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29-6-2013

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HALLELUJA!!!!!!The anesthesiologist has found the circular baggies with tiny marbles in his nether regions and gave the okay for surgery next Monday ……….. It took me a week of stress, lots of phone calls to the hospital and my health insurance company. What do you mean “stress is not good in your condition”! Still they “forgot” to phone me when the ban was finally lifted. When I found out it was too late to get a newly added pre surgery medication prescription to me in time to order the meds at my local home physician’s office ……… who’s closing 2 weeks for the summer holiday. Luckily they know me enough to write their own prescription for me, instead of waiting for the snail mail to arrive. I will be asking for the complaint form the moment I arrive at the hospital.

Everybody has been warned sufficiently that when shit hits the fan they will be running to save my life, because I’ve proven plenty of times before that I’m extremely good at lots of shit in all kind of surprising colors and variations. Doped up to my eyeballs to prevent shit from happening. I just needed to get all this shit out after all the shit I went through last week SHITTERY SHIT SHIT!!! ... I'm done!

To make things easier I got a call, the same day, that mom will finally get the extremely dangerous medical treatment to attempt and get her severe disease under control. We’ve been waiting for over a month for them to round up paperwork. She will be admitted in the only hospital who treats the 3 people in Holland with this extreme disease. Of course they wanted her to come in on Monday too, to make things easier on us. I wasn’t around to catch the return phone call but she made it very clear she won’t allow a hospital stay half across the country until I’m safely home. I would have loved to be a fly on the wall for that conversation. As sick as she is she’s still a mommy tiger when it comes to her kids. It means I will have to arrange her hospital stay the moment I return home. So much for getting time to recover.

SEE YOU ON THE OTHER SIDE!!!!


22-6-2013
With only a week to go until the surgery I was going to write “see you on the other side” but I ended up getting a nasty surprise. I would almost say as usual because it's a bumpy ride. I've had my 3 pre-op appointments yesterday. The first, a pregnant nurse, had an incredibly positive 5 minute timespan to sort out my medication and medical history. As I pulled out my huge bag of medication I told her "think again". She laughed but that didn’t last long. She spend most of the 45 minutes she needed cursing at her invisible co-worker who filled out the pages appearing on her computer screen. “That’s all wrong, I’m just going to start from scratch”. The next nurse was suddenly very familiar. She’s one of my next door neighbors and lives across me. She took an equal amount of time explaining all the do’s and don’ts before and after my surgery. Now realizing why the ambulance shows up in front of my house so often lately as she flipped through my medical paperwork. Gave me pre-op medication.

Off to my last and hopefully short pre-op appointment with the anesthesiologist. It was short and sweet alright! He took only a few seconds to tell me he didn’t want to do my surgery. He has never heard of generalized dystonia, has no clue what it is. Even doubted there’s a diagnosis from a specialist. I would just have to go and see another hospital about the surgery. THUD!!!! He didn’t have a problem with it a week ago, when my surgeon phoned him right in front of me. He’s still requesting additional information but it’s my experience that when a specialist gives curt replies and doesn’t feel up to it, they usually don’t change their mind and are just looking for a paper trail of excuses to cover their asses. He literally placed a bomb and the timer is ticking. I don’t know when it’s going to blow. I’m familiar with the hospital he mentioned. They would start each and every test all over again and probably come up with even more. They don’t trust results from other doctors. I also know of some medical errors they made, close-up. Since most schools are closed for the summer holiday is starting that means much delay in appointments. Not to mention that it will take considerable traveling since the hospital is much further away. With mom so sick that’s going to be a big problem. I’m still too shell shocked that my alien probably won’t come out for a while. I need to climb the barriers and battle for my existence again. I can only semi digest food with the help of medication. They think it has difficulty getting past my alien. Too much time will no doubt cause an emergency sooner or later.


16-6-2013
My surgery is scheduled for July 1st. They need a bit of time to go over all the risks and my high infection blood levels to go down some more. The nurse shoved a little questionnaire in front of me and handed me a pen. "Could you please fill this out". It quickly turned into a huge task. I had to list all hospitals, doctors and ailments. My brother fell off his chair laughing. I needed extra paper because the 2 lines definitely weren't enough. Flipped the paper over and continued on the back side because I saw some more room there. What year ..... blablabla? Surprisingly I even remember all this stuff and bro doesn't. The nurse stopped me to first get some lab work done because they were CLOSING. I feel like I'm taking a school test, with seconds left to fill out 3 more pages. No clue if I passed. I only know that at 3 separate pre-op appointments I have next week I will face 3 people who will freak out seeing my answers. Calm down, you have been trained for this, you can do this, just get the sucker out PRETTY PLEASE!!!
They say it’s positive to picture my 3 headed alien melting or disappearing. What image should I pick? Just before all the madness in the past months started I managed to see Olympus has Fallen with my brother Mike. Seeing Mike Banning sticking knives into terrorist brains again and again gave me the idea for my positive imagery. It pretty much looks like this ..........

