Tuesday, April 12, 2016

And then there was 1

We bought a new couch a few weeks ago.  With 4 recliners, you know so both of my teenagers and my husband and I can all put our feet up at the same time.   It's a big deal to me.  I now have four different options of places to sit when I'm not feeling well.  When one spot gets uncomfortable, I can move to the bed or move to another recliner.  It's the little things.  When its just me, it's the little things.

It's taken about 6 years.  I've had my definite diagnosis of Fibromyalgia for 6 years, 3 years after my rheumatoid arthritis diagnosis.  It was as the fibromyalgia started to really effect my life and I started spending more time in bed that I realized I was hearing less from  everyone else.  Actually, it was when  I had to give things up that I realized no one was really around much anymore.

When people get "sick" or maybe they're having surgery, friends, family, church members show up with casseroles to drop off for their recovery and they're gone because they'll soon recover and all is well.  Their work is done.  Good deed accomplished.  In today's society the way we see our friends is we go out for "girls night" or we meet for coffee at Starbucks to catch up. So they need not stay to see they're friend and hold a conversation or subject themselves to their friend's sickness, recovery, or disability because surely they will be able to go out to a funner and swankier location to see what's going on with them.

But what if that friend doesn't get better?
Then what?

Your casserole has done been eaten.  Now what?

Pain is lonely.  There is no doubt about it.  People quit inviting you to go anywhere
because your attendance to cancellation ratio goes way up.  So then the invitations go

to zero.  And the visitation rate goes to.....zero.   Pain is lonely.

Most chronically ill people aren't flaky when they have to cancel so much.  They're just sick.  They just hurt.  Sometimes they'd just like a card in the snail mail that says you're thinking about them and that you love them.  If they're up to it, sitting in they're home instead of at Starbucks to have a cup of coffee as long as you don't mind a commoner's cup of coffee.  I can't make a skinny-cinnamon-dolce-fat-free-no-whip-latte, but I can make a cup of joe with some Italian Sweet Cream coffee Creamer with Pandora streaming on my smart TV.   As long as you're coming to see me and not my house.....you're welcome anytime.  As long as you understand this:

I'm just as sick in the first picture as the second picture....it just depends on how much the disease decides to rear it's ugly head.  I don't go out when I feel like the 2nd picture.  Because it's bad.  It's bad.  I don't even have words.

My circle of friends is small....because it has become that way.  People have walked away.  People have taken it upon themselves to decide I'm too high maintenance.  Or the worst one, that I'm faking it.  All I ask is that maybe my small circle believe me or take some time to educate themselves of the disabling effects of fibromyalgia and rhematoid arthritis.  Not only so they can support me, but so they can support my husband and boys.

Here are some great Resources on dealing with invisible illness.  http://www.butyoudontlooksick.com/

Sunday, November 1, 2015

The Next Chapter - How being sick made me realize how sick I am

After 37 years, I've had my fair share of stomach viruses.  And they suck, no doubt about it.  I don't care how old you are or how often you've had them, they're never nice.  However, this past week, I realized how having rheumatoid arthritis and fibromyalgia completely changes how I have to deal with preventing, treating, and recovering from what most people have the privilege of saying is "just a bug."

My stepson came back from his mom's house with a stomach virus.  He ran a low grade fever, got sick to his stomach numerous times, had dry heaves, slept all day, and was over it in about 12-18 hours.  I admit, I am a total momma bear.  I was up with him once or twice through the night and my husband got up the remainder of the night because I was exhausted and my pain levels were on the rise.  But then he was still running a fever when I was getting ready to leave for work, and I just can't imagine leaving either of my boys at home alone while they're sick.  So I spent the day at home, checking on him, and just being there.  So mistake #1 - I was around him way too much.

It may sound silly to say that I should have sequestered myself, but I indeed should have done so.  Rheumatoid arthritis is an autoimmune disease, which means my body is always fighting itself.  I take Enbrel to combat this disease, but it is an immunosuppressive drug as well, which means it makes my immune system weaker than it already is.  Some people compare it to be on chemotherapy.  So even the slightest exposure to a virus completely took over my system.  Radically.  My immune system was so suppressed that they believe my liver went into shock in an effort to fight the virus.  One of the reasons they kept me for observation was because my lab test were so freakishly out of whack.  However, nothing was ever found to cause the sudden elevation and as soon as my symptoms started to come under control, the labs began to normalize.

