Selective Thoughts Mean A Better Life?

“You need to learn how to select your thoughts just the same way you select your clothes every day. This is a power you can cultivate. If you want to control things in your life so bad, work on the mind. That's the only thing you should be trying to control.” -Elizabeth Gilbert Eat, Pray, Love 

I'm a type A personality which means I like control; letting go means the unknown. I hate not knowing what tomorrow will bring. I have a hard time accepting that my mom may never be fine again. Perception plays a huge roll in life and it's always easier said than done. If things were that easy everyone would be happier. Trying to remain in control also tends to include my emotions and I hate letting my sad emotions show. For example, today was an amazing day spent with a friend, but as soon as I got home reality hit and I just wanted to cry until I couldn't cry anymore. When you are alone thoughts tend to take over. I'm tired of controlling my emotions, but cannot just let my thoughts run free. Even now I know most of this probably does not make sense because my mind is so jumbled. 

Another Twist, Another Turn, Another Up and Down

 "Through the twists and turns, ups and downs, in happiness and in sorrow, life teaches us...TO LIVE!"

Once again I struggle to find the right words to express how I feel.  I've seen a little progress with my mom as far as her ability to eat, but there are still really bad days where she can't eat at all. She's off with my little sister, but the night before she left she wasn't feeling well. She went to the doctor and had a virus. To me that's horrible news because I know her body might not be strong enough to fight it off. Unfortunately my mom likes to prove to herself and others that she is fine when we all know the truth. The bad thing is the virus should've been my biggest concern, but like always I was wrong. My mom had blood work done and results came back showing she has Crohn's Disease on top of the SMAS and Nutcracker Syndrome. Thankfully it does help explain why she's still having abdominal pain. The crazy thing is Crohn's Disease usually occurs in people between 15 and 35 years old, but then again...my mom is an exception.

Tomorrow's Stories

"Today's worries are yesterday's fears and tomorrow's stories"

Every day that I attempt to write I try to find a quote that fit's the mood and topic and I think today's quote fits my mood the best. All of my "yesterday" fears are finally fading. I finally, truly, see the sun shining a little more brightly. Yesterday my mom and I took another trip back to the hospital to see her doctor for a post-op checkup. We were told that it was a successful procedure and he fully believes that my mom will not have any more major problems or pain. So now where do we go from here? Every day is still filled with a little worry. I find myself constantly looking at her, checking on her, and still worrying some. I have seen a huge improvement which has lifted so much stress off my shoulders. My mom not only has her appetite, but does not hesitate to eat. She's trying to eat a lot more, rarely doubles over in pain now, and just overall looks so much better already. At this point I'm just excited to what the next day brings and watching her become stronger and stronger. I can't wait to see what tomorrow will bring. I just look forward to having not just my mom, but my best friend back.

Recovery Can Be a Long Road

Trying to suppress or eradicate symptoms on the physical level can be extremely important, but there's more to healing than that; dealing with psychological, emotional and spiritual issues involved in treating sickness is equally important.
Marianne Williamson

A huge weight has been lifted off my shoulders just from having this surgery over and done with, but now we face the challenge of healing. Tuesday was a very very long day which began at 4am, arriving at the hospital at 5:15, surgery starting at 8:20, and lasting 3 hours. The hospital is very crowded so mom was stuck in the recovery room until they could find us a hospital room. Mom didn't have any complaints about her nurse but I did. I got annoyed that he wouldn't even let her speak to my dad and I wasn't allowed to stay back there long, but other people, with different nurses, got to stay longer. Mom had been fighting a migraine and spent the majority of yesterday asleep. This morning she was doing much better, went off the pain medicine, went for a few walks, including one very early one at 4am. Unfortunately this good feeling didn't last long. :/ I left to go back to the hotel to do laundry and grab some food. When I came back mom was feeling bad again. She was cold, but head was hot, her head was hurting again, and then she would get hot and want all the blankets off. I'm praying that tomorrow's test goes well so she can start having liquids to drink. We might get to go "home" by the end of the weekend, otherwise we are looking at Monday or later. I pray that the nurse gets here quick with more headache medicine. Hopefully I'll sleep a little tonight. I'm tired of being tired, but I want to make sure my mom is okay before I even attempt sleep tonight. There will be a lot of changes and adjustments to make in the upcoming months. We may have a new normal. My mom will also have to adjust to the change of looking and perhaps even feeling different. For me, as long as she is happy, healthy, and pain free, that's all that I ask for.

