chronic lyme disease with a taste of nut
Caveat: I want to make it abundantly clear that while many MANY chronic lyme sufferers experience similar symptoms, this blog and this blog post is MY experience only. I also fully realize and admit that people I know with chronic lyme disease have it MUCH worse and harder than I do. One of my best friends has battled illness since she was a single-digit age. Another friend is alone in a different country with health bordering on ALS and with no one to help her. Yet another friend’s husband has advance ALS from chronic lyme disease and this loving father and husband has weeks to live. People are making the hard decision to get a wheelchair, people are bedbound 100% of the time instead of my on/off again, and still others are alone in their bathroom staring into the mirror with a handful of pills in their hand. I say all this not to shock you, reader, but to admit that I have it a lot better than many people out there. I have people who love me, even if I feel lonely and isolated and depressed and forsaken. I have my God who will never fail me. And whether I feel comfortable admitting it or not, my middle stepdaughter has, indeed, mentioned to me that she sees small improvements in my health. So read this post with all that in mind. This my experience. This is my body and I’ve learned that even those who love me the most can’t truly understand what is going on inside me. And I’m learning that’s ok. They don’t have to. From them I just need their love, support, and prayers. Thank you. Read on for a discombobulated update.
I write this from Cool Beans Cafe, a coffeehouse I go to two mornings a week. Starting earlier this summer, I decided to get up quite early and go to a cafe before work in order to work on my new collection of poetry. Doing this nearly every weekday (there are two cafes I frequent near my work and one in my hometown) ritual, I quickly discovered that I was rediscovering and reclaiming my writer-self.
When you have a severe chronic illness, you begin to see your self being chipped away every-so-slowly. My daily life existed of scheduling supplements away from any caffeine, scheduling detox regimes around my bee sting days. I ended up changing the actual days I stung because of a Monday night commitment I had where I had to drive into town to attend a meeting. My days consisted of waking up, dreading the idea of getting out of bed, dragging myself through the morning, doing my job the best I could, feeling grateful for such a job, then going home wanting to crash into bed but instead needing to make a plethora of phone calls to a ton of different insurances, kids’ therapists, the schools, and many other places. It seemed that my home and family-related to-do lists never ended. Two years ago I went down to part-time work because my body could not handle the stress and energy it took to work a full day. Now, I had another part-time job at home figuring out our finances, car and home insurances, my health insurances, kids-related things. It took a toll. I made many mistakes because the brain decided to go on a vacation.
I’ve talked of brain fog before, but these past 10 months I have had days where I cannot string words together at all. I’ve had days where I’ve substituted the wrong word. And I’ve had days where my anxiety over talking has trapped me inside the house in frightened silence. One time I got lost on my way home. That’s when it gets particularly worrisome and you begin to research and see the connection between Alzheimer’s and chronic lyme.
Along my journey both with chronic lyme, itself, as well as Bee Venom Therapy (yeah, yeah, I’ll get to that in a minute), you quickly learn that if you follow the path to every worry, question, or idea that comes your way, you will quickly find yourself down Alice’s rabbit hole.
Been there, done that. Not a fun place at all.
So. BVT. I’m on month 9 even though it should be month 10 since I started in the middle of last December. I had to skip much of May due to a medical procedure I had to have that revealed no worries. That is good, but as with all my tests being “fine,” the problem, itself, remained. Nevertheless, I had gotten up to 7 stings and had to start over in early June with 1 sting and work my way up to 7 again. I could go faster since I just had to remind my body of the bee venom. Oh, right, this weird stuff.
It was hard to start from step 1 again. It felt discouraging and like a never-ending merry-go-round due to the fact that I was herxing worse going back up to 7 stings. As of my last update I was straddling 6 and 7 stings. To be honest, I have never made it one full week past 8 stings. Remember, my goal is to get to 10 and stay on that number for 2-3 years. Some BVT experts say the healing really can’t begin until you get to 10. Still, others say that you can rest at 7 for as long as you need and as long as you stay consistent, you can still reap the benefits. It’s hard when you are learning all this from human beings, not doctors, who have done this and so few have actually graduated from this “program.” Quickly, we learn that doctors know nothing about BVT and can’t guide you through this journey, anyway. Surprisingly, very few LLMD’s know the ins and the outs of BVT. Some LLMDs are familiar with BVT injections, but I am doing pure bee venom, not venom with other stuff added. So I must rely on those who have gone before me in the BVT world and, truth be told, there aren’t many out there. Those who have done this are extremely helpful and supportive, but it is still very overwhelming not having a true “expert” to talk to any ol time. So I call “T” often and I utilize the marvelous Facebook BVT pages. To the average person who relies only on the mainstream medical community, the idea of relying on other “patients” sounds almost like heresy. But I have no choice.
