chronic illness

30 Things About My Invisible Illness You May Not Know 2013

I have done this meme before but with the way things can change and often how quickly things can change when living with chronic illness, it is likely that you could fill out these questions every year for Invisible Illness Awareness Week and answer the questions differently every time!

Invisible Illness Awareness Week 2013
1. The illness I live with is: endometriosis, abdominal adhesions, obstructions, fibromyalgia, peripheral neuropathy, migraines, IC, and Celiac disease

2. I was diagnosed with it in the year: my journey with these illness began on September 17, 2003 when I was initially diagnosed with endometriosis. I was diagnosed with fibromyalgia in 2006, Celiac disease in 2010, obstructions and adhesion issues in 2012, and peripheral neuropathy at the start of the summer.

3. But I had symptoms since: I began having symptoms throughout the year prior but things really came to a head and began impacting my daily life that summer. Thankfully I had (and still have) an amazing doctor who took me seriously, knew her business, and was able to get my diagnosed quickly. Considering a lot of ladies I know struggle for years before getting a diagnosis, I count myself very lucky.

4. The biggest adjustment I’ve had to make is: making the decision with my doctors to pull me out of work and to pursue disability. Huge life change.

5. Most people assume: that since I quit work, I must be “enjoying” my time off. I’m disabled, not on vacation. It is better being able to rest when I need to but its not like I’m spending my days eating bon-bons.

6. The hardest part about mornings are: getting moving! My joints are usually so stiff when I was up so the first little bit that I am up and moving can be quite painful at times.

7. My favorite medical TV show is: Mystery Diagnosis. I think I need to be on there!

8. A gadget I couldn’t live without is: my TENS unit. Wonderful little invention especially now that I’ve discovered a way to use it to help with migraines.

9. The hardest part about nights are: finding a position to get comfortable in and battling night sweats. Those are awful!

10. Each day I take __ pills & vitamins. (No comments, please) 12-15 depending on nausea and migraine issues

11. Regarding alternative treatments I: think as long as your regular doctors are on board and it won’t interfere with current treatments (as I know herbs and things of that sort can have an effect on the effectiveness of certain prescription medications), go for it! I have had some success with physical therapy and seeing a chiropractor. I have also tried herbs and things in the past but didn’t see any results. But if it is safe and you want to try it, give it a whirl.

12. If I had to choose between an invisible illness or visible I would choose: This is a tough one. I’ve gotten to the point now where my invisible illnesses are starting to come more visible when I need mobility aids (such as a wheelchair) to allow me to do extended outings with my family (such as Disney). For example, my last trip to Disney I used a wheelchair (and will likely do so on our upcoming trip) but I did not get a pass that would allow me to skip the lines. I didn’t feel it was necessary. I couldn’t walk the parks but I could stand in line (which is the main reason we go off-season for shorter lines). So when people would see me park my chair and walk to the line, I felt that I was judged for using the chair when they thought that I obviously didn’t need it since I could walk. The cast members as WDW are amazing and extremely helpful and never once did I feel judged or questioned by them. It was the other park guests that I felt gave me the side eye. Does that answer the question? I didn’t mean to write so much!

13. Regarding working and career: In April of this year, my doctor pulled me out of work indefinitely and we began the disability process. I am working on making my blog my career and trying to learn everything I need to learn to grow as a writer, build not only a readership but a true community, and create a network of support and encouragement with other chronic illness warriors and bloggers through projects such as the Secret Support Sisters. I want A New Kind of Normal to become a ministry.

14. People would be surprised to know: I ran track in high school and was the long distance girls team captain my senior year. I kept running all throughout college and most runs were often 5 miles until I started to get sick my senior year. I loved running so much that I have tried my hardest to find a way to incorporate it back into my life but at this stage I just can’t do it and that bothers me.

15. The hardest thing to accept about my new reality has been: Having to give up so many things that I love and always dreamed of. I hated to give up on my dream of being pregnant and carrying a child my husband and I created with love. I hated not being able to pursue a career in hospital chaplaincy that I was passionate about but could not pursue because my body could not tolerate the shifts and long hours on my feet.

16. Something I never thought I could do with my illness that I did was: I never had a clue that my illness would open so many doors and I would be able to meet so many amazing people! I have gained life long friends and I hate knowing that other people are out there struggling and hurting like I am, I am glad that we are able to find a way to connect so we can walk beside each other on this journey with illness and can support and encourage each other along the way.
17. The commercials about my illness: are always so inaccurate that it makes me want to scream. Why are the blood sugar levels always perfect on the test strip commercials? Why not throw a realistic high or low in there? Why is the person with fibromyalgia always out digging in the gardens? High five to those with fibro that still can do that but I know more that are like me that when fibro flares you are lucky to get off the couch! If you are going to run a commercial about an illness, make it REALISTIC.

