Weekend Off of Worry

I took a weekend off from stress this week. I spent time with girlfriends and just tried to relax. It was amazing, I almost felt like my old self except that it doesn't seem to ever really leave my mind. I think about it alot, we talk about it alot, and I guess there is just no escaping that I am sick. And scared. We also had our oldest daugther go camping for the weekend, and it was so hard on me. I honestly don't know how well we will do so far apart, but this was a good baby step. Today I am forced to deal with the illness as I have been unable to stay awake. I have slept most of the day and wasn't able to do any of the things I had wanted to do regarding cleaning, fund raising, or taking the kids for a walk. All in all, I guess this weekend of trying to pretend things are normal was nice, but it only reinforced how abnormal my life has become. But I feel closer to some amazing ladies and feel that they will be a safe place to land when I feel like falling.

This week has been rough. I find that I am crying a lot and my blood pressure is starting to slowly climb again. I have always been a grit your teeth and get through the hard part kind of girl, but this seems like I am damned if I do and damned if I don't. I have never been pushed so far out of my comfort zones and so not in control of my life. It is a hard road. I know that I am going to have to go alone, but have not had to do anything this alone since I had my son and got married. Now it seems my health is fading so fast. Energy is non existent, I have a headache from morning til bed, my legs hurt constantly and my moods are all over the place. It's a lovely time to also have to fund raise when you have no idea what you are doing, which is why I am so appreciative to everyone who is trying to help with this stress and show me that the good in the world can give me hope. Thank you all for reminding me that I am not alone.

The Journey to the journey

I am writing to ask for help. This is not something that I am accustomed to doing, but sometimes life makes you step out of the comfortable.  I am a mom of 3; the most recent was born on Thanksgiving last year. They are amazing kids, Justin is 13, Olivia is 8 and Sophia is 7 months.  I am also a wife and run a small home daycare. 

When our oldest daughter was born I began to gain weight and have a lot of leg pain and marked fatigue. It was not debilitating, and my doctors diagnosed it as fibromyalgia and slow metabolism. Over the next few years I began to feel worse but could find no reasons. I began to experience heart palpitations and was told that I should consider weight loss surgery, even though we could not figure out why I was still gaining weight. I had also began to have a problem with my job in the medical field, I was often exhausted and in to much pain to work my whole shift at the busy Neurosurgeons office I was employed in. We decided to do the surgery and I left my job to open the daycare. We were optimistic about the future and soon began to try to have another baby. My pregnancy was great, I had more energy, I was not in pain, and I felt like my old self. We had no idea what was about to happen.

Our daughter was born on Thanksgiving and we were very excited to go home and get to know her. Unfortunately as soon as I delivered my blood pressure began to climb and by the time I was discharged from the hospital it was dangerous. I followed up with my doctor who sent me to my first specialist. In that time my blood pressure was completely out of control. It took the nephrologist 6 medications to get my pressure down, and he discovered that my hormones were all really out of sorts and then found that I had a tumor on my adrenal gland. He diagnosed me as having Primary hyperaldosteronism also called Conn’s Syndrome. It is a very rare disorder and I was sent to a Endocrinologist to verify the diagnosis. Unfortunately, though I have all of the symptoms, the only place that can officially diagnose me and also the only place who could remove the adrenal gland with a good success rate is the Mayo Clinic in Rochester, Minnesota.

My specialists and primary care have sent paperwork to the head of Endocrinology and he has agreed to take me on and would like me down to begin testing and treatment on September 5^th.

The issue is that I would be responsible to pay for transportation, lodging, and also would have to miss work which means I will not be earning a paycheck during my stay, which could be as short as 5 days with a return surgery visit, or could be as long as weeks if they decide I need immediate surgery. 

In order to give my children back their mother I have no choice but to look to the kindness of strangers, friends and family.