So much has happened since my last post. I’ll be as brief as I can but it will still be a little long. I also apologize as I’m having some neurological issues so if I repeat myself, I’m sorry!
Sometimes I look back and remember our first dates… And even earlier, staring at each other from across the desks at work… And I wonder how we got here. So far from where we started. Simple dreams of a place of our own, careers and maybe a family. How did we get this deep into debt when we still have health insurance? How did we have to drain our savings? We were prepared. We had savings. I drained them in June and July to pay our bills. Prescriptions totaling in the hundreds a month. And now, I can’t work either. Dani looks at me and asks me to please be happy, we have each other. And I cry. Because I’m stressed. Tired. And sick.
I remember our weekend target runs every Saturday when we first got married and I wonder if we will ever be that couple again. Cracking each other up and Dani drinking her latte too fast. I can’t remember what it feels like to go out together like normal people. Without exhaustion… Or even just with Dani now that her adrenal fatigue is running amuck.
So anyway, moving on, In the beginning of June, I began to get worse and worse. The past month (May) or so I could barely make it in tout work. I would make it in for a few hours, or if I was lucky a whole day. But the day after the whole day had to be a half, if I came in at all. The exhaustion was indescribable, add to that brain fog that made it so I could barely
think combined with racing thoughts, racing heart, anxiety, roller coaster emotions, blurry vision, stomach issues, headaches, sweats and chills…And my worst symptoms were horrendous leg pain (felt like someone was ripping the muscle out of my calves and then shaving off the bone, fun!), and feeling like I was going crazy and I wanted to rip my skin off. Its hard not to scream. It was hard to even sit at my desk. By the end of the day, my whole body was vibrating (I felt like a human cell phone). I knew I couldn’t work anymore. It wasn’t even safe for me to drive home, I was so exhausted, my vision would blur and I couldn’t think clearly. I had to drive to Dani’s nana’s house that was a few minutes away from my work and sleep. I felt myself getting worse by the day. Also I knew it had gone to my brain.
So, at the beginning of June, I went back to my new Lyme doctor (LLMD). According to her words, my test results were “interesting.” So far, from the last doctor appointment, the diagnosis was:
*Late Stage Chronic Lyme
*Bartonella (another tick-borne bacteria), my worst one – lights up like a Christmas tree on my testing
*Babesia (a tick-borne protozoa that lives in the blood)
*Encephalopathy (definition) – caused by the above, they have gone into my brain
*Ataxia (definition)- also caused by the Lyme, Bartonella, and Babesia
*Candida and Leaky Gut Syndrome – common with long term antibiotics or low immune systems.
So when I went back to my Lyme Doctor this June, I was dragging and feeling horrible. So much pain. I didn’t know how I could go on. Just doing one thing a day was more than I could handle. Some of my lab results were back by then.
Diagnosis’s added to the previous ones were:
*mold toxicity (quite high numbers. It’s not good)
*coristol and adrenals are also all out of whack (yes, that’s the technical term).
* an infection caused by Babesia having to do with hypercoagulation.
So, more supplements were added and more tests for thyroid and several other things. I got my mold medications mailed to me from a compounding pharmacy in Virginia. Weird. She told me trying to work while in this condition would only make me worse.
I sent the papers to my doctor for my short term disability. I simply couldn’t make my body even get dressed anymore. Unfortunately it has taken forever to get everything together so my short term papers were submitted this week. Yes. That means I haven’t been paid for all this time. Two months. Now I have to wait I until they approve it! Now I have to pay my cobra too. This is bad. But we will talk about that later.
We had a few joyous spots. Occasionally I can take Dani’s sister out shopping for a bit. Occasionally I have a tiny bit of energy… But most of the time I’m a wet noodle or anxious and exhausted. We got to see Dani’s sister graduate middle school and go to her spring dance. I’ve spent the last several weeks in bed, feeling horrible, and alternating between sleeping constantly to awake agitation. I feel like I’m going crazy and I cry almost everyday.
The pain is indescribable. The pain in my legs is awful and constant, the rest of me is fibromyalgia like pain throughout my body. I can’t wear jeans anymore, or normal shoes… Joggers, leggings, lightweight soft tshirts, shoes that are slip on and light (if anyone has extra, send them my way!). Fashion goes out the window. I was all excited for my cute new haircut. I haven’t been able to wash it since. Maybe this weekend. Showering is exhausting.
