Bloody mud piles, play
dig your mean gut, soul, under
Won’t cry over you.
Bloody mud piles, play
dig your mean gut, soul, under
Won’t cry over you.
One of my oldest, dearest friends is staying home this Thanksgiving with her dog, Daisy. I feel for her because Daisy is close to dying. Barbara, one of the most tender people I know, if you can get inside her layers of bravado, will not leave her side. She will sit with Daisy and eat turkey together and will not leave her house for one minute, she knows this is Daisy’s last Thanksgiving.
Ba and I have grown up together and I don’t say this lightly. We have been friends for over 30 years. We may not see each other for 5 or 10 years at a time but our connection is unbreakable.
Barbara has cooked a turkey for Daisy because Daisy still has her appetite and I know that my dear friend will be eating with her. The dog can’t walk easily so Ba helps her on to the bed, where she sleeps, on and off. Barbara hasn’t had a good night’s sleep in weeks and from how she sounded I can see the dark circles under her eyes. The ones I used to see when she allowed herself to be sad in front of me, crying, when she was vulnerable and unafraid to be who she was.
Part of me wishes I could be there, for her, part of me is grateful that I have my own family to be with, I was never good at endings. I can barely say good-bye. All of my old feelings of our first dog, Callie dying unexpectedly are coming up. I can’t write this without being misty-eyed and I am controlling myself. A lot.
I am sending my love to Daisy and to my friend Barbara because I know how hard this is, most animal lovers can certainly relate. I know that Daisy does not have much time left in this world, and in fact, when I found out that Daisy died, about a week later, I knew it in my heart, I felt it deeply. I even told my husband the very same day that Daisy had passed.Dog lovers, animal lovers, there is a bond like no other. Daisy was Barbara’s fur baby.
You cannot know love until it is taken away from you. That is when the grief process begins. The house, Barbara lives in now, is just way too silent.
In memory of Daisy, dedicated to Barbara with love.
I’m horrified. I knew all about Invisible Illness Week and wrote about my chronic pain and Fibromyalgia but just found out today that its National Suicide Prevention Day? Something is so wrong here. Why didn’t I know this day was coming and if I didn’t know, I bet you many people didn’t either. That’s shameful.
I feel embarrassed and I also feel ashamed for the people who put this together for not advertising it better. This is NOT something to take lightly, I think we need a RE-DO here, maybe another one next month? Actually, how about one every month? Now, that, is a great idea. We need more prevention and mental health funding!!!
I’m here now and I’m begging anyone who is contemplating suicide to please stop for a second or two and take a deep breath. Thanks. I’m not asking for your whole life but how about a minute? Just read one more sentence.
Think about the people who love you, truly love you, who you will leave behind. People who WANT you in their lives in any shape, in any mood. They love YOU, the way you are, unconditionally. I’m a mom, I know about unconditional love.
Depression is no fun, we know. We’ve all been through it but there is more help now and different medications and I’m positive that you know at least one good friend or one sister or brother, husband, wife, lover or cousin that would stay with you and help you. There better be, because they would have to answer to me if they don’t.
Instead of taking your life, write your thoughts down, put them on Facebook, email a friend. Email ME. I will listen. I will hold your hand, at least through the computer, and I’m no genius or therapist or doctor.
I’m a regular, really nothing special person, that loves dogs more than people, adores jelly doughnuts, hates to exercise, am technically clueless (ask the people at the Invisible Illness Week) but somehow muddle through things, through life. My life hasn’t been easy, you need to trust me on this one. I can’t lie, it shows on my face in a second.
So, do me a favor, take a few deep breaths, walk away from wherever you are and call a friend, or a hotline, listed below, TELL SOMEONE YOU NEED THEM. ASAP.
Communicate and reach out. But, please, don’t harm yourself, it won’t solve anything and will destroy those that love you. I don’t know you but I know you are worth it, you are worth another day, and the day after and many days after until you can wake up one day and think back and say “Wow, that was close but I’m so happy I didn’t go through with it.” Then, you too, can help people step away and to live their lives as they should. You will be their hero. I can see it now. I just know it.
