Someone's Testing Me...

I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. -Mother Teresa

Received a phone call today from my doctor's office. They have found a spot in my lung. Now I'm headed off for a CT scan.

Lemonade anyone?

Girlfriends

I went with my husband a few nights back to see the "Sex In The City" movie. I realized while sitting in the theatre that we were surrounded by groups of varying sizes of women and their friends. I also realized that I really miss not having a group of my own.

I have never been one to have a pack of friends, but I've always had at least one friend who was always there through thick and thin. You know the kind, someone you call regardless of time. Someone who always has your back and is there through the good and the back.

I had a friend who was that person for over 25 years. I suppose I should rephrase that to say I thought she was that person. In hindsight, I should of cued in that she wasn't really hitting all the friendship high spots. But when you've put all your friendship eggs into one basket, you tend to overlook things that maybe you wouldn't have if you had other options. I had the proverbial rude awakening one day and along with it discovered I no longer had any close friends.

I stress the word "close", because I have friends. People I talk with, got to lunch with on occasion, even take a long weekend here and there. But I've lost my wing woman and no squadron in sight. I miss having someone you can share every thought with without recourse. Do crazy things with, share the good times and bad times, and laugh about it 5 years later when you cross the topic again. I'm fortunate in the fact that my husband is truly my best friend as well, but sometimes what I want to do is gripe about him...in a loving way, and I can't really do that with him.

I'm trying to find another wing woman. Hopefully I'll find a more than one. I know that I have challenges ahead of me and having someone to help me balance the load would make life easier. Hopefully I will be able to do the same for them.

So if you have a wing woman or a wing man, cherish them and let them know how much they mean to you.

Tired Of Making Lemonade

I'm sure you've heard that saying "When life gives you lemons, make lemonade". What does one do if you don't want to make lemonade anymore?

That was what I was thinking as I sat reading my latest set of lab tests. Here I am two years after surgery, thinking that I was over the worst of my health challenges. The Cushing disease seems to be in remission, I should start feeling great any day now right? Wrong, I wasn't. The majority of my days are filled with a generalized pain and constant exhaustion. At first, I though perhaps it was just recovering from Cushing's, they say it takes awhile, but two years? So I went in and told the doctor what was going on and they decided to test me for sleep apnea. Bingo!! That is o.k., I could handle being on CPAP if it got rid of this constant ache and exhaustion. After 4 months of CPAP no change. I wake up rested, that is good, but I still feel like I've been hit by a truck and my body has just finished running a marathon. So back to the doctor I go.

His first thought is that I have fibermyalgia, but before he can diagnose it as that he has to rule out other nasty things like Lupus, Rheumatoid Arthritis and MS. Doesn't think any of those are an issue, but needs to rule them out for insurance purposes before he can diagnose and treat fibermyalgia.

The idea of have fibermyalgia was not on the top of my list of ailments, not that any ailment is. But there are certainly worse things to have. Which brings me back to the lab tests.
Rheumatoid Arthritis. That can't be right can it? Maybe it is just a false positive. Let's run the titer, surely it will come back negative. Rheumatoid Arthritis titer is positive.

I've seen first hand what RA can do to a person's body. Granted it was years ago and a lot of progress in medication and treatment has occured since then. The fact remains however that this disease can cripple you. Slowly taking away your abilities to live a normal active life. It could take away my ability to work with glass, hold my future grandchildren, have a golden retirement with my husband.

So the dump truck of lemons has been dropped in my lap and I'm not sure I can make any more lemonade...

Wow, March 22 2006

March 22, 2006. That was the last date I posted to this blog. When I think about what has happened between that day and now, it is kind of mind boggling. Not quite sure where to begin, but I'll try.



On April 3, 2006 I had surgery to remove a rather large tumor from my pituitary gland that was causing Cushing's disease. At least that was the going theory. In hindsight, this surgery was a lot more scary then I realized at the time. But by that point in time I was so sick that my only focus was on staying alive for one more day. I lived those "one day at a time" days for probably close to six months. I don't really remember a whole lot of what happened between April 2006 and October 2006. Maybe that is just the higher power's way of making life easier. All I do know is that I made it and that I no longer take tomorrow for granted. In fact, I don't take a lot of anything for granted any more. I was close enough to crossing over to realize that each day is truly a gift and one should treat it that way.



In late 2006, my neighbors in an effort to get me out of the house and moving again, invited me to go with them to a glass fusing class.



A really simplistic way of explaining glass fusing is you take glass, put into a kiln, heat it up until it melts together and then cool it. There is quite a bit more to it, from both a scientific and technical perspective, but I'll save that for another time. People makes fused glass pieces that are used in everything from jewelery to large platters and bowls.



