If this is your first time visiting, you may want to begin by reading "In a Nutshell", following up with "When I Really Realized That Something Wasn't Right", and finally "The Team Persy Manual".
One question: how many times have you left your home in the last 3 weeks? I think I've left mine 5 times. Always to return home, back to my bed.
Today was my monthly f/u (follow up) with my doctor. Given how hard I've crashed and how badly I'm reacting to pretty much everything in my environment, we're discontinuing all treatment for Lyme & Co and instead focusing on MCS (Multiple Chemical Sensitivities) and basic immune support. You may be wondering what exactly this means, and you can read about it here, but briefly:
"Multiple Chemical Sensitivity; in broad terms it means an unusually severe sensitivity or allergy-like reaction to many different kinds of pollutants including solvents, VOC's (Volatile Organic Compounds), perfumes, petrol, diesel, smoke, "chemicals" in general and often encompasses problems with regard to pollen, house dust mites, and pet fur & dander."
As I stated in an earlier post, I began crashing as soon as I landed 3 weeks ago. I have yet to really get my feet back under me. If you've ever had an asthma attack, or witnessed one for that matter, you can imagine the reactions I've had to simple things such as candles, perfumes, animals, soaps, cleaning products, bug sprays, etc. Some of those reactions are milder than others. Many of those reactions are newer in the sense that I didn't react to them prior to going to San Diego but I certainly do now.
It appears I may be regenerating from Lyme & Co (we've been wondering for the last few months) but it's too difficult to tell because I'm too toxic.
Here's the catch with detoxing - as long as I'm living in a toxic environment it's going to be a waste of time, energy and money to focus on hard-core detoxing.
Anyone in my life knows how sick I've been over the years. It's heartbreaking to know that there is someone who is far more ill than I. She's literally hanging on by the scratchmarks of her nails.
In efforts to help Elizabeth get life-saving treatment, I decided to share her story here, as taken from her bookpage here.
"Note to Reader Foreword (from Elizabeth's book)
Dear Reader,
I don’t know if there is really a way for anyone to understand the depths of pain and suffering from which this work of Elizabeth’s springs. As one who has witnessed this firsthand, being physically with her in the day-to-day more than anyone else, it’s still unfathomable to me what she goes through. The reality of her minute-to-minute existence is far too unbelievable to wrap the mind around. Most of the writing was done in a very dark, cold room in complete silence. Much was done with the computer on Elizabeth’s lap, with her typing with her eyes closed, as the light even from the computer screen was too much, too painful. All of it was done with a continual headache/migraine, as those only change in level of severity. She worked in small increments in between excruciating, unbearable physical pain and exhaustion, and moments of reprieve where the physical pain/symptoms and migraines were “bearable enough.”
Most of us will never know the loneliness that she experiences or the fear as she watches uncontrollable things happen to her body each day. Even though I am with her as often as possible, and she is never out of my thoughts or my heart, most of this she suffers completely alone, except for her constant companion and angel of God, Symon.
Yet in this existence, that is impossible to call a life, she has never wavered in her faith. She has sought, screamed, challenged, asked tough questions, and been candid in her queries, and also candid in all of what she experiences. However, she has never abandoned her faith. Additionally, she has always been there to support those she loves in spite of the constant abandonment, with words of faith, encouragement, love, and wisdom, always giving beyond her strength and capabilities and often paying a huge price of increased physical pain and other symptoms for days or weeks, as her own health deteriorates.
To me, she is the epitome of what God wants for all of us. To love where there is no evidence, give when there’s nothing left and believe where there is nothing left to hold onto except “the scratch marks our nails left behind.”
Elizabeth, you are and will always be a daughter, very dear friend, and mentor to me. I congratulate you on completing this amazing project, this work of raw faith. Your perseverance is astounding and awe- inspiring. To witness the tortures you live every second of every day, the loneliness, the travesty, and injustices, and then to see the incredible genuine love you are, is truly phenomenal. God shines through you so brilliantly, such is evident to all who know you and know of you—and is equally evident through the God-inspired writing you have completed and now share with the world. I love you forever.
