That F*@#ing Word

When I was growing up and my father was home, he often used to swear. Like A LOT. He looked like your typical biker, worked in the aircraft industry, ex-military and Christian. One might think that being a Christian would prevent the swearing, it did not. One of our favorite stories to tell was how I got in trouble for telling a kid to “Shut the F@#& up!” at recess in the fifth grade. I was trying to break up a playground argument, no one was listening, so I did what I knew. It worked, they stopped arguing, but a little boy ran and ratted me out. I was terrified of getting into trouble, so I tried to pull it off and tell the teacher that I didn’t say the f work, I said “puck”. That didn’t work, so I was held after school and they called my dad. What happened next is my main memory of my dad having my back, I don’t remember him doing it often, but this was our proud, weird bonding moment. My father told the teacher that if I felt the need to use that word then it was obvious that I felt that it was important. I learned that word from him, so no, I would not be in trouble.

That day, I was basically given permission to use the same words as my dad. There was no longer anything wrong with it. I was a tom boy, I didn’t care if it didn’t seem “lady like”. When our first son was born, I worked very hard to stop swearing, I was a stay at home mom and I didn’t want my eventual toddler running around saying F this and F that. Then I went back to work, in communications. I now worked at a job full of ex-military guys who now work in IT. “Shit, there went that plan”, surrounded by guys who swear I went right back to my old ways.

It’s weird, eventually, co-workers would move on to other companies and I eventually found myself with mostly new people. I was now that bad influence, when the hell did that happen? Nearly all the ex-military, cursing like a sailor colleagues were no longer there, and I was “swearing too much”.

My Multiple Sclerosis has made it so that I must work from home most of the time, which helps with swearing. I have been trying to lessen the amount I use curse words, mostly because of my boys keep asking me to, but I noticed some of the medical professionals are offended. I can laugh at the ridiculousness of what life has dealt me so not to be pitied from everyone, make awkward jokes about my life but dropping the F bomb is too much.

Why is that, why do some people look down on you for using “bad” words? There are a couple of words I won’t use, I find them offense and vulgar, if someone else uses them I may cringe, but I won’t look down on them. What is the point of freedom of speech if you can use all the words? I had a medical professional make a special note in my post appointment notes about my use of swear words. I am sorry, what the fuck is it to you if I swear when talking about MY life? It’s not like I was calling them names, yes when asked a question I found difficult I may have said “shit”, but I didn’t say “fuck, why the hell did you ask me that question?” why does it matter? Why does my word choice matter?

What’s your opinion, should freedom of speech not allow for the use of “vulgar” language? If not, should we also censor religious language since there is a separation of church and state? Where’s the line?

Living with MS and Romantic Relationships

I have learned from the process of being diagnosed with MS and being married that communication is key.

Four years ago, I sobbed when the doctor called me with my MRI results and a recommendation to see a Neurologist. “The lesions could be from migraines, but it might be MS”. I knew something was wrong with me, I was just hoping I was wrong.

My husband came with me to the first appointment and it was like we were hearing different things. He was hopeful, there were medications, this was good. I was hearing, “this will kill you, it’s just a matter of how fast and how painful”. It was quite some time before I felt like he really accepted this was a disease of degeneration. I would not stay where I was at the time of diagnosis forever, and most likely, I would not get any better.

Here’s the thing though, I was reading and researching and not sharing feelings or thoughts because I didn’t want to scare my husband, my partner. I had read so many blogs that said a MS diagnosis is the beginning of the end for so many marriages. I didn’t want that, I did not want to lose my partner and I did not want to show weakness to the world.

Much like my decision to start this blog, sharing my feelings about my diagnosis was hard and I wasn’t sure if I was ready. I was finally convinced that sharing is better than not, my marriage would grow stronger with honesty and communication. Other people with MS may benefit from my experiences during my path. So I lay myself bare (figuratively) for all the world and hope it doesn’t cause me too much pain.

We were accepted to a Couples Workshop for MS couples about 2 years ago. We thought if nothing else, it would be a safe place for us to talk with other couples dealing with this drastic change. We learned a lot, we learned communication is so very important. Listening and spending time together outside of M.S. and our kids. Connecting to who we are as a couple now.

I have been in therapy since that workshop, working on myself, my trauma, my life as this person that is not who I used to be. I think that is the most important first step; how are you going to be able to build your relationship with your partner if you can’t deal with your own stuff? My husband came with me to therapy a few weeks ago because I feel like my MS is getting worse and it’s effecting my mood. He said to my therapist, two years ago, she would have never had this conversation. He was right, I learned to bottle up my shit when I was little and hold it down like a wet dog trying to get out of a bath tub.

If you are the partner, hang in there, it’s so hard to go from being a person who has a view of what their life will look like and then get kicked down and told good luck figuring out your new life now. Pain changes people, not usually for the better..

If you have MS, believe in something, science, faith, your partner. It’s so hard to adjust to who you can be now from who you were before, at least it was and still is some days for me. Therapy helps, mine puts everything into perspective but also lets me complain when stuff gets really rough. Then she pulls me back and we figure out a plan of action.  She helps me see things from my partner’s perspective because sometimes that’s really hard when I am wallowing in my sorrows.

Multiple Sclerosis. How far along and should you be asking?

I am the type of person who needs information. Apparently I am a type A personality and don’t do well without control. I have copies of all of my medical records for the last 11 years, including blood work, radiology reports and everything in between. I read all the information I can get my hands on because I am trying to know everything I can about MS since I cannot control what it is doing to my body.

The first Neurologist I had, and fired because she told me to “shut up” when I asked if it was possible I could be secondary progressive didn’t feel providing patients with information was important. She basically just gave me meds, told me to take them and drew blood. Even when I had new lesions while taking the “best drug on the market” she refused to take me off of it.

My current team is amazing, I have no bad things to say about them but they always dodge me when I ask about the possibility of being progressive. I never understood why no one wants to discuss this. That is, until I went to an MS Education Summit at the beginning of November. Towards the end you are able to submit questions, so I did, five actually, and they answered four. The main question was about how doctors can tell when a patient is SPMS instead of RRMS. The actual answer made me better understand the logic which is all I really look for in understanding this disease that impacts each person in a different way.

The Neurologist, who also teaches at the local university answered, they can only tell when a patient changes status by talking with the patient and listening to how the disease is changing. That was followed by, patients shouldn’t be too concerned about getting that diagnosis though because right now, in the United States, there is no approved treatment for SPMS. This means that once you get that status insurance is less likely to approve any treatments for slowing down the progression any further.

It is times like those when I realize how terrible our medical system currently is. Treating MS is expensive, why wouldn’t you want to treat all types so progression slows and people can work longer and be part of society.

Final thoughts? I am no longer feel like I need to ask about my “type” of MS. Also, I learned at the summit that after a patient dies they cannot tell the difference between SPMS and PPMS when looking at the brain. I found that very interesting.