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