Purpose

“Suffering is unbearable if you aren’t certain that God is for you and with you.”

This has been a really hard few weeks. My gut (sphincter of Oddi dysfunction) has started acting up again- I've already had to travel to Indiana twice in the last two years to have it repaired. The pain was so severe it landed me in the ER again. These times the Drs weren't very nice, actually they were quite judgmental. It has been a hard pill for me to swallow. Up until this time I have felt very taken care of and helped by the medical world.  My faith and hope have been wavering.

I have a neighbor who is an ER Dr, the last month or so he has been trying to help me cope with some that this breathing issue is putting into my life. The truth of the matter is that there isn't really a lot to do right now and the breathing is VERY difficult due to the smoke (from neighboring state's wildfires) that has settled into our valley. He sent me a text this morning asking how my breathing was. I responded that it was worse (we had talked last night). His response was; "Ugh. I'm not sure what else to do. I'm hoping there is a purpose in all this... It's so hard for you"

I was feeling very hopeless this morning. There are so many reasons for those feelings. This is a hard, hard trial I am going through. It has been a hard, hard trial for quite some time now. It's hard on my kids and my husband and my mom and my sisters and my neighbors. I feel guilt for that. I thought on the purpose of this. I believe God has a purpose for what comes into our lives. I still don't know what this purpose is. Maybe I won't know until the next life what purpose this is serving but I know that I am growing. I wrote the following in my journal;

"Sometimes Heavenly Father sends helping hands when I think there is no more hope. Texts from a neighbor. Messages from friends. Phone calls from the Dr offices seeing if there is anything they can do to help today.
Sometimes simply knowing that I'm NOT ALONE is the best gift I can be given. Sometimes we need others to help pull us out of the depths of our winters."

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!

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. 

More Tender Mercies Helped Me Survive... and thrive

The Lord’s tender mercies are the very personal and individualized blessings, strength, protection, assurances, guidance, loving-kindnesses, consolation, support, and spiritual gifts which we receive from and because of and through the Lord Jesus Christ….

The first 24 hours in the BHU were so tough, I think my body was kind of shutting down. All day I couldn't pee. I finally told the night nurse and he called the Dr. The Dr told the nurse to do an ultrasound and check my bladder levels, if it was over 300 ml go ahead and cath me. The scan came back between 450-500 ml. Luckily there was an experienced female nurse working too and the student nurse did the cath to make us all feel more comfortable. Over 580 ml came out! No wonder I was so uncomfortable! There were also some other physical reactions. It's amazing how stressed our bodies can get!

During the day we would have an individual therapy session with the social worker, meet with the psychiatrist, group therapy and recreation therapy. We were also given assessments every morning and night by the nurses, it was often a more comfortable place for me to talk- but don't worry, they all told each other every thing we said. :) Every person who talked to us would ask if I had suicidal thought, if I had plans and if I hope for the future. It took me until my last day there to say I had hope. When asked what that hope was all I could say was I hoped that I could get better.

In group therapy they would ask us to introduce ourselves. The first day I said; "I'm Stephanie, I'm here for the weekend." The third day I said; "I'm Stephanie, I'm here for depression." Finally by the last day I could say; "I'm Stephanie, I'm here because I wanted to kill myself." It was amazing to watch me grow and be braver and it became easier and easier to admit how I'd been feeling.

On the first day of group the only other person had been called out and the Social Worker said "imagine yourself as an old, healthy lady." As soon as she said this the tears started flowing because I couldn't picture myself as an old lady. I later told my night nurse that I couldn't imagine myself in one year let alone 30 years.

Rec therapy was a life saver for me. I'd forgotten how much I love to "create". The first day we modge podged little wooden boxes. It was so relaxing to me to make this cute little box. At first when I knew I'd have to make crafts I though for sure I'd throw it awas as I walked out the door. Instead they became things that were very calming and healing to me. And now that box sits on my bathroom counter and when I look at it I feel calm and am reminded that was my first step to healing. It also reminds me that I need to continue to create. We also covered notebooks and wrote down anti-anxiety play lists. And we made collages of things that were "self care" items for us. It was so therapeutic to cat and paste- kind of like kindergarten.

Each day as we did these activities we'd talk and sometimes share experiences. This was for sure where I did my best talking. It's much easier to talk when the hands are busy.

My last day, just minutes before I was to leave, we were asked to share what happened in our crisis situation. This was the first time I really opened up about what those couple of days before I came into the hospital had been like and how scary it was. I felt like a huge load was lifted off my shoulders.

While there I met some interesting people- ordinary people facing extraordinary experiences. Anna was my favorite. She came in the middle of the night after me and stayed until Monday morning. She came in addicted to heroin/cocaine combo. The first morning she looked like a shell of a person. It was so hopeful to watch her eyes brighten as she came alive. She was a 23 year old single mom of 2. She loved her babies and missed them dearly. She left to go to a rehab in California. I think of her constantly and hope the she can get better and show the world who she truly is! There were others- all impacted me somehow.

I am grateful for the lessons I learned while in the hospital the tender mercies I felt and the angels who were put in my path.