And so this is Thanksgiving

Something has broken. Something snapped-the straw has broken the camel's back. Hope has disappeared & the bleakest, blackest darkness is here.

I was blogging daily for WEGO & the November NHBPM (national health blog post month) & was into day 5-10 when the flare came on, & for the first time I understood what 'losing consciousness/feeling' meant. The level of pain was so bad it simply wore me out & I couldn't stay awake. By no means was it peaceful slumber, rather sharply stunted sleep between fits of electric nerve endings firing off at insane intervals. Nevertheless, I stopped blogging. I stopped being able to do much of anything. Going to the bathroom was work. Making food was a joke. Something changed when the last weather related change came, & I came undone.

A Czech friend had asked & sent her PHD paper for me to look at-having been so eager to help I now haven't even opened it. A friend L noticed I had stopped communicating & sent several gorgeous pictures of fall leaves-I only saw one, & for me it represented how I felt. Instead of the beautiful colored leaf it was in black & white with almost silver overtones. He too lives somehow outside yet exists inside life. He understands the suffocating loneliness. He sees things skewed & different than the normal family bound individual.

Having not seen my new neurologist lately, I saw him Monday. My old dr I saw every month & sometimes every 2 weeks. Deep down I knew he wasn't the one-he wasn't treating me at all, rather seeing me every 2-3 months & on HIS timetable just giving me morphine. He left every appt abruptly, never returning yet leaving me alone in the room for 30 mins before his staff found me & gave me a random appt. so after barely showering, my clothes feeling so uncomfortable & seeing in the light of day my hair almost half grey which stunned me I went & waited. He came in, asked me about side effects-I think he had nothing to say yet felt he needed to & just asked a random question. I mentioned my face-I have periods where my face has the bright red butterfly rash that appears & lasts for days much like the Lupus butterfly rash. I mentioned it as my face was so hot & so red & I felt surely he would notice. Nope. He asked if I had Lupus. What? You, my neurologist, you're asking if I have lupus? Stunned I answer no, I was tested for that years ago, & explain that fibromyalgia often produces this same rash much like lupus. I explain that to said neurologist. Dad had come back into the room at that time & was just waiting with me, as he hen just stood up, said he would be back, & after speaking/listening to me for maybe 3 minutes leaves us, & his nurse comes 30 minutes later with half of my prescriptions & an appt to see him in 3 months. Right then was when this thing broke. I had gone for 2 months without seeing him & after that pitiful excuse of a visit he now doesn't 'need' to see me for 3 months? The nurse/staff says my morphine isn't due for a few days so I can't get the RX now. Let me explain-that kind of RX comes with a special 'do not fill until this date' kind of safety thing. My old dr gave me my RX a week or 2 before trusting & knowing I wouldn't & COULDN'T fill it early. As we get in the car & look up the dates we see I will be out of morphine this weekend, & as we know their office is closing Wednesday for the holiday dad calls & asks shall we pick it up then? He is told no, sorry, you will have to wait & call/pick it up the following Monday. Dad pleads, saying 'but she will be dying by then...' only to be told sorry & be hung up on. Obviously I will never go back to him, but what now? I have seen so many drs. I have been sent away by so many as a challenging case. I can't stay on this merry-go-round of piecemeal health care any longer. For the first time honestly my hope in anything is gone. I have nothing left. With no family or kids of my own I feel so alone. So lost. My old best friend was in Colombia & a girl/dalliance kept saying to him 'just be, just be!' & we always laughed about it...but when literally just being leaves you exhausted, without help or any hope to speak of, what then?

 

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Day 9-Care Package

I have received some very sweet, fantastic care packages in the past few years. They mean so much! Here are a few things I would include if I had the resources & means to send packages to all my chronically sick friends.

1-some fun foods & candy-many of us have to eat something with medicines, & cooking something at times is really impossible, so having at hand some cashews, candy, great buttery crackers, holiday cookies, soup, or a great loaf of bakery bread is a godsend.

2-really good lotions & lip balms. Fragrance free or something healing like lavender & chamomile is something I love. A fun selection of lip balms is always appreciated, & something like a long lasting candle is a very sweet touch.

