Epiphany Quilt

Like so many folks that have chronic illness I have hobbies. Hobbies to keep me focused. To make me feel important, and mostly to distract me from my pain. It is nice to see something from start to finish. To be able to say I DID THAT!! To be able to say to yourself, and to others “I made that” is one of the most rewarding feelings ever!! It helps my confidence to know I CAN still be productive. With Brain Fog, pain, low energy, and my lack of spoons some days, that I can still be productive! That parts of the old me do still exist. It reminds me that I am not just my illness. I am a person with an illness, but my illnesses are not my only form of existence. I can still accomplish things. I can make others happy with my many talents.

I am still me after all! Sure I’ve changed! Sure I have limitations. Yes I have several incurable illnesses. Yes I’m no spring chicken anymore. Sure I’m slightly different, but deep down to the core I’m still me. I still have hopes, and dreams. Likes, and dislikes. I still posses many of the same talents I always did. I still have a creative mind, and a giving spirit. Most importantly I am still valuable! I am still capable of being productive, and accomplishing things! I can make others happy with my talents. I can use my talents to benefit charity. I can use my talents to make the very little cash flow I have go further. I can use my skills to make special things. Things that will be enjoyed by others.

Who doesn’t love a homemade gift? I can take a few dollars, and turn it into something worth so much more. Maybe not a ton of money dollar wise but lots on the sentimental scale. Everything I make is full of love! I am sure it’s similar for many ill folks that craft. I can use my tiny budget, and turn that into a charitable contribution that will help others in need. That will make others feel special. Little girls feel pretty. I can help a grieving parent in one of the most saddest times of their life. I can make them feel loved. I can provide my own family with heirlooms to last generations to come. I can provide my children, and grandchildren the comfort of a soft blanket.

A few weeks ago I decided I needed to focus on my low-key hobbies. Hobbies that I can sit down while doing. At least until this dizziness gets all worked out. My symptoms are at the worst standing up. I will never not love photography, or hiking but at times my legs don’t cooperate, or my heart doesn’t feel standing is important.

Soooooo that led me back to my love of sewing. My love of sewing led me to my love of quilt making. Quilting has made me test my limits, and at times forced me out of my comfort zone. It also reminded me how much folks love quilts! They love homemade things in general, and I am creating heirlooms for years to come. I’m creating memories, and sharing my love with others.

As I have been working on a quilt for one of my sons I had an epiphany. That epiphany led me to thinking about life. Thinking about life led me to thinking about love. About doing the things I loved, and how having self-confidence is so necessary for everyone. Especially so for people with chronic illness that can no longer work full-time. It made me realize once again how not being able to work has damaged my self-confidence. It’s made me feel less valuable, and feel rotten for not being able to provide financially for my family like I used to. I miss making others happy, and getting paid to do so. I miss being complimented on my skills, and talents. I miss feeling productive, and efficient. I just miss it!!

The quilt top is done! All my life I have had an (both eyes) astigmatism. That can make straight lines difficult!! I don’t see them as others do, and it’s almost impossible to follow them straightly. My eyes are getting worse as I’m aging. BUT they’re getting worse at a much much faster rate due to Intracranial Hypertension. IH can cause blindness. That’s one major reason folks are shunted. To try to save their vision. It’s defiantly effecting my vision! Then add in my numbness in my extremities from Neuropathy, pain, brain fog, and the fact I sew mostly with the hand controls, it’s surprising I still keep at it. Then there is Brain Fog. Then my lack of confidence in my skills given restrictions brought upon me. I also forgotten what it was like to feel accomplished. I just didn’t feel good for a long while. But I didn’t let all that stop me.

As I was working on the quilt top I was disappointed my rows didn’t match up perfect. I was bummed that I kept making mistakes. Then I “gave up”, and decided I would just make the rest of the rows not line up on purpose. I would cover up my “mistakes”. That this was just how it was going to be. Crooked, and not perfect. Flawed, and not correct. It wasn’t how I wanted it to be. It wasn’t going to look like how all the quilt books said it should. It was what all the quilt video tutorials said it shouldn’t be like, and NOT to do it like. It would be less desirable, and well not correct. It would be a sad sight, or so I thought. I thought others would scratch their heads, and ask why?

Then I had an epiphany. You can plan, and plan some more but often things happen in life that are not so desirable. We just gotta roll with it, and persevere. We can keep trying to fix, and repair everything with the end result is still going to be flawed. Life isn’t always perfect, and sometimes we need to things differently. That we must find a way to work within our limitations. Limitations doesn’t mean not at all. Limitations doesn’t mean don’t do it at all. It means find a way that works for you! Being disabled doesn’t mean not at all. Or that you get a free pass to not try at all. It mean find what you’re able to do, and make it fabulous!!

We can embrace our flaws, own the mistakes! Flaws, and mistakes mean we’re human!! Life isn’t always perfect! Never stop learning!! All while moving forward, and not giving up!!

It’s okay to feel discouraged, maybe even disappointed. But it’s not okay to give up!! We can own the flaws, and realize they’re part of who we are as individuals. We should not do something because we’re not perfect at it. Because we are scared to make a mistake. Because we have a disability that brings certain limitations upon us. One shouldn’t stop what they enjoy just because unplanned things happened along the way, or because they made mistakes. Or that things didn’t turn out exactly how we envisioned. Some of the best creations are a result of mistakes made.

