Living With An Invisible Condition

Living with an invisible condition is maddening.  You look normal and ok most of the time, but you're not.  You can be totally fine one moment and unable to do much the next.  You feel crazy, you feel like you're letting the world down, and you just want to be normal.  

Here are a few things that I would like those of you who are lucky enough to not have an invisible condition to know.

I am my biggest and worst critic.

I often look in the mirror and wonder if this inability to move right and/or think straight that pops up out of nowhere is all in my head, especially when all tests so far have come back "within normal".  I think to myself, if I just wanted it badly enough, I could make my brain or body work.  It's not true.  I truly can't make things work that refuse to, but I want to make them work.  I feel like the biggest let down to those counting on me, and I would do anything to be "normal", but I am not.  I struggle with feeling less than, and I want to be what I was before.  I mourn the loss of who I was as I work to accept who I am now.  It's a hard process, especially if you don't have support, and even if you do (like me).

I need you to believe the best about me even though things are different.

Unless you suffer from or have suffered from an invisible condition yourself, you will have a hard time accepting or even understanding all the changes that take place in the life of someone with an invisible condition, and believe me when I say that I am kinda glad you don't "get it".  However, I need you to trust in who I was.  That person is still here.  The person who was there for you when you needed someone, the person who helped out when she could, the person who volunteered for things, the person who joked and smiled and wanted to go to that event - I'm still that person.  I still want to be there in any way that I can, but that isn't always possible now.  It may seem like I'm "always" saying no to things, but I will say yes when I can.  If I am saying no or cancelling last minute, it's not because I hate you, don't want to, or am trying to get out of something, it's because I truly cannot do it.  Believe the best about me - that I will be there in any way that I can for you - because that's what a true friend is and how I roll, and it's what I choose to believe about you, too.

I probably won't ask for help even when I need it.

I am working on this one.  I feel like I'm letting you down by not being able to do the things I used to be able to do, so I will probably not ask for help with the things I'm struggling with, too.  I will make appointments whenever I can on days that I know won't interfere with my husband's work schedule so that he doesn't have to miss work.  I will take a week to do a project that should take an hour simply because I don't want to burden anyone else.  I even have a special to-do list for days when I am feeling capable and will leave those tasks until those days (no matter how badly they need to be done) simply because I don't want to ask for help when I know you're already busy, and partly because I need to know I can still do things on my own.

If you can't tell I'm having trouble, that's on purpose.
 

I work very hard to look normal.  I try not to use my cane, even if I could benefit from it.  Every day I have to choose to find joy, and I look for it.  I scour God's Word for encouragement, I surround myself with people who will pray with me and for me, I hum uplifting hymns and songs, I play and laugh with my kids as I'm able, and I find ways to encourage others.  If my condition is truly invisible to you, I've done my job.  Life is too short to live in the darkness.  I choose light, and I choose to "bloom where I'm planted" whenever I can.  I fail sometimes, and I can't always look "normal", but I will do my level best to do so!

This isn't everything, but these are the main things.  

Maybe you have more questions or are curious about something - feel free to ask via commenting below or via email.  I'd rather you ask than assume. :)

Maybe you are wondering how you can help me or someone like me who is struggling with an invisible condition.  I know you can always pray for me and lend an ear when it is needed, and I know you can do that for anyone in a position like mine.  Kindness goes a long way, too.  

Invisible conditions are hard, and they are even harder alone.  We need all the support we can get, and I hope I can count on yours.

(This post was originally posted on my original site, Fibro, Fit and Fab!)

What To Do When You Don't Have Food Allergies/Sensitivities, But Your Friend Does...

Me and my family.  I have food sensitivities and my 2 of my 3 kiddos are gluten intolerant, though we suspect we all may have issues with gluten.  My husband has recently been diagnosed with at least 1 food sensitivity, too.