Have Courage When Looking Fear in the Face

 "You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'- Eleanor Roosevelt

Every day for the past year has been an experience, a struggle, and a test of strength. Tomorrow is my mom's surgery and everyone is anxious. Once again we are facing the unknown. Every surgery, patient, and outcome are different so we really don't know how my mom will do or feel after this procedure. From what we have read and been told it seems to be a difficult recovery, but that's expected when organs are cut, re-routed, and sewn back together. I've been trying to keep my mom's thoughts positive and sometimes it seems so difficult when other people start sticking their nose where they don't belong. Everyone is nervous and afraid of the unknown. I know we can get through this, I know my mom will be okay and most importantly, I know that this will help her feel a lot better. Saying a prayer for my mom.

Lost Mail Arrives

“Strange as it may seem, I still hope for the best, even though the best, like an interesting piece of mail, so rarely arrives, and even when it does it can be lost so easily.” -Lemony Snicket, The Beatrice Letters

I'm still in shock from the news I received today. It's like those stories you hear about where a letter has been lost for years, but randomly, unexpectedly arrives. I had hope that we would find a doctor that would not only confirm my mom's diagnosis, but would also be willing to treat her. As the months have worn on that hope has gotten smaller and the desperation has grown. I've watched my mom lose more and more weight and had a harder time keeping food down. We've gotten our hopes up each time we've found another doctor only to hit a dead end so that's why today feels unreal. I keep thinking that I'm going to wake up and this will be a horrible cruel dream, but it's not, it's real...our lost mail has finally arrived. Early this morning my mom went in for more of the same tests just at a different hospital. I emotionally shut down once I received her text stating that the resident thought it was just reflux and compression of her duodenum yet nothing more. I didn't want to respond, how do you respond when you have continued to feel so let down. I guess I was just trying to pretend that things were okay and we hadn't hit another dead end. Thankfully I did respond to my mom which resulted in some wonderful news. The doctor at Johns Hopkins is certain my mom has SMAS and wants to do surgery on her asap. Now my mom must decide to risk a surgery, where several SMAS patients have ended up with complications or attempt a feeding tube. No one can make this decision for her, but I'm thrilled that we found someone finally willing to take action and help her.

Enduring the Darkness

“I will love the light for it shows me the way, yet I will endure the darkness because it shows me the stars.” ~ Og Mandino

Close your eyes, say a prayer, hold your breath, and wish for the best. It's taken me awhile to update because of the stress, disappointment, holidays, and wedding, but now it's time to attempt to put my thoughts into words. My mom's last trip to Florida did not end well. After a round of tests the doctor said everything was normal. Thankfully my mother was persistent and the 3rd year resident told the doctor she was pointing to her SMA. The doctor wanted to immediately admit her to the hospital, but my mom was flying back the next day and we had to finish getting everything ready for Thanksgiving and the wedding. Good news is Johns Hopkins agreed to take her case, scheduled her for an appointment, and she sees that doctor on Wednesday. I'm afraid to let her go on her own because she has been feeling worse, throwing up more, and becoming exhausted much easier. I don't want her to travel alone, but like myself, she is very stubborn and trying to prove to herself and everyone else that she's okay. On December 3, she gets a feeding  tube put in. I might have to fly out to Florida and drive her back home. 

 I was really worried about her last week between family, Thanksgiving, and the wedding my mom was feeling very weak. I don't think her nausea has ever been this bad. Plus, her migraines are becoming worse and lasting longer. One of the hardest things to handle was my dad's family being over and trying to get along after them not being part of our lives for ten years. There's more that I wish I could write, but everything is still too jumbled up.