in my case, I feel guilty assigning you tasks to do for me.

10. Give (appropriate) Gifts. While sending an Edible Arrangement is a very sweet idea, it is not a great gift to send a Lymie. If your friend with Lyme is anything like me, I can be strong and stick to my diet unless the "bad" food is put directly under my nose. On the days that I do not possess as much willpower, I will end up cheating on my diet if the "cheat" food is right there in front of me and I pay for it by feeling sick afterwards. Great gifts are also relaxing or healing gifts. Think herbal teas, rice packs (to heat up in the microwave for pain), relaxation or guided imagery CDs, prayer cards, inspirational books (something that only requires a page or two of reading a day...most lymies memories aren't up to par and reading more than a few pages is almost impossible), or a plant that is easy to take care of, like lucky bamboo. Gardening is very therapeutic to those with chronic illness--being close to nature and caring for a living being created by God is very cathartic. Give them something that requires at least a little effort to keep it alive, but not too much so that the plant does not survive.
Another gift idea would be to offer to pitch in for their supplements one month. But you have to have the right kind of relationship for that--you don't want the Lyme to feel like a charity case. If you are financially able and feel comfortable discussing the topic, ask your Lyme friend if you can help with a portion of their supplements for that month or next month. Supplements and vitamins are so important to help protect our bodies from long-term treatment...but the cost really does add up. Taking some financial stress away (even in the smallest amount) does wonders for a Lymie. Something as small as $5 or $10 to add to their medical fund is a great way to show you care. And in doing so you are helping them heal when they use the supplements. Just be sure to say "help pay for part of your supplements" unless you are prepared to foot a $200-$300 bill.

11. Donate to their Cause. Find out if your friend with Lyme is tied to any particular Lyme advocacy or support group. In my case, I would love for my friends to donate money to the Alabama Lyme Disease Association. Many Lymies have a Go-Fund me page--Help For Ian is an excellent example of a great cause (one that is close to my heart) to donate to. Here is a quick blurb from Ian's story, "Ian contracted Lyme Disease (at the age of 7) in December 2010  and, after seeing 25 doctors and specialists in 3 states, he was finally diagnosed in June 2011.  We had to travel over 1,000 miles to find a brilliant and compassionate Lyme Literate MD who would diagnose and treat him." These Go-Fund-Me pages are a great way for Lymies to be able to afford the immense cost of treatment, their medicine, and their vitamins/supplements. The smallest donation, even $5, will make a significant impact on the life of the Lymie you are donating to. Financial stress can make the healing process for Lyme disease take so much longer. 

12. Put them on the prayer list at church. Then tell them. I have learned through this disease the intense and divine healing that comes from the power of prayer. Especially having so many prayers being said in your name by so many. It is a wonderful, divine, and healing gift to give someone and a great way to show that you care.

Click My Prayer Quilt post to read about the best gift I have received during my battle.

Guest Blog: A lifelong battle with JRA & Lyme

I would like to welcome my first guest blogger and someone very dear to me, my sister Julia. She is one of the toughest fighters I know...so strong and so beautiful that it is hard to believe that she is sick. Without further adieu, here is Julia... 

I have been very hesitant to write a post for Sarah's blog. It has been a hard choice for me because I don't want to seem like I'm whining or wanting people to feel sorry for me. Especially since I am in nursing school and see people everyday that are so much sicker than I am so I realize in a lot of ways I am very fortunate.

Julia Israel, Lyme warrior and Juvenile Rheumatoid Arthritis Spokesperson

I'll start out with my story from the beginning. I was diagnosed with Juvenile Rheumatoid Arthritis at 2.5 years old. My parents had noticed that my finger was swollen but they just assumed I'd had a normal toddler accident. However, one day my dad was tossing me up in the air and when he caught me I started screaming. My parents of course were concerned I'd broken a bone or pulled something out of place, but I explained to them that Daddy straightened the arm that's "not supposed to straighten".  Then they realized that I was holding my arm at a 90 degree angle up against my chest/stomach all the time. After several weeks of testing, my parents were told I had Juvenile Rheumatoid Arthritis (JRA). I grew up trying a wide variety of treatments; there were no pediatric rheumatologists in the state of Alabama and the medicines weren't as good as they are now so we tried everything that was out there. 

