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So to start this off, I thought that since new readers are likely to come across my blog, I'd give a brief introduction and background about myself and my blog -- hopefully later I can revise it and put it into a tab so new readers can get a better understanding of why I write.
My name is Nikki and I'm 21 years young. I often have people tell me that I have the wisdom, life experience, and maturity of someone twice my age. I've been through a lot in my short life but I try not to let that get me down and I try to build upon the things that I've learned to create the life that I want to live.
When I was 11 years old I was diagnosed with a form of IBD (Inflammatory Bowel Disease) called Crohn's Disease. For 5 years my life really just revolved around battling intestinal pain and bleeding 24/7, doctors visits, countless hospital stays, and trying to keep up with endless school work my 5th through 9th grade years.
My Crohn's has been a tough road for me due to many medications not helping or my body deciding to react to them. Thankfully I have never needed surgery and I have been fairly healthy since my freshman year of high school, though I have had some set backs here and there. Because I have had Crohn's for over 8 years, I am supposed to get yearly scopes and procedures done because I am at an increased risk for colon cancer and various complications so it's really a never ending thing - ahhh the life of a chronic illness!
About 6 years ago I joined an online social network for chronically ill teens and their siblings called Starbright World (SBW). I met a pretty neat guy on Starbright named Spencer Riddle. A guy who was cute, quirky, and full of spunk; we hit it off right away! We also bonded on a more deeper level and related more than most people could.
Spencer had a genetic, terminally ill disease known as Cystic Fibrosis which primarily effects the lungs producing very thick and sticky mucus which clogs the airways making it very difficult to breathe.
Because we were both chronically ill, we "got" each other and really clicked. The only downside was that Spencer lived in Utah and I lived in Kansas. After finally meeting and completely falling for each other, we toughed out a long distance relationship for awhile only seeing each other a couple times a year until I graduated high school in 2009 and moved to Utah to attend the University of Utah and be closer to Spencer.
Knowing that Cystic Fibrosis is terminal and Spencer's health was very poor with lung functions around 30% and on oxygen 24/7, we knew that our window of opportunity to get married and live our lives together was probably very short. Even if Spencer could get a life saving double lung and perhaps liver transplant, he wasn't ever guaranteed a long life. With that being said, Spencer proposed to me during a special trip to Los Angeles in March of 2010 and we tied the knot in Kansas on June 3rd, 2011!
After getting married we had plenty of challenges thrown into the mix. One week after our wedding, Spencer's dad passed away from a long fight with cancer and shortly thereafter his mom was diagnosed with breast cancer. With all of the grieving that Spencer was doing and the heart ache that he was experiencing, his health really suffered and took a huge turn for the worse.
Our predictions of a short window of opportunity to spend our lives together were, unfortunately, correct - though we never could have prepared for what was coming. In September, 3 months after marring the love of my life, Spencer woke up very short of breath, heart rate sky rocketing, and oxygen saturations in the 70's. (should be in the 90's) After significant help from our landlord (a respiratory therapist who previously cared for Spencer in the hospital), multiple calls to the clinic RT, and trying to get him stable at home, I rushed Spencer to the hospital and he was immediately admitted into the ICU in very critical condition. I later found out he had a severe collapsed lung which was crowding out his heart and a sepsis infection. It took them literally all day long to get him stable and before being able to go and see him, his CF doctor informed me how critical his condition was and that there was a very big chance that he would not make it through the night. With thousands of thoughts and prayers going out to Spencer, my best friend by my side, and God on our side - Spencer survived that night.
We spent a total of 3 months in the ICU. Our goal was to get his strength, weight, nutrition, and overall health up so that he could get listed for a double lung transplant. I started contacting multiple transplant centers around the country since our own didn't take patients with such a complicated case. Spencer had a trach and was on a ventilator all of the time as well as multi organ involvement (kidney, pancreas, liver), so centers that would accept him were hard to come by. We did a huge fundraiser in November to raise funds to move for transplant, but ultimately we were not able to proceed with the transplant process. Spencer developed pneumonia in his lungs in November (most likely ventilator associated) and wasn't able to recover.
