October 20, 2017

My Life with Chronic Illness (Wegener’s Granulomatosis)

Life with chronic illness is an adventure. Not a fun one, but a long and challenging one that is constantly changing and evolving. It’s filled with doctors, tests, medications, a bit of guessing, some experimentation, and a whole lot of prayer.

I should know — I’ve been living with chronic illness since 2007. I was diagnosed with Wegener’s Granulomatosis, also known as “Granulomatosis with Polyangiitis,” the year after graduating college. It’s a rare auto-immune disease that is mostly “invisible” to the outside world. Other than looking really tired (bags under my eyes and all that), most people wouldn’t guess that I struggle with life-changing effects on a daily basis.

It’s been a hard journey, but I have learned some amazing things along the way, and seen God working and displaying His character in ways I’d never have noticed otherwise. Here’s four of them that I recently wrote about:

But life isn’t purely a spiritual thing — it’s physical too. So I also wanted to share some facts about my diagnosis and a few unique aspects of day-to-day life with an (invisible) chronic illness.

My Life with Chronic Illness (Wegener's Granulomatosis)

  • The chronic illness I have is Wegener’s Granulomatosis. You can read more about it here. It is treatable, but not curable — and can recur at any time — so I will likely continue treatment for the rest of my life.
  • I first showed symptoms in August 2006, starting gradually with sinus and hearing trouble. My symptoms started progressing more rapidly about six months later.
  • I was actually diagnosed in April 2007, after a month of crazy bottom-falling-out-of-the-sky laundry list of symptoms, several trips to the ER, and (finally) admittance to the hospital at 2 AM on Easter Sunday. When I was admitted, they discovered I’d lost half my blood. It had disintegrated due to the inflammation of the blood vessels (vasculitis). I am not exaggerating when I say that I was pretty close to the end. And I am incredibly grateful to whomever donated the blood that they gave me! I was in the hospital for a week, being diagnosed and starting treatment of daily oral chemo and predisone. When I was discharged, my muscles had atrophied so much that I couldn’t walk without help. It took me several months just to go down a flight of stairs on my own!
  • The worst symptoms I experience daily are varying (unpredictable) levels of chronic fatigue, breathing problems due to residual scar tissue in my airway, and a very weakened immune system. I also suffer from chemo-induced ovarian failure, meaning I can (probably) never get pregnant.
  • The less-serious daily symptoms I experience include an eye that constantly waters, moderate hearing loss, tinnitus, constant sinus drainage, joint stiffness, weakened lung capacity, and an inability to scream (okay, maybe that’s not a daily problem).
  • Every day I take 19 vitamins, supplements, and medications. I also use essential oils to improve things like insomnia, congestion, brain fog, hormone imbalance, and susceptibility to viruses. Unfortunately, as far as I know, there are no alternative treatments to immuno-suppressants (ie, low-dose chemo) and prednisone for my type of vasculitis.
  • I can’t super-charge my immune system. Wegener’s is an auto-immune disease, which means that my immune system kicked into overdrive and started attacking itself. So while I can eat healthfully and exercise and avoid germs, I can’t let it get too strong. In fact, a simple cold could land me in the hospital, because it could force my immune system back into overdrive. So my apologies for avoiding you whenever you’re sick, or not visiting you in the hospital. I don’t want to end up there myself!
  • Mornings are the hardest part of my day. I take one pill when I wake up, and then wait an hour before eating. It’s really hard to do anything before getting the energy from those calories. Chronic insomnia also makes it difficult to get going in the mornings.
  • I collect doctors like some women collect shoes. Depending on how my health is going, I visit my rheumatologist every 1-3 months and have blood work done at each visit. I also regularly see an otolaryngologist, audiologist, pulmonologist, and opthamologist to keep tabs on my symptoms and underlying disease, along with the more “normal” doctors that most people visit. The worst part is meeting new doctors and trying to share the whole scope of my medical history with them, and having to drink twice as much water the day before (and day of) the blood tests. (But if you need tips for easier blood tests, let me know — I could write a book!)
  • I am unable to work a regular job outside the home, or commit to anything without making contingency plans for rain-dates or fill-ins. However, that isn’t as difficult as it may sound: my heart is in ministry, and ministry can be done no matter where you are, and whether you have a chronic illness or not.
  • I love when people remember me with a quick text or email, just to say they’re praying for me. I love getting handwritten notes in the mail. It lets me know people haven’t forgotten about me or my daily struggles! And I especially love when people ask specifically how things are going, and when they care enough to truly listen to my answer.
  • It’s hard when people don’t understand the difficulties that require me to spend so much time at home, unencumbered by normal levels of responsibility. In fact, my biggest adjustment has been needing to rest so frequently. No more over-active, hand-in-everything college grad, spontaneous trips to IHOP at midnight, or sleepover movie nights with friends. Although I try to stay busy and work hard when I’m able, I have to temper my commitments with the reality of my limitations, and be diligent to avoid over-stressing my already weakened body. So it’s frustrating to hear people comment on my life, wishing they could stay home all the time too. It’s hard when people think they understand  chronic illness even though they’ve never suffered anything worse than the flu.
  • It’s hard to remember this disease is a lifelong thing. That I may never know my old “normal” again. That I will always have to be careful about staying healthy and watching for flare-ups. Some days are good, and I can fill my time with work and socializing and activity — but I always end up paying for it afterwards. I choose to make that sacrifice at times, knowing the benefit of fellowshipping together or completing a job will outweigh the necessary rest period after. But during those good times, it sure is easy to “forget” how bad things can be!
  • My illness has taught me many things, but especially how to say no to “good” opportunities so that I can pace myself, how to ask for help, and how to value the little everyday things in life. I’ve also learned to shift my perspective to see opportunities, not limitations, and recognize that there are more important things in life then perfect health or fitness.
  • Scripture is a life-saver, especially when I’m struggling physically. Psalm 103:2 reminds me: “Bless the Lord, O my soul, and forget not ALL his benefits!” There is always something to be thankful for, and that is an instant mood-changer! And 2 Corinthians 12:9 is a deep well of comfort: “But he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.” None of us can live in our own strength, it’s just a little more obvious in my life. But His strength is always enough for my needs!
  • I’m thankful for so many things! Especially: learning how to slow down and live at a calmer pace; learning to treasure everyday moments with loved ones; having time at home to write, read God’s Word, and enjoy other hobbies; a husband who loves me sacrificially the way Christ loves the church; and friends who don’t give up on me.