I mean how many quilters do you know that make quilts with so many mistakes on purpose? That make a quilt so full of flaws, and errors but didn’t mind? Me! You know one wacky quilter. You now know one that doesn’t always have crisp perfectly straight lines, and perfection all wrapped up in a cozy blanket. Instead you have upon you a sick women that kept going. That was determined to not quit. I acknowledged not everyday would be easy. Not everyday would go as planned. I wouldn’t always be okay. I wouldn’t always accomplish what I thought I should. But I kept going, even when it wad hard as hell. You can too!! I’m right there with you!!

I quickly then came to realize that another person’s happiness mattered more than being textbook perfect. That making one happy makes me happy. That giving to charity makes me happy. Giving alone makes me happy. I like to help others. I am one that isn’t scared to be different, and not always abide by the rules. Yet after years of being told those are bad qualities to have I have realized that is the furthest from the truth!! It’s okay to be different, and some rules are made to be broken. Some rules are merely just suggestions. Suggestions you don’t have to take to heart. Follow your own heart, and craft your own way!! Be unique!!

Besides I like the quilt better this way. Next time I’ll embrace my disABILITIES and roll with them. Life isn’t about perfection!! It’s about joy, and making memories!! This quilt is full of memories! It’s made from shirts from my boys. The backing will be an old flat sheet. I don’t have the fitted sheet cuz my son painted it when he was a toddler. Then tried to cut then stain out. 🙀😬😜 💚 The batting an old blanket used many times camping together as a family. It’s totally a memory quilt!! And many good memories also contain mistakes. Cuz well life happens!!
NEVER GIVE UP!! You are important!! You have meaning!! You are loved!! 💜💜💜💜

NO!! Not the C Word!!

Please folks for the love of nitrate free uncured bacon never say to someone with a chronic debilitating illness “well at least it’s not cancer”!! Or “at least you don’t have cancer like ______”.
Cancer is some bad stuff. Cancer hurts, and destroys lives. Cancer is painful. Its hard on families, loved ones, friends, and caregivers. A cancer diagnosis effects ones whole tribe. Cancer can alter ones appearance. Cancer is heartbreaking, soul crushing, a financial disaster, and can be fatal.


BUT…..cancer is researched. Cancer can be cured or removed. I understand not all are cured, but some are. Cancer is understood by doctors. Doctors don’t ask what Cancer is. There are many drugs specifically designed for Cancer. There are many doctors that treat cancer. Cancer has whole clinics, floors, practices, hospitals, programs, and trained personnel that treat cancer. Cancer gets press coverage. Businesses hold cancer benefits. Cancer sparks a giant desire by thousands to fight for a cure. Their is funding available for cancer. It’s never enough but it exists. Family members don’t doubt you if you have cancer. They don’t say you’re faking, and being lazy. They don’t tell you if you’d quit eating gluten your cancer would go away. They don’t blame your cancer on being fat. Cancer patients don’t get told cancer is all just anxiety, and depression. If they would excercise more their cancer would be cured. I understand what cancer is. I dislike cancer!! Cancer doesn’t discriminate. Cancer sucks!!!!


But…..I also dislike illness! It is so HURTFUL to say to a sick person “at least it’s not cancer!” Many times we experience many of the same things. We feel the same way at times. Hopeless, lost, tired, angry, sad, and desperate. Likewise our tribes suffer too! Our bank acts suffer. These illnesses sometimes alter our appearances. Make us feel guilty, and to blame. I even know plenty that utilize the same treatments. Illness doesn’t discriminate.


I can’t be cured. Neither can many of my fellow Zebras. Yes many of the illnesses can be fatal. They have been to many others. But many times without warning. Many don’t get to say goodbye, cross things off a bucket list. They get no warning. One day they’re just gone. Poof just like that, gone.
My dear friend was joking with me the day before she passed. Then poof she was gone. Poof just like that many are left missing her, including me. Many Chiarians & Intracranial Hypertension suffers lose their hair. Many folks with Ehlers Danlos Syndrome have ports, feeding tubes, daily IV’s, oxygen, and suffer nausea, can’t eat, require medical equipment. Our Med cabinets runneth over. Our bank accounts are empty. Illness is exhausting!


No, I don’t have cancer. But please STOP comparing. An apple isn’t an orange, and an orange isn’t an apple. But they’re both fruits. Some have apples, some have oranges. Some have both. Some will get an apple or an orange given to them without choice. Some will never experience the taste of either one. But in the end I admit I’m guilty of wanting an apple when all I’ve got are oranges. Other times I’m stuck with a basket of limes, an I’m all out of sugar.


It’s all illness, and sucks. Being made to feel “less sick” doesn’t help anyone at all. Different folks, different battles. You don’t live with me. You don’t  know my daily struggles & battles. Only 1 person does!! Think about that! Only one person knows all of it, and they’re good at keeping secrets.
For every complaint I make there is likely 99 more on my mind. 99 more issues I’ve kept quite about. 99 more things I’ve faked my way through. 99 times I just didn’t want to talk about it. 99 people that don’t want to hear it. 99 times I’ve faked a smile to benefit others. 99 times I’ve cried alone. 99% chance it’ll all happen again.

