So much has been going on the past few weeks that we've hardly had a chance to catch up on some Zzz's let alone blog about it. The collage I posted is just a sneak peak at what we've been up to. We have had some great times with family and friends and a few cases of the 'oh no i hope i'not getting sick - ahhh choo!'
In the upcoming days we will have posts on the following:
While it appears to be a dream package - a lot of hard work, help & support was put forth by our family and friends and we couldn't have done it without them! Eric's parents watched our two dogs while we were away on our honeymoon and we can't thank them enough for that! They even posted pics of our pups to cure our separation anxiety! Anyone who knows us well, knows that our dogs ARE our kids.
I give a huge dose of credit to my husband Eric for fighting through all the pain that Still's Disease causes him every day. A picture may be worth a thousand words, but it's worth 2,000 more that you can't see seconds after the photo is taken. Social media has allowed us to connect with others and share our story so others don't have to feel alone. But times like this where we can catch a glimpse of 'normal' life again can easily be misconstrued to those who don't interact with us on a regular basis.
It takes Eric's body anywhere from 30 minutes or more to get un-stiff in the morning. Sometimes it takes hours or lingers for days. While Humira, Methotraxate and steroids allow Eric to move around and stay alive, one of the major downfalls is the immense pressure to have reduced sun exposure. So0o0o0o there is a lot of prep time for pretty much anything we do now. A typical rundown of any trips or outdoor activities we do consist of making sure Eric has all of his medications with him for the duration(sounds easier than it is), the least amount of sun exposure possible, reducing any risk of insect bites or exposure to bacteria, wearing masks around people who cough or sneeze, ability to rest when weary, and the understanding that sometimes the day just has to end early no matter how much it sucks and you want to keep going.
We knew going into these events that it would take a lot, and I think it took more than we expected. However, I don't know that we could have made it without the help of others. We are eternally grateful for their efforts in giving us the chance to make the memories that HLH almost took from us just 4 months after we wed.
We thank you for your continued support and hope you get to take a moment to enjoy the fall. Life is short. Yesterday is gone & Tomorrow is never promised. Go make time for your loved ones today!
End of Summer is Near
The end of summer doesn't really hit me the same way that it did when I had to go back to school or the way I think it would if we had school aged kids. I'm not so sure that'd I'd ever jump into the hype though. So for me the end of summer is simply the beginning of the end of warm weather. Work continues and life keeps movin on. We had a great time enjoying the weather this weekend. Eric made some great dinners too!
Lately we've been attempting to get out on our bikes more to explore the local countryside whenever the weather is less than sweltering. On Saturday I woke up early and said to myself, just get up and go now! I knew I just needed to rip that band aid off and get this day going..So I wake up Eric, get the dogs outside, we get our bikes ready, grab our waters and the tennis rackets and we're off! The 'end of summer' cool breeze even made me think I may need to put cotton into ears from the wind! Smooth sailing at a comfortable 8-10mph and hills at 17mph- it was a great ride there......only to find that after all the times we've been to the township park and it likes like the barren dessert or a zombie apocalypse with no one person in sight - both tennis courts were taken! We waited a few to realize this very fit family of 5 was not going to be leaving soon. So we headed back home for what felt like the longest 2.5 miles ride back. What a bummer! It's lookin like the next few days are going to be 90* and steamy!
The rest of the weekend was filled with Landry an other wifely household duties. I was able to get some cool new graphics made for the site and Facebook page and tie up some loose ends with the Histiocytosis Awareness Month page we made to help answer some common questions we get a lot.
We're almost at the 30 day countdown till Disney! There's so much planned with the help of or wonderful family friends who are gifting our stay and more! Although these final steps can be a bit intimidating! Traveling with medications and those including needles is not going to be fun. Just makes that 7:30 am flight pee arrival time probly a bit earlier than we should...
We have tons planned for this month ahead!
•a trip to the cabin in PA
• local ducks unlimited dinner
• our anniversary dinner with some friends who will be celebrating a birthday on their end.
• a super huge day of tests for Eric at Temple
• last warm day weekends at the beach where they fit
Ending the month in style and starting October off with a bang!
• Disneymoon (that would be a Disney honeymoon for the non-Disney phanatic's)
• 5k in Moorestown, NJ for our late friend Sean Fischel who died earlier this year of complications from HLH. process benefit local children's charities. Message or check back soon if you want to join!
We are so excited to announce that we will FINALLY be taking our honeymoon to Disney. This one will not include the alligator hunt, but when Eric is better I hope to take him on one :)
Exceptionally generous and kind family friends decided that they wanted to help check off an item on Eric's Bucket List an being the Disney phanatics they are- they found the perfect thing to help us complete. We will be staying at Animal Kingdom's Kidani Village with a view of the Savannah right from our balcony. There's nothing like waking up with the Zebras!
So excited and so much to plan! Hoping Eric's Lungs heal quickly! The benefit to Disney is that they are SO accommodating and they get tons of make-wish families-making us feel comfortable with being so far away from our amazing Temple Doctors :) I've done tons of research and talked with our friends who set us up on this great adventure and we will have advantages of the Disney Magical Express shuttle from the airport to the hotel an back, availability to receive a special card that allows us to not stand in any lines in the sun (Eric is restricted to sun exposure due to his medications like the methotrexate chemo injection, steroids ect) Not to mention the effects of the Still's Disease would limit the time his body could withstand staying in one position. We also found out we can rent a buggy if he's tired from walking. I wonder if I can hitch a ride? lol.
And the planning continues!!
Amanda Majusiak is a GIS Professional who focuses on web design, graphic design, photography and social media outreach.
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