Sunday, November 24, 2013

Delicious Fresh Produce the Easy Way

One way that Fibromyalgia has changed my everyday life is the ability to grocery shop.  This is a task that I have never truly enjoyed and admittedly dread, but with what my body has been going through it is something I can no longer physically do on my own.  I prefer to go once every three to four weeks and stock up as a way to lessen the burden.

The only problem with this is getting everything to fit in the freezer and relying on canned or frozen produce after the first week and a half.  I am excited to share a solution that I discovered recently...Green Bean Delivery.  With this I can order my produce and some of the other weekly essentials online and have them delivered either weekly or biweekly.  I was most impressed to see that they carry the only gluten free bread that my PANDAS daughter loves to eat, Udi's white sandwich bread, along with eggs and soy milk.  We received our first delivery a few days ago and I was beyond pleased with the ease of the process and quality of the products.  I was inspired to share my delight with a  few quick snapshots....




Saturday, November 2, 2013

Sensory Sympathies and Fibromyalgia

Typically I share about my daughter's health issues, but today I thought I would let everyone in on what has been going on with me lately.  It started back in January of this year when I had a vicious attack of vertigo that lasted for about three days.  After that the vertigo was still there and was provoked every time I moved my head, but was at least calm while I was still.  This led to time spent with an ENT, Neurologist, 8 weeks of physical therapy, and a MRI...all of which determined I had something known as Vestibular Neuritis.  Basically this is inflammation of the nerve that sends messages to the brain from the balance organs in the inner ear.  What puzzled the doctors was why the nerve was not healing, allowing the brain to adjust to the new level of balance and let me move on with the rest of my life.  Normally this happens within a couple of months at the longest.  At this point I was a good six months in.

About two months ago I was visiting my family doctor, who had been keeping tabs on all of this and trying different medications in order to get me some relief.  She happened to catch me on an extra grumbly day.  I vented everything that had been bothering me, which ended up being much more than the vertigo once I laid it all out.  Some of these gripes included:
          *Achy flu type feeling throughout my body*  I would also have a burning sensation in my muscles when doing anything physical....like in my thighs from walking up the stairs.  I felt as if I had done 100 squats where as in reality I had only climbed 10 steps.
          *Tired all the time and easily exhausted*  Even by the most 'normal' of activities, like running the sweeper or going to the grocery.
          *Having trouble concentrating*  It was like I knew people were talking to me...I could see their lips moving and could hear that words were coming out.  I was even engaging them with head nods and eye contact but was having trouble processing what they were saying well enough to make a remotely intelligent reply.  Many times I would need to ask clarifying questions about things that should have been obvious.  This has been one of the most challenging things for me at work when speaking with colleagues and customers.  I feel like I must look like a total idiot and fear loosing the respect from those I have worked so hard to earn it from.

Once my doctor took all this in she said, "Well, that sounds like Fibromyalgia.  Does anyone else in your family have a history with this that you are aware of?"  Actually yes doc.  Both my father and sister are dealing with Fibromyalgia.  How could I have not made the connection sooner?  One thing I was not aware of is the interference this creates with the nerves - resulting in the aches and pains, but also could very well be the problem with my vestibular nerve.  A few weeks on a fibro med and my vertigo has quieted tremendously.

One thing I have encountered with this that brings me back to PANDAS is the extra sensitivity to touch.  This is something my daughter has struggled with for years.  So many times she told me her jeans 'hurt' and as compassionate as I was I never could really understand.  It was a couple of weekends ago when I was laying on the bed watching TV and just could not get comfortable.  The seam on my jeans was pushing up against my knee and I honestly said, "This *hurts*!!"  I am pleased to say I have found something  good thing in all of this...genuine empathy.

I still need to see a specialist for an official diagnosis, but at least with this medication I feel like I have some of my life back...so hopefully you will be seeing more posts from me!

Friday, September 27, 2013

PANDAS Eyes

One thing that has been very reliable in detecting an oncoming PANDAS flare up in my daughter is simply the look in her eyes.  I tried to capture this 'look' in a photograph since I have been looking for a way to best describe this to her pediatrician and other parents.  It was when I was cropping the image that I realized just how similar her "PANDAS" eyes are to those of a real panda bear.  Droopy, dark circles, and abnormal pupils.  Both sets of eyes make me want to give them each a big Mama Bear hug.



Panda image obtained from fellow blogger....http://chengxiao123456.blog.com/page/4/

Sunday, July 14, 2013

Saturday, July 13, 2013

The Sound of Worries


In a previous post I shared that my PANDAS daughter was starting a new hobby and creating videos about her life, etc.  Here I have posted a video of her sharing a song she wrote about her 'worries'.  Along with 46% of fellow PANDAS children she suffers from severe separation anxiety (http://pandasnetwork.org/research/parent-research/fact-sheet/) and has expressed in this song how she feels when she tries to call me and I cannot answer my phone.




Saturday, June 22, 2013

Supporter or Enabler?

