Keeping on.

It’s been over 3 weeks since I last posted, and again, there’s so much to tell and to process.

The following day, my pain dr. performed a bilateral lumbar sympathetic nerve block to calm down the pain in both feet and try to prevent a CRPS/nerve pain flare-up.  After the procedure, I had to be monitored for a little while because I was so sleepy from the meds and my blood pressure got pretty low.  Thankfully, the block did help to prevent the CRPS from returning.

On Friday the 22nd, I saw my ENT (ear, nose, and throat) dr. to follow-up on my swallowing.  Lately, food/liquid has been going down even before I swallow which causes choking.  So my ENT dr. said I’m experiencing something called “premature spillage.”  This is caused by a weak tongue that also doesn’t have good swallowing coordination anymore. He said the tongue is trying to tell the body that it’s too tired to eat.  All this is due to the mitochondrial disease worsening..  He said not much can be done for it, but he did refer me to the swallowing therapist.

I had an appointment with my neurologist recently to go over the EEG results.  Again, it’s abnormal in that it shows a lot of generalized slowing all over my brain which indicates “diffuse cerebral dysfunction.”  But thankfully, the whole body jerking I have during the day and especially at night is not caused by seizures.  She said this jerking (myoclonus) can be caused by a number of different things (brain, spinal cord, etc.), but there’s no way to know for sure where it’s coming from.  Since it disrupts my sleep, she prescribed a very strong anti-seizure medication which can also be used for myoclonus.  I started it a little bit ago, and I think it does help.

I saw my physical medicine dr. this past Monday to follow-up on the back pain, osteopenia, etc.  I now have my spinal brace, and it feels good to wear it every now and then. Lately, my right shoulder has been snapping and popping a lot when I move it. I know I don’t post much about EDS (Ehlers-Danlos Syndrome), but it does continue to cause problems/joint pain.  He said these “subluxations” are stretching the joint capsule in my shoulder which is not good.  My shoulder is too loose from EDS… So he told me to be extra careful when I dress, move, etc.  He also ordered cervical (neck) spine x-rays to check up on my cervical instability since it’s been 3 years since they last checked.

This past Tuesday, I had a 2-month follow-up with my PCP.  She is just so thorough and caring!  I am so blessed to have her oversee/coordinate all my medical care. We talked a lot about my upcoming surgery and how that will go with all my other medical issues.  She also wanted to know how I’m doing mentally because she knows that so many doctors often just take care of a certain part of my body and not the body as a whole.

Unfortunately, the medication I tried for my renal magnesium wasting didn’t help at all. Really disappointed that my Mg level continues to be lower than it was in the past and that the medication didn’t benefit.  This means I continue to need 8 whole grams of IV Mg a day.

Next week, I see my pediatric urology surgeon to go over the big surgery.  I also plan to ask her if she can possibly change my j-tube while I’m under anesthesia so that I don’t have to be awake for it when it does need to be changed.  *Side note: recently, my tube accidentally got ripped out of my abdomen (it got caught in a folding chair after I got up from sitting), and it was the worst acute pain ever!!! :’(  The balloon that holds the tube in place was still intact.  This meant the balloon which is bigger than the hole got yanked out of a tiny hole! It bled so much, and it was extremely difficult to insert it back in.  Tears automatically came from the severe pain.  And the area is still tender to this day. This is the first time that happened, and I’ve had this tube for 3 years!  I now have to use a feeding tube clip on my clothes to hold it up so that it doesn’t hang.*  So if my urology surgeon can’t change it, my PCP is going to ask if any of the pediatric general surgeons can replace it during the bladder surgery.

This weekend is my 25th birthday, and I know it’s only by God’s grace that I turn another year older.  I look back on being 24 years old, and I have to say, it’s been the hardest year yet mito-wise. Turning 25, I don’t know what will happen, but I do know that the Lord will be with me the coming year!  And that is such an encouragement.

P.S. I love this quote below! I’m just so thankful that my body (fighting mitochondrial disease every single day) won’t be like this for forever.  And it is only because of what Jesus did for me on the cross.