Testing

As someone who requires a journal for sanity purposes, I was surprisingly apprehensive about the idea of blogging. Maybe it’s the lack of my favourite pen in hand, or the fact that my computer doesn’t feel even a little like a well-bound book. It’s easy to slip into my purse, carry with me everywhere and it’s private. No one reads my journal. But there is a chance someone will read this… It’s kind of intimidating. So I decided to jump in. Write something that doesn’t make me feel raw in my first post. Really just wanted to if I could do it.

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Out With the Old and In With The New

For me, most of my MS symptoms are relatively invisible, especially since I was treated for CCSVI and my visible symptoms disappeared. I definitely felt like I had 10 years prior. However, at that time I had already been diagnosed for fifteen years, with symptoms dating back at least 3-4 years before that. So since the symptoms they could see were gone, they assumed I was miraculously cured! And although some days I felt like this, I still required almost daily naps in the afternoon. I still couldn’t walk long distances without resting. My sleep was terrible and although my nerve pain had lessened it was still there, especially if on one of these glorious days I ‘forgot’ I had MS and ran around doing things all day. So for this reason most people have no idea what a day in my life looks like. So when I’ve been far too exhausted to put on makeup, this leads to questions like, “Is the MS back?”

Half of me wants to laugh because of how well I must be hiding how I really feel. While the other half is screaming some curse filled diatribe about how chronic illness don’t usually just go away. Really what does it matter what they think? Why do I try so hard to pretend to be great? I figure no one really wants to hear about my health problems. They are there, but we all have problems. Everyone’s going through something. Unless things are really bad I’d rather not bore or bum out the people around me. So I keep it to myself.  I guess I’m sharing here as an outlet, so I don’t have to drag down my friends.

Since I can remember, I have always had trouble regulating my temperature. So the two extreme seasons, winter and summer, cause me the most trouble. Since I live in Southern Ontario, these are really the only 2 seasons we have. Two days ago I shed all my layers (tank top, t-shirt, long sleeve t-shirt, one or 2 sweaters, long johns, knee socks and pants) for my summer attire (dresses containing the least amount of fabric I can still pull off at thirty-nine).

At a doctor’s appointment this winter I needed pull up my shirt and down my pants to show her a rash on my thigh. She proceeded to tell me I was dressed like I was going skiing. This is my everyday attire in the winter. If I don’t wear it I am freezing all day long. Chilled to the bone. Where it is impossible to get warm. This is when the spasticity in my neck upper back and chest are the worst. I also struggle with Raynaud’s Syndrome in my hands, feet, nose and ears. The cold also aggravates the nerve pain in my legs and arms.  So I am happy to see it go and am hoping I can soon put away my winter wardrobe and maybe this MS hug that is slowly crushing me.

Out come the sundresses and following closely behind neurogenic bladder. For anyone who hasn’t heard this term before, it means that I do not have any bladder urgency. What I do have is trouble emptying my bladder. This leads to bladder infections, leaks and becoming a contortionist in a valiant effort to void my bladder. Oh, and since most of the time I don’t fully empty I leak all the time and don’t know it’s happening until I notice I’m wet! Which hasn’t yet, but will probably lead to some embarrassing situation at sometime in the future.

Summer brings the heat and humidity. Both of these things are incredibly bothersome to me. I have an incredibly low heat tolerance. So if the temperature is between 28° C and 30° C I am hiding in the air conditioning. If I need to leave the house I carry Ice Packs and a small cooler that I can put my feet in, to cool down fast. If I overheat, my legs get weak triggering some sort of leg tremors. I get extremely fatigued, to the point of becoming listless and sleepy. I get terrible brain fog making me a dreadful conversationalist. On one occasion my husband found me on the floor because I had gotten down to plug something in and couldn’t move to get up.  My husband picked me up off the floor and carried me over to lay in front of  the air conditioner and then cover me ice packs. As soon as I cool back down, I feel slightly drained but otherwise ‘normal.’

I love the sunshine and sometimes I miss things because it’s just too damn hot! I especially have to be vigilant with my ice packs when venturing out on my own in the heat since it has the power to totally incapacitate me. So although I love Summer, my body doesn’t agree.

Thanks for taking the time to read this. It has been incredibly cathartic. If any of this resonates with you please share your story. I would love to read it!