As parents one thing we are still learning about PANDAS is how much control to give our daughter over her obsessions and compulsions.  We have gone back and forth on this and quickly realized there is a delicate line between being supportive and enabling.

From the beginning our daughter has obsessed with perfecting her routines, most specifically around getting ready in the morning.  She will agonize over making potential changes no matter how small.  Everything will be fine tuned and seem to be working well for awhile, but then the obsession creeps back in causing her to doubt it all.

Over the last several weeks she has been wanting to create videos of herself, somewhat like a diary, but has had a hard time coming up with ideas of what to talk about.  As a way of brainstorming she went to YouTube to see what videos other girls her age had created.  She stumbled across a series of videos where girls explain their morning routines.  This of course greatly inspired her to once again tweak her own, but before making any decisions she wanted to watch more (and more, and more) videos.

I have been torn over whether or not to allow her to continue this 'research'.  On one hand I think it is good that she sees that everyone's routines are different, and the girls do tend to share it cannot always be the same everyday and stress flexibility in them.  However, I am also worried about the obvious...that the obsessive part of her mind will not hear any of those points at all; focusing solely on her own perfection.

Any thoughts....?

Friday, April 19, 2013

One Good Friend

I have always told my daughter that all she needs is one good friend to survive school with minimal damage.  Making new friends in the fifth grade is not effortless for most kids, but for a PANDAS child it can be even more challenging.  When she was in elementary school Dora made 'surface' friends, as I like to think of them, who she could play with contentedly without either really needing to know much about the other.  As she gets older and her roots of individuality stretch deeper, her friendships too are becoming more personal.

There were a few of the surface friends that avoided her after encountering the PANDAS layer.  Either they did not care to understand her situation or maybe they even feared it.  One thing we did learn along the way was to not let a friend learn about PANDAS during an episode...it is much better to discuss it before that happens.  For example, Dora had a friend spend the night for the first time last year.  Of course she was super excited, but I was afraid of how the changes in her routine might cause her to react.  We discussed how she would handle any anxiety that would arise and since this was a friend that she had known for awhile, I was feeling adequately prepared.

She made it through skipping the nighttime rituals without concern; the next morning however was a different story.  Her normal routine was fully derailed which was too much for her to manage.  She ended up with a full blown tantrum that lasted close to an hour while her friend watched in uncomfortable silence.  It was so hard for me to know what to do....I felt deeply for both of them.  Slowly this girl became less and less of a friend to the point where now the two of them barely speak at all.

It took a few long months but thankfully Dora made a new friend this school year who has stayed over several times now.  The first time she was at our house we discussed PANDAS and how it can cause Dora to behave differently.  It was not until last weekend that she witnessed this first hand.  The two girls were using some paint in Dora's room to work on a project together and a few drops ended up on the carpet throwing  her OCD out of control.  I heard the commotion, quickly went to investigate and found Dora on the floor in the bathroom sobbing and scratching deeply into the skin on her legs.  Her friend helped me clean up the droplets, work to calm Dora down, and went on the rest of the day as if nothing had happened.

Relationships are always a risk at any age, and will come and go throughout our lifetimes.  So even though this friend may be in our lives for only a year or two, depending on which direction each girl goes, I will always be forever grateful that Dora had one good friend during this challenging time in her life.

Saturday, April 13, 2013

Springtime Struggles

After having a daily meltdown every morning for the last two years about what to wear (specifically what would be comfortable enough to wear), my PANDAS daughter made a serious break through over the winter.  She had been wearing clothes up to three or four sizes too big in order to keep the material from touching her skin as much as possible.  Not to mention that anything suitable for her to wear would need to be soaked in fabric softener and washed multiple times.

Unfortunately what gave her the courage to push the envelope was being teased by classmates about her baggy wardrobe.  I clearly remember the day when we were out shopping and she asked to try on some jeans.  Having been here many times before I expected the reject pile to be the only pile she ended up with, but this time it was different.  She actually found some jeans, off the rack in the GIRLS department, and was willing to give them a try.  I was dumbfounded and scurried to the checkout without asking questions or inspecting the price tag.  From that day on she continued to push herself a smidgen here and there - enough to end the winter with a modest collection of appropriately sized attire.

Here in Ohio unpredictable weather is, well....predictable.  Going from winter to spring has been a major setback leading back to the days of sunrise hysterics.  The ups and downs in temperature has become a new fixation for her PANDAS induced OCD.  Will she be too hot or too cold?  Should she wear carpis, jeans, or shorts....long sleeves or short sleeves?  What about a jacket?  These questions come at me over and over (and over and over) again all to be relived the next morning (and the next, and the one after that).

Springtime is one where most of us savor the balance of pleasantly cool and warm days.  When trying to point out this delicacy to my dear daughter I only receive stares filled with anxiety and dread.  My hope is for her to have a summer like this winter (or better!), without losing all progress made....and for her to have an autumn where she can embrace the joy of seasonal variety.