What Does Chronic Illness Look Like?

 

Receiving a diagnosis for Ehlers-Danlos Syndrome is only the first step in what often feels like a never-ending cycle of questions, appointments, tests, more appointments (with long wait times), and then more waiting. So much waiting…

Have I mentioned the waiting?

Looking at myself in the mirror the day after my diagnosis, it occurred to me that while I had an answer, a verification, an acknowledgment of my frustrations, I did not look any different. It was still just me staring back from the reflection in the glass.

It didn’t take me long to tire of trying to explain at various appointments what Ehlers-Danlos syndrome means, what my concerns are for that particular visit, and to realize I would still receive doubt and dismissal from people even with my official diagnosis. Because I don’t “look sick” on the outside, I need a way to explain what living with EDS means for me.

Ehlers-Danlos looks like:

• Random anxiety spiking for no discernible reason.
• Feeling weak if I admit to feeling anxious.
• Being overwhelmed and teary-eyed because I am tired but still have so much work to do.
• Brain fog when my job requires me to be sharp 24/7.
• Not wanting to slow down in case I can’t rev up the energy again.
• Disinterest in food but having to eat.
• Recalling the time I confided in a coworker I was very clumsy then being told that it would get better if I just “slowed down” more. No, she wasn’t a doctor, just a jerk.
• Being exhausted at 6:00 pm then unable to sleep at 10, 11, 12, 1…
• Falling asleep but waking up again and not being able to find a comfortable position to go back to sleep.
• Being proud of myself that I wrestled a 360 mattress cover onto the bed, then my joints hurting for two days.
• Cycling through the relief of finally having a diagnosis, then having the whispering voice in the back of my brain telling me someone will “take it away” from me.
• People questioning if I have the right diagnosis — even doctors.
• Thinking people won’t believe me because I cannot prove it with a test.
• Not knowing if I can talk about this in my everyday life.
• Then not knowing who I can talk to about it.
• Wondering if I find someone with EDS, if they will measure their EDS against mine and dismiss me because they have it worse. Why must people always measure?
• Having so many questions and no one to talk to who can answer.
• Wanting to embrace my diagnosis but mentioning it to people who promptly dismiss it like you never said it, while you’ve tried hard to be engaged and interested in their health issues.
• Realizing I have a diagnosis but don’t know where to go from here.
• Second-guessing myself on any decisions to move forward and dreading the process.
• Feeling alone because this diagnosis feels revolutionary to me, but no one else gets it… or cares.
• People turning any conversation about my diagnosis into, “Well, I have that. I’ve had that. That’s not a big deal. Lots of people have that. I wonder if I have EDS since I have that symptom.”
• Others measuring because people compare their chronic illness to yours, claiming they have it “so much worse.”
• Fighting to continue the same way of life because I don’t want to be viewed as weak and trying to prove I can still do all the things.
• All the well-meaning people who tell me to give myself grace and to listen to my body, then turn around and give me a list of things they need and want ASAP.
• Once again desperately wishing for someone to talk to about it while also not wanting to talk about it.

But most of all, Ehlers-Danlos syndrome looks like… me. Average, blending in on the outside but tired and scared and anxious on the inside. 

"You're Not A Hypochondriac. This Is Real."

"You're not a hypochondriac. This is real."

This quote accompanies several emotions varying with the moment each time it crosses my mind. Receiving a diagnosis after many years of unexplained conditions comes with a surreal feeling. Wes and several others asked me how I felt finally knowing, and the truth is...

 I'm not really sure.

The geneticist appointment originally had a six month wait. Six months, you guys. We shouldn't be waiting six months for appointments with specialists, but what can we do when there aren't other options? I asked the receptionist to *please* add me to a cancellation list without believing she would ever think about me again. I was wrong because she called me six weeks later with an opening, and I jumped at the chance. While I would normally be ecstatic for the chance at a TeleHealth appointment, some of the things required for this exam were less than ideal in this form...but I did it anyway after setting some hard boundaries with the doctor and genetic counselor. I felt like a performing monkey, but by the end of the appointment I had a diagnosis. Decades worth of issues, feeling like a hypochondriac, hiding symptoms, and pretending everything was manageable and fine culminated into two sentences that, while they didn't change the course of my life, they connected things in a way I never dreamed would be the truth. 