Dr. Corey Cameron
__________________________________________________________________________
Sudden loss and great destruction shattered the everyday world of Elizabeth Chalker. Facing difficulties from the beginning of life, her spirit had persevered. But when a serious, long-term, physical illness that went unnamed for most of her life devastated her body, her hope for a future and her very life were threatened and continue to be even today.
In a short time, this beautiful, educated young woman—already established in her career in forensics and
neuropsychology and engaged to be married— experienced the unthinkable. Her engagement was abruptly broken, her career was lost, and most family and friends disappeared from her life. Nevertheless, as Elizabeth’s health has declined and she has endured other life calamities that sent her into intense suffering, remarkably her faith in God has matured and proven to be steadfast. At times she has had nothing left in her dark apartment but Symon, her loving dog, and the “Presence” of her heavenly Friend. He never left. Elizabeth might have argued that point for there were times when even He became silent. During those long periods she could have said with Job:
“Oh, that I knew where I might find God, That I might come to His seat! I would present my case before Him, and fill my mouth with arguments. . . . Would He con- tend with me in His great power? No! But He would take note of me. There the upright could reason with Him, and I would be delivered forever from my Judge. . . . But He knows the way that I take; When He has tested me, I shall come forth as gold” (taken from Job 23:3–10).
In the years I have known Elizabeth and witnessed the merciless testing of her faith, I have watched this spiritual realization rise to the surface. Like Job, she has been abandoned by the majority who were closest to her. However, like Job, she has come forth as gold. Elizabeth has not allowed her mind to stagnate. Instead, she began to write. The ripe fruit of that writing is in your hands.
This is no ordinary book about personal loss, crisis, physical illness, and shattered ambitions. The message here runs much deeper. What I discovered— being mirrored back to me—were my own responses to life’s disappointments. Somewhere, Elizabeth disappeared and I saw myself struggling with personal issues that needed fixing. Many were issues I did not know were there. At that point, I realized the book had a “surface” message and a deeper, heart message. As you read, allow the book to read you. Let Elizabeth’s cries of the heart and spirit uncover what is sequestered in your own heart. Let Elizabeth’s words lead you on a journey beyond her illness and life tragedies to its conclusion— where you will emerge challenged and even strangely comforted by your own life struggles, knowing that you too can have access to this pure faith, realize the bigger purpose for your life, and “come forth as gold!”
Pastor Charles Carrin Retired from serving an individual church; now pastoring pastors."
I've yet to read this book myself but have heard nothing but great things about it.
They have finally found a LLMD who is willing to see Elizabeth despite how sick she is. There's a fundraiser frantically taking place to help get Elizabeth from her home in Florida to the doctor in Maryland. Given the severity of her illness, she is unable to ride in a car/van/bus etc. on the road and is unable to fly commercially. Her only hope is a chartered flight. Donations of and assistance for such extreme measures have been exhausted hence the reason for the fundraiser. If you can contribute at all to the $23,000 needed, please do so using the contact information on her website. There are folks who've been donating as little as $5.
It appears my monthly updates are more like once every two months. I appreciate the 'check-ins' from those of you in the meantime. :)
To start, I still do not care for (in the words of my Gram who didn't allow us to use the term 'hate') the term 'better'. I know it's easy to ask if someone is feeling better or to tell them they look better or to even tell them you're glad they're feeling better. However, that's not a term to use with a Lyme patient. We fight so long for a diagnosis that we often end up so incredibly ill that we'll literally be fighting the rest of our lives.
In late-April I began a treatment targeting Bartonella. This is an herbal remedy that comes in a liquid form. I started with a single drop in about 1/2 ounce of water twice a day and slowly built up every 5 days. Once I reached 6 drops some pretty intense herxing started and my doctor had me drop back down to 4 drops. Through various fluctuations in drops vs herxes, I'm down to 3 drops for now. Amazing how just drops of a remedy can have that much effect, huh?!