We are a community, we fighters of serious illness. We can understand and pray for each other in a way others cannot. We can relate to each other’s joys and struggles, more so than anyone else can. A diagnosis of chronic illness does not signal the end of your life: it’s just a redirection of what God wants you to do. And you are not alone!

You are one of the reasons I wrote my book, Touching the Hem: a Biblical Response to Physical Affliction. If you’d like to learn more about it, visit the website or check it out on Amazon. There’s also a free study guide available on the website!

If you also struggle from a chronic illness and would benefit from the book, but have financial difficulties that preclude buying anything extra, would you let me know? I’d love to send you a digital version free of charge.

If you live with a chronic illness, would you take a moment to let me know? I’d love to get to meet you, and encourage you and help in any way possible. Send me a message through my contact page.

 

 

Comments

  1. Thanks for sharing the details. I am so blessed to be healthy, but I strive to be thoughtful and considerate with my words to people that don’t have that kind of health. (like the “I wish I could stay home…” ) Thanks for those reminders!

  2. Johanna, I was shocked by that stupid comment too. Elizabeth, I am so sorry people would say such a dumb thing. This has been a great series. And the info gives me great back ground for what laid the foundation of your book. You are an inspiration to me.=)

    • Sadly, that’s not the worst that people say – but thankfully I’ve been blessed by many gracious loving friends, who are usually very kind in their words. Thanks for your support and encouragement, Bernadette!