Please Stop Wishing Me a Happy Mothers Day

This is something I never thought I’d share with anyone but my husband. However, this past weekend has made me a little CRAZY!!! Yes, I’m pushing forty. Yes, the majority of women my age have kids. No, I do not have kids. I am not a mother. I have two cats and a dog. None of them are my children or furbabies as so many people like to say. They are my roommates and friends. Although sometimes they seem more like very affectionate squatters as they don’t pay their share of the bills. So please stop whishing me a happy mothers day! This only makes me feel “less than.”

I feel like less than a woman when you say this to me. I am not one of those people who chose not to have children because of MS diagnosis…though I was for a while. After having a life changing procedure to treat CCSVI (chronic cerebral veinous insufficiency) in 2011, I was suddenly the person I’d been 10 years prior. I had come back from SPMS (Secondary Progressive Multiple Sclerosis), to be rediagnosed with RRMS (Relapsing Remitting Multiple Sclerosis). The Neurologists called it spontaneous remission. But that’s for another post.

All this new found energy made me know that I could deal with having a child. If things got worse again I could deal with that too. (I have an incredibly loving and supportive husband) Also, I decided that being diagnosed with a chronic illness should not be a reason not to have children. My mind had changed and now I wanted a baby. All my friends, also late bloomers, were getting pregnant and there were babies everywhere. I got baby fever!

So for the next 2 years my husband and I tried. And tried. And tried to get pregnant. When this didn’t work we went to a fertility clinic. Had all the tests. I had cervical stenosis, this was fixed everything else inside me was working just fine. However there were more test results to come. Turns out my egg count was low and my husbands sperm morphology was beyond bad. We were put on some supplements and were told to come back for more tests in three months. During this time my father passed away. A month later I was pregnant and beyond the moon happy!

Everything was going great! I felt good, other than the occational nausea. At ten weeks I went for my first ultrasound. I was so excited. My appointment did not go as planned. I had been to first ultrasounds with friends and knew what to expect. A blob on the screen with a tiny beating heart. I couldn’t wait! My Mom was in the waiting room until she was allowed to come in and see the first look at my little miracle.

I knew something was wrong when the technition asked if I was sure I was10 weeks along. I was positive sinceI had been tracking everything for years now. She said something about wanting to get a better view. she turned the screen away from me and told me she would have to do an internal ultrasound. I was totally comfortable with this because once you been to a fertility clinic you are used to having foreign objects placed inside you!

So the internal started. She had me pushing on places had my pelvis propped at a very uncomfortable angle and it went on for a very long time. She then says that she needed a second opinion. She assured me this was normal and sent me to a change room to wait for the lead technition to get back from lunch. While I’m sitting in the change room, heart racing, mind spinning, I overhear the receptionist say that there was a second opinion needed on an ultrasound because they couldn’t find a heartbeat. I was devastated!

The second technition would barely look at me, was all business and refused to answer any of the questions I asked by pointing at a sign that stated that technition were not able to interpret ultrasounds and you needed to wait for your doctor gets the results. This was a Friday afternoon. There would be no answers until Tuesday. I left in tears knowing there was no heartbeat, but hoping I was wrong and overheard a conversation about someone elses ultrasound.

My Mom immediately returned to the clinic after sitting me on a bench in the hallway. She demanded results! They couldn’t give them. They said my only other choice was to go to the emergency room. I wasn’t bleeding, wasn’t cramping, it really didn’t seem like an emergency and I don’t like to bother doctors with real emergencies to deal with so I decided to wait it out until Tuesday.

That Saturday one of my second cousins was getting married. I really didn’t want to miss it. So I went, and didn’t drink, hoping that somehow I was still pregnant and that the ultrasound had made some kind of mistake. Miracles happen for those who believe, so I believed. My husband got blissfully drunk! Suprisingly, I’m very good at compartamentalizing and had a great time at the wedding! As soon as I returned home I commenced my depression.

We waited until Tuesday and my husband took the day off work to come to my appointment with me. My doctor (a crazily uncompassionate woman) walked in the room and the first thing she said to me was, “What is he doing here?” I said for moral support so she proceeded to giveme a pamphlet about losing you baby without telling me anything about my results. I told her they wouldn’t tell me anything at the clinc and asked wht happened.

