Gutting realizations

For those of us cursed & sick, we realize the distance of family & friends very quickly. Today I find someone who I helped in past years (before kids & marriage came into play-again) to the safety & detriment of my myself-including hundreds of dollars-that some people have the unique gift of 'growing up', having family, & getting the leisure of forgetting those along the way-kids, marriage, etc that people like me don't have. It's a smashing of heart realization that many, even family, leave you behind to protect their new family. I get it, but I don't. I didn't chose this-I'd give anything to be behind that white picket fence, but that's not in the cards for someone like me. So I suffer-through this move, weeks without drs or help, & face the pain alone, while others home life sleeps in peace & without chance. They slumber & dream while I lie awake, screaming to no one in particular in agonizing pain. What a difference 6 years makes.

 

Posted with Blogsy

Missing House

Yesterday I went to the neuro. After running the tests 3 times & my proteins being slightly elevated I have for now (again) been ruled out MS-wise. Of course we were thrilled, & after the dr gave me 2 shots in the sciatic nerve & pinched nerve. I was really hurting-I hadn't realized that for me/a fibro person, the spinal tap took a lot more out of me than I thought. Our cable went out, & sadly I missed the series finale of House. Look, I know his character was an ass, yet I grew to love him. Better or worse parts of how he acts reflects me sometimes. I guess having the world see how chronic pain can change you helps me cope somehow. I love & will miss how he, as well as my real doctors see me as a pattern & puzzle for good-not something to chuck out & refer endlessly to other drs to get me out of their offices. Being dismissed because you are too complicated is a special kind of rejection hell. This pic & poem (instant poetry gives you 35+ words & you make something with it) was taken tonight, after I slept about 19 hours. Enjoy & excuse the crazy. :)

 

The fear

Many of us live with fears. I grew up with fear twisting around my every muscle, thought, & mind as my brother going through cancer treatments, & later dying left me thinking fear was normal. I used to throw up nightly as my fears took over & my stomach felt it had to release this fear. I got better as I got older, but after getting sick, the thought of getting fired (they ended up letting me resign) or losing friends (count is at 3 significant friends) & losing myself in these illnesses caught right back up with me. I have horrific stress dreams, where I'm usually trying to find something that I never can find/finding my pets starving to death/being back at unusually cruel workplaces/& my family abandoning me. I wake up with this on my mind 29 out of 31 days on average a month. My fears now are moving, leaving my doctors, having to tell my doctors, not finding a good replacement (though I promised that there are no takers & we are supposed to move in 3-4 months), etc.

 

Groundhog day, the movie

 I have a friend who never really watched tv or movies, but LOVED the flick Groundhog Day. With Bill Murray in it you can hardly go wrong (God I love that man). Funny thing about my life...I live that movie-where everything is the same day after day after day after day after day-did I mention day after day? The only things that change are the number of my falls, which beloved pet dies, & the once a month awesome yet painful neuro doctor visit-awesome cos he is the only person physically close (as in I see him regularly) to me that really, truly, thoroughly gets fibromyalgia, the depression, the extreme sensitivity to lights, flares, & knows why & exactly where it hurts every single time. 

 

 

Now, evidently in a few months my day will change. I will move. I will grieve, yet again, about losing someone I love. But that's par for my course, as losing friends who can't understand why sitting & talking to them keeps me in bed for a few day, or why working 4 hours a week (which my friend said '4 hours a week is nothing!') truly is something impossible in my world, or friends who devastate me more by saying 'you can do it! You'll be fine' having no idea the cost. 

So happy groundhog day to my friend I miss so much I get physically sick to my stomach, who I will always link him & groundhog day, & to those of you whose days vary, I envy you in a sweet way. For you will never know what reliving the same day over again for 5 years does to a persons soul. 

 

Grief

 Right now I'm grieving, for things that are happening, & things that are to come, like losing the best 2 doctors I've ever had. & leaving my 2 pets & their graves. I haven't laughed in days, & I can't stop crying. But hey, these pics won some awards. 

 

 

 

The fallout

 

Pros & cons

Sometimes I have a day so bad the only way I can deal with it & go on is to admit & get out the crappy parts, then find some good, even if it's something tiny, to focus on...& forget the pricks of the world. 

Let's get the cons out of the way:

My TMJ jaw has tighten up, making it hard to eat, drink, talk, & the worst-causing a migraine type headache. I've been up with pain for over 24 hours. Even sleeping for short spurts was interrupted with pain & blinding lights/pain.

I did a favor for a person, & even when using what I gave made backhanded compliments...or really insults. Just rude, rude, rude. Not worth my time or worry. I'm such a sensitive person & take too much crap.

Seeing pics of me & family over the holidays today was bittersweet. The steroids in my monthly spinal shots leaves me so puffy & marshmallow looking. Hate. That. Necessary. Part. 

& the pros...

A great writing app, Knowtilus Pro on sale from &9.99 to 99 cents!

Finally getting one good comment on a notoriously tough photo group. 

Getting one pic of me & my nephew that I don't hate of myself ;)

ouch. the emotional kind

after a gift-a really special one-to a family member wasn't received or even wanted after I showed them-I showed them the photograph I had chosen (a few actually) to see what sizes, etc., I was told she didn't want them. After a week of this person letting it be known my presence here isn't really wanted-how my dad needed to choose between me and her-it just hurts. Being somewhere and knowing one party doesn't want you there is quite gut-wrenching.