5 years.
Well, guys, I beat my record for the most appointments in one month. I ended up having a total of 19 appointments this month, not 16 like I thought it’d be.. This month wore me out..
On June 4, 2011, I graduated from high school. June 4, 2016 is just around the corner. It will be 5 whole years since I graduated… 5 years. It’s hard. I’m still doing the same thing—seeing doctors, going to weekly appointments and physical therapy, taking numerous medications and supplements, sleeping 16-18 hours a day, hooking up to IV fluids every day and IV nutrition every night, and fighting this battle with mitochondrial disease and a whole host of other conditions.
I wish I didn’t have to sleep so much…I wish I could go to med school and become a physician…I wish I could get a real job…I wish I didn’t have to see doctors every week…I wish I could get off of TPN (IV nutrition)…I wish I could do something other than fighting mitochondrial disease every single day.
But you know, I’ve learned that the Lord chooses different paths for every person. And this is the path He specifically chose for me. I tell you, it’s not an easy path and I wouldn’t wish it on anyone. But with this journey, the Lord gives me hope with His many promises. He says in His word that He will never leave me nor forsake me. Romans 8:28 also tells me, “For those who love God all things work together for good, for those who are called according to his purpose.” That’s what I hold on to. I won’t have answers to all of my questions in this life until I see Jesus face to face, but until that happens, I will keep persevering. I want to bring Him honor and glory!
Last Monday I saw the Palliative Care doctor. It was a long appointment discussing my whole story, all the symptoms I experience, and the headaches/neuropathic pain I deal with daily. We mainly went over how to manage the chronic pain better and how to best coordinate all of my care with my numerous specialists.
The doctor is very kind and caring.
He’s had mitochondrial disease patients, but he said they were never as bad as me. He spoke with the head of the OHSU Internal Medicine board to see if a new primary care physician can be found for me who knows more about mito and can potentially coordinate all of my care better. My current primary care doctor is great and is always helpful in referring me to other specialists, but she doesn’t know enough about my conditions since they’re so rare. The head of the Internal Medicine board suggested I see this doctor who is board-certified in both pediatrics and internal medicine. That means she’s a pediatrician and an internist—she works at Doernbecher Children’s Hospital and OHSU! She knows about mito which is a plus. Her schedule is booked out so I can’t see her until July or after.
Regarding the pain, we discussed all the different pain management options—oral meds vs. IV meds, what types would be good, etc. My complex case makes it hard since pain meds worsen GI dysmotility. As a trial, the doctor is having me try a combination of pain meds that are liquid instead of pill form. He wants to see if putting liquid meds through my j-tube can be absorbed better and faster. The IV route is a last resort since that would mean being hooked up to yet another pump continuously. He has been talking with my pain doctor, and they both think a long-acting pain med would be good to try if this trial isn’t helpful. Long-acting meds are heavy-duty, so I’ve been researching/comparing them. I also hope to discuss this more when I see both of them the end of June.
Last Friday, I received my final IV iron infusion. My blood counts were slowly creeping up, but unfortunately, they have dropped and I’m still anemic.We’ll see what my levels are this week..
This Thursday, I have a follow-up with my nephrologist to discuss the worsening hypomagnesemia. Still dealing with disabling muscle cramps from the low magnesium. And right after that appointment, I have my 19th MRI for the suspected hip labral tear.
The following Monday, I see the Orthopedics specialist to go over the MRI results. Praying the results help my doctors pinpoint the exact site of the hip pain!
“For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us.” Romans 8:18
