Author: creative•MS•mom

I have taken a lot of joy in my life as a wife and mother of three boys and decided to not let the challenges of having Multiple Sclerosis stop me from exploring the world and its opportunities. In fact, I feel that constantly learning, trying(and sometimes failing) and making stuff is what keeps me happy. Any stuff- jewelry, masonry, paintings, clothing, ceramics, gardens, drawings, print works, etc. I taught myself to sew and love build things…ok, ok I love any excuse to use power tools-but really who doesn’t? Every chance I get I want to try something new as long as my body and mind will attempt to cooperate.

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.

 

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No More Clotheslines

With three boys, my husband and myself there is always laundry. Sometimes lots of laundry. Thanks to the modern conveniences of washers and dryers it is no longer a long and arduous task. That is until something fails.

We had purchased a new washer and dryer 8 years ago when the hand-me-down ones finally bit the dust. Nothing fancy or overly newage with a bunch of computerized dodads and gizmos. The set served us well up until May of this year. The timer button on the dryer slowly began to die. You could set it to 50 minutes and it would work. Then after a few days the timer had to be set to 43 in order to work. A week later it was 35 minutes. You see a trend forming don’t you? When it got to the point of being only able to set it for 20 minutes of run time I gave up on it.

It was time to get the clothes line out. The weather had become warm and sunny for the summer so it was no big deal. I have always enjoyed drying things out on the line. In fact when I was a kid I always thought there was something magical about running through the fabric as it was waving in the breeze. There were too many days with rain, or more laundry than we had capacity to hang, even after running extra lines from the swingset to the fence and back. After a month of line drying I decided to see what could be wrong with the dryer.

I knew it was not the heating element because heat was no issue. Maybe the connectors rattled loose over the years? Why not, with the number of times it had been run and some of those with shoes in it. So the slightly daunting task of tearing open the dryer commenced. They do not make them in a way that anybody can rip them open. After pulling the dryer from the wall and disconnecting the power I went at it with pliers, screwdrivers, etc. I managed to only mangle up the back in minor ways during the process.

Here is the biggest tip I can give-TAKE PICTURES. Take pictures of everything before you tear things apart and keep little bowls around for holding the screws, bolts and what not(trust me you don’t want to loose them).

13315749_10209116129720932_590566965008311174_n.jpgWith a bottle of alcohol and some swabs I disconnected and cleaned all the connectors and their receptacles. Once they were fully dry I reconnected them. In lieu of fully closing up the back for fear of having to get right back in there, The back panel cover was reattached only with a couple of the bolts. Plugged it back in and tried it out with my fingers and toes crossed….no improvement.

At that point with the disappointment I quit for the night.

The next day I decided to do some internet research. I was almost certain it had to be the timer but needed to make sure that that was the likely culprit. After hours on Google reading forums and such I figured that it had to be the timer. I just had to figure out what I needed and where I was possibly going to get it. Back down to the laundry room to disassemble the control panel again. With the dryer timer piece in hand I returned to the computer to see if I could possibly get this part.

Found the exact part needed and a few places I could get it from. Most were places that would ship it to you and happily one place in my town had it in stock. I drove down to Dey Parts with the timer in tow. There I was greeted by a very nice and knowledgeable man. I explained to him what had been happening with the drier and showed him what I needed. He agreed with me that it sounded like the timer went out. I hoped he was right because there was no returning the part after I installed it.

It took no time to put the part in and reassemble the housing on the dryer. With a huge amount of hope I set the timer on the dryer to 50 minutes and pushed the button…IT WORKED!!!!!! I apparently squealed with delight loud enough that my family misconstrued the sound as I did something to hurt myself and came running. They came barreling down the stairs to witness my happy dance.

I am sure some are wondering why did I go through so much instead of just getting a new dryer. Did you miss the part about 3 kids and a husband? Needless to say we don’t have money just lying about to replace appliances, let alone hire repairmen everytime something goes wonkey. I guess I am just a firm believer in trying to do for yourself as much as you can. I may not know how to do somethings but there is Google to give me tips. So what it boiled down to was rather than drop over $600 for a new dryer or spend a few hundred $ for a repairman to just look at it, I decided to spend $80 on a part and hope that it worked. This time my plan worked out and that may not always be the case, but I was lucky.

 

DIY Laundry Soap

I have been asked by some friends about the items I make for my family’s use. At first some of them think I’m a bit funny for doing it until I explain to them how with a little effort, every once in awhile, I save our family hundreds of dollars a year. After that they ask for the recipes so I thought I would also share here in my blog.

laundry soap

4 1/2 gallons of laundry soap for $1.08 is soooooo worth it. 

Ingredients:

-1 bar of Fels Naptha
-2 cup of Borax
-2 cup of Super Washing Soda
-4 1/2 gallons of hot H20
*I use a big canning pot but just use the biggest pot you got

Directions:

Grate the Fels Naptha into the pot and add hot water, heat on stove and stir until melted. Then add the borax and washing soda. If your pot wasn’t big enough for all of the water divide your soap mixture between empty containers then add remaining water needed. I recommend shaking your soap container before use just to make sure there is no ingredient separation.

The initial cost for the borax and washing soda is nominal with the number of batches it will make over time. Been doing this for a few years and it cleans really really good. At 1/2 cup per load this recipe makes enough to wash 144 loads of laundry. Even better is there are no harsh perfumes that would aggravate my son’s eczema. 

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.

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.”