Celiac · IC · PTLS

When the New Wears Off. . .

I am post one year and two months into this unhinged reality that has latched its talons firmly in me. Gosh, it really seems like an eternity some days in some areas- almost like I’ve dealt with this my whole life.  It’s quite astounding as I guess I have in some way or another.

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I eluded to another diagnosis looming over me in a previous blog. I’m not sure who caught that or if anyone actually reads these things.  🙂  Yes, just prior to the wedding I’d been to the doctor to see about this horrid pesky rash that plagued me. I had thought it to be shingles.   I’ll be candid if you can manage.  Just one leg, on the back and inside mostly on my calf. It itched something horrific but didn’t have the pain everyone associated with shingles. Hot water was the only thing that would quiet the rage.  And yes, I am well aware that scalding hot water isn’t good for your skin.  The doctor’s visit confirmed my googling diagnosis to be Dermatitis Herpetiformis.  Basically, it is a skin presence and representation of celiac.  If you’ve never heard of Celiac Disease, I urge you to educate yourself.  The ranks of people that have this unforgiving issue are climbing.

So, I know what you are thinking.  You don’t eat gluten- how can this be? How could you be having a celiac rash when you aren’t even eating foods that contain gluten/wheat?  That is a very good question.  And the answer is this; my doc says, there are other foods that have the same similar reaction on the body as gluten.  When they process and look the same in the gut as wheat and gluten. Therefore they trigger the same immune response- kill, kill, kill.  So, things like: rice, oats, tapioca, potato.  Yes, all of which I have been eating in some form or another could be the hidden culprit.  My bladder has improved so that I am able to tolerate some food that at one time were just not an option.

Is there a test for Celiac?  Yep.  There is a blood test.  The doc says, the powers that be, those who regulate the numbers lowered the number needed to be diagnosed accurately with celiac to prevent too many people being “misdiagnosed”.  In many people with clear and present symptoms the blood test would show negative for the disease.  In essence, the blood test isn’t reliable.  There is another test in which they test your fecal matter for a whole host of allergens not just wheat/gluten.  It’s quite pricey and not covered by insurance.  So, as to the reason I’ve not had it done just yet.   The rasheous scars that I now bare on my leg are evidence enough to me of the condition. The benefit at this point would be to know for sure what foods are causing the inflammatory response.

Can I tell you how obscene the rash was?  When I wear Capri’s, there is always at least one person that says, “Celina, OH MY, YOUR LEG!”  So, in order to prevent the unwanted attention and random thoughts of me having leprosy or something like that I wore pantyhose for my Bug’s big day. I didn’t require any extra attention other than the standard- pointing followed with a hushed whisper, “That’s the MOB, (Mother of the Bride).” 🙂  Actually it’s been years since I’d subjected myself to that sort of torture and it was as miserable as I remembered. It ranks right there with a corset.  But it worked, not a single – sigh and pitiful comment.

The new has most definitely worn off.  I have three diagnosis chronic conditions on my list.  I’d been told that it would be that way.

I’ve also had the flu and a mutated cold for weeks now.  Barricaded inside my home, I finally took cold medicine and triggered bladder mayhem.  My immune system is on red alert and leaves me in the lurch about once a day- crashed and unable to function.  So, I sleep when I sleep and work when I can. Yesterday, the chair held me hostage with a heating pad stabbed in my back.  I couldn’t call its bluff, so I just sat there and rested the day away.

Can I tell you that I know this isn’t fun for me but it’s not fun for my family either?  My guys are so sweet they brought home BBQ from our favorite shack and served it up on fine china.  When the new wears off- that’s when the tough get going.  Here are a few tips for dealing with a family member with a chronic illness.

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  • Encouragement (I don’t need reminding of where I fail. I know those areas. Praise their small accomplishment.)
  • Help them accomplish. (Offer to help wash, change the bed, to do it together!)
  • Don’t focus on unnecessary details. (What made you sick this time?)
  • Don’t be angry at them. (for not just not being able)
  • Please don’t tell them it’s all in their head. (Honestly, really- who would choose this, willingly)
  • Pray with them, for them. (God answers prayer and give grace to those who ask!)
  • Challenge the mind! (Encourage reading, studying, writing, – anything to fight depression!)

 

 

”Saying, Father, if thou be willing, remove this cup from me: nevertheless not my will, but thine, be done.” (Luke 22:42)

 

Fighting for us Spoonies,

~Lena

 

 

 

 

 

photo credit: Roberto.Trombetta <a href=”http://www.flickr.com/photos/29370225@N03/24904025817″>bang pu</a> via <a href=”http://photopin.com”>photopin</a&gt; <a href=”https://creativecommons.org/licenses/by-nc/2.0/”>(license)</a&gt;
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