The Tide Rolls Again

It has been months since I have been here, feeling very lost the last several months since Sam's passing. I felt so pulled to her today and by the thoughts of others with this disease that I needed to check in. Since Sam passed away, most of us have found, or attempted to find other outlets with our time that was so use to being filled with Sam's needs and friendship. I poured myself into school, completing a two year associates in just three semesters, never have taken a break from school. I have this burning desire to get done and get out there and start sharing our knowledge with other people and hopefully have the opportunity to be the nurse that helps someone else with this rare disease to see through in comfort to the end. I so miss Sam still, I know I always will, but today has been particularly hard.

It is the time of year that my plants will have to be brought in, some to be taken completely down and seeded or bulbs set aside for next year. This is a particularly hard time because alot of my plants were from Sam, the pots they rest in, they too were hers. Since her remains were taken to Florida, where she is from, there is no place here to physically go to to talk to her, so my porch and my flower pot garden was my connection to her. Now I am uncertain where my peace will come from for the winter. I know she is all around us, I know she is always in our hearts, but for some reason I just need something physical to feel she is still with me. Something I can touch, something that keeps my thoughts grounded.

To add to this time, Sam's daughter finally went for her genetic testing. We know that there is no way to know if Shy Dragers (MSA) is hereditary at this time, but there were other underlying syndromes that started Sam's journey down the MSA road. One of the primary ones was Antiphospholipid Syndrome (Hughes Syndrome). There is some debate as to if the Warfrin used in the treatment of this blood antibody disease could be linked to MSA. Long story short, Jasmine has come back positive with having Hughes Syndrome. Sam's beautiful, strong, ambitious daughter....could it be possible that lightening could strike so tragically, twice in one family? Needless to say, the fear of the unknown is playing so hard in our minds today. Thank goodness, Sam's specialist, the one that we can find to know the most about MSA, happens to be the one that Jazzy's doctor has referred her to. Now we play the waiting game, for time to speak to him of what is to come or what could possibly be. I feel that a monster needs two legs to stand on, right now this one only has one, we can knock him over! Time again to grab the bull by the horns and jump off that cliff...I know that bull will hit the ground first because he weighs more and he will break our fall.

I hope that the rest of you are all well. I think I am ready to come back now and share more of the journey as I learn more from you all as well as put more answers together for ourselves to be able to share with you. God bless all, hope you all have a wonderful night!

-Kris

Farewell My Friend, Hello My Guardian Angel

It has been three weeks almost since writing on our blog.  The last two weeks have been very hard.  We all knew Sam didn't bounce back after the last hospital stay last month.  Tuesday, just four days away, we were to go to the zoo.  A much anticipated and well planned trip we were all to take.  Instead, today, as the family arrived for the trip....we lost her.  Our beautiful ray of sunshine is gone.  In the place of warmth, we have gained a twinkle of light in the sky to continue our own life journeys.  No more pain, no more suffering.  She went peacefully, without pain today at 3:45 as she drew her last breath.  We will be back soon as we have much to tell.  For now, we will plan our lives according to how her wishes were.  By our sides now is our new guardian angel.  Farewell my beautiful Sammy.  Gone now, in peace, but will never be forgotten.  I love you!

From The Outside In

This last two weeks seems to have taken on a whole new face in the caregiver lives of Sam.  This blog was to be about Sam and her disease but we seem to be at a point that writing to this blog about us is a therapy that we get so little of.  I am certain, as always, that this spell will pass as we yank ourselves up again.  Bare with us as we give a view from our side looking in.  It may just be the added stresses of the fact three out of four of us are also college students and are in our finals week for this semester.  Maybe we too are just as overwhelmed as Sam is.  The purpose of this blog was to enlighten, in frankness, all aspects of the world of Shy-Drager, MSA.  This is the other side.

This is a darker time in our care of Sam, feeling like we are being bombarded with life.  Our view is clouded with all the new developments and new aspects of this disease we are seeing.  We are at a point that we are beginning to question ourselves and our motives.  We are here to assist Sam, to help her through her life as normal as can be in light of the situation and all this disease brings.  I am not certain when this all started but it seems it began with this last hospital stay.  We are tired, yet we feel guilty for being tired.  We feel guilty that we are full of life and mobility and it is Sam that is dealt this terrible blow, not us.  So why do we feel so out of sorts?  Is it the light we so enjoyed in Sam's eyes has began to fade?  Is it just that we are no longer just a companion, daughter, son, husband but officially full blown care-givers that sometimes has to be firm and fully medically educated on the disease?  Is it the darkness that we see more and more often is beginning to blind our vision of the sun ever shining again?  It is so hard to say what it might be, but we are there, we are depressed and feeling guilty and at a storm point with our emotions.  Like we have said before, our prayers changed one day.  The day that we knew there was no return from this horrible monster that has taken the life out of our friend, mother and wife....the day we pray for mercy instead of hope. 

