Legend of the Dreambox

I don't know about you, but even though I don't put too much stock into legends or wishes coming true, when I need something to believe in, I can't resist these things. 

Aaron and I are visiting an awesome little northern Arizona town bordering an Indian reservation this weekend. We had a great day exploring antique shops and an open air art festival. It really was a lovely day. 

We visited a particularly odd little Native American place called Harvest Moon Antiques. It had all kinds of odd things for sale from sun bleached bones to coyote pelts and sage burning kits. We looked around for a bit, and I told Aaron I wanted to find something that would be good juju. About a minute after I said that, I spotted the Dreamboxes. They had all kinds of animals hand carved on them from wolves howling at the moon, to snakes and bears. Above them was this sign. 

It was exactly the kind of juju I was looking for. This particular box caught my eye. On it is a beautifully carved Ram and a tiny aquamarine bead. My astrological sign is a Ram (Aries) and my birthstone is aquamarine. Believing in signs is kind of like believing in legends, but it was too cool to pass up. 

So, my sweet husband bought it for me, and when we got back to the hotel, I wrote down my fondest dream, greatest desire and strongest wish on a small piece of paper, and I placed it inside the Dreambox. 

Who knows! Maybe this legend of the Lakota Sioux Indians will make my wish come true :)

Because sometimes, you just have to believe. 

Learning New Words

Let me tell ya, in the last 4 years I've learned so many new words I've lost count. Medical jargon I never had an inkling I'd have to learn, nevermind understand. It's amazing how most of us walk around never knowing what everything in our body is called. Did you know you have a hypothalamus? Neither did I. But I had to learn what it meant and why it was involved in my diagnosis. As an endocrine patient, I've learned so much about my hormones, glands, metabolism, and how they all connect together to make a human body work. It's fascinating, really. There is so much to learn and understand about our complex selves, I now sympathize with scientists ;)

Returning to my ever evolving vocabulary. Today's new word? Idiopathy.  

id·i·op·a·thy

ˌidēˈäpəTHē/

noun

MEDICINE

1. 1.

   a disease or condition that arises spontaneously or for which the cause is unknown.

   
   

   
   

Rigorously verified  Idiopathic AGHD likely comprises less than 10% of adult GHD patients, an already rare disorder.

Yep... That's my diagnosis. Idiopathic adult onset human growth hormone deficiency. Meaning they finally discovered what's wrong with me, but there is no logical reason they can understand. It's rare, then add more rare on top of that. Yayyy me. 😒 Thankfully, it can be treated just as if there was an obvious cause (like the tumor I was convinced I had) and after I start the hormone replacement therapy, I should start feeling better. It will likely take at least 6 months, but there is hope on the horizon. 

It took me a few days to fully wrap my head around what it meant, but I think I'm finally at peace with this explanation. At first, I was frustrated that I didn't have a definitive answer like I wanted. I wanted proof and solid evidence as to what was causing this. The "we don't know what's causing it" I got from my doctor wasn't good enough. I felt I deserved more. I stayed frustrated for a few days until I could accept there was no other answer they could give. This was it. 

I am truly appreciative that I don't have to face brain surgery. I was all brave armor, but scared as shit at the prospect. Not only that, this means I can start the recovery process this much sooner with the injections, rather than having to wait until after surgery. Also, sparing all the expense is a huge relief. 

Overall, I can say I'm okay now. I just want to start the treatment so I can begin feeling better and living like a normal 30 year old woman should. 

MRI Results

Dr just called! No tumor. She said there was nothing obvious on the MRI. So I asked why I was deficient if there was nothing compressing the gland and she said if there's no tumor, 99% of the time they have no idea what's wrong and it just is what it is (aka I assume I have to take the injections all my life since there's nothing to fix) So next I'm being contacted by the drug company who will come out and teach me how to administer the injections etc. She said it will take about 6 months for me to feel better, at which time they'll review the dose etc. So. That's that. I don't know whether to be relieved or frustrated. I'm relieved I don't need surgery, for sure, but frustrated that yet again, they have no idea why my body is doing what it's doing. Oh well. As long as it can be fixed and I feel better. That's all I want. 

MRI

The date of my MRI got moved a day UP! Ususally things move backward, not forward! I was very pleasantly surprised :) So this coming Tuesday, April 1st, I will be getting an MRI of my brain done to hopefully locate the tumor that is very likely crushing my pituitary gland. 

I've made peace with the fact that chances are very probable that I DO have a tumor. I'm okay with it. I just want to get it the eff out, start feeling better to get on with my new healthy life. Just trucking along on this journey. I'm just glad things are actually moving forward at this point. 

Yesterday I went to Sedona with my family, and we went to the healing energy vortex and the chapel of the holy cross to pray for my health, and future children. It was a very beautiful and calming experience, and I will carry that in with me to my appointment. 

