When the Love You Feel Doesn’t Match the Love You Show

For quite some time now, I have been battling a mystery illness. For years I have had off the wall symptoms and for months we have been looking for the cause as my symptoms continue to get worse. This post is not about my illness or who can guess what’s wrong with me. This post is about my husband, my children and those around me.

I love that I get to be a homemaker. I have an opportunity that a lot of moms don’t have. I get to wake up everyday and make our house a home. I get to daydream about the decorations I will make, the chocolate cake I will make every year for our children’s birthdays, the handwritten notes I will send in their lunch boxes, the clean house and warm dinner I will have ready for my husband when he gets home from working hard all day, the flowers we will plant and watch grow, the pets we will love on, the memories we will make as we have friends over, the forts we will make and the sleepovers we will have. And these dreams make me so happy! My heart just overflows with love and the thought of having a family that is close and has open communication. I love knowing that I have the very important job of making our home a safe haven to express our emotions and decompress in. The trouble with this lately is…. tends to stop at the dream phase.

Last night I went to the coffee shop to do some work for the Usborne Book business I just started (yet another thing I do to cater to my illness….to keep my mind off of it and earn money to pay the unending medical bills) and this morning when I asked our 4 year old how her night was and if she was ready for a great day at school, her answer made my heart shatter into a million pieces. She replied hesitantly, “I kiiinnddaa like dad more than yooouuu…..” I calmly asked her what daddy does that she wished I would do for her and she said, “He be’s nice to me.”

Well, that was hard to hear. I don’t know how I took it so calmly (probably the fatigue I’m fighting), but it made me think. A lot. Like women already do all the time anyway. I started thinking about how being sick has totally taken over my life and it is effecting those around me. My quest to find an answer has come before my family. My mood swings are becoming intolerable for those under my own roof. The safe haven I am supposed to be creating is crumbling before my very eyes.

How is it that I spend at least half of my day daydreaming about all of the wonderful things I want to do for my family to show them I love them and how I can’t wait to give them a big ol hug after school and how they are growing so fast and I’m so sad because of it……but what they see is a mean mom. A mom who doesn’t have time for them, is too tired for them, has to leave them and change their routine so she can go to yet another doctor’s appointment. They see me and they don’t understand because I don’t look sick. I’m not sneezing or coughing or holding my belly due to a belly ache. I have no scratches or needs for a Band-Aid.

Is it up to me to tough through it and stop searching for answers in order to restore peace in our home or is it up to me to tough through it until we find an answer so I can get better for my family? It’s really a toss up. Until I decide, I guess I will work on “be’s-ing nice” to our kids so they don’t hate me.

 

Being a Believer During Times of Uncertainty

You haven’t heard from me in over a week and considering the excitement I had over the “25 Days of December” series (I promise I will get those last two posts out!!!), this is kind of weird, right? Right. It is. That’s because I haven’t been myself the last week and a half or so. And to be honest, I haven’t been myself…for the past 15 years.

I confide in my parents, sister and some close friends, but really I don’t share much about it because I feel kind of crazy. I feel like a hypochondriac. It’s my health (or lack of sometimes) and I have no idea what causes it and have yet to find a doctor who knows either. This time I won’t stop at “I Don’t Know.” I am on a mission to find answers.

Because this is a faith based blog and my number 1 goal is to always be transparent with my readers, I want to share with you that I am struggling. I am struggling to find a balance or an answer.

Are you lost yet?

Starting in 6th grade with SEVERE constipation (sorry for the TMI) and growing into more symptoms and -more often- ever since then….. I have had my fair share of ER visits, doctors appointments, tests and uncertainty.

In 2007 I experienced my first big episode since 6th grade. I was dizzy, would fall asleep driving (we are talking about driving just across town), had chest pain, heart palpitations and shakiness. The doctors did tests but found nothing. I was healthy and normal.

Again, in 2010, I experienced a few months where I was super dizzy almost passing out, having hot flashes, chest pain and heart palpitations again. The doctors ran even more tests and did find some irregular heartbeats and put me on some medicine…..that made it worse. To the point they couldn’t find my pulse in the ER. After that visit with my doctor where his face turned ghost white because he admitted he gave me too high of a dose – I stopped all efforts to see a doctor and GAVE UP.

In 2014 after our honeymoon, I found myself in the ER because I literally could not walk. Severe constipation again.

With each pregnancy my symptoms would reappear and get worse. It was very hard to work or even get ready in the morning due to the dizziness. I would go into the doc or ER and they would give me fluids and send me on my way.

