Tuesday, October 22, 2013

I want to thank each, and every one of you for reading my blog! Thank you for supporting, and following me this far. Without all of you I would be nothing! I blog not only for myself I blog for all of you. I desire to help you, and in the process help myself. Illness is scary, and many times can leave you feeling very alone. I want you to know that you are never alone. You are never alone in your pain, our suffering, your dark thoughts, or your illness. I am here, and others are here. Please reach out! Never be alone. I hope you all are feeling as good as good can be. Please pop in, and visit me at my new site. I would love to have you! My new website. PLEASE CLICK HERE!

I hope to see you on the new site soon. Much love to you!

Tuesday, April 30, 2013

My New Website

Hi you all! I have worked hard on creating my own website I would like if you all would please visit my site! Pretty please. Despite trying to transfer all my readers to the new site I still am getting about 200 page views a month. I know that doesn't seem like a lot. But that's 200 I don't want to miss. Now it might be 200 different people or 1 person viewing my blog 200 different times ;). But I don't want to miss a chance to help anyone. So for now I have chosen to list my posts on both sites. I have went back, and posted all the old content this far on this site for your enjoyment. But please do visit my new website I put much more effort into that site, and your won't regret it if you do. :) At this time I chosen to not have search engines point to this site per say, but I will leave it open to the readers that just so happen to keep finding it. But please do hope on over to the new site. Please. I hope you all are as well as well can be! And you all are finding chances to laugh. Because hey what do we have left? Live life people!

Cheers, and pass the TP!

Come see me at http://www.illnesssucksfindfunny.com
I have a chronic illness. It SUCKS but I find the funny!

Acceptance Has So Much In Common With Death



It's Not Always Your Chronic Illness



Why Are You So Embarrassed Of Me?



Self Medicating Sure It's Bad, But It Can Be Good


A Tiny flower. This helps teach me patience.
The true size of said tiny flower. Taking photos of objects this tiny requires patience. :)

Fighting For Social Secruity



I Was Born This Way. So What!!!



You Can't Have Good Without Bad


How Are You Feeling?


Tiger Kity could care less what you think. He is gonna do what makes him happy.

I Think I Can. Or Can I?





Here is a white kitty of hope for you :)

Beautiful Bekah. A Fight Against Ovarian Cancer.