Everyone handles this journey different, and that’s okay!! Please never downplay ones individual battles. You never truly know what kind of battle they’re fighting

Think before you speak. Would you tell a lung cancer patient “well at least it’s not Ehlers Danlos Syndrome”? No you wouldn’t!! If you would not say something to a young child, in this case a sick young child, don’t say it at all!! To anyone, including yourself. This helps me decide if comments are helpful or hurtful. Maybe I don’t understand how that person feels? Or what they’re going through? I can still be compassionate, and say something nice. Or say nothing at all.

It’s not hard folks!! Be nice to one another! And if bad thoughts come to mind keep em quite!! Keep them to yourself. Keep those thoughts quite until you can work through them in a positive manner. And, PLEASE STOP COMPARING MY (or others like me) ILLNESS TO CANCER!!!!


I was born with this mutated dna, and yes I’ll die with it too. I just don’t know when it’ll be! How it’ll be. Why it’ll be. Make today count folks!!

Please for the love of nitrate free uncured bacon don’t let the words “at least it’s not cancer” be the last ones your chronically ill loved ones hear!! Or any similar rude remark!! If you’re guilty hug them, and apologize!! Remember today might be the last!! Make things right, and be kind!!



Stepping Out Of My Bubble


This frog is tiny………….IMG_4241.JPG

I wanted to thank you all so much for reading my blog! There are some pieces I am hesitant to post. Especially the ones about depression, sadness, struggle, and suicide. I said when I started this blog it was going to be uplifting, and positive. That I was going to make people laugh. I hide behind my own sadness at times, and I sometimes find myself trying to be a little to badass. Then a reader suggested I post these things! She had contacted me to let me know how my words helped her. We had many long conversations. She admitted to struggling with depression, and acceptance since her diagnosis. I shared that I’ve been there too! She was shocked. Regina sad? Really?! I assured her that she was NOT ALONE! Many others including myself felt this way at times. It’s normal to feel this way at times! We just can’t live on Sadness Island 24-7!

It’s okay to lay low and hide sometimes………….


She then suggested that I write about these experiences. She said my strength, and humor helped her cope. She said knowing I felt some of the same things (depression, anger)that she did helped her cope even more! She was 100% sure it would help others too. People needed to see all of me. The me that sometimes gets sad, depressed, angry, resentful, struggles, questions life & my purpose are part of me too. These emotions and feelings are part of me all the same as my strength, positivity, humor, and motivation are part of me. Yes sometimes things are hard for me too!

I was still a little unsure how this would UPLIFT people?! How is making a post about sad things going to uplift people?! There are tons of sad crap on the internet to read! Tons of other sappy blogs to read. At the time I was helping a handful of people combat depression. All these people had one thing in common. Each one had a chronic illness, and it just hit me! This is something that needs to talked about! This is something that is a huge part of the chronic illness community. I don’t EVER want my readers to feel alone! So I decided to write (publish)a couple posts of about really sad stuff. True stuff. Stuff that is often the reality of people with chronic illness. Mostly I was just honest. I was honest even though it was very hard for me! It was hard to take people to my Dark Side. My pride said ‘NO NO NO NO!’ I did it! I just kept thinking of why I started this blog in the first place.

TO HELP PEOPLE! Even if its hard for me I want to help people!

I took a plunge, and opened myself up even more.

Then something amazing happened! I received an outpouring of positive comments, texts, private messages and even a phone call. I didn’t expect that to happen! I have no regrets writing those posts now! I was glad that I decided to let people in my “bubble” a place I rarely let anyone come inside. A place I keep all these private things. I spoke of my private emotions, and it was a very hard thing to do.

I felt I had to because I knew that so many others where feeling the same way too. I was again reminded that I’m not alone! That I need this blog, and my readers as much as they need me. I had many people thank me for writing these posts. Some told me that they where thankful they where not alone. That they are no longer ashamed of the melancholy feelings they had been having. They thanked me that I helped them realize there are things to live for. That yes it’s okay to be sad at times but you still have a life worth living. And if you need professional help for depression don’t sweat it! That’s what professionals are for. No shame in seeking professional help! Yes we can have a good life even though we’re sick!

Yes we struggle, but you can rise above all the hardships

! You have purpose! Please remember that someone out there is feeling the same feelings you’re. They have experienced these feelings too. You’re NOT ALONE! Please reach out, and talk about these things! I know I am going to try my hardest to keep talking about these things. But please don’t be shocked when I tell a poop joke in that same post. Humor is just how I cope.

I had a few people tell me that they where having a bad day, or week, and I helped them remove a burden from their chest. One said it would help her family member understand it wasn’t “just her”, and that this wasn’t something “all in her head”. These feelings we feel are very real! Yes others go through them too! This is exactly why I blog! I always said I wanted to help at least one person. When I help more than one I feel I have done my job! It motivates me to write more! THANK YOU ALL! I have meaning to post this post for a very long time now, and I apologize that it has taken me so long.

Sadly suicide, suicidal thoughts, depression, and sadness occurs often in people with chronic illness. Especially those with chronic pain. We hear about it often. Most of us know someone dear to us that has taken their own life. Maybe we struggle with these thoughts ourselves? Either way it’s a big problem in the illness community! It remains the most searched terms for my blog. It is remains a frequently searches term on Google. People are searching these terms DAILY! It’s nothing new, and is not going to change any time soon.

Eventually we have to come out of hiding, and face our challenges. If this tiny frog can do it so can you!


My challenge for you is this. If you’re depressed to reach out! Reach out to a family member, friend, a support group on FB, online friends, a partner, or even me. There is no shame in these feelings, and someone will understand. Someone will listen, and someone will be there for you. The only shame is NOT reaching out!

