One Step Forward, One Step Sideways

To quote a friend - my doctors appointment was Good News. One step forward, and one step sideways.  I think that is a very accurate account.

Now I am attempting to write this for the third time. Yesterday quite literally exhausted me. I fell asleep immediately when I got in bed last night and slept in. Started to write this afternoon and slept 4 hours. My body still feels so tired.

Tonight I am just miserable. I seem to be fighting a cold that my daughter brought home from work. I ended up suddenly feeling very odd (symptoms I have come to learn least occur without reason, its not the first time). Gastrointestinal unrest, irritable bladder, dry mouth, dry eyes,  tension in shoulders followed by this tingling feeling in my arm or arms, chest pain, heart racing and then yes the jerking of limbs and a myoclonic episode, seizure, or whatever the fuck it is.... To be followed by ativan. And 20 to  30 minutes some symptoms subside...

Yes, all the doctors are aware of my symptoms along with enough to fill 3 more blogs. So, where are we - the endocrinologist was good.  The adenoma (always benign) is 3 mm in size, or about 1/8 inch... Its not putting pressure on anything. He pointed out a number of concerns. He took a few good size vials of blood and Sunday to Monday I will be doing a 24 hour free cortisol urine test.  We really won't know much until late next week as to what is going on. The side step - he doesn' t believe seizues are related :(

I was scheduled to see a movement specialist at another large university hospital today. I was so frustrated not knowing if I should go - lucky a short phone call with his staff, provided that he would need this endocrine information first. Problem solved -

I am falling asleep again. More tomorrow. Love to all

The Big Day

Today is the big day. I see the endocrinologist and will begin to understand what having a pituitary adenoma truly means to me and the rest of my life. Yesterday, a friend and I met for lunch. Her mother, now 73 has lived with this condition for 30 years now. She shared many of her observations, her mothers experiences and challenges. In the end, her message was clearly that I will be fine. As with anything I have a lot to learn, my individual situation will likely be different in some minor ways, however over all, I will be able to live my life. What more can I ask for!

All that said, I honestly am terrified. I slept for about 90 minutes early, only to wake up about 10:30 pm wide awake, jerky, head, neck, back and pelvic pain as well as nausea - followed by a seizure at 1:45 am. The wind  blowing loudly, the dogs snoring, Payton tried getting in the trash, even caught Cleedus trying to get to something (no food in sight) off the counter. I was 100% on edge. I finally found a comfortable position on the recliner with my favorite down comforter and my special Snuggie and slept for a couple hours. Fair to say I am totally stressed out.

Today feels life altering. What is this adenoma? Are we 100% sure that it is benign? How big is it? Does it require surgery? What are the risks of the surgery? Recovery? What about radiation? How do they determine what hormones are screwed up and how long until we can get things to start leveling out? What about seizures? Is this causing them for sure? If so, is it reversible? Is there any chance this has effected any organs i.e. heart, kidneys, liver, pancreas? I feel like I could write questions for hours. Not to mention I have a list of all my symptoms I have been compiling for 3 years now.

I have done deep breathing, I have prayed, I have gotten words of encouragement from loved ones and hugs from my daughter before I left town. I have snapped at my husbands good intentions for no reason. I have felt the sting of tears that aren't ready to fall. Now we spend a few hours in the car, head down to to the city (about 3 hours from home) to see the new specialist.

I will have a lot more answers tonight. Hopefully with the answers will become a level of peace. I will let you all know what I learn when I find the words.