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?

Pinterest?

Do you like Pinterest?  I like looking at everything but it is probably my least favorite form of social media.  I started a Pinterest account because of things I wanted to save for later but then I forget about it and forget to "pin" things.  The Wego Health Writers Challenge for today is to create a Pinterest Board with a health focus.  So, I did.  It was actually fun to find related items that might create awareness and educate others.  I just haven't figured out how you get everything to line up like I want.  If you have any tips on moving the "pins" around and lining things up, please enlighten me.  Anyway, here's my Pinterest Board.

http://pinterest.com/angsgotmoxie/health-awareness-learning/

Technology

Ah, technology . . . where would I be without you?  Confused, scared, feeling alone and probably in more pain is where I suspect I would be without technology.  Social media and Dr. Google both get a bad rap for many things these days but for learning about and connecting with others with chronic illness, they really are amazing tools.

In the first days of my illness, I had no idea how to cope or what might happen to me.  Just one symptom, vertigo, left me feeling completely isolated.  I found a group for people with vertigo and suddenly I was no longer alone.  The tests were no longer overwhelming or scary.  Someone else had already been there before me and had lived.  Imagine that! 

Next I received the psoriatic arthritis diagnosis.  There were so many well meaning people around me who said things like, “you are too young for that,” or “oh, I’m sorry, my family member had that and had to be in a wheelchair or couldn’t use their hands.”   Isn’t that is exactly the kind of thing you want to hear when you have just been diagnosed with a chronic illness.   And the dozens and dozens of cures people me told to try, well I could probably write a book just about those alone.  I might have gone crazy.

Reputable websites helped me sort out those things.  Oh sure, there are snake oil salesman on the internet.  Like the commercial says with tongue in cheek, “they can’t put anything on the internet that isn’t true.”   I keep that in mind and stay away from websites that can be verified.  Reputable and verifiable means having a physical building or magazine or network of doctors and people.  Maybe other reputable sites that link back to it and use the information or other networks that refer you to the site.  If you have heard of the website outside of the internet, then it might be a good one.

Good websites also provide many tools.  Medication trackers, allergy trackers and information, medication guides and interactions, pain trackers and guides besides care guides for your condition or illness.  They go beyond the standard description of an illness and point you to recipes, coping and connecting with other people like you.

Then we have the simple connecting with others.   I can’t even imagine how different my life would have been had I not reached out through the web.   I think I would have spent so much more time feeling isolated and very depressed.   I made read real connections with real people through groups, message boards and now all kinds of social media.  Those connections were more valuable to me than the nurse in my doctor’s office on a daily basis.   I have made real friends.

I have a portable TENS unit that I wear to help with pain.   All my ostomy supplies are neatly listed online and I can view my previous orders, see new items and get reminders for my next order.  I have applications on my smart phone for exercises, notes, health information and medications.  We have blood pressure and blood sugar monitors.  I have used biologic medications that I injected myself that came in one-time use pre-loaded syringes, no mixing, and no drawing up necessary.  We have so much new technology exploding it’s truly incredible.  I’m always amazed with what is happening next and yet at the same time disappointed that with all the advancement there hasn’t been more progress for autoimmune diseases and chronic pain.   Researchers and biomedical engineers, please keep at it.

Click here to see a list of Links and Resources for IBD,Ostomies, Celiac Disease, Arthritis, Chronic Pain.

Being Average and Inspiring

You know what one of the greatest things in the world is to be?  Normal.  To just be an average person living an average life, doing the average things every day is one of the greatest things in the world.  Things like getting up every day and getting dressed all by yourself, going to a job or career of your choosing, feeding yourself whatever you like, watching or playing in a ballgame, maybe coaching your kids, maybe just playing in the yard with them, cutting the grass, walking the dog, doing the dishes and yes, even cleaning the house.  There is great joy in living an average, normal life.

It doesn’t sound very exciting to aspire to be average, does it?   Doing normal things doesn’t sound very inspiring, either.  There have been times when I truly could not cook for my family and they had to carry me Gatorade or help me around.  Being able to cook a good meal is the most awesome feeling in the world.  And, family to help out without complaining when I’m not quite up to it myself is also inspiring.

Every day that I can be average, normal, is truly a gift.  It’s a new inspiration. Another opportunity to work, play and choose happiness.  And if I can do that in spite of having more than one chronic illness and an ileostomy then can’t everyone?  Each day doesn’t turn out like I plan but each day, I try.

For so many people, it is only when they can’t do these normal, average things that they realize just how great that life is really.    This is fuel for me.  I want to wake people up not only to arthritis, IBD, Celiac Disease and living with an ostomy but also to just how great living a normal, average life really is and what that means.  I want everyone to appreciate those days while they are living them not when they are looking back on them.   If people living normal, average lives can appreciate their own, then maybe they will cheer for me when I have a normal day.   And maybe they will be more understanding when I am not having an average day and need a little extra help. 

