Archives For raising children while living with lupus

The following post features my amazing sister-in-law Alyssa and her journey through Lyme Disease. Lupus and Lyme can often be mistaken for one another. Although very different diseases, they can have some similar symptoms. We can understand each other in a way that no one else does. She is new to the blogging world and I know that you will truly enjoy her writing and feel inspired just as I do. Show some love! 

For me, the most shocking part of living with Lyme disease stems from how slowly and yet how quickly the disease progressed. My immune system was never the strongest growing lyme-lightup, and I began having some persistent gastrointestinal digestive issues in 2009.  I also recall some weird times when I had lower abdominal or back pain and had to have my ovaries, bladder and kidneys tested, but results never revealed a cause.  The strange symptoms would resurface and then disappear again.  The most frustrating thing was never finding any answers.  I had my gall bladder removed in 2010, which provided no relief.  I struggled with periods of remission and illness for about four years.  I grew accustomed to the symptoms and just assumed that everyone experienced the weird things that popped up every now and then, and the rest of the persistent digestive issues were simply normal for me.  At times, the illness interfered with my classes or my plans, but I was able to push through.

 

I had become accustomed to my illness, but on the other hand, when the Lyme really progressed it was like a whirlwind.  This past summer I began a quick downhill tumble, picking up more and more unexplainable symptoms and growing weaker and weaker as the months flew by.  It started with fatigue and an intense pain near my left rib cage.  Then I couldn’t stand for more than a few minutes without my legs turning purple with bright red splotches and an itching sensation so strong that I have to sit down and elevate them.  I started wearing sunglasses indoors because the light shining through windows causes a severe headache behind my eyes.  Sometimes I even have to wear them at night when I’m in the car because the headlights of oncoming traffic have the same effect.  My hands and feet randomly go numb, tingle or burn.  I have chronic sore throat and swollen glands, discolored fingers and brain fog.  Some days I have a hard time remembering anything.  I run a constant low-grade fever and experience hot and cold flashes and night sweats.  All the weird symptoms piled up, but the fatigue, joint and muscle pain are worst of all.  My health was spiraling out of control, and I still wasn’t finding any answers.  By the age of 22, I had seen 10 doctors, several unconventional health consultants, had two colonoscopies, two endoscopies, a cystoscopy, a surgery, multiple hospitalizations and countless ultrasounds, CT scans and blood tests.  I tried changing my diet, eliminating stress, taking health supplements and medications to no avail.

 

My mom’s cousin who has Lyme heard about my health from my grandparents and warned them that it sounded like the disease that had torn apart his own life.  I remembered two tiny itchy bug bites with black centers from a fishing trip in June, and that realization pointed us in the right direction.  Lyme disease comes from contact with an infected tick, and it’s likely those bites I remembered could have been from ticks.  I’ve also been bitten by ticks numerous times growing up.  There is no way of knowing exactly when I contracted the disease as it can lay dormant for years until a trigger causes it to suddenly progress.  I began seeing a nurse practitioner in Edmond because there are NO Lyme doctors in the entire state of Oklahoma.  Skeptics in the medical world refuse to acknowledge the existence of chronic Lyme disease because the blood tests for the disease can show false negatives and aren’t the most reliable.  Therefore, the disease is often diagnosed clinically based only on symptoms.  Lyme, like several other autoimmune diseases such as Lupus and Fibromyalgia, disguises itself in a myriad of symptoms that often reflect other illnesses.  It’s easy to misdiagnose invisible illnesses that cannot be confirmed on paper.  Therefore, many traditional physicians say that chronic Lyme disease does not exist.  They claim that Lyme disease is treated with 10 days of antibiotics.  Yet, so many patients deal with two to three years of severe illness and treatment, and then experience relapse years later and have to begin treatment all over again.  Not only do patients fight the disease, they also fight the belligerent medical community that refuses to acknowledge our suffering.  The longer a person with Lyme disease goes untreated, the more severe the disease becomes affecting the brain, heart and other crucial organs.

