Saturday, September 12, 2009

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Diabetes Type 1 (and two others)

2. I was diagnosed with it in the year: Fall, 1982

3. But I had symptoms since: Summer, 1982

4. The biggest adjustment I’ve had to make is: A total life regime adjustment, daily injection, every 2 hours checking of blood sugar, daily exercise, and best aid of all: viewing food as fuel and consuming the most nutrient dense food possible.

5. Most people assume: I am fit and healthy and life is easy for me.

6. The hardest part about mornings are: Waking and still feeling great fatigue. INJECTIONS.

7. My favorite medical TV show is: I do enjoy Grey's because I "get" it, thanks to my RN degree.

8. A gadget I couldn’t live without is: My glucose monitor; goes with me everywhere and some type of food to raise my blood sugar if needed. If you see me carrying a tiny bag (that woudl be my meter), or a big back pack or purse, it's because I've got lots of stuff to pack with me EVERYWHERE!, much like a baby.

9. The hardest part about nights are: After so many years of Diabetes the body oftentimes stops signaling the nervous system to tell a person when their blood sugar has dropped to a dangerous level. Unlike the famous scene in the movie, "Steel Magnolias" where Julia Roberts has the hypoglycemic reaction symptoms of shaking and sweating, I have no inkling that my blood sugar has dropped. I wake every 2 hours most nights to check my blood sugar. Not a good thing.

10. Each day I take Insulin injections & vitamins. Insulin, no life without it. I take a daily morning injection and injections with food or elevated blood sugar; a walking pin cushion. Well, I do take extra supplements to try to strengthen my immune system, worn down by the daily wear and tear of the Diabetes. I take chromium, cinnamon, vit D, C, Vanadyl. cod liver oil, and eat lots of fruits, veggies, and fish, especially Salmon, full of Omega 3's.

11. Regarding alternative treatments: I think massage and cardio exercise are two of the most under-rated therapies for assisting the immune system and cleansing the body of unwanted toxins. But, by far, the best "alternative treatment" for me is that which lowers my stress response, i.e. exercise-weight training, any creative activity such as pottery, decorating, and of course, writing. Listening to music and dancing alone in the house provide huge boosts of healing energy as well.

12. If I had to choose between an invisible illness or visible I would choose: Neither! Who deserves to be ill? Life is for living, loving, and laughing. Illness, invisible or not, strikes one down in too many ways. Illness is truly an unnatural state.

13. Regarding working and career: I have not been able to work outside the home for many years. Sadly, when I was working I was often severely penalized by employers for the "bad" days when I couldn't come in to work because I was too sick, blood sugars were elevated, caught the latest virus, etc. Employers ignorant and un-accepting of one's illness can create tremendous pressure on the chronically ill. Did I choose this? Would I choose this? Trust me, even on your worst days at work, you don't ever want to NOT be ABLE to have a job--it robs you of your identity, self-esteem, validation, social interaction, and yes, income. Lack of income makes one worthless in most relationships, fortunately not mine. And what to say when you get the ever so useless and superficial question at social gatherings, "what do you do?" answer "...uh, trying to survive here."

14. People would be surprised to know: Most people see my physical fitness and assume I have not a care in the world about my health. Come spend 24 hours with me anytime.

15. The hardest thing to accept about my new reality has been: Well, my reality changes every year. Every year Diabetes is more and more difficult for me to manage for various reasons.

16. Something I never thought I could do with my illness that I did was: I have never been one to think I couldn't do anything, until lately. Lately, for the first time in 20 odd years of having Diabetes, I am SICK OF IT! I question often whether I can take one more day, deal with one more secondary illness, or have one more sleepless night. I feel suffering and fear more of it.

17. The commercials about my illness: Commercials: lame, set up for pharmaceutical companies monetary gain. Most doctors: lame. What I knew the first day I was diagnosed has not changed. I am the master of my illness. I am the doctor, nurse, and educator of my diabetes. No one knows my illness or how to treat it better than I do.

