Today is National Cushing's Awareness Day. BOY-O-BOY am I aware! It seems like a lifetime ago that I was diagnosed with this awful disease. The "cliff-notes" of my journey go a little something like this:
After a 3 year battle to get my diagnosis, I was diagnosed and had my first pituitary 5 mm adenoma removed in 2005. The recovery was really rocky. My body had taken quite a beating. It took me 9 months to ween off the hydrocortisone - all the while barely surviving withdraws every time I dropped my dosage. BUT, that buggar was out of my head and I was happy to be free of it! The next 2 years were all about some pretty severe ups and downs. I flip-flopped to what they thought was Addison's Disease and was Adrenal Insufficient (AI). I went through doctors like under ware. As difficult as it was to find someone to give me my diagnosis, it proved just as challenging to find a physician to treat me afterward - more so in fact.
In the meantime, was learning some really hard lessons. I was finding out who my real friends were. There were people in my life that didn't want to know what was going on. It was too much for them. They were unable to cope with a friend who was chronically ill. And while I was sad to lose them in my life, I understood. I was living this nightmare, and I didn't want to deal with it. I also saw the true colors of extended "family" who simply refused to pay attention. To them I was just lazy. It was all very hurtful, and to be honest, I still carry resentment towards some people today.
On the bright side, there were shining stars - people sitting on the sidelines of my life until this all started - that stepped up and won my eternal gratitude for being solid pillars of friendship and so much more! I will love them forever for the simple and the grand gestures that they made.
Then there is my husband who has been an unwavering rock through all this. We weren't married when I got sick, so he could have left. I would have understood if he would have said, "I didn't sign up for this. I'm sorry it is just too much." It would have been painful - but it's so true....this is TOO MUCH! But he didn't. He stood by me. He patiently rode out every shit storm that came our way. He continues, to this day, to be the only person that sees the worst that this disease brings out in me, and by some miracle, he stands faithful at my side. I could never express my gratitude and love for this man and it pains me that I still fail him in many ways as I continue to battle this god-awful disease.
At one point in my recovery. in late 2007 - I started to feel good again. We were thrilled to get the "ok" from my doctor to start trying to have a baby. We saw the specialists, spent ridiculous amounts of money and almost 3 years "trying" to conceive. It was a long, emotionally and physically draining time in our relationship. None of our efforts or procedures worked. We stopped treatments late in 2010 as we were preparing to move. To be honest, I was ready to stop. I was exhausted and sick to death of needles, pills and out patient procedures. I had to let go. It may not sound like much, but it is an open wound for me. I can tell you that of all the dreams, of all the certainties and uncertainties in my life, of all the things that I've known, of all the experiences I've had - there has been one constant and that is that I wanted to have children. But, I was facing the fact that it wasn't going to happen. This is a mountain of disappointment and despair for me that I still have not comes to terms with...but that is a whole other ball of wax.
And so here we are at my current place in my journey. I have another tumor. Actually, I've have had #2 (Just in case you caught the subtle jab - Yes! When I refer to my second tumor as "#2" I mean to refer to it as poop!) since the first MRI after my 1st surgery, but they were unable to identify it as anything but "possible scar tissue" until 2009 when they determined it was in fact another adenoma. Suddenly the battles I had been enduring and the reason for them came into focus. I had/have another tumor!
I was sad when we found out there was another tumor, but I wasn't completely destroyed. I figured, "Hey, at least I already know what the problem is. I won't have to suffer through trying to get a doctor to listen to me this time. I can handle this. I did it before, I can do it again!!!"
Sadly, that isn't the way it worked out. I was devastated to come to the realization that my previous diagnosis and all that I had been through didn't mean diddly squat! I was back at square one listening to doctors tell me I was just fat and needed to lose weight. It was actually more earth-shattering than the original process because I was shocked at the blatant disregard for my medical history and the simple lack of knowledge in the medical community about Cushing's Disease. I've never been more frustrated and more down-sodden. Finally, after years of rallying and trudging on, after all that I've lived through, I just wanted to give up. I suddenly couldn't find my brave face. I couldn't muster any positive thought. All I could see were the "can'ts" - Can't do the things I love like skiing, hiking, and camping because of muscle fatigue, Can't have people over for game night because I have to screen everyone for illnesses because my immune system is so compromised, Can't be a weekend warrior because I need to actually rest or I will make myself sick, Can't have children because my body is sick, Can't be positive about all this anymore because there just isn't anything good to focus on....CAN'T! CAN'T! CAN'T! It seems that I sometimes feel like Jack from the movie Titanic. I survived the actual ship going down, only to die in the cold dark sea that is CUSHING'S DISEASE! Grrrrr!