Moral of the story:  Having no immune system pretty much means you're sick all the time.  It's just a matter of what you're exposed to before you realize how sick you can actually get......and I got pretty sick.

It's pretty simple - Push to hydrate and keep trying to take my regular pain management meds, because the minute I lose control of my pain - it flares up and then I can't control anything.  I also have the privilege of having had a vertical sleeve gastrectomy, which means my stomach is about 80% smaller than the normal person's stomach and it's in the shape of a banana.  If I can't keep liquids down until they pass through to the bowel, then it will come back up and dehydration is eminent.  If I can take my meds and keep that down for the approximately a half an hour it would take for the liquid to pass, then I could stay ahead of the game.  Instead, I wasn't even keeping clear liquids down, which meant that the minute I took my medicine, it came back up and the fibro flare that has ensued has been unlike anything I have ever experienced.  And the abdominal pain from the virus itself doubled me over.  I couldn't control any pain.

Let me make this VERY clear.
The ER doctors and the hospitalist that admitted me did not care about any other pain than the abdominal pain and figuring out why my liver was so inflamed.  They were not there to treat my fibromyalgia pain.  They made that very clear.

Once my abdominal pain began to subside, I dropped my pain scale way back so that they would let me start taking my regular medicine so I could control my pain on my own.  It was very obvious that no one wanted to touch the idea of treating someone with fibromyalgia pain, so I didn't bring it up again after the first couple of encounters.  It's a very sad situation that doctors - regardless of specialty - can't or won't look at the patient as a whole and see how one thing is effecting other things.  Suffering is suffering and they definitely could have looked at my health records to see that I have not been to the hospital other than for an elective procedure and that I'm not someone who abuses my medication or treatment.  Instead, I was left to suffer some severe back, rib, gluteal, and leg pain, (in a hospital bed I might add, which is uncomfortable for regular people, let alone a chronic pain patient) until I could manage it myself.

Long story short - next time around, I'll treat this better on my own.  Forcing fluids, heat, rest, medication.  Don't get me wrong, the time may come once again that I'll need IV fluids, but after the pain I went through while IN the hospital, I'd rather go it alone.

This is the stage I am currently in.  Day 2 home from the hospital, I have been up and doing way more than I probably should have today. It's a constant battle for a lot of us Spoonies to stay put once we start to feel better.  I get some energy and I feel like I need to be grocery shopping, doing laundry, cleaning house, walking dogs, making dinner......you get the idea.  When in reality, I should maybe just walk the dogs and go back to resting.  Then maybe rotate some laundry and rest again.  Today, I put up my Seattle Seahawks Christmas tree, because I love Christmas and I've been watching Hallmark Christmas movies all day since they started running them 24 hours beginning this weekend.  It makes me happy.  I believe that having joyful things around you during recovery is very therapeutic.  Having my dogs....and twinkly lights make me happy and that's helpful.

In hindsight, it's been very emotionally taxing for me to realize that I am sicker than I used to be.  I'm an avid blog and article reader, so I know the danger of the autoimmune illness community when it comes to getting sick, but I guess I always thought I was different.  Like I was better than that and I would NEVER get THAT sick.  I was wrong, and I'm trying to come to grips with that.  I am sick.  I've known that for a long time, but this experience has taught me that I'm sicker than I realized.  Now it's just a matter of other people understanding it, too.

Tuesday, November 6, 2012

Defeated by Grocery Shopping

"Some people meet people in the grocery store, but I get my tomatoes and I'm out." ~Ryan Seacrest

Grocery shopping has always been the one thing I felt I could still manage on my own.  I was still capable of bending to the lower shelves and reaching to the higher shelves.  I could even manage to position the cart just right so that the dog food would fall almost exactly where I needed it to into the cart.  During flares, I would take one of my kids or my husband to do any extra running back for forgotten things or to do the heavy lifting.  But, I was still managing it.

All of that has now changed.

I can't handle the grocery shopping.

Thanks to Hurricane Sandy and an upper respiratory infection, I am currently coming down off of a shoulder, rib cage, hips, and back flare....rheumatoid arthritis and fibromyalgia respectively.  However, life must go on for my family, which by the weekend includes my son going to his dad's house, my husband going to his dad's house (who is very ill....we go to relieve Chris' sister who is there 24/7) and taking along my other son/stepson because he needs to spend some time at PawPaw's house.  On Saturday, I had been down and out for 2 full days and thought I needed some fresh air and sunlight.  What better reason to get out of the house than to go to the grocery, right?  Go out with a purpose.