"You're not a hypochondriac. This is real." was the first thing he said after putting me through the paces of a TeleHealth "exam". Then he proceeded to explain the long list of symptoms I'd lived with for years—some most of my life—was due to a disorder called Ehlers-
Danlos Syndrome. The simple answer is, it's a disease that weakens the connective tissues of your body. The full answer is there's an extensive laundry list of things that vary for every person. The short version of mine are fun things like dysautonomia (a disorder of the autonomic nervous system), subluxation of joints (partial dislocations), slow healing, bruising, skin changes, adhesive allergies, ovarian torsions, interstitial cystitis, migrating joint pain, pelvic floor spasms, not sweating during exercise, interrupted sleep, nausea, and blah blah blah...I'm boring myself now, but you get the idea. 

The point of this blog isn't to drone on about my symptoms. It's truly about self-advocacy, which is the ability to speak up for yourself about the things that are important to you. Many of us are well-suited to advocate for others, yet we hold back doing so for ourselves. Why? I can only answer for myself:

• I trend towards being a people pleaser and didn't want to be labeled as that patient.  When doctors brushed off my concerns, or in my case when one refused to even look at my problems, I didn't push harder. I was so baffled and didn't want to upset her, I walked away without being able to voice even half my concerns. Come to find out, they were EXTREMELY relevant to Ehlers-Danlos Syndrome, and she had an opportunity to be an important part of my journey. She failed because she wouldn't listen. I failed myself because I didn't push harder to make her to listen.

• I didn't want to be a pest. For many years, the only doctor I had was my OBGYN, whom I adore. She did four of my seven abdominal surgeries, always listened attentively, and she actively attempted to find answers for me. I shied away from what I saw as bugging her because I didn't want to be too needy of a patient and take advantage of how amazing she is. How much sense does that make? None. I had no idea so many of my problems were connected, so I only talked to her about the female issues.  

• I didn't have a primary care doctor, didn't know who to trust after some truly horrible experiences with a doctor in Germany, and I assumed they would all brush me off or treat me like a hypochondriac. I was dismissed more than once. It took time for me to realize I had a right to answers. But once again, my OBGYN was pivotal in continuing to advocate for me and nudge me in the right directions. She never once gave up on me even when I wanted to give up on myself. 

• I didn't want to appear weak. I'm fiercely independent and loathed the idea of being labeled with anything. Why should that matter? In hindsight, I know it was silly because suffering in silence doesn't make it go away. 

• I'm a wife, mother, and business owner with an extremely demanding job. Like many, I tend to put the needs of others over my own. I spend my days making the lives of my clients easier, so neglecting my own needs happens easily. When my kids were younger, I was busy with them. Since I already had to juggle things I couldn't ignore health-wise, finding answers for what I personally deemed the "smaller things" seemed petty and unnecessary. 

• Being told I was over 40, so this was a normal progression. Because people dismiss concerns with age excuses, I'd tell myself the breath-taking pains shooting through my abdomen weren't that big of a deal if they passed. Waking up with my joints hurting or struggling to sleep was just part of life, right? Almost passing out when I was too hot during physical activity was just what happened. Right...? *crickets*

I could continue listing reasons why I didn't advocate for myself for so long, but the points all come back to the same thing: 

If I do not advocate for myself, no one else will. 

When I was collecting information for doctors and creating timelines and a list of symptoms, I had an image in my head of a connect the dots picture. But instead of numbers you can follow and trace the path to the final picture, it's a bunch of random dots on a page. You aren't sure where to start and what dots connect to form the right picture. I feel like I have the shape now, but the details are still hazy. Sometimes I have to backtrack and try again, but eventually I hope to fill in the rest and have and create a clear-ish picture

But it's not all bad.

Knowledge is the key to understanding. Having answers provides me with a sense of peace simply because I no longer need to question or doubt myself when something feels off. It's real. 

It's important to share the great experiences along the way so the negative doesn't have a spotlight for long. As I mentioned, my OBGYN was pivotal in connecting me. It took us multiple tries to find a new primary care doctor who would take the time to work with me. Ehlers-Danlos Syndrome is a rare disorder and difficult to get a diagnosis.  Ultimately, she introduced me to a program called MDVIP because I needed a PCM that would take time to sit and talk to me and help me manage what's to come. Ehlers-Danlos Syndrome does not have a cure, and it is a progressive disorder. I need help managing things in the future.

