Chronic Illness, Chronic Pain, Chronic Pancreatitis, Uncategorized

The Cost of Being Chronically Ill

When I first sat down to create a GoFundMe campaign to help me pay down the significant debt I’ve accrued over the past 13 years of being chronically ill , I didn’t know where to start. I thought about all the people I’ve met along this crazy health journey of mine – the ones who have been walking alongside me from the very beginning, the ones who have joined along the way, and the ones who are joining me now. How do I begin to thank everyone? How can I possibly ask for more than that?

Pride can be an arbitrary companion. It makes it difficult to ask for what we need. In my case, I’ve never been good at asking for help, especially financial help, but I find myself at a point in my journey where I need help to offset the financial burden that’s steadily accrued after more than a decade of being sick.

The Backstory…

My life was interrupted in late fall of 2005 by physical symptoms that dramatically affected my day-to-day life. I couldn’t continue to tell myself it was just stress or that I was “run down.” I suffered with increasing frequency such intense flares of stomach pain, nausea, vomiting, bloating, and bowel problems that it often reduced me to a woman lying in a ball on the floor of a public bathroom for hours at a time because my symptoms were so severe I couldn’t do anything else. Dignity and concern for germs were casualties to the cause.

It hurt to eat. A lot. The pain in the upper right side of my abdomen radiated through to my back like a hot poker, sometimes wrapping around my lower back like a vise tightening to the point I thought I’d surely break in half. It was a deep, boring, blowtorch kind of pain. I’d take a couple of bites of food and be too full to eat anything more. I lost 20% of my body weight in three months, and went down four dress sizes in rapid succession. The bathroom scale hovered at 100 pounds. At 5’5″, I’m small-boned, but I didn’t look “fashionably” thin. I looked gaunt and hollow. I looked like I was disappearing.

It was then that I began my quest in earnest to discover what was happening inside my body. It took two years of searching before I had an answer, and life as I knew it was forever eclipsed by four words: “You have chronic pancreatitis.”

For the next six years I was in and out of the hospital, on higher and higher doses of narcotics to try to mute some of the pain, and went through more than a dozen surgeries and procedures without much success. A week before my 53rd birthday I went through a complex 10-hour surgery that included removal of my pancreas, gallbladder, spleen, duodenum, and part of my stomach, and major reconstruction of my GI tract as a last ditch effort to reduce my pain. They also harvested the islet cells from my pancreas and transplanted them into my liver in hopes that without a pancreas I wouldn’t become a brittle diabetic.

After a full year of recovery, I slowly began to regain my quality of life, although I knew that the life I had before I became ill was never coming back. I lost so much over the seven years I’d been dealing with chronic pancreatitis – my marriage, quite a few friends, time with my grandkids, my career, my sense of adventure and love of travel, my “me-ness”. My world had become infinitely small, but I was finally able to pick up the scattered pieces and forge a new, albeit different, life – what I call my “new normal.”

Where I am now…

As a result of chronic pancreatitis and multiple abdominal surgeries, I developed gastroparesis (think stomach muscles that are paralyzed and can’t push food through for digestion); type 3c diabetes, which requires a constant supply of insulin through a pump to keep me alive; both GERD and bile reflux disease; small bowel bacterial overgrowth; difficulty absorbing vitamins and minerals (which really does a number on my teeth), and nerve pain. I also deal regularly with partial bowel obstructions due to the adhesions that have formed from all the surgeries I’ve had.

My team of doctors (and I do mean “team”) have done all they can to help me through the abdominal surgeries, the removal of most of my digestive system, port placements, blood clots, infections, obstructions, severe blood sugar fluctuations, and more.

As grateful as I am to the doctors, surgeons, and specialists who’ve given me back part of my life, there is still so much I have to contend with on a daily basis. I’ve given up looking for the big miracles – a cure, a reversal – and have settled on appreciation for the little miracles – a better way to manage my constantly erratic blood sugar; a possible treatment to ease my digestive symptoms and pain; a few hours where I’m not so nauseous that all I can do is lay in a fetal position until it eases; a night where I don’t wake up choking on my own bile.

