“Sometimes when we get overwhelmed
we forget how big God is.”
I’m more than halfway through my 5 weeks of IV iron infusions….but I’m still very exhausted. 🙁 I woke up at 4 pm today because yesterday was so rough—my blood sodium and magnesium levels were pretty low which made me so weak. My blood sugar yesterday also dropped…..my hands shook terribly from it, and I was nauseated. Because I had to wake up early for an appointment, the mito fatigue made me not be able to empty my bladder numerous times throughout the day which was just plain agony…. TMI, but I’m just being real here. 🙁 This is just a little of what happened yesterday.
My achy back and headaches are sadly no better, either, and I still have to take my really strong pain medication every single day that my palliative care dr. prescribes. I wish I didn’t have to because the side effects make my muscles heavy and everything gets so loud to my hearing. 🙁
I’m faithfully taking the CBD oil, too, but I haven’t noticed a single thing yet. 🙁 Will be having another phone appointment with the San Diego naturopathic physician sometime in the future to tell her how it’s going.
I had a follow-up with my palliative care doctor recently, and I learned that he is leaving OHSU in June after working there for 20 years!! I’m so sad that he’s leaving, but I’m happy for him as well—he will be working for a very famous surgeon/writer in Boston. His name is Atul Gawande, and I have read many of his books because they are so good!! My palliative dr. will be the director of the hospice/palliative program there. He wasn’t expecting to be chosen, but I’m not at all surprised because he is so very compassionate, reflective, and kind. I get to see him one last time in May. 🙂
My monthly GI appointment was last week. I lost weight, so I have to try and increase my tube feedings even more….he ordered a feeding pump backpack for me so that I can do tube feeds when I go out and not just do it when I’m at home. If I can’t maintain my weight, my GI dr. said he’ll have to increase the calories in my IV nutrition when I see him again next month.
I also saw my pulmonary dr. afterwards. He still thinks my chronic cough is upper airway-related versus lung-related, so he’s glad I see my ENT doc on April 10th. My respiratory muscle strength is stable, so that’s a praise. 🙂
My kidney/bladder ultrasound that I had recently shows that the pressure from my neurogenic bladder causes my right kidney to get dilated. I saw my urologist yesterday to follow-up on this, and she stated with great concern that I’m right on the edge for my bladder to stop working.. 🙁 This means I will have to have a major surgery done to protect my kidneys…..she doesn’t know exactly when I will need this. I hope and pray it happens years from now or never at all..
After waiting 2 whole weeks, my bone density results finally came back. Sadly, it shows that I have osteopenia (soft bones/bone loss)….no wonder I fractured a rib from coughing! I’m only 24, and I have osteopenia…. 🙁 But it’s due to a number of factors. It’s because I’m small, on IV nutrition, not active from the muscle weakness/fatigue, etc. My PCP wants my GI dr. to greatly increase the calcium in my IV nutrition, for me to keep faithfully taking my vitamin D, and I also might need IV calcium infusions and/or liquid calcium through my j-tube.
Mitochondrial disease is simply horrible. It affects too much. 🙁 I look so normal on the outside, and yet, on the inside…
Sometimes, everything seems so hopeless and gets more and more discouraging with bad news on top of bad news…..but Jesus is my Hope and Strength. He will ALWAYS be!! He knows what I’m going through. He cares. So I won’t let all this get me down!
John Calvin once wrote, “It is the word of God alone which can first and effectually cheer the heart of any sinner. There is no true or solid peace to be enjoyed in the world except in the way of reposing upon the promises of God.” So encouraging! 🙂