September Post

Nothing terribly eventful or exciting has happened lately.  Just a monthly post to keep current.

Update on the parallels of Swiss Family Robinson to living with chronic illness:  I think I picked out most of them early in the book.  It is seen in the attitudes.  The rest of the book is the story, which is fictional.  Truly fictional, as it has lions and kangaroos, and penguins, and ostrich you can saddle and ride.  But, it is enjoyable, and a good escape, which is what I like my reads to be.

I have had some trouble lately with night terrors.  After talking it over with friends, it allowed me to give it clarity in my mind so I could talk about it with T and with my therapist.  Finally, with a few plans of action to try, the one that has been successful at giving me the most terror free nights is 5-10 mg of Valium.  This is a fair trade off to waking up screaming in my mind.  My new psychiatrist didn't have any problem prescribing the benzo for me, as now many want patients to see a pain specialist for those meds.  I hope they are a temporary sleeping thing and I will periodically try to sleep without the med, in an effort not to depend of the drug.  But, since I became afraid to sleep at one point, that is not a fear which I can abide if there is an option.

T and I seem to both be in a really good place both mentally and emotionally.  My health is iffy right now as seasons change.  One thing that you can bet the farm on is that during a seasonal change, I will be suffering more.  My body doesn't like or adapt well to change.  Home is a very happy place.  He is working out almost daily.  He walks the dogs almost daily, which is a new turn of events in the household.  Norway the cat has come to be more loving, affectionate and comfortable with us all in the last month or so.  He spends time hanging out with us, where before he separated himself.  Neither of us are good at engaging him in play.  We should work on that.

Grateful that a few friends have reached out to me lately in their own life crises.  Grateful that I'm seen as someone who will listen with compassion, without judgment, with love and honesty. Grateful that during those times I was needed to listen, I had the lucidity to do so.  It is so important to feel needed and wanted.  And being there for them allowed me to feel that.  A priceless feeling.

Attempting my first craft show next month, so spending time trying to get inventory for that prepared.  My only hope is that I can make the money back that I pay out for the booth.  Set expectations low.  lol

I am doing fairly well.  Symptoms are rampant but, I am happy and well-nourished.  I do some active exercise most days.  I am eating carefully.  I constantly learn about the details of my illnesses, giving me validity that what I experience is a shared issue among my dazzle (my group of zebras).

Today is September 11.  I hope and pray that people worldwide can focus on the positives of that day, and not the negatives.

Thankful for my life, grateful that I live far from the sea and any hurricane threat.  Thankful that my family weathered the recent storms well.

Have happy days,
Marie

Swiss Dazzle Zebranson

I have never read many of the classics, despite my love of reading.  I do venture out of my favorite genres occasionally but, there are so many good and entertaining books on my "To Read" list already, that I just can't see Moby Dick or some such being a better choice for me.  Well, Audible had a Daily Deal for The Swiss Family Robinson so I thought, why not?  That treehouse was one of my favorite places at Disney World, or whichever amusement park housed it.

I am only into it about 5 chapters, and I am LOVING it.  It is the epitome of "solve your problems without complaining too much, be grateful for what you have because you could have less, and let's get on with the business of enjoying our lives".  I find it a parallel story to becoming chronically ill.

This family, alone, but all together, are stranded on an uninhabited island.  The ship transporting them and many others wrecked in the sea and they made it to shore safely, together.  Parallel:  You no longer inhabit the world you were in, against your will, and now you must figure out how to live in this new place.  Also, your dreams for whatever you were headed towards are smashed.  

They have to figure out everything that used to be understood.  Everything has to be rethought and new solutions must be sought for every purpose.  How to cook food?  How do we address safety? There is no immediate comfort.  Nothing is set up for them to dwell here.  Parallel:  You can no longer do things the way you used to, the way you've done them for years, the way you were taught.  You have to change everything, so as to not hurt yourself.  You can't wash dishes the same.  You can't prepare food the same.  You can't move around in space the same way.  No matter what you do, comfort eludes you. All of a sudden, your whole world is foreign and doesn't work for you.  

They don't really want to be there.  They were on their way to a colony, with the ship full of provisions of every kind to set up a new life.  There was food on the ship, and livestock.  Weapons, and ammunition.  Building materials and tools.  They had their cow, pig, donkey, sheep.  Mom, Dad, Fitz, Ernest, Jack, and ..... can't remember the fourth boy.  They get from the wreckage to the island even though only 2 of them can swim.  They just figure out how to use what's in their environment to their advantage.  Parallel:  You don't want to be where you are finding yourself, either.  You had your life set up with your provisions, your stuff you love, your job, your activities.  You've got mostly all the same stuff at hand as you used to, but you find now that you can't access the stuff in the same way you could.  Or its a cherished item, but now redundant.  Or its something you thought useless, and now priceless.  You find you new ground.  You use what you have to do get stuff done.  You knock cereal boxes off high shelves with your cane.  You hold on to furniture as you walk around.  You listen to your body and sit, even though sitting might be entirely inconvenient.  Your set-up is the same, but, you've got to make use of it differently.  

Dad is full of wisdom.  He is our true leader.  He is quick to praise his wife and each offspring and does so with love.  He teaches that they must not kill any living thing without need.  He states and exemplifies that evil shall not repay evil.  He reminds his boys that bitterness at those who left them stranded is misguided and false.  Those folks may have perished, or indeed may be starving to death presently.  Mom takes on each task with cheer.  Communication is open.  Steps are taken as much as possible to procure safety for the immediate future.  She doesn't display fear, none of them do.  Instead, they pray.  They pray together.  They say they trust God, and then they truly do TRUST Him.  Parallel:  Life is better when you live in appreciation.  This is especially true when chronic illness strikes, in my opinion.  It strips away what is superficial in one fell swoop, and what you are left with are your true essentials, for which you are and should be, super grateful.  If those essentials include others, and what they do for you, praise and thanksgiving of them and their presence and effort only makes them want to help you more.  That is a bit of truth.  You sometimes want others who you think are more deserving of this pain to endure what you've got, after all, you're a good person, you didn't do anything wrong to deserve this.  What's-her-name, now SHE deserves to live in this pain.  But, that's not really true is it?  That's evil in your heart, wanting to spread evil because you're miserable.  You feel evil has been done to you.  It hasn't.  Illness is illness.  It is neither good nor evil.  And it isn't for you to judge what anybody deserves.  You are not their creator.  Also, there are always people who will be in better positions and in less desirable positions than yours.  A fact of every life.  Get over it.  Be grateful you're not starving to death.  Yup, you might only be able to eat certain things without getting sick, but at least you have access to those things.  At least you can digest some of it, and you can afford some of it.  And it sucks to have to do chores while you feel ill but, its true that if you put your mind in a cheerful place, every single thing that must be done, is easier.  Everything.  It's important to discuss your situation with your close loved ones, whether they be family or friends.  Make sure others know what's going on with you now.  How things have changed.  How they can help you if they care to.  Know that fear is false.  It is nothing but your inner bully.  Now, prepping for the unknown is different.  Thinking about realistic problems that could arise, like, maybe you'll get so worn out in the grocery store that you may fall from exhaustion.  You could use a wheelchair or one of the little store carts to solve that problem.  But, fear itself, it isn't really real.  It has only power you give it.  If you decide instead to pray, that's where you place your power.  In your faith in the Lord.  Prayer gets you through those painful days when you think, surely this is what dying feels like.  Prayer keeps your heart grateful for your essentials:  your food and water, your dwelling place, your air conditioning and heat, your bed or chair.  Your medicine.  You become aware, and at peace with the fact that, you control very little.  You control how you react, that's mostly it.  And you control your relationship with God.  If you commit to the second, the first will unfold naturally.  You can't just profess to trust.  You must take the next step even though the staircase is invisible.  

