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Four Angels and a Cigar – Part 2

The Mayo Clinic – Rochester, Minnesota

My incredible husband (my guardian angel) took me down for the first few days of appointments.  He was an incredible help – not only because I didn’t feel comfortable driving (with dizzy spells), but he also commandeered the schedule and guided me to where I had to go!  For the rest of the week, my oldest daughter Alex (another guardian angel) took over.  I was so thankful for their guidance and company – the whole process was overwhelming.  (I realized after I published Part 1, the title should have been Six Angels and a Cigar!  Tim and Alex were beyond angels!)

It was 7 days of appointments…only 2.5 hours the first day, but the other 6 days were 6-10 hour days at the clinic.  Add in two more trips in June for a total of about 2 1/2 weeks more at the Mayo…I was poked, X-rayed, MRI’d, spun in a chair, tied down to a table so they could flip me up and watch me almost pass out, sat in a capsule (during which I pretended I was captaining a space ship), and gave enough blood for all the mosquitos in MN to be jealous.

Now, let me sideline to say…spending 6-10 hours a day in any clinic is exhauuuu(yawn)sting(!)…but this place is amazing…I highly recommend you take the art tour through the clinic (hopefully not as a patient).  For those who can’t, I’m sharing a few photos we took, with the names of the artists listed below:

Remember to always admire the beauty and blessings!

Artist Credits:  The incredibly amazing hanging glass sculptures are Chihuly glass sculptures (click to view Darla Hueske’s pictures).  The incredible plate-glass vase is by Sidney Hutter.  I’m so sorry for not getting the artists names of the dancers and the couple…if you know, please insert it into the comments. )

OK, back to the story…

The diagnosis’:

Orthostatic Intolerance which explains the head rush and fast heart rates when I stand up.  I have limited autonomic neuropathy – which means my nerves in my legs aren’t working right.  Normally when you sit down your blood pools in your legs and when you stand, the nerves activate the veins/arteries to send it up all the way to your head.  Mine doesn’t push it up fast enough – no blood to your head = head rush feeling.  During the test, my blood pressure dropped down to about 90/60 (at 1 minute)…and my heart rate sped up by 28 beats…at 5 minutes my heart beat was up 44 beats and my blood pressure wasn’t much better.  Can medicine make it better?  Yes, they can make you even more tired and the doctors didn’t recommend them for me.  Diet ideas?  Yes, but get this…to improve the symptoms I’m supposed to have LOTS of salt and more caffeine.  Remember the last post?  Meniere’s Syndrome?  No cure, but diet recommended is LOW salt and low caffeine.  Sheesh.

On a side note…there’s a certain “YES! Fist pump!” feeling about finally getting an answer that makes sense of your symptoms.

And yet…I shake my head (and roll my eyes) at the balancing act I get to play.  I’m standing on the middle of the teeter-totter trying to keep it even.

1acircuselephants

The surprise of the visit was a diagnosis Joint Hypermobility with symptoms of Ehlers-Danlos Syndrome – type 2.  Two doctors actually said I have EDS – however the Geneticist felt otherwise.  Either diagnosis – the joint hyper mobility and/or the EDS brought the information that explained the aches/pains/joint issues that I’ve dealt with all my life.   It explains the cause of the C1/C2 and C5/C6 issues which cause migraines…the cause of the lower back/sacrum twisting issues (which can happen just by rolling over in bed).

It makes me wonder if my Mom had this with all the health issues she had.

With three new diagnosis…I went for a couple more tests…things were all good until…(guys, just quit reading here please)…I saw the Urologist NP.  Great gal…nice visit…until she told me that I have Level One Cystecene.  Not familiar with it?  Neither was I.  She said – your bladder is starting to fall.  I looked at her and asked with all the ignorance in the world…”Where?” (as in where is it falling to?).  She said well, if it gets to a level 3 or worse, it pushes your vagina down – and can feel (and literally be) like it’s falling out of ‘there’.

My honest to God reaction?  ‘ARE YOU KIDDING ME????’  And then I burst out laughing.

After all the other diagnosis’, then they find this?

Don’t get me wrong…they can fix it when it gets bad enough to go ‘there’…they tie the thing back up with netting…whoohoo!?!

Of course my next question was:  how can I prevent it from falling further?  She went on to say – ‘NO heavy lifting will help, but sometimes it just happens with age’.  Hrmph.

One more funny about this situation…I’ve been told for years not to do heavy lifting because of my joint issues.  Have I listened?  Yeah…NO.  Remember the fully torn rotator cuff tendon?  Major listening failure.

Wellllllll…let me tell you…nothing makes you stop lifting heavy items like the threat of your innerds falling out of your va-jay-jay.  Yikes!  No more heavy lifting for me…no way…no how!

There were a few more diagnosis that were just confirmations of things I already knew, along with a visit to their Fibromyalgia and Chronic Fatigue Clinic.  Interestingly enough, I thought Chronic Fatigue was a stand-alone diagnosis…meaning there’s no other cause for the exhaustion.  Well, they call mine ‘Multi-diagnosis Chronic Fatigue’…so many choices causing me to be tired…whohooo…which to choose to blame it on today!  (Just kidding…I do have a strange sense of humor at times, but hey – what else do you do?)  I’m up and functioning – don’t get me wrong.  Some days are better than others, I’m told not to work too many hours in a day or I’ll wear myself down (and make my health worse).  I can keep doing things as long as I take a break to sit down for a little rest in between.  Certain days I just need to succumb and rest…period.  Such is life…and on we go.

Anyhow, the Mayo visits came and went…no miracle medicines but at least there are answers and now I know what I can/can’t do…and dietary ways to improve my health.

Part Three will explain the title in the story of Four Angels and a Cigar.

Stay tuned…

Patty O

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