These days the train ride over the bridge is so unbelievably that slow that I have found I can actually write an entire blog post while going from Philly to Jersey on the way home from work. (I often schedule our Facebook posts on my way in as well.)
Today is particularly packed with all seats filled and standing room filled as well. Of course of all places I sit next to the lady who sneezes and then continues to flip the pages in her book without using hand sanitizer. It isn't until she sneezes a second time that she then takes the tissue out of her pocket to wipe away the grossness. However, where was the tissue when she sneezed? No consideration for those around her.
Back in the day I would have just thought this was gross and shrugged it off. But for the fact that I have to think about every possible germ I being home being the next one that could trigger either of Eric's diseases, it boils my blood. Eric may appear to be 'healthy' or 'look good', but a deep reality for us is how weak and vulnerable his immune system is. Eric takes 3 drugs (Humira, Medrol[steroid] and Methotrexate[mild chemo injection] regularly that inhibit his immune system from overreacting and this preventing them from properly getting rid of any harmful germs that enter his body.
There are too many people in the train so I will have to stay here. So to begin my evening I will have to throw everything including my jacket into the wash when I get home and Lysol my Bean boots .... It's the least I can do to try and not get Eric sick.
So I ask you all to please be more conscious of your actions when sick in public. I can deal with the grossness, but it's really selfish to not try to contain yourself and reduce the risk of spreading whatever bacteria or virus you may be carrying to anyone, let alone all the young, elderly, and suppressed immune system patients.
1 day of going to work sick can cause someone like Eric to be sick for a week or worse, death.
Helpful ways to prevent germs:
• WASH Your HANDS
• Use hand sanitizer with 60%+ alcohol content.
• Cover your coughs and sneezes at all expenses. Wear a mask.
• Stay home if you have a fever or cough.
• Spray your handbags, backpacks, shoes and car mats with Lysol to prevent bringing germs into your house. Taking your shoes off at the door also reduces your risk.
• Wash your jackets frequently.
A Sense of Purpose
Throughout our entire lives, both young and old, we are constantly searching for a purpose. Some days are brighter than others. Some days you can hardly see the light. No matter how big or small your troubles are, you are always searching for something new in life. I used to find myself searching for the reason our family has been plagued with loss and heartache, but over the past year I have become connected with some of the most amazing people around the world.
9 years and 10 months - the time i knew Eric before he was diagnosed with HLH. In that 9 years I searched to find myself, my career, my future goals and dreams. All of it was ripped out of my hands the day the nurse told me she was making my 27 year old husband 'comfortable'. 90 days later he was blessed with a second chance at life.
We are one of few who can say this. Many never make it home. Their families are left searching for the reason, searching for their purpose in life after losing a child, parent, spouse, relative or friend to HLH. Today I had connected with some HLH family-friends I hadn't spoken to recently because of how fast paced life became in the last few weeks.
I had just a short bit to gather some items for our next blog post only to find ANOTHER adult, a beautiful young girl from Australia had lost her life to HLH last week. My heart breaks for her family. Our HLH family is one of the most amazing groups of people I have ever met. We may all have our own quirks, religious beliefs and life styles, but the one thing we all have in common is the connection to that disease no one can say once, let alone 5 times fast.
For this reason alone, we have decided to keep the Histiocytosis Awareness blog running all year long so that each person we meet has the opportunity to share their loved ones journey with HLH with their family and friends online and to help each other along the way as we all join together for the purpose of funding a cure for HLH and most importantly to keep others from losing their lives to a disease so cruel the word cancer can't describe.
This past week i shared a link on our Facebook page that i'm now sharing here as well and I have reached out to the physicians for comment also. This blog article called the HLH The Great Whale of Hematology by Dr. Michael Scott. In his article he writes "However, there is a body of opinion that considers the adult, or secondary, form of HLH to be the far end of the hyperimmune spectrum, essentially only separated from sepsis and DIC by a degree of severity." he goes to to speak about the diagnosis or lack there of - of HLH.
I would continue on, but may find myself regurgitating information from the article. It is so uncomfortably enlightening to know that he and other physicians we know who were not previously emersed in the HLH world are more aware of this disease and recognize the appalling rates of over 50% of a group of 107 consecutive autopsies in a study of patients who died from sepsis showed hemophagycytosis in their bone marrow. HLH is NOT rare, it is RARELY diagnosed.
HLH Awareness is just one of my many purposes.
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!!
Mon, Jul 22, 2013
Standing outside the Today Show in New York with a photo of Eric completing one of his bucket list items at the end of summer 2012. Eric was too sick to make it out this morning, but I'm holding this photo up high for him. He IS the face of HLH & Still's Disease.
stuck on Starting a blog
I have wanted to start a blog for quite some time now. TIME is the hardest thing to find these days. I currently hold a full time position in Philadelphia, PA and I live in New Jersey with my husband Eric, 2 dogs Bella & Buttercup, and cat Tiger. My average day starts off with hitting the snooze at 5am, finding the energy to get out of bed, taking the dogs out, feeding them, getting ready for work, letting the dogs out again, grabbing something on the go before braving the great commute into Philadelphia. An 8.5 hour work day plus commute typically turns into an 11.5 or 12 hour day. Not horrible, but it doesn't really leave a whole lot of time to get much else done come the evening. By the time the mail is brought in and checked through, the dogs are let out, played with and fed, and dinner is under way - it's about 3 hours before I should be going to bed. The little free time that's left during the week is usually spent hanging out with eric and the dogs and catching up on any messages recieved on the website or social media sites. And jeeze, there must be time to fit a shower in there. Now, for working moms, i'm sure that seems like eternity for the amount of free time you must get - but honestly, it's why we don;t have kids yet. We're young, just celebrated 3 years in our house this June, and more than 50% of the time here, eric hasn't beenn. When he was healthy he traveled to disasters around the country and last year spent 99 days int he hospital, most of which he was medically sedated and paralyzed for. So the 'free' time you'd assume I have is spent focusing on eric's medical conditions and trying to figure out where all my energy has gone. After doing some much needed self reflection, Eric & I realised we don't nearly exercise as much as we should. We do exercis-ey type things around our house since we live out in the 'country', but dedicated time is needed. recently we started biking and though I feel as if my thighs have turned into jello and i can't quite feel my ankles - the day after I feel so REFRESHED! So now i'm working on limiting my time spent in the digital world and trying to organize the house a bit better. starting a blog is probly NOT reccomended considering how I already manage Eric's website, and assist with the social media sites, and blog. But it is what it is and there's only 1 way for me to keep up with all of this and that's with my iPhone.
Amanda Majusiak is a GIS Professional who focuses on web design, graphic design, photography and social media outreach.
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The content on this site is for informational purposes only and not intended to be a substitute for professional medical advice, diagnosis or treatment. Please consult your physician to obtain personal healthcare and treatment options.