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. 

My Wish

"Facts are stubborn things; and whatever may be our wishes, our inclinations, or the dictates of our passions, they cannot alter the state of facts and evidence." -John Adams

I've been procrastinating on writing even though some things have been spinning around my head. When trying to decide on a quote tonight I thought about just using "My Wish" lyrics, but they didn't quite fit in and the need for writing tonight actually stemmed from, yes I know, Dancing With The Stars. Corbin dedicated a dance to his sister which is what send my mind in motion. If I could have one wish I'd wish for my mom to be healthy. That's my one wish. I wish to have my healthy mom back and yes, a huge part of that is selfishness speaking. I want back the mom that I could go shopping with, out to eat with, to amusement parks with and not having to plan days around how she's feeling. Please do not get me wrong, it's not about having to help her out, it's about seeing her happy. Wanting my healthy mom back is about seeing her able to eat, walk without pain, and enjoy life. I want her healthy so she doesn't have this pain anymore. I want her healthy so she can enjoy life with my family members. There's also a sense of guilt with moving out in a few weeks. I'm afraid of what might happen without me being around to help her out. I'm afraid she's going to sink into depression. What's worse is my brother and sister in law don't come around much and won't be around much to check on her. 

 

 I'm thankful for my cousin. He and I don't talk very often, but at least he's the closest person to me that knows the fear of losing your mom at a young age. He has at least been there to lend an ear and give me some supportive advice. Love every minute with your loved one. Try not to think about the what ifs. Most importantly, stay positive. I have hope that one day I will have my "healthy mom" back. I have faith that things will work out and be okay and that my mom will not only continue to be a survivor of Superior Mesenteric Artery Syndrome, but she will be a healthy normal survivor. 

Facts are stubborn things; and whatever may be our wishes, our inclinations, or the dictates of our passions, they cannot alter the state of facts and evidence.
John Adams
Read more at http://www.brainyquote.com/quotes/keywords/wishes.html#BWCOKhfgf807vdsx.99

Facts are stubborn things; and whatever may be our wishes, our inclinations, or the dictates of our passions, they cannot alter the state of facts and evidence.
John Adams
Read more at http://www.brainyquote.com/quotes/keywords/wishes.html#BWCOKhfgf807vdsx.99

Facts are stubborn things; and whatever may be our wishes, our inclinations, or the dictates of our passions, they cannot alter the state of facts and evidence.
John Adams
Read more at http://www.brainyquote.com/quotes/keywords/wishes.html#BWCOKhfgf807vdsx.99

Facts are stubborn things; and whatever may be our wishes, our inclinations, or the dictates of our passions, they cannot alter the state of facts and evidence.
John Adams
Read more at http://www.brainyquote.com/quotes/keywords/wishes.html#BWCOKhfgf807vdsx.99

Strength, Love, and Courage

Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.-Lao Tzu

Another breakdown/meltdown today. I know I've talked about how alone I feel in this whole process and how my brother and sister in law are no where to be found despite the fact that they are only 30 minutes away. Now, this meltdown was for several reasons. My job is wearing me out I'm technically working 12 days in a row in a very stressful environment. I'm tired of only getting to see my boyfriend one or two days a week. Lastly, my mom has become sicker. She's now weighing less than she's ever weighed before. It's a struggle to try to get her to eat despite the fact that she is starving. All of this has lead to a horrible migraine that I haven't been able to shake. I am so thankful for my amazing boyfriend whose simple question of "what's wrong?" lead to me just breaking down and instead of telling me to get over it he just pulled me in closer, listened, and calmed me down. It's hard feeling helpless. It's hard seeing my mom so upset and I know she's tired of being sick. She put up an older picture of herself from before the accident and the SMAS started and to see how different she looks is unbelievable. I know she's sick of being sick, but I don't know how to help. I don't know how to make her better. You'd think having a nurse in the family would be a little more helpful, but is so distant. How can you be part of someone's family and so uncaring? 

I am so glad I have my boyfriend and close friends around. They are the ones that continue to give me the strength to keep going, to keep looking for answers, to continue being there for my mom. I continue to hope that answers will be found, that my mom will defeat this, and that I will have my healthy mom back again.

I'll be a runaway

I'll put the pedal to the metal as the sun goes down
Leave everybody sleepin' in this sleepy town tonight
At the break of day
I'll be a runaway-Love and Theft

That's how I feel the majority of the time. I know you can't run away from your problems, but wouldn't it seem to make things easier to just stop caring, pack up, and disappear?? There'd be a few things I'd take with me such as the boyfriend and the dog, but I'm sorry....I'm sick of the responsibilities. I'm sick of having the fear that I'm losing my mom. I'm sick of the stress and being only 26 and having all this weight on me when no one else is stepping in to help. How come I cant use work or school as an excuse not to help out? How come I'm the one working 6 days a week, coaching 3 days a week, with a meet on Saturdays, and I'm still the one taking her to the store, doing yard work, going with her to the dr, taking her to the airport??? I'm sorry. I know I'm whining. I know life can be worse. I just need someone to help...