As some of you may know, several years ago I was diagnosed with food allergies to soy, seafood/fish and tree nuts/peanuts.  Though I was told years after that I no longer had those food allergies (if I ever truly did), I do still deal with food sensitivities, mainly to soy, grains (though I do ok with rice), garlic, onions and most types of chocolate/cocoa.  On top of that, two of my kids have sensitivities to gluten/wheat (though I believe we all have some problems with gluten), and my husband has been recently been diagnosed with a food sensitivity to corn (we discovered this via a patch test that left him with basically a 3rd degree burn, so I'd consider this more than "sensitive", but it's not a histamine reaction, so it's not "allergy" either, but I digress), and possibly to soy and milk.

Anyway, I say all that to say this: It is not easy living a life with food allergies or sensitivities, and people definitely don't know how to react to it, especially if the allergy/sensitivity comes on in late childhood or adulthood.  People think they know, but they don't.  They think they understand, and (in some cases) think they know more than you do.  Truth?  They are trying to help and trying to cope, too.  Those of you with allergies/sensitivities are used to all the looks, the odd questions, the "well, I know this friend of a friend of a cousin, and he doesn't...."  Yah, you know what I'm talking about.  The unwanted advice, the ignorance.  But how can they know if they've never been there, and how can they know unless they ask?  I'd rather hear an ignorant question than none at all. 

So, to all of those out there that find themselves in the "non-food allergy or sensitivity" group who want to learn more about how to be a help to those with food allergies/sensitivities, or to those of you who were given this by a friend who does have food allergies/sensitivities and wants you to know/learn a few things, or to those who are just curious, this blog post is for you.  Here are some things from someone who has suffered the life changing diagnosis of "food allergies" and also dealt with food sensitivities that can help you know what to do for your friends and loved ones who deal with food allergies/sensitivities.

1. Know that your friend/loved one hasn't changed, but his/her diet has.  

A food allergy or sensitivity doesn't change who a person is.  They need to eat differently, they need to be more cautious about cleanliness and preparation when and where food is concerned, they have to ask the annoying questions about "Does this have ___ in it?  Was it prepared on a shared surface with something that has ____ in it?  Can I see the label?", etc.  It may annoy you and frustrate you that they have to be so careful, but trust me when I say it is more embarrassing and frustrating for them, and it is necessary to keep them healthy and alive.

2. Know that your friend needs you to believe him/her, and assume he/she knows more than you do about his/her allergy or sensitivity.  

Please, if someone with a food allergy or sensitivity tells you that they can't eat something or asks to see the packaging, do NOT get upset.  They have to avoid the food for reasons of life and death or severe illness or complication - don't fault them for that.  When it comes to packaging, they have to see it; they have to know for sure that the allergen is or isn't there.  It is their life they are talking about, and they have worked diligently to understand food labels and alternative names for their allergen/sensitivity.  It is not a matter of trust in a lot of ways, but a matter of compulsion.  It is also a matter of double checking.  It's better everyone look over the label than no one. 

I can't tell you how many times I have heard of someone being told something was safe, only to have them suffer a reaction because something was overlooked.  We'd all feel terrible if we told someone something was safe for them to consume and they died after consuming it.  Always, always assume that you know less, not more than the person with the allergy/sensitivity.  I always show the labels to someone with a food allergy/sensitivity when I make or bring something to a party.  I want them to know, not just take my word for it.  It goes a long way to building trust and understanding.

3. Know that asking questions is encouraged!  

Ask, ask, and ask some more.  If you want to know what we can and can't eat, ask.  If you want to know how we're doing, how we're coping, ask.  You will find that we are more than willing to educate and share.  Asking questions means your interested, and maybe it will help save a life in future, and make you more aware.

4. Don't assume we're missing out.  

My biggest pet peeve after I got my food allergy diagnosis was people assuming that I was missing out.  They felt sorry for me, not because I was told that eating certain foods could kill me, but because I couldn't have a PB&J or Chinese food or restaurant pizza.  They assumed that I ate nothing but water, and maybe some raw fruits and veggies, milk, cheese and plain, boiled chicken.  They didn't think I could have cookies or bread or anything "yummy".  Seriously!  I informed them that I had to make a lot from scratch and read labels diligently, but there was a lot I could have.  I could even have pizza and ice cream if I made it myself.

