Day 1-why I write/social media

Welcome to day one of the National Health Blog Post Month! NHBPM from WEGO Health will have bloggers posting 30 for 30-a blog a day for November, using prompts to guide them. Today the choices are: why I write about my health, or what I like about social media/the Internet/online health communities. I actually am going to combine these today-as my yesterday/Halloween is a perfect fit.

My pain tends to be worse at night, so my day usually is late afternoon through early morning. I sleep when most people are working & am up all night. I started blogging-usually after midnight...after seeing how a soldier with PTSD was told that blogging & talking about his life could help. The show was the PBS show Sherlock, the soldier Dr. Watson. It seemed to help him & so I started doing a picture a day/blog. I use photography as a coping mechanism, & so doing a picture a day blog seemed like a good fit. Example? Tuesday night. Mom & dad had gone to see my 2 nephews & babysat while my brother & his wife were out. It really depressed me that I was stuck at home, not going to a great costume party, or seeing my adorable nephews, & not out buying candy & decorating my front door for kids. It was a normal night inside, as usual. Mom brought home 2 cute sugar cookies, & determined to not be sad I started taking pictures & created a happy Halloween picture card to send to my family. After finishing that, I started painting using the ArtRage app on my iPad. Being able to pull up all sorts of various paints/drawing pencils/art supply apps (without the mess or expense) has become a lifesaver to so many disabled people, whether they are physically or emotional handicapped. After sketching out the flower I started painting it using watercolors-this specific app has a feature where you can bring up a photograph to refer to & actually pull colors from it to paint with. It is as close to painting as you can get, & there's no way a certain fuzzy bunny can jump up in bed & mess up wet paint.

Around 2 AM I needed a break so I turned to AMC's Fearfest Halloween marathon & as you can see the screams of the actors had her ears raised most of the night. I watch a lot of tv & Netflix streaming movies, & it so helps me refocus my mind off of the pain. During a commercial I went & took a picture of the gorgeous full moon. The yard was bright with reflected light, & I just stood in the chilly air for a bit in the silenced glow. After hours of terror, I fell asleep around 7 AM. Dad woke me up letting me know my brother & family were coming by, & after walking the 20 steps or so to the back porch, dad & I watched the first of the hilarious Zombieland as mom got the house baby friendly. My sister-in-law & my 1 & 1/2 year old nephew were dressed as Lucy & Charlie Brown, & my brother was Obi Kenobi & my nephew was a perfect blonde Luke Skywalker. It was if they worked out how to get 2 of my favorite things from childhood together meeting! I was so sore after so came back as they left & watched more Fearfest, read some more of my kindle ghost story, took another moon shot & inverted it, & as a treat lit a ton of candles.

I got depressed again & so I reached out to my online community. I cannot stress how much having someone who can relate exactly to what you feel physically & emotionally helps. I know at any time of the day/night I can find a friend, online, who I can talk to-it is such a great feeling. Having that accessible network is crucial to coping & survival. Without being able to gt out my emotions & talk I would be an absolute basket case. I'm so lucky to have hat-I can't imagine being housebound without the technology of today. I consider myself so lucky that I am sick in a time where I am never alone-there is always someone I can reach out to-as awful as life can be I am blessed with that knowledge.

Posted with Blogsy

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

Moving

We have now been in our new home for 15 days-my little apt out back has a ways to go, so I have been living in the house until things settle down. Chai bunny seems to be better after coming very close to death several times-right now that subject is too painful to think about. Leaving my beloved cat Zoe & dear rabbit Amsterdam buried in the backyard of the old house was too much to bear. After physically moving things that last morning for fear of my parents having heart attacks/strokes, my body is still in a major flare. We had to get my last prescription of pain meds in Alabama before we left-& ended up having to go to 2 pharmacies to find them as our usual drugstore was out. The 3 of us & my bunny & their cat rode smushed up in the front seat while we towed our car behind. I would have driven as in past times but with meds & physical condition that wasn't an option. Halfway through the trip-after food orders got mixed up & other typical problems happened-the uhaul broke down. An amazing lady dressed in her nice work clothes stopped & helped us for at least an hour while we waited on help. We ended up spending the night-sneaking pets into the hotel as it was the only hotel around & too hot to leave them in the truck...& that next morning is when Chai bunny became a rag doll, totally opposite her normal feisty demeanor. We finally got here after tears, sweat, prayers, fears, you name it Monday the 16th. I've kept a round the clock Chai bunny watching vigil, while my brother dearly had people here that next morning to unload & take the truck back. We didn't have cable, phones, Internet, etc for over ten days, but we were safe...not sound, but safe. Mom found a dr that just might work for me-neurologist who seems a lot like my old dear Dr. T, but I can't see him for about a month, so we will have to find out if & where I could get meds as I'll be without them for a week or so, & going off meds like that cold turkey is extremely dangerous. The weather here is so much hotter, & mom constantly worries about dad & heat stroke as he can't sit still & wants to get things liveable. Our refrigerator broke last week...we have had loads of these things happen & I worry mom will have a major breakdown as all our nerves are raw & bleeding. Sorry to paint such a bleak picture, but if you know me you know that I have to be honest. This is my therapy-coping-my way to vent. I wanted to catch everyone up & thank you so much for the many messages I've gotten letting me know I'm not alone. More very soon-xxxooo from us

Taken the morning of he move-sitting on the floor trying to get magical strength

Posted with Blogsy

2 days & Zoe

It's 2 days until we drive away from this house. It never felt like home except for my parents being here, but nowhere else did either. The Czech Republic felt more like home than here-I at least met people & made fantastic friends, went out, etc.

 

Zoe cat died Feb. 1st, 2011 & I still haven't been in the backyard to see her. With the emotional state I'm in, how on earth-this solar system will I say goodbye?