Nothing could console me the other day. I was heart-broken about life in general and dear family friends whose demise was absolutely shattering. There didn’t seem to be much happiness in our lives (with the exception of our kids) and not one blessed thing could cheer me up.
I initially thought I should try to shake myself out of this mood but the world was an evil place, life was not fair. I thought things were supposed to work out in the end, I had believed that all my life, not anymore. Things don’t work out many times and even though I may root for the underdog, they don’t always win. There was is way too much random sadness, unhappiness and sickness, things, often, don’t work out.
First, I tried to justify things, to try to explain them to myself. That didn’t work, there were no answers. There was also no need for me to try to cheer myself up. So, I stopped.
I realized it was perfectly okay not to try to make myself feel better. It is really okay to feel bad. What’s wrong in feeling crummy once in a while? I never got dressed, I wore my long black V neck T-shirt that falls to my knees and didn’t even take a shower. I stayed in bed not that I felt particularly sick or winded, I just felt blah. No one ever said life was perfect so I decided to have a mental health day and be alone with my crankiness and cuddle with my sweet dog, Lexi.
Lexi didn’t care if I was in bad mood, she still jumped up on the bed right next to me. She always keeps me company. I can count on her to be there for me, that’s the wonderful thing about dogs. Unconditional love. She doesn’t have to give me pep talks or call me on the phone like a friend would have to do, she knew I needed her and she put her head on my stomach, even our breathing was in sync.
I’ve noticed lately that my friends don’t even call anymore. They text. I find this horrifying. When did my generation start doing this? I make my kids call so I can hear their voices but my friends now text? Insulting. They can’t be bothered, either? What’s next? I’m sure I won’t like it.
It’s a very hard world out there and I used to be such an optimistic person but I’m not anymore. Life, as we know it now, has changed me. Part of me feels like bursting into tears this very second and the other part won’t let myself. I’m not sure if I could stop if I let myself cry….. I keep trying to hold it in and hope it goes away. I know that won’t last. Life is tough, really tough and the older I get, the more difficult it becomes.
I have no more expectations that things will get better. Why should they? They haven’t been good for a really long time and yet still I try to be grateful for the good things I do have.
It doesn’t change the world but I don’t want to become a bitter, cold person. I know it won’t change my circumstances or any one else’s but it keeps me focused on the good not the evil, most of the time, it’s hard work.
When I was young, my mother used to sing this song:
She never did promise me a rose garden, but I always thought there was one anyway.
Fellow eppiglottitis sufferers, you KNOW what I am talking about, don’t you? How WAS your Winter? I know it’s still July but I am already on high alert just anticipating the cooler temperatures approaching.
This murderess, inexplicable disease comes quickly from one day to another landing at any time, in one very specific place, beyond the throat, with no warning whatsoever. All the patients are sure of is at least ten to fourteen days of hell and the most excruciating pain we have ever felt. Am I wrong?
I just crossed my fingers so I will not jinx anybody, including MYSELF. Many people have written and asked me about this disease and while I have always followed up on each e-mail, now I want to ask how everyone did this Winter? I narrowly escaped it this year but I’m sure it’s on my To Do: List for this Fall. It’s hard to believe that you would be lucky twice in a row.
Does anyone care to share? All “jinxes” are off and if they are on, I will be the one to get it because I initiated this damn blog. We share the same, horrifying experience, we feel the same excruciating pain and for all the pills to swallow and liquid to gargle it takes a long time to even feel the beginning of recovery.
As I mentioned in my earlier blog, “Calling Eppiglottitis A Bitch Is A Vast Understatement” the first time it happened, my ENT scoped me and said out loud “How the hell did you get THAT?” My answer, in my head, was “isn’t that your job, Bozo?” Which of course I didn’t say (basically because it was too painful to talk.)
Worst. Pain. Ever. Childbirth is like a little cramp compared to this misery of hell. There are no pain pills that can keep up. Literally, none. Be thankful if you can still breathe and get yourself to the Emergency Room ASAP.
