Hidden Struggles Behind the Smile: Living with Unexpected Chronic Pain

A single tick bite in July 2023 changed everything. What began as a hopeful retirement transition into full-time artistry and business ownership has evolved into an unexpected battle with chronic pain and debilitating joint inflammation.

When I woke up one morning unable to move my neck, then months later found myself completely immobilized with swollen hands and wrists, my world turned upside down. The diagnosis finally came: stage four long-term Lyme disease. For someone whose livelihood and passion depend on the ability to hold a pen, paintbrush, or knitting yarns, this revelation was devastating. How do you continue creating when your hands—your primary tools—betray you?

The journey has been humbling. From the initial misdiagnosis (just need a new pillow!) to the parade of specialists, treatments, and testing, I've learned that our bodies can change our plans in an instant. Yet through it all, I've discovered the power of persistence, the importance of community, and the absolute necessity of transparency. Behind every smile in my store lies a story of morning medication rituals, compression gloves, and the constant negotiation between creative ambition and physical limitation.

My experience offers a crucial lesson: if you're ever bitten by a tick, don't wait for the bullseye rash. Push for immediate testing and treatment—it could save you years of suffering. As I navigate this unexpected chapter while preparing for my daughter's wedding and my husband's art exhibition, I'm learning to redefine success and embrace a new normal. Have you ever faced an unexpected health crisis that threatened your dreams? How did you adapt when life threw you its cruelest curveball?

Chapters

• 0:06 Welcome and Introduction
• 0:36 Unexpected Health Challenges
• 2:37 Discovering Lyme Disease
• 5:50 Specialist Appointments and Joint Pain
• 9:33 Mental Struggles and Support System
• 14:26 Looking Forward Despite Challenges

Transcript

Speaker 1: 0:06

Hello everyone, welcome back to Brutally Made. I'm glad that I am closing out this month of August a little bit more consistent on the recordings. I am here in my studio and I am happy to be with you today. I wanted to talk a little bit about unexpected things that happen when you have the best made plans kind of set out for a journey. It has kind of hit me a little bit and it has to do with my health and I have not been able to doodle like I've been wanting to or what I have in the past and shared as the premise of this whole podcast, because of some joint issues that I've been having and I talk a lot with my hands and I have these beautiful little compression gloves on. Right now. I have been dealing with severe joint pain that has been plaguing me for a little while and it has been found out it is stemming from Lyme disease. So I have not been doodling just because I really can't grip a pen, a pencil, a paintbrush for very long and it is really difficult for me to do things for a long amount of time and doodling takes a while. So I mean you can start and stop, but I yeah, I have not been sharing that. Just because of that and so it's something that I had not realized I had I was bit by a tick in 23.

Speaker 1: 1:55

It was July of 23. It was on my elbow and I took a picture of it and contacted my doctor and we watched for a bullseye to develop and nothing did and didn't really feel like it affected me. Fast forward to April of last year. We were getting ready to go to see our children in Seattle and I woke up one morning and I could not move my head. I could not lift my neck or look down. You know how you can touch your chin to your chest. That was one of the signs for like meningitis. I couldn't do that and I couldn't turn left or right real easily, it just really hurt. So I contacted my doctor and I went in and I told her what I thought. So they took blood work and they were erring on the side that maybe I just needed a new pillow or maybe I slept wrong that night because it was just so sudden, but we were leaving within days to go visit our kids. So they gave me some muscle relaxers to try to make me relax, to be able to be on the plane and be more comfortable and do blood work. That blood work came back while I was gone and the white cells were really elevated. So they gave me just amoxicillin. They said it must be fighting something, but they still thought I needed to get a new pillow. I got a massage. I was just trying everything to get some relief and eventually it just kind of subsided. It didn't completely go away. Once in a while I'd still really have a hard time like turning. So I have so many pillows because I was trying so many.

