Release pain, sadness
brittle bones, fluid in lungs
let my body fly.
Bobbing laughter, rolls
aching cheeks, mouths wide as O’s
Release pain, sadness
brittle bones, fluid in lungs
let my body fly.
Bobbing laughter, rolls
aching cheeks, mouths wide as O’s
Dear Dr. Lisa Sanders, Dr. House, New York Times, The Mayo Clinic or any doctor, active or retired that wants to save a life and help a really nice, frustrated, sick woman. If you are looking for just the money, trust me, you are not the doctor, if you are looking to make someone who is desperate, happier, even if there is no answer, you’re my person. My medical person. (if you watch Gray’s Anatomy you would understand this, if not ask someone who does.)
I am desperately seeking a miracle, yes, a doctor or a team of doctors who will put all my different symptoms together (for the last eight years) and try, just try, to figure out the root cause. Believe, I have an idea but not the credentials. I don’t have the knowledge or the education, just an inner voice. That leaves me with nothing. If there is nothing that comes out of it, I UNDERSTAND but I will know, someone really tried.
I have an internist who gives me 7-8 minutes and two specialists who are absolutely amazing but they send me to different specialists and it is too much for me to handle and take in. You understand, right?
I know the Mayo Clinic would take me! I have about six doctors who would gratefully write a letter to get me inside the Mayo Clinic and off their backs. Do they have the equivalent of financial aid? I probably would be the most interesting and mystifying patient they have seen in a long time. Trust me, I’m not bragging. Living in my body and brain is pure hell.
I asked, okay, begged, two of my nicest specialists today, my cardiologist and my nephrologist if they could assign me to a medical student to take on my case, you know the way they charmingly do in Gray’s Anatomy. They both shook their head within a second and laughed. Sure, they would like to help but they can’t. Of course if I had A LOT of money (which I don’t at all) I could hire a private concierge doctor and maybe that would help me, yet break us financially and there’s no guarantee. Honestly, I never heard the word “concierge doctor” in my life. As for random medical students to assign them to my case alone, they laughed out loud. Gray’s Anatomy is truly a fictional fantasy. I want to be someone’s person. (Ask a friend.)
I’ve thought of the Mayo Clinic, Johns Hopkins and I need to do more research on that this week. At today’s nephrologist’s appointment he literally ( a 58-year-old) referred me to a pediatrician. Yes, it is not a typo. Supposedly, there a doctor who specializes in low blood pressure and syncope who sees children and on occasion, if begged, a woman of thirty, helps. My doctor is going to talk to him and plead with him to see me. P.S. he said no but referred me to a pediatric neurologist, (what?)
DO YOU SEE WHY I NEED HELP?
He also suggested a fat biopsy. A FAT BIOPSY? What on earth is that? I googled it and it really made no sense to me plus it’s always a bad idea when I research something, a very bad idea. He also recommended Hormone Replacement Therapy. My jaw dropped. He said what?
Yep, the dreaded (my own personal view) of adding more medicine to my body?
I also have Eppiglottitis, and have had this three times already. Figure that one out. I have posted many articles about it, it’s deathly pain, its sword-like plunge beneath your throat. Many readers have read this article and many ask me questions. I know there is a vaccine to prevent this for infants, I’ve asked several doctors about giving it to me. There answer is a confused look on their faces and they say “we can’t.” Why, I pursue, “because it’s for children.” Take a chance, do some research, you can’t even try?? Have you ever had that horrific pain? I also fall down from low blood pressure (we think) and randomly shake.
I have more symptoms but I don’t want to scare you away!
Does anyone have any connections? I’m realistic, not stupid. Please forward to anyone you may know at The New York Times or Dr. Lisa Sanders or The Mayo Clinic.
