AUTOIMMUNE

a familiar tune

(part one)

the NITTY:

In early July, the Poss Family attended the Friends For Life Convention, hosted by the Children with Diabetes organization. During a tiny portion of our amazing week, we were screened for Type 1 Diabetes. Natalie cackled as we nervously squirmed at the sight of those sharp needles and empty vials. We giggled with her and admitted that a 10-minute, routine blood draw was minuscule compared to what she deals with every day of her life. Yes, we are (as Grandpa would call us) wimps. Yes, it took bribery and ice cream to get everyone on board with the testing. But we did it! We earned those bribes and were later able to laugh at ourselves while enjoying Mickey Ice Cream Bars!

We aren’t laughing anymore.

I (Holly) tested positive for 2 Autoantibodies (GAD65 and ZnT8), indicating that I have the markers for Type 1 Diabetes and will, at some point soon, need daily insulin injections to survive.

THE GRITTY:

I pretended to be getting screened as a formality because Kane needed the emotional support. He was incredibly nervous about having his blood drawn, but even more anxious about the possibility of finding out that he, too, would have T1D. I did not give him a choice in the matter because one of my biggest fears is that Gwen and Kane will end up having this terrible disease as well. Watching one daughter go through so much breaks my heart already. I sat next to my sweet boy, and we had our blood drawn together. I was able to hold back all flinching, hide my nausea, and plaster on a fake mom-smile. My acting skills were on point that day. And many, many days before that.

Vulnerable backstory: In the last year, and specifically in the last 6 months or so, I have been experiencing a host of frustrating and sometimes debilitating symptoms. Friends, doctors, and late-night Google searches convinced me that each issue could be explained by my now extreme geriatric status. My eyesight, light sensitivity, and hearing have worsened because organs typically fall apart after 40. No big deal. My sudden weight gain, night sweats, and exhaustion were due to my changing hormones. Yay womanhood. Hair loss and headaches were the result of dehydration and anemia. Duh. Low energy, brain fog, and focus issues could be blamed on my anxiety and lingering depression. My blood sugar was sometimes dropping low because I didn’t eat at regular intervals. My bones ached because I was dancing too hard without properly stretching, never mind that the pain didn’t coincide with the dance schedule or the muscles I used. Whatever. I’m not a doctor.

I invested in bifocals, drank gallons of coffee, popped extra vitamins, and hesitantly accepted my fate. I called myself lazy, because that’s more widely accepted than how I really feel, which is crazy. I laughed every time I forgot what I was saying mid-sentence and cried about it in the shower later. I turned the radio and TV volume up while my kids rolled their eyes. I gave Natalie the satisfaction of pricking my finger to check my glucose levels and let her shove sugar down my throat when needed. I apologized to everyone when I didn’t have the strength to follow through with whatever plans were set. And I complained to Bill. A lot.

I expected my body to fall apart in the second half of my life. I just didn’t expect it all to happen so fast. So no, I did not think that I had Type 1 Diabetes. But I did know, in the back of my mind, that something was wrong.

We were told by the screening company,Trialnet, that the test would take a couple of weeks to process. “No call” was a good sign. Results would be emailed. They only ever called families with bad news. Fast forward to July 23rd, when Bill was out of town (when isn’t he?) and I was being a busy mom. FYI, I NEVER answer my phone. It’s against my religion. But when I saw that the call was coming from Gainesville, I panicked and answered with my achy fingers suddenly-crossed. Please, please, please don’t tell me the kids tested positive. They didn’t. Lisa, an absolute gem of a researcher at UF, explained to me that my test results were positive. I needed to come in for further testing to see what stage of T1D I am dealing with. She would take care of everything. She did. She has. She will continue to do so.

Natalie was away at Diabetes Camp at the time. Doctors, nurses, and counselors were in charge of her devices/responsible for her care, and she couldn’t call or text home. Ironically, the one week of the year I was supposed to get a guaranteed uninterrupted slumber every day, where I wouldn’t have to worry about diabetes, I slept not a wink. I’ll admit that while Kane basked in his Natalie-free week, I missed my girl fiercely. It was difficult and strange to have this new knowledge, this unchosen connection to her, this complete upheaval in our lives, and she didn’t even know it yet.

I’m cutting out some details here, as not to bore you, but basically… Bill was still out of town, Kane LOST HIS MIND when he found out I tested positive (don’t worry, he is seeing a counselor starting next week), Bill came home late Friday night (we may have said hello, I can’t be sure), he picked up Natalie from Diabetes camp Saturday morning, we met for a quick lunch, shocked her pants off with the news, she inserted my first dexcom right there in the restaurant, Bill and Natalie went to watch Kane perform in his Lion King show, Gwen and I got on a plane headed for Philly and the whole family spent the next 9 days split up, scattered about the country again. In Philadelphia and NYC (more on that trip later), I had 3-4 scary low blood sugar episodes, which only ramped up my nerves and made it harder to be so far away from home. I missed my bed, my people, my sanity. Gwen and I booked an early flight and made it home on Monday night, August 4th.

On Tuesday, we drove to the University of Florida in Gainesville (where the Diabetes Research Institute is located) so that I could check in early Wednesday morning for an oral glucose tolerance test. The staff tested my blood sugar at various intervals and determined that I am in Stage 2 of Type 1 Diabetes. This proof of dysglycemia, testing positive for two autoantibodies, and an increase in my A1C over the last few months, means that my pancreas is definitely dying. My body is now “on the clock” and being monitored closely so that Insulin can be started at the appropriate time.

the PRETTY:

The whole shituation is pretty awful, I’m not going to lie. In part two of this jumbled mess, I’ll go into more details that demonstrate the relationship between raining and pouring. But there are always beautiful moments, even in the darkest storms.

• Nurse Natalie has been taking care of me, just like I knew she would. She’s a pro. Being a T1D with years of experience and being 13 (therefore knowing everything) means she will teach me a thousand things a week, I’m sure. The mom-guilt I felt when she heard the news and blurted out, “so it’s YOUR fault” is pretty painful, I’m still so relieved that I’ve got her with me in this fight.
• During the the hardest moments these past few years, I have often said that I wish I could take this disease away from her. I wish it were me who had to deal with this, instead. INSTEAD. That’s the keyword that some sadistic genie overlooked when granting my wish! But if I can’t take the stress away from her, the least I can do is suffer by her side. I know she feels slight comfort in having this connection with someone. Having something in common with her mom may not have been her first choice. I mean, how embarrassing. But at least it will be a little less lonely.

• Free Stuff! Working with Trialnet at UF has been incredible. We got a private tour of the Diabetes Research Institute after my first test. The staff answered all of our questions, and we got to watch real scientists in action. We have been adopted into this family of highly qualified and experienced doctors and researchers. All the testing is free, the hotel stay was free, we were given food and were reimbursed for mileage. It has been an incredible support system. One I didn’t know I needed, but now am glad to have.

• Proof of progress. There are still tears. There are still fears. But this isn’t our first rodeo. We’ve been shown many times over the years that as soon as we think we have life halfway figured out, the world laughs and flips upside down again. Not only does it help to know that this is a pattern…To have the knowledge that tragic and scary and monumental things happen when we least expect them. But it helps even more to have the wisdom gained from being forced to plot these bumpy graphs. Because our family knows that lows turn into highs. The sun comes up again, even when the night seems to last forever. And no matter how difficult things can get, we are strong enough to survive. It’s just a bit more expensive and tedious.