 

More doctors in northeastern states recognize and treat Lyme, as the disease originated in Lyme, Connecticut.  Here in the central U.S., it’s a different story.  I happened to get online one day and look up “Lyme walk” or “walk for Lyme” because I was inspired by my sister-in-law’s involvement in the local walk for Lupus.  I found one hit for a Lyme walk, and it was held years ago in the northeast.  The awareness in our area barely exists.  I drive six hours every four months to see a specialist in Columbia, MO.  A few friends of mine see specialists in Nevada or Texas because the number of cooperative physicians in this part of the country is limited.  Thousands of people suffer from chronic Lyme disease as I am.  I can’t speak for them, but I can certainly speak for myself and say that this disease is real and must be acknowledged.

 

After two extremely high-dollar Lyme blood tests, and visits to Linda Lea the nurse practitioner in Oklahoma (who paid out of pocket to travel, train under other Lyme physicians and learn more about the disease) and my specialist Dr. Crist in Missouri, I got my positive diagnosis in December.  Now my disease has progressed so that I have been forced to drop out of school, one semester away from graduating, quit my job and most social activities.  I’ve been on a regimen of rotating strong antibiotics since November.  I also follow a gluten-free, sugar-free diet and take a lot of natural supplements to help my body fight.  No treatment works the same for every patient, and therefore I’m trying anything and everything to get over this illness.  My sweet husband and I got married in May, and wow, this is not what I expected for my first year of marriage.  Everyday is a struggle, but I have certainly gained new perspective from my illness and learned that though I have no choice in the matter, right now I am going to live a purposeful life at a snail’s pace.  I have the option to use this time to smell the roses and the blessings God has given me and to realize the beauty in every accomplishment I make – even if my day’s sole accomplishment was getting out of bed, taking a shower, talking to a friend or being pushed through the park in a wheelchair.

 

 

I used to have such an incredible memory. If you asked me what I wore last week, the meals I ate or what the conversation was about that we had last Tuesday, I could tell you every detail right down to the last vegetable on my plate. You think I am kidding? I had a steel trap for a brain! It was a gift really. I loved being able to be the one to give you the meaningless details of things or answer a question that no one else could remember. Then I heard this crazy story… that when you started having kids you start to get “the mommy brain.” What? I couldn’t help but laugh and think that it was the most ridiculous thing I had ever heard, mommy brain, that’s hilarious! I went on about my life. A little while later I had my son, still not considering this crazy story as a reality. Well I have a little secret for you… it’s for real! All you moms out there are probably laughing because you were waiting for that confession, if you aren’t laughing it’s because you haven’t experienced it yet!

Here’s the thing, I don’t think that it is a 24-hour kind of deal. It’s more like this…we have so much on our minds as we worry about everyone else in the family that we start to forget where our sunglasses are… and then magically they turn up PB&Jon top of our head. I  look at it as the tiny details are blurred in the picture and eventually they come into focus, but it may take a while. My most recent encounter with this was just the other day. I was having a lovely lunch with my friend from work. This particular day I had packed a peanut butter and jelly sandwich and used my sons spider-man sandwich container (that’s right spider-man). We finished our lunch and went on about our day. That is until about 11:00 pm that night when my eyes popped open and I realized that I had thrown away the spider-man container! Agh! Let me tell you I was so frustrated with myself! It took me forever to go back to sleep. The next morning I told my friend what happened and so we went pilfering through the trash can with kitchen tongs (I know it’s kinda gross, but it was a tiny trash can so we had to see if it was there!). And guess what… there it was!

Don’t worry it has been washed…several times!

I honestly have to say that this was something I never expected as a mom. I figured my steel trap would be with me forever. I guess that I was wrong about that, but I am okay with it because the blessing of my son is well worth it! There is something to say about moms, we are constantly serving our families, and sometimes we just don’t think about the small details of a sandwich container. The good thing is we can laugh about these little moments!

How is your mommy brain treating you today?

 

This article I wrote for a guest blog on EpicParent.tv. Head on over and check them out! 

Photo Credit: Shawn Carpenter