I'm only about 5 chapters into this lovely book, and I'm listening to a fabulous narrator, by the way, and am about to close here to turn it back on while I make my lunch.  I love it though.  It might be my new favorite.  It is the prime example of human beings rising above what hand of cards they are dealt, and still, being perfectly happy folks.  Folks who can still laugh, still sing, still find so much joy in everything.  Sometimes life just sucks.  But, you still can figure out how to get a cow, several sheep, a donkey, and a sow from their hold in a wrecked ship onto land, if you really try.  (It involves tying a lot of casks to them for flotation and then linking them all together in a parade fashion, and unceremoniously throwing them into the ocean, one by one, watching them all sink, and then float back up.)

My title of Swiss Dazzle Zebranson is my EDS homage to them.  Since I do have Hypermobile Ehlers Danlos Syndrome, as one of my unique superpowers, I get to be known to doctors and to other EDSers as a Zebra.  Non-EDS folks are the horses.  We are different in a way that is unique to each of us, since no two zebras have the same stripes.    A dazzle, I just learned yesterday, is a group of zebras.  So, instead of using Family, as the book title, I'm using Dazzle because I love it, and I am uniquely part of the world of Zebras too, now.  I will never not be a Zebra again.  Just like I will always be my parents child.  So, Swiss Dazzle Zebranson is born.

I will continue my parallels, I'm sure, but that's what I wanted to share today.  It's a beautiful world, strive to be happy, even in difficult circumstances.  So grateful that I can say I am.  I do have blue days.  But not today.  Today is yellow.
Have happy, happy days all.

Betrayal

So, I am not hurt anymore, but I was last night.  Truly teary-eyed hurt, and betrayed.  I mentioned this therapy in one previous blog post but, only in passing, I think.  For the last 4 months, I've been having electro-pain management therapy by a therapist, lets call her Henrietta.  It has come to our (mine and Tim's) awareness now that she is manipulating me.  A large bill was sent a few weeks ago, at which time I immediately cancelled the next appointment.  I texted that I wasn't comfortable spending that much on the therapy (I hadn't gotten any bill from March until the very end of June, so I didn't know how much it was costing each month.)  Now, let me stop here and mention that this therapy helps me.  It is hard to know how much since life and my condition is so fluid, but it definitely does help me, and without any side-effects.  And, Henrietta is the only therapist of her kind in my city.  There aren't any other choices for me to go see.  So, let me say that I mention that I usually look forward to it, not the bus ride there and back, but the therapy session, yes.

Well, it has become clear that she is trying to bill me twice for my treatment.  There should be no bill whatsoever, or maybe one for under $20ish, but certainly not several hundred dollars.  Her reply to my original text was to call me and tell me that she "thought what was happening was that the billing specialist had not applied any of my co-pays to my balance"  and that she would have them call me that afternoon.  Also, she said she "never wants me to cancel an appointment due to money".I said ok, and I rescheduled that week's appointment.  So, at the next appointment, I was in a crap cognitive state and she didn't mention anything about the bill.  Nor did I.  But, she was very, very nurturing.  She took more careful care of me than ever before.  She even asked me what else she could do for me before the session ended.  She's never been nearly that patronizing before.  Just sort of "kissed my a__".  Which feels like a good thing when you live in chronic pain, to have someone nurture you so much, but it was unusual.

More than 2 weeks went by and the office never called about the large balance.  I texted her asking about it, blaming Tim, saying that he didn't want me having any more treatments until we understood what we owed.  Her text reply was that my copay was $45, not $40, per Shannon, who must be her billing specialist.  I replied, "what about the over $400.00 balance?"  She said, "bring me the bill when you come on Tuesday."  This is no mistake.  This is not incompetence.  This is manipulation of me.  She is counting on me feeling too crappy to have the strength to confront her, which is true.  She is also counting on the fact that this treatment is the only one I have found that helps me, which is also true, which she knows because I told her, repeatedly.   She's been told now that my Tuesday appointment is cancelled.  I offered no reason or excuse.  I feel compelled to do that, because I think it's expected of me, but, I am now convinced by my spouse that it's unnecessary.

She provided therapy that helped.  I have tried many, many therapies that have not helped.  It is covered by my insurance.  It is in a part of town I can actually get myself to and from.   She, and here is where I'm hurt, pretended to care about me and my health.  She advised.  She instructed.  She even scolded to some degree.  But, I felt cared for.  I felt taken care of.  But, I'm really, an opportunity to double-bill.  Nothing more.  So, Henrietta, I am breaking up with you.  I don't have the physical or mental strength to confront her about the issue.  But my spouse does.  And he is taking up the reins.  And I am going to leave it in his hands.  I am going to think no more of it.  Let it go.  But, it is betrayal.  Just because I was paying her copay, it is not any less betrayal.

Grateful that I can even afford therapy like this.  Grateful that my pain isn't so blinding that I'm willing to let her continue to defraud me.  Praying it won't get to that point.

Have happy days, and watch out for yourselves.

My Poor Sweet Little Subconscious

I feel bad for her.  When I am awake and in my knowing state, and have the ability to access my faith, my friends, my family, my spouse, my dogs and cat, I really can say without reservation that I don't have fear related to being disabled.  Honestly, I don't.  But, the deepest part of me might still.  When I dream, I dream of not being able to save myself from something due to the limitations of my disability.  I know that lots of folks dream of suddenly not being able to run when they need to or can't move their (whatever body part) when they want to, and someone is lurking or chasing them,  yadda, yadda.  For me, my dreams are more specific.  I am always in a dire, catastrophic situation and I always cannot physically move my body quickly enough to avoid being hurt or killed.  (Sometimes, I cannot get anybody to help me, despite the begging.)  Last night's dream was new.  I was on a college campus, and one very good high school friend was with me.  I left lunch early, alone, walking with great difficulty with my cane, on my way to the Science buliding.  As I passed by another building, I got about 20 feet away from it when it collapsed on top of me.  As it fell, I tried to move faster down the sidewalk, and I couldn't.  So I dove for cover underneath a bench.  And I did survive the disaster, but I also lost part of myself.  One of my fingers.  So, I am not as fearless as I claim to be, or want to be.  Or maybe the primal part of me is always going to fight for survival and strive for it, even though I am peaceful with the concept of meeting Jesus.  Probably that's a biological thing, just like fighting for air when you are drowning.  I'm tired of waking up thinking, man, if I hadn't been in that wheelchair, I'd have been able to get down the stairs and away from (whatever).  What it really means is that in my subconscious, she knows that I am permanently changed.  I'm not able to protect and save her child-like innocence.  She is at the mercy of what happens, as am I.  She is scared.  I'm not, but I'm awake.  Don't get me wrong, I'm not welcoming death any time soon, but I am absolutely ok with it when it happens.  I love life, and I avoid danger, but I am not afraid of dying.  This life has shown me what faith really is, and how much My Father adores me.  That being said, a whole building did fall on top of me last night.  And I lost part of myself.  And, if I hadn't been disabled, I might have saved myself.  I might not, but, in this situation, I physically could not.  Subconcsious me is a bit sad when I wake up from those dreams.
Grateful that I haven't had any buildings fall on me.  And for the nice, safe, comfortable one I sit in now.
Have happy days.