One of the hardest things about the past 13 years battling pancreas disease – harder than the gut wrenching pain, the nausea, and the inability to eat without setting off a chain reaction of symptoms – is the loneliness. Even surrounded by family and friends who love me, and who have been there for me over and over again, I often feel alone.

Chronic illness does that to you because so much of what goes on when you’re sick happens internally. And I’ve gotten very good at keeping a lot of that hidden. I don’t want the world to see me only as this “sick” woman. As a burden. I don’t want people to give up on me, and so I put on a face to the world that is often far from the woman I feel.

The Costs…

Which brings me back to that arbitrary pride I mentioned at the beginning of my story. The truth is, living with chronic illness and managing multiple diseases is costly – physically, emotionally and financially. I’m fortunate to have health insurance that offsets some of my ongoing costs, but it’s nowhere near enough to pay for every medication, every test, every procedure, every surgery.  And because managing my health is a full time job, I rely on my savings, my rather meager disability check, and the money I am able to make working part time to pay all my bills, not just my medical ones.

In the coming weeks I will be having another surgery – this time to implant a gastric stimulator in my abdomen that works much like a pacemaker works for the heart. It will send constant signals to leads attached to muscles in my stomach that are needed to push food through to the intestine. It’s not a cure. There is no cure for gastroparesis, but the hope is this will reduce the degree and frequency of my nausea and vomiting and make digestion somewhat easier.

There will be additional surgeries in the future to repair some of my reconstructed GI tract as well as reduce the amount of abdominal adhesions I have that contribute to my chronic pain and regular bowel obstructions. I will also need surgery every 3-5 years to replace the gastric stimulator when the battery dies. I have no doubt that other issues will come up over the next few years that will make other surgeries necessary as well. All of these surgeries will cost hundreds of thousands of dollars, and my share will run in the thousands.

Two of the medications I take in order to literally stay alive are also my most expensive, and my co-pay for just one of the meds is almost $600 a month. I’ve found myself parsing out the pills in order to make the prescription last longer, but that only exacerbates my symptoms, and in the long run isn’t sustainable.

My out-of-pocket prescription costs alone are over $1000 a month, and that doesn’t include what I have to pay to regularly see my GI doctor, my endocrinologist, my primary care physician, or my surgeon. It doesn’t include my co-pays for regular MRIs, CT scans, gastric emptying studies, blood work, and more. It doesn’t include gas and hotel stays since most of my doctors are hours away at teaching hospitals. It doesn’t include the $10,000 I’ve paid over the last year alone to repair my teeth because I don’t have dental insurance. It doesn’t include food or housing costs or ever-increasing health insurance premiums.

How you can help…

While I haven’t had the easiest path these past 13 years, I have been on the receiving end of so many blessings. No matter what obstacles I encounter along the way, no matter how lonely I sometimes feel, no matter how tired I get of fighting, I never lose sight of these blessings. I never lose hope.

My partner Don, his family, my family, my five grandkids, my close friends, my colleagues, those I’ve gotten to know through social media and support groups are, without a doubt, my greatest blessings.  They are a constant source of love, compassion, strength and laughter. They’ve never given up on me, never disappointed me, and have stepped up to every challenge presented to us. I say “us” because being chronically ill doesn’t just affect me – it affects everyone in my world. I wouldn’t be here to write this story if it weren’t for them. For you.

As difficult as it’s been for me to make the decision to set up a GoFundMe campaign that requires me to ask for help paying off some of my medical bills, I know it’s necessary if I’m going to keep from financially going under.

If you feel called to make a donation, please know I am grateful for your support. If you aren’t able to donate, but can share this campaign with your social media contacts, please know I am grateful for your help in spreading the word. For anything, for everything you do, I am truly, deeply grateful.

From my heart to yours, thank you. Evelyn

On hope and resilience: “They tried to bury us. They didn’t know we were seeds.” – Mexican proverb

Help Evelyn with her medical expenses.

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