Grabbing the cart to have something to lean on, I began to meander through the store.  I didn't have a list, which is unusual for me, but looking back that should have been an indicator that I wasn't feeling up to this.  Normally I'm on a mission, but today due to the lack of list, I instead took to wandering through each aisle to see what we needed.  We have the mainstay items.  This week we were in need of snacks.  Two pre-teen boys require a lot of snacks....some healthy, some not. And I digress......

By the time I reached the toilet paper aisle, I couldn't lift it.  Think about that for a minute....I couldn't lift a package of toilet paper.... At this point, I had come to the conclusion that I couldn't really lift anything above waist level or anything large and awkward that may be below waist level.  When I tried, every muscle and joint from the waist up locked up and I was gripped with pain.  And I still had to get milk, dog food, some 2 liters of soda....heavy things for me.  And extremely painful things for me.

When I tried to lift the milk into my cart, I felt like I was going to fall to my knees.  You know, that scene where  milk spills everywhere and I just lay there waiting for the pain to pass.  Now, that didn't really happen, but I could see it happening in my head.  It took me a good 3 attempts to get a gallon of  milk into my cart.  And then I needed to get another gallon.  Oy vey.

 So, 2 hours later, a lot of  heavy breathing, crying, sweating....I make it to the check out counter.  At this point, I could care less that I'm over budget and I could care less how many fuel points I'm going to get out of this trip.  What I do care about is the bag boy.  The one who it seems I've interrupted his doing nothing to load a bag of dog food into my van.  And as we stand in the cold damp parking lot, with the back of my van opened, sitting in a handicapped spot.  He throws the bag of dog food in the van, looks at me and says, "Is that it?"


And if I had the energy I'd smack you in the back of the head for asking.
You're already here with me....obviously struggling....just help me load some groceries into my car.

If my children act that way.  I will punch them.  In the face.

Wednesday, August 29, 2012


(*adapted from the award winning musical "The Sound of Music)
"Let's start at the very beginning,
A very good place to start.
When you read you begin with
When you eat you begin with

The first three things I'll avoid to eat are
Red Meat

So, after the past couple of weeks I've had and especially the last 7 days in particular, I decided that it was times to start at the very beginning.  Per my lovely PA I am definitely having a hard time making the transition from Humira, which seems to be out of my system (really?! No shit!!) to the Enbrel that may take 4-6 weeks for me to really feel anything.  However, there's this flare up of fibromyalgia that seems to have come out of no where which makes it almost impossible to sleep deeply.  I sleep 2 hours at a time. Not to mention they gave me a steroid shot, which may mean that I won't get ANY sleep tonight.....just a typing maniac.

Any-who....that's where I'm backpedaling....where it comes to my fibro,  Ideally, I should be off of all pastas, potatoes, starch, carbs, etc and amping  up my proteins, fruits and veggies.  I was doing really well on this plan until I got fatty liver disease diagnosed and was told to cut back on the proteins in order to help manage my liver.  So, I am going to slowing ween myself back into this no carb high protein world.  I'm starting with dough as in all of them (pie, pizza, cookie, cake, bread.....anything that begins with a dough to make.)  Also giving up red meat, which really isn't that hard for me, unless you count like ballpark hotdogs.  Yumm-o.  Caffeine....this is a biggie.  No coffee, no tea, no Pepsi.....I guess that means more water.  I just have to make the change.

Also included is using things that I know are just naturally helpful.  Fresh tuna and Fresh salmon, turmeric, sweet potatoes...all have anti inflammatory properties that could really be used to my benefit as well as green tea. (sllluurrrrrrrppppp!!!!!  Ahhhh!!!!)

If you don't know where thinks went wrong then, well.....

Let's start from the very beginning. 

A very good place to start.

I'm on pain medication  that makes me say  things I'd never say otherwise.

Tuesday, November 8, 2011

A Tuesday Tantrum - The Many Faces of Screaming

"LORD my God, I called to you for help, and you healed me" ~Psalm 30:2 (NIV)

In the past 4 days I have felt like screaming....

The screaming pain......