If you’re not sad, or depressed make a plan of action. Write down some things you would do if you found yourself in a situation that you felt helpless. Write down things that make you happy. This way if you’re having a “I hate everything” day you can read this, and be reminded that things really do make you happy. List people you can talk to in your time of need. Always have a plan because you never know what might happen. Being prepared means you will be one step ahead.

Lastly every single day do something that makes you happy! Different things make different people happy. Do these things. Never underestimate how small things can make a big impact in your mood. What will you do today that makes you happy? Go on. Go do it!

Little things can have a huge impact! Sometimes the smallest things get noticed the most!


Robin Williams is no coward! Neither are you!


The world lost a man many people loved. Robin Williams was found dead in his California home, and the cause is suicide. He was a man who made many laugh. He was one of my favorites. I was fond of his stand up work. He could play a funny man, genie, alien or women with ease. Like in Mrs. Doubtfire, Birdcage, Mork & Mindy, and Aladdin. He could be the weird creepy guy too as in Insomnia. His stand up will make you laugh until you pee yourself or likely spit soda out of your nose. His talents where endless! He made me laugh many times throughout my life.

He had fame, boat loads of money, many friends, a wife, 3 kids, and a great career? Many people say “I don’t get it? How does a guy with all Robin Williams had commit suicide? How could he possibly be so sad? He had everything to be happy about.” This is where I can relate. Can I relate to the great career, and loads of money? No that I can’t relate to. I am disabled, and money is little to non-existent for me. I can relate to depression! To thoughts of suicide, and feeling hopeless when you have so much to be happy for. I wish I didn’t understand but sadly I do. And sadly so do many of my ill friends.

First lets clear something up! There is a HUGE difference between “Being sad”, and “being clinically depressed“. The differences are HUGE! But Being sad is something I think every human experiences in their lifetime. Being sad is a normal emotion felt by many. Various things make people sad. You’re sad when your cat dies. You’re sad you got a D on your math test. Sure it hurts! You question why? You might feel a little angry. BUT being sad gets better. Being sad doesn’t take over your life! Most sad people are not sad all the time. Most times you can do small things to help your sadness get. Sadness is temporary.

Being Clinically Depressed is a whole different ballgame. Depression requires no reason. It can happen to anyone! When one is depressed they need nothing to happen first. There is no why, what or how. Being depressed is a mental illness that can happen to anyone. Sure I could go on and on about brain chemicals, chemistry, hereditary factors blah blah blah blah! THOSE are NOT the reasons I want to get into other than yes depression is an illness! Depression is an illness the same as Diabetes or any well-known” illness. Illness is illness! Depression needs no kitty dying to set the person into tailspin of their own personal doom. Sometimes there are no reasons to make the person angry, lonely, anxious, hopeless, tired, and just well depressed.

Some people have reasons to be depressed. There is clear-cut reasons why depression could be an issue. Many acknowledge these reasons being valid. But some do not. Like in the case of Marines, and Soldiers struggling with Post Traumatic Stress Disorder. The effects of combat, and the very demanding life of our military personnel becomes very taxing for some men and women. When you have a seasoned veteran whom had been deployed many times you nod, and say “ahhh now that I understand!” PTSD causes depression among other things. Anger, suicide, broken relationships, trust issues, insomnia, substance abuse are only a few things PTSD can manifest as. The feeling of doom, the fear, and hopelessness are all the same. The reasons are the only thing that’s different.

When you are the one depressed you want to poke anyones eye out when they say “but you have so much to live for! You have many reasons to be happy! You have NOTHING to be sad about!” Well ya no shit Sherlock! You think because I am depressed I don’t realize I have a family? Friends? 3 dogs and 3 cats? All of which I know love me? Yes I realize this, and sometimes in my not-so-right state of mind I have told myself they would be better off without me. I still love them. Many times I want to do better by them. Depression doesn’t always make one a heartless asshole. Many suffer in silence. A depressed person doesn’t always live a life of reasoning. Depressed people don’t think clearly. They’re not hateful monsters.

Depression can happen in anyplace, and happen to anyone. It might be your neighbor, mother, sister, co-worker, boss, kids, friends, doctors, lawyers, artists, musicians, and ACTORS! It might be you! There is not one type of depressed person. Depression happens to every race, authenticity, sex, income level, any religion, and any address. Depression has no language barrier. When a person is depressed they can have everything going for them or nothing at all.


None of that matters in Depression! All reasoning goes down the John with yesterdays number Deuce. It’s the same as chronic illness. Chronic illness can happen to anyone at anytime. Depression is an illness. Rich people get sick. Poor people get sick. Funny people get sick, and depressed people get sick. You can be rich, poor, successful, a failure, funny, shy, and suffer from Depression. Depression is very real and very serious! Depression hurts! Depression is a kill joy! It robs you of laughter, and excitement. It steals your motivation and enthusiasm. Depression makes things like food, love, showers, joy seem irrelevant and unnecessary.

When one is depressed they feel lost, hopeless, worthless, and alone. You may ask how a person like Robin Williams could possibly feel alone? He had a wife, kids, fans, and many friends. NONE OF THAT MATTERS when you are depressed! It’s like looking at the world through scratchy, fogged up glasses. You fail to see things right in front of your face. Everything is fuzzy and out of focus. You don’t see them. You don’t smell them. When you’re depressed you don’t take appreciation in the small things in life anymore. In fact when you’re depressed you find fault in everything and everyone. Nothing is good enough. You find joy in nothing. Even if it’s something you previously found joy in.