My doctor told me there was nothing they could do for my arm- that it would always be bent at a right angle and that I should go ahead and learn to use my left hand- which I did, which always tricked up pitchers in 2-3rd grade softball ;). I wore a metal brace for half of the day and also when I slept in hopes that it would keep my arm from retracting further. My parents, being the incredible people they are, decided that they were not going to give up. I went to a physical therapist who I hated because she "hurt" me to help me, but she was incredibly effective and changed my life. 

With Angie, we would do strengthening and stretching exercises for my arm, then, with several assistants, pull my arm as straight as she could and then cast it as quickly as possible. We would go back several weeks later, remove the old cast, straighten the arm a little more, and recast it. This was very painful but worked so well that my arm was nearly completely straight after a few months. However, one day in church my arm completely retracted back into the 90 degree angle and we had to start all over. However, after this time it worked! It was amazing and allowed me to live a much more normal life. During my elementary school years, I also developed a form of arthritis in the eye called iritis, which can lead to blindness if untreated, but I had no long term effects after treatment with steroids.

At some point during all of this, more joints became involved including my knees, ankle, jaw, hip, and shoulder. My knee was swelling to such an extreme degree that in 7th grade, the doctor removed some synovial tissue and cleared out some cartilage in an effort to keep me from coming to the office every couple of weeks to get it drained. This period of my life was an incredibly difficult one. I was in constant, excruciating pain but didn't want to say anything because I didn't want to seem whiny or be seen as "different". 

I was so sick and anemic that I looked like a ghost. We found an old picture of me on a skiing trip from 7th grade and my face is honestly only about one shade darker than the snow behind me. My parents would have to wake me up before my sisters in order for me to get stretched out enough (especially my legs) that I was able to leave bed. I wore leg braces that kept my leg straight while I slept, but it was so painful I'd always take them off in the night and wake up with knees I couldn't straighten past 90-100 degrees. 

Even with this, I continued playing sports the best I could. In 7th grade basketball I would often come in just to shoot some threes at the end of the quarter or half, but one game I remember making several shots in a row and the opposing coach yelling, "how can you not guard her?? I can run backwards faster than she can run!" It really hurt my feelings at the time because I was very self-conscious of my obvious limp, but I tried to think of it as a compliment. 

However, feeling so alone left me in a very dark place and I became very depressed. Feeling alone and misunderstood are two powerfully painful feelings and unfortunately, my parents didn't realize the high incidence of depression among people, especially adolescents, with chronic diseases, so I suffered for a long time before my parents realized what a dark place I was in and got me professional help.

In high school I really felt a lot better than I did in junior high. We had a new pediatric rheumatologist at Children's in Birmingham, and she put me on Vioxx, methotrexate, and Enbrel, a shot I gave myself 2 times per week for 10 or 11 years. I still felt nearly constant pain, but I didn't have so much swelling and was able to participate in sports like I wanted. 

I began working on a campaign with the Arthritis Foundation of Alabama to raise funds to bring a pediatric rheumatologist to the state of Alabama (my 7th grade doctor left after 2 years or so). Along with two other children who had much more severe arthritis than I, we made a video to raise awareness that "Kids Get Arthritis, Too!" and to raise money for an endowment to hire some pediatric rheumatologists. I spoke at various events (oh how i hate public speaking!) However, after all our hard work we raised several million dollars, hired 2 pediatric rheumatologists, and built a state of the art facility, one of the bests in the nation. This is truly my proudest accomplishment to date.

Once I started college though, things went downhill again. I started  flaring, my knees became hugely swollen again, once so bad my 5'3" sister and 5'2" mother had to carry me up two flights of stairs to my dorm and then I had to depend on my roommate to help me get dressed. I started seeing a new rheumatologist who I really liked and respected and he changed up my treatment regimen to once a month infusions, in addition to the meloxicam, plaquenil, and the maximum dosage of methotrexate that I had been on for 10 years. 

He continued draining my knee and injecting it with steroids, but every couple of months I was back with the same problem. I also started having jaw problems and had to get my TMJ joint injected with steroids (not pleasant). Finally, one day I came in to the rheumatologist and had so much inflammation spread all throughout my body, my doctor decided to run an infusion of steroids with my infusion for my JRA. I got home and literally didn't leave the bed or eat for 3 days.