At my monthly follow-up with my doctor in May she pointed out that by herxing it shows that a) I do have a Bartonella infection and b) we're on the right track for treating it. She was please to see how well I'd been doing and we were both anxious to see how I do when I returned home.
I've described what a herx is in previous posts but for those who are wondering what the experiences were like this time around it was a lot of neuro stuff. Lots of sporadic spinal and hip pain. Not necessarily sporadic in the frequency but the places. There are various spots along my spine where I get an acute stabbing pain. More seizure-like episodes and tremors, especially at night or after I've done anything that's stimulating during the day. Some disorientation. One evening as my friend & I were driving home we were coming upon the exit to my grandmother's house I nearly asked her if we could swing by but then I realized that it wouldn't exactly work since Gram's been gone since 2007.
I should probably clarify that nobody chooses to feel this way. I don't know of anyone who can have a seizure on demand. In the words of one neurologist I saw, "a seizure is nothing more than the central nervous system being overly-stimulated." For the first time in ages, I reached out to a friend, a non-Lyme friend who had seen Under Our Skin and who I felt was compassionate enough to understand. I shared with this friend that I was feeling more & more like Mandy and less & less like me. The response was shocking - "What can you do to change that?" And later "You're letting it win." I suppose this person was trying to be supportive but instead it was incredibly hurtful.
Despite the more severe herxes (I'd rarely herxed with treatment until then) I thrived while in San Diego. The warmer & drier climate made a HUGE impact on the way I felt. Pain was lower and other symptoms were milder. I still struggled but I wasn't 90% bed-bound like I am here in the PNW. My anxiety was even lower - allowing me to do things and go places that months or even years ago would send me into full-blown panic attacks. Which is quite odd when you think about where I was in relation to where I am - large city vs small town.
I was able to spend some precious time with family and friends and even made a few new friends. And yes, I was able to meet all three new babies and attend a soccer match. :)
As soon as I stepped off the plane my body began to crash. It has continued to crash to the point where I'm fearful of the long-term ramifications. I feel like I took several steps forward in my personal War on Lyme while there and have been pushed all the way back to where I was prior to starting treatment last September.
Given the difference, I've made the decision to move back to San Diego. Something I never thought I'd hear myself say, something many thought they'd never hear me say. I can't ignore the simple facts though. I'll load up as soon as God provides a way.
Lyme, Babesia and the rest have been laying pretty dormant the last couple of months so we haven't been treating for them but I think good ole Babs is sick of being ignored and is beginning to have little fits.
For those of you who wonder about Lyme and would like to know more, Under Our Skin is now streaming on Netflix. If you don't have an account there you can 'rent it' through YouTube, Amazon, iTunes and other on demand sites.
For those of you living with a chronic illness or wonder what it's like to live with a chronic illness, pick up Laurie Edwards's book Life Disrupted from either your library or favorite book seller. She's written in mostly-easy-to-understand language and in fairly brief chapters, both of which make this an easy read. I'm about half-way through it.
That's about all for the updates. Not a whole lot of excitement. I hope to get to the point where I can educate small groups about Lyme and its associated diseases. Those of you on my facebook know I post quite a bit there in hopes of educating. I apologize for the rather negative update - it's just where I'm at right now.
Time isn't the only thing that changed this month. My protocol began to change as well. (Do you like how I just dive right in here?)
After 7 months of antibiotic injections, 6 months of oral antibiotics and 2 months of antimalarials (it's almost a 12 months of Lyme song) we decided to discontinue all of those. I'd been on them long enough for them to become ineffective and possibly begin building a resistance - which we don't want to happen.
For the remainder of March and up until my next check up I was/am antibiotic free. We did do a 3-day blast of a hardcore antimalarial which reduced the Babesia symptoms but didn't totally kick its butt. I experienced some crazy herxing but continued with it because the herx was only supposed to last for the 3 days that I'd be on the medication. And even being only 50% effective the herx was worth it.
I also took a one week break from the homeopathics that I've been on since October or November. I won't share with you why but the one-week break was good.
