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anyone get edema? and how to nudge others to understand

ironictruth

By ironictruth
in Coping with Celiac Disease

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ironictruth Proficient
ironictruth
Posted

Every day since this last glutening (the eye opening holy s$#& that was a glutening experience, confirmed by DGP antibody) I hope to get closer to getting rid of tingling, numbness, gasping for breath (anemia from in hospital resolved) , nausea, stomach pain, dizziness, heart skipping beats, swollen painful thyroid, muscle twitches, anxiety, weird rash on my upper tummy (not DH). To make matters worse, my heart had been given the green light and has been worse and so my endo wants me to return to the cardio doc.

I am now suffering from head pressure, migraines, eye strain and....my celiac sibling also had head pressure and eye pain, he says the inflammation can travel to the brain. Even my teeth ache. 

But now... edema? I lost 7 pounds since late July but my lower legs and tummy are swelling up and I look fat. Does anyone get this?! Ugh, I cannot breathe and am bloated but freaking thirsty. 

Naturally, being the neurotic i am, I am terrified. I was just glutened around the 24th and some of these symptoms are new to me but holy s$#&. I guess I am scared because a CT scan in March revealed nothing and a recent one shows a calcified adrenal gland. So I am scared of what my body will attack next. 

Plus, I have a wonderful boyfriend who hears WAY too much about my health and paranoia, but sadly, knows next to nothing about celiac disease, so when I rant I think he thinks I am overreacting. He sweetly buys gluten-free foods, which is kind, but I have to avoid those now too for the most part. As a result of all this, I thought it would be a good idea for us to get some distance (he has been under a lot if stress and I am adding to it). I love him, but I admit to being a bit hurt that he has not bothered to try to educate himself on the disease which has destroyed the last 8 months of my life and made me almost non-functioning recently. In his defense, it was only confirmed recently, but highly suspected for months. The lack of knowledge makes keeping a shared kitchen when I am there (half time) hard because I am not sure what is safe. I do not use the toaster and I have my own pan now and cringed when it was in the sink and he dumped dirty dog food, probably gluteney, water all over it. I think he knows the clean knife rule at least....I mean, I cannot keep all this straight myself! And also, i feel like a major burden to him too now. No going out to eat, constant complaints, trips to the ER...

I do not want to lose him but this is such a major part of my life now, I am not sure how to express that. I did try talking to him today, but he got defensive. To be clear, he has checked on me when with my son and scared, visited in the hospital, packed hospital bags, etc, but I am pretty sure he thinks I am nuts. Who wouldn't with a laundry list of symptoms which were not there 8 months ago?

Any advice on how to smoothly get others to read up? Honestly, he is probably so sick of me talking about it he has no interest in learning about it. 

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cyclinglady Grand Master
cyclinglady
Posted

You can lead a horse to water, but you can't make him drink.  That about sums it up.  Honestly, I think you need to stop talking about it.  Keep a bin of your stuff.  Do not keep it in his kitchen.  Eat off paper plates and use plastic ware for a while if it will make you feel better!  Re-wash knives or whatever you use before you wash it.  Clean your stuff and put it back into the bin right away.  Use lots of foil and parchment paper.  Put bright pink duct tape on everything that is gluten-free and yours (not to share) in the frig or pantry.  Push it back where he won't easily see it or make a dedicated shelf just for you.  I do all these things when I stay at my parent's house or their vacation house which is normally packed with gluteny people.  You can do this!  I do not let stuff sit around in my parent's kitchen.  They might contaminate it.  So, I clean while I cook.  Bin things.  My bin actually is stashed in my mom's pantry and it's clearly labeled.  I used to put it in a closet when I left to go home.  Do you think someone's going to go into a closet to borrow your pan and make french toast?  No way!  

Talk to your brother about celiac disease.  Don't talk to your boyfriend.  Guys like to fix things, but he can't fix celiac disease.  Join or start a local celiac disease group.  Chat on this forum.  But stop talking about your illness with others who are not ill.  While I find things fascinating, others who do not have an illness are turned off.  

What did you talk about when you were well?  

He's a guy (no offense to guys reading this).  Being interested in health issues might not be his thing.  My hubby is into the stock market, investments....BORING!  I like health and athletic activities.  You will never find him on a bike, running or swimming.  The guy's a couch potato (probably will outlive me though).  We agreed to not talk about those things with each other.  Instead we focus on my kid's activities, movies, vacations, history, museums...the list is endless.  When it comes to a health issue, I'm on on it.  Reading the internet, talking to my ER doc neighbor.  I love it!  My husband defers to me.  Yeah, it's sometimes a hassle now that I take all the seniors to their doctor's appointment even though some are my in-laws, but it's my responsibility because it's my expertise and hobby. Ya see what I mean?  

That's my two cents.  Think positive.  You will get well.  Learn from your mistakes and move on.  Do you know how many members are on this forum?  Most leave because they get well.  They move on and live their lives.   You can, I repeat, you can do this!  

ironictruth Proficient
ironictruth
Posted
  • Author

My mother is visiting from out of town and we are both amazed at your advice. You always have something great to say but this one I am printing out and stashing for those times when I am discouraged! Very positive motivating advice. Thank you!

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