Bekah's News Story

You feel a baby grow inside you, and when she is born you look into those sweet eyes. You are filled with nothing, but love for your child. When you look into those eyes you are secretly making plans. As a mother we are always making plans. Her first steps. Her first smile. Her first words. After all the firsts of infancy we move onto the firsts of childhood. You visualize her first day of school. You dream of when she can read you a story. When will she write me a sweet love letter? Draw me a picture? The dreams just keep getting bigger. Graduation and prom. Driving my car? Will she find true love? We dream of our daughter’s wedding day, and her having a magnificent career. We dream big. Oh ya we dream big. It’s these dreams that get us through the hardships of being a Mama. All the “I hate you”, and “you’re the meanest Mom ever.” The joy of being a MOTHER is worth any pain. But never in those dreams do we dream that something may go wrong. We don’t dream of illness, sorrow, and hardships. We surely don’t dream about our kids getting cancer.
Baby Bekah
Never do you dream that our daughter may not live to be a grown woman. You never imagine that you will live longer than your daughter. You never make plans for a terminal illness. And you sure never think your daughter in middle school will get Ovarian Cancer. It’s rare for a young girl to get Ovarian Cancer. Sure you have heard of Ovarian Cancer. It happens to older women. But a young girl? You never dream to stay hours by her bedside in the hospital. Having to learn to flush lines, and change dressings. To be her personnel nurse all hours of the day. I am sure before Bekah got sick her family never gave Ovarian Cancer much thought. She got her yearly checkups, and her Mom did all the right things. She was never sick much. Until now…….
Bekah's smile melts my heart
Bekah is a beauty, and the love of many. She is a young girl whom deserves the best. She has friends, and a family that adore her. She has a Mother just like me. A Mother that would do anything for her baby. Even as hard as it may be she helps Bekah with her Bucket List. Her mission is to bring some happiness to Bekah in her last days. Even if it is painful for her. She hides her own grief to bring a smile to daughter’s face. She puts her life on hold. But you say how could she? I could never do that? But you see she has to. She had dreams for Bekah, and when Bekah became sick she shifted those dreams. She then began living Bekah's dreams. So many things Bekah will never get to do. But what of all the things Bekah has gotten to do? Things that make her smile from ear to ear? So many people want to help make Bekah smile.
Bekah found the strength to walk down the isle on her sisters wedding day. When her mother asked if she could do it she told her mother she would find the strength. What an amazing young lady!
Bekah's mother does what she thinks is best for Bekah. Even when it's hard for her. Including not allowing food in the apartment. You see because Bekah cannot eat food she refuses to eat in front of her. This means she goes without eating many times. As Bekah cannot be left unattended. So her Mother waits until someone can sit with Bekah so she can go eat someplace outside the home. When Bekah lost her hair, she let Bekah shave hers. She loses countless hours of sleep to be at her daughters side in time of need. She keeps up Bekah's Facebook page with updates Bekah ask her to post. Many times she posts through teary eyes. And she has dedicated that she will bring awareness for Ovarian Cancer. She does what she does for Bekah, and she does so with unconditional love. Not a selfish bone to her body. She is a strong women who is doing something very hard. She recently lost her husband, and is grieving him too. Can you imagine? I cannot, and my heart breaks for her, and Bekah both. But I know this, Bekah has one amazing Mama!
Bekah on her sisters wedding day.
Do you want what you think is best for you? What will cause you the least pain? Or what truly is best for Bekah? Please honor her Mother's, and Bekah's wishes. Even if you don't understand. Know that her Mother has done everything for Bekah. If there was a new amazing treatment that could save Bekah she would be doing it. She has done everything she can for Bekah. Sadly nothing else can be done to treat Bekah's cancer. So now she treats the sweet girls pain, and brings some last smiles to her baby girls face. No matter what it takes. Is it hard? You bet so, but she has to. Bekah is her baby. Some judge the family. But not I. What I see is a woman who has to do the hardest thing of her life. Watch her daughter die. Can you imagine? I cannot……….And I will not try to pretend I know how she feels. One never knows how we will react in that situation until we live it ourselves. So do not throw stones. Her mother does what many of us could not.
They all let Bekah shave their heads. What a good looking bunch!
So we can all say “well if that was me I would have done this”, “if they would have done that Bekah might not be sick.” First let me say you can never know for sure how you will react in tragedy. You can’t predict what emotions you will have, or won’t have. You can’t make a solid plan of what you will do. Because when tragedy strikes you are so in the moment you just go through the motions. You just survive. When I had the first stroke we had a plan. Ya did we have a plan. Then when it happened nothing went right, and we didn’t factor in fear. My hubby was scared out of his wits, and his only focus was helping me. He couldn't focus on anyone else he was in shock. You see when you make your plans you most likely are of sound mind, and that is how you can make such a good plan. You don’t factor in fear, sadness, and disbelief. You assume when you make plans everyone will be by your side to lend a hand. So when it happens you switch to survival mode. The days become a blur, and time just kind of slips by. You do what it takes to survive.
That smile warms my soul. Bekah on her sisters wedding day.
So could you do what Bekah’s mom is doing? There is no way to know for sure. But I do know that a Mothers love for her child can make one do some amazing things. Could we be like Bekah? She is strong, graceful, and beautiful? All this despite such a grim prognosis. You can’t say for sure of that either. But please always remember her, and if this happens to you, draw strength from Bekah, and her family. They are just common everyday people whom have been faced with tragedy. They had two choices, to be selfish, and only think of their grief, or to open their hearts, and live for Bekah. They choose Bekah!
They proudly wear PINK for Bekah, and painted their nails TEAL for Bekah.
What do you say? She wants to bring awareness to cancer. That is the least we can do is become aware. If you are reading this promise you will learn about Ovarian Cancer. That you will imprint the signs and symptoms in your memory. So if it ever comes up again you know. If it comes up in a friend you can share the knowledge. We can all learn. This is the only demand this sweet girl has. She demands awareness! Knowledge is power, and we are never too old to learn anything. I know I have learned a great deal from this family. Everyone can learn from Bekah, and her family. So what is it? Are you going to live your life like there is no tomorrow? Or just go on, and assume that everyone will grow to be happy silver haired seniors. Kiss your babies, kiss your partners, and snuggle your pets. Do something you have always wanted to do. Remember in the blink of an eye your world could come apart at the seams. Years of tomorrow are never guaranteed.
Bekah, and her cousin Mason whom also has cancer
So go on get out there, and LIVE! And remember that there is a girl names Bekah who demands peace in your life.
Please visit Mason & Bekah's Facebook page by clicking the blue hyper link Cousins Fighting Cancer.
Please also click the following hyper link for Bekah's Facebook page. Battle For Bekah.
Bekah & her Mama. This is her Mama's favorite picture
If you would like to help out the family please send donations to:
Battle for Bekah
c/o Southwest Nat'l Bank
PO Box 1401
Wichita, KS 67201
Make checks payable to: Battle for Bekah.
Peace for Bekah!

