Chronic Illness Awareness Week Part 1

I’ve mentioned before that there are multiple chronic Invisible Illnesses in this household.  Indeed, there are just in me.  Recently I’ve had the mixed blessing (people who understand what I go through; people who understand because they go through it too) of coming across some great bloggers with Chronic Invisible Illnesses.  Many of them will agree with me when I say that I don’t have a clue how people who don’t have Jesus Christ in their lives get through their days.  he knew pain that none of us will ever have to know because he did it for us; for me.  We have a God who suffered, who was tempted in every way every day so He knows what we go through.  He has the ability to remove the thorn from our collective sides (if you’re unfamiliar with the story, the disciple of Jesus named Paul spoke often of the thorn in his side.  He prayed for Jesus to remove it and he certainly was able. After all, He’d healed so many yet in His infinite wisdom He chose not to heal one of the greatest contributors to the writing of the New Testament).

CPA Logo

There is so much controversy about why.  Doubters and believers both will often, at one time or another, say or think at least, if He’s such a strong, powerful, wise, kind God, why do I still have___________ (fill in the blank(s).  I’ve thought and prayed that.   But I choose to still believe in Him just as I believe in air though I can’t see either.

I’ve been plagued by chronic invisible illnesses nearly, if not all of my life.  Mom says I was a sickly infant and toddler and by age 5 diagnosed with and put on medication for, asthma.  I’ve been on medications ever since.  My most recent hospitalization last spring added 4 intra-venous meds while I was inpatient and I came home on a much higher than maintenance dose, yes I take prednisone every day of my life and always will, and at least 3 new prescriptions.


Medicine (Photo credit: miragechopin)

And unless you catch me in an uncontrolled attack, which still happen despite 7(?) or so meds I take daily,(I can’t/won’t keep it all in my head, it’s on paper) I look fine.  People glare at me when I park my handicap, w/c ramped van in a handicapped parking space because I don’t have the usual hang tag   I have handicapped license plates; they mean lifetime.  And asthma is one of several conditions which are all chronic and all invisible until uncontrollable, unmask-able symptoms arise.  Oh, yes, we with these conditions (I prefer that word to diseases, though they are diseases, just sounds less harsh to me) masquerade a lot.

Another invisible illness I share with many, many identified people (now) is fibromyalgia.  Most people know someone who has it.  I’ve found fellow bloggers who have it, and we all do what we can, when we can.

I just love this e-card “Fighting Fibromyalgia” posted.  It’s how we “FM’s” feel often.  Though when I was finally diagnosed about 20 years ago after going round and round with severe pain for years, just to add injury to illness (yes that was deliberate) so, so many, including MD’s didn’t believe it was a legitimate diagnosis!  I was working as a unit secretary, 20 hrs./week, handling all patient charts, and in such agony when I handed in my resignation the head of nursing said something to the effect that I was grey from pain and she wondered if she was going to have to make me leave.  But she only took the resignation when I, at her demand, changed it to a status change to per diem hours.  And she hired me again for full time, creating the same  job, but in a new, sub-acute setting that has a lot more activity than the long term care most think of when they hear nursing home, rightly so.

Well, enough for day one of the week.  If anyone wants to do a guest post with their own story, please email me.  And, of course, I love comments. 🙂


About craftythriftydecoratingwifemom

I thank God for all the wondrous gifts he's given me daily. Reading many of your blogs has inspired me to get busy and stay busy doing things I used to enjoy and just fell away from. And you've given me courage to try new things I've never done before, things I'd have been afraid to try a few months ago. Thank you for your unknown contributions to this woman's life.
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10 Responses to Chronic Illness Awareness Week Part 1

  1. Kathryn Couvillion says:

    Just want you to know that I happened upon your blog while reading a friend’s daughter’s blog and have been following for a number of months. I am inspired as I was diagnosed with asthma 2.5 years ago and know how tough my minor struggle with the disease has been.

    I do not blog myself – tho I probably could/should, but would like to encourage you to continue.


  2. Pingback: Tips for Coping & Caring For Chronically Ill Children & Sending Them To Nursery School | Child Day Care Centers & Pre Schools Rated By Real Parents - FREE

  3. I found your blog just recently. I am currently living with unbelievably bad pain in my feet so much so that most days I can’t walk normal and this wk just to walk at home I must hold the walls and rest after each step. It looks as if it might be fibro as all other possibilities are negative. I realised this wk that I haven’t yet accepted this is my lot in life. Hearing others stories will I believe help get me there. Thank you for sharing. We too have an Aspergers son, he is high functioning and does quite well though he does has his individual traits that are quite challenging. I believe God has big plans for him. I too often marvel at how hard this life would be without God., He makes the impossible possible. My hubby was diagnosed with rheumatoid arthritis in Jan this yr as well. I’m looking forward to this yr being over.

    • Not been a good year, for sure. We all have those. Right now we’re trying to ID the cause of my worsening anemia, unless we can find another cause I will have an endoscopy/colonoscopy (for which I wouldn’t otherwise be due for 4 years) next Fri. I haven’t personally experienced much of the foot pain you describe though at a support group others spoke of their feet feeling like they were walking on golf balls under their skin, OUCH! RA is no walk in the park either. I hope they find him effective help really soon. As for your son, I wish you well with him also. I love the statement “If you’ve met one person with autism (ASD) you’ve met one person with autism (ASD).” They can be so different; as is true of any people group.

      I[m thinking of changing the focus of my blog to more illness-related and faith-related writing and less crafting and thrifty, etc. What are your thoughts? Janet

      • Personally I like to read about life experiences, whatever that may be. It’s good to have shared/similar experiences though not essentially as sometimes I read about lives totally different just because they are interesting. I followed your blog because of the crafty, thrifty, Christian wife mom themes in no particular order and was glad to find another two shared experiences. It’s really up to what you want to write about – what you are passionate about will shine. I find it hard to write about faith and admire those that can; Though some are too heavily teaching or challenging for me because read blogs for light reading not deep study, – but that’s just me. Blessings

  4. And you write well, it’s enjoyable, easy to read and follow along, even long passages. So just keep on keeping on…

  5. Pingback: Invisible « Just Breathe: Slow Deep Breathes Positive Solutions for Living with Chronic Illness

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