3-an amazingly soft throw/blanket. Temperatures really affect many of us, & having a great go-to blanket & heating pad is a comforting thing.

4-super soft socks & slippers. Even though it doesn't take pain away having big fat fluffy socks can help the cozy factor tremendously.

5-a super digital library of tv series, movies, & books. My life would be far worse without Netflix streaming, digital books (holding a book open is very tough), & tv. Refocusing my attention is crucial for getting through the day.

6-a body pillow. I have 4 pillows behind me & 2 under me to create a recliner type sleeping situation. Lying flat isn't an option.

7-coupons for services-like a catering service for a birthday or something, a handyman to fix things you just aren't able to do-even a home nurse visit would be an amazing thing!

8-an honest, loving letter. Saying 'I don't have any words really but I love you' is so appreciated. We know you have no magic answers-we gave up on those long ago, but an I love you/I care so much is the best thing.

A very soft hug. Many of us have NO human touch apart from our doctors. Think about that-no human touch, hugs, etc for months at a time. It is like starving really. Even a touch on the hand brings me to happy tears. Illnesses are very lonely, & a chronic lengthy one? I cannot put it into,words.

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Beautifully Broken

We have loads of flowers in our yard-red, yellow (my late grandmother's favorites), & pink roses, as well as white cabbage roses. Huge bushes of gardenias which smell amazing when the wind blows just the right way, & these purple flowers on an almost tree size bush. Mom discovered that when they wither up they become heavy & break off, & the ground below is littered with the fallen flowers. They are very pretty, but the ones that fall off become a darker shade & are a much more beautiful, very different looking flower. The live ones remind me of the normals-people who don't have the chronic invisible illnesses. They give to the world. They add something. The wind picks them up & their scents fill the air. Many people I've talked to feel guilt over not being members of society who work, do good for their communities & add positive aspects to the world. Every Monday especially I feel such guilt that I'm home in bed when most people are out contributing to society. Having been a teacher I really feel as though I let my former students down. I'm the burdened withered up broken flower who now litters the grass. Though I much prefer the darker, richer shade of purple I've turned into, trying to get through the guilt is so heavy that my petals pull inward inside the center, become very heavy, & prematurely fall to the ground. I know my guilt is unfounded, yet it's still there, on the back burner of my conscience.

The flowers open full-we aren't sure what kind these are.

Dried up fallen ones that mom brought over last night.

The gorgeous colors of the dying, withered blooms.

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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

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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?

 

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The guilt of being sick

As dad is in my room, vacuuming & preparing for the carpet guys to come measure for carpet to replace what Chai bunny & I ruined, my heart breaks. I feel I shouldn't be allowed even to have pets. We say some people shouldn't have the right to have kids in their care & now I wonder the same about me after Chai bunny passes.

After seeing my brother, his lovely wife, & adorable nephews yesterday, I woke up today so sore my arms feel like they have been run through pasta maker arms that flatten over & over-& I wasn't even able to sit while they ate lunch, pick up my one year nephew & barely could gently hug my older nephew. I realized as we will soon live a few miles away from then they are probably realizing that I will become their burden-one they don't deserve, need, or should have to handle.

 

 

Tangled up layers of a person

It is hard to know when I see myself which parts have been there all along, which are just coming out, & which are just the way my persona & body & soul are coping. I wrote this earlier tonight, as the house was getting ready to be shown to sell. Me behind the filth, the perceived anger, the not included in decision making then when I get 'angry' what you see. Me behind the 'how can you live like this?' me behind the purposeful lives of my siblings & their families. Me behind the failure. The pain. The searching. The lost. The forgone conclusion.

 

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.

