multiple sclerosis

diagnosis, symptoms

Corn Festival Fun

My husband Tony and I have been together 18 years as of this coming September. Over those years the love of my life has held a respectable day job and has been a working musician. He has been in variety of bands in a variety different genres. When we first started dating in the late 90s he was in a rockabilly band, but has been in rock, country and blues bands as well.

I think it is best to say that my husband is a musician through and through who has a pesky regular job that occupies his days. We have traveled all over Iowa, our home state, and many other midwestern states for gigs. There also many times where things do not work out with other bands and they need someone to fill in the guitarist slot for a show or two. Quite a few times this has happened and Tony will get a call asking if he can play.

That is what happened this last week. Tony got a call from a friend and onetime bandmate asking if he could fill in for two shows because their guitar player had a death in the family. Luckily his regular band was not already booked to play shows at those times so he was free to help out. It is good to help someone in need but it is even better when you get paid! With two days to learn this country bands set list my husband got to work.

10426658_772770716077120_3900609912621251311_nCedar Rapids is a city with a population of around 130,000 people and is about an hour away from our home. It was there that the Saint Judes Sweetcorn Festival was being held and Tony was to play a show. For those of you who do not know Iowa is an agricultural state-corn, soybeans, hogs, cattle, etc. One of the best things (in my opinion) is the sweetcorn that is ready towards the end of summer.

I am not the only one who loves the corn 14022284_1177499242270930_6446184124476234210_n.pngbecause for 41 years St. Jude’s has been hosting a sweetcorn festival to raise funds for the catholic church and school. It is a pretty big deal and there is so much more than just eating corn…they have funnel cakes too! As you can see from this years flyer a whole day can be spent having fun for a good cause.

Tony, the two older boys and myself went to Cedar Rapids for the fun and the show. It was hot but not unbearable, and had partly cloudy skies which really helps with the heat-especially when you have a small tolerance for it.

While my husband set up and during most of the time he was playing the boys and I saw all that there was at the festival. We played bingo, ate ice cream, shopped, and of course ate some corn. The day was very pleasant. Later that night I got a message from a family member asking if I saw the news. No I don’t really watch tv at all. Turns out Malcolm, Ian and I was on the news for 2 seconds! Lol, it is like we are famous!

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Just goes to show you that when you are hunting for funnel cake you may miss what is happening around you.

 

Being Goldilocks and Bearing the Weather

Everyone knows the storey of Goldilocks and the Three Bears. The tale of the little girl with the golden ringlets who commits criminal trespassing and theft at the home of the bear family, while the bears were out for a stroll. She breaks in their house, tries out their beds and partakes of the porridge that mother bear lovingly slaved over a stove to make for her family.mama bear.jpg

The little girl tastes each bowl of porridge, spreading germs may I add, until she finds one that is satisfactory. Papa Bear’s porridge is too hot. Mama Bear’s porridge is too cold. Then finally Baby Bear’s porridge is deemed just right, so she eats the poor infants food all up. Depriving a child of nourishment.baby bear

Even as a child I had misgivings about the little girls actions and thought the Bear family would have been fully in their right to eat the selfish little Goldilocks. But I digress…

With Multiple Sclerosis I find a parallel between this Mother Goose tale and how  I deal with weather in all of it’s variants.

During the peak of the summer months  the weather is just like Papa Bear’s porridge-too hot! If the weather is hot and humid I have all vigor of a limp noodle. Once the temperatures creep over 83 degrees my legs feel so heavy that simply walking across the yard makes me feel like Sisyphus eternally pushing that boulder uphill.

According to the National M.S. Society these temporary changes can result from even a very slight elevation in core body temperature (one-quarter to one-half of a degree). An elevated temperature further impairs the ability of a demyelinated nerve to conduct electrical impulses.

Granted these heat induced issues are just a temporary worsening of the symptoms, but it does suck when you want to enjoy the season. There are measures to be taken when I know I will be out in the heat. Wearing body ice packs on my torso, wrists, ankles and neck- while not stylish does keep my core temperature down thus staving off the the weak, wobbly and woozies.

