“King and Lionheart” (Update on both of us)

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:

*severe immunodeficiency

*mold toxicity (quite high numbers. It’s not good)

*Marcons

*Hyperthyroidism/thyroid issues

*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.

IMG_3669

yes, these are my meds and supplements, including the cooler. Formerly my yarn box! UGh.

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:

*encephalopathy

*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.

IMG_3663

I miss being able to do projects like this.

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.

IMG_3651

Missing my girl.

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! )

IMG_3654

Made it to parents house selfie.on FB so don’t do it there!)

IMG_3191

Best friend sent frozen meals (vegan/gf)

 

 

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.

IMG_3382

A dear friend sent us enough to cover 1/3 of Dani’s meds for this visit

 

IMG_3318

Another dear friend sent these

******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:

gofund.me/healingdaniandjen

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.

(update on Dani) What You Doing to Me?

It’s been so long since the last post. I think I’m going to have to break this up into several small ones. I’m just not well enough to do too much these days and it’s a miracle I was able to sit down and start this one. So much has happened since the last one. Some really lousy thing but also some really happy things too.

Since I last wrote, lots has gone down with our health, for the both of us. Always fun when it happens at the same time. For this post, I’ll start with Dani.

There are lots of health issues going on with Dani, which I will be outlining to keep everyone in the loop. But first, I know the whole mental/emotional aspect isn’t helping anything. Grief is still ongoing. It’s tough…. occasionally she has an okay day. But most days aren’t. Tiny things trigger it. I can’t even begin to describe it. Honestly, I haven’t lost a parent so I had no idea what it would look like…. I wish I could take her pain away. But it’s more than just losing her mom. Slowly, I began to notice some changes in her. Then in November there was a very traumatizing event I won’t go into that seemed really trigger a lot of new behaviors, and then her mom passed in January. I didn’t know exactly what was going on, but we both knew by this spring she needed to start seeing our therapist regularly again. Dani’s been diagnosed now with PTSD, it’s just a compilation of everything, traumas from the past I won’t go into here,  the severe ongoing illness, chronic pain, loss of her job, loss of her mom, and then me getting sick. I looked up the symptoms after our therapist diagnosed her and talked through it with me and how I can support her and it all made sense – I had no idea what was happening to her and so I’m relieved that we have that diagnosis so we can work on getting her the helps she needs in this arena. Don’t worry, I do try not to forget about self-care, though it’s hard.  I see our therapist too. She’s wonderful and I honestly don’t know if I would have made it through all of this without her.

Okay, so moving on to Dani’s physical health. She fell back in March or April, I can’t remember. She was trying to save her back and thus hit her elbow which did something to her shoulder. We didn’t think much of it and her doctor said it was just a rotator cuff injury and would heal. Well, it didn’t. It kept getting worse until the pain from her shoulder is now competing and winning from the pain in her back. She is having an MRI done next week for this. She may need surgery. Ugh. One day at a time.

We also had a visit with a wonderful pulmonary doctor with Cooper. Dani is having a lot of trouble with wheezing and so was getting scared something was up, also she has what I think is likely sleep apnea, due to some of the surgeries and the shifting around of bodily organs, etc. The doctor set up a home sleep study that will happen this week. He was really awesome and said it’s really unlikely she has any sort of COPD going on, but was happy to set up a breathing test for her. Her primary also is having an x-ray done of her neck to make sure she doesn’t have an obstruction.

At the beginning of the week she had an awful test done called a GI series. They flipped her over on her stomach and she had to drink a lot of stuff really fast…. As some of you  may know, her stomach is very swollen and painful. So this set her back in the pain department big time for the whole week.For the past year, Dani’s been having reflux, she has severe pain and swelling in the top of her abdomen, and has difficulty breathing, lack of appetite (I can barely get any food down her ever! She will often go most of the day without eating until I make her eat). So, thanks to this test we found out she has a hiatal hernia. That definitely explains some of her symptoms. So, hopefully between that, the breathing test, and the x-ray, we will have some answers. I know the swelling in her abdomen is causing her a lot of issues with breathing and pain and I really want to get it resolved.

She’s still having a lot of trouble with consciousness/delirium/hallucinations that are caused by her meds. Her doc calls it “altered sensorium.” We are working to reduce and change her meds around to correct this but it’s tough because we can’t have her in excruciating pain, either.

She has her consultation with physical therapy next week so cross your fingers she’s in okay enough shape that they will work with her and can really start improving her quality of life…

And last but not least. This naturopathic doctor she started seeing. We’ve only seen her twice (my fault, I’ve been too sick to take her, it’s an hour drive) but so far she’s figured out a lot. She determined Dani has crazy off the chart Candida infection (like I do). So, we’re both working on diet/meds to deal with that. She also found heavy metal poisoning from titanium and silver. (huh???) She thinks that Dani’s main issues right now are because her HPA axis is completely off kilter and it’s an adrenal issue. But here’s the crazy thing: she specializes in reproductive endocrinology! So, she’s doing lots of tests. She’s also willing to do the test that neither Penn nor Cooper nor Hopkins would do: The progesterone challenge. Basically they give Dani progesterone in a doctors office and see if she reacts. She believes that Dani was misdiagnosed and she doesn’t have an allergy to progesterone. If this is true, we can’t undo the hysterectomy but we can give Dani bio-idential hormones, which will really improve her quality of life. So if she doesn’t have auto-immune progesterone anaphylaxis? Then it’s likely a genetic autoimmune disorder. We don’t know yet. We also don’t know if this lady can really help or not. But so far she’s at least figured out the Candida and the heavy metal toxicity. So that’s a start in the right direction. I’m absolutely terrified of them doing this test. But I understand what this doc is saying, we want to fix Dani, not just keep trying to control the symptoms. The main thing with her seems to be inflammation that comes out in various forms. We just can’t figure out where it’s originating from. There’s also a possibility of cushings syndrome and I want to ask the Dr about CIRS. But one thing at a time. But yeah…also really terrified. I don’t know how to handle all this stuff and I don’t know if this is a good thing or not.

It’s so hard to know which doctors to believe…. it’s so hard to know how to get her better. I feel like we’re just kind of blindly stabbing in the dark. And now that I’m sick…. I’m stabbing in the dark much more slowly.

http://www.gofundme.com/healingdaniandjen

 

 

 

 

 

There’ll Be Sad Songs – Part 2 (Update on Jen)

Hi there. As I mentioned on my Facebook post, May is Lyme Disease Awareness Month. Perfect Timing! Because I have a lot to share with you in this post and many blog and Facebook posts to come.