My first project was a large plate. When I say large, I mean large, probably about 22 inches across. It was called a fractured plate, because I cut two large circles of glass, one a bit smaller than the other. Then I covered one with a cloth and hit it with a hammer, causing it to fracture. I then layed those fractured pieces out onto the other class circle and filed the cracks with ground glass called "frit". Popped it into the kiln for an extended period of time and ended up with my first fused piece and the start of an addiction.



Working the glass made me forget about all the aches, pains, and challenges of recoverying from surgery and Cushing's disease. Recovery is not a quick process. It's been over two years now and I'm still working on it.



I will be the first to admit I'm a bit of an enthusiast. I'm not content with just starting slow and working my way up. I jump in and in a big way. So shortly after that first fusing class, I had filled my garage with a large kiln of my own, sheets of glass, jars of frit, and lots of molds.



Anyone who has a "glass addiction" will tell you that one technique leads to another. In April 2007 I decided to take a class in making glass beads using a torch and "soft" glass rods. That lead to a class in July 2007 to learn how to make glass beads out of a different glass called borosilicate. Which lead to a class in how to make glass ornaments out of glass tubing...which lead to a class in how to make marbles. Which....well you get the picture.



Now my garage is home to a rather large torch, a couple of oxygen concentrators, a propane tank, and lots of glass rods. Yes, the kiln and the sheet glass is still there as well.



I work primarily with borosilicate glass now, also known as "boro". For the moment I seem to be focused on making marbles and winestoppers, usually with a floral theme.

One day I hope to actually sell what I make online. I've reserved the website already, http://www.purplelemurglassworks.com/. Nothing there yet, but one day soon. I'm just working on getting up the courage to take the plunge.

I don't know that this blog will have any kind of theme associated with it, other than me taking one day at a time.

The Nurse Cat

It's funny how our pets seem to have a second sense when it comes to their owners.

I have a cat named Orion. We acquired her from the local humane society as a kitten. They had found her, starving to death, under the porch of an abandoned house. Orion has never been a warm and fuzzy cat with our family. It took years for her to learn to trust us, she is still jumpy and easily spooked. But she always seems to know when something is wrong with me and just how wrong it is.


When I'm ill whether it's a cold or as the case now with Cushings, Orion changes from an aloof cat to a snuggle bunny with optional massage therapy.

She jumps onto the bed, where I seem to spend a lot of time lately, and gets her body as close as physically possible to mine. She is happiest if she can achieve fur to skin contact. From there she engages "full purr" mode. If it is a particularly cruddy day, she seems to sense it and adds in a mini massage, accomplished by vigoriously kneading the front paws on my closest body part. She'll do this for as long as I am in bed.

If I am well or having a good day, Orion is no where to be found, hiding somewhere in the house, but as soon as good turns to bad, she appears out of nowhere to perform her duties as the Nurse Cat.

Daily Rating Scale

Since I've been told that I have Cushings and have been feeling pretty poorly because of it, I've found myself trying to quantify how cruddy a day it is compared to others.

It's difficult, because it seems like 90% of the days are cruddy...so how do you rate crudiness?

Let's see, I wake up, I can walk to the bathroom without a pep talk to get out of bed and I don't go directly back to bed afterwards. Rating-A good day.

I wake up and I'm still tired. Calculate how long I can lay in bed before bladder explodes. Spend 10 minutes promising myself if I get out of bed that I can go right back to bed after I'm done. My pep talk is successful and I get out of bed. Rating-A semi cruddy day.

Waking up resembles regaining consciouness from a night of drunken abandonment. Pep talk focuses on convincing myself to open both eyes at the same time. Crawl out of bed to use bathroom only because you remember that adults shouldn't wet the bed. Proceed directly back to bed where you stay until it's time to go to bed. Rating-A cruddy day.

Hopefully I don't have to come up for a rating when I don't get out of bed at all.

What They Really Mean

There are a number of symptons associated with Cushings. What I've discovered is what you read as being the symptons and how they actually present themselves leave a lot of room for interpretation.

So here are my descriptions related to symptons of Cushings from my perspective. Keep your tounge firmly in cheek.

Moon Face- Rounding of the face.

Translation: If my face only looked like a moon I'd be happy. I'm convinced someone installed a valve stem somewhere on my head and a little gremlin sneaks in at night and inflates it. I expect any day to find a tatoo that says "inflate to 65 psi" somewhere on my head. My opinion, they should call it a basketball face.

Facial redness

Translation: Imagine your favorite Irish drunk, remember how red his/her face was?

