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!