Ah, June!

When most people think of the month of June, they think of summer picnics, weddings, days at the beach, yummy summer produce and more.

When I think of June, I think of Myasthenia Gravis Awareness.  Because I have Myasthenia Gravis (MG), a neuromuscular disease that has occupied more of my life in the last 20 years than anything or anyone else.

Before I was diagnosed, I went to many doctors.  I heard it all:  I was just lazy, I was fat and needed to lose weight and all my problems would go away, all of my symptoms were in my head, I had an anxiety disorder, I just wanted sympathy.  You name it, I heard it.  It was devastating.  Knowing there is something seriously wrong with you and no one listening is the most terrifying thing I have ever experienced.

Finally, I *begged* another doctor in the practice I was patronizing to see me. (It was their policy to not switch patients from one doctor to another, even when one doctor is willing to let you die!)  This new doctor saved. my. life.  He took one look at me and said, "You are very, very sick." I think I cried with relief.

He ordered every blood test known to man, and the trips to the "ologists" began.  Pulmonologist, including sleep study; cardiologist, including echocardiogram; neurologist, including lumbar punctures, CT's, MRI, MORE bloodwork; psychologist (actually psychiatrist, but that's not technically an "ologist"... going for continuity here, people!) etc.  The first neurologist I saw told me I had a tumor on my spine without doing any concrete diagnostic tests.  Needless to say I never saw him again.

On October 13, 2000, 5 *years* after my first symptom, I had an MRI under sedation.  I quit breathing, turned cyanotic (blue from lack of oxygen) and they had to call a code and bag me through the rest of the procedure.  So much for symptoms being psychological; even the *best* actors or nut jobs couldn't fake not breathing when unconscious.

Four days later I was flown via helicopter to the University of Michigan, intubated, and dying.

To be continued....

If Old McDonald Had MG

I've published this before on this blog, but I seriously think everyone just needs a good dose of funny today.  So without further ado:

{to the tune of "Old McDonald Had A Farm"}

Old McDonald had MG.  Gasp, choke, cough, pee, barf.

And with MG he had some docs.  Gasp, choke, cough, pee, barf.

With some "ologists" here and some "ologists" there,
Here a doctor there a doctor, everywhere a specialist,
Old McDonald had MG.  Gasp, choke, cough, pee, barf.

And with MG he had symptoms.  Gasp, choke, cough, pee, barf.

With headaches here and fevers there,
Here a tumor, there a blood clot, everywhere a drooped eye,
Old McDonald  had MG.  Gasp, choke, cough, pee, barf.

And with MG he took some meds.  Gasp, choke, cough, pee, barf.

With steroids here and chemo there,
Here some CellCept,  there some Mesty, everywhere some plasma,
Old McDonald had MG.  Gasp, choke, cough, pee, barf.

And with MG he got no sleep.  Gasp, choke, cough, pee, barf.

With a bad dream here and a flashback there,
Here hard mattress, there no breathing, everywhere insomnia,
Old McDonald had MG.  Gasp, choke, cough, pee, barf.

And with MG he was-a-germophobe.  Gasp, choke, cough, pee, barf.

With infection here and pneumonia there,
Here bronchitis there gastritis, everywhere some hepatitis,
Old McDonald had MG.  Gasp, choke, cough, pee, barf.

And with MG he heard it all.  Gasp, choke, cough, pee, barf.

With a "lazy" here and a "fatty" there,
Here a "whackjob" there a "headcase" everywhere a mental illness,
Old McDonald had MG, {big finish...pretend you're a Rockette}

GASP......
CHOKE......
COUGH......
PEE.....
BARF!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

**DISCLAIMER**
Old McDonald really does NOT have MG.  This was written by an actual patient with an actual disease that's actually called MG.  Old McDonald is still happily on his farm.  No animals were harmed in the writing of this song.

All posts are copyrighted and the personal property of Kerri Sweeris and may not be reproduced or copied without permission.

Doctors, Doctors, and More Doctors!!

One thing that people who DON’T have a chronic illness might not think of is how many doctors I actually have.  There’s the usual ones that anyone would have: dentist, family doctor for colds or whatever, the GYN...okay not EVERYONE goes here... (I actually see my family doctor’s PAC who is a wonderful lady), chiropractor, and eye doctor.  But then there’s also the orthopedist for my wrists (carpal tunnel from typing so much because I can’t grip a pen), my diabetic specialist, my neurologist, my ENT, my pulmonologist, and my foot doctor.  That’s 11 doctors.  Plus I have the wonderful nurses and technicians that do my plasmapheresis.