Many of you have asked what’s been going on with me lately, I’ve kind of dropped off the face of the earth, so I wanted to update everyone. It’s pretty scary. As many of you know, I’ve been pretty sick recently. Here’s some background, though: I got sick originally in my junior year of high school (1998) and got progressively worse until I was bed bound in 2004 with my organs shutting down. I was diagnosed with Lyme at that time but I didn’t have the best doctors – I didn’t know what I didn’t know. I kept seeing doctors who didn’t really help me, some just said “fibromyalgia” while others said “chronic Lyme” and just gave me MORE doxycycline and amoxicillin. I continued to be treated with oral antibiotics but remained only “functional” with frequent flare-ups until 2013 when I got significantly better and went into remission thanks to a diet change, reduction in stress and perhaps finding love helped too. Unfortunately, trauma, stress, physical exertion and lack of rest can make these little bugs come out of hiding.Once you stir them up like this, it’s extremely difficult to get back into remission.

So, in April of 2015 I began to relapse. By October of 2015, I was having a pretty hard time. And then 2016 has been all down hill. With this new relapse I have many more symptoms than I ever had previously. In the 2000’s it was mostly flu-like symptoms, fatigue, brain fog and repeated infections. There are so many different factors with Lyme, it is truly a multi-system disease and I have co-infections, other diseases that came with the Lyme. Here’s an article that explains it a bit: 11 Reasons You’re Not Better Yet From Chronic Lyme.

Anyway, this year I became desperate and began to look for a new doctor because I can’t live this way anymore, I am deteriorating quickly. As I am learning, the longer you have the bugs, the harder it is to get rid of them. Lyme, for example as it progresses, is not just bacteria in your blood. There is also the cyst form (where it encapsulates itself in a “shell”) and it can hide under “biofilms” where it literally creates as sticky armor of film for itself. You have to break through these to even  be able to treat the Lyme in your tissues. I have it literally everywhere. EVEN IN MY TEETH. But I feel like the worst part is knowing it’s in my brain. But, we’ll get there…Anyway, I decided I had to do something when I would wake up with tears in my eyes from the pain. When I couldn’t even get up to walk to the dog, or reach my phone on the nightstand.

To give you an idea of what I’ve been dealing with the past few months, here is a small glimpse of my current symptom list for the month of April:

*Constant flu-like symptoms (body and muscle aches, feverish, sore throat, hot and cold). *Fatigue is so severe I often can’t even get up. No grocery shopping, errands, anything extra. Can barely manage to work limited hours.* Night sweats *Severe leg pain – spasms and cramps in calves, shin pain, foot pain, it feels like I’m walking on glass and my legs are shattering. *Vertigo/severe lack of balance –  on a boat/spinning/rocking most of the time, I fall or almost fall several times a day. *joint pain –hips, hands, shoulders, knees, feet.* bone pain*Extremely sensitive to sound, activity, light, and touch*Neck pain and stiffness. *Vibrating” sensations all over. *Air hunger. *Ice pick headaches. *Eye pain.*Chest pain and heart palpitations.*loss of appetite.*random streaky rashes.*Alternating between insomnia/heart racing/ no sleep for 72 hours and sleeping for up to 23 hours straight. Unable to wake me up.

IMG_2631

Showers are exhausting. They have been happening  WAY less than once a week. These guys (and deodorant, perfume and wash cloths) are my best friends, though I have to say my hair stopped getting greasy. Not sure what that means. It’s a miracle what a pretty scarf, nice earrings and some tinted lip gloss can do for the “I will cry if I have to stay awake for work today” look.

Neuro Symptoms: *Blurry vision *Burning on the bottoms of my feet, tingling in my hands and face. *Anxiety, depersonalization, crying jags, mania, feels like bugs crawling on me, drastic personality change. *Memory loss (seriously, it’s bad. I’m like Dory on Finding Nemo.) *Brain fog. *Difficulty with speech, finding words, stuttering*Numbness in legs and arms (my arms are completely numb every morning when I wake up) . * “Losing time,” or brain blanks where I do not know what has elapsed. *Episodes where nothing makes sense and I can’t communicate. *Difficulty holding/following conversations. *inability to focus. *Falling asleep without warning *weird waking hallucination/dreams and deja vu *Vision problems: seeing rings around lights, seeing light moving when it is not, floaters, tunnel vision, problems with text, etc. (I put an article about how Lyme affects your vision at the bottom)

So, anyway, all that’s fun, right?

A month ago I went to see my new doctor. After a lot of research (A LOT!) I finally settled on the one I wanted to see. She has an office in Ellicott City, MD and one in Oakton, Va. I will obviously be going to the Maryland office because it’s only a few hours from me, but for the first visit I went to the Virginia office because it’s only an hour from my parents house. Dani was unable to attend with me so I took my dad because it was a 2 hour long appointment and I get tired and forget things. I wanted to have someone who would take notes for me. If you know my dad, you know he’s the guy for the job!

After the appointment, I wanted to cry with relief. She was extremely compassionate and was the most knowledgeable doctor I’ve ever met. I could not be happier about finding her. She treats the whole body and will get to the bottom of everything. She did a lot of tests and I have had 4 more tests done before my next appointment.

But… You guys… I’m really sick. I’m scared – I’ve kept my head in the sand for so long with some weird form of denial. This is going to take a lot of time to beat. And it’s going to be hard and invasive. But I’m so relieved that I finally have a treatment plan. And it’s going to be expensive. So far, here’s the diagnosis:

*Late Stage Chronic Lyme

*Bartonella (another tick-borne bacteria)

*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.

The doctor is doing a lot more tests to see what else we are dealing with. Potential other bacteria, viruses, protozoa, mold toxicity, low immunity etc.

So, treatment!! She started me at a low-level plan to add a new med each week to see how I

respond to them. So far, I’ve been doing well because of the supplements she’s added in to help minimize herxheimer reactions. (I’ll post my current plan at the bottom of this post for those of you reading this who are Lymies and are interested in what she’s doing)

The doctor is also having me detox as much as possible (get toxins out of my system) by doing Epson salt baths and infared saunas (this is going to be weird for me, I’m definitely not the sauna type!).  Because, at the next appointment at the end of May, she will review all the labs and we are coming up with a plan for IV treatment/having a PICC line put in. The doctor said that I have failed oral antibiotics and now with both my neurological issues, worsening of symptoms, length of time sick that I definitely need IV (antibiotics, anti-fungals, anti-parasitics, and perhaps anti-mold and immune boosting therapy). So they will be submitting to insurance for a PICC line and we hope it gets approved (She reassured me that most of the time, it is. Cross your fingers for me, guys!!!I am terrified the PICC will be denied. I NEED this.).  She also started me on a TON of supplements. For the first time in…like 17 years I feel like I  have real hope.

