I’m...so...FRUSTRATED!

In home therapy ended last week, it’ll be about a week before outpatient therapy can start so I went to the gym! I can be found on my bed for the next eleventy hundred hours.

I truly didn’t do anything that would be considered overdoing it. I only did 5 minutes on the bike, then went through the home routine she left me, plus a few arm workouts with lowest weight dumbbell.

Driving back home was incredibly difficult and it’s less than a mile drive. This was my concern being discharged from in home therapy. When doing inpatient and in home therapies, if we pushed it was ok, I could get right into bed. (as opposed to in/out/in/out of the car, driving, walking from car, etc.

I’ve been in bed since getting home 2 hours ago. Pain med taken, maybe took the edge off but barely. I’m frustrated that such a small workout took me down like this. I’m frustrated with how very many times I’ve had to “start over”. I’m just frustrated! Yes I know  it’ll get better, I know I’ll continue to build strength and endurance but right now, in this moment, I’m angry and yes, frustrated.

This is my reality, and the reality for my family who sees this up close and personal day after day. All my smiles and insistence that “I’m fine” fall on deaf ears as far as they’re concerned because they SEE the things I think I’m hiding.

I won’t give up, no worries. Sometimes I just want to SCREAM in rage at this stupid disease and the never ending cycle of flare, recover, repeat. I want things to change but all the wanting and working hard just doesn’t matter when dealing with a chronic illness like Myositis. I know that continuing to want more for myself will at least always help mentally I’m just tired today of the physical failings of my body.

To Accept or Not to Accept...

I was going to start this by saying “Last night I had a burst of energy as I was doing my basic night kitchen work, ie loading the dishwasher and washing the non-dishwasher dishes and shining the sink,” but as is seemingly always the case when I try to describe attributes/sensations of these diseases of mine, energy isn’t the quite right word. So:

Take Two!

Last night as I finished doing the dishwasher, I set my hand on the counter to steady myself from yet another imbalance of the jelly legs and, when it felt like I lost a layer of skin peeling my hand from the invisible sticky mess that was there left by “”I didn’t do it” or “it wasn’t me,” I had the desire to really clean the counters and stove top. Every now and then I can convert the desire into accomplishing something more physical. Whether it was some slight improvement or the Starbucks 2x caffeine coffee I had earlier or a combination I got it done and it felt good.

I went to put clean towels into the NO MOM LAND, aka the boys’ bathroom (go ahead laugh, true but funny but I have to say lately they really are doing better in there, good boys haha) and saw that apparently a car mechanic had washed hands or something in the sink. And counter. And backsplash. And all the way to the top of the toilet tank. . Oh—and no car mechanic was in the house so I don’t know what it was and don’t want to...but I digress. With the mind over matter action still happening I cleaned up in there as well.

That’s it. That’s all the real extra I did! Wait not true, I did go to the store to pick up a prescription and a couple items and didn’t use a Beep-Beep (my fancy word for the motorized scooters), I walked because I felt ok enough to just walk!

Those were my extras for yesterday. I woke up around 4am to spasms in my left hip flexor shooting through the leg, making my leg stiff and in agony; I didn’t want to take anything and didn’t want to really move so I turned up the temp on my heated blanket, did some deep breathing and fell back asleep.

My alarm went off at 5:45, left hip and leg still hurting but what-are-ya-gonna-do, time to get up. I opened my eyes, turned my head and was met with that achy head pain that has become an immediate red flag that a flare may be coming. I went to turn off my alarm and my arm felt like the mysterious mechanic who infiltrated the bathroom must have tied bricks to it, and the other arm. Red flag alert two. I got out of bed, started to walk and upon finding that jelly legs had also been weighted down, I angrily recognized red flag alert three.

I couldn’t find the humor after that. I’m just going to say it, and I don’t like to say it “out loud” but I’m going to anyway:

IT’S NOT FAIR!