Anxiety Its Not Always In Your Head


Day 11 Putting My Illness Aside To Take A Pretty Picture

My husband, and I planned a vacation. We made lots of plans. We where going to go on a road trip. We where going to see a friend, and then at the end my father in law was coming to visit. We planned to go camping, and riding ATV's on some mountain trails. Late summer its in the 90's or up close to a 100. My state is very humid all year round. Because of the neuropathy, and or issues with my spine as a result of EDS/POTS I don't sweat properly. I ONLY sweat on my palms, head, few random patches on my back, and under my boobs. This is not enough to properly cool my body in that kind of heat so I have wanted a cooling vest for a long time. For this vacation we planned on buying one. So I could join my family, and stay cool. I just want to have fun! But it didn't happen. You know how it goes. Money always finds something else it needs spent on. But I couldn't let that keep me back! I was gonna have fun.
I'm very much an outdoors girl. I would live outside if I could. Just to hear the birds sing, and the smell of the trees. Food on the grill. ATV's, cold beer, and BBQ's. The river, and lake. The sun on my skin. Camping, and bonfires. I hate being confined indoors. I just want to live my life. Do things with my family. Have fun. Be free. Just be me for a little while. To hear the rain on my tent, and crickets at night........To cook breakfast outdoors.
Well things happened. Money fell short. Blah. Blah Blah. You know how it goes. We all been there! Had to tag my truck. Cost an ass ton, but hey I'm thankful to have a nice truck to drive. A year ago I was getting my SUV reposed because I was still fighting for Social Security, and my husbands hours got cut at work. I'm thankful I have a way to pay for the tag! So hubby said we where going to cancel the vacation. I said we couldn't! It would be rude to his dad he already scheduled his vacation to come see us. "But you don't have a cooling vest. You can't take that heat! Camping outside! Are you nuts?" Well then the universe provides..........
The weather changed, and the temps dropped to 70's, and 80's. For the time we planned on being camping, and trail riding. So sometimes you just got to say screw your illness! Put it all aside, and do what you love. And I did. Yes to get a pretty picture. It took me about 45 mins to ride up this mountain to get a picture. On the way up my feet kept slipping. Flip flops, and ATV's don't mix. I had forgot to bring my tennis shoes. I didn't care! Nothings was stopping me. ATV's have spiky foot pegs. So I rolled with it. Took my shoes off, tied them to the utility rack. I also had my hubby tie a bottle water, and my camera on there. Before I left I got hot so I took my T-Shirt off, and wet it with an ice cold water out of the cooler. Put it back on. That cooled me off. Redneck cooling vest. I was going to do what I loved, and EDS, POTS, nothing was stoping me! Did I have a headache? Ya. I always have a headache. Did I care? No. Sometimes you just got to do whatever it takes, and climb that mountain. Even if it is to take a damn pretty picture! You will have that picture forever. Will you remember that you felt like shit on this day 20 years from now? No. So climb the mountain already, and take a pretty picture!
I told my hubby I wish I had a heart rate monitor wrist watch. Because this trail we went on has some pretty hairy places. So I know my heart was doing flip flops. Was I having fun? Every damn minute of it! My hubby would go around a mud puddle, and I would go straight through it. Piss on it. Get a little muddy. When I have my mind set on doing something I do it.
And I just put my illness aside. It's always worth it. Sometimes you just have to be free, and have fun. Put your illness aside. Even if it's just for a short while. Deep down you are still you, and like the same things you always have. So indulge! Do what makes you happy. Even if it's only to get a pretty picture. Those memories last a lifetime! So get out there, and live!
Today I am thankful for:
My iPad. This is how I write all my blogs, and keep up on FB. It may seem petty, but the laptop was to heavy for me. So I kept dropping it as it would dislocate my thumbs. So I am thankful for my iPad that is small enough I don't hurt my hands. And it helps me write all the blogs you read!
I am thankful for the awesome view at my house. I can look out over these mountains, and realize there is more to life than whatever mood I am in. It is truly beauty, and I thank my Creator!
I am thankful for my books! I love books, and hope to one day have my own library.
I am thankful for the weekends. Where I get to sleep all night beside my hubby. You never realize how much you miss things until they are taken away. I am so thankful he works so hard to take care of his family. That my kids get to sleep in.
I am thankful for Sunday breakfast. I don't make breakfast much. If I do it's simple things. But every Sunday the hubby & I both make a huge breakfast for the kids. Today was Maple & Brown Sugar French Toast. I made a bunch extra to freeze. I may have to sit down to cook, but I still can most days.
I am thankful for fuzzy socks. On a cold Autumn night they sure keep my toes warm. Plus they are soooo soft!