Speaker 1: 3:35

Then in November of last year I have a whole team of specialists, just because I have been going through quite a journey full disclosure of menopause for 11 years now and it has affected me immensely Organs, health, everything you can think of. It has just been wreaking havoc on my body and so I have an endocrinologist, because at one time I was really deep into type two diabetes. So my endo I see like every six months and he prescribed Boniva because they did a bone density test and he said you know, you're going to looks like go right into osteoporosis or it's like a preventative thing, so we're going to put you on this. So I started that and on my fifth dose. I woke up in May and I couldn't move, I could not lift my arms, I could not close my hands, I couldn't walk. It was so sudden, just like the neck pain, and it hurt all over, and it was about three to five days after I had taken that dose. So I was just convinced that there was something in that medicine that I was having a severe reaction to, because joint pain was one of the reactions, one of the side effects.

Speaker 1: 4:55

So I stopped taking it and I had an appointment with them and they were like, yeah, you can stop it. And I said I did. I haven't taken it for it was like eight weeks and I said, but I am so sore I still can't move. It's not helping being off of it. I said I looked into like bioidentical hormone therapy I'm just like struggling here. And they said, well, there's nothing that we can do. You're gonna have to go to your PCP, which I love, my PCP. I have a new one from about three or four years ago when I started on this whole health journey of getting things in order with this menopause.

Speaker 1: 5:35

So go to her and see she's always saying that she's like playing catch up with me, but I swear I've just tried to do things in the right order. And she starts taking blood work and she's just like I, you know, can get you steroids and we're going to get you on doxycycline because your blood work has come back and you have like stage four, long-term Lyme, whatever you want to call it. My acute numbers were not there, but it was the long-term that were like off the charts. And so they put me on doxycycline and I had been on it for about two weeks and steroids and nothing was helping my I still could not move my arms, I still could not move my hands. I still have joint pain in my legs. It's going radiating into my shoulders and back. I mean, it is just everywhere. And so she's just at her wit's end. She's just like I cannot believe that your inflammation, my hands are swollen, my fingers are swollen, my wrists are swollen, and she's like I cannot believe that this steroid did not do anything yet. And so we revamped it again and got more in me. And so we revamped it again and got more in me. So I'm starting more, finishing off this doxy.

Speaker 1: 6:52

But I had to get a infectious disease doctor and a rheumatologist because of just all of the joint issues. They started taking x-rays on my hands and x-rays on my wrists and things are coming back with this like crazy inflammation. Yeah, that is on one hand. That is not my dominant hand. That I don't draw with is worse than my right hand, but my right hand's inflammation and swelling is way more prevalent, but the x-rays show opposite. It's so strange. So, yeah, so now I am dealing with two more specialists into my health care journey, two more specialists into my healthcare journey, and this was not on my bingo card for retirement and opening a store and being a full-time artist.

Speaker 1: 7:36

It has been a huge struggle. I have literally worked through the pain with a smile on my face, as much as I can and with the help of my husband and with friends, and I can't even imagine how you process planning for something like this, especially when you use your hands like I do for your work, and making me like realize, oh my gosh, what am I going to do if I can't visually show somebody how to do something? It's been really difficult and I really wonder how many other people deal with these. I've never had chronic pain and this has just been super difficult, so hard and hurts so, so much, and I'm just thinking back, man, in May I drove to Kentucky by myself and I went to this wonderful art retreat and did yoga. It was just like this light switch went off and I literally, you know, struggle to move.

Speaker 1: 8:45

My husband has my medicine sitting in a little cup for me so I can get up at like I don't know, 2.30, 3 am and take it. So it literally sits in my system for about three or four hours so I can move when I get up in the morning and just trying to get a little extra rest and trying to manage, you know, moving slower, and that is not me, I don't move slow. This is very hard. So just full transparency. You know things aren't 100% beautiful. You know roses and paintbrushes every day and smiles are really hiding a lot of struggle and you know perseverance and pain, a lot of struggle. And you know perseverance and pain and I, you know, hope I can get some answers.

Speaker 1: 9:35

Thank goodness that when I called these doctors the original appointments were until like October and November and I just kind of asked is there a cancellation list that I can be on? I will take whatever comes up? And one doctor immediately called back within, I would say less than an hour, and had a cancellation for next week. And I took it. And then the other doctor's scheduler. As soon as I said that, she's like, well, we just had one for next week, I'm like, take, I'll take it, I'll do it and, you know, with the help of friends who will help me, like, watch the store while I'm gone, I'll be able to make those appointments and it's just been out of the blue.

