Monday, May 21, 2012

From Grieving and Resting ... To Healing

I have only shared the following with a hand full of people... When I was at the Mayo Clinic in March, three doctors thought I had a rare disease that has a horrible prognosis. If the "still under research" medication didn't treat this disease, I would only have one year left to live.

I have almost lost my life before. This wasn't the first time for me to hear these type of words. But for some reason, I was very certain that I didn't have this disease, and refused to let this information and possible prognosis upset me.

I felt as if I was giving life to this disease if I told anyone about it.

Fast forward two months to the present. I received a phone call from one of my doctors at the Mayo Clinic; and praise God, I don't have this disease. (The test results take a long time to process.)

Not many days after hearing the good news, I emotionally crumbled.

Oh, how I cried and cried. Sobbing tears of relief. Something I thought that I had been "ignoring," had been more like denial.

I took a couple of weeks to just grieve. I grieved the fact that once again in my life, I was told I might have a bad health prognosis. I grieved for all the healthy years that sickness has taken away from me.

I hibernated a little bit. I needed a place to heal.

I read. I rested a little extra. I saw my counselor and shared all this information with her.

And a single tear or two will still occasionally fall.

Living with sickness is difficult enough, yet we still have to deal with the emotional part of it - which (to me) is sometimes harder than the physical.

Matthew 11:28 says, "Come to me, all you who are weary and burdened, and I will give you rest."

I've been laying in my Father's arms, and resting a lot lately.

It's okay to grieve. It's okay to rest. There is not a right or a wrong way to live with an illness and all the baggage it brings along.

I will rest and heal some more. I hope that through this blog, you'll know that grieving and crying sometimes are part of the healing process. And it's okay. The Bible even says so. ;)

Wednesday, May 2, 2012

My Top Mayo Doctors

I've been a patient at the Mayo Clinic for 18 years, and have been seen by doctors in almost every department.

Through my experiences, I thought I'd share my favorite Mayo Clinic (Rochester, MN) doctors with you. As most spoonies know, it's hard to find a good doctor who can properly diagnose and treat our medical conditions.

Cardiology: Dr. Thomas Allison

Endocrinology: Dr. Paul Carpenter and Dr. John Morris

Gastroenterology: Dr. Lawrence Szarka and Dr. Michael Camilleri

Gynecology: Dr. Laughlin-Tommaso

Internal Medicine: Dr. Ann Vincent

Dr. Bruce Krueger

Autonomic Specialist, Neurology: Dr. Robert Fealey

Physical Therapy (for any type of pain): Lyndsey Vandenberg (not only is this girl a genius, but super compassionate!)

Rheumatology: Dr. Kevin Moder

I have seen other good doctors, but these receive a five-star rating from me.

I'll blog soon about making an appointment at the Mayo Clinic. What to expect, and all the do's/don'ts and tricks of the trade. ;)

Friday, April 27, 2012

My Hiding Place

"He will cover you with his feathers,
and under his wings you will find refuge; his faithfulness will be your shield and rampart."
Psalm 91:4

I love, love, love this Bible verse. It's my hiding place. God will cover me with His feathers; and I can rest, hide, get away from it all, and be comforted under His "wings."

Picture this verse and my interpretation in your head, if you will. How amazing does this make you feel?!

I hope that this verse will be of comfort for you as it is for me.


Wednesday, April 25, 2012

My Diagnoses (as of 4-25-12) ;)

- Gastroparesis

- Autonomic Neuropathy (which has caused me to lose (surgically) my gallbladder, appendix, uterus, and colon; and is currently affecting my bladder and adrenal glands)

- Nerve fiber damage

- Interstitial Cystitis

- Vulvodynia

- Fibromyalgia

- Rheumatoid Arthritis

- POTS Syndrome

- Adrenal insufficiency


- Migraines (the cause shows up on an MRI)

- Survivor of two DVTs & Pulmonary Embolism

- Only 60% blood flow in my legs

- Rare disease that affects your organs, yet to receive an official medical name (4th patient diagnosed with this at the Mayo Clinic)

...I feel like I'm forgetting something. If I did forget something, I'll come back and add it to the list. (You have to laugh at life when you have so many diagnoses that you start to forget them all! ;)

Monday, April 16, 2012

My Birthday Wish

I think back to when I was 15 years old. The tests that doctors now use to diagnose gastroparesis were considered "experimental" at the Mayo Clinic. I had to sign waivers to have these tests run back then.