No words can describe to anyone else looking into our world how bad it feels as a normal human to watch something so traumatic happening in a dearly loved ones life when there is no hope.  We as humans live for hope, hope of another day, hope of a child's laughter, hope of dreams.  Without hope, we simply fail to dream or see the light again.  We know it is not fair to feel the way we do, that our focus should be on Sam and making things good for her.  No matter that fact, we do feel just that, hopeless and alone.  In this all, there truly is just three of us, the caregivers, as one really is clueless and is there just to make sure she doesn't fall or get hurt.  The other three of us live her life, have intertwined her life so deeply into ours that we no longer can tell where her life and illness ends and our lives and wellness starts.  This all may sound horrible to those that don't understand or who have never been there but it isn't horrible really.  Sam starts to feel that she is a burden to us, that is not what we intend nor what we are saying, she is very far from a burden, she is our love.  We have just become tired and weary of it all and we are having a difficult time encouraging her when we are loosing our own courage.  We wouldn't give up this time with Sam for the world.  It is our own thoughts and feelings of helplessness that is our burden.  Our own feeling of inadequacy after this last year.  Where our efforts only see decline.  This disease affects so many more than the patient, although the patient gets the worse end of it, it does affect us.  It goes against all natures of us human in survival modes. 

As the care-givers fight our own fight or flight emotions, our fights begin to seem to be futile.  We will never take flight without Sam, that is not who we are.  Just our battles are becoming overwhelming.  From the outside looking in, the glass is becoming clouded and covered with our tears that fall like rain.  Sam said it best when she said sometimes we cry in the shower to wash away the pain where no one can hear.  So we emerge, with smiling faces, like a mask to guard our true dark currents that flow beneath.





Just Another Dirt Pile

Today has been an interesting day. I often wonder though, where does the day go? My days with Sam seem to be getting shorter and shorter yet I know we are spending the same amount of time together. Maybe because I do spend so much time with her I tend to not notice as much the gentle changes, the slight differences in our routines or of her decline. It is taking longer to do normal things that most of us take for granted; like getting dressed, combing our hair or brushing our teeth. I had not been with Sam since Tuesday, and I had noticed some differences in her body language as well as her cognitive functions but not as bad as today. The leaning left is more drastic, her head is rolling allot and conversations at times are repeated several times during the day. So often I can not understand her completely. Three days ago or even last week feels like last night to her. Sam says she feels like she has been beaten with a baseball bat then given eight quaaludes. To be honest, that reference is sort of what I see looking into her world too. I know she can not put into words exactly how she feels, no matter how hard she tries because there is no way that we can relate or understand as we have never been there ourselves.

So I worry. I know Sam and I have an agreement not to worry and agree that it is nothing but a thing and something that will only get worse. I know we are over the shock of it all, but do we truly ever get over debating the end? Sam and I spoke very candidly about the transformations today, like it was a normal every day talk that everyone has. I found it sort of odd and disconcerting that we have got to the point that we sort of laugh about it all. Does laughter become our defense to keep from sharing tears with each other anymore? Have we come to a stage that one feels that we have to protect the other? I have very mixed emotions about this at the time being. I think I am feeling very discombobulated and alone today with all these odd feelings.

I know Sam will probably read this as will Jasmine and I should not be saying these things for their sake. Maybe, in the make of it all, as I have always been the coordinator and sort of the unspoken alpha of this pack, I have finally reached a brief moment that I feel I am loosing the battle with myself as to feeling helpless. I have educated myself so well with this disease and tried to be the rock that this family needs and I feel like erosion from the elements have hit today. In the effects of the disease that I have seen in Sam the last week, no amount of education has prepared me for, I finally no longer have an answer for these happenings. In the past it seems like we have been able to make it somewhat better and adjust accordingly. Today though, I feel so helpless and feel that I am letting her down.