Since I've been off the antibiotics I definitely see a difference. My stomach is back to be as sensitive as it was before I started treatment. My pain levels have increased exponentially - which is almost fascinating when you consider that they were already at a near-constant 7-8 on the good ole 1-10 scale. How much pain can a Lymie take? A LOT! My comprehension has dropped a bit. I have basically been experiencing some "sundowner syndrome" type symptoms. Oftentimes once 3:00 PM comes around I start forgetting things and am even less able to comprehend the world around me. I've had entire conversations with people in the evenings and not remembered having them. It's both humorous and frightening all at the same time.
Are you still reading this? Would you like to hear some positive news? Not one but TWO of my favorite authors had new releases this month. You might be wondering why that's positive or why this would be significant enough for me to blog about. Each book is part of a series. A series where the characters, settings, writing-styles, etc. are all familiar to me.
Karen Kingsbury is a Christian fiction writer and released the first book in her Bailey Flanigan series Leaving. What I love about Karen's books is that she writes about real life. There is happiness & sadness, love & heartache, birth & death, health & wellness. And it all is done with Jesus. I laugh and cry as I read all of her books. Her happy endings aren't always the endings that most authors would write. But they're happy nonetheless. If you have faith. Leaving has left me on the edge of my seat waiting for Learning which doesn't release until June. Because the characters were familiar I was able to really dive into this story (as much as my eyes would allow) and escape the life of Lyme for about 12 hours. I struggled with one character whose name I didn't recognize but felt that I should. After asking a couple of fellow fans it looks like the character is new so I'm all good. This is one of those books that you could probably pick up and read without having read the rest of her Baxter/Flanigan books but being the neurotic OCD individual that I am, I had to read them in sequential order. You definitely won't be disappointed if you choose to do the same.
Suzanne Brockmann is probably classified as a romance writer but she's not what I think is your typical romance author. Her books - especially her Troubleshooters series - offer a lot of adventure, suspense and humor. Breaking the Rules was no different. This is Izzy Zanella's long-awaited story. And I L-O-V-E-D it - for all 16 hours or so that it took me to read it! This was by far her best writing yet. The chemistry is like none other. Again, you could probably pick it up and read it without having read the previous books in the TS series but you probably won't experience the vibrancy of it. Sadly this is her last book in the series for the time being but I'm anxious to see what she's currently working on.
Yes, I just shamelessly reviewed/plugged two authors. Neither have anything to do with Lyme other than the fact that both gave me a much-needed break from my reality.
My next check up is in 2 weeks. I know we'll be adding something to continue the Babesia treatment. I'm not sure if we'll go herbals or antibiotics or both for the Lyme, Bartonella and other co-infections. Looking forward to whatever is in store.
Then I head to San Diego for about a month to visit with friends, friends who may as well be family, and family. I will finally be able to attend my god-niece's soccer game (she's only been playing for 8 or 9 years I think). After a little over a year I'll finally chow down on rolled tacos from my favorite taco shop (nope, these aren't part of the Lyme diet). I'll be seeing friends whom I haven't seen in nearly 20 years! Visiting parts of the county that I've never been. Hopefully meeting all 3 new babies that arrived in late 2010. Should be a good time! If you're one of my SoCal peeps and you'd like to get together please give me a call or send me a message!
There are 3 non-Lyme events happening in San Diego while I'll be there. Please consider participating in one or more!
The Relay for Life in Ramona. My friend Sean is a Team Leader and is recruiting more team members and collecting donations. Please visit Walking for a Cure's page to make a donation and/or join the team.
You're now caught up from January through March. Talk about a fast-forward through life!
May is just around the corner. May is Lyme Disease Awareness Month. Please, please, please help spread the word about this disease. See the film. Help others see the film. Paint May Lyme Green. Saturate May!
Prayer is a powerful thing. I know - I'm experiencing it!
