The Adventures of Couch Guy and Crackity Bones Girl

Posted by Nikki DiSalvo on

Oof! What a month it's been! Derek has been sick with a mystery illness for almost a whole month now. It has kept him basically bed/couch bound and has given him a huge array of symptoms, all beginning with an extended migraine. After a plethora of doctor's visits, a hospital visit, and a ton of testing, we finally found out that he has Mono.

Apparently it's worse when you're an adult, and it certainly seems that way judging by how completely wiped out he's been. It was getting pretty scary for a while when we didn't know what was keeping him so sick for so long. He's lost at least 10lbs that he definitely didn't need to lose. He was starting to have a similar experience to what I've gone through, feeling like doctors were thinking you're crazy. It was such a relief to finally find out what was going on. He's still pretty sick, but he's making some progress toward not being Couch Guy anymore. 

One good thing was that I was on a bit of an upswing health-wise when Derek got sick. I even played a one-day two round disc golf tournament a couple weeks ago! I played horribly the first round at Jones East and then got my shit together a little to shoot a score I was pretty happy with at West. I ended up coming in third, but just by a stroke. I was super proud that I even finished, especially since it was pouring rain for a lot of the day. 

Very. Very. Soaked. But happy 😊

For a little over a month things have been pretty good for me. I was able to get out and golf like 5 times in two weeks, which is awesome for me. I was loving it. My itching/burning/flushing has been more under control for the past several months with the addition of Singulair at night, although we still don't know why it happened in the first place. So now I'm doing Zyrtec and Zantac both twice a day and Singular just at night (along with all my supplements and the Levothyroxine that I take when I wake up in the middle of the night). The immunologist's plan is to take me off all three meds once the symptoms are completely under control for a month.Hopefully they don't return.

A few months ago I was having a lot of chest pain that was diagnosed as pleurisy caused by a viral infection. It got better with time, but the pain has been there on and off ever since. Don't tell anyone, but sometimes I just can't even anymore. I can't keep going to doctors and getting either no answers or getting treatments that don't really solve the problem. Or that cause side effects worse than the original problem. Like how taking Toradol for a skin infection either caused or aggravated an ulcer. That was very painful and I had to eat bland/plain food for a bunch of weeks. I'd rather have the skin infection, thanks! I think I've sort of gotten used to this pain in my chest that comes and goes; I actually think it might be Babesia-related, so my regular doctor most likely won't know what to do about it anyways. 

It bothers me that doctors aren't better about looking into the conditions their patients have when they don't really understand them. To me, that's part of the job. When I'm seeing clients and I don't know enough about a diagnosis they carry or even when they have a certain cultural practice that I'm not knowledgeable about, I look it up! It's frustrating when you have to explain Lyme over and over again to your doctor and tell them how it might be interacting with other problems you're having and they either metaphorically give you a pat on the head and/or completely forget what you said the next time you see them. I have an appointment scheduled with a Lyme specialist, but since our finances have not been pretty lately I had to put it off until December. At least when I see an LLMD they generally know as much as I do about Lyme and co-infections so we can actually have a meaningful conversation about it. If you know someone who needs to see a Lyme Literate MD this link is a great resource to find someone who is associated with ILADS (International Lyme and Associated  Diseases Society) in your area. 

So this week has been a little rough for me. Monday I had a Lyme attack just a few minutes after I walked in the door from work. It was the kind where I couldn't really talk or move, similar to the video of me that we shared on our Lyme Warrior DG Facebook page. I guess since it is already out there I can share it here too. There have been quite a few people who said that the video either helped open their eyes to Lyme or helped them get themselves or someone else diagnosed. As much as I hate having myself exposed in this way, I understand how it helps people and that makes it worth it. I took the video just to have documentation to show my doctor, but when Derek saw it he thought that it would be useful to other people. In the end I think he was right, but it was a really hard decision at the time. I have a tough enough time telling it how it really is on my blog, so the video felt super personal. 

I am totally aware that this is not pretty. I don't love it. But it's about as real as it gets. I've described in more detail what it feels like in previous posts.

Anyways, I slept a bunch Monday night after the attack and was okay to work Tuesday morning. Then Wednesday my body went crazy and got progressively more and more sore and achy all over. Then the chills started and I knew it was time to get in bed. Then the real fun began. My whole body started cramping up from head to toe. Literally, head to toe--my jaw, neck, arms and hands, shoulders, back, torso muscles, butt, thighs, knees (weird!), shins, calves, and feet--all cramping up in waves. Derek was frantically moving from part to part, trying to massage out the muscles while I was making crazy involuntary yowling noises. It's bad enough to get a horrible shin cramp, but this was ridiculous. I was shaking all over, spasming and twitching. I would guess it lasted somewhere around five minutes before the major cramping started to subside. That was some sweeeet relief, let me tell you! I pretty much felt like I had been battered by a bear afterward, but it was still better than the cramping. The episode reminded me a lot of the attacks I used to have a few years ago before I was diagnosed, and that scares me a little. I didn't drink as much water that day as I usually do though, so I'm just going to put it down to that for now. I've been bartending more at work as opposed to serving, and for whatever reason I forget to drink water when I'm behind the bar. For which Derek made fun of me, asking how I can forget to drink when I'm surrounded by liquid. Dunno. 

