Cammi’s Adventures Down the Rabbit Hole

"If life is a bowl of Cherries,

Why am I in the pits?"

Erma Bombeck, 1978

This is my sister Cammi Marie, AKA Cammi Dew. She is the youngest of us three girls and was the most spoiled of any of us. She is now 40 years old and the single mother of a teenager and a 10 year old. Cammi and I have always been very close, we still are and I just cannot wrap my head around losing her. She has always been my best friend, my confidant, the one who makes me laugh and understands me like no one else.

"Don’t stop thinking about tomorrow,

Don't stop It will soon be here

Better than before,

Yesterdays gone, yesterdays gone."

Christine McVie, 1977

It all started in 2014 when Cammi’s own body first began to betray her, and once it got started, well, it hasn’t stopped yet. But back in 2014, Cammi started developing kidney stones… not the usual kind that will pass on its own, but very large kidney stones that require stents and catheters that are placed through her backside, directly in to the kidney hoping to drain the stone(s) out. This kidney stone thing gets her admitted to the hospital at least every 3 months or so for yet another procedure to expel the large occluding stones. This has been going on for several years now and it is still a thing today. Cammi has been diagnosed with what is called Medullary Sponge Kidney, which is present at birth but does not manifest until adulthood and results in an overproduction of something that causes stones to form…. Dozens and dozens of stones to form. If you can picture a gumball machine full of those round gumballs, well that’s what Cammi’s kidneys look like only full of stones and not as colorful.

"Every hour of fear I spend,

My body tries to cry

Living through each empty night

A deadly calm inside."

Stevie Nicks, 1979

Towards the end of 2019 Cammi began having difficulty breathing, getting short of breath with mild exertion. She thought she may have some pneumonia and didn’t think too much about it until she had no choice but to pay attention to it. This shortness of breath got progressively worse over the next couple of weeks and on January 8, 2020 it became a life threatening emergency, she literally could not catch her breath so I drove her to the ER as fast as I could, all the while praying that my sister would not die on the way. I remember noticing her blue lips and her hands which were white as a ghost. they actually looked like a dead persons hands. We have come to learn that the white bloodless looking hands are a symptom of another disorder called Renaud's syndrome. Once we got to the ER, it didn’t take long for them to diagnose her, she did not have pneumonia, she has Pulmonary Arterial Hypertension (PAH), not to be confused with high blood pressure hypertension, but the pressure in her pulmonary artery is so great that her heart has to work 10 times harder just to keep her blood oxygenated and circulating. She was admitted to the hospital to stabilize her breathing and run test after test after test. The cardiologist was not real concerned about how or WHY she got this, his only concern was treating the immediate problem. There is no cure for Pulmonary Arterial Hypertension, it is a progressive disease that is ultimately fatal, However, with advanced drug therapy, there is a 50% chance of a 10 year survival. .

” if you live to be 100,

I want to live to be 100 minus one day

so that I never have to live a single day without you”

Winnie the Pooh

It wasn’t until a year later that Cammi changed cardiologists. This new Doctor actually was concerned with the HOW and WHY she has this condition. After what seems like a hundred lab tests it was determined that she has Lupus then no, the diagnosis changed to Scleraderma, then Rheumatoid arthritis, then Sojourns until it was evident that she had all of the above and it is called “Mixed Connective Tissue Disease” which explains the Pulmonary Hypertension. Mixed Connective Tissue Disease is an autoimmune disorder where your immune system works overtime and literally attacks and destroys healthy cells and organs in the body, particularly the lungs.. It is not known what causes someone to get this, but it is a very rare condition that is progressive and destructive but again, with advanced drug therapy, it is possible to manage it for several years. My poor sister takes so many pills every day that make her feel sick and nauseous. I would just love for her to have 1 day, just 1 day of not feeling sick.

"Oh mirror in the sky

What is love?

Can the child within my heart rise above?

Can I sail through the changin’ ocean tides?

Can I handle the seasons of my Life?"

Stevie Nicks 1975

Cammi now has an army of doctors… a cardiologist, nephrologist, pulmonologist, endocrinologist and now a gastroenterologist. For the past year Cammi has been telling every one of these doctors that she is having multiple daily bloody mucousy bowel movements. They all pretty much blew her off and told her to drink some Metamucil. She did however get a referral for a gastroenterologist and was able to schedule an appointment, but they kept jacking her around canceling and rescheduling until she finally got in for a colonoscopy which was just a month ago in December. Turns out she has a malignant tumor the size of an orange in her colon. So now on top of everything she has to endure, she is now starting chemo and radiation. I mean these last 3 years have just sucked the life out of my sister! And on top of that she has zero income. She applied for disability benefits 2 YEARS ago!!! The first time she applied, she was denied, which I understand is the game this organization plays. So this last August she submitted an appeal with tons more documentation of her many illnesses. And according to the SSI website, they are only 40% through with their investigation.

As if things couldn’t get any worse for Cammi, a couple of days after she was diagnosed with colon cancer she had to undergo surgery for a temporary colostomy because the tumor was so big and in the way that she could no longer have bowel movements. She was in the hospital for about 10 days, not being able to keep down food or fluids, but finally got discharged on Dec. 15. She and the kids have recently been evicted because she has been unable to work and has no money.

This is why I am asking for help. My sister needs money to get a place and pay rent, utilities, and all the other necessities of life. My mom has been helping her as much as she can, but this cannot go on forever. We are confident that her disability will get approved…. Eventually, but they are in no hurry to approve it, and in the meantime my sister and her children are destitute with only 4 weeks to find a new place to live and no money to her name. Please help my sister with whatever you can, anything will be greatly appreciated. Nobody should have to go through all of this. I just love my sister so much and want for her to be able to concentrate on just getting through this without financial worries. Please, please help my sister!

“ and I saw my reflection in the snow covered Hills till the landslide brought me down.”

Stevie Nicks 1975

I love you, Sissy!