“Be ashamed to die until you have won some victory for humanity.” Horace Mann

you cant be great for others if you are not working on your own ish.  cleaning ones own house.  take the bark from your own eye before you point out the bark in another..

Say Anything...

Apparently my topic of choice while under the drugs in the hospital was talking about vaginas (and my vagina).  I thought about apologizing to friends and family but, they should  be use to it by now.

All this to say in that aftermath of almost 3 months from close Death, I am more obliged to say what is on my mind.

In the movie, Say Anything, the female antagonist is encouraged by her father to say anything to him.  sometimes in life you need those people you can say any off the hook thing to them.  from fear of DEATH to shopping to random unicorn gifs (Marium on those gifs though)

I am really grateful every day for sisterhood and bromance.  for nonjudgmental and unconditional love.

one of my longtime gal pals reached out and felt horrible about not being more present.  Love means saying you are sorry.  there was no hard feelings.  when you have a strong foundation, you dont sweat that stuff.  relationships are the most important thing in the world.

wings of forgiveness

my therapist (thanks to Lisa for the idea) gave me some visualizations techniques on my wellness.

I had a moment in shower this weekend, where I found myself taking my hands over my heart, and apologizing.

Apologizing for the past three years of neglecting my own health over EVERYTHING ELSE

People who were not even supportive or for me.
Folks who were just takers.
my moms health
stuff for family
friends
WORK WORK WORK WORK WORK


but as I forgave myself,  I was giving myself permission to not have to live life that way any more.

and all the trivial petty drama for your mama stuff, DONE.
people coming to me last minute with a supposed crisis, done

it probably will prune the FAIRWEATHER friends, but that is good.

everyday  i will take time out to be grateful for the body that failed and should have died, but still here.

from a fellow girl who use to be a big girl

this top five from her, totally on.

http://www.mindbodygreen.com/0-13018/5-things-i-miss-about-weighing-more-than-300-pounds.html

Magic Wand

my therapist each session ask me if I had a magic wand, what would I do.


thats a lot of power.

sometimes I think about work.
taking note of what I have done right or wrong and wanting to deal with the wrong differently.

it takes a while for me to get to my own health and wellness.

i think its not just a reflection of where I place myself, but it is also a reflection of how I am treated by others.

Chronic Illness has no end time...The importance of ride or die friends

We always joke that if you were ever in trouble with the police or needed someone to bail you out of a situation, you have that basketball squad or dream team to help you out.

I talk about it all the time, personally and professionally.

When you have a chronic, or two chronic illnesses, there isnt an endgame (well death is the endgame) but when folks keep asking for updates, things dont change like that.
there are bad days and good days, but it may take three years for me to see results that make me feel anywhere close to normal or a new normal.  there is no magic wand.  this is for the long hall.
asking for help and getting help has been a learning curve for someone like me who thrived on independence. I am so grateful for the folks who has seen the good, bad, and the ugly and despite the ugly, loved me broken anyway.  all of my gratitude.



Thanks to all the homies that have grown with me and passed me :)
Thank you for having my back when I was against the wall.  Thanks for dealing with me being stubborn.  Thank you for remembering I was built for steel but I am a softy, whew.  Thank you for LOVING all of me.  the parts that are not pretty.  If I have ever held a grudge or made a poor decision, that you didnt allow that to define me.  Thank you for seeing the good in me and the greatness that has yet to come.  Thanks for supporting all my foolish ideas and helping me let go of a million poor ones. I am grateful that I am not full of myself and I laugh at me first.

Gosh, during grad school, we did Buckeye Blizzard, and Kerry Hageman and others agreed to serve on a janky committee I put together and plan new programs on a no budget.
We came up with a film on the aquatic center.  five people came that first year.  BUT THEN 100s came the following years.  we dont get credit for it, but happy that folks enjoy it.  do we still joke about that blunder and first time, yes.  but it taught us lessons and that starting something doesnt mean you will see it blossom.  And we thought we were right about a lot of things, but experience has taught up to check ourselves.