After this last incident, my parents and I decided we had to try something else. My sister had been diagnosed with chronic Lyme disease and the doctor was interested in seeing me since he had successfully treated and cured several patients diagnosed with JRA. My rheumatologist thought I was insane, but I had one more infusion left to try before I was out of options with JRA meds, so we figured why not give this Lyme doctor a shot. 

I went and saw him, stopped taking all of my arthritis medications, and the swelling in my joints went away! It has almost been a full year that I have been off my arthritis medicines and I have had minimal swelling- avoiding draining my joints and avoiding damaging steroid injections.  The doctor also told me NO steroids! The steroids actually cause the Lyme spirochetes to go into overdrive- hence why I got so sick after steroid infusions. 

It sounds really strange to most people, but I was thrilled to have Lyme disease. JRA is a life-long condition that you can only try to improve symptoms, but there's not a cure. With Lyme disease, even though its a long road and some people never get 100% better, I am just so happy to be able to get better at all. I was telling my dad the other day that even if I only got 25% better than I've been my whole life I'd be thrilled!

I'm nearing a year of treatment coming up this fall and still have several years to go. It has been a really, really hard road and besides the lack of intense inflammation, I actually feel worse than I did while on JRA treatments. The doctor told me this is to be expected because the Lyme bacteria and co-existing infections fight back when they are attacked with antibiotics.

I think where I am again, where I keep finding myself, is in a very low place because I feel alone, isolated, and like no one understands me. I am in an accelerated degree masters nursing program and every single day is such a struggle for me. However, I don't want to complain or be a "Debbie downer" so I always try to keep a smile on my face and pretend everything is okay. I think this is part of my problem with feeling like my friends don't understand me- I usually don't look sick or act sick, but it's really just because I'm trying to hide it and power through, just like I always have. 

Pictured here with her wonderful fiance, Julia looks more super-model than super-sick, which is why so many have no clue how torturous this disease has been to her during the span of her entire life. -Sarah

I never wanted arthritis to stop me and I'm not going to let Lyme stop me. I just pray for more understanding from my peers. It is hard for people that are healthy to understand though. Often I can sleep anywhere from 14-20 hours without waking up and then require a nap later. I sometimes take hot baths 3 times a day in an effort to curb my pain. I keep pain pills with me to get through the days. I sit in the dark for hours because I suddenly get the worst migraines. It really is a lonely disease, as I believe most chronic diseases are. I feel like I've missed out on so many experiences and friendships because of my life-long struggle with JRA and Lyme disease. There was a whole year in college when I hardly left the bed except to go to class occasionally and I feel like a lost a lot of great friends and experiences I could have had. 

Because I don't really share much about how I'm really feeling, I sometimes feel like I'm right back in junior high again, completely misunderstood in how much I am really struggling because of these diseases. I don't want people to feel sorry for me, I want people to realize the situation I'm in and just care and show compassion more than anything else.

Luckily, I have an amazing fiancé that helps support me, especially through this spring which was the worst I've felt in my entire life. He cooked, he cleaned my apartment, he looked after our dog, he went grocery shopping, etc. He has been truly amazing and has made it possible for me to make it through one year of this degree and has kept me laughing, even when I feel my worst. 

I just want to share my story to spread awareness and also to help the friends and families of a person with chronic Lyme disease. Know this is an incredibly lonely, dark disease and that your friend/family member with the disease needs your support and company at times too; make that phone call or text, invite them to do something, offer to bring a meal when they can't get out of bed, simply let them know you're thinking of them! That always does me wonders- even if I want to be alone all day, just knowing someone is thinking about me and caring for me is a huge booster.

As I start a new school year, I am extremely anxious about how my body will handle it, as my body completely rebelled against the insane hours of the nursing program when I got costochondritis, constant upper airway and throat infections, and stomach bugs. I am really terrified about starting school again, but I am going to continue fighting as hard as I possibly can. I'll need all the prayers I can get.

Finally, another huge worry I have that feels like a constant burden is that until I get better, I can't be the fiancé/wife to Cory I want to be and I can't be the super mom I want to be one day. Cory helps me so much and is so amazing to me and I just want to give back to him all he has given me.

I want to close this post by saying I know how incredibly fortunate I am. I've had parents that never gave up on getting me better, parents that never let me quit or believe I couldn't do something because of my JRA, two totally compassionate sisters willing to do anything to make me feel better, and a fiancé that I love beyond belief who has been so patient with me through the pain, the tears, the mood swings, the fatigue. I have been so, so blessed in so many ways, and I cannot wait to truly take on this world once I am better.