I think often times, the caregivers forget about themselves. I have been advised to be careful, to not let myself get too worn down or not to stop living my life in the process but I must have done so without realizing it. I would not change it for the world though because Sam is such a large part of my life and my world as well as Jasmine. They are just an extension of my family. I don't seem to be able to remember a time when I didn't have them in my life. Quite possibly that is the issue. As the outside caregivers so often do, we forget about us, we are so worried about making sure the patient and the family make it through their initial anger, fears and grief that we never take the time ourselves to go through those processes. This last week or so I have been angry at myself and others. I am the type of person that loves other people but I can't seem to tolerate their ignorance and lack of respect for people that obviously have a disease. I just want to go to a mountain top so high and tell the world to hush a minute and listen....to tell them "Listen all those out there, your lives may seem bad but did you know there is this disease, a disease so rare that they have no known cause so they can not find a cure yet. Did you all know there is no other disease that is so painful and debilitating and so long in it's process of death? Have you all no feelings? Have you all no compassion or mercy?" Why can't we get the word out there so easily as this? I am so angry right now at how unfair it just all seems to be. Maybe, just maybe the time has come that it is my turn to grieve.

Just another dirt pile, maybe. A house of crazy we do build, but pretty soon I think we will have to work on the mansion itself.

Yippee, Yippee, Yippee!!

Yeah, we are going to the zoo!  It is taking a great deal of planning, as all our endeavors do, to put together the next item on that bucket list of Sam's.  Sam has never been to a large zoo, as I have spoke of before.  Well, we are marking our calenders!  May 15th is the target day.  There will be Sam's mom and one of her sisters coming from Florida to share this time, as well as a niece and great-nephew from Tennessee, her grandson from Missouri, her daughter Jazzy and her fiance' Matt, her son Derrick, myself and two of my teens, and yes, even our hard working other halves will be joining us!  We will be going to the Cincinnati Zoo.  Outings like this take allot of planning for MSA patients.  MSA is typical with the patient not being able to remain hydrated so well, they can not regulate their body temperatures and being on the go tends to drop their blood pressure.  We will have to pack things like a cooler for liquids to keep on demand (instead of standing in long lines) and to do this we must call ahead and obtain permission as most of these type of places will not allow outside food or beverages.  Blood pressure cuff will be included to monitor the pressures as we always do, every few hours.  We will take a week's worth of medications because you have to be prepared in case something does happen.  We will have to have preferences for Sam with the bathrooms and make sure we locate all rest areas along the trails to get her cool.  My daughter said she is going to make sure we have portable fans...lol.  An umbrella would be good to go on her chair, but Sam refuses, she says she doesn't like to draw attention to herself.  Wow, I never thought I would hear that come out of Sam's mouth!  Sam is a go getting rock and roller that loves being different.  We may have to revisit this idea though as some of the medications an MSA takes to treat the symptoms make them sensitive to the sun and will burn very easily.  MSA patients usually can't feel when they are burning either, we will have to watch this closely.  This will be a two hour drive from where we live to take this trip.  While it doesn't seem long to most, it is long for Sam.  We will cope with muscle cramps and bathroom breaks along the way.  A trip like this is of huge magnitude and is a once in a life time ordeal for us all to be in such a group of family and friends.  What a great day it will be for us all.  We will make sure to take the cameras as I am sure we will want to share our day with you all! 

Like a bunch of kids....Yippee, Yippee, Yippee...we are going to the zoo!

The Bucket List

As we have mentioned before, we have a bucket list.  It is a list of reasonable (mostly) things that Sam would still like to do as she knows the end is eminent.  There is allot of mixed emotions concerning a bucket list.  Some think that having a bucket list limits your possibilities of how your day will be, that it hampers spontaneity.  I personally think that a bucket list is like a road map, it shows where I am going and what direction I need to take to get there.  If I see something special along the way then good, yet another thing that I have learned or seen.  So such is with Sam, a list of things she would like to see or do.  I think a bucket list is great for a person with a terminal illness, it is an inspiration of goals to look forward to.  The list is a way to occupy the mind to not dwell on the daily aches, pains and challenges so much.  It seems when we have a goal to look forward to it gives Sam a reason to fight on a day to day basis, a reason to be more careful in her movements as to not hurt herself or us.  A common goal that we all can look forward to even in some of those darkest hours.  The excitement that builds up to the day that we do have to plan for intensely is like no other motivator.  A bucket list will lead our lives with Sam, goals and rainbows to look forward to in the days of clouds and rain.  Do you have a bucket list?

