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Monthly Archives: July 2012

Insert Catchie (Catchy) Post Title Here

I can never figure out any catchie (catchy) post title.  How do people come up with clever titles?  It’s beyond me.

Have you been watching the Olympics?  I do some but I’m not a crazy, must-watch every second kind of gal.  I like to watch swimming or anything pool related.  Last night was the synchronized men’s diving which I had never heard of before.  It’s now a new favorite of mine and the men look oh so nice in their teeny-tiny suits.  In fact, butt-crack isn’t so bad on their bodies!!  Oops, let’s focus again.  Swimming is awesome!  My daughter swam on a team for a couple of years and I loved watching her.  For some stupid reason, I let her quit and now I can’t get her to go back. I chalk it up to a moment of stupid parenting.  Did you know they had kayaking as an event?  I had no idea.  That course they built was pretty cool though!

Now for a quick update on the MS stuff….  Several weeks back I started drinking pop (you may know this as soda but it is pop where I’m from) and tea.  Stupid me.  My body can’t handle the carbonation or the caffeine.  I have adverse effects immediately just from drinking 8oz.  Well, when I get back to drinking them then I drink more and more.  Yesterday, I put a stop to that.  Water is now my go to drink and honestly I feel so much better when I am drinking that.  I’m having the crappy, nasty headaches associated to the withdrawal though.  Last night had a doozie.  If I hadn’t stopped drinking that stuff yesterday I would have thought the headache last night was MS related but it wasn’t.  Thanks goodness.   I’ve been having joint pain and some fatigue but I think that is completely related to what I’ve been eating.

I’m also attempting (this has to be like the 156,789th time I’ve attempted) to change my eating.  Lately I can’t seem to stomach cooking meat at home.  It is grossing me out.  I used to only have that squeamish feeling around chicken but now it is everything.  I can eat meat that someone else cooks without a problem but even heating something up in the microwave at home is disgusting me.  So, I’m leaning towards eating things that are ‘real’ food.  I’m not being fanatical about it though but I’m trying to choose real fruits and real veggies.  I’ll eat real butter or real cheese (which I hardly ever eat anyway).  I will probably eat tuna from a can some times.  I’ve always noticed that eating processed foods do not fill me up so I eat and eat.  If I eat a real food, I actually can feel full.  Sugar makes my feel like crap even though I love it.  Will I never have a sugary thing again?  No, but I don’t have to have it every hour!!!

This is also the first week I am trying to go workout after work each day.  Yesterday I found my favorite equipment called the Arc Trainer.  I can’t do the Elliptical as it hurts my knees and ankles but the Arc Trainer works well for me.  I prefer it over any of the others including a Treadmill.

Oh well, that’s all I’m writing about today.  Not very exciting but it never is.  Oh, just remembered. I ordered copies of my first MRI and the latest MRI for myself.  I wanted to be able to really look at the images and see the spots (lesions).  Just a few minutes in a doctor’s office doesn’t really help me ‘see’ what is going on.  Now I will have them to ponder over all I want!!

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Posted by on July 31, 2012 in Life, Multiple Sclerosis, Random Rant

 

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Because It Made Me Laugh

Humor is good for us….

Thank you FamishedMammal for making me smile and laugh!

This is ‘O Fortuna Misheard Lyrics’:

 
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Posted by on July 28, 2012 in Humor, Life

 

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Like a Wet Noodle

Relaxed to the point of my legs feeling like a noodle…..

Floppy…

Heavenly…..

Those are words that describe how I felt after a Hydra-Massage yesterday.  AWESOME!

Let’s back up a step.  Earlier this week I went and signed up at a fitness club.  (I would say which one but I don’t want anyone that knows me that reads this blog to come stalk me there or anything.  I’m trying to be incognito while I’m fat. lol!  But, I think I’ll probably out myself on this within the next few sentences anyway.  So anyone that knows me PLEASE don’t come looking for me.  lol  )  The place is cool and there is a membership level that allows you to get all sorts of other stuff on top of just using the fitness equipment.  Of course, all these ‘things’ are really what is like icing on a cake for me!

I finally went yesterday for the first time to work-out.  The first couple of times going anywhere new for me is really stressful and anxiety riddled.  I did it though!  I went!  I walked on the treadmill for awhile and started sweating so I know it did some good…briefly.  Once I was done with the set time on the torture device  treadmill, I thought I might as well check out the hydra-massage thing if it was available.  Lucky me, it was available!!!

I was clueless how to work it but they were very helpful with what to do.  I laid done on it and went to a happy place immediately. It’s awesome!!!  You have all the control at your fingertips for the strength of the massage, the location and the speed.  It was 10 minutes of wonderfulness!!!!  With this MS stuff my body is always having some type of pain.  (I typically do not pay any attention to it anymore since it is not nearly as intense now that I’m off the medication.) This machine did wonders for relaxing my body.  When the session was done, I felt so very relaxed.