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10-6-2013
When it rains it pours. Some people are born unlucky. I've heard all these comments and more in the past months, which have been really rough. Sometimes life becomes a rollercoaster.
First the flue that I couldn't get rid of. My yellow crested cockatoo Rikki developed a skin condition, known as wingweb dermatitis, which took a lot of work to get under control. I spotted her 25+ years ago in a local pet store. Almost completely bald and missing a few toes. I actually begged the owner, whom I knew very well, to sell her to me. It was always a dream of me to have a cockatoo but they were unaffordable to me. My dream seemed far out of reach until the day I met Rikki. She was the exception because of the state she was in. The store owner finally gave his okay but made it clear I could not return her. I quickly found out why. She had abandonment issues BIG TIME! Whenever I would leave the room she would yell her head off. It took some time but she was the sweetest bird ever. Would never bite, only gave a short yell if she wanted a cuddle and she always had a ball playing. She was a real cuddle bird. She actually told me herself her name was Rikki. I assumed she was a boy until the day I found an egg in HER cage. It freaked me out as much as it did her. In May Rikki suddenly had complications. I had to choose between having her euthanized or having her wing amputated. I chose the last option because in the last 25+ years I’ve learned she’s a fighter.

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Meanwhile my mom is still severely ill and it's getting worse. According to her specialist there are only 3 such severe patients in the Netherlands. Three months of heavy medication, including anti-cancer meds, haven't done shit ...... the exact words of the specialist. Hardly a medical term but after running more tests he could only confirm what we had already seen in the past months ..... it hasn't done shit! He promised a big improvement and it didn't happen. I've even had to learn how to give her injections from a little flyer. No biggie, I can handle anything.
Her hobby are her horses. It's her whole life and we don’t have the heart to take her joy away. Her knowledge of horse breeding and bloodlines is amazing. Having something to live for is just as important when dealing with a rare disease. I know, I’ve been battling my muscle disease for decades. So I patiently take care of her and her horses every day. Praying her specialist makes good on his promise. I’ve held most of her horses in my arms when they were born. Being differently abled has never stopped my parents trying to have me take part of daily life. I was picked up in the middle of the night a few times and rushed to the birth of a foal. During hay season my dad would carry me over his shoulder across the fields to a tractor …..  because I could still steer. My mom has always said "I haven't put her in this world to abandon her". Many have told my parents to put me in a home .... to get rid of me, even before I became disabled. One day I met a woman who was born severely disabled. Her parents did stick her in a home. She never learned how to read or write because it was considered useless to teach her in those days. Now she lives on her own and goes to schools to educate children on disability. Traveling by train is a struggle because she has to read where the next train will depart. Counting money and paying is a problem because everybody thought she was a disposable human being. I was the one who pulled her out of the UNcaring facility she was in and put her in a home project half across the country. It makes it possible for differently abled people to live in their own house with a nurse only a button click away. She will no longer meet her dad in the streets who spits at her and turns his head in disgust.

Rikki was doing alright after the surgery but just when you think things can't get worse shit hits the fan ........... in a sneaky way but with a big bang!
Three weeks ago I had my 3rd medical emergency in 3 months’ time and ended up in the ER again. It's never good when they go "hey you again". The other times I received medication and could go home again. This time I got a nasty surprise, a 3 headed alien was detected in my belly. The doctor who found it was so stunned she forgot the patient in her excitement. They wouldn't let me go. A wise decision because within 48 hours my fever spiked. Just before midnight on Whitsun everybody started running, rushing me through x-rays, drawing blood and some more blood. When they do that on a Sunday and a holiday and in the middle of the night you know it’s not good. In no time they were pumping antibiotics straight in my veins, 5 times a day. By now I know I had a weird massive inflammation. The doctors were very vague, to put it mildly. Why I had it is still a complete mystery because it's unrelated to my alien.