My yoga instructors deserve huge credit for leading me on the path to my diagnosis. That's right, yoga instructors! I've been flexible my entire life. Looking back, I received a few random comments from people about the way I'd stand, but I never gave it a second thought. When I returned to yoga last year, it wasn't long before a couple of the instructors pointed out I needed to be careful because I was hypermobile and overextended my joints during practice. I was baffled at first because I just believed you were flexible or you weren't. It never occurred to me I was doing anything out of the ordinary. What they pointed out as stressing my joints was absolutely normal to me. I do not know how to stand without my knees flexing the opposite direction. Their comments made me recall something a couple of doctors mentioned to me years before about the ligaments holding my organs inside were extra long. I mentioned the hypermobility in passing during a doctor visit, and she did the Beighton screening where I scored 9/9. Without my yoga instructors cautioning me, I never would've mentioned it to a doctor who suggested Ehlers-Danlos Syndrome. It's ironic how a disease that centers around defective connective tissues in your body has so many connecting comorbid symptoms. I will always be thankful to the ladies at Bee Well Yoga for truly caring about my well-being and pointing out something I never knew was abnormal. 

With Covid and seeking answers about my health, I haven't had an opportunity to return to the yoga studio, which I miss greatly. Now that I fully understand why I can't participate in hot yoga classes, or why I have to keep exercise low impact, I hope to find some classes that will accommodate my Ehlers-Danlos diagnosis. Yoga not only helps me manages stress, which we all need, but my joints and ligaments FEEL better when I regularly attend.  

The geneticist told me my body is basically wearing out faster than an average individual, so I have to be cautious, make adjustments to my life, and pay attention to the signals my body gives me. After providing a list of "What Not To Do", he said it boils down to, "If it hurts, don't do it." For someone that pushes themselves a great deal, that is not an easy request. Slowing down isn't in my nature, so it will take time to retrain my "Just keep pushing" attitude. 

Finally, I found it humorous to learn the symbol for Ehlers-Danlos Syndrome awareness is the zebra. There's an expanded explanation HERE, but it boils down to the concept that medical students are taught to look for the usual and the common when diagnosing...not to expect a zebra when they hear hoofbeats. However, there really are times the diagnosis does involve something rare or unusual. So EDS awareness has a saying that goes, "Sometimes, when you hear hoofbeats, it really is a zebra."

So for those of you who associate me with unicorns, I'm having to make adjustments these days. Here's a great compromise since...

 Life is a little less unicorns, and a little more zebras now...

P.S. No one knows your body and the things you experience like you do. Advocate for yourself. If a doctor dismisses your concerns, that doesn't mean they aren't important. Keep asking. Keep pushing. Keep seeking answers. You owe yourself. 

P.P.S. Did you know a group of zebras is called a DAZZLE?!?!?! Um, yes please. 

P.P.S. I was feeling a little blah and decided to make some EDS Awareness swag, and I think it turned out not too terrible: EHLERS-DANLOS SWAG

I Promise I'm Working Right Meow

Prior to social distancing, many people thought working from home was glamorous and “easier” than office life. I've answered lots of messages from people asking how they can get a job like mine. Unfortunately, I have no magical answers, but I can show you why it's not all glamour and leisure. Why? Because I don't mind to make fun of myself.

Office vs work from home both have pros and cons, but in case you haven’t had the option to work remotely, it is really more like this:

1. I need to pee (because coffee) but I don’t want to disturb them and get the younger two riled. Quiet time is sacred. They may sleep up to 18 hrs a day, but the younger two wreak havoc the other 6 hrs.

2. I’m wearing the same pajamas I have for two days. There’s a cat on my shirt—dressed like Harry Potter. I’m thankful for social distancing because I look pretty publicly unacceptable. 

3. 3 is for the number of days it's been since I washed my hair. Don't judge...the cats don't.

4. I’m sitting on my bed to work, but it isn’t the best because my back is killing me from the lack of yoga and general moving. I’m a hybrid human sloth. I cannot say human and cat hybrid because these heifers sleep 18 hrs a day, and I have to work. When I attempt yoga of any sort, things like this happen...