You feel unloved despite the number of friends or family you may have. No one is ever enough, or does enough for you. You feel like no one likes or loves you. Depression is the I can’t get off the couch. Everything becomes unimportant. Cooking is useless, and you forget all your commitments. It’s a dog that wants walked. It’s a child playing alone in their room. It’s calls avoided. Texts not sent. Emails ignored, and cookies not baked. Showers ignored. Teeth not brushed. Medicine not taken. It’s finding every little fault in your friends, family, loved ones and anyone else that crosses your path. It’s the lost jobs. It’s the bills over due, and the rent unpaid. It’s movies not watched and books not read. It’s that pile of laundry, and a messy house. A blog left blank. No poetry in your heart, or songs in your soul. It’s a frown on a Unicorn.

It’s not about finding your happy. It’s that you’re to tired to look. It doesn’t mean the person doesn’t “like” or “love” things. It means that when they do the things they love they find no joy in those things. It means NOT doing anything at all despite how much you love something. It’s not knowing how to make others feel loved. A lack of compassion, and empathy. When one is depressed they don’t see that light at the end of the tunnel. They don’t see the great rewards. It’s the rain that never stops.

Many people were stunned about Robin Williams death! I replied “It’s the funniest, loudest, most artistic, creative, and joyful people who suffer the most!” He couldn’t believe it! You see it’s the happiest people who are the most conflicted inside. I don’t know anyone that is artistic or very creative that isn’t conflicted in some way. My normal may be your abnormal. Different people need different things in their life, and different people function on different levels of sanity. Everyone is unique in how they handle their struggles. What’s hard for one, is easy to another. Everyone has things that are hard in their life.

The happiest people have the most pain. When you hurt so much, so often, for so long you look for ways to cope. Being funny, outgoing, cheerful, and creative makes others happy. It becomes a coping strategy. If you can make others happy you will surely feel happier yourself right? This is only a temporary solution. Many depressed people just “fake it until you make it”. Sometimes its easier that way. People ask fewer questions, lecture you less, don’t judge you, and you avoid tons of unwanted advice. You don’t get those looks of sad eyes saying I pity you. People don’t post memes on your wall prompting “Don’t worry be happy!”, and they certainly don’t look down on you. Everyone loves a happy person, and is looking for a good laugh. Not everyone can be happy all the time.

When you’re the one making people laugh you can hide within the laughter. It’s like when you’re seven, and build a fort! You can hide, and by hiding you can create a sense of security. You carry heavy burdens weighing heavy on your heart. You keep your pain to yourself. You struggle alone. You cry alone. You fight alone. You feel alone although you might have everything. You feel alone although many suffer all the same. You know you should be happy but you become unsure how.

You may think a person contemplating suicide is weak. Or that one that did commit suicide was taking the easy way out. WRONG! Because when you’re so depressed, and suicidal thoughts start happening it’s about being free. Free from all the pain you harbor in your heart. Free from all the hurt, tears, disappointments, and burdens. It’s about not feeling alone anymore. It about not putting your family through hell anymore. It’s wanting no more physical, and emotional pain. It just wanting to be free…..It’s being tired of being depressed! It losing hope of ever finding happy again. It’s forgetting what happy feels like. BUT!!!!!!!!!!!!!!!!!!

Their comes a point in one’s life you take off those crappy glasses, and say WHAT THE HELL WAS I THINKING? You feel the suns warmth on your cheeks. A child’s laughter causes your heart to flutter. Kisses feel genuine. You realize you deserve the love that you receive. You can say I AM WORTH IT! You feel beautiful once again. Food tastes great, and you smell things again. You WANT to do things. You find yourself making plans, and setting goals. Music is blissful, and books feel right in your hands. You have an urge to care for yourself, and others around you.

You want not only to make others happy you want to be happy yourself! You want to do good, and feel good. You don’t want to hide anymore. You want to be the person that so many love so much. You want to NOT be depressed! For some that’s easier than others. Getting better can be damn hard work! Some will need medications, therapy, meditation, diet, exercise, and a doctor’s care to battle depression. Others can rid it away with less but the battle is never easy. Depression is REAL, and it SUCKS!!!! It almost always requires treatment!

Depression is NOTHING to be ashamed of! If you’re depressed please reach out! If you truly feel you have no one FIND SOMEONE! If you need call a free suicide line, or chat with them! Join a support group online. Call a trusted friend or family member. Go to a minister, priest, Rabi, or other trusted religious figure. Please don’t suffer in silence, and please don’t suffer alone! And if you need the help of medication, your doctor/therapist so be it! There is no shame in treating depression! The only shame is NOT treating it! Believe it or not if you left Earth today someone would miss you! Don’t place that burden on others! Pull up your big boy/girl unders and deal with it! If you need help ask, because NOT being depressed is so much better than being depressed! Take it from me!

RIP Robin Williams! Now I understand why I felt such a strong connection to you. I hope you’re happy, and pain-free in the Great Beyond!

If you’re a Veteran call (800)273-8255
or text 838255 for support by text
or chat live at

Or IMAlive is another great website! Chat live at

Or contact the Suicide Prevention Lifeline

Kristin Brooks Hope Center
(800)442-4673 (HOPE)



Yes I Have Bad Days!


