M.S.

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.

Me-centric and the Rest

I like the term ‘Me-centric’, I believe I came up with the word of the week. Unlike egocentric which the dictionary says it means thinking of oneself, without regard for the feelings or desires of others. ‘Me-centric’ is a bit milder than that. Me-centric would describe most all people. In this day and age we can be a bit self-absorbed. I do not intend that it in a mean way but we have our health, we have our jobs, we have our goals and so on. All of things in our lives that we do, feel, think and are is our ‘ME-ness’.

There is another part of ‘ME-ness’ that may sound awful but everyone’s favorite subject in life is themselves. Think about it, of all the things in the world you can be an expert on philosophy, art, seaslug biology, macrame, etc. the subject that you know more about than any other person in the whole entire world is you.

It is not all about you…and you know it.

With my illness I am definitely into my ‘Me-ness’ and I have to be. I have to be always aware of how my body is feeling. Is it too warm, did I take my pills, how much water have I drank, is the drop-foot increasing, and so on and so forth.

There are times when the ‘Me-centricities’ have to be set aside. Today is one of those days. I am sitting in the waiting room at the hospital as I write this. Nana is having her left knee replaced and she needed me. I picked her up at 5:10 this morning and brought her to the hospital with all of her stuff. This is more important than me. Does not matter that I have been unwell. It does not matter that yesterday my head hurt so bad that I kept no food down. None of that matters. She matters.

In our lives there is the ‘Me-ness’ and then there is ‘the Rest’. The Rest is the important stuff. The Rest is listening to you son drone on about Minecraft because it is important to them. The Rest is dragging your neighbor’s trash can back after collection because they have a hard time doing things. The Rest is when you say yes I can watch your kid for you while you go to an appointment. The Rest is putting others needs before your own.

‘The Rest’ is what makes us human. If it was just about you and nothing else there is no reason to even be here on Earth. It is our interactions with others and our environments that make a life. There is no point to life if it does not better, aid, or have an impact (great or very small) on this world. We were created with the capabilities to learn, love, adapt, and nurture.

So when we are busy in our lives with our ‘Me-centricities’
let us all try try to remember all ‘The Rest’.

The Terrible Horrible Awefulls

For the last four days I have been miserable. Not the ‘run of the mill’ regular miserable-that I am used to. I has been the ‘please take me out and shoot me’ miserable. As I have talked about in the past I suffer from migraines. I have for many years. For the last week I have felt terrible pain in my skull. The blinding pain that does not ease up with over the counter pills, dark rooms, and quiet. Today the 2nd of May is the first day I have been able to eat and keep it down. Every day prior I would vomit numerous times whether I ate or not. I don’t know what is causing it.

Yesterday I called to get a refill on my thyroid medicine and they ordered blood tests to be done prior to refilling. Those tests showed that my hypothyroidism has recently gotten far worse. They want to double my meds and then go up from there. I have no idea if that could be contributing or not.

Now I know I have a decent amount of stress in my life. I also know that stress can contribute to migraines. So all the things I have to do definitely could contribute to my stress and the last two weeks have had a bit more than normal. My two eldest boys were preparing for their church confirmation and there was a lot to do. There was all the preparations for before the day down to the ties they wanted to wear. Then there was the post service party to plan and food to prepare for the family members that were coming.

Then there is my grandmother she has decided that it is time to replace her left knee. As her ‘favorite’ it has become my duty to take her to her appointments and make notes and lists and schedules for all preoperative and postoperative things. We have got almost all of our ducks in a row for this, there are still 3 more doctor appointments and a tour of the skilled nursing facility she will stay at after leaving the hospital. I will take her to surgery at 5:30 in the morning and stay there the entire day. It’s a lot to keep straight.

Everybody has stress and everybody has things they have to do, I’m certain many people have more than me. So is stress that is contributing my migraines? Is it hormones? Is it just lack of luck on my part? Anyway you look at it they suck and then you just have to suck it up.

Get your head out from under the covers,
pull your big panties up then just grin and bear it.

wonder woman

 

Too Busy to Accomplish Anything

I started writing this blog 5 weeks ago and this is is why it is only now posted.

I simply cannot be the only person who feels like they never stop. I am constantly going here or there. Fielding phone calls and scheduling appointments. Taking kids to this or that. Playing chauffeur certain days of the week for my 84 year old grandmother and mother, a stroke victim. The old lady’s usual of getting groceries, going to doctor appointments, picking up meds from the pharmacy.

When I have an occasional morning free I have my water aerobics class, that I miss more often than I care to. That class is one thing that makes me feel good and helps with my stamina. Wednesdays are the church’s chancel choir practice. Weekends are full of teaching Sunday School and traveling to visit various family members who live across the state. My eldest has early morning jazz band rehearsals 3 days a week. There are all of the school activities my boys have throughout the year. There is after school homework and projects to be done. Dishes, laundry, bill paying, budgeting, etc. etc. etc.
There are so many things I want to do but never seem to get to do. I always feel like I’m being pulled into doing one more thing after another. 2016-04-28 15.42.22.jpgFor example…I have this dress I started making 5 weeks ago that is nearly done but has been waiting for 3 1/2 weeks just for the zipper to be put in for completion. I wanted to wear it for Easter but as things usually go there was no time or energy left to get it done. During that time leading up to Easter I had to make pinatas for the Easter egg hunt at church. I was also asked to fill in for a dear lady who was ill for the church choir. That meant Wednesday evening rehearsals to do a cantata for every Sunday service for the month as well as Good Friday.

There is the projects around the house-repairs, exterior painting, yard work, etc.  I have been painting the window trim on the house a couple at a time because there is no way to do them all at once and they still need their second coat. I have been earnestly planning to finish the kitchen remodel job started two years ago, but the crown molding has yet to be put up. I have the moulding and my measurements but haven’t seemed to have the time to cut it and attach it.

Last week I had an order f20160427_151753or 250 light20160427_151847.jpg house cookies for the local elementary school…that wholly encompassed 3 days of my life. Don’t misinterpret what I’m saying. I am glad to be able to do things when I am well. It makes me happy to be able to help, and I feel really accomplished when I am able to do things for a good cause.

It just seems as if there is simply too much to do and not enough time to do it. Then after you do the things that you cannot neglect, you are so tired there is nothing left for the rest of it. It cannot be right that after a day of running errands, etc. and making supper for your family there is nothing left of ‘you’. The you that wants to talk with them about their day or crawl on the floor to do puzzles. The you that wants to talk with your handsome husband about the day you had. Sometimes even sitting up to watch a movie with your family is beyond you. Often times I am so beat that I can hardly hold my head up.

I know other people have this same issue, but (and I may be wrong) with Multiple Sclerosis it seems like everything is a uphill battle with overwhelming exhaustion. Walking through the store is like trudging through knee deep mud, every step is an exertion. I wake up in the morning with fatigue even after a full night’s rest but unfortunately it doesn’t get better through the day. Copious amounts of coffee and cocktails of prescriptions the doctor gives don’t make much of a difference.

I guess what this rambling all boils down to is this…

…….I NEED A VACATION FROM MYSELF OR A MAGIC WAND!