Thank you in advance.
the house is cluttered, my room overflowing with trash and in disarray. i keep saying i will do it tomorrow when i don’t have a headache yet that day hasn’t come yet. it’s been about two weeks in a row. yes, I am seeing my doctor on monday after my mammogram and ultrasound, yippee.
really looking forward to that day….to be over. how could it be another year? how many posts have i written about measuring the time going by so quickly by the time in the pink-purple room of the waiting room in the mammogram section. i should count them or maybe you can. they are all in this blog, i’m sure saying the same thing over and over like the warnings not to use deodorant or baby powder.
it’s always the same, not the outcome, but the process. I worry, I know everyone worries, most people can hide it, i can’t. there’s a shocker. i try to make light conversation and people seem so grateful. we are all the same in this room, in every mammogram room, we breathe the same nervous air, we give each other half smiles laden with fear, we wink, we nod. when someone leaves happily, there is always the thumbs up for them, spreading fear within.
this time i will try to do mindful meditation, it helped during my dentist appointment and i didn’t need nitrous oxide, i was so proud of myself, the dentist so proud of me. will it help on monday? i have no idea but at least i know this much, i know it won’t hurt.
a universal feeling, women in their robes, waiting to be called in. we smile encouragingly to each other. one by one we go in, we leave, sometimes through different doors.
Drum red finger nails
Clicking slick metallic rods
Life, a symphony.
Stretch, raw, hearing, howl
flesh, air compression, pain, loss
torn eardrum in flight.
Drummed, thrown out rich club
exclusive bastards, élite,
Here it is, on paper. I want to live in a state where there is much more sun
than there is rain. When the thought of Winter is a warm sweater or a light jacket. I don’t want to worry about sliding on the ice and breaking my bones, I can do without the word snow and wind chill for the rest of my life. Truly.
I will not miss the harsh wind howling through the trees and knocking furiously at my windows, tree branches attacking my house. I know that wherever I live there will be compromises I will have to make. There is always a trade-off.
Maybe there will be tornadoes that will scare me or hurricane season that I am certainly
not used to, I am pretty sure I would cower with one of those. I would want a safe room, stocked with canned items and a can opener and frozen bread I could defrost quickly, cereal and small boxes of milk.
It’s funny, when I pictured that I saw myself surrounded by my two little children but I don’t have little children anymore. Sometimes I miss that. My children are perfectly wonderful grown-ups and I am not thirty anymore. I am closer to sixty.
I probably should look for a town that has an active “Senior Center” (sorry, I just threw up in my mouth for a second) and good hospitals. It would be nice to be in a college town so I can be around all age groups.
The MOST important part is that I need to live by water, some coastal town. I don’t mean swimming pools, sorry hon, a desert town does not count. Anywhere along the coast
where it is warm (‘wrong’ Freudian slip.) I don’t want to leave my mom….but I will know when the timing is right. It doesn’t have to be tomorrow, it can be in five years, we will work something out. I will FEEL when it is right.
Something will come up, something always comes up. Eventually. Deep breathing and mindful meditation. My heart is open to new things. I’m not sure my husband is as ready as I am but when he is, when we both are and the opportunity presents itself, we will know. Well, one of us will for sure, and the other one will know when he takes time to get more comfortable with the idea. There’s nothing wrong with that, I wouldn’t have it any other way.
We have been married for twenty-six years, we’re a team, we are going to stay that way.
I wanted to have an old-fashioned cry. Long and hard, wailing, sobbing, letting all my feelings out but I couldn’t even do that. I put on the movie “Beaches” my past cry-your-heart-out movie that used to have me in tears, my guaranteed tear- jerker and while I was as Babs would say “verklempt” I had no tears. Nothing, no sobbing, no release, “bupkes.”
Now, not only was I disappointed but I was cranky as well. What the heck happened to me?
I was more interested in the different styles of cars and clothing than the actual premise of the movie. I loved Bette Midler then and actually I love her more now. Barbara Hershey kept me fascinated only because I couldn’t remember if she was dead or alive but I did remember that her lips, at one time, had grown larger or had doubled in size. Allegedly.
I think one main reason that I didn’t cry was unfortunately, life has toughened me up quite a bit. I’m a lot older now then when I saw this movie and things like that really seemed to be out of the ordinary, way back when. It was shocking and unreal. Sure, you sobbed at the incredible morbidity but when you first saw it, let’s say twenty, thirty years ago? The world was a different place, yes, a kinder, gentler place. I’m sure of it.