She proceeded to tell me that I had what was called a missed miscarriage. A term I had never heard before. What it meant was that at 7 1/2 weeks my baby stopped growing (died) but my body didn’t realise it and that was why I wasn’t bleeding yet. She sent me home and told me I would start to bleed anytime now and just to wait for my body to do what it’s supposed to. As someone who doesn’t like taking medication that is not totally necessary I thought this was a great idea. besides isn’t that what happens naturally when you lose a baby?

Two weeks later I finally started spotting, and my pregnancy hormne levels were steadily dropping. Things seemed to be working on their own so I waited. I was spotting for months, when it finally stopped and for ten days I thought it was over and when I started bleeding again I thought it was my period returning. When the bleeding continued for another 2 weeks I returned to my doctor.

She sent me for bloodwork and another internal ultrasound. the bloodwork came back normal, no pregnancy hormone left in my body. The ultrasound on the other hand showed I still had products of conception lodged in my cervix, holding it open, causing the spotting. I was in shock, I miscarried in the beginning of November, It was now February and I was still carrying around my miscarried baby. I wassent to emergency immediately where they gaveme pills to makeme miscarry fully. If I was still bleeding after two days I was to return to emergency. I had no idea the human body could lose so much blood and keep living. I thought for sure this had worked. Somehow my body just wasn’t willing to give up. I kept bleeding and returned to the hospital where I was booked for an emergency D&C. (dilation and curettage)

You’d think it was over but I spotted and cramped for the next two weeks culminating in me passing a large blood clot which I took back to the emergency. They did another ultrasound and finally everything was gone. Now I could finally start trying to get pregnant again.

This all happened about 2 years ago. I have not been pregnant again and upon going to a second fertility clinic was informed that our chances of getting pregnant without help are less that 2% and with help, IVF (in vitro fertilization) our chances were still less than 10%.

We decided not to do anything and if it is meant to be, I will be a mother someday. If not then we live without children. Which believe me isn’t the worst hing in the world. We do have much more freedom than our friends who are parents. Like when I need a nap, there is nothing stopping me from taking one.

So when someone says, Happy Mothers Day to me, or gives me a mothers day flower at a restaurant because I am of child bearing age, it stings. It hurts because, no I am not a mother, but wish I was. Years ago, before my fertility problems I never thought twice about asking someone if they were planning on having children. Now I realise how invasive this question really is. You never know what is secretly going on in someones life.

To all the mothers out there, I hope your mothers day was wonderful. And to those of you who feel the need to wish me a happy mothers day, please don’t. I know you mean it as a compliment, like I would make a great mother or something. The thing is I know this…but it doesn’t make me feel any better.

 

Changes

So, like everyone with MS, I have had to learn to adapt. Constant changes. I was feeling great (minor daily issues) for close to seven years. Then RELAPSE! That dreaded word anyone with a remitting chronic illness can understand.

Suddenly, I’m not great. My daily struggles have turned vengeful. It’s like fighting with your body and brain. The things I could easily do before have become chores.

As someone who doesn’t take disease modifying drugs and tries to steer clear of pharmaceuticals as much as possible, I’ve really had to reassess my views. There still isn’t a disease modifier I believe in enough to suffer the side effects. But how do you deal with the symptoms that crop up during a relapse? So do I suffer through them or do I bite the bullet and see if there is anything that can help make my days a little more bearable?

This relapse includes a nasty case of an MS hug, weakness and fatigue in my upper and lower limbs, intermittent standing leg tremors, a worsening of neurogenic bladder symptoms and as always nerve pain that is either in my jaw (tooth), scalp, lower arms, hands, lower legs, feet, or all of the above. So I caved. I went from taking one pill (for Major Depressive Disorder and OCD) to taking four different medications. I feel like I’m popping pills like candy. I know for someone who needs a lot of medication this won’t seem like much but for me it’s a lot!

The thing is all the medications are working and my pain levels have decreased greatly. But it’s a slippery slope. Where do you stop? I don’t want to be that sick girl! I don’t want to deal with MS! But who does, right?

So for now I will take the medications that are working for me at this point and hope that this relapse will pass and I will be able to stop some of them.

If I could only get myself together enough to resume a healthier lifestyle. Somehow make myself believe again that I deserve to be healthy and treat my body as such, but that’s for another post.