I quietly mumbled an angry storm of cursing while still in my room, took some breaths and hobbled my way to the kitchen and coffee, thankful I cleaned the sticky mess on the counter last as my legs started to give out I almost the same spot as last night, but worse and I threw my both hands onto said counter and stove top to keep from falling.

I’m not sad, I’m just so angry! I like angry better than sad so there’s a positive I suppose. I feel that anger is more of a concrete emotion that I can “put a finger on,” feel it, find a healthy way to express it and get it out!

I don’t think I’m headed into a full on flare, no nausea and the head pain has subsided a bit. I’ll take it easy today, I’ll take the advice I’d compassionately give anyone else to rest and recoup but I won’t take it eagerly.

I don’t know how to accept the terms and conditions of the diseases I have; I don't want to accept them! I do realize however that I have to at least acknowledge the limits and allow for recovery, like it or not, and for this morning writing about it was what I felt needed to be done. And yeah yeah, I’ll mostly be sitting yarn-arting or sleeping today, self care and all that rubbish, no worries, no lectures needed, I promise.

I Hate Roller Coasters

When your mommy brings you Reese's Stuffed with Pieces, the day gets a little brighter. At the same time, I hate that my parents have to come visit/help me. Okay, I don’t hate them coming here, I hate the idea and the why of it. They shouldn’t have to be worrying about me at this point in their lives, at least not in this way!

This stupid health roller coaster I and so many of us are on is just the stupidest of stupid rides, one that I not only can't get off but am stuck in that damn front seat! It keeps revealing new twists and loops hidden on initial observation of the roller coaster, and each new path on the track brings increased and almost suffocating speeds; finally, finally the ride starts slowing down, even coming to a stop--only to launch backwards. Those closest to us are forced on, locked in and zoomed onto the rickety tracks. Some stay, white knuckled and terrified into silence. Some scream in terror with eyes squeezed closed so as not to see what’s coming next or how anyone else is being affected. Some sit next to me holding my hand, while others sit next to me laughing hysterically to the point of near peeing pants at and with me in the face of the fact that at any moment the entire ride might crash down! Others use the eject button;  it’s an escape equipped with a silencer so you never hear them leave.

Yes I got all this from a pack of Reese’s with Pieces lol.

Zero Tolerance for Gluten!

Please understand if I don't eat something when I'm visiting with you it isn't meant as an insult. I can't go ahead and try something just because it doesn't have any obvious gluten ingredients, or even if it says gluten free but ends up surrounded by/prepared with foods containing gluten. Please please please understand I have Celiac Disease (CD), I will have it the rest of my life, and yes even a tiny bit will make me sick. 

You might be thinking, "so you'll have a tummy ache or some gas or diarrhea, we all have that from time to time." Please try to understand that for me, and the many others with Celiac Disease, ingesting even the tiniest bit of gluten begins a war inside my body, sending signals of attack to the critical villi inside the intestines. Often gluten intake, for me, results in fiery pain throughout my entire body--every joint, every muscle, every inch of my body from head to toe, inside and out. Sometimes the attack takes place in my nervous system, triggering anything from panic attacks to exhaustion to a general "brain fog". This is why CD is considered an autoimmune disorder. A basic autoimmune disorder definition from NIH.gov:

...problems with your immune system cause it to mistake your body’s own healthy cells as invaders and then repeatedly attacks them. This is called an autoimmune disease. (“Autoimmune” means immunity against the self.) 

Celiac Disease can make me feel like a hypochondriac; the main reason I might feel that way is because society just can't seem to accept that Celiac Disease is real. The masses of people going to restaurants asking for gluten free foods and adding "can you just bring me one roll instead of the whole basket, because I'm limiting the amount of gluten in my diet" are just that, they are on a diet. Unfortunately with so many people doing this, too many take that as the attitude in general of anyone that says they can't have gluten. While yes, I've made the choice to eliminate gluten from what I eat I must eliminate gluten entirely from my what I eat to regain and maintain my health. 