Day 8 Suicidal Thoughts In Chronic Illness I'm Not Immune



Day 6 Why I Blog

I've always been an open person. Yet still some people are curious as to why I blog? Why I so openly put my personnel life, and health information on the internet? Some feel I share to much that it's personnel info I should not let strangers know. Some think I talk about my health, and illness to much. That by doing so it will consume me, and eat my brains like a mad zombie. They believe that it makes me depressed, and brings me down. Others love my blog, and see now problems in what I do. So why do I blog?
First off it's not a substitute for personnel contact. Especially if you are family or long time friends. I do not blog to fill you in on what is going on in my life. However you can somewhat tell. You must remember blogging is like TV. We cant edit, and leave things out. So thinking can count on mu blog, or FB for all the info about me? Well of course I don't blog it all. I pick, and choose what I wish to include. I never intended that by being so open on FB, and starting a blog that I wanted people to stop calling me to ask personally how I was. I started a blog, and FB page to help myself cope. I like to write, and not being able to work anymore find myself so bored. So it was a low keep hobby that doesn't require allot of physical demand. And no it doesn't look me into an ocean of despair. The opposite exactly. Keeps me from bottling it in. It's a personnel release. But the real reason I blog is this. When I was first diagnosed I felt so alone, and confused. I myself reached out to the internet for support. So I'm returning that support, and combining something that I had already done since about 10. Write. I told myself even if I could help one person than it would be worth my while. As the numbers grow, and the comments keep coming in it reminds me of just WHY I do it. Sure I talk about it allot. How can I not? The pain from EDS, the crazy BP shifts from POTS, and migraines are with me daily. DAILY 24-7 I deal with this! If you dealt with something so often too you would talk about it also. Illness is apart of me. Just as for some it's their dogs, hobbies, cats, kids, books, TV shows, workout programs, diets, jobs, family, and friends. People talk about these things allot too. Why? Because it's important to them, and they are passionate about it. I have a life, and I promise I live it. Just with EDS, POTS, and migraines. But I do have a life, and I do things to make me happy.
It's not a glorified pity party. I don't need pity. Pity annoys me. I don't do it for money. There are no ads on my blog. I seriously doubt I will ever have any on my blog. I do it to help people 100%. Part of the helping people is also myself. I may talk allot, but when it comes to digging deep I have trouble putting that into words. But I can write it. So I do. When I'm feeling down I can write about it way easier than I can talk about it. It just feels natural to me. I love to make people laugh. So I said I would feel my blog with funny. Because this is how I often find myself coping in my hardest days. Making people laugh makes me happy. I also hope along the way that maybe I can help some of my readers families understand what they go through. Sometimes when you see that others with the same illnesses as your family member you tend to listen better. Often times family members think their loved one is over reacting, faking, or playing on their illness. When you can show them 'hey this happens to her too. All the time.' I find maybe it can help some. It helped me in the past with insomnia. Showing my husband the many others online with EDS, and POTS they suffer from insomnia too. It made him realize it wasn't just me not wanting to sleep. He realizes that it was a component to EDS, and POTS. So hey he needed to just try, and understand it as best as he could. And telling me "just go to sleep" wasn't going to work.
I will never change for anyone. My blog reflects me. It contains profanity because I cuss. It refers to poop allot because I talk about poop allot. It has pictures of toilets because I find them funny, and I can't say the word right. I say it turlet. So do allot of people in my family. My blog is mine. My personal space. To be me. Not fake. I was asked to remove the profanity so it could be posted on certain places. But cussing is me, and I will not change my blog or the way I write for anyone. That profanity gets me through my days. You don't like it I don't mind. There are plenty of blogs for the easy to offend eyes. But in my experience most people with chronic illnesses use profanity. Some rarely, some allot. And if you don't that's cool. But I do. They are just words to me. I may say allot of 4 letter words, but I do allot 4 letter things. Like hugs, love, cook, sing, fart, poop, kiss, walk, and look. So I balance myself out.
I blog to encourage. We all get discouraged at times (myself included), and reading something uplifting is helpful in my case. If I know that someone as sick as myself can do something than I probably can too. There are many blogs I read for laughs, some for good information. Some I just plain enjoy. But I always know on a down day I can be uplifted by others words. So I hope to be that to others. Sometimes the computer is all we have. Epically when you are very ill, and it's hard to get out. It's not that we don't want to get out, and about. Leaving home for us is complicated. Normal people just don't get us. So many of us stop trying to talk to our families, and friends about our issues. We give up on normal friendships as we have so many limitations. It's not depression or withdraw it's coping. We get sick of being rejected. There is nothing like when you are hurting, sad, and upset you are looking for certain words of support. When you don't get them it leaves you more down than when you started. We all need to hear "I'm there for you", "you can do this", and we like to reminded that "we are fighters". When a loved one doesn't say these things to us. We get discouraged. When you are normal it seems so petty that we need so much attention for what you feel is so little we do.
Normal people look at our lives, and think what is so hard? What is it she does all day that is so taxing? Well if you are normal than the answer would be allot of things I do aren't hard. To you a normal person. But to me taking a shower is hard. Cooking is hard. Cleaning is even harder. Being a Mom doing Mommy things takes me twice the energy. Think about it? If I'm sick in bed who cares for my kids? I just have to make do. I can't say "sorry starve". So some days getting out of bed is hard! So I need encouraged. Told that I'm doing great. That I can do it. So in return I share my life so that you all know that YOU CAN DO IT TOO. And I'm right here doing it with you. We will fight together.
In this world of this thing call EDS, POTS, and Migraines life can be tough. But hey writing these posts keeps my mind off the pain. So here I write, and I will continue to do so. Just to know I help someone, and make some of you laugh. Now off I go. My ass is falling asleep on the John. So gotta wrap this up. Yes I blog on the John. Pretty damn often. So here is to many more! Welcome to my world. I'm happy to share it!