  3. I’ve also experienced a forced slowing down in my life, an almost sudden halt to all outside activity. I have also experienced some incomprehensibly insensitive words, which has made me more careful about the words I choose to communicate with others. Thanks for the encouragement to reflect on, and write about, my illness.

  4. When my illnesses started, I was told by a relative that since I was just sitting at home being lazy, that I should go back to school and make something of my life. At the time it really upset me. Now, I just laugh at the ignorance that some people have and am thankful that I now know how to relate to others who battle illness.

    I feel that living with a chronic illness is a full time job. Each day is a physical struggle and I work hard to make it through each day with a joyful spirit and a thankful heart.

    Praying for you today!

  5. Thanks for sharing your story with us! I think you’re right and that it can be inspiring for others who are going through illness or big struggles to know that they are not alone.

    I’ve lived my whole life with Muscular Dystrophy and have never been able to walk. My lungs are very weak and so I can relate to having to be careful to not catch any kind of germs, colds, etc.

    I admire your faith and how you have made the decision to focus on the positive things you have going for you in life. I understand that your disease, just as mine, has no cure but I believe the real “cure” lies in how we choose to think and behave each and every day on this earth. I believe the thoughts, attitudes, faiths and beliefs that we know will lead us to the happiness we want in life are exactly what we need to put our total focus on.

    I can tell that you are a strong person and that you will continue to overcome obstacles and by doing so you will also inspire many others.

    Best Wishes,
    -Kevin Barton-

  6. I enjoyed reading this! Really great insight into your life and the struggles you face on a daily basis. I prayed for you this morning. Hope you’re having a good weekend!

  7. My motto: I will NOT let me disease define me!! The Lord will give me the strength to get through it!!

  8. Elizabeth, I am so thankful you shared all of this. I admire your openness and vulnerability, and I am inspired to know that even through the struggle of chronic illness, you are such a light to others and a huge encouragment as you minister to the blogging community! God is always so faithful to use suffering for His glory, as I know you can testify to. Keep running the race, friend, and I look forward to cheering you on as you go!

  9. Hi Elizabeth, thank you so much for sharing! I just found your blog today and have truly been encouraged. Thank you for sharing the details of what you endure. I’m sorry for the disease you face each day, but I know thriough Christ He gives you strength to live one day…one moment at a time. I don’t know how people live without Jesus. I too battle an autoimmune illness, Lupus. So I truly “get it” after fighting this for 15 years. As Catherine put it so well, it is a full-time job just taking care of ourselves not to mention our families. I am homebund 95% of the time, mostly in bed, and cannot get out in the sun bc it inflames my organs. Since I can rarely get out, my online friends are a wonderful support group. One way I cope is by setting my mind on things above and not on earthly things. (Col. 3:2). Heaven is our home and isn’t it a joy to think on the place where Jesus where wipe every tear from our eyes and make us whole! I love 2cor.12:9 as well, and frequently have to remind myself that The Lord and His grace will see me through, until He calls me home. God led me to write a book 2yrs. ago to bring hope to the sick. This was all HIS idea and hesitate to even say my book! The title is, “What I Learned Lying Down” on Amazon. I rarely comment on a blog but felt led to today. May The Lord bless your ministry abundantly! Praying Numbers 6:24-26 over you today. Sorry for the lengthy post…Blessings to you, Angela Dugi

    • Angela, I love those verses you shared. They are certainly an encouragement! Also… I am actually in the process of trying to get a book published, something that is the outcome of my illness! Will definitely be checking yours out on Amazon! Thanks so much for sharing!

Trackbacks

  1. […] When I was diagnosed with an incurable disease back in 2007, my world was turned upside down and my own plans for life were completely obliterated. Suddenly I was no longer the active college grad, involved in church ministry and full-time work and social life.  I could no longer work outside the home. I spent my days resting, regaining strength, and trying to find a new normal. […]

  2. […] blog, DogFur and Dandelions. Chronic illness is not foreign ground to her. She was diagnosed with Wegner’s Granulomatosis in 2007, and has to spend most of her time at home because of it. Even yet, she maintains a […]