THIS IS MY STORY . . .

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Sep 21, 2016

Hey guys,

 

This week is Mitochondrial Disease Awareness 2016! 🙂

 

I just thought I’d go right in and share a little bit about mito in this post and how it affects so much of the body.

 

I have a mitochondrial depletion disorder which basically means I have less mitochondria than the normal person.  My depletion is very significant. 🙁  You might ask, What are mitochondria?  In simple terms, mitochondria are the energy powerhouses in every cell (except red blood cells) that make ATP.  Every organ in the body needs energy to function.  Without enough energy (ATP), numerous medical problems result.  Because of my mitochondrial disease, all of this happens:

 

-Severe fatigue (I sleep 16-18 hours every day)

-Chronic neuropathic pain

-Use of a BiPAP machine due to sleep apnea

-Myoclonus (muscle jerks day and night)

-Nystagmus/oscillopsia (my eyes oscillate which feels like an earthquake in my head)

-Hyper reflexes due to a problem in my spinal cord

-Generalized slowing on EEG

-Headaches

-Myogenic bilateral ptosis (drooping eyelids)

-Left eye ophthalmoplegia (“paralyzed” eye muscles)

-Hypotonia (low muscle tone)

-Muscle weakness

-Exercise intolerance

-Hypoglycemia (low blood sugars)

-Dysautonomia

-Low blood pressure which causes high heart rate and lightheadedness

-Esophageal dysmotility

-Gastroparesis/intestinal dysmotility

-Nausea/vomiting

-Abdominal pain and distention

-Chronic constipation

-Failure to thrive

-IV nutrition every night through a central line in my chest

-A jejunostomy feeding tube in my abdomen

-Daily IV magnesium with potassium for hypomagnesemia (chronically low blood Mg levels from renal magnesium wasting)

-Hives/itching due to mast cell hyperactivity

-Tinnitus (ringing in ears) with partial hearing loss that comes and goes

-Anemia

-Neurogenic bladder

-Tremor (especially noticeable with daily activities that require fine motor skills)

 

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Because of mito, I have more than 20 different specialists who care for me:

 

Neurology
Gastroenterology
Internal Medicine
Pain Medicine
ENT
Neuro-urology
Orthopedic Surgery
Physical Medicine/Sports Medicine
General Surgery
Hematology
Neuro-ophthalmology
Allergy/Immunology
Physical therapy
Mitochondrial Medicine
Sleep Medicine
Pulmonary Medicine
Cardiology
Hepatology
Nephrology
Podiatry
Palliative Care
Naturopathic Medicine

 

It can get overwhelming to have so many symptoms and so many doctors.

 

But as you read all this, please don’t feel sorry for me..  Rather, I’d like you to be aware of this disease and how it dramatically affects a life.

 

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Just “some” of the mitochondrial diseases that are out there…!

 

This journey has been extremely difficult, challenging, eye-opening, discouraging…..  And at times, I wonder how much more my body can take.  I can’t go to college and pursue a career like other young people my age.  At this point, I can’t “work” because I have 2-6 doctor appointments every. single. week. 🙁  I often wish I could do “normal” things like other “normal” people.

 

But I also am filled with joy that I can share in Christ’s sufferings (1 Peter 4:12-13).  And I remember that the Lord has chosen this path for me.  I may not know the reason why in this life on earth, but I know that He is good, and I trust Him (Romans 8:28).

 

I can’t remember if I posted this before, but one of my close friends shared this beautiful quote with me—it sums up everything perfectly:

 

“Perhaps there is also something in your life causing you to question God. Do you find yourself saying, ‘I do not understand why God allowed my loved one to be taken. I do not understand why affliction has been permitted to strike me. I do not understand why the Lord has led me down these twisting paths. I do not understand why my own plans, which seemed so good, have been so disappointing. I do not understand why the blessings I so desperately need are so long in coming.’

 

Dear friend, you do not have to understand all God’s ways of dealing with you. He does not expect you to understand them. You do not expect your children to understand everything you do—you simply want them to trust you. And someday you too will see the glory of God in the things you do not understand.” ~J. H. M.

 

This awareness week is halfway over, but every blog post I write, I want to continue bringing awareness to this progressive and terrible disease.  So many babies, children, and adults suffer with mito, and I know there are many medical professionals and people who haven’t even heard of mito!  Before this journey started, I never even knew there was a disease like this where you can look so normal on the outside but have so much wrong on the inside..

 

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P.S.  I mentioned in my last post how I started experiencing an atypical headache.  Well, it’s still not gone and is going on 3 1/2 weeks now. 🙁  On top of that, my eyes have been oscillating (nystagmus) for more than 2 weeks, and it has never lasted that long!  I get ever so nauseated each day from all of this and feel so unwell. 🙁  Something’s just not right, so I’m in close touch with neuro-ophthalmology, primary care, neurology, and pain medicine.  I have to get a brain MRI on Friday which will be my 20th MRI scan…  My doctors are trying to figure out if this is related to my mitochondrial disease or something new.

 

P.P.S. I found out that my muscle biopsy tests through Baylor haven’t even been started yet. 🙁  They’re still waiting on insurance authorization.  Waiting is so hard!

Post written byKerissa

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This post has 4 comments

  • Kerissa, you are an amazing young woman! Thank you so much for posting this and educating us on this condition. I wanted you to know that Mike and Peter pray for you every morning during our home schooling. Your perseverance and positive attitude in the face of such trial is a huge testimony to them as it is to all of us. I am so thankful for your sake, and our own, that this life is short and so our troubles, which seem to last forever when we are in them, are only temporary and that in eternity we will be free from sin and free from illness and sadness and pain and struggle. Praise the Lord!

    • Aww, thank you, Mrs. Eiles. 🙂 That means ever so much to me!! I’m so blessed by everyone’s prayers and caring comments. And yes, I am SO SO thankful to the Lord that one day, I will have a new body free of disease and pain when I spend eternity with Him!

      Love, Kerissa

      P.S. Please tell Mike and Peter ‘thank you’ for praying for me. That is super sweet of them!! 🙂

    • Judi Mosteller
      says:

      Yes, I agree with the above comment that you are an amazing young woman. Your life is such a wonderful testimony of grace and endurance. We continue to pray for you. Your perspective of your sufferings is so mature and honors Christ. Living in a fallen world there are many diseases and illnesses that have entered in that we know nothing about or understand. Thank you for educating us about this one that seems so all-encompassing in its effects on the body. May God bless you with peace, perseverance, pain free moments, protection, provision, healing. May you know His comfort and strength to carry you through each day and sustain you greatly.

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