 

For a fool

After basically floating through ages 8-26 due to death of my brother, anorexia, endometriosis, etc just to mention a few things, I finally woke up for lack of a better phrase at age 27. I was like an 8 year old emotionally in a 27 year old body. That served me well in that everything-each sensation seemed so amazing. I was such a child but honestly so. On the downside I was & still can be so trusting. Things like dating, etc takes on an entirely new meaning when you should know better but you honestly don't because you missed the part where getting equipped was taught. Now that doesn't matter as dating isn't even a blip on some far off telescope. My last date, kiss, etc was like 8 years ago, & I don't see that changing. That's ok, as just getting through a day is enough mental head games on its own. However, when the knowledge base of what friends are comes into play, as a emotionally stunted teenager in a 41 year old form, I expect different things. I'm more cynical now that I'm 13, but still really get my feelings hurt like a 7 year old would. My mental formation grew up much too fast & yet was stunted so much. Add to the mix the chronic pain nightmare & you really do learn who your friends are. As soon as I got diagnosed with fibro, my grad school really good friend, girl G, well, she thought I was trying to get out of work. Needless to say that broke my heart & I hear she's married & maybe has a kid. Crazy as I was with her the night she met her husband. As my mom says 'consider the source' & I do but wow it is very gut inducing painwise. People like me (sickies) go through things like this, but I think most of us have that one person who really break our hearts. Like a detective who has that one case that still keeps them up at night, & even though they know they will never get their answers, they hold out hope. Listening last night to the just delightful band The Shins, I heard off their new album a song For A Fool. For me it took me to the heart of that friend who you know is gone-but still you hope yet know you were a fool, albeit innocently, for believing their words. Their rescue plan. Their liquid courage laced lies. I'm been wracking my emotions for 6 years about this friend, & hearing that song I want to say that no longer will I listen or hold out any hope that they will someday get real & deliver the friendship expected or deserved. I really hope this time it sticks.

 

Get out.

Physically & emotionally the past day or two have been awful. Scale of 1-10, a 17. When I went upstairs yesterday to check on Chai bunny & try to examine her & see if she is still sick (long story, but she's possibly sick & I'm still freaking) I took this shot of her. She was mad, sick of me trying to examine her, & mad that I've been spending all my time downstairs while the parents are gone, & I'm taking care of Macy cat,who is also sick. We should just open a damn clinic here. This picture is so cute & funny, & after I took it Chai took off to the corner & thumped loudly to show her frustration. I don't blame her. Sitting here crying I see myself looking into the tunnel watching fibromyalgia among other things take over my life, no matter how hard I fight to keep going. God I just want to give up yet also just beat the shit out of it-& I can't really do either. It's so frustrating. The toll constant intense pain has on a person can honestly drive them to madness, in a heartbeat. How long does that heart manage to keep beating?

 

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.

 

Masks

We all wear masks at times. Mine lately seem to be mask of the unknown future. Mask of a move. Mask of the old me. Mask of saying nothing & keeping the peace. Mask of hiding how scared I am of leaving my doctors. Mask of feeling forgotten.

 

Finished reading my 2nd book!

Thanks to my kindle & the ability to read again because of ridiculous 'handicaps' I've finished my 2nd book in many years. It was a far cry from my 1st, Agatha Christie, but every bit as wonderful. Being able to get lost in books again has been so fun. People lose & gain all sorts of things with any longterm illness, & among things like living with my parents, not being allowed to drive, not able to cook much, buy my own groceries, get a normal haircut, wear makeup, & a million other things-small & huge-they add up to a level of grief that's humbling & humiliating.

I finished the first book of The Hunger Games & loved it-yes I'm 41 but her struggles to survive resonated with me in a way that's hard to explain. I watch & now read a lot of gritty things, & a lot of that is because I try & take mental lessons on survival from each story. For some it might be depressing-for me it's training. This pic is a photograph put through 2 apps & I call it the Teardrop Nebula. I think Katniss from the Hunger Games would love it & hate it-hating the emotion of tears & being weak, loving the clouds & stars out hunting in District 12.

 

I'm now reading (& halfway through) The Snowman & a tiny bit through book one of Game of Thrones. One a cracked detective in Norway, & the other a magical mystical world of epic fantasy. They too will be on my survival training guides ;)

 

Heating pads & terrored thoughts

After my 4 filling go around a couple of days ago, my back jaw tooth is starting to lessen pain wise, but the jaw & neck strain of one with TMJ has hit hard tonight. I've been laying on my angry back so I can have my head propped up with that strangely uncalming blue heating pad behind my neck, offcentered to the left with my face trying it's best to keep my unhelpful left jaw somewhere near the heat. The featured pic is reversed, as I have no good light source at present on that side, but hopefully you get the point.