Lessons like those made with friends stay with me.  they push me to keep trusting my zany self and when others try to meddle, I go back to years of training, professionally and personally and remember, I can still make mistakes but I would be angrier if I didnt try and TRUST myself.

Real friends run along side you.  They give you space when you need it, crowd you when you thought you didnt need that.  and understand the marathon not the short term.  there is a shared vision of growing old and rocking on a porch talking about all the times that Death, Fear, Failure came for you and we survived.

my illness may have no expiration date, but I am better bc a small army of folks are there cheering me on.

Having a sense of humor

I love to laugh.  I went months of 2015 not laughing.  that is not how I will do 2016 and into 2017.  I almost died, Im coming back.  I deserved this shirt

And it was all yellow

the muppets do yellow

this is a love song.  why is it on my blog?

well you have to make room for love in your life.  all the kinds of love.  you dont want to be a bitter person.

I have always been a person who loves.

even when love betrays you, sometimes abusive, sometimes hurtful, you cant let that stop you.

just like coming back from death, and people will tell you to live life, you also have to love.

Love G-d, Love yourself.  Love somebody else.


and I happen to like yellow.

if i knew then what I know now, I would have advocated for mama pat differently

having gone through all this I would have advocated for mama pat differently.  understanding my own body, which is connected to hers genetically, I would have stood up and not just be the baby sister going with the leadership but step in.

you dont know what you dont know.

mama did a form of cardiac rehab.  and as I do mine, I would have made her have rehab all the time.  kept moving.

I would have been more vocal about her tumor situation.

hindsight is 2020.

all my gal pals are doctors, but mama got sick 11 years ago.  we as a group didnt know what we know now.

but would I advise people who are taking care of a parent or grandparent reach out to folks like us who have those stripes or if you have friends who are social workers or health care professionals...

you could be on disability...

a nurse said that to me about the progress I have made.  saying that she was proud of me...  wow.  I never thought about not working.

trying not to read into things, but it makes me also thing of the stigma that folks with chronic health issues and how they move forward while folks judge them (us) that we may be milking the system.  ha this is so not the case

most people with chronic illness, you dont know what they are going through

If I give up or give in, I will die

When you think about sometimes how every day is this struggle, folks see you and are clueless that pushing forward when your body is pushing against you is so hard

my new tshirt is "everything hurts and I am dying"  its a little tongue in cheek but it helps me to laugh

someone like me

today i met another youngish person who is diagnosed with the same autoimmune disorder and had my specialist for it.

she was so happy to know me, I think.  I gave her some tips right on the spot.

i gave her all my info.

I hope I can be helpful to her.

Doing the most with the least

I hyper extended my knee at rehab.
So in trying to push myself I hurt myself. After serious reflection the past few days I realize my pride had drank from the juice of dealing with all these folks saying YOU look good.

It's so hard to push against. So I'm internalizing this shit.

How do you resist the machine. This social machine of influence even when you're a person who
pushes against it?

So I'm stuck between rehab and literally the pain of having going through it in this isolating way. I get bitter of folks who have high functioning parents who are useful.
I'm bitter of friends who have supportive and loving partners.
I get in my feelings sometimes.

I miss the fun dance party queen me.

Broke and broken.

Keep moving anyway.

knowing procedures so you know when to be scared or not scared : Echogram, not too scary

the echogram is basically the similar device used for ultrasounds.
same jelly ish.
same wand type thing
not invasive.  doesnt hurt.

you are only half naked. and they give you a gown at least.

so this procedure, low anxiety.  its dealing with the fall out that is the worst... stay tuned

RIP tshirts, black people.. please

To my squad. please dont let anyone make one those RIP tshirts, I am vain but I hate that ish

aint scared of dying, afraid of not having enough time to live....

lots of big appointment check ins this week, and of course it makes me reflect on the fragility of life and not taking it for granted, and at the same time.

for me dying isnt the issue.  I almost died.  I was there.  in the grasp of Death.
Its the lack of living that is scary,
not having enough time to Love and love.
Did I forgive the folks that needed forgiving?
My cruise to Africa to make up for all the vacays I never took so I could work.

friends bdays
seeing all the hard work come to fruition.