18. Something I really miss doing since I was diagnosed is: hitting up amusement parks and riding lots of roller coasters! I have always loved roller coasters – the bigger, the faster, the loopier, the better. These days, not so much which is why I think I love WDW even more now since the majority of the rides are more my speed!

19. It was really hard to have to give up: Krispy Kreme Donuts. Darn you Celiac disease!

20. A new hobby I have taken up since my diagnosis is: you are reading it! 🙂

21. If I could have one day of feeling normal again I would: eat a lot and ride a lot of roller coasters (which may not mix well by the end)

22. My illness has taught me: that I am so much stronger than I would have ever given myself credit for and that I serve an amazing and loving Creator who is in this with me and that promise is enough to keep me pushing forward when I don’ t know why lies ahead

23. Want to know a secret? One thing people say that gets under my skin is:  “I know my friend who’s second cousin has an aunt that has what you have (they never get the name right) and they took this organic vitamin drink that will cure you and you will never hurt again as long as you live. You just need to subscribe to this monthly delivery of the magic potion that will cost an arm and a leg but it worth that because it will heal you.” PLEASE DON’T.

24. But I love it when people: ask how they can pray for me or help me around the house with things that might be difficult for me to do or take Abby for a playdate when I have a flare

25. My favorite motto, scripture, quote that gets me through tough times is: Hebrews 6:19 “We have this hope as an anchor for the soul, firm and secure”

26. When someone is diagnosed I’d like to tell them: learn to give yourself grace and time to adjust and find their “new normal”

27. Something that has surprised me about living with an illness is: that even doctors can be ignorant and it is ok to fire the ones you feel do not have your best interest at heart. If something in your gut doesn’t feel right, get a second option. You need to be your own best advocate.

28. The nicest thing someone did for me when I wasn’t feeling well was: send me a handmade hot pack with a lovely heartfelt handwritten note attached.

29. I’m involved with Invisible Illness Week because: it is a cause worth fighting for. The world needs to be made aware of invisible illnesses as well as education and resources.

30. The fact that you read this list makes me feel: not alone in the struggles that I am going through. It is nice to know that there is someone who can read this that can say “I understand” and really mean it.

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11 comments on “30 Things About My Invisible Illness You May Not Know 2013

  1. Diane says:

    #23. Shout that from the mountain top. Friends that mom and I have avoided for one year because of pushing “these amazing vitamins” saw my mom last week. The first thing out of their mouths: “Diane really needs to try these vitamins.”
    My mom told them “don’t ya think if it were that easy she would have been cured years ago?”

    On another note, I learned something new about you – you are a runner too! I ran cross country in high school. I miss it terribly. The last time I tried to just go for a run since I was “feeling okay” one day, I ended up in the ER three hours later.
    I miss running so very much.

  2. Joy in AL says:

    I’m gluten intolerant. You know what I hate? “Oh, a little bit won’t hurt you”
    I want to say, “No, it won’t hurt me right this second, but in 30 minutes I will have _______” (insert nasty symptom)

    • Jamee says:

      Oh my goodness, YES! The tiniest bit of gluten can set off an awful reaction! I have very violent reaction so I can totally relate to your quote! It is awful! I was at an event once and got contaminated with gluten and it was not pretty and was so embarrassing! People cannot understand it when you don’t live with it!

  3. Brooke F (@FruglTrophyWife) says:

    my husband is a hemophiliac. years later, I still want to punch my aunt, who suggested I pray Ezekiel over Jay the next time he has a bleed. he is a walking miracle BUT when he has a bleed Recombinate is what he needs, not your twisted not your VooDoo approach to scripture.

    • Jamee says:

      I completely agree (and love your description of twisted VooDoo approach to scripture)! I hate when I am told that I am still sick because I don’t have enough faith, putting too much trust in doctors versus God, or am not praying hard enough. I completely believe that God is Healer but for the time being, illness is a part of my life and medical treatment is as well.

  4. Ugh, I know we’re not supposed to comment on this, but is it sad I was super jealous when I saw you only take 12-15 pills a day? Your maxium is more than half my minimum.

    Super rancid pill burps. You know what I’m talking about.

    • Jamee says:

      This is actually the least amount of meds I have taken in YEARS. I finally looked at my doctors and said enough is enough. I was done with taking meds that were only minimally effective with crappy side effects so I went down to only taken those meds that are medically necessary or that are actually effective at managing my symptoms. I was tired of taking a handful of mes every day that were only minimally effective and had to make a change,

      • I get very frustrated with my meds situation. I’ll stop taking something thinking I can do without it, then a few weeks later I’ll get too sick to move and I’ll go back on whatever it was and seem to get better.

        Its impossible to say what is the meds and what is just me being sick. Sometimes I think none of them do anything at all. Sometimes I miss a dose and spent an entire day puking.

        My doctor has been trying to arrange for me to meet with a pharmacist, but I haven’t been able to get an appointment.

        Its nice to her about other people like yourself who are able to get it under control. At least until we stop to think about 15 pills a day being considered ‘under control’.

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