Wednesday, September 9, 2009

Ups and Downs

I didn't think this was how recovery was going to be at all. What is so frustrating is that this weekend, I felt better than I had in months. Over the past few days, it's all gone down hill, unfortunately.

I've been doing research on thyroid issues and I'm pretty sure that I know what's going on with me. The good news is that I have an appointment out in Boston at Mass General with one of their endocrinologists since all the ones in central Indiana are completely out of their league with a patient like me. She's worked with Dr. Thornton to help other meningioma patients in the past, and I am hopeful that we can start to untangle a lot of stuff. I am convinced that either my thyroid/pituitary/and subsequent hormone imbalance are all related to the atypical meningioma, the Crohn's and the ankylosing spondilitis. Crazy, but I will explain more in a later post. Yes, I know that I am a difficult patient, but in preparing for this appointment (late sept) I've already uncovered a number of things that SHOULD have raised flags a long time ago.

I'm also just generally uncomfortable sleeping. My screws are sore, which makes me lay on my left side more. That has gotten sore, too. And 3 out of 4 markers from the radiation are still quite sore, even more so after radiation is done.

My new acupuncturist is really worried about the amount of energy that I have. And Jude is worried that I haven't put on any weight. It's not that I don't want to eat, it's that I get hungry and then can't eat a bunch. Or I make something, and it's taken so much energy, that I'm then not hungry enough to eat a lot.

I also think I had an anxiety/panic attack after a lunch with an old family friend today. Unfortunately, the place we went to was far too loud (for both of us), so there was waaay too much stimuli. Combined with the headache that I already had, I crumbled on the way home, and then took a 2 hour nap. The one thing she kept repeating to me is to take it one day at a time. But as I sit here typing through tears, it's hard to think that way.

Okay, there is a silver lining to all my doom and gloom today. I'm getting a second opinion tomorrow from another neurologist to see if we can't do something with these issues I've mentioned throughout the post (plus another long list of symptoms).

But the best news is that after the neuro appoint, I'm heading down to South Carolina tomorrow to spend 5 quiet, relaxing days with my mom. I'm even going to meet another meningioma patient - who just happens to live down the street from her. I think all this will help me out. I just want to dip my feet in the sand and the surf, and I think that will help my soul.


  1. You're right that when we start getting multiple things going on, we're too complex for most docs -- I know. Hope you find one willing to put the pieces together instead of just looking at their piece. Good luck with the endocrinologist and new neurologist. And, enjoy the sand and surf.

  2. I was only recently diagnosed with my M. I've not even had my first appointment with my neurosurgeon. Sites like yours are so helpful-- a preview of what to expect in general terms. Thank you. Enjoy your time away.

    Oh, and on a totally random note, I love your MRI widget. I post all my scans-- other illnesses besides M. Very cool. I want it, lol.

  3. I hope you are feeling better... know my prayers of healing and inner peace go with you, be with you, are with you always.

    It is alright to have MENINGIOMA YOYO moments (smile) I understand... the ups and downs... I call them the ME YOYO moments (chuckle).

    If it helps some (?) I have regular ME YOYO moments... they just happen... you know... something might trigger ME and then that YOYO starts... (smile)

    Anyway... a huge hug... take care.

  4. I know exactly how you feel. Before I had my surgery my neurosurgeon told me that they would take out the benign tumor, I would recover for 3 months then I would resume driving and work again, my life would be back to normal...NOT! It has been hell and I have pretty much experienced everything you have as far as emotions and hardships go. Going on 4 months now and I still cant drive, still having issues with seizures, still haven't gone back to work, have made several trips to the ER, had a 2nd brain surgery and will have a 3rd in December. Not at all like the neurosurgeons initial prediction. Hang in there, I am.

  5. Thanks to everyone for your comments. This month has been quite a challenge, but I'm hanging in there.