Hump on back of neck

Translation: Yup, it's a hump and you can't even store water in it like a camel can.

Weight gain around the belly with thinner arms and legs

Translation: Imagine the Michelin tire guy. Replace his arms and legs with toothpicks and you'll get the picture.

Facial hair growth

Translation: This needs to be changed to body hair schizophrenia. Why? The hair on your scalp will either quit growing, fall out, or both. The rest of the hair on your face will go into growth overdrive and they'll bring friends. Great if you're guy, not so great if you're a female, unless your auditioning for the bearded lady position at the circus. On all the other places that sport hair on your body, flip a coin, heads it grows...tails it doesn't.

Acne

Translation: Get ready to revisit your youth.

Muscle weakness

Translation: Remember when you used to workout and how your muscles would feel weak and shaky afterwards? Like that, except it doesn't go away.

Easy bruising

Translation: Pretty self explanatory, your experience my differ. If you look at me I bruise.

Fatigue

Translation: You can never imagine how tired you will actually feel.

So What Exactly Is Cushings?

I keep talking about Cushings but I haven't really explained what it is. I've chosen not to because I don't want to misrepresent or give the damn disease any more credit than it's due. A quick stop at your local search engine will take you to a number of sites for more information. However I realize that there are those who just want to cut to chase. If that is the case, you can start here: http://ohsupituitary.com/patients/cushing.asp

This is not an endorsement of OHSU on my part, I will freely admit this is where I'm being treated at and in my opinion their website is just as informative as the others out there.

Of All The Contests To Win

Depending on the source, the rate of occurence of Cushings in humans is 5 out of million. You probably wonder why I bothered to throw in the "in humans" clause. That's because when I first started looking up Cushings I kept coming across Cushings in horses, dogs, cats etc., seems it is fairly prolific in the four legged mammal category.

When I saw the incidence rate I couldn't help but think about the contests you see on television tied to breakfast cereal or some other high sugar content food. Many will enter, few will win!!

I've probably had Cushings for years. It's one of those diseases that has a multitude of symptons that unfortunately could be attributed to any number of diseases. In retrospect when I go back in time and look at different things that happened healthwise and bodywise with my Cushing glasses on, I have probably had the disease since 1995. Officially diagnosed with Cushings...February 2006. A good ten years of the lemur trouncing happily through my body, undetected, to do what damage he/she can get away with.

Well not completely undetected. I had visits with physicians over the years related to problems I was having with my weight and how it was distributed, lack of energy, etc. and I'd always get the party line. Exercise more, eat less. Never mind that I'd been on 1500 calories or less a day and my weight would stay the same if I was lucky, usually it went up. 1500 calories isn't low enough, cut it down to a 1000 calories a day and use some willpower and the weight will come off. I finally just gave up. It became obvious to me regardless of what I ate or what activity level I had, my weight was going to do what it wanted to do. I would of preferred it had chosen a size 10 body image, but it had other ideas, and I was tired of stressing about it.

Being tired was attributed to my thyroid. Hair falling out, too much life stress. Abnormal, heavy menstraul cycles, early menopause. The list goes on and on.

Part of the problem is physcians don't like to get out of their comfort zone so they take whatever symptons you have and match it to a sympton pattern of a disease or condition they know about. Similar to the saying "If you have a hammer everything looks like a nail" Coupled with the fact that only 5 out of a million people ever get the disease in the first place, gives a whole lot of opportunity to completely miss the diagnosis.

I have the diagnosis, I'm not sure I want it now that I have it.

How The Lemur Got It's Name

"When they finally figure out what is wrong with me, I'm going to rename whatever it is and call it a Long Haired Purple Spotted Lemur" I told the nurse as she rolled me down the hallway for a CT scan, the second of three tests scheduled for the day.
"That's a pretty good name" she chuckled "I hope they figure it out."
They did figure "it" out. "It" is called Pituitary Cushing's Disease and it leaves a lot to be desired in the fun department, which I'll detail later. To make matters worse if you do any research about the disease via the internet you'll be convinced your doomed based on the horror stories of diagnosis and treatment that always seem to find the way to top of your search results. I'm sure there are probably good stories out there as well, just not as easily found.
I've gone from being a productive 40 hour a week, insanely happy with my job individual to a stay at home, sleep 16 hours a day, give yourself a pep talk to move, owner of a Long Haired Purple Spotted Lemur; all in the matter of weeks.
In an effort to feel productive, perhaps find others charged with the care and feeding of a lemur, or those of you curious about the havok a lemur can do, I decided to give blogging a try.

We all have to start somewhere...