Then there is Mama Bear’s porridge-i.e. the way too cold winter season.winter poem

Living in the midwest we have
the full gambit, from way below freezing temps, sleet, wind and loads of snow. While the cold does not cause anything like the heat of summer it has it’s own ‘lovely’ way of making your body miserable in regards to M.S.

With the very cold my nerve pain goes throught the roof. Those icy tingles that one gets from too much exposure to me feels like daggers delving deep into my hands, feet and thighs. It is as if everything is amplified tenfold. My muscles are stiffer and thusly walking on icy surfaces is a particular feat. Imagine a giraffe on rollerskates, that is me.

Of course you plan ahead for the weather. Additional layers are a must, especially on the extremities with lack of feeling. Keep moving also helps, if your blood is circulating well you will feel marmer. Either way you do it you have to be conscientious at all times of how your body is doing.

Then there is Baby Bear’s porridge, like Spring and my absolute favorite Fall–just right.springandfall.jpg Not too hot and not too cold. The happy body weather. The weather where a sweater or light jacket is the only thing you need when going out of doors. I love being outside any time of the year but unfortunately only certain times work for me.

It’s those other times of the year…where you can only get so many layers on before you cannot breath or (for decency sake) you can only get so naked. So for now I am content sitting in my air conditioned home drinking iced coffee and dreaming of the Fall to come.

 

Daith Piercing Relief

It has only been nine days since I went and got my daith pierced. I know of a few people that have had it done simply for the relief of migraines. Those people have ALL reported a major improvement! So I made an appointment at a local and highly recommended shop to get the piercing done to my right ear. I figured my right ear would be best because I habitually sleep on my left side and I expected it to be sore.

2016-08-10 17.56.55.jpgNow I expected it to hurt some, more than when I self pierced my earlobes, because it goes through the ear cartilage. When I went in the lady who did it was very nice and explained all that she was going to do before she did it. I was surprised to feel a little nervous while I was sitting there. She sterilized my ear thoroughly and placed a clamp on that little part of my ear that was to receive the earing. Then came the moment when she told me to take a breath in and a then let it out. It was upon the exhale that the needle was plunged through with an audible pop.

My legs actually kicked out with the moment of pain…I was a bit embarrassed by that and the moisture brought to my eye. For goodness sake I have had surgeries, injuries galore, years worth of monthly iv treatments, broken bones, and birthed three children all to find a piercing made me jump. Rather sad I know.

She continued to swab the newly punctured ear and then fed the earring through slick as a whistle. After getting post care instructions I was out the door. The whole process was maybe five minutes at most. My ear felt a bit tender for a couple of days but really nothing to even notice unless you accidentally bumped it.

So as I stated before I had this done nine days ago and my ear nearly fully healed, the earing moves around with ease and no discomfort. The most important thing to report is that I have had no migraine for 9 days. I cannot remember the last time I went 9 days without a migraine. Now I did have a tension headache one day but I was seriously stressing out about a sudden $800.00 automotive repair job and was unconsciously clenching my jaw. But that was it!

As time goes I will periodically update all of you on how well it is working for staving off the migraines. Time will tell if this a true cure-all, but so far everything is all sunshine and lollipops.

Oh just between us I kind of feel like a badass with this extra earing.   😉

Ever find yourself wondering what the heck is this happening to me? Like most of us with some ailment this is more often than not. With Multiple Sclerosis it seems like it it is everytime I turn my head, or in this case it is literally everytime I bend my head.

Over the last three months it has become more and more frequent. I will be going along minding my own business turn my head looking down and zap! A shocking jolt of electrified pain flies down my left side and down the outside of my left leg. It lasts a mere moment but definitely doesn’t feel good. In fact it hurts like touching live electrical wire, it’s best not to ask how I have the unfortunate first hand knowledge of how that feels.

Google as we all know is a very dangerous thing to use for self diagnosis.google Search some symptoms and next thing you know you have some rare and incurable brain cancer. Knowing this I of course Googled.

