Happy 1st of May!
Kerissa • May 2, 2013
- Alpers Disease
- Barth Syndrome/LIC (Lethal Infantile Cardiomyopathy)
- Beta-Oxidation Defects
- Carnitine-Acyl-Carnitine Deficiency
- Carnitine Deficiency
- Creatine Deficiency Syndrome
- Co-Enzyme Q10 Deficiency
- Complex I Deficiency
- Complex II Deficiency
- Complex III Deficiency
- Complex IV Deficiency/COX Deficiency
- Complex V Deficiency
- CPEO
- CPT I Deficiency
- CPT II Deficiency
- KSS
- Lactic Acidosis
- LCAD
- LCHAD
- Leigh Disease or Leigh Syndrome
- Luft Disease
- MAD/Glutaric Aciduria Type II
- MCAD
- MELAS
- MERRF
- MIRAS
- Mitochondrial Cytopathy
- Mitochondrial DNA Depletion
- Mitochondrial Encephalopathy
- Mitochondrial Myopathy
- MNGIE
- NARP
- Pearson Syndrome
- Pyruvate Carboxylase Deficiency
- Pyruvate Dehydrogenase Deficiency
- POLG Mutations
- Respiratory Chain
- SCAD
- SCHAD
- VLCAD
Whew! All THESE names are the many types of Mitochondrial Disease (and no, I didn’t memorize all this… ;). This, my friends, is what I’m going up against. : I have a long road ahead of me. I may have one of these or several (as some go together)… But nothing is impossible with God!
Still waiting on blood work… The doctors are first checking my mtDNA for deletions/duplications.. Then, if that’s normal, they will keep going deeper in..
Next week, I have an appointment every single day except Friday… It’s gonna be busy!! I see my neurologist on the 8th, and we’ll go over the Cincinnati trip and what to do next.
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Now, on to more light-hearted stuff.. Our visit to the Creation Museum (by Answers in Genesis) on our last full day in Ohio was an amazing experience! If you’re ever in Kentucky, I highly recommend visiting it because it won’t disappoint! The Creation Museum not only explores the 6 days of Creation. We learned about fossils, Noah’s ark, evolution, Jesus, the ice age, and a whole lot more! Plus, their Dragons bookstore was soooo much fun! I bought this super cute turtle necklace that has a hematite stone on it!
Enjoy the following pictures!! Sorry that a lot of them are out of order!
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Andddd….because I have pain and lots of other conditions, it’s only appropriate that I take a picture of this. |
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Adam, Eve, Cain, and Abel |
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| This exhibit actually displayed some of the first Bibles to be printed! But no cameras were allowed in it, so I had to take a picture of this. |
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| getting ready to eat lunch in Noah’s cafe! |
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| It wasn’t a very sunny day, and it was too cold to walk around in the gardens. But doncha think the landscape is beautiful? |
Dear friends, I just wanted to thank you all so much for praying for me during my abdominal surgery on August 6th! 💚 All of your messages/emails really encouraged my heart! If you missed my previous post, I had to have an unexpected surgery to take down the jejunostomy tract and repair an enterocutaneous fistula (a rare complication from having a j-tube for 12 years). I truly felt your prayers, and the Lord answered so many of them as well! 🥹 My surgeon only had to remove about 1 1/2 inches of my small intestine which is great news! I was in the hospital for 4 days because my blood pressure was low and pain control was rough (it’s a long story, but pain management is complex due to a specific medication I take daily at home..). But aside from that and having an allergic reaction to the surgical glue, I’ve been healing well. Thank you again for praying!! God has been so faithful throughout this journey. I got a visit from my sweet foster nephew when I was in the hospital (2nd picture)! 🥰 I can’t wait until I can show you his face—he’s so adorable. 🩵 I’ve mentioned this before, but an important medication I take causes severe insomnia (still not falling asleep until anywhere between 3 AM-9 AM). 😞 But I saw my naturopath this past Monday, and she’s going to treat me for suspected cortisol spiking up during the night (which disrupts the body’s circadian rhythm). I’m thankful for the wisdom God gives her, and I’m excited to see if this treatment will help! It will take 6 weeks to see if there’s any benefit, but I first have to specially order it..
"God is our refuge and strength, a very present help in trouble." -Psalm 46:1
Hi, friends, I thought I wouldn’t be posting for a while since I’ve been doing really well, but I’ve hit a bump in the road again and would appreciate your prayers. 💚 This past Tuesday the 21st, after nearly 12 years living with it, I had my jejunostomy tube removed completely. I thought it was going to be a simple process and that the stoma (hole) would close quickly within 30 minutes like they said. That didn’t happen, though, as the stoma started draining a ton! I couldn’t even leave the lobby and had to go back up to the clinic on the 8th floor to have an ostomy bag placed to collect all the small intestinal digestive juices that continually drained. Unfortunately, I’m experiencing a very rare complication called an enterocutaneous fistula. 🥺 I’m disappointed this is happening, but I’m not exactly surprised since my whole medical case with Mitochondrial DNA Depletion Syndrome has been rare from the very beginning.. I also don’t heal well due to connective tissue problems from Ehlers-Danlos Syndrome (case in point: my port site issues back in May when I had to have a new one surgically placed on the other side of my chest).. 😞 The clinic told me to keep emptying the ostomy bag and monitor the output. It wasn’t a fun 2 days. This whole process has definitely made me so grateful to God that I’ve never needed something like an ileostomy! TMI, but I lost almost a whole pound of fluid because so much was gushing/spurting out of the stoma every time I ate or drank. Losing so many electrolytes, I started experiencing symptoms of dehydration—weakness, high heart rate, and headaches. So yesterday, I had to go back and see the surgery resident who basically placed another j-tube (it was so painful again!). 😭 This is a temporary “plug,” and I’m bummed to say that I have to go to the operating room to have the jejunostomy tract taken down and the fistula repaired. This surgery will be happening as early as next week (it depends on my surgeon’s schedule).. She said it will be complex, especially because adhesions (scar tissue) form when a person has multiple abdominal surgeries.. I lost count what number this surgery/procedure will be, but I do know I’ve had more than 20! 😞 I know God is with me wherever I go and will supply me with the strength to endure yet another surgery like he always does. But, I’m still sad that I have to have more incisions added to my body. I shared the lyrics to this song before on an old blog post (the song is called It Is Well With My Soul by Matt Redman), but it immediately came to mind again when I was thinking of scars. As the song below said, it’s a reminder to me that my scars can be a testimony to others of God’s grace in my life and how he has brought me through every single pain and sorrow. In the Bible, I’ve always thought it’s so neat that Jesus still had his scars after he rose from the dead—he had a new body, and yet, his scars were still visible. ❤️ Our scars are a sign of grace in our lives Oh Father, how You brought us through When deep were the wounds And dark was the night The promise of Your love, You proved Now every battle still to come Let this be our song It is well (it is well) With my soul (with my soul) It is well, it is well with my soul
