And It's About Time There Was Some Support For Cushing's!
Here is some simple stats about me: I’m 41, never had children, diagnosed with fibro about 7 years ago, big huge fat belly and skinny arms and legs, big round face, hump on the back… yada, yada, yada.
Here is my sad tail (no, I don’t really have a tail):
Now that I look back, I can see that I must have had this tumor for quite a few years. In February of 2007 I suddenly started lactating for no reason and that was the first clue that started me on this journey.
I immediately went to my GYN. She said I must have a pituitary tumor and she wanted to start me on Bromo. I said with all restraint, "OK now, wait just a minute… You’re telling me I might have a brain tumor but your not sure and you just want to put me on some kind of medication to see what it does?" She was so very nonchalant about it and I think that really threw me.
I drove my chubby little self over to one of “Seattle’s Best” Neurologists and got an MRI. Showed a 2mm tumor... I think it's 2mm? It's very small.
I'm freaking out. My friends in the woman’s group at church all think I'm going to die because I have a brain tumor. I have had lots of prayer!
I knew I needed more information and I’m one that doesn’t stop till I get an answer. I have not trusted doctors for many years because of bad experiences. I relied on the Internet, using serious caution of course. That is where I found pituitary.org and the Yahoo board.
Then in March my period stopped. And now, being tired was something I had dealt with for some years being diagnosed with Fibro. I have most of the trigger points. But now I was just so exhausted, and well… you all know what I’m talking about.
Then I started having severe painful fatigue in the muscles it takes to walk up hill and stairs. Especially my tensor fascia latte – that is the large muscle that runs along the outside of the thigh and connects to the hip. I was not able to figure this out and neither were the doctors. I could take 2 or 3 normal steps up even a slight incline and then boom! I nearly fall to the ground with my muscles in pain. That has been the worst thing by far because my boyfriend and I love to get out in nature to hike and I couldn’t even hardly walk!! It’s especially great to hike here in WA.
Boo-hoo-hooing all the way to the library where I promptly got on the computer to find some answers. I read about Dr. Ludlam on pituitary.org and sent an urgent email begging him to help me because my Endo said that the muscle weakness has nothing to do with the pituitary.
He said that it in fact has much to do with the pituitary. I felt so validated! I didn’t realize at the time just who I was talking to… I mean, how he is such a valuable and famous doctor for people with Cushing’s! All I knew was I was in a crisis.
I did the cortisol testing and now this was in April. I didn’t keep track on the paper he gave me and so when I got to my appointment (where I met Tara) they could not help me. OK, so I’m a bit self-destructive. Dr. Ludlam’s nurse said not only did I not bring in my little chart thing, but none of my symptoms matched the blood work results. Well, for crying in a bucket! I’m just going to be confused, lactating and weak now and no one will ever believe me and there is nothing that can be done about it! Just great.
So what did I do? I gathered up strength and encouragement from my Lord Jesus Christ and I started back on the road to hope for healing!
I decided to go to an expensive alternative medicine school / clinic called Bastyer. Around here, when you tell people you’re going to Bastyer, you get lots of oooohs and aaaahhhs! I could never afford such a place because I’m poor as dirt. I mean money wise because I have good friends and the Lord so in that respect I am rich. I knew God led me there, so with perseverance, I found out they see people for free if I’m able willing to drive out to the Issaquah location!
Dr. Michelle Campbell is very knowledgeable and I thought she was cool. As I expected, she couldn’t directly help me with the pituitary thing but my hope was she could help out with the symptoms I was having. And of all things, what they focused on helping me with was IBS. I am constipated all the time from being on Effexor. After much “work”, I finally got things cleared out. She said I would be able to think clearer and she was right.
Now, you might be asking yourself, “What in the world does clearing out the colon have to do with pituitary issues?” It’s the whole body thing. I mean, I really think so many illnesses and syndromes start in the gut. I’m one who believes in “leaky-gut syndrome”. My body wasn’t getting all the nutrients from my food and also the vitamins I down every morning with my high protein soymilk shake. And that alone causes big problems.
For example, since the pituitary tumor, my electrolytes have been really low. If I get nauseous, I take a few drops of electrolytes with potassium and I feel better right away. And the electrolytes are stored in the large intestine!
OK, so now I am doing the testing over again with Dr. Ludlam. Over the past few months I have seen several docs and have paid a lot of co-pays. So much frustration and suffering.
Then I found a great Endocrinologist at PacMed. He put me on Bromo and I’m starting to feel better. I am lactating still, but I did start my period and now my muscles are getting better. Yah! There is not so much pain with walking uphill and I have a little bit more energy all together. Can you believe it?! Praise the Lord!
But you know what? Ok, get this… remember the GYN doc I saw at the very beginning? Well, she wanted to put me on Bromo. If I hadn’t freaked out and not trusted her, I might have saved myself all this hassle. But then maybe I would not have gone to Bastyer and gotten valuable information.
Oh well. I’d hit my head against the wall in frustration over my stubbornness except I don’t want to cause more damage to my pituitary gland.