Jedi Mind Tricks

            A short post tonight.  What a day!  It started with PT this morning.  We did dry needling again which seems to be helping a little.  As a surprise, it turns out I can bend the needles with my mind!  No, seriously….  In the middle of the session, a spasm hit the leg she was working on.  The spasm was intense enough to bend the needle in my muscle!  She looked at me and said, “you bent the needle!”.  I just told her, “yes, imagine what that feels like within the body” …  After we had a good laugh over the whole thing, she was even more determined to get me past this flare and in a better place again.  If I hadn't been in a rather focused frame of mind, I would have taken a photo but, hindsight.  :) 

 

            After getting home, Mom, Sam, Ben (once he was home from work), and I cooked all afternoon.  We are regulars at Maggie Casey’s store (Shuttles, Spindles, and Skeins in Boulder, CO).  Tonight was her yearly Rock Day celebration and potluck.  So, of course, we had to bring a ton of food!  Tortilla Soup, Potato Soup, and Sticky Toffee Pudding.   Back in the olden days, Rock Day was the celebration of fiber workers returning to their jobs after the holidays.  These days, it’s just an excuse for fiber artists to get together, socialize, and eat another fun meal before trying to lose the holiday weight. 

A Productive Weekend

In the process!

              What a productive weekend!  I’ve been learning to sew sugar glider pouches.  It was smooth sailing once Mama showed me how to use the zipper foot.  One side was fairly easy to sew then the other side of the zipper kept getting stuck…  I couldn’t figure out what was going on because everything looked right.  Turns out, I hadn’t slid the foot over to the other side.  It was one of those moments that made me feel incredibly silly.  Oh well, everything turned out well.

First Pouch Done!

            This is an effort to eventually open an Etsy store.  Since I have to rely on rides at the moment, it would be terribly inconvenient for my family if I got a regular job.  So, I am getting creative!  My parents have been awesome about lending recommendations so, hopefully, I will have some income coming in soon.  On the up side, my semester is all sorted out.  I was able to arrange all the classes around the same time as my younger brother.  He has been sweet about me riding along and was insistent I not take a break from school.     

              The PT exercises are definitely not easy.  They have me doing what should be simple stuff but most certainly isn’t at the moment.  My next session is tomorrow so, hopefully, my very detailed record of what each day brought will help direct her in the right direction, so she can help even farther.  This has brought about hope.  It is a relief when you are trying to explain what is happening to your doctor and they can finish the explanation for you because they know exactly what is happening.  It is always disheartening when they have no clue what you are talking about.  Thankfully, this Physical Therapist not only seems to know what is happening but was even able to ask about certain symptoms I hadn’t mentioned yet. 

 

PT and Hope!

Twins Liv and Lil...  Sassy as can be but sweet. :)

           A day of hope and looking forward!  I had my first PT session today and with it came enthusiasm I haven’t see in a while.  My physical therapist has worked with solely neurological issues for 10 years and seemed very confident in my case.  She found some things she was happy with and others she is ready to start working on. 

           

We started with a general assessment to see what is working, what isn’t, and what is struggling to fire up appropriately.  From there, she wanted to try calming the ever-present spasticity and tightness, so we did some dry needling on my calves.  They are numb enough I didn’t feel a thing; however, I had an easier time standing up than I have in a while.  I’m assuming that’s a good sign.   From there, I was given loads of at-home exercises.

           

Lil decided she wanted to sleep curled up in my hand but,
with her little nose poking out. 

            After we got home, I did my first run through of all the exercises… Gracious, this is going to be a long road back to semi-normalcy but not one I will slack on.  I felt really good after it all and even got some stuff I needed done finished.  It was about then my muscles decided to sass back.  They decided I had done enough.  Thank goodness I live in a house with a Dad whole excels at the weightlifting part of CrossFit.  He lifted my 115lbs like it was nothing and helped me into my mom’s spare wheelchair to get around in for the evening.  I have to say, I haven’t been picked up since I was wee lass so that felt a little odd.

            As I sit here tonight, even with the minor tumble earlier, I have more hope than I have in months.   The next step is waiting to hear back on the ridiculous amount of bloodwork they took last month.  The specialist I saw thought a lot had been missed on the last run and decided to follow up on it all in greater detail.  I told my General Practitioner, whom I saw a week later, that I would be happy to send the results but she really shouldn’t take any more blood at that time…  She agreed.   Hopefully, it won’t take too long but, let’s be honest, have you ever been to a doctor’s office that moves quickly for anything?  I didn’t think so. 😊

This is a post I found on Instagram that rang so true.

