Just Tired

Well the storm came. Just as I sensed that it would. At Least she waited until after her birthday to get sick.

We just spent three very frustrating days in the hospital. Mia lost vision and sight intermittently three times in one day, which was three times too many so we were sent by neurology. Of course her actual neurologist was out of the country and the covering doctor was not only not familiar with her case but she was not very nice either. Sorry to bother you covering neurologist……I am only asking you to do your job that you get paid for (insert rolling eye emoji here).

So as I am pulling into the parking lot getting ready to walk into work, I now have to turn around and pick my baby up from school and take her to the ER. I call my job to let them know. They are not very nice to me and the weight of that weighs on my heart. I shouldn’t care. I should just concentrate on Mia. But if I am honest, it hurts that they don’t understand. I guess that you have to actually live this life to understand though, right?

I get to the school and pick up Mia and off we go. The ER is jam packed but we get in rather quickly due to Mia being immunocompromised and immunosuppressed. Then we get to tell the story of what happened 16 different times to 16 different people because this is a teaching hospital. I know ….the residents need to learn, but it does not make it any less frustrating. Mia is admitted. MRI with sedation is scheduled for the next day. She is dizzy and her neuro exam is not normal.

So upstairs we go to tell our story to 16 more people 16 more times even though it is almost midnight and we are both thoroughly exhausted. We spend the next two days in the hospital running tests and running in place. Neurology feels it is an issue for ENT and ENT feels it is an issue for Neurology. So what have we accomplished? Nothing. More symptoms to an underlying disease process we know nothing about and my baby is still sick. We go home and have to follow up with our out of the country doctor in the city. “But I still feel sick” Mia says and we roll away in the wheelchair. “I know mama” I say with a tear running down my face that she can’t see.

I am so tired. Tired of fighting for answers, tired of trying to figure them out myself. I am tired also for selfish reasons. I am tired that I will never have a normal life. I can not just go to work and come home like normal people do. My bank account is financially exhausted from the past 12 years of living the chronic life. I have lost my house, some friends and what I thought was going to be my life. I am tired because my eight year old does not understand why I spend so much time with Mia and not her. I am tired because there is not enough of me to go around. I can not be a good mom to my other kids, or a good wife to my husband. I can not be a reliable worker to my job. I can not be so many things that I want to be. There is just not enough of me.

The uphill battle continues. We have only pieces of the puzzle. Mia has been sick for almost two years and all we have is puzzle pieces. We know she has resolved HLH, but it could come back. We know she has Crohn’s Disease and some kind of underlying autoimmune disorder. We know her immune system does not function properly and that she may have a seizure disorder. We know that she has a cervical thoracic syringomyelia. We know so much, but we still have no answers on how to make her better. It is not fair.

No happy ending to this blog. No quote on how we can make this into lemonade. Sometimes it just plain old sucks. And that is ok too.

Keep Breathing.

~D

14 thoughts on “Just Tired

  1. Reading your blog makes me see how we take so many things for granted. I wish there was something I could do, praying you get the answers you need and Mia gets better 💜

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  2. 😢I wish I could I could say it will be better soon. I hate the fact that we know you will likely leave with no answers at every hospital stay, yet you always have to go and try. Motherhood alone is exhausting. Your brand of motherhood requires superpowers.

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  3. Dina my heart breaks for you. I would never forget the day we started at stony brook together. I was a scared new nurse, and it was so nice to have a great friend like you working hand in hand in the nicu. You are the strongest person I have ever met for all that you and your family has been through. Having a chronic Illness and autoimmune disease myself on immunosuppressive medications, you are correct, no one understands what it’s like unless they live it themselves. It’s fustraing, depressing, and aggravating that medicine still can’t figure out about autoimmune diseases.

    I am always here for you Dina if you need a shoulder to cry on, or just for someone to talk to. Your daughter is so lucky to have you as her mother! I will keep you and Mia in my prayers!!

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  4. This resonates with me on so many levels. As the mum of a daughter who had multifocal LCH for 12 years [now in remission but left with many ‘issues’] I feel your frustration, exhaustion and desperation. You certainly learn who really does care about you and your family and who just can’t deal with your reality. Stay strong for each other .

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  5. We are in a roller coaster of a medical journey after my 15 daughter had HLH. It is primary with a XIAP genetic deficiency.
    We battle with Constant fatigue headaches , anxiety and every virus that crosses her path she seems to get.
    I totally understand where you are coming from.
    We also have great frustration dealing with doctors .
    I wish you well and enjoy your writing skills💙

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  6. This is my first time here. My heart breaks for you, your daughter and your family. All of what you say resonates with amazing truth, but only those who’ve passed some of their lives in a medical “hell” will truly hear your heart. We spent August 2016 to August 2017 in hospitals. Our 19 year old son was diagnosed with a rare form of childhood cancer. While we received a bone marrow transplant at Children’s Hospital of Philadelphia, our “next door neighbor” was a 26 year old man battling HLH. I listened to his mother’s life…her fears, concerns, dreams and hopes. This young man was determined, and though things are still hard, he is home and living on his own. A life of uncertainty, but the benefits of appreciating each moment granted has its blessings. Praying for your job, for the level of stress you carry.
    From a mom whose child’s diagnosis and answers gave us a final outcome, I pray you connect to those who can walk with you through and PAST the difficulties. 🙏🏽❤ Sending you love.

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