This is it.

I was prepared to wait the 2-3 weeks they told me it would take for news, but this morning, the morning of my 30th birthday, I finally got an answer. This is it. After almost 5 years or feeling terrible and struggling through life, I finally have a diagnosis. 

Adult onset human growth hormone deficiency. 

It's rare in adults, and hard to diagnose. But it's the answer to everything that's wrong with me. 

The extremely likely cause for this is a tumor growing on my pituitary gland at the base of my brain. The next step in the process is getting an MRI to find out the size and location of this tumor. Then, removing it. Then, growth hormone replacement therapy. Though I have a diagnosis, I'm not out of the woods yet. It's going to be a long process and recovery, but now that we finally know what it is, we can work on fixing it. 

As scary as brain tumor sounds, getting the news this morning was the best birthday present I could have asked for. This is it. I'm not crazy. I've been suffering for years and now I finally know why. As of right now, as I'm sure this will change, I'm not scared. Just ready to move forward to move toward my happy future. 

I've been given the gift of starting my 30s with the answers I've been seeking and the ability to heal. This means so much to me. The prospect of being 30 isn't so scary anymore. It's beautiful, and encouraging. This decade, all my dreams will come true. I'm certain of it. :) 

Finally!!

The day is here! Tomorrow is finally time to have my growth hormone stimulation test done. It's been a very very frustrating few months leading up to it! First, I had to wait nearly three months for my appointment with the specialist who had to order the test. Then it took about three weeks for the hospital to call me to schedule it. My original test date was January 27th. The night of the 26th, they called to let me know the test wasn't covered by our insurance because since it was January, our deductibles had just restarted. Ugh! They quoted me $1200 for the test and basically demanded half down to keep my appointment. We just didn't have it, so they canceled my appointment. Very frustrating. 

Once we had the money raised, I called back to reschedule my appointment. It was then they decided to shock me with the 2014 price. Apparently I'd been misquoted the 2013 prices and now the cost was $1700!! They wanted almost $750 down now! I nearly fell off my chair! 

I told them it was their fault I was misquoted and $400 is what I had. Thankfully they found that acceptable and scheduled me for their nearest time. 

Which brings us to tomorrow! March 17. St. Patricks day! I sure hope the luck of the Irish will rub off on me! To help along, I have rainbow nails and rainbow socks hehe. I have to check in at 7:30 am, and the test will start at 8. I will basically be tethered to an IV line all day. They will give me something to stimulate my pituitary gland to make growth hormone and take my blood every 30 minutes to measure if it works. I'm a little nervous, but not exceedingly so. I'll be ok. I'm nervous about the results, not the test itself. 

I know it may sound weird, but God, I really hope this is it. I've been sick for so long. I just want to know what it is so we can start moving forward with treating this thing so I can start being healthy! Fingers crossed the results won't take forever! 

Test scheduled!

My growth hormone stimulation test was finally scheduled for next Monday, the 27th! I'm relieved and can't wait to get it behind me. 

Results

Well, after spending most of the day pissed off about not getting results because they were closed on the day they told me to call, I missed a call from them at 5:30 pm. Go figure. They left a voicemail saying my test results were ready to view on my patient files on their website if I wanted. I think it's pretty cool that it's an option. 

I went and checked right away, and the test for Cushing's disease came back negative. That means the pill I took to suppress my cortisol levels definitely worked and they were not elevated at all when they took my blood the next day. 

I'm definitely thankful not to have been diagnosed with Cushing's, but part of me is extremely frustrated that yet again, this wasn't the answer. I'm still waiting to hear from the hospital to schedule the growth hormone test. This is what Dr. C sent me in for in the first place, Cushing's was just a secondary test run by the new Dr to make sure she wasn't missing anything. I'm hoping his hunch was right and I'll have answers soon. Just more hurry up and wait. 

Waiting for News

Tomorrow will be one week since my long awaited appointment with the specialist. Things went well, she just went over my history and symptoms and she ordered two tests. 

One test is to check for what Dr. C sent me to her for in the first place, the growth hormone stimulation test. I'm waiting for the hospital to call me to schedule the procedure. I'm hoping they will call this week. 

She also wanted to test for Cushing's disease. When I first started researching the battery of tests Dr. C ran, I came across Cushing's as a possible thing he was looking for, so I am familiar with it. It's a condition where your body produces too much of the hormone cortisol and it disrupts everything in a bad way. 

That test I was able to do at my pace, which I liked. I took care of it right away. I was prescribed a cortisol suppressor pill which I took Thursday evening after the appointment, then went in for a blood draw first thing Friday. That should let them know if Cushing's is a real possibility or not. I'm supposed to call them by Friday morning if I haven't heard anything yet. I'm going pretty crazy....

So fingers crossed I will hear tomorrow, and then we will go on from there.