During my unexpected "holiday" I wondered if and how much I was going to share of this nasty turn on events. I'm not a person who shares everything on Twitter and Facebook, my pages are pitiful. I have a healthy mistrust of FB and Twitter keeping and abusing my information. The reason I chose to start this blog site. I feel I’m constantly balancing my private needs against my plan of leaving something behind. Being differently abled you’re too easily erased as a human being. My blog is also becoming a quick message to everyone who cares. I regularly get sweet messages and emails from people who are concerned for my wellbeing. It's super nice of them to inquire and I always do my best to write an uplifting response, Tinkie style, but it eats up my energy. When I was so sick I quickly realized it would be too exhausting answering personal messages. Tweeting was an easy quick solution. I realized I'd be having this problem more often in the future because doctors kept telling me I need surgery asap. Due do the infection they couldn’t because the infection could become fatal if they opened me up. At one point I reminded myself I started this blog to let others benefit from my (medical) experiences. Something to leave behind now that the risks of complications seem to keep increasing over the past months. Why shouldn’t I share this totally unexpected and new blow? There were unexpected pleasures about my involuntary hospital stay. Let’s just say I never would have thought in a million years to be extremely happy to poop again! Did a victory lap around the room too.

I was send home to recover from the infection “You are still very ill and absolutely need plenty of rest!” DUH a new doctor who doesn’t know yet that I’m naughty by nature
smiley                                    
Last week was particularly bad. Mom had been admitted to a hospital very far away the week before. My puppy Scotty was limping and I took him to the vet. She decided to make some x-rays the next day. I bought Scotty when I had to say goodbye to my old chow just before Christmas. I nursed her for months because the vet still saw possibilities but she declined so fast from old age. Scotty looked at me with big puppy eyes in the morning "I'm hungry mommy, where's my breakfast?" He's still devouring lots of puppy kibbles. Sorry not until you've had your x-rays. The result was terrible. His hind hip was nonexistent and the vet advises euthanasia. She advised I take a few days. I spend the time emailing back and forth with specialized orthopedic vet clinics and the breeder. It’s extremely hard having to make such a decision for a bouncy 8 month old puppy. I’ve never been so torn because all my past dogs got old.

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Rikki suddenly went downhill fast. When I was on the phone I saw her fall off her perch. She lay completely flat as if she was dead. We made an emergency trip to the vet. She received oxygen, glucose injections and medication. At home she ran across her perch as if nothing had happened. I was up half the night cuddling her. She rubbed her head against me and loved the attention. I only got a few hours of sleep. To my great shock I found her dead in her cage in the morning. She's been with me for 25+ years and I can tell you it's not the same losing a cockatoo or a dog with a much shorter life span.
Only 2 days later I send Scotty to the rainbow bridge. I spend hours playing with him, trying to hide my feelings. Animals sense when they are going to die. This has been the worst week of my life. I was still torn but it seemed the wisest decision. He already didn't like going into the vet office because they did unpleasant things with him to take the x-rays. I guided him in as gently as possible and tried to keep my composure to not stress him out. He slept away in my arms on his favorite blanky as he got the 1st calming injection and then the 2nd anesthesia injection. Before he got his 3rd fatal injection in his heart the vet put him on the table. Beam me up Scotty was the first thing my brother said when he came up with his name, a Scottish name for a Scottish West Highland White terrier aka Westie.
It was actually the vet assistant who tried to comfort me on my way out of the vet office, who gave me peace of mind. She said the extreme damage on the x-rays shocked them all and that it was clear his hips had never developed normally. Two days later my acrobatic sun conure Tiki showed signs of pneumonia. Another rushed trip to the bird specialist. He spend a week at the vet clinic. He was doing well for a few days but he’s back at the clinic and on antibiotics as I’m writing this. There must be a very dark cloud hanging above my house.

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It's like my life consists only of hard times .......... but I'm a girl who smells the roses. Who sees a butterfly dancing in the wind and smiles about it. I accept the things I cannot change and try to change the things I don’t have to accept. Life goes on despite all the worries, except I now have a lot of vet bills, bills, bills to pay. I was all alone taking care of mom's horses. The swallows are busy making their nests in the stables. They usually accept me but attack me when I put on a clean shirt or hat. Soon their babies will be filling up the nests and the air filled with chirping babies. The half tame wild crow greeted me in the morning and talked to me as usual. There’s not much time to ponder. Armed with duct tape and scissors I have to guard the shipment of hay. Duct tape any holes in the plastic cover. My electric vroom vroom barely made it to the back paddock. I love playing with my toy but I wished they'd have wheelchair tanks in the Netherlands.
wheelchair tank
Why are men always blessed with much bigger equipment? They love to play with THEIR toys and are territorial about it too! How tiny I look!