It starts as a simple, little sore throat and then our alarm bells are on alert…we are always aware that this could be an invitation to the deadly Eppiglottitis instead of just a regular old-fashioned cold. If a sore throat lasts more than a few days/ gets progressively worse, I haul my behind to the ENT where he will insert a tube (sorry) through my nose to look at the usually ulcerated gap beyond where the throat lies.
Swallowing is torture. Pure torture. I did read of a trick that, while it may sound disgusting, has a definite advantage: don’t swallow. How, you ask? Lie on your stomach and have a spit bowl. Next time I have it I am definitely trying that. What could be worse than that razor blade swallow. Nothing.
Also, get your behind to an infectious disease specialist, I have never been but I plan to go the next time this horrible disease stops by to visit.
I hope you have a wonderful rest of the summer and do keep in touch with me in the Fall and of course in the dreaded Winter. Keep washing your hands as much as you can (it will make YOU feel better) but no matter what you will get through it if it should creep up on you again. Trust me, I know.
To my fellow Eppiglottis Sufferers,
Here are some answers to questions you have asked me:
1) YES you CAN get Eppiglottitis AGAIN and I’m sorry. ( I have had it twice )
2) There is no way to prevent it. If you found a way, please contact me immediately.
3) Yes, it causes unbearable pain.
4) I worry as soon as my throat tickles much less hurts.
5) “Calling Eppiglottitis A Bitch Is A Vast Understatement” is my most sought after and popular blog post.
6) No, I never had my throat/breathing problems/occur but if you have trouble breathing,
go to the Emergency Room or call for an ambulance. Do NOT take chances.
7) No, you cannot “SEE IT” looking down your throat. It is below the throat and a doctor will have to “scope you.”
(don’t ask.) Okay, fine, he or she will have to thread a tube through your nose so the doctor can see what is happening down there.
The first time I had it my ENT (Ear, Nose and Throat Specialist) said “How the hell did you get THAT?” Gee, thanks, Doc.
8) Yes, I too, live in constant fear of getting it again.
9) Other doctors? I have been told if I get it again (UGH) to see an Infectious Disease Specialist.
10) It hurts so MUCH because it is incredibly painful to swallow and you have to swallow, lying on your stomach and spitting into a bowl is an idea but not a solution.
11) I feel your pain and your anxiety and I hope this will be an Eppiglottitis free year for us all.
12) Yes, I do have Fibromyalgia and an auto-immune disease (Hashimoto’s Thyroiditis) but apparently there is NO connection.
13) and Yes, if there is interest, I will consider starting a group on-line.
Feel free to keep those questions coming and to share your own miserable experiences, believe me I can relate to them all!
GOOD LUCK FOR A PAIN FREE WINTER!
Bear and me
my name is greta, i am five. i live here with my bestest friend Bear, we used to live someplace else but no more. we came 2gether cuz wee had 2 cuz of the bad stuff for us but we love it here. he and i are the ones in charge of all the other friends and family. theres mr. red cat, an mrs.duck and her yello ducklins, monkeys that make me laugh when they tickle me under my chin or throw me lellow bananas. they swing from branch 2 branch like a circus show some person in the bad other world took me from.
circuses were fun once but not ythe other part where i got losted and the mean man pushed me in the bathroon door an hurtted me a lot. he lockeded the door and i tried to screem but no words came out and my momma culdlnt find me cuz he coverred my lips with a smelly rag. no daddy came neither, but i new they was lookin for me cuz i kept hearing my name in the air. for a little while until i was asleep an i f elt sick.
wen i woke up i didn t now wher i was, and i has to throw up bad. the mean guy was still ther and he was madder than smoke i got sick again and again but i had to. i didnt want to mac him mad, i swear. he hit me a lot. he told me to shut up and used a realy bad wordd but i cant repeat it but it starts with the letter f—. i tried to stop sayin anythin and to stop cryin but i wantd my momma and daddy sew much.he sayd they didnt want me no more an i was gonna be dead soon after he got some money for me.