5. I have zero sense of work time vs non work time—it’s basically always work time. Without my youngest child’s school schedule, I’ve lost all balance. It's time to stop when my eyes can no longer stare blearily through the lenses of my glasses. That leads us to number 6.

6. My coworkers are adorable, but I found teeth marks on my glasses today. Brats. Look at him sleeping innocently. The problem is, I have no idea which of the younger two did it. It's a good thing I have more, but that would require waking them up to go find them. We already addressed why that's not a great idea.

7. I’m constantly distracted by the inherent need to DO things around the house. Laundry because I need to change pajamas. Vacuuming and sweeping because cat hair accumulates. My parents judged the cat hair situation correctly when they gave me the stellar mug Leo decided to pose with. 

8. Like any true crazy cat lady, there are far too many times when I'm distracted by the need to take more pictures of my cats because they do something funny or cute...well, at least to me.  I just drag the rest of you along on the journey.

9. Nothing is sacred. My husband is currently working remotely, so he confiscated my desk. Incidentally, this leads back to more of number 3. If I manage to extract myself from my furry fiends (yes, that's fiends NOT friends...) to make it to the bathroom, I will return to find my computer confiscated. They love to steal my computer, but they rarely produce anything work-related while they have it.

10. If you go too long without posting pictures of your cats on social media, people assume something is terribly wrong and message you to be certain you haven't fallen ill...or haven't finally been overthrown by the cats.

This may leave you wondering...who's really behind the keyboard today? The world may never know...

Photo ops by: Sir Sebastian Poof Poof Wiggle Cricket, Leo Boone McCuddle Bug, and Grayson Jack McBallsy Pants

Saying Goodbye To Our Precious Conversations

Alma Marie Davis

May 8, 1938 - January 5, 2020

In January 2016, I wrote the first blog about my grandmother entitled Precious Conversations. In it, I said, "I feel the clock ticking resolutely forward.  It's a cruel, grating tick."

The clock stopped January 8, 2020 at 10:25 a.m.

She passed away peacefully but unexpectedly. While we knew she wouldn't be with us by next Christmas, we weren't expecting it to be so soon. Sometimes death sneaks in quietly. 

When I wrote the first blog post four years ago, I explained, "...logic is my coping mechanism, and I've been thinking a lot about my perspective on what lies ahead.  So many diseases exist that could leave her suffering physically, in pain and fading away.  She could have to endure chemo and radiation for months/years. Maybe Alzheimer's is a way the rest of us can bear the burden for her.  She won't be aware, or so we hope, as her memory slips further. I hope we can carry the weight of sadness for her..." I pray that was the case for her. It's worth every ounce of sadness and grief if it means she didn't experience it herself.

The obituary was written, the service planned, and we met with the pastor who would conduct the service. He asked a question that broke through the numb feeling I'd surrounded my heart with since the moment my dad called to give me the news: Would anyone like to speak at the funeral about her? I didn't say anything, but my heart stuttered in my chest as I kept my lips firmly shut. By the time I made it back to the hotel, I felt absolutely sure I should say something, but I was terrified. Despite my pounding heart I spent time that evening writing the words I wasn't quite sure I could stand in front of others and say without completely losing my composure. In case you don't know, I'm a terrible introvert. And the idea of speaking in front of anyone made me want to crawl into the nearest hole and stay there. That very reason was why I did it. Because I felt like doing something very hard for her was the sort of thing she deserved. Rereading my 2016 post, I came across this line:

I can't change what's to come, so I can only change my perspective.

So that's exactly what I did—I changed my perspective. I decided I needed to do it, that I SHOULD do it. It wasn't perfect, it wasn't all that I wanted to say...but it was only about saying goodbye in the best way I knew how.

My mother later asked me for a copy of what I said. So, mom...this is for you:
I’m Jamie Elizabeth Davis. I am the oldest child of my grandmother’s oldest child, Terrie. It’s been my privilege to have my grandmother in my life for 42 years. As the oldest grandchild, I was the first, and she always told me I was also the first to call her Memaw…because I couldn’t say Mamaw or Grandma.

