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Category Archives: Multiple Sclerosis

Oh where, oh where, has my blogging gone?

My last post (before this one)….October 1st.

My current state…..Marvelous, Wonderful, Superfragilisticexpealodocious!!

Since refusing to give MS attention and wallow in my own self-pitiness (yes, that is a word.  It’s possibly a word I made up) I have been feeling……well, marvelous, wonderful, superfragilisticexpealodocious!!  I’m not taking any medication for MS specifically now and I couldn’t be feeling any more fabulous.  I’m still taking the Vitamin D daily and low and behold my thyroid medication was the wrong dosage so now that has been resolved for months.  I had an MRI back in December and NO new lesions and nothing lighting up showing activity!!! (activity related to MS that is, I do actually have a brain and it does function.  lol)

I got my ass in gear and joined a weight loss program at a local hospital.  I did this on November 7th.  Tomorrow I am hoping I hit the 40lbs down mark which is exactly the amount of weight I put on from the Betaseron fiasco. I feel amazing!  I won’t stop on the plan though as I have many more pounds to go.  Long-term goal is to be down to my goal weight by end of July 2013.  Short-term goal is to lose at least 10lbs a month which I have been hitting easily.  I have more energy than I know what to do with and no longer have constant thoughts about food or how crappy I look or feel.

2013 is so much better than 2012 was.  That year sucked with physical issues as you well know if you have been reading this blog since the beginning.  (ha ha ha, right!  lol)

  • I started a business of making items and selling at vendor/craft shows whenever I feel like it  (come like my page on Facebook:  Oh, Horse Feathers.  Psst, there are lots of items on sale as I want to get rid of the stock!!).
  • I’ve signed myself and my daughter up for Belly Dancing classes.  I’ve always wanted to learn but never had the guts,  It’s nice to be able to drag my daughter there since she is just the right age for it.
  • I’ve finally gotten into a few Digital Photography classes.  Maybe now I will understand what the hell I’m doing when I take pictures and how to use the lenses I have.  Those settings totally confuse me!
  • Our central Illinois winter has been non-existent so far.  YAY!!!  Yesterday was in the 60s!  I hate snow & ice so I’m ecstatic over what we have been experiencing.
  • I FINALLY hooked up Roku and Boxee to our TVs at home.  That may not sound very exciting but I put this off forever for no reason other than laziness.
  • I have been stating my ‘I Am’ affirmations like I said I would back in the last post.  I’ve done it every single day.  I am a true believer of stating intentions and affirmations.  It was worked so many times in my life.  Thank you again, Dr. Wayne Dyer!!!
  • I’m still in love with exclamation marks when I write posts!!!!!!!!  Oh, yeah!

The year will be one of the best ever!

Until next time……..

 

 

 
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Posted by on January 30, 2013 in Life, Multiple Sclerosis, Random Rant

 

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Feeling prettah, prettah, prettah….good

No news from me means one of two things.  One:  I’m busy as all hell or Two:  I’m feeling pretty good.  In my case, BOTH are true.

I’ve decided I am not even going to think about MS anymore.  When I do…well I feel crappy.  I know that positive thoughts can do wonders.  I wallow away in a lot of negative thoughts and so I’m trying to turn that around.  I’ve started doing some positive affirmations in the morning when I first get up.  I also am stating my ‘I Am’ wishes (affirmations) throughout the day.  (Thank you Dr. Wayne Dyer!)

My wonderful daughter is in lots of things (because I keep putting her in them.  lol!)  I’m a typical mom I imagine.   We moms will work a full-time job and then grab our kid to take them to some type of practice or event.  We get home sometime after the sun has already gone down.  We really are super-moms!!!   The good news (I think) is that I’ve been able to keep up with it.  Yes, I have days where I am feeling the MS fatigue or something, but most days and most hours of the day I feel good. Woohoo!!!!

My focus this month will be to continue the positive affirmations, to really, really try to eat conciously and to not put some things off to the last minute (like sewing pageant costumes).  Have a great October everyone!!!!!

 

 
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Posted by on October 1, 2012 in Life, Multiple Sclerosis, Random Rant

 

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Ultrasound from Hell and what-not

So, it’s been forever and a day that I’ve written here.  My life has ramped up with activities since my daughter got back from the summer at her dads.  I’ve gone from a very mello pace to go-go but not quite to the go-go-go speed yet.

Let’s see, I owe you all a follow-up to the ultrasound from hell (thyroid).  First, the test found I have Hashimoto’s Disease which I already knew about 25+ years ago.  So that was a ‘whatever’ moment.  They also noticed a node/nodule on the front portion of my thyroid.  No wonder I hated it when the tech was doing that portion of the test.  Truly hated, hated, hated it!  I go back in a year to repeat the ultrasound to check on the nodule size.  My thyroid medicine also has been reduced a lot.  I get the lovely pepto bismal colored pills now.  At least I can find it if I drop it!  