Life gets complicated like that.  and frustrating.

womp womp

just be in all the feelings...

my condition is not my conclusion

Hold On

James Fortune, James Fortune & FIYA

encourage yourself in the Lord

I was happy today to have a song in my heart...

I know you’re praying for a change
To see a sunny day
Nothing good has come your way for so long
You need someone to understand this place your heart is in
You just want to dream again and believe

Your skies may look dim and grey
But know your breakthrough’s not far away

So hold on
You are too close to give up now
You have so much to live for
Remember what you prayed for
Hold on, please don’t let go in this season
Know that flowers bloom when rain falls
You just hold on

You ask when will this go away
Know that God can feel your pain
Believe He’ll never fall short of His word
Sometimes we forget that He holds us His hands
But I’m reminding you don’t give up

Your skies may look dim and grey
But know your breakthrough’s not far away

I know you’re praying for a change
To see a sunny day
Nothing good has come your way for so long
You need someone to understand this place your heart is in
You just want to dream again and believe

I’ve been where you are
Almost at the breaking point in my life
I know you say it’s impossible
But you’ve got to hang on cause it’s just about over

All of your dreams
All of your desires are coming to pass
So I’m telling you don’t lose your faith
Hold on to His word don’t give up

Your skies may look dim and grey
But know your breakthrough’s not far away

I know you’re praying for a change
To see a sunny day
Nothing good has come your way for so long
You need someone to understand this place your heart is in
You just want to dream again and believe

That is one bad B*tch..

When ever I think of my old body, I think of this fearless chick.  Easily I would lift up things and people.  I was thinking back with gal pal Liza in one of her recent visits when we were helping our other homie gal pal POSH move. and I carried a fridge on my back, and the only bad thing that happened was that my pants got caught and fell down and Liza had to come pull them up while I had the fridge on my back.

That bitch was a strong bitch.

As I sit here in this weaker, paler form of myself I brood about the fact I can barely lift ten pounds.  and definitely nothing above my shoulders like in this picture, as I fling a human on my shoulder.  with ease. I would have the I wish factor, I wish someone would mess with me so I could take them down.  

Now I hope.  I hope I dont fall down in a public place and need help getting up.

again, looks are deceiving,

As I saw an old colleague from DYS downtown and the first thing out of her mouth was about my body.  the first thing out my mouth was well, im sick and I was on life support...

Yeah, dwell on that.  feel bad.  before you open your mouth think.  Or dont say anything and just talk shit behind my back like everyone else.  bc my tongue, is quick as ever.

I'm sick and tired of being sick and tired.

How you feel today?

I have to really figure out how to answer this question when people ask. I say I'm on the mend. For folks who really care I may say something more. Many days I feel shitty. Shitty is the new normal for right now and I just push through it. I have talked a lot about side affects. The auto immune disorder affects my joints. That's every day pain. All day. Every day. And you just deal with it.

Days that rile up the pressure and disorder directly affect my body.

My mind is the driver but my environment does affect a lot of what my body responds to.

The new normal is creating boundaries that promotes m own wellness and saying no. No 9 pm meetings. No 730 am meetings. Work cannot be the driver bc it literally is trying to kill me bc I allow my life to be full of it.

MEDS and meds and scripts and management

just a quick reflection around getting prescriptions filled.

depending on your insurance, without a heads up, there could be a change in policy.  so when you need heart meds refilled, before the weekend, bf your next cardio doctor meeting, you may have no meds.

lesson learned, ask about meds that are more than a month, bc the policy may be different.  We need to be sure that asking insurance questions are on the list. It's really difficult.

Just something to keep in mind.

Ive Had a Terrible Horrible no Good Very Bad Day/week

Everybody someone sees me and says I look good, I was like do you see my cane and how hard it is for me to walk?

DO you see me on this struggle bus.  nope.  they see the performance of wellness.  I am going to things, making meetings, accomplishing stuff and so that means I must be getting better.

