REAL, FRUGAL, HEALTHY, and FUN!!!
I’m struggling lately, so I thought I’d open up about some things. I want to share what’s been going on with me, with you. Initially, my thought was that I should wait until I knew all of the details, solved the problem, and could tell you just exactly how you could possibly do the same. Lately, though, it seems one can of worms leads to another, and while I wish I had some idea how to solve things, at this point, I don’t even know exactly what the problem is. It’s been very discouraging.
Let me start by telling you a little bit about how this can of worms was opened. For quite awhile now (I can’t remember exactly when it started) I’ve had a frustrating bladder. I experience urgency almost all of the time! When I try to empty my bladder, even at it’s fullest, it just really does not want to empty. I started working with a urologist a little over a year ago. He tested my bladder using various methods. I’ve had my bladder pumped full of all kinds of things. I’ve had a visual examination of my bladder by means of my feet in stirrups and a tool stuck into my urethra which somehow enabled my urologist to visually check for problems, even through that itty bitty hole. I’ve had catheters inserted up the front and up the back so they could fill my bladder and measure pressure as I attempted to pee.
Through all of the testing, they were able to determine that I retain urine, my bladder does not contract, but rather it relies on my abdominal muscles to squeeze it. Still, they could not determine the cause. I was sent for an MRI. They wanted to rule out MS (multiple sclerosis). While my MRI did not suggest MS, it was the opening of the can of worms.
They did an MRI of my dorsal spine, cervical spine, and brain. I have the printouts from it, so I’ll share the findings with you. Of my dorsal spine, the conclusions were that I have an unremarkable thoracic spine. Of my cervical spine, it was concluded that there is a reversal of the normal lordotic curvature at the C4-5 level. Disc desicacation and broad-based disk bulges are present at C4-5 and C5-C6 levels without neural foramina or spinal canal stenosis. Focal high signal seen within the posterior aspect of the C5-C6 disk could represent small annular tear. Now, for my brain. This is where it gets interesting. Asymmetric volume loss typically within the superior aspect of the cerebellum and vermis. There is no associated volume loss or abnormally identified within the brainstem. No definite supratentorial volume loss. These findings can be seen in association with chronic use of ETOH, and exposure to long-term antiepileptic drugs. One must also consider forms of multiple system atrophy including hereditary cerebellar atrophy and progressive non-familial adult onset cerebellar degeneration. MSA can be associated with urological disturbances due to autonomic failure. Recommended referral to Neurology.
I too these reports, including a disk of the imaging back to my urologist. He put me at ease. He told me that it was probably nothing, and that I probably just have a lazy bladder. He recommended implanting a device near my spine to help me pee. Basically, when you feel the urge to pee, you push a button on a remote, and the device helps stimulate the nerve to contract the bladder. You can learn more about how it works, here. Before implanting it, however, he referred me to neurology. Once the device was implanted, I would no longer be able to have an MRI. Though he believed everything to be fine based on the MRI, he wanted to be sure. He also wanted to give the neurologist the opportunity to do any additional or repeat MRI’s that they may want to do.
I went to my neurology appointment just a couple of weeks ago. I was expecting to go and have him tell me that no everyone’s brain looks just like the pictures in books; I’m fine; Have a nice day. I was truly expecting to have an unremarkable appointment.
It wasn’t what I expected. He said it’s not normal. He said it’s not common. I asked him if something insignificant could cause it. He asked what I meant by insignificant. I asked if it could be caused by something that wasn’t really a big deal. He said it wasn’t likely. He named several conditions that could be the cause. None of which sounded pleasant. You can learn more about conditions that can cause cerebellar degeneration, here.
He had me do some blood labs (quite a bit, actually) and I had to collect my urine in a jug for 24 hours. The results are not back yet. If the results don’t solve the mystery as to why my cerebellum is atrophying, the next step will be a spinal tap, and finally genetic testing.
I’m not sure exactly what the expected timeline is on everything. Waiting for answers has been difficult. I hate to say it, but it’s made me a little bit depressed. Healthy living is my passion. It’s what I love. I love to learn about it, and I love to practice it. I’ve really enjoyed sharing it with everyone through my blog. Finding out about my cerebellum was really hard. It made me question everything about healthy living. It made me question whether or not I have anything of value to share. I wasn’t as excited or even comfortable posting on my blog. It’s still hard, right now. I’ve still been cooking and baking the same way I always have, but I haven’t been writing things down. I haven’t been taking pictures. I’ve kind of shut myself in a bit, ashamed that my lifestyle isn’t some magic cure-all. Not completely, though, as I’ve been desperately fighting to not let this drag me down all of the way.
As I mentioned, I’m continuing to eat a whole-foods, clean, paleo-based diet. I’m keeping up my workouts, too, but not on my own. Because I’ve been dragging, I’ve set it up so I’m not relying on myself to keep me on track. Working out at home, on your own requires a lot of self-motivation. Something I normally have. Unfortunately, I’ve been a little down lately, but am lucky that I recognized it, and I’ve set up workouts where I am not on my own. I go to kickboxing twice a week. It’s wonderful stress relief, and is great for muscle endurance, balance, and coordination should my cerebellar degeneration begin affecting my muscles. I’m also meeting my husband at the gym to lift weights three days each week. It’s great stress-relief, benefits both of us individually, and as a couple. I’m also trying to keep up on my yoga, but I must confess, I did skip it last week.
I have it in me to easily become depressed and down if I allow myself. I also have it in me to fight off those emotions and conquer. I’m lucky that way. I’m just going through the motions and feelings that are brought on when one learns that there is something wrong with them which is potentially quite serious, and potentially life changing. It is a humbling reminder that a healthy lifestyle is not a guarantee, and that there are and always will be things that are beyond my control. I’m reminded that a healthy lifestyle does not prevent every ailment, or guarantee quality of life. I know that I feel best when I do maintain a healthy lifestyle. I know that I’m better off because of my healthy choices. I do feel like it will be easier to deal with my state of health once I have a solid diagnosis and can do more specific research to better understand what I can do for it.
I’ve made an appointment for a full physical with my primary care physician this next week. My last primary care physician moved (we’re military) and I’ve never met my new one. I thought it best to have my primary care physician tracking all that’s been going on. Also, I thought a good overall physical exam would be good considering everything that’s come up. I’ll be sure to post about it.
I know I used to always post that cooking, baking and creating recipes is my stress-relief. It still is. However, I’ve just been doing it for myself this past week. I haven’t pressured myself with documenting, photographing, and blogging about it. I’ll be sure to post at least one recipe this next week. In the meantime, I’ve been crafting a lot in the evenings. It’s been a great way to keep my mind of things. When things feel as though they are falling apart, it feels good to see something coming together. It’s a matter of focusing on the positive, accepting the negative, and facing it with strength.