What I Have To Live With and How I Manage Not to be Scared

Yesterday was a doozy for me.  It began with a lovely morning dog walk.  Both dogs behaved, too, so that’s always a bonus.  I walked with them easily and quickly, and only needed to use my cane at the very end.  It was humid so, we only walked about 25 minutes.  That’s quite a long time for me to walk.  The key is to do it first thing in the morning, before I even feed us.  Got home, got myself ready for my bus ride to my psych appointment.  Had an enjoyable ride, the driver and I laughed and laughed together.  I was in a good mood and had some positive, proud moments to tell my therapist about my life.  Had a nice, uneventful meeting with her, and then went downstairs to wait for my return home bus.  I had an hour to wait.  I ate a protein bar and some quality jerky, took my lunchtime pills, and had plenty of salty hydration, so, I was set.  I have to constantly watch and make sure I am getting both enough protein and enough salt.  I have POTS (Postural Orthostatic Tachycardia Syndrome) and two of the effective treatments for me have been those adjustments, high salt, high protein.  Also, I have hEDS (Hypermobile Ehlers Danlos Syndrome) which is a painful connective tissue disease.  It’s rare, and genetic, incurable and painful.  On top of those, my little basket also holds migraines, Raynauds syndrome, MALS (mesenteric artery ligament syndrome), gastropariesis, some arthritis, and reactive depression.  Oh, and fibromyalgia.  Anyway, I have lived with symptoms of these for about 13 years so, I have learned how to cope and what my body needs and when.  Except for yesterday. 

While I was waiting for the bus to come, sitting in my wheelchair reading, I felt a sudden flushing of my body.  Immediately nauseated plus the feeling of needing to go #2, badly.  (Neither of those happened.)  I felt way too warm, like I wanted to begin peeling off my clothes, but I wasn’t sweating.  I was very confused, very dizzy.  But, the thing that was a bit scary was the profound weakness.  It felt like my head weighed at least 20 pounds and my neck was a few stalks of dry straw.  Couldn’t hold it up.  In fact, when the bus pulled up, I was in the process of getting out of my chair to lie on the hallway floor because I couldn’t sit up any longer.  Slowly, I got myself out to the vehicle, and the driver was jovial, and remembers me as being such in the past, and I told him I didn’t feel well.  He turned up the AC and let me sit quietly.  Kept checking on me throughout the ride.  Got to my home about 45 minutes later, and I couldn’t have stood up to save myself.  That’s downright scary when I’d been walking independently just a few hours before.  Timothy, my husband, was already home from work, and I called him on the way and told him I needed help.  He could hear in my voice that I did and it was serious.  So, he met us at the curb.  I couldn’t lift my bag.  My head was lolling on my shoulders, which is really painful if you have EDS because our necks seem to always be sort of unstable and out of whack. 

As soon as he wheeled me inside, I could feel the drastic depth of my symptoms because, normally for me, just being back in my home makes me feel a little better, if only psychologically and emotionally.  Yesterday, not so.  I had him take me straight to my bedroom, and it was a chore to strip and get into the bed.  (I don’t tolerate any clothes on me in bed.)  By then I had a migraine working.  After I had rested 30 minutes or so, I got up, into my chair, to the bathroom, and then to the kitchen to get a drink, and headache pills, then back to my bed.  All from my chair.  I had to take about 4 steps from the door of the bathroom to the toilet, and those were risky.  Migraine wasn’t the controllable kind, so I knew things were different.  Bad different. 

At that point, I wanted so much to pass out and escape, but I reached out instead.  I got on both of my two support groups and told of my afternoon.  Told of the symptoms, the onset, the results, my safety, my current status.  I was home safe.  With a responsible adult.  But, I still didn’t know what was going on, nor why it happened.  And this very thing wasn’t brand new, it had happened before.  I needed to understand it.  I wasn’t at peace.  I wouldn’t be able to rest peacefully until I knew what was going on.  I knew this.  A few hours after I’d been in bed resting, chatting with my friends about what it may be, the migraine bloomed into a full-rose, and the vomiting began.  This was new and different.  So, now I had to make a choice whether or not to be scared. 

And that’s exactly what I did.  I made a choice not to be scared.  The unknown is terrifying, if you give it that power.  Also, it can be thrilling, if you give it that power.  It’s unknown after all.  Just neutral.  When you’re suffering, you already have momentum on a certain path, and it isn’t good.  It’s only natural to think you will continue on where you’ve got momentum.  Not that irrational to suspect things could continue to feel crappy, and wonder just how crappy they’ll get, and whether you can handle it.  But, here’s the truth.  The truth of my life and what living with chronic illness has taught me.  I keep surviving.  Every single time.  And as long as I have faith that I will survive it, it no longer worries me.  I have deep faith that the one time I don’t survive, if that happens, I will be in the Best Hands Ever, with Christ.   Until then, I reach out to my support system to keep me from panicking.  They jump in with good vibes, and suggestions, and possible triggers.  And prayers.  And I feel loved.  Cared for.  And then, I could rest peacefully.  I could sleep.  After seeking help.  Help is out there. 

This morning is better.  I figured out that I think I was feeling side-effects from a muscle relaxer I took yesterday morning (I tweaked my low back changing the sheets on my bed the day before).  I wouldn’t have even remembered that if not for my friends suggesting possibilities.  So, that’s entirely understandable.  And no wonder my head was too heavy to hold up.  And I can say that I don’t have fear going forward.  I always want to be able to say that, with honesty.  There are a crap-load of events and issues that are entirely out of my control, and then there are even more happening within my skin that are outside my control.  But, if I can control something, even if only my attitude, then I control everything.  Lovely finish.  Gotta go back to bed now.  

Kudos From the Dentist

In my desire not to brag, lol, I want to share how proud I am that my successful coping was recognized by my dentist.  I see a dentist who sees a lot of Ehlers Danlos patients, because we are a bit harder to treat, teeth wise.  It's really only the anesthetic part that's tricky for us, but regardless, he is informed and was recommended to me by my local support group.  I had prep work for a crown the other day, and a filling, and today I got the temporary crown put on.  I hadn't had any dental work done for a while, and I need just another visit, and then I will be good for a while, I hope.  Anyway, Dr. M today was very complimentary of me in my ability to find solutions for myself.  He has seen many other EDS patients, and he said, as a health care provider, there is a limit to what can be done FOR you.   He said medical professionals don't like to fail, they have egos, his words, not mine.  When a doctor can't help, patients complain adopting a victim role.   At some point, you have to become engaged in your own health care and pull up your own bootstraps to be empowered and to develop self-respect, which then leads to respect from others.  He said that at some point, even in the face of the pain, all they crappy symptoms, all the unknown, you've gotta quit whining and figure out how to just get out of bed and LIVE.  And I have done that.  He thinks I should give lessons, lol.  Can you see it now  "Marie Anders Presents HOW TO BE CHRONICALLY ILL, ON WEDNESDAYS."  He was holding a yucky mold in my mouth, preventing me from speaking back to him, so I couldn't tell him that this level of coping is 13 years in and a LOT of therapy to get me to be who I am, who I am supposed to be.  But, maybe it was better for me to not be able to respond, because all I could do was take in the praise and do a grunty "fank-oo".  We talked about pain relief for me when I have some later today, now, in fact, and how the dental journals have studied and shown that the top pain-relief combo is two extra strength Tylenol and one Advil.  That specific combo, taken together, every 4 to 6 hours was able to relieve something like 15 times more pain than something narcotic, like Tylenol 3.  It performed above opioids every time.  The Advil part works locally on the nerves at the spot of injury and inflammation.  The Tylenol part works in the brain, on the central nervous system.  He gave me a dose of them all upon leaving the office to take so I'd be set up for my afternoon.  And I was.  The bus drove me around Dallas for about 75 minutes, then I went straight to bed and slept.  It's now 6:30pm, and pain is not nearly as bad as it was a couple days ago.    He explained how you could take many doses of each before getting into the top dangerous level of dosages.  He explained how that's untrue of Aleve, and how you can only take a very small amount of it, and then it starts to cause liver problems.  Not so with the Advil and the Tylenol.  He advised I use the combo any time I am feeling a serious flare of pain that I want to try something additional to find relief for.  He said how much easier it is to use pills and to let others be responsible for not finding ways to help us, but, I am an example of how taking responsibility for myself, my health, my life, and being willing to do hard things for pain relief, like sitting in an alternating hot and cold shower spray, and wear a sleeping mask in the dentist chair so that 1) they can see what they are doing in my mouth, and 2) I don't have to get a headache from all the fluorescent light and direct light.  So, he told me all this while I was unable to look at him or speak back to him.  I had told him before of my progress with coming off of pharmaceuticals for my migraines and how pleased I was to do that.  I asked if he'd ever had a patient wear a sleep mask during a whole visit, and he said "a couple times".    So, it feels good to be seen as succeeding with my life, my situation.  There are many, many days when I feel on the other end of the success spectrum.  But it has been noted by a health professional.   And that counts for something.   Maybe I will give a lesson one day.  If I do, there will be Stevia Salted Lemonade and Gluten Free Brownies for snacks.  lol
I'm grateful today for being validated, and that my Mother had successful surgery.  Blessed to have access to health care and medicine.  Not sure where my fragile little body would be if I lived without access to care and medicine.