"Each day we make it through makes us survivors. Having the fight to do it day after day makes us Badasses." - Eric Dominic Rutulante
The most newsworthy event of February was the Under Our Skin screening. If you have yet to see this film please check the website for a screening near you - if it isn't playing near you consider hosting one! PBS is also airing it throughout the month of May (Lyme Disease Awareness Month). If your local PBS station isn't airing it and being around people isn't your thing visit the website above and purchase it.
It wasn't quite the turnout that I'd hoped for with about 60-70 folks attending - some who drove as much as 5+ hours to attend. Out of those 60-70 about 10 did not have Lyme disease. I had hoped to educate many more but as those Lyme patients looked around the room and saw all the hands raised signifying that they too are fighting this disease and its co-infections I realized that this event wasn't just an awareness for those who don't know about Lyme disease. It was also an event for people to realize that they're not alone.
We had four LLNDs who attended the follow-up discussion/Q&A by fielding questions and offering basic suggestions. Of those who viewed the film about 50-60 attended the discussion piece. Many great questions were asked which allowed us to educate ourselves even more. Some of the questions even prompted new thoughts and theories on the parts of the doctors!
If you're ever in need of one-of-a-kind gifts please check out the following craftivists: Victorious VixenUpcycled by Ash, Lymenaide, and Affairs of Living. Each of these ladies/organizations donated an item to the screening to be used as a door prize. Each of these ladies either have Lyme & Co or have family members who have Lyme disease. They use all proceeds to support themselves as well as their causes. I also had friends who donated a hand-made beaded watch and those nifty cozy packs that you can either microwave for a heating pad or freeze for an ice pack. They don't have websites but if you're looking for items such as these let me know and I'll send you their contact info! If you're in need of a photographer or poster-quality images I highly recommend Studio A Photography. I had mentioned to family & friends that I was looking for someone to do snapshots throughout the screening. Studio A donated their time to do this. It is truly heartwarming to see the generosity of these friends!
Just a couple of days after the screening I hit rock bottom. I'm thankful I had the strength and stamina to make it through the event. The fact that I fell so ill afterward is a clear indication that my body still cannot handle working.
A few weeks after the screening I had my monthly check-up. At this point I was at a plateau of sorts. And a low one at that. We weren't sure if the treatment was becoming ineffective, if it was because I was still recovering from the bug that hit me after the screening, if I simply overdid it by coordinating the screening or a combination of all three. My doctor and I discussed all of these as well as the variety of options. Together we decided to continue the protocol, adding this and tweaking that.
She strongly advised I go on an anti-inflammatory diet. The term 'diet' has such negative connotations in American society today so I instead call it 'nutritional therapy'. Basically I was to avoid all pork, luncheon meats, hot dogs, farm-raised fish, orange roughy fish, cow dairy, potatoes, breads, rice, corn, pastas, other grains, frozen or canned vegetables, starchy vegetables, frozen/canned/dried/packaged/processed fruits, mayo, salad dressings, canola, soy, safflower, cottonseed, whit sugar, brown sugar, honey, molasses, brown rice syrup, corn syrup, fruit sweeteners, maple syrup, agave, artificial sweeteners, roasted/salted/honey nuts, caffeine, alcohol and spice combinations.
I avoid much of that already - especially the processed foods. But my basic meals involve eggs, bread, sweet potatoes/yams, teas (usually unsweetened decaf), corn tortillas, cheese, beans, and some fresh fruit. I don't have the energy to prepare MEALS. I attempted this nutritional therapy but after three or four days of not eating much of anything it was eat what I know I can prepare and eat or end up worse. I do plan on trying this again but I don't feel that now is the right time. And in all fairness, I was only to do this anti-inflammatory diet for one month and then slowly add back in some of the more nutrient rich foods and see how I react to them.
An ideal Lyme diet avoids all sugars (Stevia is okay but I react to it), gluten, cow dairy, preservatives, chemicals (non-organic foods), soy, caffeine and alcohol. This leaves organic meats, vegetables, fruits, gluten-free grains, water, real juice, decaf teas, coconut/rice/almond/goat products (cheeses, milks, oils, etc.)