18. Something I really miss doing since I was diagnosed is: Yes, you guessed it. Sleeping. Well, I have never missed chowing like others do. I was blessed with the want for healthy food and small portions. I'm tiny and I can't eat much anyway. But, I do really love pie and resent that I can't have as much as I'd like. I also, don't really enjoy being in the room when people are enjoying loads of food, especially PIE.

19. It was really hard to have to give up: Becoming a doctor. I thought the hours would probably take a great toll on me in the years to come. I was probably correct.

20. A new hobby I have taken up since my diagnosis is: I found working with clay, something I'd never had the advantage of experiencing as a child, to be the greatest gift to my overall well-being. Having my hands in the clay calms every cell of my being; requires much less insulin and brings a smile to my soul. Try it, if you haven't.

21. If I could have one day of feeling normal again I would: Go to work and eat pie! Seriously, it would be nice to leave the house for once without doing the dance of "do I have the: insulin, glucose meter, water, food, or sugar."

22. My illness has taught me: Healthy people haven't a clue how blessed they are; ignorance is bliss. Healthy people haven't a clue about my struggles to manage and survive my illness every single minute. I am never free of thinking questions such as, "what's my blood sugar", "can I eat this or what will I eat at this restaurant", and the worst one is the constant assessment I must do every minute to ensure I don't hit the floor due to hypoglycemia--blind to it most of the time.

23. Want to know a secret? One thing people say that gets under my skin is: "Should you be eating that?" ha...I should say that right back to them. I know I eat really healthfully and most people don't. I can't afford not to.

24. But I love it when people: Treat me like I am intelligent, with dignity. I like it when people offer me the same food as everyone else and let me bow out if I choose. I like it when people say, "do you need to check your blood sugar" because maybe I do, maybe I'm acting funny or choosing the wrong words and don't have the where-with-all to realize it. I also like it when people offer to help me when I need juice or sugar! without freaking out, especially lately since my blood sugar usually has dropped pretty low before I notice it. I also appreciate it when people don't wig out because I'm injecting insulin.

25. My favorite motto, scripture, quote that gets me through tough times is: Two, of many, I'll share: "Keep Hope Alive" by Martin Luther King Jr. and "If you are going through hell, Keep going!" by Winston Churchill. Never give up on yourself. Believe.

26. When someone is diagnosed I’d like to tell them: You are in charge of how this turns out in the end. Learn about your illness. Exercise and stress reduction are insulin's best allies.

27. Something that has surprised me about living with an illness is: Every day is different and you cannot be prepared for the bad...when it comes you must be flexible and say, "yes, this is a bad day, but it too shall pass, and tomorrow will be better." I know this has been, and is, the hardest thing for my friends to accept; most of them think I'm just bailing on them. Honestly, the good days are fewer than they were and when I wake to one of those, I jump! What a gift a healthy day is. Additionally, insulin injections are not always so painful! great new tiny needles.

28. The nicest thing someone did for me when I wasn’t feeling well was: Listen with compassion. I find it cruel for someone healthy to say, "yea, I know it's frustrating" Ha! No, you don't. Someday you might.

29. I’m involved with Invisible Illness Week because: I'm pretty tired, just lately, of being treated like I give up easily, not a quality I possess. People who don't see my illness, often treat me like I'm weak when I'm having bad days. I am not weak and have a strong resolve, always seeking solutions. I understand, after 26 years of being ill, all too well, what it means to have assumptions of good health directed toward you. It's a difficult life, because people expect you to fit right in...not gonna happen.

30. The fact that you read this list makes me feel: Love, support, and hope for a movement towards better treatment for all of us suffering silently. I'd rather speak than hold my breath, in hopes of bridging the gap. Thank you.


  1. Victoria,

    Thanks for being an "open book." You taught me something today about a disease I knew nothing about as well as taking a moment to be grateful for my healthy (albeit sore) body! I am glad we have struck up a FB frienship.

    Sheri Clarke

  2. Wow, thanks for your refreshing honesty. I have only lived with my MS diagnosis for 1 1/2 years + 5 or so years undiagnosed....I am in awe of someone who has been dealing with this type of issue for most of their life! That is inspiring to me.

