The Fire Inside

“The road to success is always under construction." ~ Arnold Palmer

And when you have chronic pain, the construction usually involves dynamite!  

Does this picture look like how pain feels to anyone else?  I'm having a flare up of arthritis in my back and chest and knees.  Along with arthritis flare ups I always pass really gross mucus even though having Moxie seems to be keeping my guts relatively healthy.  I have some stomach inflammation.  Every day right now it's not "what hurts" but "what hurts the worst". 

I'm having dreams of coating my body with that nice white fluffy stuff that firefighters use to quiet flames.  Or rolling in snow and putting out the fire in my body once and for all.  I've consumed bottles of water trying to quiet this fire.  

Over the years, I have heard so many well meaning but ridiculous things that will cure me.  Today, I am dreaming of my own.  Why not?  They might as well be something that sound like they will feel good to me.  I think I will start off with being sprayed down in the firefighting foam and when that puts out the flames so I can stand to be touched, a cold massage.  Then I'm going to eat all the ice cream sundaes that I want to cool down my insides.

What about you?  Any unique ideas to cool down the fire inside?

Happy Holiday Tips

It’s the Holiday season, that magical time that rolls around once every year.  Cheerful twinkling lights, Santa’s, snowmen, candles, platters of baked goods and candies, cards for every relative, friend and business contact, miles of ribbon and bows, toy drives for children, food drives for families, bell ringers collecting for those less fortunate, programs and pageants, gifts and parades, Merry Christmas, Happy Hanukkah, indeed!

For a normal healthy person, it’s a stressful time of year.  The rates of depression are higher than other times.  While many of us dream of that idyllic family holiday eating a nice meal, sipping hot drinks, playing games around a fire, and then exchanging gifts, the fact is that it takes real work, time and money to achieve just that even if you skip the commercialism of the season.

So what about those of us with chronic illness like arthritis and IBD?   Decorating for the season and making handmade gifts, cards and candy used to be things that I looked forward to most.   Now, the pain involved with bending and reaching to decorate has me in tears before I start.   I still want to do all those things but my body has betrayed me.   Feeling guilty for not being able to do what I once could, and still want to do, becomes an endless carol playing right alongside We Wish You a Merry Christmas.  I have endless recipes for cookies, cakes and candies.  I look at those now wistful and wishing.   And the dinners and feasts!  All those foods we just can’t tolerate or are tempted to try only to suffer in pain later. 

What can we do?  How can we make it a more joyous time and not feel guilty, depressed, in pain or worn out?  For starters, we need to speak up, especially those of us who are mothers.  We are not the only ones who can put up and/or decorate a tree.  It doesn’t have to be perfect.   We don’t have to decorate the whole house. 

The baking and candy making, what do we do about that?    Pick a favorite and enlist help.  Make one or two, one day or evening and that’s enough.  It’s nice that Aunt Sally can still make 22 different kinds of candy and deliver them to everyone in the neighborhood and family but you aren’t Aunt Sally.

Do what shopping you are capable of doing and that’s enough.  One gift really is enough and it really is the thought that counts.  Get it wrapped.  Use gift bags and boxes.  That pretty paper and bow is just not worth the ache.

Do you have IBD or an ostomy like me?  Don’t go overboard at the dinner no matter how good it looks or smells or what anyone says.  It is just not worth it later.  Ask what is in it if you don’t know instead of taking a chance.  When you are being pressed to try something and you know you just can’t, ask to take a little home for a later instead.

Mostly importantly, say no.  If you know that you just can’t do something and it’s going to cause you pain, say no and do not feel guilty about it.  It’s your holiday.   Say no, reduce, pare down and stop feeling guilty until you are having that idyllic family time one morning or evening with a meal, games and a gift or two.  