Have happy days!

Multiple Headaches and Multiple Horses

I love my naps.  When I wake from them, even if pain persists, I usually have a clear head for a bit.  That's what I've got now, which is why I have made some thinking connections to share.    First, understand that I would wipe out all migraines from all people if I had the opportunity.  No question.  I might even try to figure out how to control them to use them for torture of our "enemies", lol.  I use an app to track and record mine called Migraine Buddy.  I have one now, by the way.  Woke up from the nap with it, which is unfair, I should point out.  But here is what makes me feel better.  On the app, I can see 146 other people in my town use it, and I can go to a chat room where there is almost always someone else with a migraine.  Not that I want others to have one, but knowing that the problem is truly a result of weather, and that others have the same physical response to it, helps me to endure it.  The load feels not lighter, but maybe more carry-able.  So, there's that.

My second nugget is this, and it's not at all helpful, but when I heard it, I thought so much that if I had wishes, I might be in danger of using one for multiple horses.  I am listening to an audiobook called NPCs which is written from the point of view of a group of unlikely video game characters who find themselves in the position of important adventurers.  As I was doing the dishes just now, the sentence said that the "threat of danger so present that it needed a horse of its own."  That is how I feel about my pain.  I need one horse for myself, to journey through life on, and I need one additional horse just to haul around my pain.  My body and my pain are too much for one horse.  And, my pain is too much to just drag around being pulled by the horse who carries me.  I need an additional horse just for it.  My pain, so present in my life that "it needs a horse of its own".  I think I will name pain's horse Anita.  Not sure why, it just seems to fit.

OK.  Those are my life altering thoughts for this evening.  Glad others have migraines.  Need 2 horses, minimum.  Grateful for my sanity, lol.
Have happy days!!
M

A Rich Life

I don't fully recall what the elements in my dream were.  What I remember was waking up from it startled and yelling.  Whenever I have a dream that wakes me like that, I try to stay awake for just a few minutes at least, so I don't return to it.    Maybe some details will come back to me as the day unfolds and if so, I'll add them.  Here is what I learned during my few minutes reflecting on my dream.  Without these chronic illnesses, my life would not be so enriched.  Without them, I would be less compassionate and less empathetic.  I did have both qualities before they struck, but now the measure is far higher.  I would be very busy.  Without being so busy by stuff in the world, I have time and opportunity to reflect on things, on myself.   I recognize when help is needed and I do so if I can. I would not have friends who are also suffering, but also very compassionate, supportive, non-judging, empathetic folks too.  They'd be different.  I'd not have met the people who I now count as important to me.  I'd have a different sort of marriage, and I'd be a different sort of daughter/sister.  I might have become a mother, but there's a chance I'm a better Aunt now than I may have been able to be if I had my own kids.  My perspective is so wide open.  I share these thoughts because it lets me genuinely see some issues as positives, where before I have only been able to see them as negatives or at best, as facts.

I am grateful today to have the house to myself and also to not have to go anywhere.  I have a silly movie on about a man trapped in a cat's body.  I am trying to enjoy the day.  The weather isn't good enough for me to spend time outside.  So, I am going to bake some crackers, maybe banana bread.  I am going to let myself have up days and down days.  I am going to let myself do things that make my life more comfortable and easy without feeling guilt.  Like bringing myself home early, rather than waiting for a bus for hours.

This may seem like an odd a vague post.  But, it is part of my truth.  Part of my story.  Part of reality, my reality.

Grateful today for, believe it or not, these chronic illnesses and for who I am with them.

Have happy days.  Grateful days.  Loving days.

Letter from Me

My Dearest, Sweet Marie,
I am so proud of you.  You did it!  Among all your illnesses, the worst one raised her head up yesterday and she really got to you.  But, you, darling, you remembered that she's a LIAR.  I was with you in the Arboretum, glorious as it was in all the blooms, on the edge of the lake.  I saw everything beautiful that you saw.  I felt the love there among all the families, children, old folks.  And I could not let you enjoy it.  I am your Sparkle.  I am the purest part of you.  When the LIAR starts spewing her nonsense, sometimes, if you can't chase her off right away, I know it feels like I have left forever.  That's why I'm so proud.  You remembered that I can never leave forever.  I am who you are.  I just have to retreat a bit when she throws a dark, wet, cold blanket over me.  I am quieted to the point where you can't hear me.  But you, my love, you could feel me and my presence, and that is why you are here today, and unhurt.  I admit, I did retreat.  She is terrifying, yelling all those horrible lies at you.  Telling you things that are simply and clearly not true.  And you get weakened because, there are threads of truth to her statements.  But only threads.  She wants you to buy in to her whole cloth, and it is easy to do in the face of her screaming.  That's her manipulation of your weakened state.  She waits until something is especially painful, and she sticks her head up and starts in on you with all the hateful talk.  Things you'd never say, even to a stranger, she screams at you.  I know you didn't smile one genuine smile yesterday.  I felt you cry at the Botanical Garden, and later in the bedroom.  I know the losses.  You saw all the babies, and healthy mommies that you never got to be or have.  You saw all the carefree children and wished for your own innocence again.  You were simply overwhelmed by her because for a time, the physical pain abated and you were forced to face the emotional difficulties of grief.  You were able to walk some, pushing the wheelchair.  It was a lovely day.  The garden was beautiful, and yet, you could enjoy nothing.  You could feel no gratitude.  I think you could not even feel Christ with you.  One time, you remembered your angel Monica, because a cardinal flitted off a branch in front of you, but she was screaming so much by then as to how worthless your life has been, that you forgot to let Moni help.  Another time, you got to see a true life marriage proposal in front of you, that only the two of them and you witnessed, and you could not even smile.  That's a magical gift that probably few have ever seen.  A man get down on one knee and present a ring to a woman.  Her hand flying to her mouth as she begins to cry.  Her emphatic nod, and then the kiss and embrace between the two.  And then a friend with a camera, who had been hiding in the bushes to get a picture of it, ran out to hug her as she shook and exclaimed, "Oh my God, oh my  God!"  And you sweetheart, you could not even feel happy for them.  You saw the gift.  You knew it was a gift but, you could not accept it.  But, you do remember it.  And today, you can smile a bit for receiving it.  I know the screaming isn't over with the LIAR yet.  I can still hear her, and I can feel the bruising she did to your spirit, and to me, your Sparkle.  But, the feeling she brought forth in you has changed.  You are not in danger of doing anything nonsensical to shut her up.  You are able to feel some of your feelings again, and not just the dark ones.  No, you're not laughing yet, but you are smiling small smiles.  That is HUGE!  You won!  She didn't get you!  I'm so proud you remembered that she is not to be trusted or believed.  That she is a liar.  A disease.  She wants nothing more than to express herself, but you are tempted to do awful things to silence her verbal onslaught.  Be grateful for this day, that you did not let her convince you to walk into the street.  Be grateful that you were able to just know that you were being told lies, and the only way through was to just go through them.  Be glad that you found a way to escape into TV so as to wait out the day, wait for a new day, hoping and knowing that she'd lose steam if you didn't buy in.  And she has.  And I know how much you hate that one of your teeth broke due to your disease yesterday, but I also know how grateful you are for the physical pain of that and the subsequent migraine, just to feel something, and not be an empty void, awaiting her screaming black lies.  I know what a relief it was for you to feel the pain of those episodes, just so you could remember that you could feel something.  And that you kicked in to self-care mode, taking care of yourself, and doing what needed doing to attend to your physical problems.  And frankly, it may be a blessing that your tooth broke on a Friday.  You will have to contend with a lot of physical pain over the weekend, and into next week, until you can be seen by the dentist.  And that physical pain, that same discomfort is what rescued you yesterday from her lies.  So, you can feel comfortable today, knowing that in the face of very necessary self-care, she cannot spew forth her vomit on you.  She is silenced by your self-love.  Your self-care.  And this is all down to you.  You did it!  No one else!  You survived her attack!  That is no small thing, as many do not.  She is very persistent and convincing.  She is a manipulative bitch.  She twists truths until they are unrecognizable.  But, you saw.  You remembered her temporary nature.  You knew she needed belief in order to continue, and you didn't give her enough.