Adversity

“The flower that blooms in adversity is the rarest and most beautiful of all.” – Mulan

If only that were completely true.  Have you ever taken a good look at some of the flowers considered most rare?  While beauty is subjective, I don’t find some of them to be beautiful at all.  In fact, some of them are downright ugly to me.  Others are quite delightful to look upon and marvel.

Another quote about adversity reads, “The fire of adversity will melt you like butter or temper you like steel.  The choice is yours.”  That seems a little harsh, doesn’t it?  That we must become like steel when dealing with adversity in our lives. 

Living with and being a survivor of any chronic illness is overcoming adversity, day after day.  Does it make each of us beautiful or temper us or melt us in the same way?    Does it even make one of us beautiful, hard like steel or melt us like butter all the time?  I don’t think so.    There are too many hills and valleys with chronic illness.  We must face each day with new purpose, new resolve and new determination to fight to be well.  Some days are really good and we are really beautiful.  Some days we can’t help but melt like butter.  Each day we need some temper, like steel, but not so much that we are hard-hearted and cold to the world around us.

One of my favorite quotes reads, “I am strong because I am weak.  I’m beautiful because I know my flaws.  I am fearless because I have been afraid.   And, I am happy because I have known true sadness.”

Each of those things applies to my life with chronic illness.  And each of the positive is a choice I make over and over again.  We each choose how adversity will affect us and whether we bloom or not.  I bloom best when I choose strength, courage and happiness.

Vintage Picture

My mother and I in 2005 both thinking we were too chubby, before she needed a colon resection due to cancer and I had ended up underweight, malnourished and having a colectomy due to ulcerative colitis.  Now I think we both look beautiful with healthy hair and great smiles!  I no longer see weight, only health as important.

A Professional Patient?

I have on staff, a general medical doctor with nurse practitioner, a rheumatologist, one gastroenterologist, one colorectal surgeon, a neurologist, an ENT/allergist, two gynecologists (I’m complicated since I have an ileostomy) and a host of nurses and lab technicians who assist those people.  You know what?  I was not meant to be a professional patient!   I am the care giver.

I was supposed to go to the doctor, get fixed, and go home.  Isn’t that the way it works?  You get a prescription for 7 to 10 days and by day 3 or 4 you are better and wondering why you need to take the rest of those pills.  There are many, many people with a chronic condition, illness or pain so I know there are a lot of you that can identify with that not working.  So, I accepted it when that wasn’t going to work for me and decided to just get on with it.  What’s next?   When I had one doctor, one diagnosis, one treatment plan, I could go in, get all the information, ask all my questions and come out knowing what I needed to do.   But when you have one auto-immune illness you are more likely to be diagnosed with another, like an arthritis and IBD in my case.  Multiple doctors, multiple diagnoses, multiple treatments and medications can get confusing.  You can begin to feel like you are the professional, like being a patient is your job.

That is not supposed to be me!  I’m the caregiver.  I don’t say this out of indignation.  (Well, okay, maybe there is some indignation there.)  This is actually what happens to me when I am in the office in a chair or on the examining table.  Doctor, “how are you?”  Me, “I’m fine.”  What?  Did I just say that?  Doctor, “how’s your pain?”  Me, “okay, I can stand it.”  Again, did that just come out of my mouth?  I’ve been doubled over!  Doctor, “do you need any refills?”  Me, “I’m not sure, I don’t think so.”  In my head, how could you not be sure?

A visit to the doctor with any member of my family, or any friend is completely different.  I am the greatest health advocate they have.  I will remember everything they need, have a list of symptoms, a list of question, jot down what needs to be remembered, ask about the medications and side effects, you name it.  I have had people ask me to go with them a second time after I have gone with them.  I had a doctor ask for me by name to get a health history for a family member in crisis because they knew I would have all the information.

So, what happens when we ourselves get in that chair or on that table that turns our brains into jelly?  I’m not intimidated by doctors so that can’t be the problem.  In fact, I am very comfortable with mine.  Is it just the fact that the whole experience is overwhelming and intimidating?  I find that all the things I tell other people to do so they have a good visit with the doctor, I do not do for myself.  I just go.  I don’t prepare.  If I am going with a family member or friend, I prepare.  Every time I leave the office, I say next time I’ll be prepared.  And next time, I’m not.

I think I need a friend like me who needs an advocate but can advocate for me.  If you are in the same place, find someone to go with you.  Or hey, give me call, maybe we can trade appointments.   At the least, get yourself a notebook.  Write down all your medications and all your allergies.  You can jot down your questions as you think of them so you will have them in the doctor’s office.   And you can make notes before you leave the office of things you need to remember to do.  Really, I should take my own advice.  But if I do, will I be a professional patient instead of caregiver?  Is that why I don’t?

Happy Birthday or Anniversary . . to Me!

