LAST week was National Invisible Chronic Illness Awareness Week!
As is typical with chronic illnesses, I was not able to complete this due to some symptom issues-until now. It IS still the 15th…so I hope I get some credit for getting my post in under the wire!

I found out about this from fellow blogger, Lindsey, of Musings I’d a Dysautonomiac – you can read her post here: http://dysautonomiac.com/2013/09/11/invisible-illness-week-2013/

Invisible Illness Awareness Week also encourages bloggers to complete the “30 Things About My Illness” questions – see my answers to them below.

1. The illness I live with is:

Autonomic Nervous System Dysfunction (which comes with a mega-long cast of not-so-fun individual issues such as intermittent gastroparesis, severe dry eyes; small nerve fiber neuropathy; labile blood pressure/sudden drops or increases in BP, chest pain, tachycardia/palpitations, etc.); Unspecified Connective Tissue Disorder (joint pain and swelling, liver inflammation, vision disturbances, sun sensitivity, livedo reticularis, Reynaud’s Disease); Sacroiliac Joint Dysfuction; Chronic Migraines; Delayed Sleep Phase Disorder/Severe Insomnia

(Sounds like I belong in a nursing home…at 49.)

2. I was diagnosed with it in the year:

I was diagnosed with “autoimmune issues” and “Reynaud’s” in 1987…the rest just kept on coming.
The autonomic disorder surprised me in August 2012 with 3 ER visits and a week long hospital stay which lead to my diagnosis,

3. But I had symptoms since:

I had the migraines since 1975 and the sleep disorder since 1968 though…

4. The biggest adjustment I’ve had to make is:

Finding a reason to just keep going on, day to day. Half of this stuff took away my ability to be dependable enough to continue my career. Then the rest of the illnesses took away my resilience and perseverance,

5. Most people assume:

Probably that I’m lazy or just trying to get sympathy or attention.

6. The hardest things about mornings are:

I never know how I’ll feel – what joints will hurt or be swollen, if my SI will be out of place, or if my BP will be too low or too high – or how my heart will respond when I sit up. I never know when – or if – I’ll get any sleep at night, so my morning may be your afternoon.

7. My favorite medical TV show is:

It WAS “House.” It was one of the most medically accurate, yet the most unrealistic shows in the medical genre. There is no such thing as a doctor that is a “diagnostician” like House. We all just WISH there was! I did learn how to do differential diagnoses charts from the show, which my docs seem to appreciate – they show the connections between all my weird medical issues.

8. A gadget I couldn’t live without is:

My Interferntial Stim Unit (I have 3. My favorite is my Empi IF3 – as it is VERY strong).
I’m also fond of my iPad Mini.

9. The hardest part about nights are:

Wondering whether or not I’ll get to sleep.

10. Each day I take:

Lots of breaks to lay on the floor to get my heart rate to come down, and my BP to stabilize. It also gives my SI and painful joints a break.

11. Regarding alternative treatments I:

Have tried literally just about EVERYTHING out there – including, but not in any way limited to: reiki, chiropractic, all types of massage, acupuncture, Thai yoga, Chinese herbs, more supplements than I care to think about, EMDR, CBT, “voodoo acupuncture” (done by a counselor without my knowing what she was doing) – all a HUGE waste of cash – except for massages, as they do feel good, but aren’t a cure by any means. I honestly believe that most alternative treatments that “work” do so due to the “expectancy effect.”
Sorry folks, but I’m a scientist.

12. If I had to choose between an invisible illness or visible I would choose:

Definitely VISABLE. I am SO SICK AND TIRED of being told, “you look just fine to me.” If I looked sick, maybe I’d get a bit more attention from the medical professionals as well, and people would respect the fact I was sick and let me sit down on the subway so I don’t have to sit on the floor (gross) to keep from passing out when my BP drops.

13. Regarding working and career:

Whats that? My career in the legal field was put to an abrupt end when I wasn’t allowed to recover from my 4th back surgery -it was “come back full-time or leave.” I managed to get my biology degree and worked briefly in biotech until my medications and pain made it impossible for me to maintain any sort of schedule. Now, with the addition of the autonomic disorder – I can’t even work a volunteer job. I’ve tried. All this medical mayhem makes me unreliable – which is NOT a personality trait I had before and is completely attributable to my medical weirdness.

14. People would be surprised to know:

I really don’t want to go on living. It’s just getting worse. I watched my mother decline miserably. I don’t want to get there.

I’m so hurt by the people in the so-called support networks that choose to ignore any facts I present to try and help them learn about their conditions and how to appropriately advocate for themselves…my docs tell me I should use my knowledge to help others, but no one wants my help. It leaves me feeling quite useless.

15. The hardest thing to accept about my new reality has been:

I will never be the person I was on track to being 12 yrs ago.