Now, if you want to sob, read a newspaper, watch the news, keep yourself informed about what is happening in the real world today. That is depressing. Before 9/11, and after 9/11. That is how I phrase things in my life like “before my dad died” and “after.”
I find the less I read about what’s going on in the world at night the better I am. Am I in denial? Absolutely. I KNOW what’s going on but I just can’t handle all that atrocity all the time, 24/7 so I stay away from everything except the bare minimum.
Hearing news stories today are the very things that nightmares are made of, flashbacks are happening from lifetime events. So, if I’m cranky by not being able to cry, I can surround myself with the news, and not only will I cry, but they would have to medicate me around the clock and put me in a psychiatric hospital where the lonely padded cell, at this second, would feel appealing. AND, NO, I am not making fun of the psychiatric community, believe me. I am part of that community.
I get anxious and take medication to try to calm me down. Sometimes it works, sometimes it doesn’t. Realistically, it’s a cruel world out there and in our defense we try to get stronger and stronger. Why? Because we have no damn other choice. We sink or we swim.
In case you hadn’t noticed, there is a war, there are many wars out there. Life is far from fun. Life can be very, very sad. You don’t need to watch a Bette Midler movie to cry, real life is sad enough.
Please watch below:
Black sky, shiny pearl
String of feelings, clouds, storms move
Flying, sky pink air
happily through marshmallows
The joy of wonder.
A new world of stress
sky lights up flames thrash
The force of nature.
Fourth day in a row, gray, drizzling, I’m not smiling but I’m not depressed either. I guess I have a choice which way to head. Not going down the negative road, maybe I’ll head to Target and buy something yellow that I can place in my window sill. Here’s a situation that I have NO control over, the weather but I’ll make other choices that may help.
I do have a choice whether or not to go to my chair yoga class and it was iffy in the morning. After a strong cup of coffee
with a little honey (a new idea) I decided to force myself to go and know I won’t regret it.
I’m looking at my “sun-lamp” (don’t waste your money) that I bought years ago, it’s in place but really does nothing, save your money and buy yourself some exquisite chocolate or butter pecan ice cream
or some exotic fruit you have wanted to try.
(As if I would show a picture of a new piece of fruit, LOL)
I’m going to play some music, put on some perfume, slip into my new black, Dansko clogs and make the best of the day that I have.
Think of it this way, I didn’t wake up with another migraine, I am grateful for that. I guess having migraines now makes the days that I don’t have one extra special, I really appreciate those days.
I guess if I’m stuck with a new painful illness I may as well look for the silver lining, sure is better than complaining about it.
Be sweet to another person, do a good deed, appreciate what you have, pay it forward. You will feel better immediately even if you do have a migraine.
We were told by his adult children that he was supposed to die from an inoperable, aggressive brain tumor within six weeks, that was at least three months ago. I thought, for sure, he would die when he was told his wife had passed away but, again, he was so relieved, so grateful she was out of her pain that he actually felt and looked a bit better. Nobody could change or help his diagnosis, he had an inoperable brain tumor but his spirit was so relieved that the love of his life was free of pain and free of suffering, he felt just a little better. They knew his wife was going to die in one or two days and they were correct. You could see relief sketched on his face yet he was not allowed to go to her funeral, he was in hospice care.
Many years ago, when my father laid, by himself, in a hospital room, in another state I called at the exact time when a freshly minted unsettled female voice said:”something has just happened and that the doctors are working on him now.” I didn’t understand, I had no idea what she was talking about but I remember calling my mother. I never thought about it like this but I guess I was there at his death as well. We were together and I still left him that sacred message, so did my mom. “It was okay to go, it was okay, we would take care of each other…”
The cardiologist called me and I asked him if I should come? His voice was gentle, I remember that, and he said “Sweetie, you won’t make it in time, don’t come.” ” Do you promise?” I asked through wracking sobs? “Yes”, he promised. Moments later, my father was dead. I didn’t know until a few days ago my mom had made the same call and was told the same thing. She was ready to drive there alone, in the dark, even though she was terrified to drive.