It's been a year now since I had my colectomy, a whole year.  On March 5th of last year, I had an appointment at the hospital to get registered, have labs, do all the paperwork, talk to 5,000 people and be completely inspected and meet with a new friend, my stoma nurse.  She looked at my belly while I was sitting, standing, leaning, bending and every way possible and drew possible site for my stoma.  I was exhausted when I left the hospital.

Even though eating was causing me great pain, and I'd been having diarrhea for months after just a scrambled egg, I'd still had to take laxatives for a couple days in the evening before this appointment.  I was terrified that I would need to run for a bathroom.  I can't remember exactly what I had eaten the night before but I think it was a pudding cup.  Pudding cups and cottage cheese that I had been putting in the blender were about all I had been eating besides the eggs for about a month.  When I left the appointment, I had some tea.  Liquids only for that day.

I also discovered one of the biggest lies in the world that day.  Liquid magnesium citrate with a label that says "pleasing lemony flavor".  Biggest lie ever!  You see, my diarrhea, not eating and laxatives were not enough.  I was having my colon removed.  We had to be absolutely sure there was nothing left in it.  Lemony magnesium citrate first makes your mouth pucker until cheeks hit your teeth, then your eyes start to water and then it begins to take the hide off of your tongue.  It has enough malic acid to peel paint or clean toilet bowls.  Thankfully, I had some agava syrup in my cabinet and since it was a clear liquid and I doctored my pleasing lemony flavored magnesium citrate until was actually palatable.  Between trying to swallow it all and running to the bathroom I think I was up all night long.  I didn't care.  I was so anxious for March 5th to be over and March 6th to arrive.  Finally it did.

I should have been nervous.  I should have been scared.  This was a big operation.  The nurse told me a sedative had been ordered for me if I needed it before going in to surgery.  She saw me smiling and said that I didn't need it.  My family might have needed it.  All I could think of was that I was so ready to take this step and get healthy again.  When you see me smiling in the pre-op picture, except for being so thin, you probably wouldn't know how sick I really was because I was so relaxed and finally feeling hopefully.  And wow, was I sick.  In those first few days after surgery, it really showed.  I couldn't hide how thin I was in a hospital gown.  The surgeon told my family how malnourished and dehydrated I'd really been.  My veins were blowing and it took a while for my small intestine to start working again.  But I kept pushing.  I got up the day of surgery and I have another picture that same day.

And now, it's a year.  Some days, it's seem like yesterday.  Some days, it seems like forever.  I can eat!  I've gained weight.  There are times I completely forget that I even have a stoma and bag.  There are days that it's all I think about.  I will never be the same but who is ever the same as they were a year ago?  I am healthier.  I am more "normal" now than I was a year ago.  So Happy Birthday Moxie.  I'm glad that I have you.

Ostomy Awareness

Hey y'all!  It's been a little while.  I over-extended in December (don't many of us) and have been fighting sickness since the week after Christmas.  During that time, I've thought of so many things I should be writing about.  Yesterday, this just starting flowing out.  Hope it touches some of you.

My ostomy saved my life.  Since I have no colon, I imagine I will have it for the rest of my life.  It has also drastically changed my life.  I have to think, now, about what and when I am going to eat.  If I am going out, will I be able to able to empty the bag?  Will I be in a situation where the stoma might make noise?  While my diet was in no way normal before, it is not now and will never be again.  For the rest of my life, I will have to be concerned about hydration.  I have to think about when and how much I eat before bed or I may be up all night or have leaks.  Thinking about clothing is completely different.  Not because of vanity or being concerned if the ostomy bag shows, although that is part of it but because you simply can’t have waistbands on your stoma.  Don’t get me wrong, I wouldn’t go back to how I was living before my ileostomy for anything in the world. 

It also breaks my heart to know that children have to learn to deal with all of these things.  I want them to be teens and sleep 10 or 12 hours without having to worry about emptying a bag.  I want them to eat all the popcorn, peanuts and candy they want at a movie or ballgame without worrying about a blockage or hunting the nearest restroom.  I don’t want them to have to carry a bag of supplies with them everywhere like a diaper bag.  I don’t want them to have to run to the teacher or nurse at school because they have had a leak nor have other kids laugh.

I want awareness and people to know that having a bag is not a “bad” thing.  That having an ostomy is nothing to be ashamed of or hidden.  I also want them to know the drawbacks and how it really affects us, especially children, so they will be more understanding in all those situations when we need them to be.  Those times when we need to use the handicapped bathroom.  The times when we really do need to pick a different restaurant so we can find something we can eat without having to choose the same old plain grilled chicken breast, no sides, once again.  So they will help me be discreet, if I am ever out in public and need to hurry to make a change because of a leak instead of looking on in horror.

I want better medications before ever reaching the point of needing the stoma.  Medications that don’t have awful side effects along with them like hair loss, severe fatigue, nausea, vomiting, mood swings, weight gain and loss and increased risk of cancer.

I want tests that do not rob you of any dignity you ever had and leave you feeling violated.  Tests that don’t cause you further pain and humiliation and leave you feeling sicker for days.

Most of all, I want a cure.