But… the thing with this kind of treatment is you NEED it, without treatment there can be potentially fatal complications. Lyme/MSIDs/Co-infections range in severity. Everyone is different. Genetics play a huge factor, the number of years you are ill, etc. I was untreated for 6 years and then sub-standard treatment for many years. Many go 20 or 30 years without diagnosis and are wheelchair bound, or bed bound many years longer than I have been. While I understand what I have is very serious, I think of my fellow Lyme warriors who are much worse off. I also see that this is now or never for me. I have reached the turning point, it will get worse from here if I do not seek intensely aggressive therapy. Immediately. I won’t sit by and keep deteriorating until I can no longer function. But going through the treatment is extremely painful, unpleasant, etc. So it’s not fun either way. Killing the bugs means kicking them up and making them angry. Over and over again.  For months (I hope…). I’ve heard different numbers on recovery time. Some are significantly better in 6 months. Others, it can take a year or sometimes two. (We are being optimistic that this WILL work, I’ve been pouring over success stories and making a plan).

It’s also very, very expensive. Some of the meds my insurance covers. Some they do not. I’ve been fortunate enough to be able to get help with the anti-malarial drug I needed that cost $923. Dani won’t let me worry about the future. Or next month. One day, one prescription at a time.

IMG_2623

Our “stack” we’ve accrued since we moved….3 months ago.

I’ve also had to change my diet. Because of the Candida, no more sugar, no more starch. Also because of that, along with the Lyme, Bartonella, etc, I have to eat mostly Paleo.

Basically nothing processed. I allow myself 4 oz of low acidity coffee in the morning mixed with coconut milk. I cook with coconut oil. Basically, I don’t eat anything that causes inflammation or immune suppression which is: sugar, gluten, dairy, processed foods, non-organic foods. I definitely see a difference. I can also tell if I “cheat” and have something processed, I don’t feel well. I now crave avocados all the time, so I pretty much just put them on everything.

Dani is still struggling with her health. We have hope in some areas and are nervous with others. That will be a separate post when we know more. But, I bring that up because as you can imagine, this is going to be hard. We are going to have to have each others backs here. We have had a tough time the past few months. Who’s going to do the laundry? Who hurts less? Food?  oh… you actually have to cook it? Damn.

But I have hope to be “normal” again. I miss my friends. I miss the sunshine. I miss hanging out with my love. To my friends (and our friends) I say this… If I don’t answer your call, it’s because I can’t, at that time I’m not well enough to get the phone. I will call back when I can. I miss you. Please PLEASE don’t stop reaching out to me/us. I need you guys. I cannot emphasize enough how much we need you guys to get through this. Thank you for all your continued support so far. A few of you have offered help, I will get back to you soon. Thank you. We appreciate and can’t thank all of you enough for any help that has been/will be provided. I also can’t even express how hard it is for me to write that we even need help.

My next appointment is next Friday. I already notice a small difference with the “low level” treatment plan the doctor has me on. I now have a few good hours every couple days. More updates soon on that.

I plan to write a lot more about this. I want people to know more about neurological Lyme. I want to help people understand how these diseases can ravage every part of you. Lyme even causes psych symptoms. I have not talked about that with anyone but I think it’s important to spread awareness. I want to write more about Dani and what chronic pain does to a person. Expect more posts – expect openness and honesty. If things are rough, we’re going to be upfront about it.

Here’s a few links if you’re interested in reading more about Lyme and MSIDS. Many of you may have heard Lyme is cured by 21 days of antibiotics. This is simply not true unless you get the antibiotics immediately after the tick bite. This cover up by the CDC is called “the Lyme Wars” and I will have more information on this in another post. It’s complicated and the thought of explaining it makes my head hurt.

Websites:

10 things to remember when someone in your life has lyme

Excellent resource: Tired of Lyme Resources

Visual Symptoms: http://www.tiredoflyme.com/bizarre-visual-symptoms-of-lyme-disease.html

Blogs:

Excellent blog about Lyme treatment:Will There Be Cake Blog

A success story blog, very well done: Karla Fights Lyme – A success story

Struggle with late stage Lyme: https://kimmiecakeskickslyme.wordpress.com/

Resources:

https://lymeinside.wordpress.com/2012/05/28/how-to-get-mepron-covered-lymedisease-babesia-mepron/

http://www.tiredoflyme.com/horowitz-lyme-msids-questionnaire.html

My current treatment plan: April-May 2016

(One added every two weeks)

  1. Doxycycline  (with Pinella and Burbur)
  2. Diflucan and Nystatin
  3. Mepron
  4. Rifampin (haven’t gotten to this one yet)

Plus:

Repair Guard, Hawthorne, Candida Support, Saccharomycin, Xymogen NAC, Alamax CR, ProbioMax DF

There’ll Be Sad Songs – Part 1 (Update on Dani)

Preface:

Hi friends and family…. We have lots to update you on. To avoid an EXTREMELY lengthy post, tonight’s is about Dani mostly and I’ll post another on what’s been up with me tomorrow.

I wrote this post last week but was hesitant to post it. I was hesitant because I knew I was having a hard time with feeling overwhelmed and sad. While I know this is normal with all that we’ve been up against, I didn’t want to send out “negative vibes.” I just didn’t feel right about the post. So, I’m posting it now but with the following clarifications… Things are tough. Don’t get me wrong there. But there ARE many things that are looking up. We are not without hope and we do realize how truly lucky we are.

While we have a lot still going on with Dani’s health, it remains chronic, but thankfully gone are the days where every second is an emergency. It has taken me many months to come down from that. I used to live minute to minute. My heart pounded and adrenaline surged everyday, every hour. Was I going to lose her? Should I take her to the hospital? Why is that doctor running to get to her? You get the idea. Every week was an ER trip or almost every day someone asking Dani if she felt like she needed to go to the ER. These days we are grateful to be able to be home most of the time and manage MOST things with a call to the doctor and outpatient tests. This time last year she was still on the walker! We are all cane now!! Woot!

We are grateful that we are finally starting to get (some) time to spend together and reconnect after well over a year of turbulence and large chunks of time apart due to hospitalizations, time spent having to stay with relatives, etc. Going out together is still rare (my health doesn’t permit it much and Dani gets so wiped out she sleeps for a day), but we are able to spend a few hours out together now when we are feeling up to it – something unheard of before. Anyway, that was my long way of saying “wow, things are really hard but WOW look how far we’ve come!!!”