Today I'm thankful for:
my husband
good sheets
corn bread
a good cigar


Day 4 The Hamsters In My Head

He may not be a Hamster. But he is Guinea Pig names Spanky!
So I had to post a pic of him. He belongs to a friend.
From the time I was a kid I was always doing something. Always busy, and on the go. I could never sit still. Always talking too. My brain always had something to say. Plans to carry out, and was full of ideas. Never lacking in direction. Most times I was only along for the ride. I was pulled along here, and there. Doing this, and that. Rarely ever one thing at a time. Where was the challenge in doing only one thing at a time? My brain just NEVER SHUT UP! Even when I wanted it to it didn't. Always these ideas, and plans! So it was easier just to follow.
When I was in Middle School my teacher had these hamsters. They where forever running on their little wheel. Always running all hours of the day, and night too I'm sure. Their little wheel made this annoying squeaking sound that could only be heard when their was rolling very slow almost at a stopping point. This didn't happen very much as they only stopped to poop, drink, mate, eat, and sleep. I was never there during the time they slept so they ran, and ran, and ran! But when they stopped SQQQUEEEK! That squeaking sound was so loud in my mind it was like a Black Cat firecracker! Yet every time it happened sqqqquuuek I would raise my head, and glare at them I would be the ONLY student that noticed! Did I have super sonic hearing? Spider senses? NO! Annoying noises piss me off! So it was then that I started to refer to the rushing that goes on in my head as "the hamsters in my head". As I related to these hamsters so well. Always running none stop. And if, and when they stop they make that annoying squeak sound that drove me nuts! It reminded me of when a group of people will be talking then everyone stopped, and there is that uncomfortable silence. When they stop running, and you hear that squeak. If my mind ever shuts up it's just like that. That uncomfortable silence when everyone stops talking at once. Sqqqqueak! Plus I only slow down to poop, eat (sometimes), drink, mate, and sleep. And I'm like hamsters too I don't sleep a whole hell of a lot. And often I even poop little round balls. And I have tons of hair.
From Middle School on The Hamsters became a part of me. I referred to them often, and all my friends would giggle because the analogy fit me perfectly. They knew how I was always the thinker. Always something to say, something on my mind, and something to do. Ideas of things to do later. And I always had some kind plan brewing. Back then I was famous for saying "I got things to do. Places to go. People to see." I had so many dreams I was going to accomplish. A list of things I was going to get done. Getting sick was not one of them.
Even though from the time I was a kid I knew something was wrong. Things didn't add up. I knew something was wrong. Something didn't fit. I just didn't know what. But then on the other hand I didn't want to be sick. This both helped, and hurt me. It hurt me in the fact it delayed my diagnoses. All the time doing further damage to my ligaments, and joints. It helped me in the fact that I got to accomplish some things I'm not sure I would have done had I known about EDS/POTS back then. I had allot fun. I sold my wild oats so to say, and that I don't regret. I had fun in my younger days, and that gives me many good memories. It also makes for me being a content old lady. I don't wonder what it's like to party, or have fun. I did it.
So then after I'm diagnosed I found myself lonely, and sad. Confused, yet relieved. I desperately wanted to meet others like me. Yet with two rare illnesses, and living in a way small town someone suggested Facebook. As it was highly unlikely I would find someone locally with POTS, or EDS. So I gave Facebook a try. I quickly found Facebook support groups filed with people just like me! People that wanted to help, and encourage me. People that understood my brain fog, and fatigue. They understood the lack of family understanding. Could it be? Others just like me? Yes it was so. So slowly I came out of my gloom. And realized that I could go on. I could possibly even make a difference. Sure I was still sick, but I still had talents. Certain things I could still do. Sure I did them slower, and had to double check my work but I could still write. I could still make others laugh, and hey I was a likable person. And I told myself if I could help even one person than all my efforts, blogging, Facebook posting would have been worth it.
So it was then I decided that maybe I should help people. Because no one understands illness as much as people that are ill do. We all wish that we could make the normal people understand. Our families, our communities, and our friends. My Hamsters still think they can conquer the world. But sadly my body cannot keep up with my brain anymore. So this is what confuses people. I have the whole "you don't look sick thing", and they whole "you don't act sick". Well first of all have you ever heard that saying "you don't know anyone unless you live with them"? That is how it is with me. Sure I look like crap some days. You just likely don't see me on those days. But my husband, and kids do. You aren't here when I get pist off I can't add simple numbers or have to spell check anything I write 6 times. You read these blog posts, and may not realize they sometimes take me days to write. I sometimes can only muster a sentence or two at a time. You don't see my little freaks outs, or my fits. The tears, and you aren't hear to see me rock back, and forth in pain. You only see what I let you, and only know what I tell you. I have my reasons. I wan't to be funny not depressing. Even though ya my life is pretty damn depressing sometimes. DUH! I mean how could anyone have EDS, POTS, and the chronic DAILY headaches like I do, and not get fed up sometimes. Sad, and pist off? It wouldn't be normal if I was all tralalalala all the time. As is it's not normal to be all doom, and gloom all the time either. I just choose not to write about the nasty stuff. Expect poop. You will hear about my poop I promise. But if you ever want to know. Just ask my hubby. He will tell you that I'm not all Peaches, and Cream to live with 24-7.
Some days I barely exist. Barely speak. You don't see that because I don't let you! That doesn't mean it doesn't happen though. The days spent in bed. On the couch moaning, groaning, and saying more cuss words than any bad movie. But you have to understand all the while my brain is still going 100 miles an hour. But just because my Hamsters think they can make me do something. Or write a blog post every few days, because I sure would like to. My broken body just can't keep up. So I have had to learn to ignore all my ideas, and write allot of them down. I do the very important things first always. Write about what I think is most important first. Do the most important chores, and errands first. Because if I get tired sooner than planned I want to have the most important things done. The other things just have to wait. Life is to short to try, and fit up others expectations. You just have to do what you think you can. When you can. Take care of yourself in the mix. Because you just have to.
Today I'm thankful for
Jolly Ranchers
My Kitchen Aid Mixer
good books
my dog