Luckily I had Thursday off of work and I was able to rest for pretty much the whole day. I ran some errands in the morning, made a big batch of soup, folded some laundry, and then retreated to my bed for most of the rest of the day. Homework should have been done, but it just wasn't. It was the kind of day where I was very much aware of being on the edge of not okay and I had to respect that. I haven't had full body pain like this in a long time. It has been a constant companion since Wednesday, along with bones/joints/whatever that won't stop cracking with every move I make. I don't know what the connection is, but sometimes those cracks are really loud and painful, especially in my hips and back. I had almost forgotten what it's like to be so uncomfortable that you don't know whether to get up and move around to distract yourself or just try to lay as still as possible. It's mostly at night that the bone-deep pain starts, but it's there to a lesser degree during the day too. I rely a lot on my cozy things at times like this (soft warm sweaters and blankets, fluffy pillows, NO bra...etc). I also built a little homework nest in our guest room so I can be as comfy as possible while I try to get through all the reading, discussion posts (big thumbs down, hate discussion posts), and papers that come with grad school. This nest is a little ridiculous. Seven big pillows topped by a fluffy comforter and another soft blanket over it all. I love it. 


I've also been using an infrared sauna at least once a week, but I can't tell if it's helping or making things worse. I think I've been going for a little over two months. Sometimes I use it and feel great after and then other times I come out with all my energy drained. And I pretty much just sit there. The sauna has a tv to play yoga videos on (they call it Fit Burn), but I don't think my body can handle yoga in 140 degrees right now. So I might do a little light stretching or a quick vinyasa, but usually I just sit and meditate. A lot of people in the Lyme community swear by their use of infrared saunas as part of treatment though, so I'll probably keep it up for at least a little longer. Plus I'm kind of looking forward to getting all warmed up when the weather gets colder. Maybe I should go for less than the half an hour that the place allows for. But the cheapster in me feels like I'm not getting my money's worth if I dip out early! 

So this is my last semester before things get real crazy. Starting in January I'll be doing my internship at a community mental health center 45 minutes away for about 16 hours a week. Plus serving and bartending. And still taking a full course load. And trying to keep my stress level low enough that I don't make myself sick and unable to keep all these commitments. That too.When I met with my advisor we worked out my schedule for the rest of my grad program and I'll be graduating in December 2018. We also decided that I may as well do all the coursework I need to be a Licensed Addictions Counselor as well as get experience supervising others so I can become a Licensed Clinical Professional Counselor as opposed to a Licensed Professional Counselor. It's a lot. But I have to remember two things, 1) I love what I'm doing and relish all the experience I'm getting and connections I'm making and 2) it's only for another year. I can do anything for just a year. Maybe in the future I'll decide to go on and get my PhD, but I plan on finding a job in the field and practicing for a few years first at least. After seven years of college, I'm ready for a little break. I'm looking forward to having the time to read and write for pleasure. I have a ton of short stories rattling around in my head and a bunch of others that I've written but that I need to roll my sleeves up and give a good edit. 

With the holidays coming up, I'm really missing our family in NY. Being so far away is a lot harder than I thought it would be. And it's so damn expensive to fly home to visit! For some reason I really miss my sisters around Halloween time, maybe even more than any other holiday. I'm preparing myself for the fact that we won't be with our families again this year for Thanksgiving or Christmas. But hey, at least this year Derek won't be in jail the day before Christmas! There was an insurance mix up with our car registrations last year (thanks, State Farm) and it resulted in a pretty traumatizing experience for Derek. Who knew they took you to jail for a paperwork error!? And not just like sitting in a holding cell, they threw him right into the general population. So yeah, this year is bound to be better than last! We also have made more connections and friendships here in Emporia, so I don't think it will feel quite as lonely around the holidays as it did last year. Last year I had some tears about it, for sure. I might again this year, but maybe not as many. Okay, probably just as many. Also, our friends Denise and Eric are always there to boost our spirits when we're feeling homesick. I can't even imagine not having them here. They definitely help make this feel like home. And of course, home is wherever my Derek and Flint are!

My Bday brunch with our found family 💗

Sometimes I forget what people do and don't know about what it's like living with Lyme. So if you have questions or suggestions for things you would want me to address feel free to leave a comment or send me a message on Facebook. I'm always striving to be more open and honest about this illness, so anything goes pretty much. 

Be Well,