With my kids who can't have gluten/wheat due to a sensitivity, I see people looking at them, wanting to sneak them a gluten-filled cookie or other junk food, and it makes me want to scream.  It may not kill them, but boy will it mess up their systems, skin and their ability to think!  Let me be the protective parent (and yes, you can call me a helicopter parent or overly cautious mom if it makes you feel better about yourself) and decide on what to risk and when to risk.  My kids, my choice.  I can make all sorts of amazing wheat/gluten-free things, and there are lots of gluten-free options at the store, including junk food, so don't assume they can't have birthday parties or special treats, because they do!  And, believe it or not, they LOVE rice cakes!  They are not being tormented or "missing out".  They are living, and happier without gluten/wheat in their diets.  Don't make them feel ashamed of it.

5. Invite us over for dinner - we'll bring our own food if we need to.  

Only one family in the years I dealt with my food allergy diagnosis (other than those related to us) invited us over to dinner.  ONE.  They even ran every ingredient by me, made homemade ice cream for us, and let me look at any label I desired to look at.  It took weeks to work out all the details.  It was so nice!  I cannot tell you how loved that made me feel.  It was a blessing.  HOWEVER, I never expected nor asked anyone to cook for me.  I knew how hard it was to cook for me, so I always offered to bring my own meal.  I just wanted the time with others in that classic social setting.  I wanted to still feel "normal", even if my diet wasn't. 

Don't exclude someone with food allergies or sensitivities from your party/social event simply because you feel you have to make all your food fit his/her allergen needs.  You don't.  Ask them to come, and most of the time they will bring their own food or offer to eat beforehand.  If they feel that the situation would be too risky, let them make that call.  It feels so good just to be asked.  I've never met anyone with food allergies or sensitivities that didn't want to be included or didn't understand that food events normally mean bringing their own food or eating ahead of time.

6. Have non-food social events.  

Some people are very allergic to some things, where they can't be in the room with them.  If you know someone like that, have an event where there is no food.  Don't fall into the trap that all get-togethers must have food.  Have everyone eat ahead of time, and then come together in an allergy-friendly location.  It's easier to do than you think, and can be just as much fun. 

You can even do this for kids' birthday parties.  Just have play time, and maybe even have them make a cake out of LEGO bricks or something.  It could be a new trend!  You can always have the cake and ice cream later as just a family, and it might be more special that way, too.

7. Know how to administer an EpiPen and what to do in an emergency.  

There are directions right on the EpiPen that will show you how to administer one, and some people have a "tester" one to practice with.  You can Google "how to administer an EpiPen", too, and lots of sites will pop up.  You should know how to identify the signs of anaphylaxis, asthma, etc.  It could save a life. 

Also, don't be afraid to administer the EpiPen!  If an allergic person ingests their allergen or comes in contact with it or they suspect they have, don't want for them to start showing signs of exposure.  Give them the EpiPen and get to the hospital.  Call the ER and tell them you are on the way and what happened.  It's the surest way to know that you've done all you can to keep them safe and alive.

8. Never encourage someone to try his/her allergen if it's "been awhile since you've had it" without a doctor's orders, and only in a board certified allergist's presence!  

I cannot tell you how angry I get when I see parents or friends who are flippant about a child's or friend's allergies or sensitivities.  My hubby and I have talked, and my kids with the gluten/wheat sensitivity will avoid it as much as possible because it affects their quality of life, and my husband will also avoid corn as much as possible for the same reasons.  If they were allergic, we'd be even more diligent.

If it has been a year or more since someone with allergens has had a reaction to something and he/she wants to see if he/she is still allergic or not, he/she needs to talk to their board certified allergist about doing a food challenge, and it needs to be done at that allergist's office or at the hospital.  It should never been done at home or alone.  It's simply too much of a risk.

If it is a sensitivity issue, then that's a bit different.  You can do that at home or on your own, but you should still talk with your board certified allergist about it first as some sensitivities can develop into allergies and your doctor may decide a challenge should be done with him/her vs. at home. You should also let them know about the results of any trial you do, too, if you do perform a food challenge at home so that you can discuss next steps.