  3. Thank you for your honesty and your willingness to share and educate us all. You are a delight. Renee

  4. You are very inspiring. I lived with gestational diabetes with my second son and know how it was quite challenging for just those 9 months...nothing compared to what you have to endure. Thank you for sharing about something so personal.

    Lisa M.

  5. Dearest beautiful Victoria,

    My brother is a diabetic. He takes the shots several times a day. Unfortunately, he smokes like a chimney and weighs over 300 pounds. I'm not likely to have him around for much longer. I wish he took better care of himself. I wish I took better care of myself. Your honesty is another reason why I'm going to make an effort to one day shake your hand, listen to your words in person and share the beauty of nature and gift of silence with you. Someday. Keep writing and I'll do the same. Hugs and blessings, Connie

  6. It is painful to watch someone we love practicing destructive behaviors. Diabetes is a lot work and I really believe managing it must be first priority, otherwise you lose eventually. I'm sorry for you. I will write a bit about that next post and maybe he might be open to listen. Wishing you the best. Thank you for filling your comment box with compliments for me. You are the blessing Connie.
    Thank you all for commenting; it really means so much to me! Lisa, happy your baby didn't suffer any complications because of the GD. love ya cuz

  7. Victoria,

    Thank you for sharing yourself. Even though I already know about your Diabete's, it is a good reminder about the facts of your "invisible illness." Not only for you, but for all the others out there that we all may not know about. Thank you for the strength that you shared, even when you may not always feel it. I have been struggling with sleep most of the summer and understand how important a good night's rest is. How it can effect everything the next day. I wish for you a time when you can get a full night's sleep without endangering yourself. You are beautiful! And although you live daily with this illness, you are a perfect role model for all those that also live with Diabetes. Thanks again for sharing yourself.

    Christine Pence

  8. Thank you Christine, please share it with anyone you know who has Diabetes. I'm hoping to stimulate more conversations among people with invisible illnesses. Seems, it's more difficult for them to talk about because there are so many assumptions that they are healthy, no open door for them.
    You're a sweetheart. Thanks so much for the comment; they help me keep placing one foot in front of the other.... Chamomile tea, 2 bags steeped for min 5 min, is a natural sleep inducer. I like mine with honey and ginger root.

  9. Hi Victoria - Your list is my list with a few differences - I've had Type 1 since 1986, was able to keep working at a sedentary job until 5 years ago because I had a really great boss - then came the other stuff......I don't have the same isuues that you do, but the debilitating nature is similar - I now also have Multple Chemical Senitivities, Chronic Fatigue, Fibromyalgia, cognitive problems from 3 and a half years of toxic mold exposure, scoliosos,.....that's as many as I can think of right now, I'm sure you get the point.......I was a vibrant, energetic, helpful, useful, person - now I rarely leave my home, and when I do I usually get sick in one form or another (I love getting lost in Bi-Mart, trying to find some juice before I pass out, you know? :-}). Thankfully I was able to get Disability a year ago after a 3 year battle - so at least we have some income - I'm not writing you this just to whine - just to let you know that ther'e somebody who has empathy for your struggles even though I may not know about all of them - I hope you are having a GOOD DAY! :-}

  10. Bill, that's right, whining doesn't help us anyway. I appreciate, more than I can express, that you shared this with me. I imagine you do as I and manage your energy expenditures carefully...never know how rough the rapids will be once I leave the house, brave of you to share that. I too have that same problem most days. I miss my "do 20 things at once" body! I wish you well! I was sharing some laughter with my husband via your website! Thank you for that. Thank you for this.

  11. Victoria, You are so beautiful inside. I am so thankful to have read your story. It reminds us all to take time to be compassionate towards others. You never know what another person is going through unless you take the time. My cousin has had polio since she was 2 years old (now 56). She had battled breast cancer 6 year ago, recovered, and now has been battling bone cancer. Although her prognosis is bleak, her faith and strength have touched so many lives. She has been my daily reminder not to take anything for granted. May you have better days than bad ones.