Day 3 A Poem For You! Bear

Tonight on day 3 I am going to post a poem. I wrote this soon after my Dad died. I had forgotten about it. You see I write poetry allot, and write it on anything I can find. So I often find them later. Forgotten about, and sometimes are a sweet surprise. Often they are half finished, and I will finish them. In my house I have about 20 spiral notebooks. It's crazy. I will loose one, and get another. Then write stuff, and lose that one. Repeat. Repeat. You throw in the fact that my kids too all have these spiral notebooks too. Ya crazy. At the beginning of the school year I buy about 30 of them when they are a dime. So it's to convenient to just say "oh well get another". Ya well that is how I lose so many things I write! I'm still fairly old school, and write allot things in pencil, or pen. Especially my poetry. Because it always comes to me so random. Don't ever ask me to write a poem planned. Probably won't happen. I have been saying that I am going to put a poetry section on my blog. Well here is poem #1. It needed finding I guess. Especially right now in a rough time in my life. And that day too. I had to go shopping, and ya that is hard for me. Not only how am I going to feed my whole family on my tight budget? Can I stand that long? Will my kids behave? Will there be sales? If I feel bad will there be a wheelchair? So it's stressful. So I needed to find that poem. That day when I just went to get a notebook to make a grocery list. Like my Dad telling me things will be okay! I remember how hard writing this was for me. As I don't normally write them that rhyme so much. LOL
Today I'm thankful for
my kids
my ability to help other sick people through my writing
spell checker
ice water
A strong man with fists of steel.
You didn't take my crap, and didn't tell me how you feel.
You kept me in line, but you let me heal.
You where strong, firm, and mean. Hell you had to be.
Because I raised hell, and chaos. No one could make me see.
You had the strength of many. Maybe three?
You understood me, and didn't take my crap. You knew the deal.
Always told the truth never lied. You kept it real.
You waited so patient until........
I figured it out, and learned my own way. Nothing is ever free.
The School Of Hard Knocks is where I found my key.
It's you I thank. Because of you I am me.
To your friends you where a tough guy they called Bear.
Not to me. Just a regular guy who always said "take care".
A man despite all my shit was always there.
I respect you, and thanks for giving me a little shove.
Thanks for teaching me that I deserved unconditional love.
Now I know you are someplace high above.
A golden Harley you ride. The exhaust I hear everywhere.
A long white beard, and your beautiful silver hair.
No worries, so carefree. Surrounded by so many that care.
For making me a women you can be proud. You where such a good Dad.
Losing you has been so hard, and sure makes me sad.
You are with me everyday. I have your memory, and for that I am glad!