In 2015 I was pregnant with our son and had the “normal” me symptoms of dizziness and hot flashes, added some spider veins and severe itchiness but I was pretty used to it and tried my best to make it through.

Towards the last few months of pregnancy I just felt like something wasn’t right. I sat in the OB office and bawled, telling her how I really didn’t feel good and requested she recheck my due date or do an ultrasound or something! She said she would not change my due date and refused me an ultrasound. Let me just add in that she had pushed it 2 weeks out from the original one which meant 2 more weeks of this horrific pain! I even went to the ER feeling like maybe I was in labor or something and requested an ultrasound. They refused me one there too. I got desperate enough that I called my previous OB who was no longer delivering and asked for his advice. After a long chat on the phone, he so selflessly offered to assist in the c-section. Boy did he save my life!

Come the day of my scheduled c section……we found out in the middle of surgery that I had a hole in my uterus big enough to deliver our son out of without an incision!!! Right then and there, I promised myself that I would no longer ignore my gut feelings and I would demand answers when I didn’t feel right! It’s a miracle our son and I made it out not only alive, but with NO complications. Praise God!

Following this experience I fell into post partum depression. For a few months- but it felt like YEARS! Terrible. I lost all interest in life and my family. I also had spinal headaches and had to get a blood patch that was very painful and pretty much locked up my back for a few days. I couldn’t move. I also had my tubes tied, when they found that my uterus was attached to the lining of my abdomen with scar tissue making for a longer surgery. But we made it out ok and I was ok with that!

I had also started back to work and noticed my vision wasn’t the 20/20 I had always had. Signs were starting to get blurry. I went in and got a prescription and some new glasses, only after a week of trying to get used to them they just weren’t working. I went back in to try and correct the prescription with no luck. I returned the glasses and have just dealt with the blurriness when it shows up. It is not all the time. I also had an episode at work where all of a sudden I just couldn’t handle it. I sat and cried and felt shaky and disoriented and dizzy and was sent home.

After recovering from that whole ordeal, life was great! I felt like myself again! In fact, feeling very optimistic about the future! In between “episodes” I always feel great. I feel like I can take on the world!

Then about 5 months later, I was taking a marketing class at the local college and started to get a headache. No biggie. Ok, that’s a lie. The headache got so bad. I started to get super shaky and disoriented. I tried to drive the 30 mins home but made it 5 mins, stopped on the side of the highway and called my husband. I had no idea what was going on! A whole list of symptoms I won’t bore you with sent me to the ER where they pretty much just blew me off and prescribed me Dramamine for my dizziness. I am calling this episode a panic attack for lack of any other information from doctors on what it could have been. I felt like I had a heart attack.

Now here we are – 4 months later and I am having new symptoms along with old ones and feeling so unlike myself I’m at a loss. I am getting clumsy, knocking things over and mis-aiming when I go to grab things. I have flushing in my face where I turn bright red and have a burning sensation. I feel like bugs are crawling on my scalp. I am freezing all day then having night sweats at night. I am dizzy pretty much 24/7 and having a hard time remembering what I’m doing. I have tingling in my back and severe itching in my right leg from the knee down. I have headaches often and fatigue. I am usually passed out on the couch by 8 pm.

I am waiting on insurance to go through any day now so I can start seeing a new doctor and get to the bottom of this. 15 years is too long to suffer and have zero answers. These “episodes” are getting more frequent and adding on more symptoms and all I really want is to be healthy so I can take care of my babies and husband and write this blog like my heart is hungry for!

Now maybe this is a mistake on my part, but I have been doing a little research. I confided in 2 friends – one who got diagnosed with Lyme disease recently and another who just got diagnosed with Multiple Sclerosis last January. I have researched each of these diseases and many like them and started looking into my family tree. My grandfather on my dad’s side suffered from Spinal Atrophy, which doctors thought was MS due to lack of MRI’s back then and I have very few memories of him using a walker, most memories are of him in a wheelchair. From my research, what he had is genetic.

Because this is a faith based blog and my number 1 goal is to always be transparent with my readers, I want to share with you that I am struggling. I am struggling to find a balance or an answer. Do I continue to dig in, research and find answers? Or do I have faith, like I am always talking about in my posts? Do I trust that God will heal me and cease all efforts to find answers? Does God want me to find answers so that my story can be a testimony of faith and healing for others? I am honestly in a period of uncertainty and I would love your grace during this incredibly confusing time. I have a deep, deep passion for this blog and all of the studies and posts that are part of it. I want to continue to bring hope to others through the story telling of my experiences and the transparency through which they are told. Please pray for me and our journey together as believers.

MUAH!! Thank you all.