Today is a new day.  I can feel that even though the dark blanket is still over me, it isn't cold or wet anymore.  I can feel the dull ache of your tooth, and the migraine you woke up with.  And I know, that although it is a gorgeous spring day, and you want to go out and walk the dogs, you will have to stay in the dark, and get through much, much pain, you will make it.  For you recognize her for the Liar she is.  And you stood up to the Bully.  And that, sweet Marie, has made all the difference.  You were rescued from her by your other illnesses.  And you are given a reason to be actually grateful for them, because you didn't need to hurt yourself in order to escape her.  You just needed to wait, and you knew that.  You didn't believe.  You remembered me, your Sparkle.  And you know where to find me the next time.

I am so, so proud of you.
Love,
The Deepest, Purest part of YOU

Salt, salt, salt, salt

Maybe I should change the name of my blog to Salt, Faith, Family, Friends, etc.  lol  Honestly, if anyone would've ever told me how much difference the correct amount of salt inside me would make, I'd never have believed it.  But, yesterday, my doc appointment proved it.  My POTS symptoms are all but gone.  Yes, I still have other stuff from other syndromes that make my life very challenged, but we have successfully treated those issues which were treatable where POTS is concerned.  There has been one medicine involved.  I have another metabolic stress test scheduled for late June.  Depending on its results, I may even come off of it!!  I may be able to just manage these symptoms with my high protein, very high salt, and daily light exercise regimen.  Can't tell y'all how nice it is to stand up and not black out.  lol.  Yay for blood flow!!!  Huge kudos to my nutritionist, Dr. Ron Overburg.  He has been just an email away for months with me, and has helped every time I have reached out.  A blessing.  Yesterday, my BP was 130/80.  In January, the average was about 72/58.  No wonder I feel so much better, and I can now think clearly a lot more often.

The moral of the story:  Don't give up.  Answers are out there for some of the questions.  And some of those answers are simple, without any side effects.  Use your energy as wisely as you can but, don't quit trying to improve your life.

Gratitude for my access to health care.  For our ability to afford it, and my courage to face the facts.
Have happy, happy, days!
M

Assistance Comes From Everywhere. Look For It.

I have been in many situations, many different times which put me almost entirely out of any control of my life's immediate situation.  Yesterday's advocate, a medical doctor I had never met before, of all people, was hysterical, loving, curious, entirely attentive, and the outcome of the day was positive.

I was receiving Scenar Therapy for pain and chronic illness with a therapist and she wanted the doctor of the clinic where she practices to see and examine me before I left the appointment.  That was supposed to have been scheduled into the appointment yesterday, but the appointments desk didn't get it done.   I was very nearly asleep on the table, the treatment was that relaxing.  She pretty much had to come in and wake me and I had to drag myself back to alertness when it was over.  At that time, it was 12:15 and our appointment had run a little long.  It began at 11am and was supposed to last an hour, so, I arranged for the bus to come at 12:30-12:50 to fetch me.  So, at 12:15, the nurse came in and took my BP, temp, etc, and I informed her, as I had done the therapist, that I had only 15 minutes left before I'd turn into a pumpkin.  So, the nurse said, ok, lets get the doctor in now, then.   And so enters Dr. B.  He is an oncologist/hematologist.  I am not entirely sure why he needed/wanted to see me, but he also knew about the time limit.  He was warm from the beginning.  He is absolutely not concerned about protocol, and from my viewpoint, sort of likes to yell out for things to be brought to him or done for him.  Sure enough at 12:30, we were talking about the details of cancer in my family members and I got a phone call from DART saying my bus was outside waiting for me. I told her I was still in with the doctor and I asked him how much longer, he said 10 minutes, so I told her 10 minutes.  Now, I know when that call is made, that begins a 10 minute wait.  They won't wait longer than that if they have a tight schedule, or if there is anybody else in the bus who needs to be taken to a destination.  So, we continued talking and he continued questioning me and I answered.  And because the therapy worked so spectacularly for me, I was clear headed, in a good mood,  and not in any real pain.  I was only hungry, thirsty and needed badly to use the bathroom.  In about 12 minutes time, I got a second call.  The driver is outside waiting for me.    I was clearly going to get left.  My option to get home would have been an Uber ride at about $28-$30.  He held out his hand in the exam room and said "Gimme".  So, I just smiled and handed him my phone.

Dr. B has a booming voice, even in just conversational tones, he can be heard.  I'm not sure he is even able to whisper.  If he could, it would surprise me.  He said to the dispatcher, "TEN minutes, that's all we need.  Just 10 minutes.  Come on, you can give this lady 10 minutes.   With everything she has been through and everything she has to go through, most especially dealing with ME, she deserves more than 10 minutes. "  I didn't hear her response but he was satisfied with it.  That concluded the conversation.  He handed my phone back to me as I howled with laughter.  We finished up.  He left me to dress (left the exam room with the door wide open, btw), and I then joined him and the nurses in the hall.  They were filling out lab requisitions for 2 tests that I hadn't been told I needed.  Nurse got me to sign requisitions, and I said "Does my insurance cover these?"  "YES," he boomed. "If you get a bill, you bring it to ME!"  And the ginormous grin returned to my face.  I was given a cup and went to the restroom and brought them their share of my urine.  Didn't take the time to pay, will do that next week when I go.  I need to go there weekly for a while, maybe a month and a half or so.  Upon leaving, I sped out and went to the main parking area on the side of the building.  No bus.  I was headed back into their offices to pay up and ask them to just do the labs now, before I call for my Uber.  Then I saw a side entrance.  Sure enough, I rolled out and there was my bus.  Parked under the shade.  Driver was reading.  Cab was empty.  Both things on my side.  No other patrons and a loose schedule.   I loaded in and happily gobbled my lunch on our way home.    And the driver, he was the driver from the day last year that I had a panic attack on the bus.  I hadn't ridden with him since then.