30 Days 30 Posts A Day Late National Health Blog Post Month

So I read on another of my friends blog about the National Health Blog Post Month. That she will be writing a blog post a day. I thought to myself at 2:30 am two things. The first was this is great! I should so do it too! I should write a post right now. It would be a little late, but it's still day 1 I can catch up. Thought two. She is damn nuts! She has brain fog, chronic fatigue, and she struggles with Dysautonomia just the same as I do. Plus she is just like I'm. She is a mother, and wife first. Even when we don't feel like we are a good wife, and Mom hubby, and kids come first. So we often don't have energy to write. As what little energy we have is spent on our families. Then there is getting our Swiss Cheese Brains to cooperate, and not keep wandering off to LaLa Land. That is a task of its self. So ya you guessed what I did next? I finished reading her blog post, and went to bed. Snug as a bug in my cozy bed.
My doctor tells me to stop reading, playing with my iPad, and phone in bed. Even though I tried to sleep I couldn't stop thinking about this blogging thing! My brain wouldn't SHUT UP!!!! This exactly what my lovely doctor warns me of think so? Ummm ya! This is why he says to only sleep in my bed. But I was to tired to write anything, and my eyes where all hazy from a migraine. Anything I wrote by then it was 4:00am would have consisted of nothing more than rating bedsheets, popcorn, and anything poop. Because when all else fails I rely on poop jokes to save me. So I opted to wait until a fresh new day.
Heck ya that in itself was a day! My preschooler had a field trip. That they did not warn me would include about 5miles walking. My knee was dislocating, and my ankled did twice. It got to almost 90 outside even though it's November. Then this field trip included said games being played with adults. Well allot of standing. 2 hours worth, and I have POTS! They had none out there. I took one bottle that drank in an hour. As us POTSies drink some massive water. So I was HOT! Heat, and me is not good as I don't sweat on 75% of my body. But I can't let on all this to my little man. He is there to have a good time so shall I. I mean who wants to call attention to themselves? Not me.Not for a weakness i guess. I know I know it often bites me in the butt. My little man is an EDSers too, and his knee hurt also. Even though he said "no mama it doesn't" I think if he thought he said yes I would take him home. Mommy has medicine in her purse if he needed it, but he insisted he didn't. But as soon as we got home "MOM my leg hurts!" But he had a good time, and I enjoyed taking him. I would do it again. My best friend is in town for his birthday, and I made him his favorite dinner. Even though I was tired. I don't get to see him much.
I even had to grocery shop. That in itself wears me out. I got so upset when I didn't have enough money for my meds. On top of it all my hubby got told last week his health insurance is going up. They also raised the deductible, and out of pocket maximum. They didn't give any of the employees a cost of living raise. Only a bonus that gets gift taxed at almost 50%. This was already after going to a every other 4 day work week also. Which resulted in about a 1000 pay cut. Yes I'm happy he has a job. It could be worse. But all this news had even happy go lucky me pist off. Crying in my lactose free milk.
I didn't know what to do? Where to turn? How do we manage? I pride myself in having a somewhat funny blog, and Facebook page. I try not to post sad, gripy melodramatic stuff. I know it happens in illness, and I by no means am immune I just don't want to blog about it. There are enough people who do. I want to bring happy into your world of chronic illness. Even when we feel there is none left. So as the old saying goes when you don't anything nice to say don't say anything at all. So when I'm silent my world is crap.
So here in my world its kinda shaky right now , and here is this 30 day blog thing. Also so many people during this month post things they are thankful for as it's the month of Thanksgiving. So I got an idea. I thought I will combine both! Another good friend told me how she has a notebook, and everyday she writes a few things she is thankful for. She tells me that lifts her spirits. I will blogmyself out of this funk, and maybe help someone else too.
What do I have to lose other maybe this dark cloud over my head? Because man this doesn't make for good stories, poems, or blog posts. So 30 days here I come!
Today I'm thankful for:
A nice home to live in with an amazing view.
My best friend. Whom came to visit me for his birthday.
I'm alive.
Being able to take my son on his field trip.
My 4yr old EDSer took this. He knows what I like. He also knows how to make his Mama laugh.

