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!
Amanda Majusiak is a GIS Professional who focuses on web design, graphic design, photography and social media outreach.
Connect with amanda