Hey!! Glad you are here. I truly hope my journey will provide you comfort, entertainment, inspiration and a laugh along the way. I am writing this in March of 2018 though the first few parts are my experiences before, up to and just after my diagnosis with Multiple Sclerosis.
Yes, I am currently un-diagnosed, in medical limbo land. A world I like to call tortureville. Here in this stage of self-diagnosing, because the Docs aren’t really taking me seriously, I turn to Google for as much information as I can process (and then some). I know I have 30 different conditions none of which have a cure, or I have none of them and just need a vacation and a bottle of scotch.
After being diagnosed with Fibromyalgia over 20 years ago and resigning myself to the fact I would have pain and fatigue every day, I had found my new normal. Albeit, limiting, frustrating and hard to accept, I found happiness, continued raising my amazing children, went back to school and continued working when I could. Life goes on, right? You fight to find normalcy and pleasure, because its there, so close, seemingly unreachable and completely possible. I began to realize that I was a superwoman with limitations! What a pill that was to swallow! I also grasped that every moment I felt good was a good moment and one to enjoy!
But then, one day driving home, my arm stopped working. Yes, just stopped working. Was told it was a pinched nerve. 3 months later I had an arm again. Ok. Sure. I’m alright with that. However, I noticed that my fatigue was worsening and after a pretty nasty surgery, I just didn’t bounce back. So unbelievably tired. Less hours at work, less lifting, less outings with the kids… new normal again.
Over the next few years, I had… episodes…periods of time where I would hear things like “you are under too much stress, that’s why your legs feel so heavy” and “You need to rest more, that’s why you are falling asleep on the toilet” and the best one…”urinating 16 to 20 times a day is a part of aging”. Really? Just really?? My Docs and I had a love hate relationship… I loved to hate them. They became an extension of a pen to write the prescriptions I needed based on my own research, and they printed off the requisitions for tests I was sure would reveal the answers to my daily agony. Too bad, so sad. My high cholesterol despite being underweight, and slightly off Thyroid panel, did not provide a diagnosis that I was sure I had.
Honestly, I was going insane. I kept busy as a single Mom to 4 children, one having multiple special needs, managed to keep my world from crumbling around us by enjoying my children and my dogs. Behind the scenes I was dying inside. I couldn’t cry for fear I wouldn’t stop. My thoughts were plagued by fears that I was dying, that I had a rare cancer eating my body, or that I would keep getting worse and worse without answers and they would simply commit me.
I knew I had to stop! Pull up my big girl panties and attack things in a much more constructive way. My free time was absorbed with research that yielded more questions than answers and caused my growing anxiety to soar. I acted as if my panic and misery would somehow provide instant relief and startling knowledge that I didn’t have. Well that wasn’t going to happen. I needed to let go and move forward. So, I did. I …let…go. It was easier than I thought it would be really. Instead of freaking out about symptoms, I wrote them down then pushed them aside for later. I dove into my school work and my children’s lives even more. I wasn’t perfect and I had days where my anxiety took over and ruined my composure. But overall, I was managing well.
Things got pretty sticky when I lost feeling in my left leg and arm while driving with my kids across Canada. Oh boy! Was that fun! That episode brought about a few months of crippling symptoms, the return of my all-encompassing panic and the brain and spine MRI I needed. A few new pieces to my psycho puzzle!
And not what I expected at all. I will be honest. I think I lost a piece of my sanity during that few months. You see, my Father was dying of Mesothelioma, my Son was having a new shunt put in his brain to drain the extra fluid into his stomach, I now have multiple issues with my back and the words… Multiple Sclerosis has been said out loud.
Join me next week to continue my journey with Multiple Sclerosis.
This has been an interesting week.
When I was a kid I often thought about becoming a Doctor. I started having migraines, severe fatigue and pain in my joints at age 10, I soon gave up my medical career desires. Not only did I have little faith I could physically handle Med school, I also developed quite a dislike for most medical professionals.
Sadly, that dislike has not changed much since.
Here I am. With the diagnosis of MS banging around in my head. All I have is a radiology report that says something like…..’Highly suggestive of demyelination disease…further studies with G contrast recommended…” My regular Doctor looks at my MRI report (That only took me ten freaking years to have done) and says he thinks I may have Multiple Sclerosis as I have multiple small lesions in my brain. Well then. I guess that would explain a lot wouldn’t it?. To be honest, I feel way more relief at the possibility of MS being the culprit behind my new symptoms, than I feel fear of the actual diagnosis. However, my relief and any other emotion I may have been feeling were soon to be completely replaced by anger. Apparently, the MS Neurologist my Doctor referred me to, took a look at my MRI and quickly dismissed it! What the hell! I have a report in my hands and a plethora of crazy ass symptoms and the one specialist I need to see, thinks I am a lunatic. Just peachy.