I want to get better and have a plan. I follow what my doctor says but I feel I should be doing more. I did go to a neurologist because I knew my neurological symptoms (detailed in previous post) were getting worse and worse. I’ll do a blog about neuro Lyme and what bartonella and babesia do to the brain.
I went to a neurologist who is familiar with what Bartonella and Babesia do to the brain. He was wonderful. I felt so relieved. So far he’s determined the following:
*nerve damage in hands feet and legs
*lyme, babesia and bartonella have gone into the brain.
*Fibromyalgia caused by the infections
he was also very concerned about my immunodeficiency, he said he could get me IV IG and I need it now but didn’t want to step on my Lyme Drs toes. We will see how that goes.
It’s actually nice to know I’m NOT going crazy. He suggested a new medication that is used to treat PBA (basically he explained this to me as the bacteria can destroy the part of the brain that “keeps things in check” like “it’s not okay to cry in this setting.” Etc. so he prescribed a new med (the 314 dollar one!) to help that and ordered 5 tests including a brain MRI. This way we know what kind of damage we are dealing with. So relieved to have a great neurologist on my side 🙂 I quote “Lyme makes you feel like you’re losing your shit. I can help you get it back.” And I knew I found the right Neuro.
About Dani: she has a few new things going on. She started physical therapy this week (copay each time ahhhh) for her back and shoulder. So the thing with Dani? Remember we thought she had a rotator cuff condition? Well it’s much worse than that. It’s a condition called shoulder necrosis, along with a bicep tear. It literally means her shoulder is dying. The specialist we went to see said physical therapy and then surgery when it gets unbearable. Dani doesn’t do well with surgery. So I’m seeking a second opinion. Additionally she has something called a hiatal hernia which explains a lot of her stomach problems. We still don’t know why she has adrenal fatigue, why she falls asleep… She gets in these phases where her speech slurs and she doesn’t make sense and her pulse ox drops to 87. I think she’s having adrenal crashes. We assume the hallucinations are from her Neurontin and some from Her PTSD. She continues to struggle with these issues but at least her back is not worse, right? Ugh.
Some of my new treatments incapacitate me so much that I am Not only unable to care for Dani but she isn’t able to care for me. So I came down to my parents for a few weeks to try to get through the rough spots hopefully. Dani is with relatives. This is the worst relapse I’ve had. I’m scared because I don’t know how to get better (other than obviously doing what my dr says which makes me much worse before I get better. I know that going through this is the only way to be not just in remission and functional but hopefully mostly symptom free…. But the process is awful.)
I feel terrible I had to leave Dani in NJ for awhile, but I didn’t know what else to do. We couldn’t care for each other. So, my love is by herself there…. please send some love her way if you can! (She doesn’t go on facebook though, remember! )
I don’t want to be a Debbie downer. But I do want to be honest and real and say how things really are. We’ve been so blessed by all the love and support that has come our way. A dear friend sent enough to almost cover 1/3 of Dani’s scripts for the month of July . We had dear wonderful friends come over a few weeks ago and clean and organize and cook us dinner. We get flowers sent too.
******But I also don’t know how I’m going to pay the rest of this months bills or rent for September. We are growing deeper and deeper in debt. Credit cards are maxing out. I’m terrified. We were keeping our heads above water when I had money coming in… But now… I just don’t know. Plus my treatment is hella expensive. I realize this stress doesn’t make me heal any faster.
I recently got some wonderful ideas on how to fix up the blog and do some fundraising but I have a lot of work to do to do it so it will be slow. I’ll also be updating our “About us” section.
Ways you can help:
If you are able to donate financially, here is our go fund me:
If you can help with meals or anything else like cleaning etc in September once I am home, that would be great.
If you have fundraising ideas, please let me know.
Please share or blog and our go fund me as much as possible. Send it to whoever you can, friends, whoever, I don’t care. Over and over! (Also let me know how I can improve the blog). I am working on condensing our story to try to share with media outlets.
Once I feel a little better I will be selling stuff on poshmark, mercalli, and local apps. If you have anything to donate I could sell, that would be amazing. (Ask me what I’m looking for)
Please continue to encourage us, as we are worn down, scared and at our wits end.
Thanks for reading, friends. Another update soon.