And so today, as I sit at home, ironically sick in bed, I think about Cushing's Awareness day. My hope is that at some point in the near future the medical community can get a grip on this disease. My hope is that I will continue to find strength to accept my reality and self-compassion to adapt my ideals to this reality. My hope is that maybe, by telling my story just one person feels less alone in their journey with this awful disease. My hope is for another doctor to continue Dr. Harvey Cushing's legacy of forward thinking and find a CURE for this awful disease.
God bless u I just went to the doctor today who looked at me and said she looks like she has can having an disease u no the skinny extremities the moon looking face and the big mid section I think we need to figure this out ASAP... So I'm new to this but I want to learn all bc I think I really might have this unfortunate disease. I already have fibro and lupus so... It's tough but god bless u mama...
ReplyDeleteGod bless u I just went to the doctor today who looked at me and said she looks like she has can having an disease u no the skinny extremities the moon looking face and the big mid section I think we need to figure this out ASAP... So I'm new to this but I want to learn all bc I think I really might have this unfortunate disease. I already have fibro and lupus so... It's tough but god bless u mama...
ReplyDeleteHang in there I went thru what you did 4 years ago. I ended up at the Mayo Clinic in Rochester. So amazing! They've seen a ton of this disease and didn't think I was crazy! Dr took one look at me-no labs- and said "easy you have cushings!"
DeleteIn 2010 I began to experience a swelling sensation in my legs behind my knees, but without any visible evidence of swelling. Upon going to an orthopaedist he ran xrays and told me that I did not have arthritis. Symptoms persisted and I also began to experience fatigue. I continued seeing various other doctors and had numerous tests run, all discovering nothing. In June of 2013 I saw a neurologist who then ordered an MRI of my spine, neck and head. It was then that a meningioma was discovered at the top of my brain. After meeting with a surgeon at UCLA and having my case presented to the oncology board for review, they opted to not operate or treat, but to monitor for growth. Based on the location, it was their hypothesis that it could be affecting my legs and causing the described symptoms. Every 6 months I would have an MRI, so far it has not changed. Yet over the last couple years, the fatigue has increased and I have also been dealing with a chronic coughing/breathing issue. Pulmonologist & Cardiologist both said everything was clear; however, in the CT of my lungs, an adrenal adenoma was discovered but not revealed to me. I later requested the report and found the note myself. I then met with my GP who referred me to the Endocrinologist who ran tests and found that I did have an elevated level of cortisol, but did not exhibit any of the physical signs of Cushings. His recommendation was to run the tests again in 6 months (October) and see what they look like. He said the tumor is too small to recommend surgery.
DeleteSo, here I am, the healthiest sick person around. My 10-15 pound weight gain is in my opinion notable. Some days my legs feel like lead weights and I feel as if I can barely walk. Most days I just want to collapse into bed at 8pm. I have also now noticed that my typing & writing is compromised; always a super speller, I am finding that I transpose letters & combine words. The cough/breathing issue that I once thought was a separate issue, now makes me wonder—is everything related? Just hoping to find someone that can relate.
In 2010 I began to experience a swelling sensation in my legs behind my knees, but without any visible evidence of swelling. Upon going to an orthopaedist he ran xrays and told me that I did not have arthritis. Symptoms persisted and I also began to experience fatigue. I continued seeing various other doctors and had numerous tests run, all discovering nothing. In June of 2013 I saw a neurologist who then ordered an MRI of my spine, neck and head. It was then that a meningioma was discovered at the top of my brain. After meeting with a surgeon at UCLA and having my case presented to the oncology board for review, they opted to not operate or treat, but to monitor for growth. Based on the location, it was their hypothesis that it could be affecting my legs and causing the described symptoms. Every 6 months I would have an MRI, so far it has not changed. Yet over the last couple years, the fatigue has increased and I have also been dealing with a chronic coughing/breathing issue. Pulmonologist & Cardiologist both said everything was clear; however, in the CT of my lungs, an adrenal adenoma was discovered but not revealed to me. I later requested the report and found the note myself. I then met with my GP who referred me to the Endocrinologist who ran tests and found that I did have an elevated level of cortisol, but did not exhibit any of the physical signs of Cushings. His recommendation was to run the tests again in 6 months (October) and see what they look like. He said the tumor is too small to recommend surgery.
ReplyDeleteSo, here I am, the healthiest sick person around. My 10-15 pound weight gain is in my opinion notable. Some days my legs feel like lead weights and I feel as if I can barely walk. Most days I just want to collapse into bed at 8pm. I have also now noticed that my typing & writing is compromised; always a super speller, I am finding that I transpose letters & combine words. The cough/breathing issue that I once thought was a separate issue, now makes me wonder—is everything related? Just hoping to find someone that can relate.