The Zebra Chair

The Zebra Chair

There it sits. Like a giant green monster. Something you fear. Just the same as the Boogie Man when you where eight. Or the monster that chased you in those scary night mares you had as child. It just creeps you out! You don't want to go near it for being in it's presence it may eat your soul! It's so intimidating, and over powering. Something that is nothing more than vinyl, metal, and plastic is so hard to welcome into your life. So your reject it. You say it's not time. I'm not ready. I'm okay. Pfhhhh I don't need it! I'm not that sick. I can manage on my own. I do okay without it.
Your doctor, probably your partner, friends, and some family members have been suggesting you get one. They say it's time to get a WHEELCHAIR.You decline. You are in denial. You go through the same denial process of when you first where diagnosed. 'Am I that sick?' 'I'm not that sick.' 'Screw this illness, I don't need this crap! Wheelchairs are for old ladies, and people that are paralyzed.' 'I can manage fine.' 'People will stare at me.' Ya ya ya I said all the same ol shit too. Don't think I didn't! And then add some many more excuses people! Oh man I had every damn excuse in the book of why I DIDN'T need a wheelchair. Yet deep inside I wanted so bad to be able to do more things with my family. Yet I had no genius plan yet up to that point how to do so?
I longed to spend more time with them. I wanted to be able to shop with my daughters again. For more than 10 minutes, and more than just a department store. I wanted to go to the mall, and people watch again. I wanted to take walks with my husband again outside in the cool breeze. Yet I knew I can't walk, or stand much. I wanted that security that if I had one of my hemiplegic migraines I could still go someplace. Yet I denied all this. I was okay! I didn't need a damn wheelchair I said! "people will stare, at me". "They will think I'm not really sick, and that I'm faking" This was my primary fear. I worried how would I get it in our car? In our house? Inside stores, other peoples houses etc; The list went on, and on. Yet my days being stuck in the house got more, and more. I was watching life through the window of my house. Life was passing me by. I was missing things! And my kids, and husband continued to carry on without me. I couldn't let them miss out on life because I was sick, and couldn't walk or stand much. So I got left behind...........
My doctor suggested I get a wheelchair. He advised one because of my POTS, the dizziness, and my hemiplegic migraines cause one sided weakness. I declined. He left it as "well let me know if you get ready for one" I did however accept the handicap placard finally. I was taking baby steps. I found myself staring at wheelchairs. I asked a few friends about them. They said "ya they give me freedom!" But yet I was still so scared! And I feared a wheelchair so bad. At that point I feared a wheelchair like the Boogie Man. I felt it I got one it would eat my soul! I guess I feared if I got one it was like I was giving up. That it was the final straw of my healthy days. That getting a chair I was officially all the way 100% sick. That no more of me was healthy. That I would no more be capable of doing any good with well anything............ That the any bit of my prior life would officially be gone. Like poof! Like a giant genie would come in, and steal it the minute the wheelchair would be delivered.
Then I had the stroke. There I was with left sided weakness, and I couldn't walk. So I had no choice. So the choice of a wheelchair, and walker got made for me. Something so surprising happened. No one stared at me! Other than to talk to me no different than they do now. They didn't judge me. Or yell at me, or harass me. The day after I was released from the hospital I went prom dress shopping with my girls for their Senior Prom. I wasn't missing that for the world! They gladly pushed me form store to store in the mall. Even my boys too. They didn't mind. My kids where all just happy that Mama got to go someplace with them. We went shopping, we got girls dresses, we ordered my son a cookie cake for his bday. We ate at food court, and had a cookie at cookie shop. I could have never stood that long!!!! So it was a great day! People where so nice to me. They didn't care. My kids didn't care. My kids where just happy I was there!
So then I was deeply saddened I didn't do this sooner. That I had waited so long to get the wheelchair. I wished I had done so sooner. This chair was no Boogie Man! It was my friend! It saved so much energy, and even provided a place for my girls to hang their bags. My boys fought over who got to push me. They where in no way ashamed of me being in that chair. They where full of joy I could be there with them. My girls where happy I didn't miss a happy moment in their life. My hubby, and I even got in some people watching while kids where in some of the stores. This is something we like to do in the mall. You see some interesting people in the mall I tell ya.
So a few weeks later I was staring at my chair, and I remembered seeing this tape in the store, and I said I'm going to make my chair cool. So my hubby, a neighbor, and I all drank a few cold ones, and 6 rolls Duct Tape later Zebra Chair was born! Now when I roll in Zebra chair people no longer see me. The see my chair. I get so many compliments on my chair! Then I tell them about EDS, and why it's Zebra. I wouldn't be me to not have a weird chair. Oh no! So meet Zebra Chair!
So if you are faced with the decision to get a wheelchair then do. Chances are you need one, and are in denial! I say to you "SUCK IT UP, AND GET THE DAMN CHAIR". Stop with the excuses, and the I don't wannas. Just do it! Think of what the chair will do for your life! The energy saved! And hey who gives a shit what other people think of you! It's about what you need, and how you feel. If you get your chair, and someone says something just say something back. Or flip them off. Or just roll on, and forget it. These idiots are not anything. Think about it if they are insulting a disabled person they must lead a sad pathetic life. So just keep rolling on.............
Do what you gotta do with whatcha got! It's all about you, and taking care of you. So you can better your life. So you can feel better. Even if for just a little bit. So think about it. If I can roll in a chair when needed. So can you!
Enjoying the sunset in my Zebra Chair
The beautiful sunset on our littlemountain