9. Know the difference between food allergies and food sensitivities.  

Food sensitivities are not fatal, but they can leave you very miserable, and can sometimes turn into allergies later on.  Never dismiss a food sensitivity as "preference".  Trust me when I say that they can leave you almost as miserable as a food allergy!  If someone tells you that he/she has a food sensitivity, respect it, and assume they should not be eating it.  They do not need to carry an EpiPen, but consuming the food could lead to IBS, rash, eczema, brain fog, headache and other like symptoms.  My husband's reaction to corn was in the form of basically a 3rd degree burn, so sensitivities can do some real damage to the system!

Food allergies can be and often are fatal.  If someone has a food allergy, they should never eat the food they are allergic to, and if they do, they should use their EpiPen and go straight to the hospital.  Reactions range from hives to anaphylaxis and everything in between.  They could even have seizures.  Food allergies are very serious, and should never be downplayed or ignored.  Someone with food allergies should always carry an EpiPen, preferably 2, with them.

10. Know that a food allergy or sensitivity diagnosis is life altering, and those with them go through withdrawals and a form of grieving process.  

I know my first 6 weeks avoiding the foods I believed I was allergic to sent me into major withdrawals.  I was angry, grouchy, and miserable as my body detoxed.  I also grieved the loss of the carefree life I'd had.  I envied those around me, and hated each and every question.  I was also angry that "everything" had soy in it!  I just wanted to be "normal".  After that passed, I was back to more like "me" again.  I encouraged questions, was free to live again, and felt better than I had in years.  So, if you have a friend going through the "newly diagnosed" phase, be there to support them just like you would an addict going through rehab.  That's what they'll feel like as they detox.

I hope this post has given you some insight or will help those you know understand your allergies/sensitivities a little better.  Life with food allergies/sensitivities is different, but it doesn't have to be lonely or impossible.  With a little bit of respect and understanding, we can all live long, quality lives together.

~*~*~*~

What is one thing you'd like for a non-food allergic or sensitive person to know?

What advice would you give to a friend or family member who just found out they have food allergies/sensitivities?

What advice would you give to a friend or family member of someone who just found out they have food allergies/sensitivities?

~*~*~*~

(This post was originally posted on my original site, Natural and Free.)

Monthly Milestones 2016 {6}

Today is the sixth Monthly Milestones of 2016.  If you want to share a milestone post, just leave a comment below with a link to your milestone post, and I'll pop over and visit it and leave a comment, and hopefully some of my other readers will, too. :)  Normally, Monthly Milestones, where I will be giving you updates on how I am doing physically, mentally, etc., will go live on the first Saturday of every month, though sometimes I may be a day early or late depending on circumstances.

Here is how I am doing as of today:

Me as of today, June 4, 2016, at 235.5 lbs.  My cat, Crush, decided to join me today. :)

1. My weight is a continued frustration!  This is the heaviest I've been in a long time, and I couldn't be more upset about it.  I have been more active, and have been feeling better with some of the dietary changes I've made, but that's not been enough.  I think I know a few things that are playing into it, and I'm going to do what I can to change what I can.
   
   First of all, I have found that I am dealing with a lot of water retention for some reason the last few months.  I kind of wonder if it is due to getting rid of the green tea supplement, but I feel better off of it than I did on it, so I have decided to up my water intake and reduce my sodium intake instead.  So far, that seems to be helping some, so hopefully I'll get a handle on that this month.
   
   Secondly, I am truly a carb-aholic.  I really struggle with eating too much sugar and carbs, even with cutting back on wheat, oats, and corn.  I really need more protein in my diet.  Starting today, I plan to go to a basically "no carb" diet for a few weeks just to try to get my metabolism jump started, and to get my body off the carbs for a bit (think like rehab, so hopefully the withdrawals won't be too bad).  We'll see how that goes. :)  I've done it before and it always helps, so hopefully it will work this time, too.
   
   Thirdly, I struggle with eating when I'm not hungry.  That is not so awesome.  I'll continue to work on that.
   
