Ride for a Q'ure!

One of the biggest (pun intended) and worst parts of Cushing's Disease is the weight gain. What people don't understand however that as easily as you can gain weight with Cushings because of high cortisol levels.. that's just as hard as it is to LOSE weight!!! The media has poopoo'd the idea that weight gain can be because of hormones because for awhile so many folks tried to use that as an 'excuse' and likewise with genetics. "I'm fat?! Well it's not my fault, I have bad genes and my hormones are crazy!".. so the shift was taken away from these ideas so that the individual again had to become responsible for their choices, for their weight and for their overall health. However, there are instances where weight really is beyond your control: Cushings. For myself and nearly all of my fellow Cushies, the harder you try losing weight, the faster you gain. Now I'm not saying the because of this you get free reign to eat whatever you want and never leave the couch, on the contrary, doing so would just leave us all even sicker than we are!! Because of our disease we try our hardest to do whatever it takes to improve our health since the disease and tumors seem to be running the show!!

So anyway, now that my cortisol WAS coming down, my endo had told me that it was time to try exercising again. In the past I've tried when my cortisol was very high and all that happened was that I gained weight. As a result she told me to stop trying because I was doing more harm than good. Now that it was lower again, I got the go-ahead to try again. I tried walking the treadmill but without proper help to manage my pain, walking is just too damn hard so I got on the bike one day. (We have a recumbent stationary bike). And to my surprise, it was much easier to ride for a few minutes than to walk! Why didn't I think of it sooner?! But I knew my motivation would run out quickly, so I came up with the idea for "Beth's Ride for a Q'ure!" I want another tattoo very badly, but of course don't really have the money for it, so I thought that I would ask for help! So for every 50kms that I ride, I ask for a sponsor to give me $10! By the end of 2000kms, I should have $400 which would be about enough for a tattoo and the one I want to get is a portrait of Quincy, hence the "Q'ure" part... I'm riding towards better strength and health and also towards a tattoo of my Q! I will likely get it on my left arm somewhere. That's where he sleeps most of the time, tucked snuggly under my left arm.. so this way I will always have him with me even when he's not with me! As I write this I'm at 47 kms, so very close to meeting my first goal! This challenge has really helped keep me motivated because I know that I will not only be letting myself down if I fail, but now I am accountable to many other people too! So I think I can, I know I can, and I WILL!!


Here's a link to my challenge on Facebook:
http://www.facebook.com/events/277514258980880/


I still need sponsors, so please sign up to support me, or you can just say you're "Going" to show your support as well! Every little bit helps keep me peddlin' away!

Angie

Angie Bailey was my friend. Is my friend. Do you say 'is' or 'was' when someone passes, because she's still a part of my world. I met Angie on Facebook. We just talked casually at first but then she wrote to me in a personal message because she was at her wits end. She had many health problems and at one point was prescribed large doses of steroids that gave her medically induced Cushings and that's how she came to be a part of my world - through the Cushings community. She poured her heart out to me in frustration and that was the beginning of an amazing friendship. She was an amazing person. I don't say that only now because she's gone, but because she really truly was!! I doubt that I will EVER meet anybody like her again in my lifetime.

Angie battled many diseases. She had issues with her reproductive system, so they removed most of it, other problems, so they took out some more, and most recently was thyroid cancer, so they also took out her thyroid. With every new thing, when she could have completely broken down and lost it, she managed to hold it together and use it to fuel her in life. She took the crappy things related to her health and turned them into loving her friends and family more and 'doing' for other people. She was so damn generous, that I imagine if she could have, she would have stripped down naked to make sure you were warm. She gave money all the time when she could, she gave things to people who needed them, but even just when she gave you her attention, she made sure you felt special. She was so smart, and so wise. You could have a dumb conversation with her one minute about the stupid shit people do, and the next minute you could be having a philosophical conversation with her about the theories of human behavior. She was a one-stop-shop for all of the things you look for in a person. You could laugh, you could cry, you could be yourself, Angie allowed that and welcomed it. Actually, the more off your rocker you were, the more she liked you. Plain was boring!

Angie and I have both had a really hard go at life but we made promises to each other. We promised that we would never give up and that we would keep fighting and that one day we'd open up a practice together! We were both working to become psychologists and work in the medical community. So we just promised to keep fighting. She also made a smaller promise to me that even if things were shitty.. that she would at the very least "peep" at me.. just so I would know she was okay and she did keep this promise once.. she sent me a message that said "peep".. she didn't have to explain more, but I knew she was okay.