 

Posted with Blogsy

Swollen, dirty tears

After my neuro appointment, eyes so swollen & tears so spent

 

 

Migraine dazes

I don't have migraine headaches often, but when I do they take me under. After taking Chai bunny to the vet Wednesday, I took a nap & woke up feeling as if my neck was in a vice & there was a softball between my eyes, pulsating & waiting to explode. It is still here but has moved to the right temple. All I can do is try to sit or recline while supporting my neck until this passes. I will fill you in later about Chai bunny's magical adventure ;)

 

 

Feeling the shingle's fire

I first got shingles my senior year of high school. It started by my lip underneath onto my chin (following the nerve there) itching like crazy. I thought I had gotten a bug bite but there was no mark. Within a few hours-the next day blisters came up & the race was on. Since then, aged 18 through now, i've had shingles almost always on my face at least 30+ times. I now can feel them coming on, the stress bringing the fiery itching & burning until the blisters appear. I know this bout is brought on by my weakened immune system after spinal tap & spinal shots, & this horrid moving worries. Last night as I felt the shingles silently making their way to the surface, I let the tears come as needed, for holding them in would only further their strength.

 

Grieving the soon to be lost

Think about someone or something you use & love & depend on. For some a trusted hairdresser. I know people who have had longer relationships with the people who cut their hair than marriages. For some a beloved store-records, organic food, bookstore, etc. Maybe a great boss-a co-worker who goes above & beyond-an assistant. Your favorite waitress or coffee shop server-they give you a little extra topping or French fries. A company you work closely with maybe-you feel your business couldn't last without them. Now imagine losing them. They move, retire, get a new job...for whatever reason they're gone-or you are. For me, preparing to lose my doctors here feels like a death. Yes I know I might get better doctors, help, etc. I don't care. For 5 years my health & life have been in the hands of people who really cared on a deeper level than just a dr. They went the extra mile-trusted my opinions-listened to my ideas & loved that I really knew & listened to my own body & respected that. As I'm to call a pain center in Little Rock & try to see if they will take my bizarre puzzled case on tomorrow, I grieve. I can't imagine starting over. Again. From scratch. The 5 year 5 inch medical file relationship is almost over. It's like saying 'there's other fish in the sea'...yes maybe, but wow, that magically doesn't stop the pain. For me this is like a marriage ending. A part of me dying. Getting back on the dreaded merry-go-round doctor hunt. Is it worth it? Right now, deep in my heart all I feel is a resounding no.

 

Hands keep the fear away

I've always loved horror films, books, etc. A great thriller or race for scary survival & I'm there...but from a young age through my teen years, I would watch with my hands over my face, peeking out between my fingers, knowing if I got too scared I could close that gap & be protected. I still love horror-not just slashers but ghost stories or Jaws or the enemy might be a microbe or robot. I love the bravery. The fight. The willingness of some to sacrifice for others.

 

Now, having had severe stress dreams for the past 5 years, funnily enough they aren't your typical horror, but scare me so much more. I'm abandoned. I lose my pets or can't find food for them as they die in front of me. I'm back trying to work while the boss is ganging up on me because I can't pull my weight. I wake up exhausted, & honestly I hate to go to sleep. When you dream such vivid things you make yourself stay awake sometimes, terrified to go back to bed. This stems from lack of control-the stress felt when you can't choose anything anymore. I so often wish I could just sleep with my fingers across my brain, & keep the terror from entering my soul.

 

Spinal tapped out

Wow. So I knew the spinal tap would be one of the least favorite things ever, & what got me was the intense headaches for days after. You had to stay reclined to keep the headaches (while your spinal fluid came back up) at bay-yet for a person like me with bad back pain, staying still (even with loads of pillows under, behind, beside, etc) it was a rough week. Today finally am feeling back to my normal. Parents left today for a few days, & I can't say it's been an easy start to this Mother's day. I find out all results from the tap, bloodwork, etc in a week, but no news until then. A great surprise was winning a 'superlative' award from taking part in WEGO's health blogging month! That made my week. I won for best use of visuals, which thrilled me as my photo blogging has become my recovery process. :)

 

 

 

 

Superpower day-day 3 makeup

If I had a superpower right now it would definitely be the power to shield myself from things I don't need to hear or feel, like guilt for something I didn't cause-the kind of guilt that comes when you are dependent on caregivers & people for everything. They never mean to make me feel guilty but of course I do. Today dad went to pick up two medications-insurance never pays for one but they always pay or it anyway. I get downstairs tonight. I usually come down every night & sit on my parents bed & watch tv. When I first got here 5+ years ago I would watch tv with them, but my body's bizarre reaction to chairs & sofas got too uncomfortable, so they watch in the den while I'm in their room. It's my only real socializing of the day. I get my food, as well as Chai bunny's & then go back up a few hours later. Anyway, dad mentioned that they only had one prescription. Turns out the pharmacy just accidentally overlooked it, as most people can't pay for drugs not covered, if they have insurance at all. I called & talked to the pharmacy & as soon as I said my name the girl said 'oh yes, we missed putting that through'. I feel guilty he wasted a trip. I feel guilty on a summer weekend in a tourist town with bumper to tourist bumper traffic dad has to go back tomorrow. I feel guilty about the hundreds of medications I'm on, that I'm on anything at all. Being able to block out guilt for all of my sick friends would be my superpower.

 

 

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.

 

Kony 2012

As I sit here crying & bitching cos I had 4 really painful fillings yesterday, & have to go to the dr today, I watch this-& see how lucky I am to have medical care. Watch this please-spread the word, pass it on.

http://www.youtube.com/watch?v=Y4MnpzG5Sqc