Early in December we were told that nothing else could be done to help Spencer. After making many absolutely heart breaking decisions and having so many heart-to-heart talks with my husband, he passed away and earned his angel wings on December 11th, 2011.
After his funeral I moved back to Kansas with my parents so that I could properly grieve and take my time to heal so I could navigate the awful life of being a widow. Little did I know that I would also lose my grandma, grandpa, and mother-in-law all within the next 5 months after my husband's death. Losing 5 family members in a year is rough and it has taken me a much longer and harder time than I ever thought to grieve Spencer's death with all of the others losses that I have experienced.
I am now trying to rebuild my life and within the next few weeks I will be moving back to Utah to start over. It's all been so challenging and it had and continues to test so many areas of my life -- but I have grown SO much from all of these experiences. Spencer and I had such a fulfilling relationship, even before we were married. It was a privilege to be his wife and to take care of him while he was sick. I have learned so much.
So that is kind of my life in a nutshell. Most all of my blogs stem from the life events talked about above and if you get a chance, please feel free to use the search bar in the top right corner of the blog to search for specific topics. And if you feel compelled to, please leave a comment for me to read - I love hearing from my readers! =)
Thank you for sharing, my nephew just had his 2 year Angel-versary after 7 years with CF. Now my son has leukemia. My blog is http://briansphirstblog.blogspot.com/2012/06/d-day.html#!/2012/06/d-day.html
ReplyDeleteI just got done looking through your blog and reading your post. Beautiful family. Sorry to hear about your nephew, CF is such a horrid disease. Will continue following your families journey through your sons fight with leukemia!
ReplyDeleteWhat an amazing story - I can't even imagine going through all of this. You must be very strong by now...
ReplyDeleteLook forward to keeping up with you during the Blog Challenge.
~Sunfire
Thank you for sharing your story. I am happy for you that you got to have such a loving relationship, very sorry it was so short. My daughter has Crohn's disease. I also ran in Denver with a woman who was the head of the Crohn's Foundation. I am very interested in ways to adjust your diet to affect the disease~Cathy
ReplyDeleteThank you for sharing your story, Nikki! Much love and strength to you and your family.
ReplyDeleteSorry to hear about your loss. You are a beautiful young lady and very strong.
ReplyDeleteVery inspiring story. I'll pray for you :)
ReplyDeleteI found your blog via the blog challenge. I look forward to reading your post hopefully this year will end better than it started for you.
ReplyDeleteOh, I'm so sorry for your suffering. I cannot possibly begin to understand all that you have been through. Thank you for sharing that. I'll be following.
ReplyDeleteGoodness! Wow ... what amazing experiences you've had and I can't begin to imagine how hard all of that was. Spencer was so lucky to have you (and you, him) for the time you were together.
ReplyDeleteI'm very much a believer that everything happens for reasons we may never know and while I'm sure you wonder about all of it from time to time, it's clear you were fully present with your heart for all of it (not just Spencer but all those close to you who seemed to have left the earth around the same time). I suspect they needed that.
I am wrapping you in a bubble of love from way over here in Maryland. Peace to you.
First, thank you everyone for your comments and kind words for Nikki. I am her mother and am grateful for all the support she gets.
ReplyDeleteI would like to put in two cents more about her. Not only is she grieving for the loss of her husband and multiple family members, she is facing numerous other challenges that are, simply put, scaring the bajebees out of her. It is one thing to have your decisions made about your future when you are just out of high school, it is totally another when your other half is gone and can no longer give his unique opinion about things to help her make informed decisions.
Please wrap your arms around her and ask for guidance for her as she moves forward toward the next chapter in her life.
Again, I thank everyone for your kind words and support.
Mom