I actually left for home right after once I did the whole locker-room thing.  I’ve learned that I really should wait awhile before driving home.  I was just a bit too relaxed and kind of spacey for driving although I made it successfully home with no mishaps.  😀

I’ve decided that all the extras, with my membership, are actually like treats or ‘way to go’s’ for working out. In addition to the hydra-massage there is tanning and light-therapy.  AWESOME again!  To me these extras are all free, free, free and so, so, so worth it!!!!

 
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Posted by on July 27, 2012 in Life, Multiple Sclerosis

 

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What’s up!

It’s been almost a week since being off the Betaseron medication.  I’ve noticed that my non-stop eating has slowed some.  I get full now whereas on the medication there was no such thing.  I’ve also noticed that my joint and muscle pains are minimal and energy is way up.  YAY!  I almost feel human again.  Well, in this one tiny aspect I do.  I’m happy and relieved I’m not taking anything right now.

I’ve decided to really strip down all the pills I take that a prescriptions.  I was taking a muscle relaxant at bedtime but have eliminated that.  The synthroid I have to keep taking for my thyroid.  And I’ve stopped taking…oh wait, there isn’t anything else I take!  WOOHOO!

I hate medication.  It has screwed up my life so many times.  Now I’m having to deal with the lasting effects of Betaseron where I put on a ton of weight.  I’m fat people!  I hate going out in public and will try to get out of it if I can.  I don’t really care about going to work because they see me constantly so there isn’t that much embarrassment around it.  But everywhere else….ugh, I cringe at the thought.  Even if it is just to go see family members it’s bad.  I think that is even worse than strangers. Let me think about that….Yep, that is worse.   God forbid I meet someone I haven’t seen in years!!

I’ve dealt with weight issues in the past but never to this extreme.  I tend to put on weight when I’m not happy.  I haven’t been happy for many years now.  So, I was already heavier than I should have been.  Then this whole fiasco since February of this year.  *sigh*

I am contemplating the whole membership to a fitness center again.  Of course, I always contemplate lots of things then proceed with paying for it and never ended up going.  What a waste of money.  I guess I need a workout / diet / good friend, buddy that doesn’t know me at all.  That way I know there are no preconceived notions they already harbor about me in their head.  I don’t have to worry about what they say to so and so or how they perceive me.  A total random person that is in the same situation as me.  Maybe if I start going to the fitness center I will be brave enough to strike up a conversation (THAT will be hard for me in and of itself.  I am like a social outcast and have no idea how to just strike up conversations with strangers OR even people really close to me!  I’m a total introvert) with someone already there and see if I can get a support system in place.  Someone that is in the same boat as me.

My wish right now is to get rid of the weight once and for all and not have to berate myself every single moment of every single day.  Hell, maybe I’ll actually start being happier and start taking action to live my life!

 

 
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Posted by on July 24, 2012 in Life, Random Rant

 

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Happy Dance!

I am officially OFF Betaseron!!  HAPPY DANCE..woot, woot…Happy, Happy!!!

I just returned from my neuro appt and she has permanently taken me off Betaseron and put in my records that I am allergic to it in a bad way.  She said I was the top patient of hers with the most adverse side effects.  In fact she thinks I’m special!  HA HA HA  (yes, I am in many ways).

I went in determined to say what I wanted to say about medications.  Guess what?  She agrees that for now I don’t need to be on any medication but I will be monitored.  She kept driving that home that I need to be monitored and if my MS starts showing up that we would talk about getting on a different medication.  I’m okay with that actually.  So, I go back in 3 months for a check-up, I increase my Vitamin D to 5000 a day, and an MRI in January.

I can’t wait for the following to go away again from the Betaseron still in my system:

  1. Eating everything in sight.  My appetite increases ferociously on this.
  2. Muscle fatigue and nasty pain going away
  3. Swelling in my feet and hands go back to my normal swelling
  4. Heat intolerance going back to what was normal for me before all this.
  5. ENERGY to do things
  6. Fatigue going away.  I went to bed at 7:30pm last night and that was struggling to stay awake.  Ugh!
  7. Depression going bye-bye
  8. Stress surrounding all this going away

YIPPEEE!!!!!

 

 
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Posted by on July 17, 2012 in Life, Multiple Sclerosis

 

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Moody Day

I guess the medication is starting to effect me again…even at the lowest dosage.  Today I feel pretty sad and depressed.  On top of that I am angry…very, very angry…and it all stems from feeling worthless.  I have had  problems my whole life with feeling worthy.  Situations that otherwise wouldn’t have even bothered me one iota have turned in to a feeling of utter doom.  Anyone have a clue what I’m talking about?  Anywho, I am trying to state positive intentions in my head over and over and reassure myself.