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7-4-2013

Click photo to see the bad bruises in their full glory
They say I like to live dangerously, I of course don't agree, and I can be a real klutz ..... a real bad combination. Things sometimes go wrong. I land face down between my garden flowers or get stuck in a weird position and need to be rescued. Seeing my feet and the sun at the same time means I tipped over my wheelchair again. Usually a head pops up in between the sun and my feet. I still don't know how I almost separated my thumb from my body this week. I sure did try but I failed. There goes another nail. A manicure is soooo wasted on me. If you want to know how I easily solve this bad bruise check out Arnica
While I was adding the use of Arnica, Ruta and Rhus Toxicodendron to my Natural Remedies page I also added Conium Maculatum. Most generalized dystonia patients know what it feels like to be a human vibrator. While that may seem funny to some people having all your muscles vibrating constantly is a nightmare and extremely exhausting. Like I stumble on bad things, I sometimes stumble on good things too such as a way to yank out the vibrator battery. Conium can actually be used to try and control the painful dystonia spasms, although it has to be administered very carefully.

It just wasn't my week. When I got to my mom there was a tractor dumping liquid manure all over the street. I was safely in a car but knew I would have to drive through it in my electric wheelchair eventually to go grocery shopping. First things first, phoning the police since it's highly illegal. My vocal dystonia had a run in with the police computer system which Pamela so eloquently describes under automated speech recognition. Please state your city .... can you please state your city ... can you please state your city again. Was your city Twente ............. whaaa after tearing my hair out that even after asking me 3 times the computer spits out a town at the other side of the country the damn thing asks me if Twent was right ........... HELL NO ............. and then finally understood me because it promises to connect me to a human being. Good thing the house wasn't on fire!!! They promised to dispatch a police car while we watched some guys trying to sweep it all off the street as fast as possible. The police showed up too late to catch the culprits but they left evidence behind who was responsible. After they went searching for them I bit the bullet and started on my trip to the grocery store. I hiked up all my bags because driving through it would cause an upward splatter ballet. I thought I had gotten through it unscathed but when I was zooming through the supermarket I started noticing a sewer smell following me around. Sure enough the liquid manure had left a nice smelly spray all over my wheelchair. People near me started rubbing their nose and looking funny. I never done my grocery shopping this fast. I feared I was going to be thrown out. When I arrived back at my mom's to drop off her groceries she calmly answered ........... they must have thought you shit your pants. OMG I hadn't even thought of that!!!!!!!
 
WOW what a photo! I always loved Sidney Poitier's movies. His performances struck me at a very young age. I would devour every movie I could catch on German tv and his performances left a lasting impression. Morgan Freeman is definitely the Sidney Poitier of the last 2 decades. Today I spotted this comment on Morgan's facebook page "Most of us need something to hang our hopes and dreams on -– Sidney Poitier was my guiding star. I always tell him that". He couldn't have written my feelings any better. I hang up my hopes and dreams on my little movie star adventures. Since Gerard Butler has become such a disappointment I need new hope. I still feel lost that I lost my dream and can't seem to find a new one. I've never had my hopes and dreams shattered so deeply. Who breaks a butterfly on a wheel ............. Gerard Butler


2-4-2013
Last week I received several suggestions that it would be better to change my Gerard Butler experiences. Make it 100% positive, sugarcoat it into the perfect fan story ...... but only the Gerry part. Nobody had complaints about the Lord of the Rings section.
I understand where they are coming from. They hope Gerry will read the sugar coated version and come to the rescue like a true hero. They are worried he'd sustain permanent emotional damage reading this version. However I can't do that and I am sorry about that.

