I Got This

Be calm and strong and patient. Meet failure and disappointment with courage. Rise superior to the trials of life, and never give in to hopelessness or despair. In danger, in adversity, cling to your principles and ideals. Aequanimitas!-Sir William Osler

 

So why do I begin each little blog with a quote? For me it's like a reminder, a message, or something to lift my spirits and usually ties into what I'm about to write. One year we have been waiting. One very long, stressful year. What have we been waiting for? A judgment...some high and mighty person to make a judgment on if my mom is sick enough to receive disability. So here it is! The big day! We get to face the judge and finally hear what she has to say!  

 

WRONG!

 

After so much waiting, stress and anticipation we learn that some doctor is now unable to make the hearing. :( Who knows when we will finally appear before the judge. Last time it was delayed two weeks. I know some people think, well you've waited this long what's another few weeks? Why is it that an obese person, with no other problems, can get disability, but someone with a rare syndrome it is so much harder? Even if my mom gained 10-15 pounds that doesn't mean her problems will magically disappear. The one thing that will make things better is no longer having that compression on her intestines.

 

Be calm. Be strong. Be patient. Seems like those are 3 of my worst attributes. Calmness is kind of a thing of the past for me. How can I be calm when doctors and people say "oh you're looking good"? Patient is non-existent. I'm tired of waiting. I'm tired of seeing my mom suffer. Strong? Ha! Some days I just want to stay in bed all day and cry. I cry because I know the end result we could face. I cry for those that have lost this fight. I have to be strong though. I have to be the one to try and hold it together for me, my mom, and my little sister.

 

Rise up against the trials of life. So much easier said than done. Do you remember the old cartoons where the character is climbing a ladder and the ladder keeps moving down, but the character stays in the same spot? That's how I feel. No matter what progress I feel like we are making we are still in the same rut. I know I'm not the only one. I know that thousands of people go through similar things every day. When I think about that it does help me get through the day. Knowing I'm not alone in this fight and others can empathize helps me push through things. Life can always be worse and I've said that over and over again in these posts.

 

Cling to my principles and ideals. Knowing I will one day have this non-profit set up makes me happy. Being able to help others when no one could really help us is my goal. Giving up is not an option and never will be an option for me. Like I sometimes tell others even when I'm scared, unsure, and upset...I GOT THIS! :)

For everything in life there is always a beginning and an end

The brave man is not he who does not feel afraid, but he who conquers that fear.

Nelson Mandela, Autobiography

“For everything in life there is always a beginning and an end. This is the tough part the most difficult thing when you see that it’s coming: The end.”
― Seve Ballesteros

 

 

How do you conquer fear? Sometimes fear is just a figment of our imaginations or an event that caused us to become afraid. I remember back when I was a gymnast and had grown the smallest bit, but one day hit my feet on the bars doing a giant. Immediately I was terrified of becoming seriously hurt. My coach knew the only way for me to get over my fear was to make my get back on the bars and learn to bend my legs at my hips so I wouldn't smack my feet again. Despite staying hours later after practice and completing my set amount of giants that fear was still there. I actually threw away the opportunity to achieve my best all around score ever at that time, but at the meet I walked up to the bars, saluted to the judges, and walked off the mat. 10+ years later I can't tell you what it took to overcome that pathetic little fear, but I wish I could remember. Fear is a constant and daily part of my life and I wish I was more like my brother at times with his ability to block things out so they don't bother him.

 

I know I've talked about this a lot, my fear of losing my mom, but it's not just my mom whom I fear losing. I've taken on a sort of responsibility for those with SMAS. I want to protect them, support them, and help in any other way possible. But, we all reach our breaking points, our points when we can no longer hold it together. This is my outlet and maybe my way of working through my fears. In our community there is always hushed talk about who is fading and might be the next one that SMAS defeats. It becomes emotional when it is someone that you have grown close to and things look bleak. I am a difficult person because I never want to see someone fade away so I get kinda bossy and frustrated. In my mind it's almost like "If they just did this they'd get better." Reality isn't always that way though. I'm learning that sometimes people know that the end is coming and I just need to support them the best that I can until that dreadful day arrives.

 

 

 

 

 

 

 

Lord Above

Third Day "I need a miricle"

 "And in your hour of desperation

Know you're not the only one

Prayin', 'lord above, I need a miracle.'"

Sometimes I want to scream at doctors. Their job is supposed to help people, but maybe, in this day and age where people sue over anything, it makes dotors reluctant to help. I don't know why doctors twist words and basically make things up. Why can't life be simple? Why can't you go into the dr office and they offer possibilities or solutions. I know many people with this illness that basically give up since dr after dr blows them off. 

I started writing this on Monday after our initial consult. We met the doctor, I was optimistic, then we saw his report stating that we were trying to disprove my mom's illness, that she only had possible SMAS, and no apparent distress. I was ready to kick ass, but was unaware that things were going to get worse. We met with the vascular surgeon who proceeded to inform us that there is no obstruction of her duodenum therefore she does not have SMAS anymore. ?????? He also told us that she has wide open veins and arteries so there was nothing he could do. I lost it at that point which was my downhill slide for the day. He never printed off the CT report and I never saw it until after we left the GI's office. The GI repeated what we already knew from the vascular surgeon, but as soon as I read my mom's CT report I was shocked. It clearly stated that her left renal vein is being compressed!!! That is a related symptom to SMAS, nutcracker syndrome,.