As I Sit Here Waiting

Please bear with me as I am typing this on my phone. Today brings back so many memories of December and all the wonderful people I met that day my mom had surgery. Everyone was worried, but we found comfort in one another. We first explained why our loved one was there and conversations eventually turned into funny. stories and memories. Each time one of us got good news we celebrated and unfortunately not everyone received good news. But once again, those of us in he waiting room were there to support the other. I still wonder how everyone ended up and still hope that their recoveries have gone well. It's nice knowing that people, even strangers, are there to comfort you in a time of need. Thankfully, today, I have my dad here. I know he's just as worried, but at least I have family here. Sitting here watching my mom in pain is so difficult. I want to take the pain away, I want her to feel better, and hopefully one of these days that will happen.

Without Your Friends You Are Nothing

"My friends and family are my support system. They tell me what I need to hear, not what I want to hear and they are there for me in the good and bad times. Without them I have no idea where I would be and I know that their love for me is what's keeping my head above the water."
Kelly Clarkson

 I try not to keep most of my fears and concerns to myself, but there are some days when I need the support of my friends and boyfriend. I don't like to bother everyone because I know everyone is going through one thing or another. Thankfully today my coworker covered my butt so I could rush home to my mom. There are good days and bad days. Unfortunately the bad days seem to be worse and the past few days have been rough. Yesterday was Mother's Day and I wanted to take my mom out to dinner after attending an afternoon wedding. Mom became sick even before we left the house and as the event progressed she felt even worse. Then this morning I woke up and my mom had a migraine which overwhelmed her. Things got to the point where I was debating taking her to the ER. She was unable to drive herself to the doctor for a back appointment, but I was able to take her. I liked the doctor and for once someone seemed to really listen to her and the pain she is having. Because taking medicine orally can be a problem due to SMAS he prescribed a topical cream and she'll be going to therapy. Hopefully this will help with her pain. 

It's still a hard thing to handle because I can't make my mom better. The only thing I can do is just be there for her, support her, and help out in any way I can. I try to concentrate on one thing at a time and I think my mom is trying to do the same. It's almost like we have a checklist and once one thing is sort of under control we can move onto the next. Why is Mom sick? SMAS, next. Why does she still not feel well? Crohn's. Okay, lets run more tests. Oh look, we found osteoporosis. Check! So why does her back hurt so bad? Disk slightly forward and some degeneration. How is this fixed? Therapy? Okay! Pelvic pain? Surgery in a week and a half. Meanwhile, running through my head, the question "what's next?" arises.  The fear is still there that I'm losing my mom and I know I shouldn't feel that way. I'm worried about the upcoming surgery even though it's routine. I haven't even mentioned it to my best friend yet. Without my friends and boyfriend I would've already had a meltdown and they are keeping me somewhat grounded. My boyfriend distracts me, tells me jokes, etc. My friends tell me about their day and their problems. All of those things help me to forget, for a few minutes, about all of this. I know it could always be worse and I do see signs of improvement. My mom has managed to put some weight back on and doesn't look as scary thin and at times she really can eat and keep food down though the pain is still there. But again, thanks to my friends and amazing boyfriend for helping me keep my head above the water.

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.

The Day We've Been Waiting For

“We dream to give ourselves hope. To stop dreaming - well, that’s like saying you can never change your fate.” ― Amy Tan, The Hundred Secret Senses

I waited to post until today because this has been the day so many of us have waited for, the day my mom sees a doctor that has diagnosed and successfully treated a patient with SMA. It seems like all of our hope and answers were relying on this doctor and his diagnosis. Unfortunately I was not able to be with my mom for this appointment and at this second I am still a little in the dark and do not have all of the answers. I may never have the whole story of what happened in that office. My friends knew how stressed I've been all day and that I've been anxiously awaiting news. I had such high hopes...at this moment it feels like we will never have any answers. The doctor in Tampa stated he did not believe my mom had SMA Syndrome. I guess there wasn't enough evidence to support our previous diagnosis. What I want to know is why her SMA is at a 10 degree angle, shouldn't that be causing some of her pain, that supports the SMA Syndrome diagnosis, but because some symptoms were not present he has decided to rule it out. He wants to run more tests on her, but those wont be done until Nov 5 which means more time waiting, more time stressing, more weight that will be lost, more depression, and maybe even the desire to give up. This doctor thinks it might have something to do with the pancreas, but didn't explain further what the problem might be or why it is causing all this pain. 

I feel hopeless and upset that there is nothing I can do to help out my mom. At this point part of me wants to stop dreaming. My family is having such a hard time and this is just another blow to us after news of my mom's cousin. My mom is sick and no one can figure out what is wrong while my Aunt was given only a 15% chance of beating her cancers. How can you find hope when doctors are not providing answers or solutions?