Speaker 1: 10:16

You know, how do you plan for these things? How do you? I mean I didn't want to act like nothing wrong would happen. I mean I know there's going to be struggles, but this was huge for me. I mean this affects what I want to do in my new career and full time and I do everything from sewing to hand knitting, to designing to painting. I have a mural to paint and it's just blindsided me. So how do you mentally prepare for handling those kinds of stressors? And you know, what have you done when those things have happened? I would love some guidance. I would love to hear how you're tackling anything that you just you know, kind of thought could happen but really didn't plan for it.

Speaker 1: 11:08

And if you have Lyme disease, like now I have, if that is something you have dealt with. I had so many wonderful friends and family contact me with doctors, heliopathic medicine, treatments in other countries. There's just been a slew of suggestions on how to handle this and what to do and who to see and how to get treatment and how to manage this. I mean, it's so long term. I've had this for a while, my long term numbers are so high, my inflammation numbers are horrendous and it just is. I mean, going back to what has happened, I feel like I know what has like caused these triggers I guess more or less to bring this up, I think.

Speaker 1: 11:58

But yeah, it's just been crazy, you know, incredibly difficult, because I was feeling so good and I was like all ready and mentally and physically prepared to like do this and tackle this. And I mean, I am someone that loves to help and fix things and be there when somebody needs help and want to be the one that answers the call. And it's just been really hard. I don't know how to handle that part too. It mentally wakes me up in the middle of the night and keeps me thinking of what can I do to manage my day, to get things done, because my list is huge and I want to not break a commitment and I want to make sure that I stay true to my word and I want this to be a success. I has to be. I mean this is what I'm doing and so I'm here every day, I'm showing up, and I couldn't do it without the help of Brian. I mean I really couldn't. He has just been helping me left and right as much as he can, couldn't. He has just been helping me left and right as much as he can and friends and family that have sent me messages and suggestions on what to do. I mean I have a lot of family in the medical fields and so they've been very kind and just and people who had Lyme and told me what their stories were and how soon they got detected, and that's been huge.

Speaker 1: 13:28

If you get bit, I mean just press for that test then. Or medicine. I mean don't wait. We should have never defaulted to a bullseye. We should have treated it immediately. I had the tick. We could have tested the tick. I mean we really should have, and I'd never been bitten.

Speaker 1: 13:50

I guess when I was tiny, when I was a little girl, my mom said I was, but I don't remember that this was, I mean, just affected me so hard. So just wanted to share those thoughts and explain why there haven't been any doodles and explain why my hair looks the way that it does, because I really can't put my arms up to fix it more than a few seconds, so a little braid is about all I can do. It's yeah, it's been a struggle, but I'm getting through it and I am bound and determined to work through this pain. I'll continue to work through this pain and get some treatment, and I'm anxious to see what these specialists have to say. So hopefully I'll have a better update next week because I will have seen both of them and I'll be able to share that update. So I hope you have a wonderful weekend.

Speaker 1: 14:49

This is the end of August and we are going into Labor Day. We are closed here at the shop on Labor Day because I need a break, a day of rest, and it really isn't a day of rest because Brian, my husband, is the exhibiting artist for September and we are installing his show and I have a mural to paint. So it'll be nice to be able to concentrate on those two things and get them done and, yeah, get ready for the month and we have a big event happening Our daughter is getting married in the middle of September in Seattle, so I'm very excited about that. So just a lot happening and a lot to share and a lot to celebrate and a lot to work through.

Speaker 1: 15:31

So you never know what somebody is dealing with, even if they're smiling as wide as they can, it's sometimes, you know, hard to think. It's easy to think that everything is always just so bubbly and perfect, and it is not, and I just wanted to share that. It's okay to struggle and it's okay to take a breath, but it's also okay to be kind of fearful because you didn't plan for something like this to happen. It's also okay to be kind of fearful because you didn't plan for something like this to happen, so I'm still very grateful that it's something that I can probably take some medicine for and manage, so that I am grateful for. I'm anxious to see, though, what these other doctors happen to find and share with you. All right, have a wonderful weekend and enjoy the holiday If you're celebrating a Labor Day weekend, and I will talk to you next time. Bye.