First of all I can't lie. I can't change Gerry repeatedly not spotting me into being in 7th heaven that he missed me. I don't see how I can change my disappointment about having to battle for premiere information time and time again into being grateful it has been such a struggle. I would not only be lying to myself but also insulting Gerry by lying to him IF by 0.000000000000000000001% chance he does read my story. Honestly my house will get sucked up by a tornado and transported to Oz long before Gerry ever reads my story. There’s such a thing as fan management. People gathering positive and negative stories from fans to assess how Gerry or one of his movies is perceived. PR strategy is partly based on such information. I believe I serve Gerry better by being honest and telling the full story instead of neutering it into a lie. Did I just mention Gerry and neutering in the same sentence? Bad me .... giggle

Second that's not how I see Gerry, as a hero riding in on a white horse to rescue me. I expect more and think higher of him. I see him as a strong man who has been through a lot in his life. I'm sure he has the maturity to read my story the way it was written .... as a fan comparing my experiences with Lord of the Rings fangroups and stars against my experiences with Gerry and his fans a decade later. Many things have changed due to social media and other things have stayed the same. Laugh about it, especially Sir Hump a Lot seems to make men giggle. Maybe learn a few things here and there about a fan's perspective, to think about. I can’t picture him throwing a hissy fit about it without picturing him in a short skirt applying pink nail polish, while complaining I'm not a BFF anymore. He’s a guy, not Paris Hilton. I think the distance between fans and Gerry is much larger than some fans perceive it to be. He has better things to do as reading fan stories.

I’ve talked to several fans this week and I do want to add something on their behalf. I need a premiere date and venue information in time, instead of last minute confirmations, to be able to make travel plans. Get the most important things arranged as soon as possible such as making sure my traveling help has off from work. Getting my drugs paperwork stamped by the government which takes a week (if they don’t screw it up again) to prevent I end up in a foreign jail under suspicion of drugs trafficking, with somebody putting rubber gloves on, asking me to please bend over. Yes I know I watch too much tv sometimes. Finding a hotel nearby to be able to manage my pain issues. Without having these vital things arranged I can't possibly travel. Other fans struggle with these last minute confirmations for much the same reasons: getting time off from work and being forced to buy more expensive traveling tickets because it’s last minute. Many of us wish we’d have a money tree in our back yard but sadly we have problems getting the seedlings.

Over the years I’ve repeatedly seen that confirmed information is only available days before, making it virtually impossible for many of us to attend. This to me is very much a Gerry thing because in the past I’ve seen stars announcing their schedules on their website or on social media. This gives fans the time to make arrangements. Noting that of course every schedule can be changed last minute when an actor suddenly gets a job offer (new role). It’s however my experience that few fans mind that when they learn there will be a new movie. While Gerry certainly seems kind to the fans he meets I won’t go as far as saying he’s easily accessible because of the clear lack in timely appearances information during premieres. For instance the London premiere for Machine Gun Preacher was arranged around 2 months before the movie actually premiered. No fans knew about it until it was over, which shattered many plans. Why is it a bad thing for Gerry and his team to hear about that? Maybe I should end this saying I 10000000% hope Gerry reads it and plays angry so I can tell him to kiss my ass … pretty please, I promise I won't wear a diaper ….. and I'd surely have another very funny story to tell because Gerry has a great sense of humor .... most of the time!!! His infamous foot in mouth disease sometimes gets the better of him.


29-3-2013
HAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHA
It's very frustrating when you see mostly young able people taking up one of the rare handicapped spots


29-3-2013
All the news surrounding Olympus has Fallen and Gerard Butler (see March 9) has reminded me of fandom in Lourdes, of all places. It's the funniest form of fandom I've ever come across.

I went on a pilgrimage to Lourdes a few times. On one of those trips a new aid bishop joined the party ...... and what a party it was. His name translates to Mr. Young and at age 42 he certainly was young compared to the other clergymen. I was in the guest hotel (aka hospital) when one of the ladies (aka nurses) handed me an autographed picture of Mr. Young. They are very big on pretending it’s a holiday so words such as hospital and nurses are strongly forbidden. "What’s this? The new aid bishop will be here this week”. I was amazed. Being among senior citizens for a week means I have to adapt to their lifestyle and this totally clashed with it. Autographed pictures are something for a rock star?

It wasn’t long until my friend and I spotted Mr. Young after mass. We were all getting coffee outside, in the shade of huge trees. My friend had wanted to become a nun. Apparently there’s one convent in the Netherlands for differently abled women. They accept everybody, except women who are spastic like my friend. She wanted to discuss this with Mr. Young. We put our electric wheelchairs in forward motion but immediately had to make a hard break to avoid hitting some elderly ladies coming out of nowhere. They had spotted Mr. Young too and were shooting by us on the left and right side like deer throwing themselves at the head lights of an uncoming car. We had never seen 80 year old’s running that fast. Canes and other walking aids fell left and right as the ladies were falling over each other to get to Mr. Young. My friend and I were sitting there with our mouths open, completely stunned at these images. “It will slow down in a minute, let’s just wait before we hit one of them”. Neither one of us wanted to play the game of how many elderly can we hit in 5 minutes. At one point we turned our heads to look behind us. “Where are they all coming from?” We were close enough to hear the conversations but couldn’t get close enough to ask for a meeting between my friend and Mr. Young because of the constant stream of running ladies. At that age it’s more like staggering at high speed but they were suddenly incredibly fast, as if they had snacked on Popeye’s spinach. The ladies were flirting up a storm. A skirt was lifted just above the knee to show how desirable an elderly lady’s legs can still be. After a while aid bishop Young saw an exit among the group of elderly hussies and made a break for it. He literally ran away leaving us utterly perplex about what had just happened. Fandom is possible at any age if the subject of affection is desirable enough.