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.

Please Help!

If you are living in the South, please join the Alabama Lyme Disease Association's facebook page by clicking here: Alabama Lyme Disease. If you know someone in our state living with Lyme, please send them to the page. It provides great local information about Lyme disease in the South, most specifically in Alabama. It is so important for us Lymies to join together to fight this battle! As difficult as it is to see that others in our state are suffering, I find it very cathartic knowing that I am not fighting this battle alone.

DO NOT let anyone tell you that "there is no such thing as Lyme in Alabama..."! This page proves that myth to be incorrect, although I cannot tell you how many doctors have falsely told me otherwise.

Spreading awareness and hope about Lyme disease can be one of the biggest ways you can make a difference. If you want to check out the non-profit ALDA's web site, click here: http://www.alabamalymedisease.org/

Thank you for taking the time to click on the page and join our local Lyme community. The ALDA is trying to create a database of all Alabamian's who have had Lyme for research and funding purposes.

Sending love and healing prayer to all Lymies and their friends and family,
Sarah

Docs Say the Darndest Things

I have some incredible doctors in Alabama and in other states. However, I have gone through my fare share of narrow-minded doctors. For years I would go to a doctor and leave in tears (most of the time able to wait until I got into the car before I lost it). Now I have realized that no one knows my body like I do, regardless of medical experience, and not to listen to doctors who let their biases get in the way of medicine. And it is not just Western medicine...I have experienced the same nonsense with some non-traditional practitioners, too. Moral of the story? Please do not let what one doctor says make you upset. Doctors are not perfect and you are in charge of your own health...if what a doctor tells you offends you, find another doctor. Always get a second opinion. And third, fourth, fifth, and sixth when needed. Never give up.

Doctor: "I would say that is just a beer gut. Cut back on the drinking." (regarding extreme stomach distention)
Actuality: Fluid was escaping into my abdomen because of abdominal muscle separation due to three abdominal surgeries (plus I do not drink)

Doctor: "Listen to me. I am a woman. You are a woman. Women get cramps. You have to get over it just like the rest of us. You need to learn to tough things out."
Actuality: Endometriosis, Interstitial Cystitis, Vestibulitis, Complex Ovarian Cysts, Pelvic Congestion, Pelvic Floor Muscle Dysfunction, Appendix Stones (and three abdominal laproscopies)

Doctor(s): "Most college students gain weight. Try working out a little more."
Actuality: Hypothyroidism

Doctor(s): "I do not think you should get tested for Lyme. Lyme doctors take advantage of people who are chronically ill and desperate for a cure. They get a lot of money out of you"; "Lyme Disease does not exist in Alabama"; "Getting tested is not a good idea. It usually produces a false positive then people convince themselves they are sick and act that way their entire life"; "Have you even been in the woods before?!?"
Actuality: I have Lyme disease and several co-infections, including Babesia (and when I am in a healthy state my two favorite things to do are hiking and climbing)

Acupuncturist: "The reason you are sick is because you are poisoning your body with medicine. You need to stop taking your medicine immediately."
Actuality: I did not stop taking my medicine, that would have been irresponsible and a lot of my medicine would need to be titrated off to avoid intense adverse effects.

Acupuncturist: "Your body is rebelling against you. You are sick because you stifled your femininity by entering the masculine roll of playing sports growing up and in high school. Your female reproductive system is refusing to work properly because of the masculine-based decisions you made."
Actuality: I will not even get into this one but she put back the feminist movement a hundred years


Other Family Members with Lyme:

Doctor: "It is most likely just gas pain." (regarding diffuse stomach pains)
Actuality: A Lyme co-infection that causes diffuse stomach pains

Doctor: "Just start taking Folic Acid and you will be fine" (regarding sleeping over 12 hours every day and still feeling exhausted)
Actuality: The major side-effect of the medication she was on was extreme fatigue...which went away once she stopped taking the medicine that particular doctor prescribed

Doctor: "Has your dad been hunting in the Northeast a lot? Because you cannot get Lyme down here. We are not going to test you." (regarding getting tested after our father's diagnosis)
Actuality: She has chronic Lyme Disease and several co-infections


These are just a few of many, many examples that I have witnessed within my own family. I will add more later. Do you have some crazy comments from doctors that you would like to share? Send me a message on facebook by clicking here and I will add it to the post.

