Now what?

Ok, so much has changed in such a short amount of time. The Mayo Clinic is no longer an option for me.  The doctor who was assigned to my case has decided that he does not want me on as a charity care case. He feels that my diagnosis will require more in depth treatment and should be dealt with closer to home. So, now what? We had attempted to find someone in the area but were assured by my doctor that there were no competent sugeons in the area. So, again...now what?

My first instinct was to shut down. We found out the morning following my benefit, where I felt so much love and had so much hope that I slept like a log for the first time in months. We have worked so hard to get this trip together. We have done nothing but plan and cry and plan and all for what? I wanted to curl up in a ball and just give up. The same benefit however, had shown me how many people I had in my corner and I couldn't just say "Ok, this is it" and throw in the towel. I got on line and began to do my own research. I went to the National Endocrine Surgery site and began researching the surgeons they had close by. It was a quick process as there were like four in New York. I began calling and found that there was one surgeon in Rochester...New York, not Rochester, Minnesota, who had experience with my tumor and all of the diagnosis that could come from it. He also does the surgery a different way, where he would not go through my stomach, which has been through enough surgeries thank you, but through my back. I spoke to his nurse and though he was booking out pretty far I think she took pity on me and has squeezed me in to meet with him Monday. I also spoke to Columbia and Mt. Sinai who were both VERY interested in removing my adrenal gland, but not in the actual diagnosing what type of hormones mine was producing. It has all been like getting run over with a truck. Only this truck hit more than just me. My families had all taken off time for me to be gone, one of them was even coming with me, and we had to cancel all of our reservations. Not to mention I felt really scared because I thought everyone would think that I was going to go spend the money on...I don't know, whatever someone would spend $1500 on. I also had my doctor in a panic and apparently the doctor in Minnesota was having some guilt as he began calling my endocrinologist with tons of concerns about where I would go for surgery, and it was just all REALLY overwhelming. Meanwhile, I am working and going on with my normal day to day like everything is fine. Everything is so not fine. I feel like I am starting all over. I have this tumor, I have a tentative diagnosis of hyperaldosteroism, and I have enough money to close for the 4 weeks and travel. Now, I also have places that would really like to add me to their numbers for surgery, but not for the diagnosing, and long term treatment. And I have this doctor in Mayo who is SOOO worried that I will fall into the wrong hands, but not worried enough to do it himself. So, now I see. I go on Monday to meet this surgeon. I am bringing a ton of paperwork and results and even better my friend, Kristen, the RN who also went with me to meet the endocrinologist. I am trying to stay optimistic, but am scared to hope. I also feel pretty alone and scared, and am having a hard time being normal. So,  I will update everyone Monday, and ask that you keep the prayers coming. And if life could find a way to put the other drama and stress on hold for a minute, I would appreciate it. Thank you all again for reading, I am amazed at how much this helps.

Preparing

Well, I went this weekend and got Sophia a recordable story book that will have my voice reading her a story when I am gone, and the older kids little things to keep close from me. It has all hit me that in just a couple weeks I will be leaving my babies and don't even know for how long. We are scrambling to put together Olivias birthday party early so I don't mess it up on her and I am watching my husband try to picture holding this all together on his own. No mom there to fix Olivias hair perfect for the first day of school, no mommy there when Sophia is cranky and wants a cuddle and a song, no mom there when Justin gets upset at a friend and really needs to be left alone. How in the world am I going to prepare them when I am so scared of how I am going to cope without them? Who will make me smile when my girls are far away? Who will rub my ankles when they start to ache when my husband is here? Who will I eat dinner with and watch the new fall shows? Who will I crack jokes with when Justin is not in the next room? This just all seems impossible to ask of a mom. I know the strength will return tomorrow, but tonight after a great weekend with my kids and having date nights with Olivia, Justin and Lance I am just very heartbroken. Oh, and to top it off, my blood pressure has resumed it's climb to the top, so tomorrow also starts a new medication. On the plus side, a young man in the mall went up to my son and informed him that Jesus had spoken to him and told him that his mom was going on a trip but that he curses the tumor and all would be ok, he then informed me that I will find healing and recovery. Thank you Lord, and thank you all for your prayers and love.

Red tape

I was thinking that we had gotten through most of the red tape then BOOM! Huge flag on the field. Apparently my insurance is state funded and only pays about %20 of the cost of my visit to Mayo so they have decided not to accept it. Which means now I am going to be coming as a Charity Care Case...Let me just let you imagine how it feels as someone who works 60 hours a week and who has worked since the age of 15 be told they are going to be "charity". Like asking for help from all of my friends, family and their circles wasn't hard enough! My specialist called right away and called me back a few times and when I said "Maybe I just can't go" he informed me that wasn't an option, that this was the ONLY place that could save my life. No pressure Mayo clinic. So I am once again reminding myself that everything is ok, and listen to the doctors who are telling me that becoming a basket case is not an option. I will keep my head up, keep raising money and keep the fact that my kids need me right in the front of my mind. But today was not an easy one. I was on the phone for at least 2 1/2 hours and cried to more than one nurse. Thank you all for reading and for all the support. We are really far from the goal, but I have faith that we will get there, and I keep telling myself that this will all lead to the answer to all these questions and get me healthy again.

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.