16. Something I never thought I could do with my illness that I did was:

Went zip-lining in 95 degree heat in the California desert. It was awesomely and very difficult and worth every pain, palpitation and the post-sun welts and migraine.

17. The commercials about my illness:

There aren’t any…unless you count the ones that cover the autoimmune stuff like RA, which my connective tissue disorder fall under). They are so unrealistic. If you take those type of meds (“bio logics”) that they advertise, you CANNOT do the things they show the people doing. You can’t get bruised, bitten by bugs, or travel to places that don’t have health standards equivalent to the US. A good friend of mine died because he was on one of those meds – for “moderate RA” (an autoimmune disorder) – had a minor accident that resulted in an internal bruise – missed by the docs – infection developed – and he died 24 hrs later. So the commercials for the autoimmune illnesses are… INACCURATE.

18. Something I really miss doing since I was diagnosed is:

Having a purpose. (See. 14, above)

19. It was really hard to have to give up:

Working out with weights.

20. A new hobby I have taken up since my diagnosis is:

Napping.

21. If I could have one day of feeling normal again I would:

Find someone to go country dancing with – not line-dancing – but two-stepping, swing dancing – the couples stuff. After a good long workout in a hardcore gym. Then eat a HUGE steak and lobster meal. And have an alcoholic beverage or two, preferably with little umbrellas.

22. My illness has taught me:

To be grateful for the tiny things I can complete that most people do without thinking.

23. Want to know a secret? One thing people say that gets under my skin is:

When people say I must be OK if I’m out driving or going places.
When people say in a snarky way, “I wish I could lay around all day.”

(I stole this next part from Lindsey-because it’s EXACTLY how I feel): Really? Because I wish I could go to an office everyday and make a difference. Remember, it’s not like we stay home when it’s time to work, but we’re out partying and having fun the rest of the time.

24. But I love it when people:

Are nice to me and understanding. Which is VERY rare here in MA.

25. My favorite motto, scripture, quote that gets me through tough times is:

“He who has a why to live can bear with a kist any how.” – Nietzsche

26. When someone is diagnosed I’d like to tell them:

Get ready to be your own best advocate. You are in for a battle with almost every medical professional you will meet. Good luck finding doctors to help you – but be willing to take advice from people like me that know how to navigate the system, know how to find the good docs, and know how to research the issues. (I really get upset when people on social boards plead for help, then don’t respond when I offer to help them. I guess they just want to whine.

27. Something that has surprised me about living with an illness is:

No one wants to be friends with a sick person. Period.

28. The nicest thing someone did for me when I wasn’t feeling well was:

My husband lets me nap whenever. He understands “sleep debt.”

29. I’m involved with Invisible Illness Week because:

I want people with chronic illnesses to start being proactive about taking control of their healthcare and the course of their illnesses.

My negative experiences with the so-called support networks haven’t been at all positive – if anything they support the continuous whining and complaining – which is quite UNhealthy. Some of the boards sound like a game if “can you top this?” – each post about aches, pains, pills and total cluelessness about the conditions they have is “worse” than the next!!

I don’t see how the enabling and encouragement of constant complaining is considered “advocacy” or “raising awareness” or “support.”

I believe that by teaching people to do responsible research, to gather the facts about the illnesses they have, and what they CAN do about their issues IS advocacy and support.

30. The fact that you read this list makes me feel:

Surprised.
🙂

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Comments
  1. I know it’s been a while since this has been an active post, but I just received my diagnosis, and this was very informative and BEYOND familiar. I’m not one to whine about what I have. I live by the motto that life is a b**** and then you die. I also always try to remind myself that at least I am alive to be this miserable, as opposed to my 5-year-old daughter living without her mom. I already beat stage III cancer. I will not let this win!!

    • Lori says:

      Thanks for your comment! Best of luck with this…it has many faces as time goes on, making treatment horridly difficult. Hate to say it, cancer is easier for docs to understand and treat…autonomic conditions – heck, most docs have never heard of them not have they read anything about the meager tx alternatives.

  2. Fran Cherry says:

    Hi there, I nominated you for a Liebster Award. Here is a link to my post where you can get the instructions for accepting the award. http://30somethingwitharthritis.wordpress.com/2013/11/18/accepting-the-liebster-award/

    • Lori says:

      Thank you for listings. It feels good to being knowledged by the interweb masses.

      I know you didn’t make up the rules…Sooooo, I just want to say that
      if I was not recovering from a serious surgery and had several hours in which I could focus, I’d comply with the laborious writing assignments….It sure would be nice if these accolades were truly philanthropic and not bordering on a punishment Bart Simpson might receive in after-school detention!!!!!

  3. Christine says:

    I read the whole thing! As you know, I feel much the same way, on so many levels. Thank you for your honesty! It makes me feel far less alone.

  4. mum6kids says:

    Much of what you have written here applies to me too. Not all, but then we’re all different. But thank you for putting it out there. Raising awareness is being useful 🙂

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