For those of you with normal, average bodies, please give us a hand if you can.  You don’t even have to literally help out with the tree or baking if you don’t live in the same house with us.  Just please cut us a break expecting the same that you would do.  Addressing cards hurts many of us, so you may get a card with a printed label, an e-card or no card.  It doesn’t mean we didn’t think of you or didn’t enjoy your card.

We loved those cookies you sent us and we’re sorry that we were not able to bake 12 dozen to reciprocate but making a small batch with our children is really all we were able to manage this year.

When we turned down your famous casserole, we really didn’t mean to hurt your feelings, honest.  A few bites of vegetables from all those casseroles is really that offensive to our insides.

Forgive us for not being able to accept the invitation this time but please don’t stop inviting us or our family.  Next time, it might work out that we will feel better, not have a commitment 2 days in a row (which our bodies won’t allow) and we will be there.

Most of all, just love us, no matter what we can or can’t do.  Because gathering around a fire or tree with family and friends and no pressure, only smiles and laughter really is the most important thing this season.  Merry Christmas, Happy Hanukkah, Happy Holidays!

IBD, Hysto, Frustration

It's December!  I want to say, how did we get here?  Wasn't it just April?  I feel as if I just blinked and the months have gone by.  And, by the same token, I feel as if I had been sidelined yet again while life passed me by and I could do nothing but watch.

When Moxie (my stoma) entered my life and half my guts left, that was supposed to mean the end of at least half my pain, the abdominal pain.  It didn't end.   I had the colectomy in March of 2013 and in the summer of 2013 started trying understand why I was still having low pain.  No, it wasn't a urinary tract infection.

I think I was tested for every kind of infection a woman can have including several that I would probably have gotten divorced had the result been positive.  Once again, tests leave you feeling violated and humiliated.  An ultrasound.  That doesn't sound bad.  Yeah, until you get in the room and discover how and what.

So after being subjected to tests that rob you of any dignity with IBD, when having to do them at a GYN looking for a problem it was NOT any easier or any more dignified.  And you know what?  The pain was the same.  I don't know how I would have known the difference between the two abdominal pains.  In fact, I wasn't sure that I did know the difference except that I kept a calendar and charted pain.  One pain made the other pain worse.  I already had the ileostomy so there are less guts to be inflamed for me.

Once again, I started reading and researching and found this is not an uncommon issue for women.  Cysts, endometriosis, heavy bleeding and painful periods are very common for women with IBD.  So why do our doctors not work together and ask us these questions?

Why must we go from one to another and search for answers?  Why do specialists stand alone like they are on islands miles apart in the ocean rather than being linked together like the paper chain around Christmas trees?  Why do we call or go in and report a symptom, only to be told, "you will have to see another doctor for that."    And once you already have a chronic illness or condition, then the doctors get even more complicated.

I want simple!  I want easy!  I don't want anyone else to have to go from their GYN to another higher risk GYN only to find out that if surgery is necessary, another doctor will needed, another office, another wait, more forms, more history (yeah this electronic stuff is not that good).

I want the doctor's we need to be like a mall.  They just refer you right next door and you get in next week, your paperwork is already there.  No filling out all new forms.  No bouncing back to the first doctor, you just go on to next one you need until they get it right.  Maybe we could save some time and energy in our healing.

In September, I had a total hysterectomy.  Because I have an ileostomy, I had a complex pelvic/oncology gynocologist treat me.  It took from April, 2012 to September, 2013, five doctors and me telling the doctors that something was wrong, I was having pain.

I'm healed from the surgery and I would like to say that I am pain free.  However, I still have arthritis, I may have another IBD surgery in my future and it's insurance open enrollment.  That's causing me pain at the moment.

Frustrated.  That one word describes how I am feeling with doctors, insurance, pharma, hospitals, and even the big "foundations" that are supposed to help us all.  Do you feel it, too?  There are so many individuals that have worked hard in grassroots efforts to reduce the stigma associated with our diseases and conditions and yet the big people, the ones with the real power don't seem to be hearing.  How do we change it?