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