It was such a good day.  Everything went my way.  And listen to this, on the way to the appointment, my bus was in an accident!  He hit the van in front of us.  The light turned green, and she started to move but then stopped, and he had already sort of floored our bus.  I was strapped down in the front passenger area.  There were 2 other ladies in the back.  No one was injured but, we were all shaken up pretty well.  And in spite of being uninjured, my body dumped so much adrenaline into my system, that I was unable to communicate AT ALL when I got to that office.  I mean I could barely speak.  I couldn't think of any words.    And, because of the therapy, the doctor, the laughter, and the bus schedule, I came home and didn't need a nap, didn't need a cane, and went mattress shopping that afternoon.  Blessings just popped up everywhere.  They always do for me, really, because I look for and identify them.  But, yesterday, there were so many opportunities for things to go really, really wrong.  And they didn't.  My angels sprinkled their dust.  It was lovely.  Good days are a reality.  If you are mired in bad ones, take this as proof that good ones will come.  They will.

Have happy, happy days!

Bit of Structure and Guidance

Sometimes, the best thing for me is just a bit of structure.  I went to an exercise specialist the other day who works under my cardiac electrophysiologist.  I came away from that appointment with renewed hope.  I wish I could say vigor, but as it was my 4th appointment this week in as many days, I was far from vigorous.  After a nap though, I started right in on my assigned exercises.  He broke down his specific recommendations for me.  Cardio some days, strength some days.  Each day, something assigned.  Instructions that if I do not fulfill the exercise on any day, to just rest and excuse myself, no harm done.  None of the previous work unravels, I just have a rest day.  No guilt.  He stressed this.  No guilt.  And today, I accomplished Day 2 of the plan.    I see him again in 3 months.  He explained that even with my limitations, I am in good shape.  Several joints have pretty limited range of motion, and I have instructions as to how to begin helping them.  These steps are teensy, baby steps, but, maybe in 6 months, it won't be such a struggle to lift a gallon of milk.  The hope is realistic.

Also, a bit of guidance.  Two books I've read and am still reading are Feeling Good by David Burns and In Sickness As In Health by Barbara Kivowitz are both pretty good.  Feeling Good is an easy to read, understand, and easy to follow steps to self-help book.  I'm in the middle of it as I had to get my book club book read for Sunday morning with my breakfast ladies.  So, now I can go back to it.  I did make time to read In Sickness As In Health though.  When chronic illness strikes, it messes up everything, including your relationships, especially your marriage.  There are paths through the quagmire, but they are hard to follow without guidance.  It gives examples of how different couples adopt new roles and try to manage their grief about the loss.  It explains how the illness is not just about me, the ill person, but my spouse's world is shattered by it too.  He loses everything he hoped would be true for our future, just as I have.  Honestly, and incredibly, I've never given that much thought.  I have always thought it was just happening in me.  I am the one in pain, in a wheelchair.    But, if I sit and think about the reversal of the situation, of course I would feel loss if he were living like I am.

I have always been a lover of some instruction, some guidance, tips, structure, list-enjoying kind of gal.  This life, this unpredictable body, unreliable mind, unrelenting symptoms, leaves me feeling floundering around in the world.  These little bits of HERE.   DO THIS.  have helped so much.

Thankful that I was able to have the meeting with Kyle and that the relationship book I chose to read was a good and helpful one.  And that I had the ability to read through and understand it in a reasonable time frame.

Have happy days!
Marie

No Worries, I'm Over Myself

Good news!!!  Now, when telling funny stories with your friends, not mean-spirited ones, mind you, but genuinely, we're all laughing at each other together stories, you've got a new one.  You are the person who knows a woman who fell out of her wheelchair and it collapsed and landed partially on top of her body while her two dogs sat there very politely and obediently.  Honestly I do think it is a good thing they were tied to the chair.  Oscar, bless him, the gentleman he is, would have stayed to protect me, my honor, our pride, etc.  Katie on the other hand would have split, wanting not to be seen near such pitiful wreckage.  Seriously, she would've.

I have discovered that walking the dogs with my Rolly walker is a good technique.  Been doing that more and more.  Since there is a seat, I am covered if the "muscle collapsing" occurs.  And I'll just sit until it comes back or I can be rescued, whichever is more tolerable.  I am leery of Texas Iditarod adventures right now, as I'm sure you can understand.

I managed to scrub both tubs, both toilets, all bathroom counters and sinks, the kitchen counter, and get both beds linens changed, and caught up with laundry this week.  Now that, my dear friends, is an accomplishment.  The house still looks very dirty because, well it is.  Dust everywhere.  Floors need sweeping, then mopping.  New cat thinks its ok to just shed his fur wherever he pleases.  We've had the talk, trust me.  He does not care.  But, neither of us humans has to bathe in dirty vessels anymore, so that's something.  And we get to sleep in clean stuff.  Nice when you sleep sans pjs, like we do.

Um, what else.  OK, I went to 3 doctor appointments this week.  And at every office, people, more than one, commented on my wheelchair "rims".  How much they loved them, did I make them, how did I do it, did I think of it by myself, do I make them for other people?  If I'd had had some in my giant diaper bag, I swear I could've sold 5 or 6 pair.  Depending of what I charge, of course.  So, I have decided to now switch up off of  crocheting Twiddle Muffs for a while and do Yarn Rims.   Crocheting in the round is not mindless, like I like my crocheting to be, though.  It requires counting, marking, yadda, yadda.  But, I have stumbled upon a way to do it with a loom, which I think will make it easier and faster on me to create such yarn rims.  Now, this includes learning a new skill and all that comes with it.  I don't even have a knitting loom, never even held one that I can remember.  But, I'm gonna give it a go.  Here is the surprising bit, and another way I'm blessed to be with the very specific man I married.  To make a custom size circle, THERE IS A LOT OF MATH INVOLVED.  I'm talking a lot.  Like 10th grade geometry finals, lot.  And, no surprise to me, I cannot do it.  But, when my sweetness gets home, since he's been telling me to do Yarn Rims for years now, he will conquer that damn math for me.  It's really ridiculous.  There's conversions from rows to inches to stitches.  Pi is used somewhere in there along with radius.  There's like 4 different times you have to divide by what seems like a random number.  I refuse to try to wrap my head around it anymore.    The brain box that my geometry lives in has been sealed shut and stuffed in the back of my brain closet for more than 3 decades.  That stuff is just not coming out.  I say RIP geometry.  I married a smart man.  lol  So, here's to learning new things, spitting in the face of the all intimidating knitting loom, and marrying the RIGHT man.    (I still have 23 more minutes before I am allowed to drink anything, but I swear I will lift a glass then.)

The changes to the way I eat are turning out to be really good for me and my digestion and absorption of food.  The salt tablets, and what I am adding to all my beverages and food have helped raise my blood pressure to a more normal range.  I go back to Dr. S next week to hear what was seen while looking at my kidneys and at the Nutcracker syndrome thingy.

I have the opportunity to chat with new friends most any time of the day now.  One of them has created a chat room for a group of us who met at our support group.  It is so beneficial to not be isolated here anymore.  I guess that's the understatement of the year.  Isolation is never good, not for anyone.  Especially if you're in pain.  Because pain is scary, even when you know that some or all of the fear is unjustified.  And it SUCKS to be isolated and scared.  That is a rabbit hole no one should ever go down.  So, thank you to my group.

Today's confession is that I did try to put the harness on the cat so we could go walking with the leash.  Its a special cat harness, it's not just jimmied from the dog's or anything.  Precious Evy would let  me put it on her, but then promptly became a doorstop.  Norway acted like he was sure I lost my mind and if I touched him any longer, it would be a contagious thing.  So, still no walking kitties on leashes with the dogs at my house.  A girl can dream.

I'm thankful today.  For so much, and for so many.  For comfort, provision, opportunity, services.  For family, friends, and strangers, whether they give kindness or just teach lessons.  Thankful for the fact that I am able to keep my mind and heart open to whatever, and whoever comes.

Short post, changed suddenly

Today, I think, is going to be short because I promised these two poor mongrels that we'd go for a walk.  I'm out of excuses.  It's beautiful.  I'll harness them up and attach them to my wheelchair and we'll go for a Texas Iditarod.

