Hopeless

For years I have tried each day to get up and fight this disease to the best of my ability. I've done as well as I have because the Savior, my loving Savior, has strengthened me and helped me to do so. He has helped me to endure what I would have told anyone was absolutely impossible and beyond my ability. He has lifted me and carried me. He has been my strength.

However, with each passing day, and each passing hour, the weight of this trial bears down harder and harder. When I think I have hit my maximum capacity for pain and heartache, I am in awe as I awake the next day with deeper an more exhausting pain, that take me to my knees and causes each step to be filled with horrific shooting pain. 

Yesterday as the severe pains moved or I should say spread from my left foot to my right hip, I gasped to hold it together in spite of the pain. When I say spread, I could say, the autoimmune began to additionally attack my entire right hip, hip socket, muscles and tendons surrounding it. I thought the deep stabbing pain in my foot was awful but this. Oh the deep pain it shot was making it difficult to even breathe. I prayed and pleaded for relief. I tried everything all natural that I could think of.  I took pain meds and a hot Epsom salt bath to no avail. This pain was sticking around. 

As the day progressed, so did the pain. I awoke from my brief nap to the pain spreading to my,right arm, wrist, shoulder and hand. I couldn't type, I couldn't write and I couldn't even hold a drink in my hand. I cried out in pain and pleaded for help from the only one who can make a difference, my Savior. 

What causes me more anguish and heartache than the physical torment my body has been facing is the emotional despair running rampant in my heart. 

I have fought this disease, with my Savior's loving help, because I felt like I was still needed here. Still wanted. That my life was worth fighting for. That I mattered to those around me. 

Unfortunately, the good of me staying here, continuing to live my life as if it mattered, seems to be fleeing quickly. Those that have stood by my side and fought this disease head on with me, helping to carry me and easing the excruciating torment of loneliness and heartache, pain and isolation, is slipping. 

Someone once told me that as humans, we are great at rallying around those that are fighting something, helping them to get over it and being a strength for a certain amount of time. After that, it just becomes too difficult. When the illness is lifelong, the circle of those enveloping the patient dwindles. There is speculation that they are just trying to get attention or exaggerating or have just outlived their support. 

This is where I stand today. At a crossroad. The fork holds two very different roads. Neither appealing. Neither desirable. One, the easier way out...returning to live with our Savior. And although it seems ideal, and I do so badly want to return to Him, I am not sure that is the road that my Father in Heaven would yet have me walk.  And I am definitely not ready to leave my dear son. 

The other road is filled with pain, heartache and confusion. Fighting each day to live while feeling like a burden to all those around me and a mere obligation. 

The options, not the greatest I had hoped for. 

If the doctors and attorneys can make the next transplants doable, I must figure out what to do and who can help. Who wants to stand beside me not just those who feel obligated or pressured to walk this journey with me. 

I'd give anything to have everyone in my life be honest with me. I realize they don't want to hurt me and I am grateful for that. But I just need to know the truth right now. Beyond anyone trying to spare my feelings just adds to the fire. Because I don't know who to turn to or whom to believe. I wish I could put everyone's needs in a pile and know who to trust or ask for help. 

Unfortunately for Thomas and Hayden's sakes, they are stuck with me and we must walk this road together. 

For the rest of everyone, I am wondering if I write them all individual notes, expressing my love and appreciation and undying gratitude for their Service and release them from my life. They get a gold forever gratitude and get out of service card. Most of those close to me, I am sure have an automatic ticket to the celestial kingdom for how much they have sacrificed for me and my family. Something for which I will be eternally grateful. My love and appreciation goes far beyond words. It is the deepest level of gratitude for those that have walked this journey with me. 

Now, I feel as if I start a new journey, a new walk, and a new phase in my life. I'm not sure what this particular adventure entails or looks like. I'm not sure what turns and twists this new journey holds. The only thing that feels "real" or certain to me is that I need to find a new support group or team. One that hasn't already been tortured and walked thru the fire with me. I know I need my Savior, my husband and son by my side. But beyond that, I feel such gratitude and deep appreciation and thanksgiving for all those that have walked and journeyed by my side. But, I believe the Savior is requiring me to find a different way to approach this next phase of my journey. 

I may not know what l will be called to endure or walk next but I know this next phase of the journey will be very different than the last four years. The trials set before me will roll in. I will do my best to weather the storm. And whether it is me learning to face these trials only relying on the Savior or if He sees fit to bless me with a new support group, I do not know. But I have come far enough in this journey to realize that going back isn't an option. Staying in place doesn't happen. Our only choice is to pick up our feet and move forward. I must have faith that as I take the next steps, I will be guided to those that can help me along this path. Maybe, just maybe, just like Robert Frost stated, "I took the more difficult path ahead and it made all the difference." 

Whatever the Savior has in store, I will continue to trust Him.  And pray that. He will send me what I need, who I need, when I need it. I guess I cannot ask for more than that.....