Friday, January 11, 2019

The Storm Before the Calm

              Today was a good day in the wake of a rough night.  Last night, I got out of bed at about 3am to use the ladies’ room when my thigh decided to spasm and send me sprawled out on the floor.  Because it continued to spasm, I couldn’t even get back up.  My phone was in my bedroom but, thankfully, my parents had gotten me a Samsung smartwatch for Christmas.  The watch has an SOS on it, so I was able to ask for help.  My brother got the message and came to my rescue.  He picked me up and got me in my chair then let me bawl all over him as I cried my eyes out, all the while rubbing my back and telling me everything would be ok.  He really is a sweetheart.

            After that, I got a whole 2 hours of sleep…  In the morning, my family headed to the doctor’s office for my appointment.  We have all always been very involved with each other’s medical treatments.  No one has to work through health issues alone in my family.  We all piled in the appointment room, guys included since it was just test results and not an examination.  It turns out that I am very deficient in some very important things, on top of being Celiac.  They believe my condition is a layering effect that led to the auto-immune.  My diagnosis sheet is starting to fill out and look like a medical textbook.  This time, however, we are hopeful.  They gave me an IV Infusion of some essentials to get me started.  I have been going since 2:30pm when they gave it to me and I still have energy!   I haven’t felt this good in months.  Even my parents mentioned there was a pep to my voice they haven’t heard in a while.

            It’s now 11pm and I have started to wane.  However, the hope is still present.  With hard work, a good attitude, and perseverance, there are results in sight.  It’ll be a long journey back but, just like with PT, I’ll push through with a prayer. 

Oh, the nostalgia!  16 years old in rural (yes, rural) NJ, after High Tea looking at
a friend's new rifle.     


Wednesday, January 9, 2019

Healing Fiber Foundation

              Tonight, I would like to talk about something near and dear to my family.  Years ago, my mama founded a non-profit called Healing Fibers Foundation.  The goal of this organization is to help people who deal with chronic illness find a therapeutic respite in fiber arts.  This includes caretakers since we know all too well the stresses and struggles involved in caring for someone with disabilities or illnesses.
            When my mama became ill years ago, she rediscovered knitting as a way of keeping her mind off the pain and struggles she was facing.  From there, it expanded to crocheting, weaving, spinning, and just about any other fiber related art she could find.  It kept her hands, not only busy but dexterous.  The patterns were engaging and kept her mind sharp.  The spinning wheel was used as a form of exercise to help reduce the tightness in her legs.  Fiber arts have played a huge part in keeping her sane during the last 11 years while she faced incredibly challenging physical issues and fought to return to functional health.  

Bobbins of Silk/Yak singles ready to be plied.
            Realizing how helpful it was for her, Mama wanted to help others who face the daily challenges of chronic illness find their way to fiber arts.  She has now been published in Spin-In (an international magazine through Interweave), runs a Facebook group, developed kits (currently offering knitting, spinning, and crochet) to help teach and get people started,
and has a group of faithful followers who are always welcoming to new people.  This gives people a place to complain and talk about the challenges they face without judgement or the ever-present questions and recommendations that everyone seems to want to pass along.  It’s a place where people share their triumphs, in both health and crafts. 

            If you are looking for a place that is accepting and understanding, this is a great resource.  

Kits ready to go!

Tuesday, January 8, 2019

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. 

Sunday, January 6, 2019

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. 


Thursday, January 3, 2019

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.

Wednesday, January 2, 2019

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.