he sayed he waz gonna sell me but somethin bad happened an there was lots of bad men fighting an screeming, i herd guns an shootin, i saw red blood flyin aroun the small white room, no win-dows. i tried to pre tednd i was sleepin but th en i messed up. i opened my eyes too fast and 2 guys, one the meanest one, got a shot gun an the other a small gun an they both shotted at me the same time, in my bleedin heart and left me. i waz bleedin an in the beginnig it hurt but i couldnt cry an then it didnt hurt an i was raised up to be here past the blue sky an puffy clouds to be betterer an happier to live with Bear an my animal friends forever. i no peoples say that some mans and womens are good but i dont care i dont believe them, an i dont have to cuz my world is safe up here with my forest family.
During my college years (which I can remember vaguely but with fondness) I always needed SOME sleep. I never was one of those “all-nighter” students, I needed at least four hours of sleep. My main problem and yes, it has carried on still today is that I hate the taste of alcohol (hang my head in shame,) so I wasn’t the wild, party girl type. 6:00AM was right in the middle of my sleep.
6:00AM was ONLY for the love of my two sweet young ones, 21 months apart. We called my son “the farmer” he was awake every morning at 5am toddling in his little one piece sleeper to wake me up because “he didn’t want to miss anything.” When I think about it, he’s still the same way now at 21.
Our daughter, came screaming into the world and kept screaming. I was up with her many times a night so if it was 6:00 am or 3:00am it was just to pick up my sweet girl, hold her in my arms and feel her body immediately relax.
That’s what it takes if you want to be a mom, like I did. I wanted to be a mom since I was six years old, I became one at 33, after two and a half years of painful and emotionally draining infertility treatments.
So at 3am, 6am, sure I was tired. But holding a crying baby in my arms, was nothing short of a miracle to me and it never upset me or made me mad. I was able to hold my baby as I sat in the rocking chair, all my dreams having come true. Who was I to complain?
Screams roar from my mouth
words can’t escape the damage
I turn to the wall.
No-one speaks or shouts
Try to talk in measured tones
Words that are silent.
Old wounds, never die
ripped apart with trembling hands
Add blood and lemon.
Deep within my grief
We know that life is cruel, sad
Always more to come.
Dear Invisible Illness Sufferers:
I’m conflicted. I want to say that we have lost a part of ourselves, a physical and emotional part, do you think it is a good idea to get together in real or computer time to say good-bye to the people we once were? Have we done it ourselves? Or do we just accept and let it go? There is the before Fibromyalgia or Diabetes or CFS, Virus, Autoimmune OR fill in the blank disease________ and after. Think about it, it would be an acknowledgment of our former selves, our loss and our lives now. We mourn people we loved; I am not the same person I was before my father died, I view my life “before he died” and “after.” Maybe we should have a ceremony together for the people we became after our loss, as simple as being silent for a minute at a designated time?
I guess this begs the question: do we ever really accept it 100 percent? We make do, we understand but it’s a way of life that we have lost, forever. I don’t believe that it will ever get better in my lifetime or that there will be a cure. That’s just my opinion. A wonderful approach is given in a book by Toni Bernhard called “How To Be Sick” which is a Buddhist inspired way of living with your illness. It will teach you things, no other book will teach you.
It has taken me years to truly accept Fibromyalgia, chronic pain and an autoimmune disease called Hashimoto’s Thyroiditis, my activities are now severely limited. Part of my energy used to be used defending myself to people who thought I was out of my mind or a pill popping junkie. Sigh. I can reassure you I am neither of those. Realistically, who would WANT to be like us? Does it sound glamorous to have no energy and to be in pain constantly? It’s not like we take magic pills to make us feel great, there are no pills that take away the pain. In fact, we don’t even remember what pain-free feels like. Of course there’s Fibro Fog but that’s a whole other blog post.
After the imaginary designated time where we mourn our former selves, we give our thanks, grateful for the life we DO have, for the cyber friends that are in the same situation that UNDERSTAND and for the body that still exists and for the many blessings we hold in our hearts.
Tell me what you think, I’d love to hear from you.