Physical Therapy

It has been a couple of days since I have been here.  I apologize, school is taking up allot of time as we close down another semester.  I have been deep in thought through the time of school work and my daily life this week.  My thoughts have been centered around physical therapy for Sam.  Since not being as sick from this last UTI, as she is on the mend, we are seeing some large improvements on her strength.  Sam doesn't seem to need quiet as much assistance in her daily movements as she did a few weeks ago.  I personally think this is from the physical therapy starting back up but, I do also see how badly she hurts afterwards.  In MSA and other movement disorders, the muscles begin to get rigid and atrophy causing movement to be stiff and painful.  I know physical therapy has to be, but there does seem to me that there has to be another answer.  I have been thinking about water therapy, take the weight off of her joints while being able to move with the light resistance of the water to work against her just enough to maybe loosen and strengthen the muscles and joints.  I too have been wanting to do something like this as I have started aging (should I say my body has, my mind refuses to admit it).  My joints hurt and I am mobile...so, I think this weeks challenge will be to possibly go to the local YMCA with Sam and see what the cost is and good times that might work.  Maybe there is a water aerobics beginner class that we can hang out in the back line and do a lighter version of.  We will have to keep you posted.  Next up though is follow up with a pain management center on Tuesday and again with the neurologist on Wednesday.  We are looking forward to seeing about other options.

Meet The real Kris

Kris has been my best friend for almost 12 years. When I first moved to KY she was one of the first people I met. I was outside and she came out of her house madder than fire at her children. The first thought that came to my mind was "she sure would make a good drill sergeant".
Well, let me tell you, when you are fighting for your life, that's who you want on your side!
While my head was still reeling with the question of just "what is MSA and what does that mean?" Kris had already spent countless hours researching it and learning how she could help. She has created all kinds of medical charts ( blood pressure, weight, food and liquid intake,and a medicine chart to put all  medicine charts to shame). Medicine name (generic and common) dosage and description of pill. When we go to the Dr.'s we take it all with us in a binder. The Dr.'s expect to see it. It makes their job easier. Oh sure, they ask me how I'm doing but, then turn to Kris and ask what can we do?  Most Dr.'s don't even know what MSA is let alone treat it. I think they are jealous of her knowledge. I'm just glad she's on my side!
She has been with me through it all. The anger, the wanting to give up, the pain, wiped my brow, even lets me cry when I want to.
It has to be hard watching someone you care for slip away knowing you really have no control. I know because I watch them watching me. So, we've come to a quite understanding. We discuss all aspects of my wants and needs, my final wishes and how I would like things to be handled. And then.........We laugh, and joke, and cut up. We find the lighter side to whatever comes our way. Most of all we cherish the time we do have and snub our noses at everything else.
If ever you have the opportunity to meet or talk to Kris, tell her it's not nice to push people into bushes.

What an Awesome Day!

As I sit in my living room, working on school work, I get a text from Sam's daughter Jasmine.  We are so excited about taking the time to document our fun as well as information to share with our new online support group.  A tribute to Sam, a scrap book for Jasmine, their families and I.  This blog means more to each of us than the other could have ever imagined.  Hang with us as we transform our lives onto this blog as we have added Sam as a co-author today and will be adding her daughter Jazzy in the next couple of weeks.  Buckle up all, this is going to be a long ride because none of us give up easily!  Hope everyone is having a wonderful day.  Sam and I will be spending the day together tomorrow and we hope to bring to you our group pictures and fun stories.  Hope to have an update on the new appointments soon.  Take care and God bless that we all woke up today!

A Prayer Today

I heard you say today, that you frequently pray.

You say you pray every night to not wake up the next day.

I understand your prayer, your plea with God;

As your daily struggles grow great and broad.

With heavy heart and a burden so great,

You tire of the pain and the pills you hate.

I heard you say today, that you frequently pray.

I too dropped to my knees for prayer this day.

I pray for strength, your soul to keep;

For one more day to revel the love you reap.

I thank him for his will for you to carry on

For I know in your heart you are not ready to be gone.

I heard you say today, that you frequently pray.

Pray not for an end, but for Lord’s mercy should you wake up today.

                                                                                -Kristianna