I think back to just one year ago...I was in so much body pain. I was embarrassed to tell this to my doctors. They were already treating me for severe bladder pain, and now I was going to tell them that my entire body hurt just as badly? Would they think I was crazy? Even worse, would they think I was just a "pill popper?"

Luckily for me, they were very understanding, and told me I had a diagnosis called fibromyalgia. (What in the world was fibromyalgia? I had never heard of it.) To this very day, I'm still blown away that as many people who suffer from fibromyalgia, I had never once even heard of it.

Just last week I had another doctor's appointment. Guess what was taped to the window at the front desk? A new article about fibromyalgia. An article that explained its symptoms, and stated that most people are hesitant about telling their doctor if they have this wide spread body pain. That there is a name and treatment for this pain, and it's nothing to be ashamed of.

If only that article had been posted in my doctor's office window this time last year!

But, here's the good thing: There is always hope! If you have an illness right now; and it isn't being diagnosed, it's not well known, or there isn't treatment for it; {good!} chances are that in time, there will be a diagnosis. There will be knowledge to the general public about more and more illnesses. And there will be new treatments!

Today is my birthday, and one thing I've learned over the years in my life is that all things will come in their due season.

My wish today for you and for me: that we will never lose hope of the good things to come! Look back over your life (as I just did in this blog) - think about how certain things came to pass. The things we are longing to pass right now will come, too!

"God proves to be good to the man who passionately waits, to the woman who diligently seeks. It's a good thing to quietly hope, quietly hope for help from God." Lamentations 3:25, MSG

Saturday, April 14, 2012

My First Blog

Welcome! Thank you for stopping by! :)

My first I wait to write this until I have my cute 'lil Spoonieista graphic finished and up on my blog site? Do I wait until I have all my t's crossed and my i's dotted? My current background looks 70's hippish to me - what if I decide I want another background?

Why wait. @spoonieista wasn't my first Twitter username - it was @icspoonie (referring to interstitial cystitis, as its symptoms were the worst at the time I joined Twitter). I'm glad I didn't wait for the perfect Twitter name to meet my fabulous spoonie Twitter friends. I'd be pretty lonely right now!

I have to admit...I was a tad unsure about using Twitter at first. I was also unsure about limiting myself to spoonie friends. I wanted to meet people I could relate to, but what if hearing about their illnesses made me sad? What if it brought me down?

So I'd tweet, and step away. Tweet some more, and again step away.

Until the day I got my first direct message from @jenrobinegan. What? Somebody is paying attention to my tweets? She cares about what I have to say, and we have the same interests in areas other than just being fellow spoonies? Wow. That made me feel really special! (Thanks, Jen!) ;)

Next came @lpjph. I simply adore Lisa! We have a lot in common, and I feel like a cyber "auntie" to her precious Yorkie, Tori. (I, too, am a HUGE animal lover with 3 dogs and 2 cats of my own!)

Many precious friendships developed after I met Lisa.

Later on, @julianna12369 tweeted me, and I followed her back. Julie tweets it like it is, and I love that about her! Then she tweeted links to blogs that she wrote, and I was just like, "wow." I want to write, too! If she encouraged me by her writings, maybe I could encourage others by my writing, too!

So here I am!

Thank you, @bydls for creating the "Spoonie" Theory and giving those of us living with a chronic illness(es) a place to belong...a place to connect...a place to EXIST!

I will share about my illnesses in another blog. They are many, and I don't want viewers to see my first blog and run away due to it being too long! ;) Also, many of my fellow Twitter friends know I am a patient at the Mayo Clinic and have asked me to share information. That is coming soon, too!

So, what do you say? Let's get this blogging started!