Sunday, September 30, 2012

"Lindorf Lymies" PART 1

I know it's been quite some times since I've blogged, let alone taken the time to write just about anything personal down - but I've had a constant feeling that I should take the time to get on here and let you know what's been going down with the Lindorf's.
Last time Justin and I posted on here we were in sunny California "somewhat" living a normal life. Justin was still struggling through serious health issues with no real "diagnosis" of what was going on. I was working full time and taking some night classes. Well some things have changed since then.
We are now back in Utah, living in a great home, a good neighborhood and much closer to family and friends but mostly working through what's been going on in the last couple years.
Maybe you are wondering why we decided to move back to Utah? especially away from what I swear to be one of the most beautiful and greatest places to live - (San Clemente, CA.) So I will explain why. (which is mainly the reason I felt so prompted to share our story with you.) I'll try to sum it as shortly and as simply as possible but those two words are far from what would describe our lives for the past two years - most especially the last nine months. So if you are hoping to read a sweet post about lovely adventures with rainbows and ponies...I would quit reading now - although there is a unicorn or two...

As most of you know (and as I mentioned earlier), Justin has been struggling with serious health issues for around 4 years now. When we met and first started dating he was a Type 1 Diabetic(which had caused him to come home early from his LDS mission in Toronto) and had had it for about 6 months.Throughout our relationship he had some additional health concerns but we associated them to the diabetes. All around he was an energetic, ambitious and charismatic fella who I quickly fell in love with.Well you know what they say about love...Then comes marriage.
We were married in August of 2010 and were ecstatic and more than ready to start our brand new lives together. You also know what they say about life though... It's never what you expect.

About three weeks after we were married, Justin started having serious and severe health concerns and was literally getting worse by the day. He was having severe stomach problems, chronic fatigue, terrible migranes, panic attacks and overnight had acquired terrible joint pain.
Justin had no choice but to drop out of school and quit working due to the chronic pain and fatigue he struggled with on a daily basis. We visited more doctors than I can count, ran dozens and dozens of tests and even had surgeries to try and figure out what was going on with him - but like before they said it was associated with the Diabetes and tests came back 'normal'.
I was blessed to be able to work at the time and we were provided with what we needed- despite our trial at hand. As the weeks went on, we continued to try and live an exciting and happy newlywed life but Justin's health only got worse and it couldn't be ignored. Soon winter came and we knew that if there was anything worse than being sick and miserable- it was being sick and miserable in the snow... So we had the opportunity to move to southern California, in hopes that it would help Justin heal/cope with his symptoms, and also to be closer to doctors that knew Justin and his health history.

At first it was surreal for me. We lived right on the beach, the weather was perfect and falling asleep to the Ocean was pretty close to perfection. Justin also seemed to be doing much better and things were looking up! We started looking for jobs and Justin landed one as a manager of a call center. It worked well at first and then his health started declining again and more symptoms came up. Depression, anxiety, insomnia, fatigue and chronic pain consumed every bit of Justin's world at this point. We both knew that he was going to have to quit his job to somewhat try and deal with what was going on with his body. Shortly after this we were both extremely blessed for me to have received a job that gave me the opportunity to work from home, paid great and something that I really enjoyed.
Months went on and Justin wasn't getting any better. The doctors we were seeing diagnosed him with over 18 different diseases, some including Fibromyalgia, MS, Lupus, adrenal failure, stomach Cancer, food allergies, ALS, rhumetoid arthritis, bipolar disorder, leaky gut, gastroporesis and even  had the nerve to come to a conclusion that it was all in his head. What we eventually came to discover is that these doctors couln't get past their large egoes and just admit that they didn't have any answers. Meanwhile they continued to test and feed him pills, steroids and opiates like some sort of lab rat and we had just about had enough of it all.

In December of 2011 we decided to go to an internist who we hoped would be a fresh pair of eyes and catch the big picture of what might be going on. He took the time to sit down and go through some of Justin's history and at the end of the appointment simply asked - "have you been tested for Lyme Disease?" Honestly at first I really had no idea what Lyme disease was. Some sort of infection from a tick bite maybe? Whatever it was, no.... he hadn't been tested. The doc proceeded to explain to us that some of Justin's symptoms were similar to other patients who had Lyme and that we should consider testing for it. Later that night me and my sister in law Vange (who was visiting at the time) asked Justin if he ever recalled being bit by a tick. After a while of him trying to think-despite all the meds that made his brain fuzzy, he said..."well actually yeah. On my mission. Twice." Now at this point I didn't quite know what to think - I barely even knew anything about this disease let alone that it even was one and if it was really what he had, why had it taken so long to figure it out, could the bacteria from a tiny tick bite really be causing all these problems for the past 4 years and more importantly why hadn't a doctor even MENTIONED anything about it earlier?

We started our research on the disease and just about every symptom matched up. We had his blood sent off to a basic lab and the test results came back negative... oh great. Meanwhile he was hospitalized twice and the doctor who had mentioned Lyme to us- quickly changed his mind and told us it couldn't be Lyme and wanted to treat Justin for adrenal failure. We were back at square one but could not ignore the idea of Lyme Disease.

We later came to find out that most testing done for Lyme is inaccurate and quite frankly done wrong. We did more research and found a lab that specialized only in testing for Lyme disease. We once again sent his blood off, but this time to Igenix labs and waited for the results.
A few weeks later we finally received the results and he was in fact 100% positive for Lyme Disease and other co-infections. We cried, laughed, smiled and quite literally jumped for joy. Finally! We knew what was wrong and we knew there was something we could do about it. After so many sleepless nights, ER visits, depression and pain... it was an answer to our prayers. Little did we know how difficult the journey ahead would be and how complex this disease and the politics behind it really were.

Now if you are alive and aware in todays world - you know that our health care system is broken and corrupt. Well Lyme Disease is down there with it. It does not only get the care, research or even the attention it so desperately needs but thousands of people are suffereing from this debilitating disease without the proper knowledge or testing they need. It's too complex for me to even try and explain in this post- which is why I am splitting our story/experience into separate parts.

I hope that you will take the time to read our story, share it and educate yourself about this terrible disease. I will try my best to explain our experiences and get into the nitty gritty details with the treatment, the health care system, and even more news that we still can't believe.

Until next time... thanks for reading.



Check Out Under Our Skin on Hulu.
( http://www.hulu.com/watch/268761 )


1 comment:

  1. how did I not know this blog existed?? shame on you! j/k no, seriously, i am so sad that i didn't know about this blog until now. i am so impressed with you both, and want you to know that we pray for you guys daily! we love you so much and hate to see you suffering! xoxoxoxoxo