So where do we go from here? Where do I go from here? My heart is heavy and tears keep welling up. In desperate need of a miracle. In need of someone, anyone that can help "cure" my mom. My mom is my world and I don't want to lose her.

God's Will

George Clancy "Bad Things Happen To Good People"

"Cause good things happen to bad people
If justice was served
We'd all get what we deserve
But bad things happen
Bad things happen
Bad things happen to good people"

I drive myself crazy trying to figure out "why." I will drive myself mad unless I learn to let it go and just accept that it is God's will. I believe that when I can truly do this 100 percent I will finally feel a little more free. We cannot live in the worries of tomorrow because we will forget to live. Every moment that I have with my mom is treasured and even though we may fight and argue like mothers and daughters do I still love her with all of my heart. 

Over the past few months I've gotten the pleasure of really getting to know another Warrior. She is close to my age and my heart aches for her and her family. Like my mom her SMAS was developed by a traumatic accident and was also unavoidable. She, like me, constantly questions "why" and wonders what her future will be like. I just want to hug her tight and make everything in her world alright. She's gorgeous, funny, and a true friend who deserves everything this world has to offer. 

We all struggle with God's plan and maybe one day we will be privileged enough to realize why things happened the way they did. Until that point I will continue praying for my mom, my friend, and all the other Warriors struggling with this horrible syndrome.

DO YOU MISS YOUR NORMAL LIFE?

I have so much chaos in my life, it's become normal. You become used to it. You have to just relax, calm down, take a deep breath and try to see how you can make things work rather than complain about how they're wrong.

Tom Welling

“Normal is an ideal. But it’s not reality. Reality is brutal, it’s beautiful, it’s every shade between black and white, and it’s magical. Yes, magical. Because every now and then, it turns nothing into something.”
― Tara Kelly, Harmonic Feedback  

 

 I was asked yesterday "do you miss your normal life?" As soon as I read the question tears started flowing. Even at this moment tears are rolling down my face. What is normal? What was normal? Normal has not been in my vocabulary since January 1, 2011. On January 2, 2011 my family was in a car accident that would forever change our lives. My mom unfortunately suffers the most, which I have discussed in the past, but today I want to focus on me. 

 

What was normal? Normal to me and my family was being able to go out and have dinner without servers giving my mom looks when she ordered a small meal. Normal was going to a theme park with my mom and her keeping up with my every step. (I can be a fast walker) Normal was never having thoughts about my mom not being there on my wedding day due to being in the hospital or fears that she may never meet my future children. Normal was being able to go out with friends without worrying about taking my mom to the grocery store. Normal was playing around at Walmart or Target without being on a time restraint. Normal was not having to worry about any "what ifs."

 

What is normal now? My normal now is constantly checking up on my mom. Normal now is giving up weekends with my husband to ensure my mom is taken care of when she is in town. (Plus I miss seeing her) Normal now is squeezing in time for the few friends I have left, but those that stuck around are true friends. I am lucky that they are so loving and understanding. Normal now is looking over my shoulder when out with my mom to make sure she isnt doubled over or clinging to the shopping cart. Normal now is spending 10 minutes in a store rushing around to get what she needs before she becomes too sick. Normal now is spending every spare moment researching Superior Mesenteric Artery Syndrome and figuring out what else we can try to help her get better. New normal is knowing that there is a chance my mom could die from this syndrome, but I will do everything I can to avoid that outcome. New normal is now an appreciation for life, for the love of my mom, gratitude for my husband, his family, and my friends for always being there for me. 

 

My life in some ways would be better if the car accident had never happened, but it also wouldn't have brought me closer to my mom, pushed fake friends away, introduced me to some amazing Warriors and family members of those Warriors. I wish I could take their pain away, my mom's pain away, but this is the hand we have been dealt and I have learned to accept my new normal. 

rough days

“When pain brings you down, don't be silly, don't close your eyes and cry, you just might be in the best position to see the sun shine.”
―Alanis Morissette 

So I am trying to keep my head up, keep smiling, and praying that everything will be okay. Some days are just so much tougher than others. My mom had her surgery and is still in recovery. I unfortunately had to come back home to work leaving her alone. I worry every single day about her being alone since someone else can't manage to go over there. Today her incision opened up with makes me fear an infection. It's so hard not to worry. It's hard to stay strong. I don't know how others can do this day in and day out. I thankfully have an amazing man who is my rock. 

When you’re weak, I’ll be strong
When you let go, I’ll hold on
When you need to cry, I swear that I’ll be there to dry your eyes
When you feel lost and scared to death,
Like you can’t take one more step
Just take my hand, together we can do it
I’m gonna love you through it.

This post was originally going to be about my mom's upcoming procedure, but in a heartbeat our SMAS community is feeling heartache. One of our warriors stopped breathing in her sleep last night and the paramedics were called. We are all praying that she can pull through, but at the same time I pray that her pain and suffering ends. Life is short and that's why every moment counts.