Screaming because the pain is so intense and nothing is helping it go away.  Not heat, not cold, not narcotics, not rubs, not creams....nothing.  I feel like the only thing left to do is scream.  Or is it the annoyance that I don't even know why my joints have flared up this time? Sure the weather is up and down, and my stress level is high, but nothing out of the ordinary.  Why do I hurt?!

The scream of frustration.....
You kow those days when you can't do anything for yourself?  Kind of like when you can't lift the milk out the refrigerator, or open the jar of spaghetti sauce to fix your family dinner. But the many faces of frustration could be a whole different post when you look at all the areas that chronic pain touches. The scream of frustration happens more than it should and a lot of times leaves me feeling like I'm somewhat out of control.

The scream of forced surrender (a.k.a. a pity party)......

You've been there.  Don't deny it.  It's the "I-can't-take-living-like-this-any-more" kind of scream.  Maybe more likely referred to as a cry, a wail, a sob.   It's the end of your rope pity party that anyone who deals daily with pain will eventually get to.  There is very little that will help  this emotional scream.  I would recommend chocolate, hugs, Hallmark made for T.V. movies, puppies, and depending on your tastes maybe a glass of wine.  I promise your mood will pass and you'll get your groove back, but it's okay to have these days.  Don't dwell there, though.

The scream of ANGER.......

I'll admit, I want to scream a lot in anger.  Anger at the disease, anger at the life changes I've had to make, but most of all......if there is one thing that REALLY makes me angry enough to scream it's ignorance.

(*I will make the disclaimer that I am not perfect and at times I say things that I shouldn't, but with God's grace, I am forgiven and continue to make every effort to look at all perspectives of a situation before opening my all too human mouth.)

I have very few people in my life that "get it". But that being said, even the ones that get it for the most part, have had moments where they judge my current situation or if I'm REALLY sick.  I understand that it's difficult when I don't look sick.  However, these people know me and choose to suppress the judgement in order to support me because they know my character.

My difficulty comes into play when I get the scowls from people because I'm parked in a handicapped spot at the grocery, or the whispering of co-workers because they can see an arthritis patch stuck to my back and peeking out from the collar of my shirt. If you don't know me, or have chosen NOT to get to know me, then you have no right to make the decision of how sick I am.  You will never be able to see the level of pain, and I can guarantee you that every day I'm in pain.  I make the choice to mask it and to try to be normal.  Perhaps others should be judging me based on my strength to keep pushing instead of judging me on the days that I can't keep going.
I can only do so much to help educate my friends and family about RA and the effects it has on daily living.  Do me a favor.....if you know someone dealing with chronic pain, find out why and care enough to do some research.  I love But You Don't Look Sick that uses the "spoon theory" to help explain to friends and family and I also like The 60-second guide to RA from Rheumatoid Arthritis Guyas a fun way to discuss RA with my family.

  • How do you talk to friends and family about your disease?
  • Or do you not discuss it at all because it makes you want to SCREAM so much?

Monday, October 10, 2011

Fun Food Review - Pumpkin Pie Pop Tarts

Okay....I'll admit it.....I'm a Pop Tart JUNKIE!! I have been closeted about my addiction for years, but when my mom showed up at my house this past weekend with this "limited edition" box of Pumpkin Pie Pop Tarts, I decided I needed to break my silence. But let me just tell you...there is a very good reason why they don't make these all the time. America would be even more morbidly obese than they are today. Everyone who loves Pumpkin Pie would be in heaven to be able to get it in such a convenient package and in only 5 minutes from the toaster.

I am a firm "toasted" Pop Tart eater...not microwaved or raw...toasted. So when I pulled these little babies out of the package and popped part of the crumbled crust in my mouth, I was not impressed. Just regular old Pop Tart crust. Bummer. My skepticism was mounting at what seemed to be an ideal breakfast treat.

Then, I discovered the filling and oh, what a joy. A burst of Thanksgiving joy dancing around my taste buds. All the cinnamon, clove, ginger, nutmeg pumpkin pie spicey goodness and sprinkles to boot. Sprinkles make everything good. I know I can't be the only one who believes in the power of sprinkles.

Final thought: Get a box. Get two or three. You may not be able to find them again for a long time, if ever. And you'll want them. Oh yes...you will want them, again.

Wednesday, October 5, 2011

Wordless Wednesday - Here kitty, kitty.......

It's been a constant struggle climbling up hills and falling down valleys the past month or so for me. So, some days you just have to channel your inner queen of the jungle, ya know?