chronic illnessfaith

Lunch With A Mentor

It has been setting on my Sharing Our Spoons goal list for the last two months but I finally got it scheduled and had lunch with my seminary adviser and mentor last week. God totally had a hand in the timing as it could have not come at a more perfect time.

Last week was hard. Extremely hard. Work was absolutely crazy. Pain was up. My anxiety was completely over the top. I cried many, many tears. The state that I was in when I left my office was pretty close to the bottom of the barrel.

As we sat at small table at the practically empty restaurant, it was as if she was able to read me completely and said, “Let it out.” And I did. All of it.

I cried over the amount of pain I have been in and the frustration of not being able to find a way to treat it. Feeling that the goal of “good enough” was not good enough. Being angry over how unfair it was for my husband and daughter to have to deal with the limitations chronic illness have created in my life. The anxiety that has invaded as a result of my surgery this summer that has seemed to impact just about every part of my life. The worry over what I will worry about next.

I also vented about how I felt work just sucked the life out of me. My job has been stressful the last week or two but it was more about working in general. Illness has left me with very little energy and at this point, I feel like all of my energy goes to work and then I have very little left over for family. I need insurance so right now I need to work (that is a whole other post). We talked about disability and my struggles to get to the point where I can accept mentally that it is an avenue that I need to consider. Physically, my body understands disability. Goodness knows my body is all for it. Mentally, however, my Type-A self struggles with the concept and accepting the fact that pursuing disability does not mean I am a failure or copping out. It means trying to do what is best for myself and my family.

Then we got to where I was spiritually. I didn’t know exactly how to put it into words but as I heard myself talk, I came out with the term “spiritually agoraphobic.” Agoraphobia is an abnormal fear of being in crowds, public places, or open areas. Pain keeps me pretty closed off physically quite a bit and with my increase in anxiety, I have feared that I would get to the point where my anxiety would begin to manifest as agoraphobia. As I shared these feelings, it dawned on me that it is how I have been feeling spiritually. Spiritually I have become terrified of being open or public. I don’t think I have become bitter with God about my illness but I do think I have become despondent and closed off. I do feel like the grip on hope has started to slip and that scares me and I think that is why I have had such a hard time writing lately. The mission of this blog is to encourage choosing hope and I feel like I haven’t been making that choice. I just have not been making a choice at all.

Getting all of this out on the table was so healing. Having someone listen and truly hear me was what I needed to fully recognize where I am at, especially spiritually. I feel like I am now able to accept and own some of these feelings and I feel like that is the first step in moving on and getting myself to a better place.

Moral of the story = having a mentor and “hope builder” is awesome! It is also a perk when said mentor wants to talk to you more about publishing some of your writing!

 

p.s. National Health Blog Post Month is kicking off November 1st with WeGo Health! Be sure to check it out & join in! Hopefully you’ll be seeing a lot of me this month 🙂

family

Our Disney on Ice Experience

It is no secret that I absolutely love Disney and love passing my love for Disney onto my daughter! Our visit to Disney World last year was absolutely magical and Abby still talks about it so when I found out that Disney on Ice was coming to our area, I immediately started shopping for tickets!

We had the opportunity to see Disney on Ice: Worlds of Fantasy this past weekend and had an amazing time! Abby was excited to get dressed up in one of her princess dresses and was very happy to join in the many other little girls that were in attendance spreading the love of glitter! I pity of the cleaning crew that has to get all of that up after four days of shows!

We ended up with seats just four rows up from the ice so we had a fantastic view!Abby’s face completely lit up when the characters took the ice which made the experience absolutely priceless! The Worlds of Fantasy show featured Cars, The Little Mermaid, Tinkerbell, and Toy Story!

These are some of my favorite shots:

Disney-On-Ice

Disney-on-Ice

Disney-On-Ice

 

The only thing that I did not consider, being a spoonie, was how sitting so close to the ice was going to affect my joint and fibromyalgia (oops!) but had I thought ahead, packing a blanket would have made a big difference and I will definitely know that for next time (there will most definitely be a next time!)

All in all, we had an amazing time and I would do it again in a heartbeat!

p.s. I was not asked to do this review at all. All expenses came from my pocket but I just wanted to share our wonderful experience! But hey, Disney, just in case you want me to check out another show, I’m all ears 🙂

chronic illness

SOS Community: Meet Betsy

Welcome to the first edition of Sharing Our Spoons Community! Every other week, A New Kind of Normal will host a new guest who will share a bit about his or her journey with chronic illness! It will not only be a great way to meet others in our community but also a great way to learn a thing or two!

It is my honor to introduce our first guest, Betsy! Betsy blogs over at Just a Pharmgirl so be sure to pay her a visit after reading her interview!

Tell us a little about yourself (just a short bio)

My name is Betsy Sammarco. My husband and I have 2 boys who are in college now. I’m a pharmacist and am trying remain in the work force in every way possible by working per-diem and teaching as a pharmacist, and working as an online assistant for my favorite crafting and vintage supply company, Jenni Bowlin Studio.

 

What is your diagnosis (or diagnoses)

I have Multiple Sclerosis or my “Lovely Life Challenge” as I like to call it.
How long did it take you did get diagnosed from the onset of symptoms to the official diagnosis?

I had vague symptoms in my knees for much of my adult life, but I attributed it to common “knee problems”. In 1998, more symptoms developed and I actually told my doctor I was concerned about having MS. He did not think this was a possibility and unfortunately no further tests were ordered. It’s interesting to this day, reading the conversation in my medical chart as the doctor documented it. I received my diagnosis is December 2008 after extreme exacerbations of my symptoms.

 

What do you consider the most important factors in finding the right doctor?

I think you need to get second and third opinions about treatment options. I have one doctor I use primarily, and visit another doctor at least once a year to get his opinion on my status. The second doctor is comfortable with playing the “second fiddle” for me. I want to make sure I have investigated all of my options. I’ll seek more opinions if I need to.

 

What has been the hardest thing about facing chronic illness?

Wondering what the future holds. Although nobody knows what their future holds, those with chronic illness know their worry carries a greater concern for them than those without illness. It takes a great deal of mental strength to push the worries behind to allow yourself to live a peaceful life. Because making it through the day, week, month, and year is an accomplishment to be proud of, I great every single one of my birthdays with a big “yipeee!”

 

What is something positive that happened as a result of your illness?

There have been a couple of things. Since I’m a pharmacist with MS, I’m in a position to help others as a professional with the disease. It has made me so happy to help others by helping them to understand their medications, explain the jargon, and give hope.

 

If you had to give one piece of advice to a newly diagnosed spoonie, what would it be?

Don’t keep yourself alienated. Get out even if you don’t feel like it. Surround yourself with positive people. Finding positive people who also share the challenge of living with a chronic illness is a double bonus.

Never give up hope.

 

Anything else you would like to share?

Never give up trying to do something you love. You may need to modify how you do it and do it differently, but try to keep doing the things that make you happy in some way.

I have loved to scrapbook and craft. MS has greatly affected the way I can do this. When my symptoms were more difficult to deal with, I looked to the computer as a creative tool. It was a different way of creating than what I did before, but allowed me to create in some way.

 

How can we follow you?

You can find me on my blog, Just a Pharmgirl, where I share little pieces of my life, especially my crafting, scrapbooking, and photography.

 

You can also find me on Facebook!

Thank you so much Betsy for sharing your story with us!

If you would be interested in being interviewed for Sharing Our Spoons community and sharing a part of your story, please send me an email! I would love to have you!