Other people's Experiences:

-When Sean was a little baby I had many questions about vaccinations. This one vaccine was all over the news and I had some questions about it. After all, a crazy doctor had scared us parents after publishing an article regarding a link to this vaccine and autism. I made it very clear to the doc that I am for vaccines but had issues with this particular one. After only 3 minutes of "discussions" he turned to me in a stern voice and said, "I have over 300 patients in my practice, do you think you are a better parent or love your child more than the others do?". He then went off on me as to what kind of a parent I was. I was in so much shock that I couldn't defend myself. We left that clinic and found a new pediatrician who came up with a great vaccination schedule for us. (This example is not about Lyme but shows how doctors can bully patients into believing something...luckily he couldn't bully this patient!) 

-We were told that, because our 7 year old son was probably just 'faking' all of his horrible symptoms, "we'd be laughing about the whole thing as we got 10 minutes down the road". It's been close to 3 years now and we're still not laughing... 

Escaping Within Myself

Sorry it has been so long since my last blog post--I have had a rough couple of weeks. For now I do not feel comfortable blogging during the really bad times. For one, my brain fog simply would make the blog post difficult to understand but more importantly I have to admit that I fight to find optimism on those days, and there is a Lyme-induced dark side of myself that is difficult to share completely just yet.

Sometimes the darkness is all-consuming...I do not want to take my supplements (I dare not skip my medicine), I do not want to detox, and I do not want to do anything to take care of myself. There are certain days that are so bad that the "I do not want to" turns into I simply cannot. I cannot take care of myself properly, much less watch television (books at this point are out of the question) or find any other type of distraction. Time seems to hold still at times and then move rapidly at others. I just stare at the ceiling and my body instinctively goes semi-comatose so that I am not fully aware of what is going on--I am just floating, unattached from the world, waiting for the herx or flare up to loosen its grip around my neck. 

A few times it has gotten so bad that my body has become paralyzed and I feel this extraordinary pull to let go. I fight to hang on to consciousness due to fear, but I wonder what would happen if I were to let go. The feeling pulling me is so warm and calming, as if I were floating on water and holding on to a boat with one hand, but with every fiber of my being begging me to release. I have only felt this feeling a few times aside from these 'non-epileptic seizures'...a handful of times during intense meditation and once during a cranio-sacral therapy at Miraval in Arizona. 

Those really bad days, when a herx has completely taken over my body and I do not know when I will be released--hours, days, weeks--the only thing I have found to do when things are this dire is to escape within myself. I am not sure if it is a good thing or a bad thing, but at that point I am forced to just listen to my body. I feel so incredibly fragile, so meek, that I physically and mentally escape within my self for protection and thus I become a temporary shell of my former self. During these times I do not want to talk to anyone or see anyone--I just need to be alone until it is safe to come out again. 

Once I come to a better acceptance of these times, I will write more about the darkness that can envelop you while going through treatment. The darkness far trumps any type of physical pain I have ever felt. For some reason it is a necessary Evil that comes with long-term treatment for Chronic Lyme Disease. 

All of this is hard for me to admit. I want to tell you that I am always strong; always optimistic. Continuously fighting and eternally positive in my outlook. But this disease attacks your brain and at times it feels like the devil is closer to me than God--whispering in my ear, convincing me that this Hell will never end and that I have been utterly abandoned. 

These are the times I have to eventually force myself to be thankful in advance for God healing me. I have found Joel Osteen  and the Jesus Calling: Enjoying Peace in His Presence daily devotional by Sarah Young to be spiritually healing during these times. It lifts me up enough for me to catch my breath and realize that I am one of God's children and for Him nothing is impossible. Gradually, with a lot of prayer and hard work, I am able to settle back in and brace myself to continue this fight with a healthy state of mind and my heart at peace. 

Please Note: I am not giving advice on what to do when you are having a bad herxheimer reaction. I will never give medical advice in this blog and have no medical background. I am simply being honest and sharing my experience to hopefully let those without Lyme understand, to let those going through treatment know that they are not alone, and to prepare those who are about to begin treatment. Everything I write is from my own personal experience unless otherwise expressed. Please note that I am not a doctor and no two cases of Lyme are the same.

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