*Herniated disc? Possible, back in 2000 I was hit by a 3 ton truck while driving Ford Festiva, maybe it is a latent (16 yrs latent) injury.

Nah, not likely.

*Ankylosing Spondylitis a type of arthritis that strikes the spine? Well arthritis does runs in the family, but not this variety.

Probably not.

*Lhermitte’s Sign, an electrical sensation that runs down the back and into the limbs. A symptom of other syndromes but commonly associated with M.S.

Ok, this one makes sense.

What causes Lhermitte’s sign?

In multiple sclerosis, Lhermitte’s sign is caused by damaged nerves responding to the movement of the neck. The movement causes inappropriate communication between the nerves because they are no longer fully protected by their myelin sheath. Sometimes the brain interprets the messages as pain even though there is no physical cause for the pain.

Evidently there is no way to get rid of it and it is not detrimental but it is literally a pain in the neck…er…back…er…leg. Well one more thing to try to get used to.

Jumping Out of My Skin

A few years ago I started to have issues with startling at the drop of a hat. I can be going about my business and somebody drops something sending me into a near cardiac. Granted when I’m deep in thought the whole world drops away and I’m completely oblivious to my surroundings. That being said it hurts when I am startled, literally it causes me physical pain. Like a electric shock in my chest. It is triggered by sound and sometimes by not noticing a person is approaching.

Now this is not a continuous thing…thank goodness. If I was constantly startled by every noise it would be crippling especially with 3 children and their friends rampaging through the house. Seriously at any given time there can be around ten kids coming and going, ringing doorbells and making noise.

This extreme startle reflex I discovered is called Myoclonus. In my case it is stimulant sensitive Myoclonus. Multiple Sclerosis has so many and varied symptoms. Each and every individual stricken with MS has a separate experience with the disease. It is not a one size fits all thing. Of the symptoms many suffer Myoclonus is one that can be overlooked or not readily associated with MS.

I wanted to know what causes Myoclonus and found that there are many different causes but in regards to Multiple Sclerosis it is likely the result of brain or spinal lesions.  As with everything to do with Multiple Sclerosis it is not fully understood what causes this but it is believed that in cases of stimulus sensitive Myoclonus, the brain becomes overly sensitive to the signals caused by external stimuli such as sound.

Myoclonus according to the National Institute of Neurological Disorders and Stroke
It refers to sudden, involuntary jerking of a muscle or group of muscles. Myoclonic twitches or jerks usually are caused by sudden muscle contractions, called positive myoclonus, or by muscle relaxation, called negative myoclonus. Myoclonic jerks may occur alone or in sequence, in a pattern or without pattern. They may occur infrequently or many times each minute. Myoclonus sometimes occurs in response to an external event or when a person attempts to make a movement. The twitching cannot be controlled by the person experiencing it.

In its simplest form, myoclonus consists of a muscle twitch followed by relaxation. A hiccup is an example of this type of myoclonus. Other familiar examples of myoclonus are the jerks or “sleep starts” that some people experience while drifting off to sleep. These simple forms of myoclonus occur in normal, healthy persons and cause no difficulties. When more widespread, myoclonus may involve persistent, shock-like contractions in a group of muscles. In some cases, myoclonus begins in one region of the body and spreads to muscles in other areas. More severe cases of myoclonus can distort movement and severely limit a person’s ability to eat, talk, or walk. These types of myoclonus may indicate an underlying disorder in the brain or nerves.

There are drugs you take to help with this and I find it most helpful for me to be as aware of my surroundings as possible. I still jump here and there but at least I am getting more used to it. More importantly those around me know I have this issue and no longer get upset that I freak out when they come around the corner unexpectedly. If nothing else I am sure that I’m entertaining to watch.  😉

My Meandering Mind

We are all busy with what life has going on for us. Jobs, kids, budgets, chores, to-do lists of all kinds and schedules can keep our brains working overtime. It can be a real effort to keep it all straight.

I gather it is a common occurrence to lose your train of thought or to misplace your keys. Then again…I think for some of us it may be a chronic issue.

