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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.

 

 

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“You are my strength, I watch for you; you, God, are my fortress,” Psalm 59:9 (NIV) 

This week I have been exhausted. No amount of going to bed early will help and coffee won’t do the trick. Sometimes this is just life with lupus. I have only known about my having this disease since May but the process of finding out what was going on with me began back in January. I started to notice that my fingers would turn bright white and go numb when I was cold. When I am saying white I mean stark white and it would take a solid 10 to 15 minutes before my fingers would turn back to normal. It was really alarming and I wasn’t sure what was wrong so I took a picture of them and posted it to Instagram and then I took that picture and showed it to my family doctor. At that point we began the process that lead me to my diagnosis. So many things that I have struggled with began to make sense as they were signs of my lupus yet I was unaware and by themselves they seemed harmless enough to not got to the doctor. But even then there were things that I had gone to the doctor for and it was missed, like several years back I went to the ER for chest pain and it was said that I had inflamed cartilage causing the pain but in fact it was my lupus. My symptoms were wide-spread at first so they were not being noticed and lupus is a disease that has times where it is active, flare ups, and times of remission so it wasn’t until this May that I learned what was truly going on with me.

No one wants to hear that they have a disease that they will have to deal with for the rest of their life. It stinks! But at the same time I can’t focus on that! I may not know the reason behind all this, but it is the road that has been set before me. During the long months of waiting I had no idea what was going to be determined and I had my moments of worry, but I truly believe that God gave me the strength to not focus on all the “what ifs” that were so easily there. I felt his presence during this entire process. He has a plan for us all, we may not understand that plan and guess what… that’s okay because it’s in His hands.

Every day looks different. There are good days and bad. And sometimes I have to remind myself that it’s okay to have a bad day.

Every flare up looks different.

Today, and this week I have struggled with fatigue, but tomorrow is a new day.

Chapter One

August 6, 2012 — Leave a comment

I am truly proud to say that my dad has finished his very first novel! Now, this is no small task. If you are a writer then you know 7404623584_660a48e86c_n just how much time and effort is put into every word, punctuation and page to make it exactly how you envisioned it. His first book is The Light of Ordaya by Gary Swensen. This is a fiction fantasy novel and I love reading the words knowing that my dad created it all! To me I look at the finished work of books as art, every word delicately and creatively thought out.  As a writer myself I could not be more proud nor could I be more respectful of his art! If you have a list of books that you are working your way through you should definitely put my dad’s on there! Not only will you get to enjoy the great story but you will be supporting a local writer as well! Happy reading!

Table Tantrums

July 10, 2012 — Leave a comment

Every parent book out there will tell you that the secret to raising a child is consistency. I would have to agree with this statement. BUT, there are some cases where it feels like no matter the consistency, your child is just NOT going to learn anything from the situation and your efforts are completely hopeless. This was such the case last night at our house. It was time for dinner and Eli came running up to the tabel exciteed for his meal. We sit him in his chair put his plate in front of him and immeiately began the tantrum! I made something new for dinner but I had intentionally put sides of potatoes and carrots on his plate, which he normally loves. Every word from his mouth was “no!” He pushed his plate away, we scooted it back, he pushed it away… this was an ongoing process. Throwing the food to the dogs was his next step in his plan of action. Now I don’t know about you but I was completely at a loss, my child has never been a picky eater. I have never dealt with him completely refusing to even try one bite! I had always said that I didn’t want to be a short order cook and make several different meals every night to meet everyone’s taste buds in the house, the kids didn’t have to like what I make but they had to at least try it. Sounded real good before I had any kids… now it’s finally the current chapter in my book. Everything is always easier when you are not facing the situation at the time! So what’s a parent to do when your toddler refuses to even taste dinner? Consistency… right? That’s what everyone will tell you but sometimes it’s just hard when they are in the midst of a tantrum and you are thinking to yourself… is he even learning anything from this? Yes, after an hour Eli did eventually try his dinner after my attempt to dip his potato in ketchup (which grossed me out because I can not stand ketchup, but hey, he tried it!) Whether you have a child that is grown or a newborn, as parents we have all faced or will face nights like these. So remember… while consistency is the key so is supporting each other along our journey in parenthood!

“Do not let any unwholesome talk come out of your mouths, but only what is helpful for building others up according to their needs, that it may benefit those who listen.” Ephesians 4:29 (NIV)

“Do everything in love.” 1 Corinthians 16:14 (NIV)

Just last month I started going to a women’s Bible study about marriage where we are using the book Loving Your Husband by Patsy Loden. The amazing thing about going to this study and reading the book is that of course all of it is meant to apply towards your marriage and your relationship with your husband, but, its much more than that. Many of the points in the book can be applied to all of our relationships. For example, the words we use will either build up our husband or tear him down. The same goes with the words we use with our friends, children and family. What we say to them will uplift them and encourage them or it will tear them down and discourage them. I know for myself that I do not want to be a mother that discourages her children. What kind of message do we send to our family if the words we say are negative and harsh? It is not a message of love that’s for sure. I know that this is not always an easy task. There are times when those that I love are doing something that I just think is crazy and I want to give my opinion, but… it kind of goes back to the old saying “it’s not what you say, but how you say it.” Will the words that come out of my mouth show this person how much I love them? Sure what I am about to tell them is because I love them… (I know we have all thought that). But, there has to be a more loving way to say what is on our mind! I want my children to be raised in a home that is positive, encouraging, uplifting and supportive, a house that is full of love. So one important part about that is making sure that the words I say do not tear up the home that I want. I know that I am not the only one who has spoken way before thinking about it. So, today I am making a goal… the words that come out of my mouth will reflect the love behind them.