Life Through a Lens and Late Stage Lyme Disease

How is that for an alliteration?! I’ve been avoiding my blog for months now, especially writing this post. I’ve gone back and forth on whether I would just ignore the fact that I’m sick, or just come to terms with it and commit to my “new normal”. I’ve decided that it’s a little hard to pretend that I’m living life as usual considering I’ve been ordered by the doctor to cut back on work (and life for that matter).  Not to mention, it’s a bit obvious that I’ve slowed down by the lack of my posting (although I do have a gazillion sessions I need to blog going as far back as May!)…

So here it is – I have Late Stage Lyme Disease. Not to be dramatic about it. LOL. For most people, they have no idea what exactly that means. I, myself, really had no understanding of Lyme disease when I was diagnosed. In fact, after being tested for MS, tumors and blood cancer I was actually relieved to hear I had Lyme Disease. At that time I had no idea the epidemic it has become, the medical controversy it has ignited and the devestating effects it has on it’s victims and their families. That being said, I feel like I’m one of the lucky ones. I was diagnosed accurately at my first doctor’s appointment regarding these specific issues. I’ve since learned that many patients go years being misdiagnosed with MS, ALS, Lupus, Leukemia, RA, fibromyalgia and my personal favorite – it’s all “in your head”. By the time these poor people have been accurately diagnosed with Lyme, they are debilitated by the disease suffering from seizures, paralysis, and severe cognitive problems, just to name a few.

What I have also learned about Lyme is that it can be a very misunderstood and misleading illness. The reason is that a lot of sufferers look completely healthy to the outside world. Many actually look like the pillar of good health due to the strict dietary constraints and prescribed exercise regimen.  A lot of the symptoms of the disease are also easily masked with a smile. Many Lyme Disease patients have mastered the art of smiling through extreme pain and extreme fatigue among many other symptoms. To give you a quick overview of Lyme Disease – it is transmitted through the bite of a tick. The disease is caused by a spiral shaped bacteria called (Spirochete) called BORRELIA BURGDORFERI. This bacteria can cause an infection in multiple organs and can produce a wide range of symptoms. Fewer than 50% of patients remember being bitten and even fewer remember a rash. Lyme disease is called The Great Imitator because it imitates so many other diseases, thus the problem of misdiagnosis. The other issue with gaining an accurate diagnosis is that currently there are no accurate diagnostic tests to prove the disease is present. The spirochete is an isidious bacteria that is constantly evolving and becoming smarter, even hiding deep within soft tissue such as the brain. It preys on the nervous system, the immune system and the body as a whole. Many Late Stage Lyme patients require long term antibiotic therapy, both oral and IV, until the symptoms have been resolved. Relapses may occur and further treatment may be required. There currently is no cure for Late Stage Lyme Disease.

Everyone always asks what my symptoms were and how did I know something was wrong. After putting all of the pieces of the puzzle together, our best guess is that I was bitten in August of 2012 while on vacation with friends in Minocqua, Wisconsin. I was two months pregnant at the time. Subsequently, I had a very difficult pregnancy. I was sick all of the time. I suffered from extreme fatigue. I had problems gaining weight, only gaining 12 pounds my entire pregnancy. Finley was a small little peanut, weighing only 5 lbs. 14 oz. when she was born. I had low amniotic fluid and suffered from bizarre symptoms such as random paraesthesia. We have since been able to link my vocal cord problems and need for surgery to Lyme as well. Those are just the things I can remember. To think we were all on the look-out for the wolves and bear that occupied our vacation spot, when it was really a tiny tick that should have been our biggest fear? Crazy.

I’ve since learned that Finley was our little miracle baby. Most babies of mothers who have untreated Lyme Disease are miscarried, delivered as stillbirths, or die shortly after birth of various complications. Like I said, I am one of the lucky ones. I truly thank God everyday for her. We don’t know if Finley contracted Lyme congenitally and only time will tell. It can be transmitted through the placenta, and has also been found in breast milk. I breast fed her for five months. What I can cling to is that right now she is a perfectly happy, and as far as we can tell, healthy six month little girl. I can’t really allow myself to worry about that prospect. The thought of having passed-on this horrible illness is really too much for me to bear at this point. I can only have faith in God that he will protect her, or give us all the grace to deal with whatever is in our future.

After I delivered our sweet little angel the symptoms really came on strong. I started experiencing horrible, debilitating fatigue, which I chalked-up to having a toddler and newborn at home. I also started experiencing tingling and numbness in my hands and feet that would radiate up my arms and legs. It almost felt like electrical currents running through my body. Then my face started feeling numb and tingly. That was followed by horrible joint pain that would migrate from joint to join depending on the day. I also felt like my bones could snap in half from doing benign things like ringing out my wet hair after a shower. I was having cognitive issues too. I would stare at the dishwasher trying to remember what it was called. I had horrible short term memory and couldn’t remember what I was doing, or what I was planning on doing. At that point I knew there was something very wrong.

I am forever grateful to my doctor and to her PA. My PA immediately suspected Lyme, but was very thorough in diagnostically ruling-out all of the other usual suspects. They immediately put me on the appropriate antibiotic. I have since started seeing an awesome specialist who has really given me hope for my future. I’ve been on Doxy for six weeks now. I have been resting a lot, which for those of you who know me is very hard. I’m on a strict diet that excludes sugar and alcohol, among most other fun things. That I have to laugh about, because sugar and beer were my two favorite food groups. Ha ha. I will be going off of antibiotics at the end of the month and I’m anxious about what might happen. We’ll just have to see if my symptoms come raging back. If they do, there are other combination therapies and IV antibiotic therapies through a PICC line that I’ll have to explore. I’ve come to accept the fact that at the present time I am battling a potentially chronic illness.

I have so many blessing to be thankful for. I have the most amazing husband in the world. I have two beautiful children. I have a wonderful support system of family and friends, and although I have to take a step back from my photography, I am living my dream. There are so many people battling much more difficult battles. Mothers and fathers lose their children, people battle horrible cancer and,or addiction. There are wars being fought all over the world with many, many innocent people being persecuted. This is a world full of suffering and sadness.  But what we all have is HOPE. HOPE in God. I truly believe that by the grace of God we can always find something positive within the pain. I can tell you that I have had some experiences that I would never have had, had I not contracted Lyme Disease and I can confidently say it was worth it.

Right now I’m staying positive. I don’t have a choice. I have these three people to hold myself accountable to…

So, enough about Lyme. I’m ready to start living life again (whatever that might mean for me these days). I refuse to let this define me. Stay tuned for sessions I’m going to finally start editing… and a gazillion pictures of my kiddos. Thanks for reading!

 

 

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