Brief medical update: Dani has begun seeing a natural doctor in addition to others, so we are hopeful that can help beginning to  improve her quality of life. She’s still really struggling with the kidney infection outlined in the post below. Dr. Appt for that on Monday. She had a fall a couple weeks ago and hurt her shoulder pretty badly. She just got an x-ray so we’re waiting on those results. I told her if she’s in a sling AND using a cane I will officially lose my mind. (Poor thing!).  Oh, and non-medically, she got her hair done and it’s purple and turquoise!  That HAS to be good for her emotional well being.

So, all of that being said, here’s the post I wrote last week:

We had to take Dani to the ER Monday night. She was wobbly, confused and disoriented, had heat radiating from her back and was hallucinating (not her normal “awake dreams” but full on- seeing things that weren’t there.) Ugh, another 4 hour wait with a million sick people – there isn’t enough face masks in the world. At least Dani slept on me most of the time so she didn’t have to endure the full unpleasantness of it.IMG_2515

Normally Cooper is the best place for us. Dani’s so complicated and they always do a full work up, MRI’s, the whole nine and they ALWAYS admit her and make sure she’s okay before releasing her. This time all they did was a urine sample and physical exam. Of course she hallucinated the entire time she was in the waiting room (all 4 hours! I had to keep my arm behind her head because she kept hitting the wall when she would spasm or shake her head) but rallied when we were in the exam room (this happens every time, they assume since she’s not screaming in pain and being polite, she’s not as bad as she usually is!). They said she had a kidney infection, and a pretty bad one. Gave us antibiotics and said to return in 2-3several days if she’s not better or worsens, given her history of sepsis and abscesses. Dismissed her hallucinations with the amount of meds she’s on. No, she’s usually very alert and just has “waking dreams” when she’s tired. This is different. But no one listens to me.  Wait, what? Seriously? Last time she was in, they kept her several days because her kidney values were so off. But let’s not bother to check that or even do any other blood work.  Just ugh! First time I’m truly disappointed with Cooper.

As we left, she turned to me with her sweet big eyes looking up into mine. She asked “Am I going to be okay? ….Why did she mention sepsis?” Her lip quivered. I took her face in my hands and told her… “Baby… of course you’re going to be okay.” But then my eyes welled up. I began to cry. She needs so much more than I can give her right now. There’s at least 6 specialists I need to schedule her with. There’s no food in the house to nourish her body with. She needs x-rays and blood work done. She needs someone to research new therapies and holistic healing for her. She needs me to be able to work full time to bring in enough money to help pay for her Cobra, rent, meds…She needs me to stay positive. And I can barely get out of bed. It’s not okay. I try to be strong. But it’s not okay.

I should have fought harder for her in the ER.I knew she wasn’t okay and she needed further blood work. But I couldn’t find the words. I couldn’t get them out. My neurological issues were in full swing after sitting in the ER for 4 hours. I couldn’t stop the panic from rising up from all the noise and the crowd. I feel like failed my girl. (I sent a message to her doctor, he ordered lots of out-patient testing the ER should have done ’cause he’s awesome).

I can barely walk some days now. By this time, several hours at the ER, in addition to flu-like symptoms and body pain, I was swaying (and had almost fallen twice) from the ataxia or whatever you want to call it, and I was seeing rings of light around everything. Great. I just want to take care of my love. I want to help her get better. I want to get better myself.

She’s home now, extremely fatigued, experiencing chills and still disoriented (hallucinations disappeared after several antibiotic doses and returned to her normal “awake dreams”). I felt so nervous leaving her home when I went to work. She was too tired to go to nana’s, so I let her sleep.

Most days we keep putting one foot in front of the other. Most days we have joyful moments and make each other laugh.  We are both strong and we keep fighting. But days like yesterday and today… I get angry and frustrated. I feel overwhelmed because I feel so limited when it comes to helping her, keeping the household going, finances, etc. I have a lot of stuff I need to get done for my health now, too. I’m tired. At points in the past few months, she’s been keeping up the house more than I have. More is falling on her than it should.

We strive to not be our illnesses. Everyday Dani says “I just want to sit down and watch TV with my wife.” We take time to just be together. She’s struggling to make it through all the grief from her mom’s passing, too. Dani’s health is pretty  much a full time job for her, for both of us, really. When she should be focusing on healing (She needs sooooo much rest, physical therapy, etc), there are  also specialists to see, prescriptions to track and refill, medical bills to pay, forms to fill out, health insurance companies to fight with,  disability paperwork, hospital payment plans…. It seems like as soon as one stack is gone, another comes in the mail. Anyway, I will need to write another post on the effects of chronic illness because now I’m just rambling!

Good news: I just signed up for an organic produce grocery delivery service starting next week.

AND… WE GOT TEGAN AND SARA TICKETS FOR THE PHILLY SHOW IN NOVEMBER!!!!!!! That’s a big deal for us. If we aren’t better enough to go to that, I might lose it! Dani used to never miss a show, so it’s been hard for her to miss the past several Tegan and Sara, Sleater Kinney and L7 shows.

IMG_2526

This is porcupine, I picked him up while getting Dani’s antibiotics Monday night. His quills pierce infection!

 

Mind Games

As usual, it’s been awhile since I updated.

Dani’s mom’s memorial celebration was on January 30th. It was a beautiful tribute to Martha. Everyone involved did a great job and I know she would be proud. It was a rough day with many tears at the same time. Bittersweet. It was Dani’s first time out in “public” since she got sick. She did well, but of course, slept for 3 days afterward due to exhaustion! I think she was running on adrenaline…which isn’t the best thing when you have adrenal fatigue.  Anyway, so many friends came, we were truly touched by all of you that came, and those that couldn’t that sent kind words. We had an awesome support group of Girl Scouts (as always, love you guys) and of Dani’s dear long time friends (love you guys, thank you so much for all the love and support!!). Dani wrote and read a eulogy/speech of sorts that was incredibly moving (I thought so, at least). We were also lucky enough to have her dear friend Tina write something as well (Thanks, Tina!). Below are some pictures taken by Dani’s sister since I forgot to take any.

IMG_2253

Seems like a good bit of the pictures we have of dani with her mom, this is happening! Trying to remember the good times…

Dani’s been having a rough time with her health but we have hope for improvement. She’s been struggling (of course) with grief and depression since her mom passed. Of course this isn’t good when you’re recovering from shingles and you have issues with your adrenals. Many times I’ve been really scared that she was getting too stressed or upset and was putting her health in jeopardy. But overall, the basic loop is she gets upset and then after that her adrenals crash and she sleeps for a very long time.

