health

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.

 

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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.

Suck It Up Buttercup

There are responsibilities taken in life that you never expected or wanted. That is how the last 6 weeks have been. My grandmother had her knee replaced and that meant I had to step up and try to fill her duties while she was gone. No biggie? Wrong.

The matter of cooking and cleaning at her home was taken care of for the most part by my uncle. He made sure Papa was fed and the dishes/laundry was kept up. It was all of the other things that became my burden, I was happy to do it because  it is my family and I love them. When a bill came in I would get out Grandma’s check book and forge the checks to make sure the water and the ‘can’t live without’ cable was paid. I ran errands and picked up meds.

Every other day I would go out to the managed care rehabilitation place and visit Nana to see how she was doing and keep her abreast of what was going on at her home and mine. Often bringing at least one of my three kids along so they could regale her with their tales of summer exploits. After a half hour to an hour we would leave so she could rest, go to therapy, etc.

Her being in the care facility post surgery was a God-send. She could have all of her needs met at the moment she needed them. She didn’t need to be taken to appointments doctor or therapy. It was all right there for her which made it easier on everyone and took the worry and strain off of me. There was no way I could be taking care of her at her home and still be able to take care of my family at mine.

The hardest thing, the responsibility I did not want and somewhat begrudgingly to admit hated was the care of my mother. Do not get me wrong I love my mother and there is always my familial duty towards her.

The relationship I have with my mother is complicated. Complicated by our past as much as the present. I shall give a heavily abbreviated history to give a little insight.

My parents separated when I was three. My mother left Sheboygan Wisconsin with me and came home to Iowa to be by her parents. My father an engineer would visit Iowa one to two times a year my whole life. He would come home for my birthday and a holiday such as Christmas or Easter, bringing me gifts like a bike, barbie ferrari or a radio boombox. Those visits were hard on me and I would be weepy and moody for a week or so after he returned to Wisconsin, I didn’t realize at the time how much it hurt not having a father but that realization came years later.

I grew up living in low-income housing developments as my mother and I lived on child support payments of $330-something a month. Sometimes food was a bit lean but we never starved and my mother would not apply for any food assistance and the like. I never had the fashionable clothes or the latest (you name it). I had regular visits and stays at Nana and Papa’s which was like some glorious holiday. They had cable, a yard full of green grass and trees to climb, and she always cooked big delicious meals and deserts-she also expected you to take seconds!

It is funny that as a kid you do not fully comprehend when things are not quite like they should be. Once you get older and looking back you can see the wrong that was in front of you all along. My mother slept a lot, I mean a lot. The appartment was always blacked out from the sun with thick lined curtains. When she was awake she could be loving and quickly change to teary or very angry. I spent as much time as I could playing outside rather than being inside in the dark with her. She could be abusive but I did not realize that it was abuse at the time. I would be spanked, a few times with hangers, for the smallest of infractions. Compared to the marauding gangs of near delinquent unsupervised youth in the ‘project’ complex I was an angel.

She would let me get some new to me (often thrift store) clothes and I would feel so good until she would make on of her regular down putting comments leaving me feel like I was fat or unattractive. She tried to instill religion in me by the fire and brimstone method. So I feared any misstep under condemnation to burning in hell. I never did sleepovers with friends or get involved with any extracurricular school related activities. We didn’t have money to spend on those or a car to get me there. All this and more left me so socially inept that couldn’t even talk in front of class at school without tears forming in my eyes.

As I aged I saw the irregularities of my home life compared to my peers and I saw injustice that was put upon me. I grew quietly angry. Internally I would steam over the fact that she never did anything. She never tried to better our life, get a job or education. She seemed content to hide away from life and responsibility. As soon as I graduated high school I moved out, not even telling her ahead of time for fear she would try to stop me with anger or more than likely guilt.

You may wonder about my father through all those years and why I didn’t reach out to him. Well, he was mostly an acquaintance, granted one that I loved and craved affection from, but we didn’t know each other very well. When I was nearing my teens he had remarried to another woman and my relationship with her was more than a bit strained. She came with her own set of issues and I already had more than my fair share. At that point the few visits a year were enough of a strain.

Over the years my view of mother changed, not that the anger completely dissipated but it was largely replaced with pity. She had been suffering from undiagnosed depressive disorders for years. She never sought any help with them so I in part still held some contempt for her inactiveness in even caring for herself. Then some 11 years ago my mother suffered a stroke. At that point and still to this day she was living with her parents, again a way of dodging responsibility for herself. They found her on the floor of her roonmin a near vegetative state which would last for a long while.

I was at my in-laws house having a pleasant visit when an uncle called with the news. When I hung up the phone everyone around me was hugging on me and showing genuine concern. I feel guilty about it but I was angry. It was her own fault…sleeping away her life, never doing anything to get the blood pumping, sitting and eating, getting heavier and heavier…she did it to herself-right? We left the kids there and my husband drove me back to town. During the 45 minute drive to the hospital I was quiet, trying to convince myself that I should not be mad I should be worried, that’s what a good daughter would be.

Over the weeks and months she slowly came back-somewhat. She eventually regained her ability to talk, remembered my name and gain her movement to a certain extent. These days she can talk and walk but with some definite disability. She hit the jackpot of not having to be responsible. Monthly disability payments, her aged mother to care for things at home and people to chauffeur her where she needs or wants to go. It frustrates me but at least I didn’t have to be responsible for her or feel guilty, she had all of her ducks put in a row by somebody else.

That was until Nana had her knee surgery. All of the insurance stuff and changes to Medicaid that happened this year became my job to fix and figure out. The fact that she never filed for Medicare when she turned 65 has created such a complex mess I cannot tell you how many hours I’ve spent on the phone trying to get things sorted out. Then there are all of the errands to appointments, pick up prescriptions, or going to the store to spend her money. Granted I was usually the driver for her and Nana for these day trips. But now my health issues, the kids out of school for summer, Nana’s surgery and all the rest it was seriously becoming the straw that was threatening to break the camel’s back.

I fully believe as I write this that I just may be an awful person. I am tired and tired of feeling put upon. I have gotten to the point where I am letting responsibilities at home slide. When I do get to just sit I want to do nothing but lose myself in a book. Then the phone rings and I dread answering it because what in the world does the world want me to do now. I answer it of course and wait for the next piece of straw to be placed.

I am glad to be able to help my family and I love them. So even when I am worn out and resentful of the phone ringing I take a beep breath and tell myself (often out loud), “Suck it up buttercup and get to it.”

 

 

 

 

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.  😉

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

Little Things to Smile About

As I get older I get the biggest charge about the little things. That is the way I think it should be. The newest, biggest and best is okay I guess but over the years I find more joy in the little overlooked things.

Today just reaffirmed this thought. With spring on its way the slowly warming weather has rapidly melted away the snow. This reveals the hidden life waiting to recharge under the sun’s glorious rays.

In one of my garden beds the little mother hen and chicks look just as good as they did before the feet of snow blanketed them for months. This simple discovery brightened my day. Who would have thought finding small succulents in the yard would have taught me a lesson I nearly had forgotten.

When things seem bleak, cold or hard it is not permanent. It is merely a stage, a moment in a life of many moments. Those days of hardship will too pass and brighter days will return…if we look for them.