My middle name, Elizabeth, is after her mother who I was fortunate enough to have in my life until I was 13. I’ve always been thankful my parents gave me that middle name. Ironically, despite being born a Kenoyer, my last name has been Davis for almost 24 years. My husband, Wes, comes from a family of Davises. I always loved the fact I had the same last name as my maternal grandparents. But don’t worry, the family tree forks…

My children are obviously both Davises. And Papaw, the best part of it is my son, Caleb, will also carry on the Davis name and represent both sides of his family.

As a grandchild, I was fortunate to have the very best parts of my Memaw. She wasn’t responsible for raising and disciplining me because she had already raised her children. It was a lucky spot to have. So, thank you for going first, Mom, Julia, Sandy, and Chris—for paving the way. 

My Memaw and I shared a love of the colors yellow and purple. And she loved to tell me how I couldn’t say yellow when I was little, and it would come out “yeddow”. She told me that story so many times. 

There was a couple of years where both worked at Eastland Mall. I would look for her on my breaks or take Wes over there when we were dating to look for her. I absolutely loved the beautiful smile on her face when she’d see us walk into the store. She had such a beautiful smile. It was the sort you knew reached all the way to her soul.

My Memaw was consistent. No matter how chaotic my life was, I always knew she would be the same when I saw or spoke to her. That has always been such a source of security for me.

She was full of grace and had a rod of quiet strength. But I always knew she could be fierce if she needed to be. I never believed she was perfect, but I always believed she was sincere and had the best of intentions. 

I watched her as I grew up, and my grandmother had a way of loving and accepting people who came into her home without judgement. No matter who came to the house, which of us brought someone new, they were welcomed without question and treated well. I watched her care for people without expecting anything in return.

Memaw would wait at the door or standing in the open garage as you pulled away. She did that until she was no longer physically able to...Papaw, you were there as well. When I think about her, I often picture her standing there, waving, blowing me a kiss. Mom, when you stood at the door waiting as I backed out of their driveway last night, you reminded me of her.  

I called over the years, even at the nursing home, and tried to catch her awake though there came a time I greatly doubted she remembered me so I could tell her I loved her repeatedly just to hear her say it back to me. I treasured each one. 

Papaw, thank you for always being patient and chatting with me during those calls even when she wasn’t awake to talk to me. 

The relationship I had with my Memaw began when I was a baby, through my childhood into adulthood, and continued until I had to carry it for both of us. But it lasted because her love was unconditional…and because I pursued it. I didn’t wait for her to call first. I called her because I wanted to hear her voice, and I knew she thought of me even during the times we didn’t speak for awhile. 

I sat in the floor next to her chair Christmas day and held her hand. One of the last things I heard my Memaw say to me was that she loved me. I told her I loved her about a dozen times that day, and she repeated it back to me in her quiet voice. 

Part of growing up is learning to say goodbye to the people we love as the cycle of life continues. But I was so fortunate to live at least half my life hearing my Memaw’s voice, talking to her, making memories, and hearing her tell me she loves me.

I know I will see her again one day. Her love for Jesus was evident in the person she was…and IS STILL, and one day I will hear her tell me she loves me again…and this time, I bet she will say it first. 

I almost didn't make it through the last two lines. I prayed many times before that moment that God would let me get through it so I could give her the tribute she deserved. I held tight to the faith He would as I choked back the grief lodged in my throat and finished.

I wrote a second blog post in October 2018 called More Precious Conversations. I wanted to forever remember a conversation we had on the last evening I spent with her in her house:

"She stroked my hair when I laid my head in her lap. She told me she loved me, and at one point she said, 'I love you, Jamie Elizabeth.' I will never forget that.  I've recalled it a thousand times already. Before I left that evening, after my aunt and grandfather had her tucked away safely in the hospital bed, she told me she loved me again. She looked so small, and as I walked away, I wanted to run back, hug her, and not let go."

Someone gave me food for thought while I was in Indiana. She said it's better to ask people how they are in that moment during something like this. It stuck with me, and I've used it repeatedly since then. In this moment, I am heartbroken. In this moment, grief bubbles up in random moments and burns my eyes with unshed tears. Some moments I can't keep them from spilling over. Some moments I look at her pictures and want to sob because I can't call her. I know a time will come when remembering brings more smiles than tears. I'll look forward to those moments. Until then, I'll just keep living in these moments. Because I'm not sad for her, I'm sad for me...my family who are all hurting. Because...

I'll gladly endure the sadness of it means she doesn't have to...