Moving on to the episode of hell during the ultrasound…..  I did actually go to my primary doctor after calling my neuro first, then calling the endo to let them know.   Off I go to the primary care.  Everyone seems to agree it was probably a vasovagal response which is nothing to worry about if it doesn’t happen repeatedly.  However,  what about the vibrations in my arms?!  Well, I seem to have stumped everyone with the description of that.  A jackhammer inside my skin and my arms not visibly shaking (or I don’t think they were).  My primary thinks that it might possibly have been some type of seizure since I was wiped out with exhaustion the rest of that day and all the next day.  Verdict:  Well, if it doesn’t happen again don’t worry about it.  Your brain was probably throwing all sorts of electrical charges out once I sat up and whatever was ‘pinched’ to cause the feeling of ‘kill me now I feel like shit’ became unpinched.  My response:  Thrilling  That’s sarcasm folks.    

I haven’t had any more episodes and I’ve actually been feeling pretty good.  Every day is different and it’s always different with intensity too but I’ve been good in general.  Now I wish I could stop eating and get control of my weight issues.  grrrrrrr  I swear part of my brain is damaged by the MS that controls eating.  I swear!

I have basically stopped going to workout because…..my daughter is back.  Instead of going there, I race home after work to pick her up and then race her over to some activity.  We’ve got volleyball, tennis, volleyball, and pageants.  Oh, and now…after months and months and months of no action on the modeling/acting front for her….she is getting some inquiries from agencies.  Long car rides to come from it all.   Whew!  On top of that I try to take pictures of her  and work on pageant clothing (sewing).  So, maybe I’m not really keeping stress out of my life.  It doesn’t help matters I’m also drinking a crap-load of caffeine again which makes me very irritable.  I must, must, must stop that again!  

What else is going on?  Well, my daughter’s fish died so we had to have a funeral for it last week.  I tend to laugh at inappropriate times because I find some things funny that others wouldn’t.  In any case, I did have to cover my face when I found out when my daughter and hubby were getting the fish out of the tank the tail fell off.  I know, I know!  It shouldn’t be funny.  Um, well it was hilarious to me as I stood there with my hands over my face and laughing so hard I’m crying. I alway start crying when I laugh hard.  It’s a family trait it seems.

Okay, enough for today.

 
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Posted by on September 14, 2012 in Humor, Life, Multiple Sclerosis, Thyroid

 

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Donate Today – MS Walk 2012

Just a quick note.  I know I owe more of a regular post to catch you all up on the ultrasound of hell, but don’t have the time right now.  HOWEVER, I’m reaching out to each one of you to consider making a donation to the MS Walk that is this Saturday for me.  I’ve been raising money for the Walk for the past 8 years.  It all started when my sister was diagnosed back then.   In any case, the walk is this Saturday so I’m doing a final push for donations.  Anything – large or small – would be greatly appreciated.  Share this post with your friends too!!!!

So, to donate just click this link and you can donate online.  

click me:   MS Walk 2012  

 
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Posted by on September 6, 2012 in Multiple Sclerosis

 

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Head Tilt Mayhem

Yesterday I experienced something I never ever ever want to experience again.  EVER!

Let’s start at the beginning.  I felt pretty good for the most part until about 12:30pm.  Oh, I guess I should tell you that Thursday I ended up leaving work a few hours early because I was stupid and went to read outside during my lunch break.  I lasted a whopping 5 minutes and then came in as I was utterly exhausted.  The MS exhaustion that is and I couldn’t keep my eyes open. So off I leave for home and crash the rest of the day in my bed.  Okay, so Friday I wake up and feel good.  I little achy but that is my norm.  Around 12:30pm I head over to my thyroid ultrasound appointment.  All is well as I get there early and get in early.  Woot!  Then it happens.