Dani’s most recent doctors appointment went pretty well. She’s getting an upper GI series done to see about what’s going on with her stomach pain and edema, a sleep study because, well, she sounds like a train when she sleeps now. Her breathing when she sleep scares the daylights out of me! Also, if we can get her jeep fixed (she’s been okayed for short distances) she will be starting aqua therapy up again to work on healing her back fractures/pain. We are hopeful as she starts her aqua therapy that she can continue to regain more and more mobility and reduce pain. She’s been able to do a lot more recently that were impossible before like tie her shoes while standing, picking things up off the floor, itching her feet, etc. Also, she just got a Dexascan for her osteoporosis. We are hopeful it will tell us her bones are stronger than her last Dexascan in January of 2015. Recently, she hurt her rotator cuff (is that how you spell it?!?) in a minor fall – but she’s getting an x-ray next week for that.

We lowered her Neurontin a bit more again and some of her other meds to hopefully help her be more alert (Which helped somewhat, but we noticed her pain increased too, can’t win!). I continue to be incredibly concerned about her hallucinations so I’m glad her doctor takes our concerns seriously. We know they are all caused by her medication, but we have to slowly with taking her off of them because it’s a delicate balance and they do control her pain. She continues to struggle with SEVERE fatigue as well. You know it’s bad when your Nana teases you about sleeping too much! This is from her meds and from her adrenals.

I’m jumping around a little but I recently took Dani to a naturopathic doctor, too. I’m very hopeful she can help improve Dani’s quality of life and put her back on the road to healing with alternative therapies and supplements along with traditional medicine. I think we need to “hit” her health from all sides! The naturopath mentioned several things for fatigue, pain control, and dealing with menopause that I think will really help. Dani’s appointment for that is next week. YAY!

Also…. it’s been a little scary: Dani is now having low level mild allergic reactions. Basically her face swells up, gets red and her throat constricted a little. I give her benardryl and prednisone and it calms down. We don’t know what causes it. So, that’s scary. We’ll see. I’d rather not think about it right now. Nope. Not going to think about it. More bloodwork being done for that.

Despite all that, when I consider where Dani has come from, health wise, I can’t help but be encouraged. She IS a lot better overall with her back. If we can just get everything else under control? I can’t wait to see what she can do after aqua therapy and physical therapy! Also, it’s been 5 months since her last hospital stay (Quick! EVERYONE knock on wood!).

Anyway, after the memorial has been a blur. Twelve days after, we moved. I vaguely remember setting up the movers. We are glad to move…. it’s good to put the old place behind us, lots of sadness and hard memories. We were only there for 4 and a half months but it seems like a lifetime. The new place is the perfect size for us and exactly what we wanted. We haven’t been able to unpack yet, except a few necessities in the kitchen. Why? Oh…. I’ll talk about that in the next paragraph.

I was pretty sick after the memorial. As you may remember, I struggled a bit in September with  my health… I had some days in October when I couldn’t get out of bed, too. November I felt a little worse but my blood work only showed high inflammation markers. My Lyme doc thought I might be flaring and put me on medication. I got worse. December and I was still functioning, but I was exhausted. That continued. I kept thinking I would get better being on the antibiotic. All through January I took the medication and still didn’t get better. I was sick after the memorial pretty much continually. And then there was packing for moving. I know the activity of packing and cleaning pushed my body over the edge. After I got through that has pretty much been a blur. I spend every weekend (and weeknight as soon as I got home) sleeping, only waking up for water and food (sometimes). I got worse and worse. Neurological symptoms like feeling like my brain was in jello, patches of my body going numb, constant burning on the soles of my feet, feeling like my whole body was buzzing, anxiety, blurry vision, complete and utter exhaustion, spasms in my legs, sweats, severe joint and muscle pain, and heart palpitations.  I have missed a lot of work. I missed a lot of school. I just withdrew from one of my classes. I have days now where I literally cannot move.

IMG_2430

Frenchie for when you don’t feel well.

I called my Lyme doc and said I still wasn’t any better. Of course they said I should be better by now. I was to stop  my current (Lyme-specific) antibiotic and me to come back in to the office. They did testing and sent it off to a high tech lab they hadn’t used before on me. I continued to get worse as I waited for my doctor to call back. They finally did on the third of March. I tested positive for Bartonella (Here’s some more info on it). It’s a Lyme co-infection that can be just as nasty as Lyme. The Dr. put me on an antibiotic that treated it. I started it and immediately began to herx (article on herxheimer reactions) which is basically like the worst hangover in the world combined with the flu and add some anxiety and terrible pain. The following week was horrible. I could barely get out of bed and I missed half a week of work (we won’t talk about how much work I’ve missed already. Not good. I love my job and don’t want to lose it). I finally called my doctor on Thursday when I had the worst leg cramps and severe heart palpitations and chest pain. He told me to stop the antibiotic and “hang tight.” He didn’t want me on any other meds because that was the only one he thought would be effective. WHAT? THIS THING IS EATING MY BRAIN! Seriously. My neurological symptoms are out of control. Clearly, it was time to find a new doctor. Because of how badly I herxed and how advanced my symptoms are it’s likely that I got the Bartonella when I got the Lyme (1998), but it encapsulated itself and waited till now to come out and have a party. From what I’ve read it’s common for Lyme to go into remission and then under severe stress or trauma to the body, the co-infections have a chance to come out and can be just as tough to beat back into remission.

If you aren’t aware, I’ve struggled with Lyme since high school. I got sick with a “summer flu” the summer before my junior year and never got better. When I was 21 I was treated by a specialist in Towson. By the time he diagnosed me and treated me, I was bed bound and my kidneys were shutting down. After that I was able to function and work but continued to struggle. I began to see my current doc in 2008 and slowly got better and finally I went into remission in 2013. This current doctor I feel just tries antibiotics and it’s sort of an ongoing crapshoot. Now with this co-infection, I think I need aggressive treatment.