I am generally a positive person. I am well rounded, and most times I make the best of any bad situation. I am one of those people that sees diamonds in the rough, and treasures in the trash. I generally see the good in anyone, and any situation no matter how much it sucks. I like to laugh, and be positive. I choose to see the good in life. Even though I may be sick. I choose to find the good in my illnesses, and laugh about it. Yes there is good things about illness, and yes you can find things to laugh about. I just happen to have many things to laugh about.

I choose to flip the bird to people that whine, and are mad all day. People that let their illness consume them. People that can’t have a positive attitude, pull up their Granny Panties, and move on. People that think they are better than me. People that have lost the will to fight. People that are pricks. People that are mean to dogs. Prejudice people, bigots, and hateful folks. Don’t get me started on those twats that forget their kids in hot cars. The ones that forget their babies but not their cell phones. No Sir don’t get me started on those turds. I don’t have enough middle fingers, or a big enough stick for those folks!

The people of illness are no different than people in general. You have your people that are pist off about it. People that are indifferent about it. People that are thankful for it. People that do good despite illness making it hard to do so. People that are happy about it. Fighters, and people that never give up. Some people in the illness community amaze me. Some leave me stunned. With me yelling “WTF are you thinking?!” We are people all the same, and have many differences. Everyone is unique in the way they handle their illness. We only share some things in common. We share diagnoses, symptoms, doctors, and opinions. We are each unique in the way we’re created though. We cope with illness in a unique way. The same as life in general some cope well, some don’t, and many do a little of both depending on the day or certain situation.

Sick folks have lots of extras in our lives. Extra names assigned to us. Extra shit to carry. Extra things to remember. Extra places to go. Extra burdens to carry. Extra bills to pay. Extra creepy people to watch out for. Extra precautions to take. Extra dietary precautions. Extra medications to take, and lots of extra emotions. Those emotions come from all the unwanted advice from others, asshole doctors, careless family members, partners that grow tired of our illnesses, and the extra burdens we carry. Burdens of all the should haves. I could haves. The I need to. The I forget to, and the I didn’t do. I have many burdens I carry each and every day. Yet still I FORCE myself to be happy!

If I get an apple with a bad spot on it I cut that piece off, and consume the rest. If I cut my finger doing so I slap a Band-Aid on, and move on. Band-Aids make everyone feel better! Especially ones that are pretty! Well they did when you where 4 why can’t they now? I view life the same way. By getting rid of the bad in my life the good will shine through. If I have a bad day, and feel like hell I tell myself “well I am alive, and I woke up another day.” It’s not bad! Things could be oh so worse. Like I could be dead. But I am not so I will be happy about something. If I don’t get all the things done I wanted to I pat myself on the back for what I did get done. Don’t laugh I am super bendy and I CAN pat my own back. I can also itch it all by myself. This is just how I am. Most days this good attitude serves me well, and helps me fight day in and day out. But then there was that one day. This one time, and it wasn’t pretty!

What happens when the happy-go-lucky person is NOT so happy-go-lucky? What happens when all is doom and gloom in my neck of the woods? I would be a liar to sit here, and tell you people that I am happy 24-7. That I never cry. That I never get pist off. That I never want to place blame on others. That I don’t get down. That I never feel lonely. That sometimes I am not ashamed. It would be a huge lie to say that at times I am not an asshole.

Sometimes I say things I regret. Sometimes I get downright tired of being sick. Sometimes I loathe taking medicine, having a special diet, and all the other special crap I have to do. I get angry I can’t always do what I want to right when I want to do it. Sometimes it sucks always having to have a well thought out plan to go anywhere or do anything. I am not always right about everything. Sometimes I suck at being sick, and feel like a failure. I have days I miss what I could be doing that I can’t do any longer. Being able to do whatever I want right in the spur of the moment. I miss what I could do before. This happens to me! Anyone whom says is does NOT happen to them once in awhile is full of all things brown, and stinky. With tiny specks of corn, and Kiwi Seeds.

It’s okay to have a bad day. What is NOT okay is to have a bad day everyday. You have a choice to make your day a good one or to go ahead and let it be a bad one. Bad days keep us grounded. They remind us that life is not all candy, ice water, unicorns, rainbows, puppies, and kitties. But good days keep us going. They give us the will to keep fighting. To deal with all the stupidity we face in life. To not slap rude people, and to make good choices. To laugh in the face of all our hardships. Good just feels BETTER! But bad is necessary too, and yes even I have a bad day sometimes.


I feel people expect me to always be happy, carefree, strong, and funny. They look to me like I am some wise Yoda that always has a joke to tell, and a laugh to share. That I know all there is to know about EDS, POTS, and any other illness. This is an expectation that comes with big shoes to fill. Big HUGE Ronald McDonald clown shoes. It’s not going to happen people! I wear a size 3 shoe. A 4 at best, and a 5-6 sometimes because it’s the smallest fattest shoe I could find on the clearance rack. I cannot walk around filling your giant clown shoes people! I cannot be what I am NOT! Sure clowns are funny, cute, vibrant, and make you laugh. Some can do some pretty amazing tricks too. But so far the only magic tricks I have accomplished is to light my own fart. I have since been able to repeat this trick of magical wonder but hairspray will light a campfire. As a teenager once I packed 10 people in my Trans Am. The cops did not giggle with delight the same as I did at the circus when the clowns performed this stunt. Lets not forget though clowns scare the shit out of some folks. The sight of a clown makes many grown folks run away screaming “MOMMY” like a fearful 4 year old. Not something I want to portray! I don’t like to scare people unless they are doctors with bad attitudes. That deserve to be made to poop themselves.