She also wanted me to try doing a green smoothie. In theory it's packed full of nutrients and is quick & easy to prepare and drink. I probably sound like a whiny-butt when I say that my reality is much different. For the most part, I like the suggested ingredients. It takes a whole lot out of me to gather, prep, blend, drink, and clean-up though. Not to mention how painfully loud my blender is! I feel like I'm in a catch-22, really. I know this would be good for me and would go a long way to ensuring I'm nourished.
There are some who have commented on my weight. Which is still a touchy and off-limits subject. My weight does not define me. As ill as I am I'm actually right where I should be according to the BMI. To be totally honest, I don't care about that. My focus is on getting well not on attaining a certain size.
February was the second month of the antimalarial medication. I still wasn't seeing that much of a difference but I continued with it because I suspect Babesia has been proliferating in my body since I was about 7 years old - if not younger. A month and a half of treatment likely isn't going to kill off such a profound infection that quickly.
I continued working with OLDN albeit not as much as I had hoped. My energy levels had decreased, my comprehension decreased, my language processing decreased. I was (am) a ditzy blonde!
Towards the end of February a friend of mine found a fantastic app called iLog Lyme which enables us to enter our most common symptoms then record them on a daily basis. From there we can email either weekly or monthly reports to ourselves, caregivers or our medical teams. It's quite the fantastic tool for monitoring our symptoms and tracking herxes & flares!
When I shared this with another friend who has Lyme he in turn shared Dosecast which is an app that not only lists the various meds & supplements we take but also has alarms for each, records when doses are taken/skipped/postponed, alerts users when a supply is running low and also email reportability.
Neither of these may sound exciting or even logical but when you struggle to remember when/if you took a medication, when you struggle to remember when you felt this or that symptom, when you struggle to remember the whole ball of wax when seeing a doctor - it's a lifesaver! While the iLog Lyme is specific for Lyme patients, Dosecast can be used for anyone. Both are quite reasonably priced as well. Since using both I've felt much more 'in the loop' with my body and my treatment than I have since all of this began. And even better, I haven't missed any doses which means I'm that much closer to beating this! Or at least beating it into remission.
Have you ever considered what your life would be like if you suddenly fell extremely ill? If you were suddenly unable to walk, carry on basic conversations, live pain-free, work, run, read, drive, etc.? I don't bring this up to be a downer but to instead encourage you to take care of yourself and those around you. None of us know what tomorrow will bring. We just know that God will be there. Thank you for all your prayers and support!
Do not be afraid of tomorrow; for God is already there. ~ Author Unknown
I bet all 7 of my followers have been anxiously awaiting my next update! I apologize for slacking off - I was waiting for something update-worthy.
January flew by with the coordination of a public screening of the Lyme disease film Under Our Skin here in town.
My treatment protocol stayed about the same in January with the exception of adding a antimalarial that targeted Babesia. For those of you who are unfamiliar with Babesia the symptoms include: significant fatigue, coughing, dizziness, trouble thinking, fevers, chills, air hunger, headache, and sweats.
We ended up cutting the dosage in half because my body didn't tolerate it as well as we had hoped.
I stayed pretty quiet the rest of the month. Not a whole lot of excitement, let me tell ya! Hence the lack of updates.
As always, your prayers are most welcome. I'm not doing as well as I was a few months ago but I'm still better than many of my Lyme friends. There are some who wonder how I can maintain the faith that I have throughout all of this. It's easy when you feel Him with you.
"Visualize the most amazing life imaginable to you. Close your eyes and see it clearly, then hold the vision for as long as you can. Now place the vision in God's hands...and consider it done." ~ Marianne Williamson
The healing power of prayer is a priceless but most precious gift one can give to a person battling illness. I had an extreme realization of this for about a week in December. I was feeling like a new woman!