Additionally, I found out I have a severe Candida infection in my gut along with “leaky gut syndrome,” which is very common with Lyme. I want to get better and stay better. I had a taste of remission and health for a little bit before all the stress hit and I want it back!! After much research I’ve concluded it is possible. It just requires going to a doctor referred to as an “LLMD” (Lyme Literate Medical Doctor). These docs don’t take insurance. I will likely have to travel. It will cost a lot of money we don’t have. But I need to get better. I need to be functional for Dani. I’m tired of struggling with my health and we literally can’t afford for me to be sick. I was able to get an appointment with a DC area doctor in late April, she’s one of the top docs for tick-borne diseases in the country and I was INCREDIBLY lucky to get such a quick appointment due to a cancellation. Here’s a link that explains the Lyme/co-infection debacle: Washington Post Article. My current doctor (that I’m dumping, seriously, I can’t function and you tell me to “hang tight?”) is like Dr. #2 in the article but more watered down. I need a #3, and hope that is what this new doctor will be.

So, amidst all this, poor Dani has had to take some autonomy back. It’s good for her in  a way but it’s not good in the sense that disorder stresses her out and she ends up doing more than she should. She struggles to do the housework on days when I can’t move, more often than not (Not that she should be with her back, but ugh!). We resort to PB&J sandwiches (well, we did until we were given doctors orders to change our diet) a lot. She’s learned to do her own meds, which takes some stress off me. I’m not a fan of Finding Nemo, but I do remember that we have to “just keep swimming” these days. Things have just been really hard. I’m hoping we can get back to a normal “baseline” soon.

Someday, we’ll catch a break. We carry on with the hope that soon we will get our time together. We will get peace and maybe a chance to go out to dinner or walk in the park together again. In my mind, I can see our first date: (I don’t think either of us knew it was a date then) lunch at Saladworks and a walk in the park. Two reasonably healthy people who didn’t know the full extent of what they had. I miss us…

IMG_0049

three months into our relationship 🙂 After lunch at a fancy Thai vegan place with a friend.

 

Two Dogs Come Home

I wrote this post on Thursday, January 29th but am just now posting…

There’s been so much that’s happened since I last posted. It hasn’t been the best of months, obviously. I’ll try to encapsulate everything, but I’m sure I will miss some things.

When I left off last, Dani was recently home from the hospital after her Shingles party. They say it takes 3-6 months to heal from shingles.  “They” are not kidding. After Dani came home from the hospital she was beyond exhausted; she could not stop sleeping. She also struggled with severe side effects from the Neurontin increase (her dose was tripled due to the shingles). Dani was lethargic and not her normal self – her doctor assured me this was from the shingles. Fortunately, her rash began to scab over. Her nerve pain is kept at bay with the cocktail of medications, though it flares up and breaks through when she is stressed.

We began to prepare for Christmas – we didn’t get too far besides a gift for Dani’s mom, Nana and sister. Everyone else was pretty much gift cards. Exhaustion won out over shopping. Christmas was really exciting for us in one sense, though. Our dog, Biscuit, came home. Last year when Dani first became ill, she asked me for a “squishy face.”

She had always wanted a bulldog and felt that since she was home during the day, she needed a buddy. I was worried that the dog would knock her over, pull her over…. step on her and break a bone, etc. I kept saying no, even though I felt like a huge jerk (who says no to a woman with a zillion fractures in her back?). This fall I was talking to our neighbor who has a bulldog. He said, “How about a French Bulldog?” OMG! Why hadn’t I thought about that? I went inside and told Dani. We started looking at adoption websites. We saw a few possibilities and applied. None of them worked out… but I was convinced that there was “our dog” out there somewhere, we just hadn’t found him/her/other preferred pronoun yet. Dani needed more than just a companion, she needed just the right dog to fit her current needs; she needed a soul dog.

Several weeks later, in November, I was trolling the bulldog rescue group websites again and came across a little sweetie who had a fused spine and was on pain medication and prednisone. I said “Honey, how about a Frenchie with spinal problems that also takes prednisone like you?” and she said “YEEEEEEEES!!!” We fell in love with her pictures and story.

IMG_1419

One of the pictures from Biscuit’s adoption profile online.

Dani  made me apply that very minute – I wasn’t even allowed to get up to pee! I had to finish the application first! The process was very thorough but also quick.  We were interviewed and had a long conversation with Biscuit’s foster mom. A home visit was done, and then she was officially ours! We drove to pick Biscuit up from her foster mom a week and a half later. We were just beyond excited to get her several days before Christmas.

 

Biscuit is an absolute delight. She’s so sweet and sleeps with Dani most of the day. Dani is on the couch where she alternates between doing schoolwork and resting. Dani’s current lifestyle fits Biscuit’s needs perfectly. She has all kinds of wonderful little idiosyncrasies, but the best part is she and Dani understand each other.  They are inseparable now though she loves me a lot too! IMG_1812Dani has been through so much in the past month (pah! year). Biscuit has sensed this, and I honestly don’t know what we would have done without her. She burrows into Dani and licks her tears. She has saved us as much as we rescued her.  She’s already a permanent member of the family. Her foster mom has been a huge help, too. In January when things were crazy, she even got us Biscuit’s med refills so we could focus on family matters. Don’t know what we would do without either of them!

We had a wonderful Christmas Eve celebration at Dani’s Aunt Liz’s house. At first, Dani didn’t think she felt well enough to go, but decided to come at the last minute… and I’m so glad she did. We brought Biscuit, too (We were thrilled, we’d only had her for four days and she was soooooo well behaved, great with the kids, nana loved her too!).

It was a much needed injection of family love and normalcy in the midst of craziness and stress. Christmas day Dani didn’t feel well (and neither did I) so we rested. I had been continuing on my new Lyme treatment and though I was starting to feel better, but it sure wasn’t happening quickly.

New Years Eve we had plans to go over to Nana’s, but we were excited to go see Dani’s mom first. Dani hadn’t been able to see her since she was hospitalized with the Shingles as it would be too risky both ways, about 19 days earlier. Dani’s mom had been doing okay when we had seen her previously, making progress in rehab – we had been encouraged. Shortly before Christmastime, Dani got a call from her mom. Her mom bluntly said “Danielle, I’m ready.” She said she was going on hospice. She wanted to come back home with us. Dani was heartbroken that she wasn’t well enough from the Shingles to provide care (not to mention the back surgery less than a month before) and also that her mom couldn’t be around her Shingles to that extent, it was too dangerous. Actually, heartbroken is an understatement. Devastated? Yeah, something like that.

Anyway…. we went to see her mom, she was in the hospice wing of the hospital. Her mom didn’t seem to be doing well. We had a precious visit with her, one that I am so grateful for. Lots of “I love yous,” several important conversations about her wishes, special time Dani got with her mom, holding her hand, resting her head upon her chest…. her mom even got a few jokes in. Dani’s mom even pulled me aside and made me promise to take care of Dani (for the millionth time). We will always treasure that night. We talked with her nurse and learned she wasn’t doing well at all. We were shocked and horrified. Dani was beside herself and devastated. Despite ups and downs previously, in recent years Dani and her mom were best friends. They told each other everything. I felt helpless (yet again) as I watched my love go through more devastation.