I will keep on keeping on. I will keep on being happy. Seeing the good in all the bad. Counting my blessings. Thankful I woke up today. Appreciating all my friends and the family that accept me. Completing random acts of kindness. Being polite to strangers. Being the Mama my kids deserve. Being the friend my friends need me to be. Being a good partner to my hunny. Writing blogs to uplift you. Taking pictures to please you. I will do so with a smile on my face, and a joke in my brain. A joke just waiting to be told. I will be a laugh waiting to share it with you. Plotting my good deeds.

Then there was this one time……..the one thing happened to my cousins, neighbor, uncles, friend, bosses, baby daddy. Then he said, and she said and well it all just escalated form there. Then I heard “hey y’all watch this, and dude please hold my beer!” It wasn’t good folks!


Don’t mind me I will just be over here mumbling many words of profanity under my breath, and saying many out loud. Plugging in a movie so the noise of my kids won’t make my head explode. Today the “Mom Mama Mommy Mother!!!!” Is overwhelming to me. I am sitting here in my messy house. Eating whatever someone else cooks for dinner. Alongside my dog that farts. With my hair a mess, and my armpits a little rank. My legs are hairy, and my feet are dirty. I am feeling lonely and pist off! No one loves me. Everybody hates me. Guess I’ll go eat worms.

I am mad that illness costs so much money. Mad because it’s to hot for me to be outside today. Pouting because I would rather be at the river, but mad I don’t feel like going. Plotting…. Plotting all the ways I can be mad. All the people I can be mad at. Tallying up all the doctors that have done me wrong. Taking note of the family members that have turned their back on me, judge me, talk about me, and don’t like me. Missing the many friends I’ve lost over the years. Counting all the times I’ve been lied to, and all the opportunities I’ve missed. Making a list of all the things I DON’T have in my life. Ehlers Danlos Syndrome sucks! POTS blows! Mast Cell is like furry, stinky Donkey Balls! Intracranial Hypertension steals candy from babies, and Chiari is an asshole. My shunt is like a fat lady going through menopause. Everything is like fruit. The fruit no one eats soon enough and it attracts fruit flies. No not flies Dung Beetles. That’s it! Because all these illnesses are a bunch of HORSE SHIT!

Oh look a unicorn! A unicorn that is offering me a giant bag of Skittles. What’s does that sign he’s holding say? Free puppies and kitties? Don’t mind me. It’s been one of those days! Join me on my Magic Carpet Ride! Want some Skittles and ice water?


Dirty Little Secrets


I have been asked many times, and I’ve even asked others many times myself “What’s your fears?” That question goes hand in hand with the question “What are your hopes, and dreams?” They go together like peanut butter and jelly. Like ham and cheese. Milk and cookies or like southern folks and the saying “bless your heart!” Most of the time when people want to know your hopes and dreams they also want to know your fears. Not always is this the case though. Sometimes they can be separate. The same way I don’t like cheese on my ham sandwich, and my son likes only jelly on his. But alas I am sure you have got asked this question before, and if not you will. At some point in your life you will. When you’re sick it seems it comes up even more.

How would you answer? Everyone has fears! Even people that are not your scared types. I don’t know anyone that doesn’t have some fear of something or someone. Some people fear way more than others. Some people have more intense reactions to fear. For some fear brings about crippling reactions. For some it’s nothing more than “oh that scares me.” But you would never think they act scared. They are scared all the same. Some have many fears, and some only have minimal fears. Having fear doesn’t make you weak, and it doesn’t make you crazy.

For me fear never has been many things. My whole life I’ve been scared of turtles, and horses. If you where to see me around them now in my adult life you might not even notice. That’s because I have overcame many of the fears. Well somewhat overcame my fears. Not totally overcame them though. To get on a a horse still requires much self talk, and calming myself down. Fear, and horses don’t mix. Horses can sense your fear, and they act on it in a major way. But some fear still remains, and even being around a horse takes work for me. I don’t think I will own a pet turtle anytime soon. Those things just freak me the hell out! The way their head pokes in and out. However I do have a horse.

Fear changed for me when I became ill, and with illness it brought all kinds of new fears. Fears that are much more complicated than turtles, and horses. Fears that takes the wind out of my sails, and sometimes kicks me on my ass. Fear that shows so much so sometimes that it also scares my family members. These illnesses have also created fears for my family that was not there before. THIS makes me sad. I hate that I cause them to have fears that they did NOT HAVE BEFORE! I hate that I cause them worry. Most of these fears are felt by my hunny. Then also by my oldest children. They fear what will happen to their mother? My hunny fears many things, and this makes me sad. Very sad, and makes me feel very guilty. He tells me that he fears I will not wake up one morning. This eats at my soul! This shouldn’t be something a young couple should have to fear!