The BVT has not gotten easier as time has gone on. Symptoms have increased – scary symptoms that I didn’t have before. I’m told, however, by those who live with me and see me daily that my “good” days are increasing, even though when my “bad” days happen they are worse than ever. I admit I go through short bursts where my “good” days allow me to go to functions, to visit friends, to go to the store, to walk better and easier, to have a bit more energy than I am used to, though still sub par.
I try my best to focus on the good days. But it is hard. It takes a change in attitude and perspective. And my attitude and perspective sometimes squirm like a child who doesn’t want to be held by her parent.
Symptoms that have improved:
I no longer walk all the time with such a severe limp
Energy has improved on the good days
My rage and irritability from the Bartonella, while not gone, has def. improved
Good days bring with it an intense feeling of euphoria
I’ve been able to write more, though reading is still out
Symptoms that have worsened:
Seizures are more frequent and intense lately
Brain crunching/squeezing (now happening at any time of day rather than just at night)
I’ve gained significant weight after having lost significant weight which affects my mood
Cognition abilities such as talking, understanding what is being said to me, multi-tasking
My work has suffered due to my increased absences since July
In short, treatment has been hard. Life has been hard. I’ve come to know The Hard. I’ve become acquainted with The Hard; I’ve whined through it, cried through it, prayed through it, pushed through it, white-knuckled it, danced through it, sang through it, cursed through it, and sometimes just sunk into it, not knowing how else on earth to handle it.
Due to the nature of chronic lyme disease, it is so invisible that on days I am out of the home, I look fine. Sadly, it is those who I love the very most who see the ravaging affects it has on me. My kids, my husband. They get the worst of it. My kids always ask how I am feeling that day, if it’s a good or bad day. They pray nightly for my healing. My husband has had to work extra hard to not only take care of my on my disabling days, but also the kids. Our oldest moved out this summer and now we are facing some new diagnoses with one of our kids at home. It is a very stressful time. Handling a new protocol of parenting, the BVT protocol, detoxing protocols, and waking up and wondering if this will be a “good” day or a “bad” day – it has its effects.
Returning to the beginning of this post, I am currently sitting on one of the two cafes I frequent before work. My third collection of poetry is in the hands of 6 different publishers as we speak and scores of poems are out to various journals. I try to submit some every weekday morning. It reminds me that I am still me, still writer, still creative person. I eat writing, drink it along with the morning coffee I probably shouldn’t be having. I focus on words even as they come jumbling out in disjointed poems I later have to reassemble. Even if they come out in pained handwriting in a journal I have stopped using every day. I don’t care. I am not letting go of my writing. I am not forgetting who I am.
And in all transparency, because that is what I believe in, that is the purpose of this blog – to educate others, help sufferers feel less alone, and to update family and friends – my illness has brought me closer to God and to my family.
Even though just last night I was brokenhearted to have to miss another child’s after-school activity because I tend to hit my wall around 5:00pm, even though I feel sickness is yanking me away from life, I do see myself slowing down and in that slowing down making more time for the simple, loving, rewarding exchanges that happen between parent and child when parent reorganizes priorities. When crisis happens so harshly that you realize if you keep going at this pace or with this perspective, then you will miss these years of first dances, first cub scouts, first crushes, first comforting after first being bullied. You realize that God and family are the most important things and are not to be taken advantage of.
I have certainly made mistakes along my journey – not just with illness, but with life. I’ve made poor choices and suffered for them. But my character has been strengthened. My faith has been honed. On my dark days, it gets very, very dark. While getting stung with those bees, I sometimes feel like a box of evil opens up and every bad memory, thought, trauma pours into my brain (which is kind of actually happening because one can have an immediate psychological/emotional reaction to the venom going in – the flood of good guys hitting the bad guys and the bad guys fighting back with all they’ve got) which makes everything seem insurmountable. But I get through it with the love of my husband. I get through it with the love and comfort of my God. Even when I feel utterly forgotten and forsaken…when others who see me outside the home and remark how good I look or how I must be feeling so much better…and I want to cry because no one sees the inside, and I sometimes I wish all these crazy symptoms were happening on the outside because society accepts and understands things they can see much better than things they can’t. But even when all seems lost and I feel the hole has claimed me, I keep holding God’s hand; I listen to His promises
So I don’t blame my precious bees for The Hard. I think it just comes with this life. I know it does. I believe the bees will be used to be the vehicle of my healing. I also believe if I remain in negativity I will never heal. A good resource for a celebrity who has chronic lyme is “Bite Me” by Ally Hilfiger and while many don’t have the money or resources she had at her fingertips, she is a great testimony of a determined spirit as well as an attitude that had to be honed and improved upon and that ultimately was a huge part of her remission.
God has this all in His hands. He knows what the end of my story looks like. I trust Him to carry me from day to day, even if I wind up in a wheelchair on my bad days and as I have my good days where I work, go to cafes, even go for a small walk. This will be a gotten-through thing. This will not be my end.
And then listen to this – my theme song for “perspective”
Take a bite…
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