What am I grateful for?

October 7th.  It is hard to believe it has been one year since the tumor was removed from my head that a few times hemorrhaged and almost killed me.  After six years of my health on a slow downhill slide, it sure feels good to be working my way back up the hill.  I am not there yet, but the top is visible with no fog surrounding it.

There is so much I still cannot remember over the last couple years and it may never come back to me.  A year ago I could not see how I was ever going to feel better.  Hell, six months ago was still a daily struggle.  People have asked me if I am back to “normal” yet.  I don’t know how to answer them.  It was for so long that I didn’t feel “normal” that I really don’t know what that means anymore. When is good enough…good enough? I can say am doing very well now and feel better than I have in years. I talk to so many others that are still fighting this illness so I am thankful every day.

They say everything happens for a reason.  I don’t know what that reason is for me yet. Maybe one day I will find it, maybe not.  I will take things as they come.  This illness that took so long to diagnose changed my entire life in the blink of an eye it seems like.  There were times earlier this year where I could not find my dreams, my goals, or myself, and I didn’t even know who I was anymore.  I was truly lost.  It is so hard to explain how dysfunctional a mind and body can be without having your natural hormones anymore.  In my case I now take four different manufactured hormones and finding the correct balance was a challenge.  There are also some hormones that are not replaced because the medical field does not know enough about them yet.  I also never realized how some people will assume, fear, judge or treat you when you have an invisible illness or an illness they don’t understand.  Thankfully my family and closest friends were there for me when I needed them.

Throughout this illness I have learned a few things.  Life is about overcoming obstacles and circumstances that are in or beyond my control.  It’s about making the most out of my relationships with family and friends, new and old.  It’s about finding my passion and the meaning in my life and doing everything I can to show that meaning to others and live that passion every day.  It’s about finding that person that will love me unconditionally and loving them back the same way no matter what the world throws at us.  It’s about forgiveness, and giving, helping others, and the notion of paying it forward.  And it’s about keeping things simple, laughing, and having fun.

Today I am very grateful for so many things.  I am still learning, searching, and a work in progress.  Honestly… this last year has taught me so much that I hope I always am!

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Author: kmuir2723

My journey started in February of 2008 when I was rushed to emergency with blinding pain in my head. I was taken by ambulance to have a CT scan and when it came back negative I was misdiagnosed with Ice Pick Migraines. Over the years I would return to emergency a few more times for the same issue and they would just treat it as a migraine because that is what they treated it as before. Since then my body and personality has been through many changes and many more misdiagnosis. From carpel tunnel, computer elbows, rheumatoid arthritis, Gluten Intolerance and erectile dysfunction just to name a few. My memory and concentration levels were getting fading. I had little to no energy most of the time and I was losing interest in things I used to enjoy. My social skills diminished and I struggled to be around groups of people without anxiety. When I could no longer function properly sexually I convinced my doctor to run more tests. The results showed an extremely low testosterone level. I thought to myself, no big issue, they make medication for that but my doctor chose to send me to an endocrinologist to find out why. In August of 2013 I met with my endocrinologist and after numerous tests a 4 cm Macroadenoma (pituitary tumor) was discovered. The tumor was putting pressure on my Pituitary gland which in essence shut down most of the hormones in my body. I no longer had a functional adrenal system. We will never know how long the tumor was growing but the neurosurgeon estimates up to 20 years. The MRI showed evidence of scare tissue formation on the tumor from previous hemorrhages over the years. Upon review of the 2008 CT scan he pointed out the quarter size tumor that was missed. The migraines I was having was actually pituitary apoplexy or hemorrhages. I was very lucky to be alive. The surgeon informed me they lost a patient on the table the day before for the same apoplexy. My tumor was removed transsphenoidally on Oct 7th. 2013. They could only remove about 80% of it because of the proximity to the carotid arteries and optic nerves. There is a high probability it will grow back and if so, Radiation therapy is our next weapon against it. My hormones may never return to being created naturally so I am on medications for Cortisol (Adrenal system), Thyroxine (Thyroid Gland), Testosterone, (Sex Glands) and Somatropin (Growth Hormone) eventually. Since my surgery I have become separated after 23 years. It was hard but this thing changed me as a person and I cant go back to who I was before, even if I could remember who that was. I also lost my best friend of 30 years to a brain Tumor in February. He was there for me during my rough time this year and I will miss him deeply. My goal now is to help others going through this challenge and help to educate people to fight our medical system for their health. Never assume no news is good news when you don't get results of test back from your doctor. Be your own advocate. My fight continues but every day is a blessing and I chose to live it happy.

5 thoughts on “What am I grateful for?”

  1. Just wanted you to know how encouraging your posts are to me! It took me 5 years to get diagnosed and my body is getting used to the hormones too and it is amazing what this illness can do to your state of mind as well. It made me really alienate myself and I found out who is really there for me. I get so depressed sometimes and i didn’t realize how much my illness was affecting my state of mind. I feel like I’ve been in a fog for a few years and I’m trying to reconnect with friends and some people aren’t interested and that’s okay. It hurts, but it’s necessary.

    1. Thank you so much for the kind words Hannah. I understand how you feel with friends and family. It can be very challenging. I am so happy to hear you are doing better too. Please feel free to find me on Facebook. I am always available to those that need to chat.

      1. I expect you can tell more of how your life has been affected, I feel for anyone who has suffered by hypopituitarism, as my son has suffered most of his life. He is having yet another op tomorrow, he is a warrior, and ohers to will understand,who has been through this real life of turmoil, just kep fighting that’s the key x

  2. THANK YOU dear kmuir for daring to talk openly about this ‘silent’ condition that affects so much of our life and thank God I found you. Only a fellow sufferer can understand, everyone else including our dear ones can only try to understand and be there for us.

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