 

My heart ached as I just finished a funny, grieving, poignant mystery wrapped in an unlikely love story from a British TV series on Netflix. Thinking of moving on-& the evidently us moving to Arkansas hits my heart with a panicked bolt of terror. Yes there are pain clinics...but have doctors moved there since I left who can do the spinal shots? My first Little Rock doctor did shots but at the source of the pain-not the root where the pain originated. Yes, I'm told pain killers like I take here are probably possible, but that alone isn't enough. And probably? Probably? I silently start weeping, quietly as Chai bunny has been so concerned & up on my bed no less than 7 times in the past few days-tears running down my half-hot face as I ponder 'probably'. Sitting in my primary care doctor's office Wednesday, I felt like I was holding out as I could tell she knew I was holding out, as I can't figure out how to say the words 'we are probably moving. In a few months'. Dad made the 6 month blood tests & follow-up as I waited in the car, not being able to stand lying in her office anymore. I asked him why we even made an appointment that we know we probably won't be keeping. It came out harsh when it meant to come out terrorized, but my brain is so lost it doesn't know how to communicate anymore. I just wish I could have a heating pad wrapped inside my head, go into a coma-like state & not come out until there were no more probablys, & only things have been made markedly better with your 3+ medical specialists.

 

Ying & birthday yang

Birthday candles through the Percolator App

Birthday self portrait 9:45 PM, upstairs, alone.

 

Worth at least a few words

After yesterday's adventures in dentistry, these pics show better than I can explain how I feel on the outside, inside, my physical self, emotional self, mind, soul, heart, & brain.

 

 

Grieving the small

When people are around that normally aren't, as a sick pro you notice the little things. My sister, husband, 2 teenage nieces, and adorable dog are leaving tomorrow after being here a few days. We've had a great time, & today they shopped, got mani/pedis, etc. Chai bunny got petted a good while by lovely Abby, & loved her...& didn't want me to take her back up. She thumped when I put her back upstairs, as she had traced out to the full attention of someone who is sweet & is able to sit on the floor with her, & not like me-who has to reach down from the bed. Emma got awesome new shoes & Abby the cutest dresses. Cameron & I talked iPad technology, & Sloan & I talked everything. They ate out, took dad to the movies, & did the normal things. I forget how much people really live until they're around. Of course I hold no bad thoughts about any of that, but seeing a dress I might have worn, or a movie I would see on the big screen, etc, a part of me grieves, & parts of me die. That's normal, & if I wasn't that way I'd be lying.

 

 

Self in fade

Often times seeing family, as fantastic as it is, leaves me lonelier than I thought possible. My siblings, both close to my age, married & with great kids is very bittersweet. My glowing, honest, thorough joy for them is also shadowed by the me that could have been, or the possibility that one day it could change. Dad asking in front of the group to go to the movies with hem, knowing fully how bad it is just riding in a car, much less being in difficult seating, trying to walk distances so tough, but feeling like there might be a slight hope that maybe I'll say yes...cos I don't look sick. How do you explain how most chairs are torture chambers? That sitting at the table for 30 minutes leaves one in excruciating pain later that night? The gracefulness that they hopefully will never know that pain, but the frustration felt looking in their puzzled eyes as they try to understand.

 

Czech pub crawl days

 As my parents are getting us somewhat started in the moving process, every single day seems like there are new things of mine in the garage to discuss of 'can we give this away?' or boxes to sort through. Day before last one box held some very dear treasures. It was in a box of what seemed to be my lingerie drawer, & as I don't really have a need for much of that these days it had been in a box in the garage. When asked why two shirts & some others dear things were in said drawer, I smiled & answered that they were so special they deserved to be kept with lovely things. One was a beer shirt from a Czech company I worked for, & the other was my dear friend Henry's birthday pub crawl t-shirt. I cried when I read & saw all the things on it-a Scottish flag drawn by Stevie, Zoe the cat on one sleeve, Rob's 'Marnie is cool' heart drawing, my 'pivo/piva/piv'...the three forms of the p,urals of beer depending on how many you were ordering, with a little beer mug next to it. I miss those days so much, & the friends I still have now, even ten years on.