In the last 16 days, I have had 6 appointments.  I have driven to them all.  I have had 2 dental appointments, a “med check” appointment with my family doc, my women’s annual exam, an appointment with my orthopedist, and my annual eye exam.  I can’t normally do any of these in the winter because of my health.  So June is a very busy month for me, because that’s when I get all the “mandatory” stuff in.

I have pheresis coming up the 26th and 28th, and apptointments on July 2, 9, 10 and 16.  It's INSANE.  Seriously crazy.  Plus June is MG Awareness Month, and then there's just life that happens.  I'm too busy to be a sick person! LOL

Numbers

Over 1,000:  the number of plasmapheresis treatments I have had in the last 12 1/2 years.

6:  the number of liters of oxygen I'm on at night so I don't starve my brain again.

8:  the number of doctors I have to see on a REGULAR basis.

37:  the number of pills I take each day.

5:  the number of "official" diagnoses I have

2:  the number of liters of oxygen I'm on right now because I'm so tired I can't keep my eyes open and have had a headache for 3 weeks.

4:30:  the time I finally get to see my chiropractor to reset me so I can walk again without pain!

613:   the number of things on my to-do list that never get done.

3:  the number of CT's I've had in the last 15 months

1:  the number of nodules I have in my lung 

4000:  the number of dollars we pay out of pocket as a maximum for insurance, that we always meet within 3-4 months.

0:  the number of my metabolism. 

22:  the number of medications and vitamins/suppliments I take every day

17:  the number of prescriptions I have to keep track of

ONE:  the number of the God who is in control of everything listed above and more.  

I consider that our present sufferings are not worth comparing with the glory that will be revealed in us... Not only so, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for our adoption to sonship, the redemption of our bodies.  For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what they already have?  But if we hope for what we do not yet have, we wait for it patiently.   In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans.  And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God.  And we know that in all things God works for the good of those who love him, who have been called according to his purpose.     Romans 8:18 and 23-28

PPPhhhhttttttt.

Don't even know what else to title this! What a day. I know I'm hard on myself, but it felt like EPIC failure. I'm so exhausted. Today was the first day alone with Jacob since my crisis. I don't know how to do nothing. But if I don't learn real quick, I'm gonna end up in the hospital again, and again, and again.

Then I deal with stuff like this:

I call my primary doc (PCP) to get the blood and sputum culture results from when I was in the hospital 10 days ago. (And after a complete round of the ONE antibiotic I know I can take, so really what's the point in even getting the results??) Anyway, it was like 10:00 this morning.

About 4:15, I decide I'm finally going to get in the shower. Phone rings before I get in. It's my PSP's nurse (She's great, actually.)
Nurse: So I've been going back and forth with Dr. _____ and he doesn't think he can treat you without seeing you, without knowing what's going on. He suggests calling the doctor who treated you.

Me: {wondering what showed up in the tests if he won't "treat" me} I have called Bronson 4 times and have spoken to twice that many people and they keep telling me to call my PCP.

Nurse: Oh, you don't have the results yet?
Me: Oh my GOSH. No.
Nurse: Ooooh.....okay, just a minute.

Comes back after a minute: So who ordered all these tests?
Me: I have no idea. They just did them at the hospital after they admitted me. They poked and prodded and tested all night long. I guess they didn't believe me when I told them it was a myasthenic respiratory crisis.

Nurse: Right. Um....Okay, let me talk to the doc and I'll get back with you today.
Me: Good. Thanks.

So I get in the shower, because it's already 4:30, and who REALLY calls right back?
This nurse.

Nurse: Okay, all the blood cultures show nothing, but the sputum culture shows some kind of staph and Dr. ________ wants to treat you with doxycycline.

Me: Staph? What the..... I've already been treated with a full course of antibiotics, and besides, I can't take doxycycline. So shouldn't the Cipro have taken care of this? It's not the "icky" staph, right? {I'm thinking last time I had staph pneumonia I almost died...if I have staph, shouldn't I feel worse than THIS?}

Nurse: Oh, no. No, not that kind. I'll talk to the doc about the antibiotics and call ya back.
Me: K.

I believe her this time, but I'm half done in the shower, so I have to finish up. Had plenty of time this time, then she called back and said, yup, the Cipro should've taken care of it and you should be good to go.

So after TEN days, I find out there WAS something but it SHOULD be gone now because whoever the heck I saw gave me antibiotics before seeing any test results.

I'm sorry, but what the hell???? I went to a "good" hospital. They are supposed to know things. Some things. I saw at least 2 different neurologists. Alllll the stress of waiting for results and calling every doctor on the planet 17 times. What a joke. And I wonder why I end up bawling at the end of the day.

I would ask Calgon to take me away but even if I did, I'd still be there.
Ya, I know.