That night we went to Nana’s for New Years. No one felt much like celebrating, but we were all glad to be together. (Did I mention Nana adores Biscuit? Biscuit adores Nana, and it’s not just the crumbs she drops!)

IMG_1852

New Years Fire Works!

Throughout the next week, we visited Dani’s mom everyday as much as possible. I watched Dani melt down over and over… my heart broke for her, as her heart broke not only for her mom, herself, but also for Nana, Aunt Liz, and her sisters. My heart broke too. Martha called me her daughter when she referred to me. She accepted me into the family without question and loved me fiercely just like the mother bear she was to her biological children.

Tears come to my eyes as I type this. We didn’t expect this so soon. As recent as November, talks with her doctors told us she wasn’t getting worse. We will probably never understand what happened. I look at my love and I wonder how she’s going to navigate without her mom,without the relationship they had before Martha became ill. I used to tease her for being such a mama’s girl.

Dani’s mom passed on the 7th. That morning, I had a feeling. I rushed Dani out the door while she was puttering around. I knew we needed to be there. We were so blessed to be there when she passed, along with other family members and friends. She was surrounded by love. She had heard I love you from everyone in the room. It was awful, and heart wrenching. But we take solace in knowing she was loved up to the last.

A little side story….when Dani’s mom was in a rehab facility back in August, we brought her a little stuffed Pug. It was actually one of those Webkins, but it was really cute. Dani’s mom named it Pebbles. She loved Pebbles and she went with her wherever she went, to the hospital, every transfer, every time. If you know Dani’s mom, you know her sense of humor. She would talk to Pebbles like it was a real dog. We’d think she’d wasn’t totally with it. Then she’d look at Pebbles and whisper “They think I think you’re a real dog.” I wouldn’t be surprised if she was just screwing with the staff half the time! Then on Thanksgiving and New Years we added BeeBop (also named by Martha) and a Cocker Spaniel.

IMG_1946

Pebbles at the Center

Anyway…. on the 7th, Pebbles came back home with us. She’s now sitting out prominently on our bookshelf. We will take care of her too.

Since Dani’s mom’s passing, it’s been rough. Dani’s been emotionally exhausted and not feeling well. She’s also just beyond heartbroken and devastated. It’s so hard to see her this way and not be able to help. The exhaustion, that’s to be expected, of course. I can’t even remember the past few weekends. I think we just slept. Dani’s mom didn’t want a funeral. She wanted a party, a celebration of her life. So that’s what we’ve planned. It was supposed to be this past Saturday, but there was a blizzard. OF COURSE Martha sent that blizzard! She loved snow… she also loved to get the last laugh! We used to love to talk weather predictions. IMG_2013

Things are busy now. I’m back in school, as is Dani. I almost didn’t go back to classes this semester. Burned out is an understatement. But, I was super excited about the professors I got this semester and the subject matter. Dani also pointed out I only have 3 semesters left, so that’s just one more year after this semester. Okay. I needed to just suck it up and go. I’ll rest this summer. I also recommended Dani take a semester off, but she’s stubborn so that didn’t happen! Also, as of this upcoming week, I am starting a new regimen for my Lyme treatment called pulse therapy. I’ve done it twice before – one time it worked well in helping me feel better, the other I was in bed for weeks. It’s not going so well so far, but we’ll see! Haha.

Oh. And I almost forgot. We’re moving in mid-February. Which means I need to start packing. Reasons for moving is two-fold: 1.) We can’t afford to live here without Dani’s mom being here too as she helped with rent  when she was here 2.) and more importantly, Dani literally cannot go into any of the bedrooms because she thinks of her mom and has a breakdown. No point in having a three bedroom apartment when you can’t go in the bedrooms!! We are staying in the same complex since we really like the location, just a smaller unit – still on the first floor, though! So, that’s going to be exhausting – but I think it will be good to have a fresh start, too.

On a positive note, it’s been 46 days since Dani’s been in the hospital!!!! Considering this past year, that’s pretty darn good. Quick, everyone knock on wood!!

IMG_1934

My name’s Biscuit and I don’t like when you read, text, talk on the phone, or use your computer!!!!

Several times a day, Dani says something that cracks me up. I will share the occasional one that I remember:

Dani’s Quote of the Post: “They’re f***ing cloning things now. You’d think [McDonald’s] could make an effective cup holder.”

Let’s Put Our Emotions in Motion

So, it’s been a long time since I wrote last. Everything has pretty much been a blur of running around like crazy and stress. Lots of stress.

Anyway…. To catch everyone up a little bit on things.

Dani had her surgery on the 20th of November. She was originally going to have surgery on her thoracic fractures (T9, T8). In the beginning of November she felt a pop in her lumbar region. Oh no…. she kept saying maybe I just pulled something (that hurts like HELL).  I said “honey, it’s never good when you feel a pop.” Hah. I called her Neurosurgeon’s nurse and her surgeon wanted  to get an MRI. You know, maybe he can fix a new one while he’s in there… 2 for 1? So, we went through the hoops to get an MRI two days before the surgery. We brought the disk in with us the morning of the surgery.

The surgeon came in to meet with us that morning, looked at the disk and said “Oh so is your pain around the L5 area?” He’s a funny guy – you had to be there – she did have a new severe fracture in the L5 area. We decided to have all the fractures operated on to try to relieve Dani’s back pain.

The surgery went well, the surgeon expanded  Dani’s compression fractures with a balloon and filled it with bone cement, called a Kyphoplasty.

Unfortunately, they couldn’t get Dani’s pain under control for several hours after the surgery. They kept her in the Post Surgical Unit about 8 hours longer than normal to try to get it under control. Dani seems to just be extremely inflamed and anything extra like surgery just upsets everything I suppose. I left for work after she was out of surgery but I left a new friend with her so she’d know I was there. That’s Cinder the dragon. He’s perfect for hospitals because he’s mostly a shiny material that can be wiped down! IMG_1355 (2)Dani had a lot of surgical pain after the surgery but she could absolutely tell the difference. After about 10 days she was feeling a lot better. Keep in mind she has many other fractures all in different stages of healing that still cause significant pain but at least the “fresh” ones were taken care of now.

