the blog goes dark

Have you noticed that this blog has been more sparsely posted than the past? Have you noticed the weeks rolling by with just Mo’s treatment updates and happy fridays? The blog’s gone dark – and here’s why.

Since Mo’s been home this summer I’ve handed over the reins of Myositis Colorado – he said he wanted to contribute more so I backed away from the laptop.

Up until April this blog had been 99.99% my idea, my project, my way to connect. I created all the pages, I gathered the resources, I wrote the posts, and I hunted YouTube and Pinterest for inspiring quotes and informative videos.

I’ve tried to involve myself with the KIT group – bringing in refreshments for the meetings, taking meeting notes to post the information here for those unable to attend, replying to most the emails that come in for support.

I’ve put my heart and soul into trying to raise funds and awareness for myositis. I’ve created webpages for our Picnic in the Park events, sought out donations, contacted media, started signups to get the group involved, I’ve run the auctions, and started a group fund and checking account. I put together the coin fundraiser, the t-shirt design contest, and I’m the one doing all the screen printing of those t-shirts.

Maybe you haven’t noticed what I’ve done – and maybe that’s my fault. When I sign most the emails it’s from “Mo & Nicole Bolger”. When you look at the “About Us” page on this blog I say that this is OUR pet project. I say WE a helluva a lot more than I say I.

Well I’m done.

This week I got two private messages on my Facebook page asking “How’s Mo doing?”. Nope, not “How are YOU doing?”.

For those that might care, I’ve been really shitty.

These past months have been very hard for me. I’ve been worried, angry,  resentful, exhausted, frustrated, annoyed, and generally pissed off. Very few people have checked in with both of us, even fewer have checked in with me. I’ve asked for help but those requests have for the most part fallen on deaf ears.

A while back Mo and I were talking about how this flare has been so different than what we had expected and in many ways how much harder it’s been to cope. We were talking about me not having an outlet (last time I had a job outside the house), and that we are a family not individuals anymore (we weren’t married nor did we have Conor back in 2007)

Mo: “Well yeah, this time you have two people to take care…”

Me: “No, I have three people to take care of. I STILL COUNT!”

I’m not looking for pity. I’m not even really looking for sympathy.

I don’t want anyone to think this is a cry for help. Because the truth is I just. don’t. care. anymore.

In fact I’m taking “Caregiver” off my job title. The hours are horrible and the pay is shit. Oh, and if you want to know how Mo is, private message him instead.

End Rant.

 

amazon smile

We buy a lot of things from Amazon.com – and if you are disabled at home you may too!

When I logged onto Amazon.com tonight, a pop-up came up about Amazon Smile – a way to have a percentage of your purchases benefit a charity of your choice. And LOOK! The Myositis Association came up in our charity search!

Screen Shot 2014-08-29 at 7.33.31 PMWe simply selected TMA as our charitable organization and now they’ll receive .5% of our purchases! You do have to make purchases through http://www.smile.amazon.com, just set a bookmark to that url and you’re all set! Sounds like an awesome program to me – it doesn’t cost us a thing and helps our myositis community!

To learn more about Amazon Smile click here. And sign up today!!!

our auction is live!

We’re trying something new to raise money for our group – our first online auction!!! Click here!
Screen Shot 2014-08-26 at 10.28.35 AM
Our online auction closes September 22nd at midnight – plenty of time to reach our $1000 goal!
You can also donate directly to our group fund through this auction!!! All major credit cards and PayPal accepted.
 
Bid early, bid often!
 
 

5 months of treatment, this is where I am

It has been quite a few weeks since I made a Blog entry, so it is about time I gave an update!

Well July and August has been a mixed bag. All my medical appointments are going well but my recovery is going slower than I had hoped.

My CPK for the start of August was 1,200. That is the lowest it has been since the start of January this year and a lot better than the July which was at 3,300.

The other good news I received this week is my CAT scan came back all clear. I had one done of my upper chest and organs on Tuesday. Dermatomyositis does have a much higher incidence of cancer than other forms of myositis and the general population. In addition I have been on Azathioprine (Imuran) for the last seven years which increases the risk. Finally I have some family history of cancer. As you can image I was relieved to hear the all clear.

I have been on high doses of Prednisone for a month now and I am in the window where I should know if the Rituxan infusions I did in May and June are working.

After about two weeks on Prednisone, I did get a good boost in strength and mobility. There was a Live Discussion on the TMA web-site recently on this drug. Click here to read that.

In addition to the positive attributes of the steroids, I am also experiencing its wonderful side-effects.

Rocket Moon

My moon-face has started in earnest. As have my insomnia, this despite taking all of it first thing in the morning. I am certainly getting more irritable as Nicole can attest to! I have lots of spells of fatigue but still cannot sleep for any length.

I saw my ophthalmologist this week. The retinal tears repairs to my right eye look good. My prescription has not changed since my last check-up and the pain I am experiencing in my eyes is just down to dry-eyes, which is not uncommon in a dry climate like Colorado. He did see the start of cataracts which I was aware of. Again I do have some family history here and something I will have to watch now that I am back on Prednisone which can exasperate cataracts.

However the last two weeks I feel I have plateaued again. It is hard to say as I am trying to be more active. Yesterday I had a bit of a scare going upstairs. My left quadriceps completely gave out and down goes Mo. It is still sore today and I am back using the quad-cane. Getting up from the ground is harder of late.

The other concern is that my Short Term Disability runs out the start of October. That is when I return to work. Although I have the ability to go on Long Term Disability through my employer, it is not something I want to do. My family would lose their medical insurance and would have to purchase the same benefit through COBRA which would add considerable expense to our family budget. Click here for information on the Consolidated Omnibus Budget Reconciliation Act (COBRA).

Finally a shout out to my great friend and work-mate Mike Gibson for wearing our newly designed Myositis Awareness shirt during the annual Gaithersburg Stress Test. Once a year Visa sends a team to an IBM facility in Gaithersburg, Maryland to stress-test various hardware and software computer configurations to ensure the Visa systems can handle expected volume for years to come. Last year I was part of the team. This year Mike ensured my fight with myositis is remembered.

Stress Test

Picnic in the Park 2014

We are so excited to announce the location of our 2014 Picnic in the Park! This year’s event will be held at the gorgeous (and I mean gorgeous) EB Rains Jr. Memorial Park in Northglenn, CO.

We have reserved the Tumbleweed Pavilion from 11:00AM – 2:00PM on Saturday September 20th. (September 21st is National Myositis Awareness Day!)

IMG_2870IMG_2872IMG_2871IMG_2873

For ALL the information about our event, check out our 2014 Picnic in the Park webpage! Click here to explore our sponsors, auction catalog, potluck sign-up, and park location/directions.

Don’t think you’ll be able to attend our event this year? Consider making a donation to our group or TMA – you can mail a check payable to Myositis Colorado (email for mailing address: myositisco@gmail.com) or make an online donation with your credit card to TMA, click here.