I have actually plateaued this week.
Last night for dinner I ate a boiled egg, some cheese and crackers.  Does that sound fuckin well?
I want to have the appetite.
I am better eating when I am social.  So tonight gal pal Beth came through and we broke bread together.  It had been 9 hours since I had last eaten and I had went to cardiac rehab. half way through I do the force feed without even finishing my meal.  yeah, I look great.  please stop saying that.  it really gets on my nerves.  you literally have no idea if I feel shitty or well.

DO you need more than a cane and this diffrib?
you need me to still be in a wheel chair, or not wear clothes that are nice,
high functioning doesnt mean I am well.  sometimes I am just getting by.

This is not wellness, this is a hot messness.

animated terrible horrible no good very bad day

Alexander had it right, sometimes things dont go your way.  you plan as man and G-d laughs.

you sit there in pain and a person says how good your hair looks.
you self advocate for a chair without wheels so you dont fall getting up.

Sometimes you just listen to your body and go to sleep before ten pm,  like tonight.

How to Forgive

Forgiveness of self and others?
a great poem that I have pinned for my recovery


Forgiveness is 
taking the knife out of your own back
and not using it 
to hurt anyone else
no matter how 
they hurt you

Whole Damn Year

I get a lot of questions around how long it will take for me to get "well"

as long as it takes?

I see that my muscle recovery and things associated with my auto immune disorder taking a year or so.  But I  will live with it indefinitely.   #battle

I dont know about the heart situation.  As I find out I will probably blog about it, but healing takes time.

whole damn year by mary j blige

great video and song about surviving trauma.

now its a part of my comeback swag

side affects 345435734375

sometimes you just cant win.  you treat for GI back up and then you go to the toilet to much.
or then you get constipated.
Drugs are a mess.
and they is messing with my once very regular body before drugs.

Looks are Deceiving... clearly some folks aint reading or get it

So Im feeling a type a way.
I changed my facebook post to a very fashionista pic that I liked bc of the skirt.   I am actually in almost nature by Uncles garden.  and I am happy spending time with fam.

Im offended by some of the responses.
Im two months from death and I gotta get folks all the way together.

If I look good bc of clothes and some make up and I combed my hair that does not equal that my body is better.
that just means I have adorned my body.  I am wearing something dope.

All the things apply that I write about, and there is plenty I dont write about.  Like getting ulcers or open wounds and having to nurse those.  With my immune system being suppressed and getting cold easily, I am more likely to get them.  Especially on my fingers.  the knuckles.  the tips.  They hurt bad.  and being naturally clumsy,  I bump them or people bump into me.

eating is still a challenge.  I usually force myself to eat more than once a day.  meds bother me.  etc.

So lets not get it twisted.  Just bc I am making an effort to not look like I was dying bf I actually almost died etc, doesnt mean I feel good or that I am better.

I am mostly THE SAME.  nothing changed that big day to day.  Ask me in a YEAR.
Then I will probably actually be BETTER.

looking at a smaller body with smaller clothes.  STOP.
Its frustrating enough to deal with other foolishness.  do we not see the cane and heart machine in the picture.

when those are gone, lets applaud a stronger body.

rants not over, Im sure it will continue to happen.

hey G-d, its me, margaret aka Patty Jr, That book is more meaningful now than ever

Gal Pal reminded of the book a year ago, and I never read it as a kid so I bought it and read it.  was like great.  forgot about it.

But these past two months though.  smh.  I keep thinking about Margaret's petition in the book.  the simplicity of her ask and the pure audacity of her words.

my words are similar.

Hey G-d, its me your servant Patty.  and I am angry.  angry at my broken body.  angry that i feel sick every day.  angry that I neglected taking care of myself.
angry at fake supportive people
angry at family
angry at some friends
angry about shit that dont concern me
angry abou the govt, healthcare, kids not having resources,
G-d I am angry for being angry

some of it is the steroids but some of it is righteous.

We aint really cool right now, Lord.
You still sovereign.  you still omniscient and omnipresent.  I am not coming incorrect before the Throne of Grace.  Im not twisted about my role and how You roll.
But Lord.  I am weary and tired.
I am limited by my circumstance and happenstance to do the things I felt you have put me here to do.