   All in all, I will keep plugging away at there and my other planned dietary changes, and we'll see what happens.  I will either lose weight or I won't - I can't force it.  All I can do is try. :)
     
2. I've been able to get out more!  Most of May was beautiful, and I was able to get out quite a bit for walks.  I'm hoping June stays that way, too, and my body lets me function enough to walk quite a bit.  I did really well the last month physically speaking, and now I'm having issues again with movement.  I'm trying to figure out if this is just the cycle I'm on with my health issues or what.  This is going to be a process!
    
3. Dietary/lifestyle changes are still happening.  As I mentioned above and in an earlier post, I'm making some dietary changes.  I've cut out my green tea supplement, removed quite a bit of soy and grains (mainly wheat, oats, and corn) from my diet, and will be removing my multivitamin (as it contains soy) next week or the week after, along with making the changes I mentioned in #1 above.  So far I've noticed that food *does* play into how I'm feeling.  It's not 100% difference, and it's hard to know what all is how this health issue cycles and what all is dietary, but I do notice that the less soy and gluten I have, the better I do in general.  I still have some issues, but they are not as bad.  When I do slip up in my dietary changes and have soy or a lot of grains, then I have worse days.  Now, when you avoid soy, you also inadvertently avoid preservatives 9 times out of 10, and it may be that avoidance that is causing me to have better days.  It's hard to tell, and it will take a while to cement it, but it is something to take note of and talk to my neurologist about when I see her again in July.
        
4. I have finished round 2 of my tests, and am waiting on results.  My EEG was last week, and my MRV was on Wednesday, June 1st.  Both went well, there were no pokes (YAY! :D ), and (to my knowledge) they got the information they needed.  I will not have results for at least a week yet, and I may not have them until I see my neurologist in July (sooner if she deems it necessary).  I will let you know when I know. :)
   
   Please continue to pray for me as I seem to be coming out of a "normal" phase and into a "weakness" phase again.  I woke up Thursday morning with weakness in my legs, especially my left one, again.  I had been having tingling sensations in most of my body for at least a week and some minor issues with my arms (especially my left), but it is transferred to weakness now again, though it doesn't seem so bad today.  It may be diet related as I did have some hot cocoa Wednesday night that did contain some soy/preservatives, but it is hard to say for sure.  I've been sort of off since my EEG, so I find that interesting, too.  Anyway, prayers appreciated that we can figure out the dietary triggers, physical activity triggers, etc. that may apply so that I can work on fixing them.  Thanks! :)
     
5. We appreciate your prayers as we make some important decisions as a family.  Due to my unknown health status among other reasons, we have decided that our boys will do a more traditional homeschool program next year.  We are leaning towards Monarch by Alpha Omega, and plan to cement that decision after school is out in about a week.  However, depending on how things go with my health over the summer, there is a chance the boys may have to go back to the local public school again (we plan on keeping our daughter in the local public school for at least another year, and then bring her home if possible).  We'd prefer not to do this, not because the school is bad, but because I want to teach them at home and that was always the plan, but we want God's perfect will in this.  Please pray that God will work out all the details according to His will and glory, and that we will be able to see His will and way in it clearly and undeniably.  Thank you!
   
   Also, please be in prayer for my oldest son, Stephen.  He saw the ophthalmologist yesterday, as he is having issues with strabismus.  For now, they think they can correct it with new glasses, but there may be surgery sometime in his future to correct the issue.  We're grateful that is looking like it won't be any time in the near future, though. :)
      
6.  Blog updates have stalled, though posting has increased! So far, I've been able to make at least monthly changes to this blog and Natural and Free.  Sometimes, I have even been able to make some minor changes, so that's a plus.  I am hoping to do more when school is out in about a week, but I'm not sure I'll be able to.  We shall see. :)

That's about it for now.  How are you doing?  Are you reaching your goals?  Have you tried something new?  Come up with a new recipe?  I hope all is going well with you, and I hope you will leave a comment sharing your thoughts and/or milestones (with a link to your post, if you wish).  As always, I wish you the best of luck in all you do, and hope you will return soon! :)

(This post was originally posted on my original site, Fibro, Fit and Fab!)