He had crashed in the hospital while under observation with a fatal heart attack. He had suffered heart attacks before. I still see that digital clock in my mind, the one my dad had given me so many years ago, well, “sold” to me even after all these years. My own children were across the hall, mere babies. I see their sweet, innocent faces, me in my bed, a moment, frozen in time. It was 10:20 pm.
I thought I would never be able to feel happiness again but I did though it was different. I was different as well. Before and After Different. That’s how I now measured my life, in a lot of things.
There are always new phases in our lives, new beginnings, new endings, new chapters, the closures, doors slammed and opened. Right now we are in the middle of a chapter and can’t seem to go forward or back, we are stuck, like dead birds smashed against a windowpane.
Eventually, we will move on. It may take some more time but life does not have to be stagnant forever although sometimes it feels that way. Turn that attitude around and enjoy what you have instead of what you don’t know. Nestle in comfort for the time being. Luxuriate in proximity, memories, familiarity and family.
Change will come, whether you are ready for it or not, it will sneak in like a softly padded black cat stealthily coming in the darkened bedroom, with only green cat eyes following every step you take.
BACK OFF. No, Really, Back the flippin bleep off. Got it? Good. I’m pretending that you are just a regular, tiny headache and I’m still in full control of my life. Sure, I’ve dimmed the lights, for a cozy, romantic look but that proves nothing. I just have a minor headache and even though I am squinting, it’s because I took off my glasses so I could see better. You understand, I’m sure.
I’m new to this world of migraines so I don’t have a whole lot of experience, do I take that preventive medicine now or am I wasting it? I don’t know. I really don’t, I guess I’ll wait, in an hour it will be better or much worse.
I know I am tired, I have been tired all day because I didn’t get enough sleep and I wish I could tell you that I had a great time last night drinking and dancing at some fab party but frankly I haven’t been to a party since my sister’s surprise party which really wasn’t that much of a surprise.There was no drinking or dancing there (at least for me) just Jane’s quinoa salad which I hate to admit, I really liked, because she had raisins and craisins and dried apricots in it. Fruity quinoa, who knew?
Why have I recently developed migraines at the advanced age of 57 years of age? I have no flippin’ idea. I got through the first one at the ER after hours of agonizing pain
and finally they gave me a shot of something wonderful so I could get some sleep and the pain eased away so very slowly. I discharged myself after the first round of medication because I wanted to be home in my own bed. My counterpart in the next bed, with the same exact diagnosis, chose to stay in the hospital and get another dose of pain relief.
Can’t say that I blame her, looking back, If I had known then what I knew now, I’d still be in that bed smiling in my safe slumber. I wish they had given me a strong medication to take with me but they don’t trust us normal pain people with “abusive substances” as if one Percocet would put us over the edge. Anyway, all I wanted was to get out of the hospital, infestation hotel of germs and creepy-crawley things.
So, do you really think I needed ANOTHER INVISIBLE ILLNESS to add to my plethora of symptoms because frankly, I thought I had enough. I KNOW I had enough. Is this some cruel joke or do you think this is wildly hysterically funny?
I’m not laughing, I’m disgusted, fed up and sick of all these unrelated illnesses that I keep dreaming about a miracle cure or at least ONE interested doctor that will take it upon him/herself to try to figure it out. Got no volunteers except the mother of a son (who used to be friends with my son) in elementary school. That’s the closest I have and I truly appreciate her interest. Nobody cares, anymore. That’s what it feels like, that’s what it is.
All those one in a million doctors that take the extra time to try to solve the puzzle, I haven’t found one yet and yes, I’ve been looking. Any volunteers? I will beg if you want me to but nobody is sending me emails or sending me SOS messages that spell out ” I WOULD LOVE TO HELP YOU ANSWER THIS MYSTERY, LEAN ON ME.”
In the end we each have our own shit we have to go through. I sure have mine. Apparently, It will stay mine forever. All mine. Because, in the end, nobody cares, let me introduce you to Medicine 101.”IT’S JUST NOT THEIR JOB, DEAL WITH IT, IT’S ALL UP TO YOU. LOOK WHO IS LAUGHING NOW, IT SURE ISN’T ME!”