Realizations and an Amazing Dinner

              In the midst of trial and tribulation, you truly learn who you can rely on.  There are the friends you always figure will stick by you no matter what but, when the chips fall, they disappear.  There are the friends you never thought would stay around and you are right.  Then there are the friends that stick by you through everything.  The good, the bad, and everything in between.  The friend who hears you took a tumble and writes you at 2am to make sure you are ok and haven’t lost faith.  Those are the friends you cherish because you can always count on them.

            

              Even family is unpredictable in these situations.  My immediate family is amazing and willing to do anything to help me through this.  I have two brothers who are always ready to jump in and cover for me if I can’t quite do something.  A Dada who would do anything to make sure I have what I need.  That includes confronting doctors who think I am “young and just looking for attention”.  Because numb extremities, twitching muscles, and burning sensations are the way I‘d choose to go for that…  A Mama who understands better than anyone what I am going through and is always ready to be a shoulder to cry on when the tears just won’t stay at bay.  Plus, because she has struggled with many of the same issues, she is a wealth of knowledge for dealing with it all.  Extended family, however, is less reliable and more cynical.

            

              I’m lucky to have such a support system and thank God every day for that.  I know, no matter what the future holds, I’m not alone.  That makes a world of difference and is a huge comfort.

            

Our setup so Mama can cook the crepes!
Regular stovetops aren't conducive to wheelchair users.
Besides, I had all the burners busy. :)

              

            Now, onto a lighter topic.  Tonight, we made a fantastic dinner.   Sweet and savory crepes.  For the savory, Chicken w/ Bacon filling for the guys and Spinach Ricotta Filling for Mama and I (we are both pescatarians for health reasons).  The sweet consisted of Ricotta Cream Cheese filling with a fresh Blueberry Compote over the top.  I made the fillings and topping with some help from my youngest brother on the chicken since I couldn’t taste it to flavor it.  My mama made the crepes using a recipe I have known my whole life.  It was a family effort that turned into a fantastic dinner!  Definitely worth the effort. 

A Rough Evening...

              Something only people with a chronic illness understands is how quickly things can flip.  You can have a decent day then, boom!  Everything comes crashing in around you.  That was today. 

As I mentioned previously, it has been a tough period, but I have refused to let it get the better of me.  Tonight, things went south.  I was in the kitchen washing dishes and, since I have been particularly weak lately, I was using a stool to lean on while cleaning to relieve some of the pressure on my legs.  Since my legs and feet are numb these days, I didn’t feel the chair go sliding out from under me until I was spread out on the kitchen floor, slightly stunned.

If you want to understand the epitome of frustration and discouragement, imagine being 25 years old and stuck on the kitchen floor, bawling, because you can’t lift yourself up.  Thankfully, I live in a house with 3 very strong guys who were right there in my hour of need. 

My dad and brothers are very compassionate and always ready to help.  Once I was up and on the couch, my mom was ready to be a shoulder to cry on because she understands what it feels like.  To go from independent to needy can be extremely upsetting. 

I’ve worked full-time for a long time.  I have been my mother’s caretaker for the last 11 years.  Helped raise my younger brothers and run a household.  All this while traveling the US for my dad’s job.  Because of all the places we have lived, I could milk a goat as easily as I could catch a subway in 4” stilettos.  For my age, I was pretty put together.  It can be really hard to go from that to needing help just to carry the laundry 10’ down the hallway.

This won’t get the best of me and we will find a way to make life better again.  I don’t expect an easy road to get there.  There are no magic pills.  I do, however, have to have faith that we will figure out what is missing and be able to complete my puzzle again. 

Happy New Year! Here Comes 2019!!!

Believe it or not, this lamb was 2 days old...  That poor Mama!

Happy New Year!!!  2018 is a thing of the past and 2019 is sure to be brighter!  As we take the time to reflect on the past year, we must remember the good, along with the bad.  I have to say, good and bad, I’m ready for the new year!  How about everyone else?  Are we all happy to ring in the new year and leave 2018 behind?

            

           It was a year full of revelations, struggles, and triumphs.  I was diagnosed with MS but decided to go back to school to be a psychiatrist anyway.  My legs started to make it extremely difficult to walk but I managed to complete my first semester with a 4.0 GPA despite that.  When life throws boulders at you, you dodge what you can, take a few hits, and recover.