We couldn't get to Mr. Young because of our wheelchairs just like I can't get to Gerry because of my wheelchair. There's only one person I know who manages to clear a path, my MOM. We have went to quite a few large events with lots of people. To me it quickly turns into a butt event because people have the habit of looking down at me for a second, see there’s a tiny space just in front of my wheelchair and throw their butt in front of me. The view is gone and all I see is butt because that’s my eye level. While I grumble about this disrespect my mom however reacts differently. The front edge of my leg supports are blunt but at the perfect ankle height. Hitting somebody walking in front of me just slightly will hurt big time. That’s what people stepping just in front of me are risking and why I'm careful to have a save zone in front of me. To my mom people's rude behavior is like a red flag. “My daughter has just as much right as anybody else to see this event. We will walk where we want to". In no time I’m in the midst of another game of Roadkill where any ankle hit in the designated kill zone is a score point. “If they don’t respect you, we don’t need to respect them!” Any angry look towards us are bonus points followed by “you are in our way”. She actually successfully manages to force an “excuse me” out of them and make them walk somewhere else. Except I cling to my wheelchair and it’s breaks for dear life fearing she’ll hit someone hard enough for them to fall. People don’t realize that when they step in front of me and there’s not enough room they will automatically fall backwards and end up in my lap. It has happened quite a few times, without my mom playing kamikaze on their ankles. I actually had one of the Lourdes priests end up face down in my lap but that’s another story ……………….


13-3-2013
When I was a teenager my mom had to go to the doctor's office. Doc jumped on her the moment she got in the door. "Why are you not picking up medication for Susanne anymore? She can't live without it". Mom's answer was that I was taking steam baths with chamomile and finally doing much better. "Oh that's an old remedy which works well". Mom was puzzled why our doctor hadn't told us anything about that old well working remedy. The answer is simple. He wouldn't make money selling his chemical medication if his patients didn't need them anymore after being told about natural remedies.

While there's certainly chemical medication we can't do without it's a shame many people are oblivious how easy it is to help yourself with natural remedies. A major part of trying to control my muscle disease on a day to day basis is done by natural remedies. It's taken me decades to gather all these tricks. Partly from learning how your body functions and listening to it. Partly from advise by doctors or patients, forums, old books etc. It may be very helpful to others who are dealing with health issues and pain. Do some research and give it a try Natural Remedies


9-3-2013
Having had several life threatening attacks which had me barely clinging to life I learned quality of life is my most important goal above all. That's why I want to start this blog with my way of taking care of my mental health. One observation I've made over the years is the multitude of people who fall into depression when faced with illness. They simply can't climb out of their hole and lift themselves above it. They resign in their faith, have to be poked and prodded with mental care. Health starts in your brain. If you're not in a good place mentally everything else will be worse. Being positive is very important to proper pain management.

Among disabled people there's a pattern of finding an escape in books, music etc. As a young child I did 5 years of ballet. It brought me in contact with classic music and I loved it. As a teen various pop music styles became a favorite next to classic music. I loved going to concerts but can't do that anymore. The music resonates in my spine like a tuning fork for days, if not weeks or months. It made my muscle disease spin out of control. I had to focus on another hobby, movies.
I've loved watching movies since I was around 5. My first real love was Burt Lancaster in the Red Corsar. The last decade it has snowballed into actually meeting actors, which has added much joy to my life. I set small goals and when I could actually successfully plan a trip it has turned into one big adventure. Often with unexpected events and conversations. My latest goal was Gerard Butler. Known to his fans as Gerry. Sadly he's become the biggest disappointment in my life. Something I never thought would be possible. This goal grew so big and got so complicated that he has become unhealthy to my quality of life. How being a Gerard Butler fan was part of my pain management

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