Sometimes It's Hard

“I know it seems hard sometimes but remember one thing. Through every dark night, there's a bright day after that. So no matter how hard it gets, stick your chest out, keep ya head up.... and handle it.” 
― Tupac Shakur

Sometimes this is hard. I've been able to keep a pretty good attitude most of the time about not feeling well but sometimes it gets to be too much. Yesterday and today have been those days. Remember, I haven't felt well physically for over a year now. It is frustrating and tiresome. I have big plans and not the ability to carry them out. I also have my scope and biopsy coming up on Wednesday, I think now that it is close it is weighing heavily on me. Thankfully, a good cry, a lot of prayer and talking it out and I can usually get feeling better.

Last Wednesday I found myself back in the ER. I had been having lunch with friends, we were eating outside. The heat is always a gamble but we were in the shade and I seemed to do ok but I could smell someone smoking. I felt things tighten up then. By the time we had walked up to my car (about a block) I was having a hard time breathing and my voice had changed- always a red flag. I used my inhaler and my friends hung with me for a little bit to make sure I was breathing ok. I thought I'd be fine but when I got in my car I remembered that I had been driving on an empty gas tank for three days. I knew I couldn't push my luck anymore. I stopped to get gas and the smell of the gas did me in. 

So, there I was at the ER. A man in our neighborhood, who had no idea I'd even been sick, tried to call me and when I didn't answer he called Doug. I called him back after I was released. He asked me about my illness and he said; "I''m sorry you have to deal with this." My reply to him was; "It's ok, it's life and we're learning to live around it."

I thought about that later and even though I hadn't really thought that answer through when I said it, I think that's really the truth. I'm not learning to live WITH this. I really hate it. I was really angry that I was back in the ER and I was really sad yesterday and this morning that I even have to deal with this and that there may not be a lot of change in the future. BUT I am learning to live my life the best I can under these circumstances. When I'm feeling ok, I do everything that I can, when I'm feeling bad, I sleep as much as I need to and I enjoy the time cuddling with Mick or just sitting on our deck and watching the kids play. Sometimes that's the best I can do and I'm learning to be ok with that.

Blessings

"'Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You’re near
What if trials of this life are Your mercies in disguise" -Laura Story

Having a chronic disease is an interesting experience, especially a lesser known one and one that lands you in the ER often. Every Dr treats me differently. Some seem not to believe it's as serious as it is, some scare me with how serious they take it and others just don't know how to handle it. It's often hard to know where to turn and to know if you're imagining the symptoms. I think this is the same with all chronic illness, it's for sure been that way with both my depression and this Mast Cell Disease.

I know that even though the Doctors all treat it differently, and treat me differently, I know that our master healer, our Heavenly Father, knows what is happening and He knows the directions we need to go to get the help that is needed. I also know that He could just heal me but He allows us to experience these things "to give thee experience".

During my first hospital stay, when we had no idea what was going on and I think we all just thought it was an allergic reaction- a severe one- but something that would just go away. I was lying in my hospital bed and I was alone and a little nervous and not sure how to proceed. I was wanting a priesthood blessing and trying to think who I could call to come give me a blessing. Less than five minutes later Bishop Andrus and his counselor, Rigo knocked on my door. I exclaimed "I was just wanting someone to give me a blessing!" My Bishop smiled a knowing smile and I knew that he had been sent by my Heavenly Father at that time to help me.
They didn't stay long and we didn't talk much but they gave me a blessing. I'll admit, I was hoping for a blessing of healing and that I'd be told that I would be all better quickly. That's not the blessing I received. I was given much comfort and my family and I were blessed to have the strength that we needed. The thing that really stood out to me and has stayed with me all this time was that I was blessed "that the Doctors would be able to find the diseases that were in my body and be able to know how to help me with them." I was also blessed that I would be "led to the right doctors who could help me."
These two sentences have given me much strength and hope. I believe that these priesthood blessings come from the Lord. The men who give them, if they are worthy and in tune with the spirit, are just mouth pieces for the Lord.

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!