Last year a lot of crap happened and in the end, Angie made the decision to move to New York from Ohio. Long story short, I ended up losing touch with her and the next thing I heard was that she passeed. I feel sort of to blame for not being there for her.. for not being just a 'peep' away when she needed somebody. So many questions, so many what-if's, could I have done something to change the outcome? I really don't know and will never know. Truthfully, I still don't even know or understand what happened. I just know she's gone. 

All I know with 100% certainty is that this world lost a real, true Angel. I know that when someone dies, people will glorify a person so as not to talk about them bad when they're gone, but this isn't what I'm doing.. Angie really just was an amazing person. And the world has a huge hole to fill with her gone now.

I miss you Angie.. I'm sorry I never got to meet you in person, and I'm sorry that I wasn't there for you more. I wish you could have kept your promises to me and that we could have made some of our dreams come true. Your family and friends miss you so damn much, as do your animals and all of the people and animals who never got the chance to meet you - they're all missing out.

Your pain and suffering is gone now - that's the ONLY good thing to come of this. Rest in peace, Angie. I love you. <3

A challenge was put out to get people blogging and raising awareness for Cushings, so I thought it was a really good time to actually get busy here and post an update.

Since I last wrote, quite a bit has happened. Well, relatively speaking that is! My numbers WERE starting to look good after I increased the caber to 3.0mg 3 times a week and I was even able to pee a normal pee! So very exciting, but like with everything else in my life, it was also short lived. My numbers started to go up again back in January and they've slowly been on the rise since. At my last appt my endo told me that if my numbers went up we would look seriously into getting the new drug, SOM230, aka Pasireotide. Well, I wasn't feeling good in February and actually thought I was low, so I went in to test and instead of being low, I was running really high again. I panicked and my endo just told me to be patient, so I gave it a bit of time then tested again in March and I just keep going higher. I even did two 24hr urines (my most hated tested) a week apart and my cortisol jumped 100 pts from one week to the next. :( I got a copy of my blood labs and it showed my cortisol up, ACTH up, thyroid low and blood sugar up.. so I called in because I was not going to wait another month and a half for my scheduled appt and I got in to see her last week. She agreed that things were not on the right track anymore. :(

The Plan now is to get SOM230. We thought we could get it fairly easily, but somebody gave us the wrong info so I'll have to apply through "Compassionate Use" which from my understanding simply means that you must apply to the government for special permission to use a drug that's not available here yet. The fact that it's been approved overseas will really help my chances, and I can also prove that I've had two surgeries, tried almost a year of Mitotane, tried ketoconazole many times and now I'm coming up almost 2 year on Cabergoline and none of them have been long-lasting cures. So anyway, my endo nurse started the paper work already for me and they just needed to also know my A1C (the biggest side effect of the med is raising BS) and they also needed a current EKG which I rushed to get done - and the QT Prolongation is what they were looking for specifically and apparently mine was normal! I'm hoping very much that this means I will have an easy time getting this drug because I need it badly.

In the meantime waiting for SOM to come through - I've started metformin. My sugar has been creeping up slowly and it's becoming something we can't really ignore anymore. You have to admit that I've been very lucky in this regard. One of the Hallmark symptoms of Cushings is high blood sugar and for almost 8 years I've avoided it. My hatred for sweet foods and many carbs has probably helped me a lot! Now though my endo said if she just looked at my A1C she would say I'm diabetic, although from the bit of daily testing that I've done, it hasn't looked too bad. But because of trying to get SOM230, I really can't afford to have messed up BS going into it considering what it seems to do on it's own!! I've started with just 1/2 of a metformin pill once a day and will slowly work my way up on it. As soon as SOM comes though, I will stop so that we can see what the new drug does to my BS on it's own. I am also going to push the caber past the max dose. Up until now I've been taking 3.0mg 3 times a week, and this past friday, I took my first dose of 3.5mg and will keep it at 3.5 X 3/week for a little while and move it up again after that. She said to aim for 12mg/week and stop there but I'm hoping SOM comes before that! Once I see how the metformin goes, I'll also consider adding back keto again. As much as I hate it, the "start-up" effect of quickly bringing cortisol down can't be denied, so to just shock my cortisol and scare it down will be good for me. :/

And now I wait.. just anxiously wait. I need this new drug to come fast and more than that, I need it to WORK! I know surgery is always an option down the road for me.. but I'm really not ready for that. I just need these meds to WORK!!!