If you have questions, ASK ME! I'm learning as I go because it just isn't as simple as "no wheat". One of my favorite bloggers Gluten Dude has this entry that helps to express some of the frustration when given the CD diagnosis Here's a short excerpt: 

...Who cares if this 21 year old has joint pain? It’s just inflammation, take it easy, take some more pills, and it will go away. I got labelled a hypochondriac. I was making it up.
Then, about 3 months ago, it was as if my body just gave up. I had no energy to do anything. I was anxious all the time, and I was hospitalized for severe inflammation in my chest that had me on bed rest for 2 weeks. Then I started getting ‘actually’ sick. In a way that counts, I guess. Up at 3 am, going to the bathroom every 20 minutes. Getting incredibly nauseous after eating. I lost a lot of weight in a very short time period. ... I was told I have Celiac. That I can’t have gluten. That I probably inherited it. [Read the entire entry HERE]

Here's a pinterest graphic that caught my attention this morning. Remember, if you have questions just ask. To get to the original graphic, click HERE and/or to read the original Gluten Dude entry that inspired the graphic, click Gluten Dude: Here is Why I Eat Gluten Free

Celiac Disease is FAD-free!

"Whether your choice to live gluten free is driven by the desire to lose weight, comply with a celiac diet, the need to avoid wheat because of mild allergies or the suspected link between gluten and autism,"

This part of a gluten free cookbook description irked me...why? Because the fad dieters (who give those with a medical reason to be gf a bad name) are listed first. 

I get it, it's all about the almighty dollar, which would explain why gf products are so expensive; all these people jumping on the gluten free bandwagon are willing to pay to play, while those of us with no other health choice can't afford it. Yes, it is a double edged sword on that products are more readily available, but at what price-both literally and figuratively to the quality of the food and the dismissal of those diagnosed with celiac disease as using the latest diet-du-jour. 

Gluten Free and...BLAH

Once I post this, I'll brace myself for the backlash of naysayers and know-it-alls. I am two weeks gluten free and I feel..................NOT SO GREAT. I got my positive antibodies celiac panel results on October 29.

What is wrong with me? Article after testimonial after face-to-face after interview says, "you will feel amazing within a few day of being gluten free." I waited. I stuck with it. I ate fresh vegetables each day, made my own bread, and pizza dough, and even delicious chocolate chip cookies. I switched from my regular Cheerios to Chex. Not only do I not feel better, I feel worse, with a steady weight gain and feeling an overall sense of dragginess. I'm swollen more and my aches have increased, and I am not sleeping well, I'm foggy and emotional. I have not had one AHA moment. I just feel worse.

I'm frustrated and angry. People assume I'm just still eating junk food because I joke about it so much and because, well, I tend to be a snacker. (I can hear some people laughing right now at the minimization of that statement--oh, shut up!) I am screaming from the rooftops here, I HAVE BEEN EATING HEALTHY FOODS and NO gluten, save for 1 lone flour tortilla and a bowl of Cheerios about a week ago. This was supposed to be the Hallelujah choir awakening of my hidden, feeling better, self. I never expected to feel worse.

From all the reading I have been doing, and knowing my own body, I think it is safe to assume there are other foods I am reacting to. I know I have always had problems with corn and am just realizing there is some sort of corn (flour, meal, starch) in many things I've been eating recently. Sure, I could try to eliminate that as well; unfortunately I think there are others.  With 2 kids still in the house that are not gluten free, I don't see how I could practically track it all down. I'm not meaning to sound like a martyr (although isn't that my role as a mom??), I just don't feel that I can do this on my own, and continue to feel worse and wait up to 6 months to start feeling better.

I will continue to research and hope to find answers. I see a rheumatologist next month and hopefully that will narrow the possibilities into what is going on inside my body. Hey, I know what I need: OSMOSIS JONES! MAGIC SCHOOLBUS!! Hey Miss Frizzle, figure this out for me!

I am taking this seriously, trust me I want to feel better. I just don't see how this particular path is going to "work" right now.