Over the past few months I have added some lovely symptoms to my list. I am now having bouts of such severe fatigue I am dozing off almost every time I sit down. My legs feel like someone has strapped 100 lb weights to them and going up stairs is like wading through a pool full of honey…. And I can’t pee. Well, I can pee… but I have to sit forever to get it going which is really fun when I feel like I need to pee 15 to 20 times a day. Nope, not an exaggeration. I’m really having a tough time accepting this as my new normal. Can this seriously all be Fibromyalgia? I don’t feel like that is it. I feel like there is something more. The band of intense pain around my rib cage feels like I’m wearing a bra of burning hot crow bars and I frequently lose feeling in my toes and fingers. My kids are worried about me. As a single Mom, I don’t have the luxury of asking someone else to do my housework, errands and take care of the kids. I will not go into the gory details of my struggles with finances, my Son’s severe medical conditions, the degree I am currently trying to complete, the death of my Father, the loss of other family relationships and my serious lack of external supports….no, I wont. Because right now, what I want to know, is this my new normal? And how the hell am I going to handle this.
I am not going to accept that I feel weak like a newborn foal, unbalanced like someone who has way too much wine, fatigue like a mother with quintuplets and terrified like someone who has been transported alone to the middle of a dark and unknown forest. No. I am not. I want answers. I want tests. I want to know why my left leg doesn’t respond to my brain and why I can’t process simple things. But! But, I have to take it one step at a time. I have to enjoy the beautiful moments all around me.
Meditation isn’t working quite like the slim, muscular and totally Zen guru’s on TV. But, I do find it helps to take the punch out of my panic and growing depression. It does help me notice more things around me and helps me to find peace and excitement in each moment with my children. I can do this. I will do this.
Back to my Doc I go. Hey Doc…what is happening to me? Don’t pass me off. I am important. I deserve answers.
My Doc sends me to a regular neurologist after saying my bloodwork is great and I’m a very healthy 40-year-old besides super high cholesterol despite being under-weight. Neuro says all my symptoms are related to Fibromyalgia and someone who lives with far too much stress. Wow! So, everything I am going through is the result of a highly stigmatized disorder that has no cure, no treatments that most Doctors think is all in the head.
Well… I can lose my mind, scream, cry, rage, look for a new Doctor or I can accept the situation for what it is and carry on. Thankfully my life is insanely busy, and I have little choice to get through each day the best I can. The best news is, I have awesome kids who need their Mom and make it all worth it.
I will continue to document my symptoms, see my Doctor to request more tests and more referrals and I will accept that I may not have all the answers now, but I won’t give up. In a few weeks, I am moving to a different province. Me and my boys. Off we go to a different life, a new life, with a new mindset. I can do this. I will do this. Although the diagnosis of MS fits, no one else agrees. So, to the back of my mind the diagnosis goes.
We are back in Alberta!
Flying out here was a good choice but… wow… what a trip!
I wont bore you with the perils of a cross-country move with two teen boys, 2 hughmassive dogs, 3 cats and far too many personal possessions. Crazy!
Now to get settled and find a new Doctor. Ha! That’s not so easy. I sure hope whomever I find believes in Fibromyalgia and wants to explore my new symptoms. I now have pressure in my throat, problems with my teeth and my restless leg syndrome is more restless body syndrome. Sleep is a rare state in my world.
Found one! a new Doc. Interesting first visit. I gave him all my paperwork and a typed list of my symptoms, he says “So you have MS and Fibromyalgia, high cholesterol and cant sleep?”
I said “Ummmm…. Why do say I have MS?”
” Occam’s razer dear… your mri says MS… your symptoms say MS… you have MS”
You know that feeling you get when you are in shock, the tingles up the back of your neck, queasy stomach, blood draining from face feeling… ya, that one. I couldn’t speak. Its not like I didn’t contemplate the idea that I had MS. Sure I did… lots. But, I still couldn’t fully accept it as my actual reality. I still couldn’t. This Doc doesn’t know me. He isn’t a Neurologist and sometimes the horse that looks like horse is actually a zebra. Occam didn’t know everything!!
“I admit that it could be MS, but dont I have to have more tests? Isn’t there a ton of specific criteria I have to meet?”
“You have MS. But I will send you to the MS Neuro here at the MS clinic.”
There it is. This is what I want. To be referred to someone who can run the necessary tests. To tell me I am not crazy. Why am I so scared? Why does it feel like things are moving too fast when its been years of unexplained symptoms and agony?
I will wait and see if the MS clinic will see me or dismiss me.
In the meantime… I need to focus on organizing my new life with my new limitations, ever-increasing limitations… Re-apply for disability. That’s fun…. not. I feel humiliated, defeated, lost. I used to have a career! I mattered. I was an advocate, I made a difference in the lives of so many under-served people. I was the voice for those who didn’t have a voice. Here I am now… someone with no voice. Someone frowned upon. A burden, an inconvenience. I am struggling mentally right now. I feel inadequate. I think its time to reach out. Shouldering this alone, while fighting to stay strong and brave in front of my children, swallowing what little bit of pride I have left, is taking a toll. I have a few friends but no real connections and I have trouble talking. I think its time to see a professional.
Ironic isn’t it? I am completing my degree in psychology and Im looking for a psychologist. At least I know what to look for.
Gotta find the humor on life.
Then it happened… The call i did not expect to receive. The MS Neuro wants to see me and she has already booked me an MRI!
Im being taken seriously!