Everyone has walked into a room and then wondered why you came in there in the first place. The other day I traipsed through the house to the kitchen with great determination. Once I got there I had no idea as to why I went there. There had to be a reason I went, right? Looking around the room I saw nothing that triggered why I needed to be in there. So I left feeling a bit baffled.

Returning to the other room hoping for a clue and finding none I gave up. After sitting for two minutes it came to me that I wanted something from the junk drawer. Getting up I headed back to kitchen certain that once I looked in the drawer I would instantly remember the ‘thing’.

On the way my phone rang and I stopped and spoke to the person calling for two to three minutes. After the call ended I just stood there. What was I doing again? Oh, yes..junk drawer.

Five minutes of rummaging through paperclips, child safety locks, broken action figures(to be fixed…eventually), bread ties, keys to God knows what I was no closer to finding out what the heck it was. And to this day I still do not know what I was after.

The same thing happens with conversations. On occasion I will be going on a nice roll and then hit the mental wall. Sometimes it is a speed bump but other times it is a wall. I’ll be darned I was trying to make a point or tell a story and *Poof* it was gone. My wonderful husband and friends are used to this and they either wait for me to find the thought or they help me remember where I may have been going with it.

The one that really ticks me off is when I lose a word. Now this word is not unfamiliar to me and I have probably used it a million times but at that moment I cannot pull it out for anything. I really believe that my mind is full of sink-holes or quick sand. The thought or word is happily skipping along my grey matter when suddenly it is sucked down and buried.

Then there is the times my brain switches gears from one thing to another leaving whoever I am with a wee bit lost in the lurch. We will be going along just fine when suddenly I see something or remember something from prior and it will instantly fly out of my mouth. My best friend has had me do that to her so many times now it is now a joke. In the animated movie “Up” there was this talking dog and it is me in a nutshell.

So during those silly moments either I or my dear friend will just holler out “Squirrel!” 

It is far more embarrassing having those moments out in public or with people who are less used to your whatever you call it-Cog Fog, Brain Farts, Senior Moment, Space Out, Meandering Mind, or Case of the Dumbs. Over the years I’ve gotten used to it and can laugh it off but that doesn’t mean I like it.

I take solace in the fact that I’m not the only one suffering from moments of mind flatulence. 

Typhoid Mary Syndrome

Now I don’t know if this is the right thing to call it but over the years I had a distinct feeling that I was the Typhoid Mary of neurological or other diseases. After my diagnosis of Multiple Sclerosis it seemed that people I knew started to fall like dominoes with disease.

A friend and groomsman at my wedding got diagnosed with Multiple Sclerosis. A real kick in the teeth because he was young married and with children. He is doing wonderfully well, but in my mind he was never to have such a thing.

Then my dear neighbor friend of years had health issues and was diagnosed with Parkinson’s disease. Just in her fifties and now burdened with an unfair ailment. She is doing well with it but has to be careful not to over exert so our family is so very happy to help with yard labor and snow removal.

One of the sincerely sweetest girls I have known was then afflicted with another disease. I had gone to college with her, attended her wedding and met her handsome little red haired boy. This again was something I found unfair, she was diagnosed with Lupus and Fibromyalgia.

Then another dear friend, this time from my high school days was diagnosed with something terrible. Chiari Malformation  is a terrible thing she has had surgery to help with the brain herniation through the base of her skull. Of all things why this?

Withing a couple of years of my diagnosis another person dear to me went through too much health wise. She lives across the street and after so many things cruelly put upon her she now has Raynaud’s disease.

This is the short list there are many more but I have the ‘brain fog’ today. It may be that once you are diagnosed with something your more attuned to other’s afflictions. It could be that as you age and everyone else ages these things become more commonplace. But you can see how I had possibly felt a wee bit like Typhoid Mary for a few years.

All I know is these are wonderful people who do not deserve to be afflicted but they are also blessed with strength and perseverance. They are to be loved & honored and are a model for anyone at any stage of their lives. ~Love you all