Just when you think you’ve reached your breaking point with doctor’s appointments for your child with special needs, you find yourself needing a doctor. You can read Riley’s Story here. Then you get referred to another doctor… and another… and another… and another… and another. Well, hopefully, you haven’t needed that many, but unfortunately for me, I have. The irony on that, we’re still not sure what’s going on.
You’ve Got No Feelings
Back in the first week of October of 2017, the left side of my face went numb. Think novocaine from the dentist kind of numb. The entire side of the left face from cheekbone to jawline. If that wasn’t bad enough, at the worst point I had slight numbness up to my brow line and tingling in the back of the head.
Hot mess coming through! Yup, that was me, a big ole hot mess. I went to my PCP doctor. She prescribed a very low dose of medicine and referred me to a neurologist. I’m very familiar with the pediatric neurologists all up and down the east coast of Florida from the Treasure coast south. Riley’s kind of a big deal. I was also sent to a hematologist for anemia.
The neurologist bumped up the dosage and referred me to an ENT doctor, and MRI of the brain. The MRI of the brain came back and the neurologist says “your brain looks remarkably well for a person of your age.” Come on now! I was only thirty-freakin-eight at the time. She then sent me to for an MRI of the neck and spine, which insurance denied. You have to have an ultrasound of the neck first, they said. It would be fun, they said. Doctor’s know best, right?
Did I mention all the blood work? I know I mentioned the anemia, but my lord did they take a lot of blood for someone who is anemic. It seemed like I was getting tests every other week.
Between vampires taking my blood quite frequently, the scheduled tests, the fighting with insurance, they finally found something.
Queue the dramatic music….
On the ultrasound, there was a 3cm mass on the left side of my neck. Great way to start the Thanksgiving weekend. The tech said it was probably just an enlarged lymph node and not to worry, so I happily overstuffed my face and tried to drown my sorrow in tryptophan. Then I saw the ENT and pretty much had a panic attack.
I went in for the initial visit. He looked me up and down, peered down my throat, wrapped his hands around my neck, felt the mass on the left side and starting spewing off things about nerve sheath tumor, surgeries, removing nerves from somewhere else to replace the damaged one. I was sitting there hearing words without listening, I shut him out. How could he possibly know exactly the cause from a grainy ultrasound? He must be as good as House, to know exactly the cause of (almost) all my health problems. Doctor’s know best, right?
Say it Ain’t So!
Then I said, this numbness happened to me about 6 years ago, just not nearly as bad and didn’t last this long.
“Well then I’m completely wrong and the person who was taking your medical history should have gotten that information from you.” My bad. Seriously. I felt like I had just been launched out of a catapult and just when I was about to hit the ground woke up from a dream to realize, hey, this ain’t so bad.
Now I had to go for a CT scan to get a better image of what was going on. CT scan came back clear. Also had an MRI of neck and spine, that was clear. And we’re into a happy new year.
Yeah, about that…
New Year, New You… Maybe Next Year
New year, new you. I started a Keto diet. Lost about 20ish pounds, was doing pretty good. I also started getting iron infusions. They said I’d feel like a brand new person. Nope, not me. I was on gabapentin. My life sucked.
It really didn’t, but that drug seriously made me crazy. I started getting angry all the time. There I was, not being able to put up with anything, all I wanted to do was be alone, and I cried a lot. I hated myself. I kept hearing myself say “I hate my life.” It said it way too many times to count. It was said it so frequently it became normal, it was acceptable. Habits are easy to create, usually if they’re bad and really hard to break.
Check out my 40 by 40 post, in case you’re in the mood to read about other habits I can’t seem to shake.
Oh, Sugar Sugar!
For instance, I love sugar. I love caffeine. I love bread. I love bread. I love it so much, I had to say it twice. Keto is very strict. If you’ve ever considered it or read about it, you probably know how difficult it is to maintain. I didn’t really well for a couple months, basically doing low carb, but not full on keto. I saw success in weight loss, but I still hated everything.
I stopped taking the gabapentin a few months ago. Life has been much better, but that voice still sneaks out every once in a while and says “I hate my life.” I don’t hate it… at all. I love so much about it, and the people in it. I’m truly a blessed person, however, medication can do some serious damage. And recovering from that damage isn’t always a quick recovery. I’m spilling my guts here to let you know that if you’re going through something similar, stay strong. It’s not an easy path to walk, but we can do this.
Back to my medical journey…
My hematologist sent me to a GI to make sure that the blood loss is just a natural occurrence from being a lady, and not something in GI tract that may need attention. And again, we’re good to go. I also had more blood tests for the crazy amount of enlarged lymph nodes. Negative!
Process of Elimination
I’m finding a lot of times in the medical field, you tend to eliminate a lot before you get answers, if you get answers. The good news is that we’ve eliminated pretty much any possibility of anything other than natural blood loss, at least for the anemia. So yay!
Back to neurology… And referred to a rheumatologist. And a diet change. Eliminate sugar, dairy, and gluten from your diet she says. I laughed. Literally laughed at her. I didn’t mean to, but it happened. Very, very caring doctor, one of whom I actually like. I like food; I love sugar and bread! Oh, the bread!
You’ve Got to Be Ketoing Me
So back on keto, I go. That takes care of the gluten and sugar. I also follow a couple keto guru’s who do no dairy as well. My problem with dairy isn’t so much lack of milk, its the lack of cheese. I freaking love cheese. Ever been to Hop Cat? The other night we had cheese covered crack fries, cheese curds and I had beer cheese soup for my dinner. I’ve never felt so disgusting in my life, and I truly regretted those choices the next day. It was soooooo good at the time.
All cheese aside, I started keto this week. It’s been rough, I make mistakes. I’m also down 5 lbs.
I have more doctors appointments next month, and the following month. I’m still slightly numb, modified diet, more exercise, less stress, all changes that need to occur anyway. Why is it so hard though?
Why are making changes you know you need to make so stinking difficult? If someone can help me out with an answer on that, I’d really appreciate it. Pretty please?
Got Questions? We’ve Got No Answers
Still no answers since October of last year, and you know what? I’m ok with that. We’ll figure it out. I literally have 6 different doctors looking at this 6 different ways. Other than a little annoyance, it’s all good. I got this, and I’m pretty sure I don’t hate my life.
I know this was a long one. Thanks for hanging in there until the end. I really feel this was important to talk about. Life as a special needs parent is already complicated and we’re almost always 100% focused on what’s best for our child while we silently suffer and put off our own needs. It’s absolutely important to take care of yourself so that you have the ability to take care of your children. They need you, but more importantly, they need a healthy you.
I’m working on becoming a healthier me. Come, walk with me, talk with me, let’s help each other out. Take a gander over at Finding Your Focus for tips to blocking out the distractions.
And if you need a reference for a specialist or two, I’m your girl.