March 25, 2017

Just the Facts (WG Edition)

In honor of Invisible Illness Week, I’ve been sharing some things I’ve learned along my journey with Wegener’s Granulomatosis (WG). You can read them here: Recognize the body/spirit connectionSee opportunities, not limitationsRealize that good health is not everything; Cherish the time you have.

Today I thought I would share some facts about my story, and my day-to-day life with chronic invisible illness.

→ The disease I have is Wegener’s Granulomatosis. You can read more about it here and here. It is treatable, but not curable – and can recur at any time.

→ 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, and a very weakened immune system.

→ The little nuisance symptoms I have include an eye that constantly waters, moderate hearing loss, tinnitus, constant sinus drainage, joint stiffness, breathing problems due to 6 surgeries on my airway, 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 prefer herbal supplements, but they’re not always an option (ie, immunosuppresants and prednisone). As far as I know, there are no alternative treatments 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 just yet. 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 have monthly doctor’s visits and blood tests. The worst part is having to drink twice as much water the day before, and day of, the blood tests. {And if you need tips for easier blood tests, let me know. I could write a book.}

→ I am unable to work a regular job, or get out of the house very often. However, that isn’t as difficult as it may sound: my heart is in ministry, and ministry can be done no matter how sick or healthy you are.

→ My biggest adjustment has been learning to love being at home so much. No more over-active, hand-in-everything college grad. No more spontaneous trips to IHOP at midnight, or sleepover movie nights with friends.

→ I love when people text or email me, just to say they’re praying for me. I love getting handwritten notes in the mail, to let me know people haven’t forgotten about me. 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 say they wish they could stay at home all the time too. It’s hard when people think they understand completely, even though they’ve never suffered anything worse than the flu.

→ It’s hard to remember that 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.

→ My illness has taught me how to say no, how to pace myself, and how to appreciate the little everyday things in life.

→ My favorite verses when I’m struggling are:

Psalm 103:2 – “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!

2 Corinthians 12:9 – “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. And His strength is always enough for me.

→ I would tell anyone with chronic illness that a diagnosis is not the end of your life, it’s just a redirection of what God wants you to do. And you are not alone!

→ I’m thankful for learning how to slow down and live at a calmer pace. For learning to treasure the everyday moments with loved ones. For having time at home to write, read the Word, and enjoy other hobbies. For a husband who loves me the way Christ loves the church – and sacrifices his time and energy to protect and provide for me. For friends who didn’t give up on me, when I had nothing to offer them.

 

FOR YOU:

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.

So if you also struggle with a chronic illness, would you take a moment to let me know? I’d love to get to know you, to encourage you and help in any way possible. Send me a message through my contact page. I’d be privileged to get to know you!

 

 


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 […]