And its me.  Lord, I thought we were homies, I know that you call me friend.  But I feel betrayed.  by folks, systems and sometimes, yes, even you.

sometimes there is no praise in my heart.  and that makes me sad.

But you have been faithful even when I am not.  So thank you.

Until next time.
-Patty



Many times it be just like that.  wrestling or choosing not to wrestle with the Lord.

it aint over til its over ....2 months since life support

I dont have much to say about it.
I almost died two months ago.  I am on the mend.  For the time being I am a cyborg.  I am pieces of my former self.  I fight against the plight that tried to take me out.  I am plowing to gain my independence again and not be so dependent on my urban family though I know they are there for me.

I am not at the point where I have yet to share something profound or learned.  I am just grateful to be HERE.  I want to tell a story about how I Made it over.  I have a story, but it aint over.  This journey to recovery is at its beginning and I am working as hard as I can, maybe sometimes too hard, but working hard is not new to me.

bear with me yall, as the Saints say "please, be patient with me, G-d isnt thru with me yet"

"youre the only one with a defrib"...thanks girl, i know

These PTS at cardio keep failing in being able to answer questions or having a conversation above 5th grade.

I feel like they come for me and dont eve know it.

Like today, I said something about the olympics, she thought I asked when they were.  TV with olympics on in the back.

I said I am american, I know when and what the olympics are, I was saying my friend is a fencer and he is competing.  yeah, shut the fuck up.  I dont understand why this group assumes their patients are so dumb.

I am augmenting this arm exercise bc, I got it from my REAL PT, dont come to correct me, ask first, Im not here to just hang out.

I cannot wait to give them more feedback, between the nutritionist and this team, I am turnt all the time...

I have to always remember to bring my head phones, bc the music also sucks.  #icing

Sometimes you just dont feel like going to rehab

you can think of a hundred million things that you rather do.  and the meds that drag you, your passion that motivates you takes over.

what other choice do you have?

not be well.

learning to be kind to my body when its 2 months of rehab and three years my body gone unchecked and slowly decayed.

fight the fatigue.


side affects from meds are prob part of it:
uppset stomach or throwing up
restlessness
feeling sleepy
dizziness
headache
upset stomach or throwing up part two
stomach cramps
dizziness part two
headache part 2
cough

I have had all of these symptoms

so when people ask if I am "ok" or you look good, patty"

I am battling the internal issues

and i still work to be productive

meeting the nutritionist.... this heifer

So anyone could do this job.
I finally met with a nutritionist assigned to me and she gave me this sheet.  See below.  First of all, the foods are based on a diet that is really American.  What If I were identifying as another group...it basically caters to old white guys, who, based on the numbers, are the ones attending cardio rehab, and I SEE it with my own eyes.  the issues are this is also why professionals are not ready for diversity or other SES.

an 8th grader could have printed off this sheet and asked me questions, I HAD ALREADY ANSWERED from a clip board/

Her: how is your blood pressure
me; have you looked at my rehab numbers, they are great (could she even do any work, any, just look at my data on the my chart feature)

Her: what do you eat for meals?
Me: ummm Let me give  you example of last week... all I make from scratch... indian, stir fry, chicken salad etc it depends on if Im entertaining or just making for one.
Her: Oh
Me: (internal dialogue- I filled this out)

Her: well it looks lie you have the diet part under control
Me: yes,  I dont have hypertension etc bc I am purposeful in the kitchen, it is where I do chemistry, I have worked out a lot of my wellness there esp. in this recovery time.  I have to do protein bc of my autoimmune disorder.
Her: well you need to work on 30 grams of protein after these workouts so you can help  your muscles.
Me: Im working on that  its hard to eat whn you are NOT hungry
Her: you want enough to be the palm of your hand
me (internal: thanks, I learned that in middle school health class, is this your master's level expertise)

Her: well do you have any questions..
Me: well I want to talk to you and the student shadowing you about health care access and disparities and how expensive the food you have listed here is... (me on the throne delivering, think kanye and jay z)

Me: well im done thanks.

...I got nothing from this meeting.  I hope she got schooled by me...
welcome to class