One Thursday evening I joined my mom and the two ladies from our local food bank where Mom used to work and the rest of us have volunteered for the last 18+ years or so on a shopping "spree" for the remaining gifts from the Sharing Tree. I enjoyed shopping for one particular family who happened to be essentially homeless this year. All I had to go on were the children's first names their ages (14-, 12-, and 2.5- year-olds, all girls) and the gift suggestions the mother provided. The distribution of these gifts was set to take place the following day. Knowing how busy this time of year is for the food bank and celebrating the fact that I was feeling so well I volunteered to come in the following day and sort all of the gifts. With the ever-present disclaimer of "as long as I'm feeling up to it", of course.
Friday morning rolled around quite early - 0200. Not surprising at all since I often wake up at "Lyme time" but I was certain I'd end up being completely useless before my tasks were done. While sorting the gifts I received greetings, hugs and prayers from folks I hadn't seen in a couple of years. Who needs energy drinks when one receives those throughout the day? I had nearly completed the family packages I learned the last name of the homeless family I had so enjoyed shopping for the night before. As it turns out the 2.5-year old is one of my former students and isn't 2.5 at all. She's 14 (how's that for making one feel old?)! So while I was sad that the youngster I spent so much time picking items out for wasn't even part of the household, I was ecstatic the the items I chose for the 14-year-old were perfect! Paying attention to how much energy I was using throughout the day but cautiously blazing forward I ended up staying for the distribution. The entire day was exhilarating. Especially after having such a bad flare up a month before.
After pushing myself the way I did, I made myself lay low for the next few days. The memory of the previous month's flare up was still quite vivid in my mind and I don't care to EVER repeat that again.
The following Tuesday I drove myself to my LLND appointment. Everyone there was surprised and excited at such an accomplishment. It's always a good sign when a Lymie can drive themselves that distance. The appointment itself was a positive one. Since I had been doing so well she removed 3 items from my protocol - 2 of which I was to just simply finish out the current supply, the other were the Vitamin injections (I was heartbroken about not having to do that quite painful activity anymore) and added only 1 different item. We also decided to continue with the abx injections because I was still responding to them.
I also found a fantastic bead store just down the street from my doctor's office! Thankfully it's a good 1.5 - 2 hours away so I won't be going there very often.
Soon after that I started to slide downhill again. I expected it, given how much I had done but was more than a little disappointed. For a couple of days there I thought I would soon be able to return to work.
One of my closest friends came into town for Christmas and we were able to spend a couple of hours together the day after Christmas. If it had been anyone else in town, I probably wouldn't have kept the date. She's one of those friends who knows all there is to know about me and still loves me. Who gets me in ways that nobody else does. Who allows me to be me. Add to that the fact that we only see each other about twice a year, well NOT meeting her wasn't an option.
I stayed incredibly mellow throughout Christmas and New Year's. The holidays themselves stress me out, which exacerbates the symptoms. Factor in a rather large and loud family in a small space and it just isn't a good idea for me. Luckily I enjoy being on my own and am able to find peace & joy in the little things.
My friend (& fellow Lymie) and I continue to work on our screening of Open Eye Picture's Under Our Skin. We've made great progress securing the location for both the screening and the follow-up discussion afterward (special thanks to both the development group and the property manager for their incredibly generous donations), the screening kit has arrived, flyers have been designed and are ready to be printed and an invitation to our previous doctors has been drafted. We're both excited to see this come to full fruition.
I was also able to finally begin applying for disability. It's quite silly that one must be unable to work for more than a year before being able to apply. It's usually always denied the first time around, and for Lyme patients sometimes more. We're praying that everything goes smoothly.
If you're looking for a way to help promote Lyme and associated diseases awareness, please visit the January Letters for Lyme site and participate by sending letters to your local lawmakers, the IDSA and anyone else who needs to know about this. Please continue to educate yourselves. Visit the Under Our Skin website for screenings in your area. Request the video from Netflix (it isn't available there yet but maybe they'll move forward with the purchase of it if enough people request it), Blockbuster or your independent video rental store. It's also available for purchase on the UOS website. Pay attention to your body and all that doesn't seem quite right. The sooner you realize you (or a loved one) may have an infection the better your prognosis.
Physical strength is measured by what we can carry; spiritual by what we can bear.~ Author Unknown.