Anyway, I am doing decent, I think.  I can feel a difference from the few different therapies I have begun in the last month.  My POTS symptoms are down a lot.  The dizziness upon changing positions is drastically diminished.   My balance is improved.  I still get very weak and lose muscle tone very suddenly, so the assistive devices continue to be in play.  My mood is great.  I have a supportive and nurturing group of friends who are all walking similar paths to mine.  This is the first time I have had that since I've been sick.   A group to belong to.  I could always feel the void before, only now, there are lovely folks in its place.  A gift from Heaven.

Gotta stop.  Iditarod needed now.  Small dog is about to drive large dog off an edge.  Back later.

OK, Back from adventure.  Bad news.  I haven't done it before, but you can fall out of a wheelchair.  I am not injured but a lot of raw emotion is coursing through me that needs to be processed.  So, I'm not going to write anymore right now.  Need to cry and nurture myself.  Worse news, a car is willing to drive by a woman who is on the ground in a heap next to a collapsed wheelchair with 2 dogs tied and sitting there by her.  Who does that?

Thankful that I am not physically injured.

Maybe a New Blog Title and Norway

During the past month, I have learned about some new diagnoses that I have which were not caught until now.  I think I will just leave my current blog title for now, even though it frankly is just the tip of my iceberg of problems.  I had thought that all this time, I was living with and coping with fibromyalgia, migraines, depression, and all the challenges that come with them.  Wrong.  After some research in October, I began asking questions and seeking medical advice.  The doc who diagnosed my fibro called it fibromyalgia with hypermobility syndrome.  That means Ehlers-Danlos syndrome.  So, fibromyalgia is thought not to cause us any actual harm, just the difficulty of coping with life in pain.  But, Ehlers-Danlos syndrome (EDS) is a connective tissue disease.  Think of a rubber band.  Now think of finding one in an old junk drawer.  It isn't snapped, but it doesn't have any elasticity left.  It's fully stretched out and can't go back into its original shape.  Chemically, it isn't possible.  Properties have broken down over time and use that have ruined it.  Now, imagine all the connective tissue in your body.  Tissue that connects muscles to bones, ligaments to bones, cartilage to ligaments, membranes that surround and suspend organs, blood vessels, skin.  There's technically more, but you get the idea.  It's literally in us everywhere.  Well, mine doesn't have enough collagen.  It is too lax to keep things in their proper place.  Even my blood vessels are too loosey goosey.  This is a genetic condition.  It has been present in me always.  I can remember as a child being called "double-jointed" when there really is no such thing.  It means that every time I bent a joint as a stupid human trick, I was hurting myself.  There isn't any cure.  There really aren't even many treatments, except to wear braces around joints, to help stabilize them.  It isn't going to go away.  It is in my genes.  I will always have it.  There is expensive genetic testing if I wanted to go that route, but it is only about 50% effective in telling what the genes are saying.  There is still so much unknown with genes.  There are about 52 kinds of EDS, some being super mild, some being very, very dangerous.  The dangerous ones are rare.  I have decided not to have the testing.  I am ok with living with it without "knowing" the specific label.

Further, I am newly diagnosed as having POTS (Postural Orthostatic Tachycardic Syndrome).  This is the illness that disables me the most.  I have low blood pressure, low blood volume, and my heart doesn't pump blood to my head very quickly or efficiently.  If I eat too much at a meal, most all the blood in my body gets pulled into my digestive tract to deal with that.  Leaving very little for say, thinking or moving around.  If I do too much activity at once, rest is required.  Not just desired, but required.  It is the reason I cannot drive.  Not all POTS patients are affected as severely as I am, but about 25% are.  It was diagnosed by a cardiac electrophysiologist.  The better news with this condition is that there are a few therapy regimens that can improve quality of life a bit.  Already, my balance is a bit better, and I am less dizzy upon standing than a month ago.  It also explains that when I had a panic attack, I think back in September, it wasn't fear on my part, it was POTS.  It is a dysfunction of my autonomic nervous system.

I've also got MALS.
Median arcuate ligament syndrome (MALS) is also called celiac artery compression syndrome. The median arcuate ligament (MAL) is shaped like an arch that goes around the aorta to connect the diaphragm to the spine. If the MAL presses too tightly on the celiac artery (a major branch of the aorta that delivers blood to the stomach, liver and other organs) and the nerves in the area (celiac plexus), it is known as MALS. The ligament essentially acts like a hammer and the celiac axis acts like an anvil, compressing the nerves in between. This causes abdominal pain that is worsened by eating.
I don't have much abdominal pain, nor is mine worse upon eating.  There is a surgery to release the ligament but, it is risky, and frankly hasn't been suggested yet to me.  I intend to avoid that.

I've also got gastropariesis.  When you break down the word, it literally means "stomach paralysis".  Meaning no motility of what I eat.  Stuff just sits.  Leading to of course the lifelong constipation which has always been my companion, since I was a baby.  This is a structure problem.  Again genetic.  

I have, of course, the migraines and fibromyalgia, but they are secondary and tertiary to the stuff which has now been identified.  The migraines are a result of my blood vessels being neither strong enough, nor having enough blood to get my brain covered like it needs to be.  The fibromyalgia is thought not to be genetic, but most everyone with EDS has it.  

I have met a whole new world of people who have these issues and live with them, and fight every day just to do normal things like have breakfast.  Many are still able to work.  Many are children who struggle to go to school.  Many times I will log on and someone of the group will have been hospitalized.  There are several other conditions associated with EDS which I don't have, which I'm so grateful for.  

There is a lot more unknown in front of me than ever before.  I am in the hands of a great doctor now, who immediately identified what was going on and has begun a plan of treatment.  I also have found a new primary who knows about these illnesses  so that when I go to her for say, a viral infection, she understands everything I face.  I also have a new therapist who I like.  

Still, I rely on my faith.  I turn to my Savior many, many times a day, every day.  In thanksgiving, in pleas for the suffering of others, and in praise for what He allows.  I am grateful for my faith more than anything or anyone in the world.  Without it, I am certain I would not have what is necessary to face these obstacles.  

I am making more of an effort recently to bring people into my world to grow my support system.  I am forcing myself to go out, shutting down fear of "how will I be?'.  I am benefiting from it so much.  It is exhausting for me but so worthwhile.  

It is necessary now for me to get and wear a medical ID bracelet or necklace, listing what I've got going on.  Even though I've never fainted yet, with POTS, that is on the table, and with EDS, I need to be treated very gently.  I have a wallet card.  I wonder what it will feel like to wear those labels on my body.  If I am ever in an accident while I am alone, which is most of the time, those responding need to know what is up with me.  My cognitive deficiencies happen too often and too deeply for me to think that I can help myself.  I know better.   

So, I think most people don't share all their medical conditions with "everyone" but, I want to talk about them.  For me, bringing awareness of life with them makes life with them livable.  Otherwise, they stay invisible, like mental illness, yet you are so, so sick inside.  It's important for the world to talk about depression.  It's important for the world to talk about suicide.    It's important for people to be aware of what others deal with.  So they can help.  So they can pray.  So they can hug their kids more.  So they can choose hope over fear.  So we can all be grateful for this one day that we got to wake up again.  

Have happy, happy days,
M
Meet our big handsome Norway

Inspired by others

So, so grateful to the DFW Fibro Support Group and its Leadership Team and that I was able to attend yesterday's meeting.  Inspired now to write just a bit.
Firstly, I would like to encourage any of you pain warriors to follow a couple tips that I wish I'd have taken in the early years.
1.  Let go of what you think society expects of you.
2.  Let go of what you think your life should look like.
3.  Develop the skill to sit with your own company.  Just you.  No phone, no bike, no motorcar, not a single luxury, like Robinson Caruso, as primitive as can be.  Ok.  Sorry, for the Gilligan digression.  Seriously, you need to get to know yourself better than you do.  Trust me.