The ultrasound tech lady asks me to lie down with my shoulders at the top of the pillow so my head is tilted down.  So I hop up on the table and proceed to do as she asked.  Immediately, I’m feeling dizzy and a little odd.  I wanted to watch the screen as she started to do the right side of my neck but that was making the feeling rose.  So I close my eyes.  That doesn’t help. The dizziness continues to get worse, then I start sweating and I’m getting chills like you do when you have the flu.  By the time she moves over to the left side of my neck and telling myself to take deep breaths and relax.  However, now I can feel my hands starting to tingle and I’m really not feeling too hot. She finishes on the right side and tells me not much longer.  I haven’t uttered a word the entire time and am praying over and over to make her get is down as fast as she can.  Well, the last part she ultrasounds is the center of my neck and that really, really, really makes me feel horrible.  Its so uncomfortable and my entire body is hating it and making me feel horrible.  She finally finishes and I slowly raise up to sitting level and I tell her I have to sit awhile before I go. When I sit up things get worse if that is possible.  Both my arms from elbow down through my hands start vibrating internally.  I’m not talking tingling.  This is full out vibration as if I was holding a jack-hammer but it is inside my body.  My legs are weak and basically my whole body and I feel I should get to the bathroom.  I’m sitting there thinking something is seriously wrong and maybe the tech should be calling a doctor. But I don’t say a word and actually was miffed that the tech didn’t notice I looked like death and call someone herself.  Pfft.  Well, the vibrations start to diminish some and I decide to head to the bathroom out in the waiting room area.  My whole body was soaked and I’m sure I looked like death walking there.  I made it though and stay in the bathroom for awhile until I don’t feel quite as bad.  I look at my palms and my feet and they are bright red.  Well, I tell myself to walk out to my car and sit there as long as I want.  I make it out to the car and know there is no way I can go back to work but I’m also thinking there is no way I can drive 25 miles home. I try to think how I could get home without driving.  The hubs doesn’t work in the same town or even close so I would be waiting forever for him.  I supposed I could call people at work, but then I think that would mean I would have to leave my car in the clinic’s parking and it would get towed if left overnight.  I think I could possible get two people from work to help out but I don’t want to be a burde.  Soooo, I decide I will drive home.  Yep, stupid.  The drive home I have the air conditioning full blast and I’m still sweating.  I’m so out of it that it is very hard to focus on anything.  I’m driving like a zombie I imagine.  I took it slow.  I talked to myself (inside my head) the entire time and prayed and prayed to make it home safely.  I had to repeatedly blink my eyes to focus.  Towards the end of the drive I had to start squeezing my face or pinching myself to focus.  Well, I did make it home and I tore my clothes off as I get inside and lie down and fall asleep for 2 hours.  The rest of the day I spent in bed because I was wiped out.  I didn’t feel that horribleness anymore but it took its toll.

It’s the next day now and I’m weak all over. A trip to the grocery store was tiring.  Taking the laundry downstairs and then bringing it up after it was finished was tiring.  Every time I have to go up stairs or down stairs I seriously think I need to consider moving to a new home that is single level.  This has been in my head now for quite some time.  It seems inevitable that this house will not work out for me with MS. Today I also have stiffness in the very lower calves and ankles.  Yep, another thing I’ve noticed.  I wonder if this is what they call spasticity.

Yesterday was frightening. I had moments where I seriously wanted to die rather than feel that horrible. I really thought I was going to pass out driving home.  How stupid of me but I didn’t see any other choice.  You see, I hate asking for help and honestly I don’t even know who I can ask for help.  Everyone that I know has there own problems and I don’t want to become one of them. I’m pretty much a loner and I don’t reach out for anything. I’m not social so my circle of friends is very very small and practically non-existent.  I have people that are acquaintances and are my friends but we don’t go out and do things together.  So there is a limitation of how much I would open up.  It’s very hard for me to open up.  Too many things have happened in my life that I’ve really closed myself.  But, then again, I’ve always been this way. It’s been only a few times that I’ve made really good friends and then circumstances (distance) pull us apart and it fades away.

I guess with yesterday’s head tilt mayhem, I’ve finally had a scary moment which I believe was MS related.  I’m pretty sure it was related just because I tilted my head back.  Lesson learned:  Never ever tilt my head backwards lying down or even standing up.

 
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Posted by on August 25, 2012 in Life, Multiple Sclerosis, Thyroid

 

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All Things Me

Good things:

  1. My daughter is home from spending the summer with her dad
  2. School started yesterday and my kiddo exclaimed it was great and she loves her teachers.  (whew)
  3. I have energy to do things

Annoying things:

  1. If I try to walk around (shopping), I inevitably will continue to do it way past the point I should have stopped.  I swear I thought both my feet were broken during school shopping.  It was to the point I had to take baby steps and walk very slowly.  It was, well, horrible.  It’s not only the feet but also travels up my legs and in to my hips.  I get really stiff.  It was the first time that I thought it would be great to have a cane at that time.  (That is something I really don’t want to have but if I ever have to I’m getting a cool one with lots of color and some cool abstract design.  I’d also look for lots of bling on it!)
  2. I’ve choked 3 times in the past week while drinking water.  I’ve also spilt it down the front of me.
  3. I’ve had some slight tremors in my hands and also have some dexterity issues in them also.  It doesn’t happen constantly though so that’s good news.
  4. One day I was experiencing vertigo & exhaustion in the morning.  I contemplated going home from work but battled through it since it only lasted a couple of hours.
  5. Stairs in the morning = Good.  Stairs in the evening = Bad.  Half of the nights I won’t travel up the stairs to tell my daughter goodnight.  We have to say the goodnights on the main level of the house.
  6. I was stressing myself out by trying to meet a deadline for some sewing I do.  You see I like to make fleece hats and was thinking I would have a booth at a local celebration to sell them.  So I was really pushing myself.  There was one problem after another.  Lots of ripping out.  And then the big thing that clenched it….my sewing machine broke.  Well, I went out and bought a new one as I was still determined.  I get it home, set it up, and can’t get the thing to function correctly. (I also didn’t want to read the instructions).  At that point, I knew that fate was definitely telling me something.  So, I cancelled my registration to sell and now all the fleece is in piles in my dining room.  The one thing I noticed though was that my stress levels went down.  So, this is a good thing after all I imagine.  (I just have wayyyyyy too much fleece now.  I mean it’s seriously like a fabric store.)
  7. Went to the thyroid doctor this morning and my levels are off.  So, another reduction in the medication.  Oh, but then she tells me my thyroid is slightly enlarged and was asking me if there was any thyroid cancer in the family.  *sigh*  So, in a few days I go have an ultrasound on it.
 
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Posted by on August 22, 2012 in Life, Multiple Sclerosis, Thyroid

 

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Headaches are out to get me

(I HATE having to come up with blog post titles. I seriously suck at it)

Hello peeps, I know you have all been waiting on the wonderful happenings of me. I’ve been off caffeine now since….hmmm…well awhile now. I sometimes think about having a tea from McDonalds but have avoided it so far. Water is what I drink. I like water so that is a good thing. My skin has really improved.  I’m still attempting to eat real foods but there are days that I find that hard to do.  If I do allow myself something that has sugar in it, I find that I start craving it for the rest of the day and even several days after it.  I must be super sensitive to its effects.  That’s just great…NOT!  It’s frustrating and pisses me off especially since I love sweets.  I’ve been having nasty-ass headaches and have pinpointed it to 1) I’m lying down and 2) I’m sleeping.  (These are a pain in the ass…oh wait, I meant head.)  They are centered above my left eye and won’t go away with Tylenol or ibuprofen.  I did notice that if I laid on my left-side that the pain would dull enough to let me fall asleep or would go completely away.  Most nights (5 out of 7 days) these suckers would wake me up in the middle of the night and I was always on my back or right side.  So, I roll over to the left and then it starts fading.   My left arm has also been falling asleep whether lying or just sitting somewhere.  I finally called Dr. M even though I really didn’t want to.  I forced myself to make the call because of the weird left side connection.  I’m thinking blood blockages and such. The conclusion?  I’m back on the Flexeril at night.  I had cut it out back when I cut out Betaseron.  I’m not thrilled I have to take it again, but I haven’t had a headache since starting so I guess I’m relieved.

I found another weird symptom that I’m assuming is MS related.  It’s kind of bizarre and I haven’t heard anyone talking about this so maybe I’m just crazy.  What is it you ask?  Well, I’ll tell you.  I can be standing (usually) or sitting, and I will feel a vibration on my upper left outer thigh.  When this happens I reach into my pocket for my cell phone thinking its vibrating.  (No shit, this is exactly what it feels like!).  I don’t find my phone in my pocket (because I rarely do that but it is just instinct to reach for it) and then proceed to glance down at the location.  I have no idea what I am actually looking for….perhaps I think I have a bee or something there?!?.  Who knows really what I’m doing.  In any case, I end up a little dumbfounded and hoping no one sees me acting a little odd. In any case, the vibration only lasts a few seconds and then its gone. It’s always on that left side (again with the left side!)  Weird, right?  Yea, that’s me.

I’m still trekking to the fitness club about 4x a week.  Hydro-massage is heavenly.  Oh, about the massage.  There are pressure settings on how intense you want the pressure.  I typically use about a 3 or 4 initially and then less as the time passes.  The lowest setting is kind of interesting in the fact that I can pinpoint where I have less feeling in my legs.  I’m not sure ‘feeling’ is the right word but it sort of mimics the neuro’s exam when they poke you with a pin or when they use that vibrating stick (yes, I know there is a name for it but I have no idea what it is so…whatever).   Thanks goodness I’m not pressure-sensitive there with touch.  I cringe with pain / uncomfortableness when someone lightly touches my upper arms.  I pat, a rub, leaning on me.  All those make me jump back and get angry.  Of course, other people do not know I’m experiencing this pain sensation so can get quite hurt when I tell them ‘Do Not Touch Me!’.  Live and learn peeps.

 
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Posted by on August 9, 2012 in Life, Multiple Sclerosis

 

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