What are my fears you may ask? I will give you a cookie if you can guess! But if you have a chronic illnesses I can almost bet that know what I am afraid of. I can almost bet right now that you’re nodding your head, and saying “YEP! YEP I can totally relate to that.” I know that my fears are those of many folks that are ill. I know that I am really not that unique in the things I fear. But that doesn’t make it any less frightening. It doesn’t make it any more easy. It doesn’t being you much confront when you’re alone, and scared. It doesn’t hold your partner when they are scared out of their wits. It doesn’t help my normal friends and family understand me any better. It doesn’t help me NOT be afraid any less. It doesn’t comfort my hunny that nothing will happen to me.

What are my fears you say? I will tell you my fears, and I hope by sharing my fears it will help many of you know that you’re not alone in yours. I hope it helps you know that you’re NOT wrong to fear these things, and that maybe it will help your family know that are not being dramatic. That you’re not asking for attention. That you’re NOT playing games, and that you’re NOT crazy. And you’re NOT any different from most people that have a chronic illness. You’re NORMAL in the chronic illness world, and here in this world you’re like many others. You’re NOT a dramatic, attention seeking lush here. Oh no here in this world you’re THE NORMAL! You’re like many others, and you fit right in among the crowd here. And here in this world we have legit fears. We have reasons to be scared, and we’re NOT wrong for it.

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I am scared of dying. I am scared of leaving this world, and NOT having everything prepared. I worry that my family can NOT pay for it. I worry that my kids would be without a mother. That my hunny wold be without someone to hold at night. I worry that he will have to do all the things parents do, but that he would have to do them alone. I worry that he will no longer have someone to say “remember when?” To share the memories of when our kids talked, walked, rode their bikes without training wheels, got a boo-boo while climbing to fetch the cookies we hid from them, and I worry if he can go on without me. I worry what life will be like without me in it. I worry that maybe he couldn’t do everything we do together alone. I worry about who would help him if I left this human world? Who’s shoulder would he cry on? Who would hold him, and listen to all his fears. The things I do now? Who would kiss my kids boo-boos? Who would bake them cookies, and make their favorite Birthday Cake? How would he pay for a funeral? How would he even plan a funeral alone? But that’s not all! That isn’t my ONLY fear. Oh boy are their many more!

I worry that my family may grow tired of me. That they get sick of having to care for me. I worry that they will grow sick of their house not being spic and span, and not always is there a dinner waiting for them. I worry that they will grow tired of me because I can no longer play with them everyday. That I lack the energy to be Super Mom. I worry that I am not the best wife that I could be. That I am not the best friend I could be. That I am the lame sister. I worry that people will grow tired of me. I worry they will get angry about all the events I miss, and the things I can no longer do. I worry that love isn’t enough.

Love can conquer many things. But can love conquer all the complications that illness adds to it? I am a dreamer, and I always see the good in others. So much so that many times this backfires, and I get hurt by it. I always assume people are good, and want to do good things. Meanwhile they may be the most mean, and corrupt people. They do things that hurt others, and sometimes I sat there in disbelief. In my mind everyone is good, and intends to do good things. I worry about the burden I place on my family and my hunny. I worry because when we met I didn’t have all these health issues. I could do much more than I can do now. Am I letting him down because I changed? Yes I know the whole “In sickness and in health thing” of marriage vows. But we wrote our own vows and we didn’t promise this to one another back then. Sure we promised one another forevers, and always. But………..what if? What if love is no longer enough?

Is love enough? Is that enough to patch the wounds that illness causes. To sooth his heart when I am an asshole because my pain is so great. Who can comfort him through his own illness when I am to sick to do so? Who will make his favorite supper when I am to sick to. He says that it’s okay that I don’t. But does he really mean it? No amount of beauty, and no charm can soothe the heart of your lover. Even the most beautiful person can be ugly. The best marriages suffer sometimes. And illness is like an ultimate test. A test that offers no grand prize, and no all expense paid trip to Hawaii. Some win, and some lose. Some play because they feel they have to. They feel it’s the thing to do, and they are obligated to do so. Is my hunny only remaining because he feels he has to? Or does he stay because he chooses to?

What happens when one grows tired? What happens next? When will it happen? Or will it ever? This fear is one that is very overwhelming, and at times feels like an elephant on your chest! What do we do about these fears? Do we sit around, and worry about them day in and day out? Do we plan on the “what ifs”? Do we make an exit plan “just in case”? Or do we put it all aside, and just live our lives? Be happy, and live? The choices we must face day to day. The choices we face when we’re are ill? The guilt we feel. The burdens we carry.

I can’t tell you how to live your life! I cannot tell you what to do, and when. I cannot tell you how your life will play out. I also cannot promise you that your life will be all puppies and kitties. I cannot promise you that your lover will never leave you or that your family will always understand you. I cannot promise your doctors will always be kind, and that your illness will get better. I cannot promise you friends won’t grow tired of your and leave your side. I cannot promise you everyday that you will smell the roses. That things will always be easy. In fact what I can promise you is that at some point you will get hurt. That you will likely have bad days, and that some doctors are going to be pricks. I cannot promise you a Rose Garden. In fact my gardening skills suck!

What I can promise you is this! I have fears, and that it’s okay for you to have fears too. It doesn’t make us bad, stupid or crazy! It only proves we’re human. We have feelings that humans feel, and we cannot always control what or how we feel and when we feel it. It’s okay to be scared, and it’s okay to have fears! What I can tell you is this. NEVER STOP living your life because you’re scared! Let that fear motivate you to live harder, longer, happier, and more free!

Much love to you all! Now go out and live! Live even when it hurts! Do what you love and NEVER regret!