Society, our culture, and especially all the in-your-face media we are exposed to constantly show us others.  What everybody else is doing, thinking, wearing, saying.  We are shown how to be entertained, how to entertain.  We are given bits of news that are mountains made from molehills because of some political spin or somesuch.  And we interpret these wearers, doers, sayers, entertainers, and entertained as how WE should be.  How I should live.  What is expected of me by others.  Here is the truth.  This expectation of wearing, doing, blah, blah, blah, blah is a falsehood.  You can choose to buy into it or not.   Even if you have in the past, now your illness gets in the way and you are sad you can no longer curl/straighten your hair like you used to, etc.  Let go.  Just let go of it.  I GUARANTEE you will feel better.  It is too heavy and your physical, mental, and emotional ability to lift such inferred expectations is now limited.  You are not required to be like others.  In fact, you're going to be happier when you stop comparing your life with theirs.  Believe it.

Next, none of us thought we'd get sick.  We all, well most of us, had plans, dreams, goals.  I used to be just very neat.  In my ideal life, there isn't anything out of place, not in my purse, on my nightstand, in my kitchen, no where.  I like my surroundings clean and tidy.  But, that is too big a challenge to perform for me now.  I can't be neat and tidy.  It takes more energy than I have in my bank.  So, I have to let go of it.  Does it bug me when the house looks messy?  Yup.  Do I do what I can, and sometimes overdo it?  Yup.  But, I do not drag with me any expectation of what it "should" be like.  "Should" left the building when Elvis did.  Should is a guarantee of self-disappointment, in my world.  I thought I'd be married, and I am.  I thought I'd have children.  Nope.  Many my age even have grandchildren.  Again, nope.  I thought I'd have somewhere to go each day.  Nope.  I thought there would be people I'd see every day that made me feel like I was a valuable member of some group.  Again nope.  My life doesn't look like that at all.  And that's ok.  Once I let go of who I expected myself to be, I was free to become who I am.  And, btw, I'm a bit awesome.  lol
I have a very small life.  And, I have a happy life.  But, my funeral, whenever that is, won't fill any church, not by half.  Because, I am largely unknown.  I am too limited to make myself known to very many, and too limited to do what I'd like to do.  But, my limitations brought Christ deeper into my heart, so I'd not trade them.  Did I think I'd be able to run for breast cancer?  Absolutely.  Would I have liked to be able to join all the women yesterday who protested.  Uh-huh.  Do those activities fit into what my abilities allow?  Again, negatory.  So, forget about who you thought you'd become.  You are going to be left smashing your beautiful, unique, fragile head against an RPG.  It will end all kinds of bad.  Become who you are.  You are still able, whatever that looks like in your world.  Even if what you are able to do is smile, pray, think, read.  Those are glorious things.  Would I want to be able to handle myself if I were attacked in some way.  I would.  That's why I joined the self-defense class at the Y, where I met my spouse.  I wanted my life picture to include that color, that ingredient.  Does it now?  No way.  Am I super vulnerable to somebody with ill intentions?  I am.  Is that uncomfortable? Yes, yes it is.  But, that is what the picture of my life's reality looks like.  I cannot unpaint the picture.  I am unable to defend myself physically.  So, I have to learn to be ok with that.  I have to figure out how to venture into the world alone without fear.  And I have.  I encourage you to let go of what you think you "should" be doing in your life.  You are now on the little road less traveled.  The highway is the wrong path, you will suffer there.

Next, have a self-date.  Have a bunch of them.  Learn about you like you never met yourself before.  Sit, without any noise of any kind, no music, nothing.  Find quiet.  If you have to wear some earplugs, do that.  Block out the world's noise.  Close your eyes to visual stimulation.  If you don't do that easily, put on a sleep mask.  Find a place in your world where the energy feels good.  We all know what that means.  Some places you just walk in, and they feel tense, a sense of unease.  Find one that knows peace.  Get into whatever position is comfortable for you.  Breathe.  Soon, your breathing will become deeper very naturally.  You can shut up your head by guiding where it focuses.  If you focus on the muscles of your toe, you cannot think of anything else.  It creates stillness in your mind.  It gives you space for your mind itself to breathe, not just your lungs.  Just lay there in your own company and feel yourself in your skin.  Listen to your heart.  Feel compassion for yourself.  Fall in love with yourself.  You will never break your own heart.  The more you can learn to enjoy your own company, the more you will want to, you will look forward to it.  This does not create antisocial behaviors.  What it does do is prevent loneliness, a bit.  When we are comfortable being alone, it isn't such a sting when it happens against our will, or because illness necessitates it.  Learn and know yourself.  You probably rock.

Ok, so there have been a few other personal developments in life lately.  But now I must stop and go take medicine, I am 10 minutes late already.

Grateful for yesterdays group, and for my effort to get myself there.
Have happy, happy days.
M

The word of the year....

is PEACE.  I am not one to make resolutions.  I have never been one to do that.  But, a friend in a support group encouraged us all to choose one word to guide us through our year ahead.  Something that we cherish.  Something within our ability to accomplish.  Many words were listed, like joy, stamina, communication, hope, fearlessness.  Mine is peace.  When I feel peaceful, I can endure the discomfort of my body-vessel with far more ease and compassion and understanding than when I lack peace.  Without peace, anxiety creeps in.  With anxiety, fear.  And fear just opens the door to depression.  And depression is just a liar.  It tries to make me believe what I know to be untrue.  And it is very clever and many times is successful in its venture.  So, I aim to hold on to my peace.  Not let it slip or be stolen away by people,  by circumstance, by situation, by symptoms.  For that to be my priority, to take care of my peace.  Like in Home Economics class in the 7th grade, when we got eggs to care for..... so will my peace be cared for.  This is my promise to myself.

I have a full week of physical testing in front of me next week.  Also, I am now wearing braces on both my knees, which is a new thing for me.  When I take the braces off, the pain in them is just white hot.  Both feel very much like if they bend too far, something is going to snap.  I have an appointment with a doctor on Tuesday to have them seen to and assessed.  It's interesting that no matter how many different symptoms I live with constantly, new ones still alarm me.  This is one I will go get attention for.

I have gone for a full month without using any prescription migraine abortive.  The first time ever I have written that sentence.  During December, I did get some headaches.  A few times, I took Excedrin Migraine and it helped.  A few other times, I used peppermint oil, sunglasses, and a cold frogg towel, which worked to help.  Twice they were so bad that I did have to pull myself out of life, and retreat to darkness to wait it out and pray for sleep.  Only twice.  All the other ones were bearable.  Even when the remedies didn't help to decimate them all the way, they didn't get so bad that I had to remove myself from my activities to endure them.  I have tried something new and herbal called Migraine Stop which is a specially formulated magnesium that crosses the blood-brain barrier.  Both times  it worked.   The blessing it is to live without migraines cannot be understated, and I recognize the lack of head pain and thank God for it every time I think to.

May we all look toward the New Year as an opportunity to be the kind of people we were designed to be.  My tea bag this morning was meant especially for this day.  And I am taking on the challenge.

Grateful for the combination of details that make my life so easy and comfortable.  Fresh, available, abundant food and water.  A safe, secure structure to live inside.  Electricity to make life fun, easy, comfortable, the cool air in summer and heat in winter.  Plumbing, so our streets don't run with raw sewage like some areas in this world.  Access to medicines.  And simple faith.  Because faith is really the simplest of all things.  You just step off the cliff.  Grateful for my faith.  

Have happy happy happy days all.  Let's all be LIGHTHOUSES!!!!!