Living

"Live life to the fullest because it only happens ONCE"

When people hear about what is going on with my body they often ask me if I'm afraid. They say things like; "I think I'd just stay at home in my bed and cry." Or "I'd never leave my house." My answer to them usually is; "I want to live while I'm alive. I want my kids to know I lived. And if I die tomorrow at least I lived today."
I truly feel and believe these thoughts. I haven't always, just a few short months ago I was fighting suicidal feelings, but, gratefully, they left me a while ago. And when I first became sick it was scary to leave my house and I often didn't want to. But during my last stay in the ICU my attitude changed and I decided I was going to live and love with all my heart. If I live four days or forty years I will have no regrets.
On Friday I had work meetings/retreat at Lake Tahoe. It was hard for me to decide if I had the energy to go and if I dared go that far from home. I decided I was going to go and I was going to drive with my kids and my mom so that they would get some sort of vacation this summer. It's been hard on them too.
Now, it is the middle of the night and we are driving back across the Nevada desert and I'm reflecting on our trip. It definitely wasn't a high adventure/activity trip, we mostly stayed at Holly's house and swam until it was time to go to Lake Tahoe. Grandma stayed at Holly's and showed the kids a good time while we went and stayed in a nice cabin and had meetings and a good time. It was hard at times. I had to leave meetings for a time in the afternoon for a short nap. I had to go to bed early and I had to use my nebulizer and pray a whole bunch. BUT I also got to laugh with my coworkers and got to go on a short walk to the beautiful overlook of the lake and I got to spend time with my sister and my husband (who flew in Thursday night) and I got to go on a drive with a new coworker who I now consider a friend. I feel lucky I got to have these experiences.
Then, today, on Saturday, was the best of all! We went to Folsam Lake. Holly and Frank brought their (Mom's old) boat and we took turns playing on the beach and going out and riding the tube. No one really wanted me to get on the tube but I knew I had to. The boat, water and speed are some of my happy places. I got on the tube and had a great time! I even jumped off it to swim back to the boat. That didn't go so well and they had to send the tube back to me to pull me in because I ran out of breath. But that was ok because I got to experience the thrill of the wind, the bumps of the waves, the freedom of the water and the movement of my body in the water.













I'm grateful for life! I'm grateful for being able to watch my kids love life and I'm grateful I have friends and family who are brave enough to let me live!

Life Happened

“I wanted a perfect ending. Now I've learned, the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next.
Delicious Ambiguity.” -Gilda Radnar


Oh there is so much to say... And all this time I thought I had nothing to say. The neck surgery went really well. My neck is healing great, much of the pain is gone and I haven't even had a headache since the surgery. My family and friends were awesome at taking care of me and having fun with me. Holly even came and stayed with me for a week.

But as seems to happen after my major physical journeys, my mental health crashed within weeks of the surgery and within days of coming off the pain killers. I once again spent a couple of days in the hospital for help with my depression. I came out with new hope and having connected with new Doctors and new education for my family. I felt we were really on a path back up.

This lasted for about 2 weeks when all the sudden I started having seizures. After a trip to the ER and being told to go see my psychiatrist about my medication, the psychiatrist told me that one of my medicines that I was on was known to cause seizures. I was immediately taken off that medicine and told never to take it again. Finally, I thought, now we can get on with life.

Wrong again! On March 8 I woke up with my lips looking like a lip job gone bad.

We went to instacare I was given some steroids and antihistamines and told to go to the ER if it happened again and my throat started to close off. Two days later, I woke up looking like I had been beat and I was having a hard time breathing so I called my friend and off we went to the ER.

They were shocked to look at me and see my whole body covered in hives.

No one knew what was causing this reaction- I hadn't tried anything new and the only unusual exposure I was having was the finishing of my basement. 

A few days later and another visit to the ER (that lasted 8+ hours) I was admitted to the hospital. I was treated for a few days and sent home. I was home for about 2 days and I ended up back in the ER. This time they decided that I needed to go down to Intermountain Medical Center so that I could be treated by an allergist and see if they could get to the bottom of this. Another long ambulance ride was in store. IMC is an amazing hospital! They know what they are doing and are used to treating bad things. Alesa met me at the hospital that night- even though it was late and my mom came down and spent the next couple of days with me. These two sure made this hospital stay easier since Doug couldn't be there because of work. While there the hospitalist consulted with an allergist/immunoligist and although I left the hospital with no more answers than I went in with, I was set up with an appointment with an amazing allergist. 

Dr Kelly, she is my hero. She looks like she's about 20 and a super model but has been in practice for 11 years so she must be about my age. She is kind and compassionate and smart and caring and thoughtful. She said that I was indeed experiencing true anaphylaxis. And she had me change some medications and went through anything else that could cause an allergic reaction. Because of my family history and my history she wanted me to see my GI Dr because there is an intestinal cancer that can cause anaphylaxis. I have had a pill camera endoscopy and indeed there was a growth found. No one is very sure what it is so I am waiting to go see another GI Dr who has the equipment to be able to go look at my intestines. Dr Kelly has diagnosed me with Mast Cell Activation. It is a disease that basically means an unknown reason for Mast Cell activation. Mast Cells are the cells that are activated when one has allergies. My body is activating them and sending them out for no reason and it is causing me to go into anaphlyaxis. She also told me that I have asthma, I've known for a while I had exercise induced asthma but didn't know I had it all the time. 

I take many anti-histamines everyday so I don't ever get hives on the out side of my body- although she says my insides are probably covered. Dr Kelly has tried to treat me with a shot but it twice sent me into anaphylaxis and landed me in the ER. So, now, I take a high dose of aspirin everyday with the hope that the Mast Cells will calm down. It has helped some, overall I feel better. But I have still had "episodes" and even a couple of stays in the ICU. 

This is a scary time of life and out of all my trials, I do believe this is the hardest I've ever been through. During my last ICU stay the Dr told me that he hopes the growth in my stomach is cancer- it can be removed.  The Mast Cell disease I will have to deal with for the rest of my life and "the rest of your life may not be too far". 

Through this all, if has been shown to me over and over again that I have a loving Heavenly Father who has never forsaken me. He has sent angels, both heavenly and earthly to watch over me. He is allowing this to happen for MY growth, so that I can become a stronger, better person.