            

My first pint in the UK.  No, I'm not drunk! 
The photo was just brilliantly timed. 

          The last few days have been particularly difficult.  My muscles have felt like they were on fire and my legs have decided to give out multiple times for no reason.  Just to add a new dynamic to the whole situation, the muscle spasms started in my abdomen.  For those who are lucky enough to never feel this, imagine the scene in an alien movie where something is crawling around in the poor human ready to burst its way out.  Yes, everything stayed in place but, boy, there were a few times I wasn’t so sure it would.

            

            Despite all this, I like to reflect on the good.  I have an amazing family who is always there for me.  I have friends that are there to celebrate the good days and let me vent on the bad days.  There are times I have questioned my faith but, in the end, I know God is there through it all.  He never gives us more than we can handle; though, it might feel that way at times. 

            

           So, as we bring in the new year, just know 2019 is bound to hold amazing things ahead.  Happy New Years, Everyone!!!

A great family photo from a few years ago!

Welcome to My Crazy Life

A Beautiful, Sunny, Windy Day in
Estes Park.

          The saying goes, “When life throws you lemons, make lemonade”.  When you are young, you hope for lemons because that means lemonade!  As an adult, that saying takes on a whole new meaning.  You try to dodge the lemons because who wants to deal with them!  Sometimes, however, you are given lemons no matter what you do so you must learn to make the best lemonade you can and keep smiling.

            I have had one of those years full of lemons, but I keep making lemonade and doing my best to stay on top of it all.  My name is Victoria.  I am a 25-year-old woman who was diagnosed with MS this last year.  I was told to cut back on stress so, of course, I decided to head back to school.  I’m now a full-time student trying to finish out my undergraduate so I can go to Medical School to be a Psychiatrist.  DO school, here I come!  

Is there a doubt we are mother and daughter?!
I obviously got my mama's looks. 

            The last month has been both festively fun and a struggle.  While trying to enjoy the normal holiday whoopla, a flair decided to impact some of the festivities.  I started having issues walking to the point it has been difficult walking from my bedroom to the living room.  Thank goodness for winter break and fortunate timing!  Because I have an amazing family, they hardly let me miss out.  My mother was impacted by disseminated Lyme almost 11 years ago and was put into a wheelchair because of it.  To keep me from missing out on our normal traditions, they had me use Mom’s spare electric chair, so I could still be apart.  I told my mama, I have always loved us matching but this was farther than I would have liked.  Oh well, like I said when life gives you lemons…   In my family, we have learned to turn them into far more than just lemonade.

            

Sibling Love!  We make a goofy trio.

               My home life is full of an amazing family.  We never leave someone behind or struggling.  My mama has faced more than anyone should but still smiled through the Cancer, Lyme, and years of uncertainty.  Not only did she come out on top but runs a non-profit (Healing Fibers Foundation) to help others find a means of therapeutic relaxation through fiber arts as she did.  My dada has always been there for each of us as we struggled through our health issues, even as he worked through some of his own.  He also now runs the Colorado division of the Sugar Glider Rescue.  Unfortunately, because he is too soft-hearted to turn away a wounded creature, we have 50 sugar gliders in our house.  My little brother, who is 2 years younger, struggles with Muscular Dystrophy.  Although it is tough, he goes to therapy every week to stay on top of it and is making the necessary adjustments to his diet.  Not only that, he is accelerating in his career as an IT Architect.   Then there is the youngest boy.  Seven years younger than me but bossy enough to sound like the oldest.  He is deaf in one ear due to a virus when he was young.  This hardly holds him back.  He is headed to Medical School as well and wants to be a surgeon. 

Father and Daughter.  Out of the three siblings,
I was the one to get Dada's personality.

            

                  So, while we have been through more than most families ever face, we didn’t let it take us down.  It made us closer as a family.  When you are facing these types of struggles, you have two options.  You can either withdraw from life and let it tear you apart.  Or, you can face it head on and take life by storm.  That doesn’t mean you don’t have bad days.  I have had those days where tears were ready to spill any minute and, sometimes, just wouldn’t refrain no matter how hard I tried.  Those are the times you cry until you can’t any longer, throw some water in your face, and move on while praying tomorrow is easier to handle. 

          

A family that sticks together through it all!

        This is my blog about life while facing this type of obstacle.  There are good times and bad times.  Times you think your life is too tough to handle and times life seems wonderful despite everything else happening.  You just keep smiling and move forward.