And one of the coolest things? Dani got some height back! Not a ton… but probably about an inch or a little more of the 5 inches she’s lost. YAY!

Thanksgiving happened. I had been experiencing yet another Lyme flare and missed work and class off and on throughout November. It’s tough when there’s a lot going on. The only thing you can do for a flare is rest, don’t stress, and sometimes switch antibiotics. My doc says “Stress is a spirochete’s best friend.” So I tried to relax… We ended up having Thanksgiving a few days after. Dani’s family had gone out of state and I wasn’t up to the drive to my family so we just celebrated ourselves. It was a nice day (a Saturday!). There was lots of food and there was Netflix. IMG_1423

I took Dani to her neurosurgeon’s follow up two weeks after the surgery. She’s lucky to one she really likes. I asked him the question I ask all her doctors. But to my surprise, he actually answered them as best he could. I asked him if this would just keep happening. I asked about her bones. I asked about her risk of spinal cord injury in the future. He pulled up the MRI he had from right before her surgery. “You see these top two vertebrae? These two aren’t broken.” Basically, he showed us what the unbroken ones looked like and the different levels of severity and healing on all the other vertebrae. He explained that the hope is that vertebrae that are already fractured won’t fracture again. Once they have started to heal, now we can try to get the bones stronger by excising. He showed us her spinal cord. All her paperwork says “compression with spinal cord injury.” The previous fractures have healed well and her spinal cord is still nicely intact. He explained the future risks and said “Don’t do anything stupid.” If she gets new compression fractures, especially in vertebrae that have already fractured, her risk of spinal cord injury is very high. Okay…. so…. that’s good. Physical therapy. Getting stronger. Being careful. Bones are fragile. Got it. We left feeling encouraged. Dani got a script to begin aquatic therapy again.

Meanwhile, both Dani and I scrambled as our classes final assignments began to loom. We have some family stress happening with Dani’s family. I can’t go into it on this public forum at this time but it’s a constant, almost daily extremely explosive stressful situation. Which is great when you are already prone to anxiety and panic attacks. Fun. Dani’s health stuff is very stressful, but this other situation adds to it exponentially. If Dani’s health, finances and school was all we had to worry about… I’d probably never complain about stress again. It definitely teaches you a lot about perspective. I look back and think about how I used to stress about things like work and healing emotionally after my divorce. Can I go  back to stressing about that stuff again please? But it’s important to remember that I still need to be grateful even in this situation. It feels like I’m going to completely melt down… but it can always be so much worse. I always try to remember that.

I went to my Lyme doc in the beginning of December and went on a new (expensive) med to try to get my flare under control. My goal is to get back into remission. I was in remission from 2013 until March of this year, so I know it’s possible. The new med caused a Herxheimer Reaction which was tough. The first week I could barely move and had to miss work. I’m starting to feel somewhat better now, as long as I’m careful to conserve my energy.

In mid-December, after a particularly stressful week with aforementioned stress, I noticed Dani was sleeping ALL THE TIME. I chalked it up to the recent surgery. Then she began to have sensitivity to light and sound. About a week after we went to see the neurosurgeon, Dani showed me a small lesion on her skin. It looked like a bug bite. I said as much. That night she had two and severe pain in her side. Then she had a patch of the lesions. Hmmm. I thought. Shingles is supposed to be painful, right? I googled pictures and symptoms. Oh crap. Let’s go to the Urgent Care.

We went and they gave her an antiviral. That was around 3pm. By midnight that night the skin rash had spread around her whole torso and she was screaming in pain. Shingles, if you aren’t familiar, CAN cause severe nerve pain. Dani has been through a lot of pain in her life – and even when I took her to the hospital for 14 compression fractures in her back, that was more of a whimpering with tears. This was agony. I’ve never heard anything like it. I took her to Cooper that Wednesday night. The wait in the waiting room (fortunately she doesn’t remember much) was awful. She was crying, moaning and occasionally screaming in pain. She looked at me several times with bleary eyes and told me she couldn’t take it anymore. I’ve never felt so helpless in my whole life.

I couldn’t do anything to help her. She was in so much pain she began to vomit repeatedly. We had to wait about 2 hours, which is decent for Cooper. But as always, it’s worth it for the amazing care received. Dani had an amazing, caring nurse and several good doctors. They immediately admitted her for pain control and controlled her pain (after some more rounds of vomiting) and gave her anti-nausea meds. I left at 5 am so I could sleep for an hour and a half and then go to work.

Dani’s pain from the shingles raged out of control. Pain Management came to see her several times and tried several combinations. Each time they would back off the IV meds or if her nurse was late bringing a dose, she would vomit from pain.

She couldn’t even function – she couldn’t text me, she didn’t even turn on the tv in the hospital room. By Saturday they increased her Neurontin super high (more than tripled her normal dosage she had for her back pain), among other medications. She was finally at a point where she could speak.

However, she wasn’t released because there was a problem with her kidneys. She waited two more days as they tried to get her Creatine numbers lower. She had been on a liquid diet and was switched to food…. woohoo! I took a screenshot of the below conversation on Saturday when she was supposed to get her first real food… Poor chicken. IMG_1583

Finally, Dani’s kidney numbers got in a safer range and she was released. The pain is still there but much more controlled thanks to all the Neurontin, etc. Dani says she’s actually scared of this pain – it’s so different from what she’s used to experiencing. We are super aware that Shingles is made worse from stress. So… we’re trying to keep it to a dull roar as best we can….IMG_1592

So…. Now she’s home. She’s resting a lot and trying to keep the pain at bay. She’s exhausted but at least the shingles finally stopped spreading after a few days home from the hospital. The doctors she saw said she had one of the worst “torso cases” they’d seen. Aren’t you glad I’m not posting pictures of the rash??!!

I finished up my semester. I was positive I was going to fail my one class but somehow managed to scrape out a B. Go figure. My other class, my professor had mercy on me and is allowing me to finish my final paper over the break, but everything else is turned in.

Dani is currently scrambling to finish her schoolwork. She would have been fine this semester if she hadn’t gotten shingles. The pain kept her from focusing and then the Neurontin kept her from being able to to work for long periods of time. Sigh. School means the world to her right now. That’s my girl. She has to feel like she’s doing something to further herself.

On top of all that, we applied for  a sweet little French Bulldog rescue. She’s lovely and the best possible thing I could have done for Dani and her emotional well being. More on her on the next post!

********

Dani’s Quote of the Post:

This quote happened when I was packing up to take her to the hospital for the shingles. She whined “I just want to feel better so I can put together my Abraham Lincoln Legos and do my homework!”