Positive thoughts. Hmmm.  That is a common phrase I’ve been hearing since being diagnosed.  “Stay positive! ” “Your attitude really plays a role.”  *sigh*  This I know.  But, you know what?  Most of the time I don’t even “think” about my MS.  I don’t wallow in fear or anger or negativity about getting this disease.  It is what it is.  I only think about it when I write this blog or I have to think about it such as when I’m at a doctor’s appointment or when someone asks me how I’m feeling.  If someone asks me, I’m probably going to tell you what you don’t want to hear and it will come across as negative.  You know why?  Because that is how I feel and I’m not going to lie to you and say I’m feeling great.   I think people expect the lies though.  I’ve dumbfounded so many people when I tell them like it is and they get a loss for words.  Or they try to relate it to something in their own life.  *sigh*   I do appreciate their concern….if I feel it is genuine that is….but I don’t react like any ‘normal’ person so you will be disappointed.

There are many other things in my life that may be causing me to be negative.  It’s not like I’m negative all the time.  Oh wait, maybe I have been since being on this medication as it is royally screwing with my body.  Everyone….everyone….has stresses in their life.  Sometimes you will feel like everything is going wrong but other times you think life is going just great.

God dishes out what we can handle.  I must be a extremely strong person.  LOL!

 

 
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Posted by on July 12, 2012 in Life, Multiple Sclerosis

 

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Stressing over Medication

The lab experiment on my body started yesterday morning (more on that here).  I started stressing about this a good 2 weeks before I had to start those damn injections again.  I’ve become bitchy, irritable, lonely, sad, and mad.  One word for this:  STRESS!

I figured I might as well read up on the other medications again for MS.  I’ve done it before but not the in-depth information found on the drug maker websites.  I decided I would start looking up Copaxone because if you look at the side effect summaries you will find that they don’t seem all that terrible compared to the other few available medications.  I am led to believe that with Copaxone I might have a runny nose, swelling at the injection site, and minor annoyances like this. Well, I wanted to see more details so I went to the PubMed Health website since it was one of the top links in the search results..  ( Oh, and try to find a nice looking comparison chart of the different choices and you have to search and search. You can’t.  That is SO annoying.  I should build one and just put it out there for my own uses because I’m tired of searching all over to find something without having to write all the crap down!  The NMSS site does a good summarization but not quite what I want but still…..)

Let me list out the side effects that I am concerned with: ‘may increase your risk of developing cancer or a serious infection’.  Hmmm, that doesn’t sound very good.  It’s amazing that even on the website they kind of hide that information in a sentence rather than in the list format for the other symptoms.  Others that are ‘uncommon’ (but for me, I always get the uncommon side effects it seems) are:  chest pain, fast heartbeat, difficulty breathing or swallowing, very severe pain in the injection site, pain in the back, neck, or any other part of the body, severe headache, vomiting, swelling of extremities, joint pain, confusion, crossed eyes, and tightness in muscles..  These are only the ones that I’m not thrilled with.  There are many others but the ones I listed make me fearful and also worried because with Betaseron some of these are the cause of why I can’t take it anymore (or think I can’t…we shall see soon).

I thought Copaxone was one of the wonder drugs because of not having many side effects.  I was fooled.

What about the other choices then?

Avonex:  Interferon beta-1a rather than the beta-1b I take now.  The big warnings:  depression & suicide, seizures, heart problems, liver problems (oh, well then this is automatically out for me because Betaseron is causing havoc with my liver enzymes), allergic reactions, blood problems, and thyroid problems (I already have that so that can’t be good either).

Extavia:  Interferon beta-1b.  Well, we have to rule that out as it is the same type of thing as Betaseron which isn’t doing well for my body.

Gilenya:  sphingosine 1-phosphate receptor modulator (whatever that is).   Higher doses have a higher risk of adverse effects, heart rate can slow down, lowers the number of lymphocytes in the blood, swelling of the macula (part of the eye), liver problems (what?  Ok then, this one is definitely out for me).  Sounds like a swell time to me.

Novantrone:  mitoxantrone.  This med (an infusion) has a black box warning by the FDA which can’t be a good thing.  Bad things for this one include cardiotoxicity, secondary acute myelogenous leukemia (AML).  Um, yuck

Rebif.  Inteferon beta-1a just like Avonex.  I’ve already ruled this one out for the same ones as Avonex.  Same side effects

Tysabri: natalizumab. Risk of a brain infection.  Okay, that is enough for me to say,’ Whoa there cowboy.  I’m not cool with that!’   Also there is increased risk of liver damage, increase risk in certain infections, and allergic reactions.

These are the choices folks.  There is not one bleepity-bleep medication out there that I would feel comfortable taking. I don’t even feel comfortable taking Betaseron and I know that for 5 straight months it really reduced my mobility and I had horrible joint/muscle pain.  And of course I had high liver enzymes so it was damaging my liver.

This is why I’m stressed out.  This is why more research and funding needs..NEEDS…to be done on this nasty ass disease.  My choices seem worse than letting the disease progress.  I’m a person that my body tends to get every freakin side effect from a drug so my odds in taking any of these – in my own eyes – looks bleak.

P.S.  I am raising money for the MS Walk 2012.  If you would like to donate (and you now know how desperately better medications and a cure are needed), you can do so at my donation page:  click here.

 
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Posted by on July 11, 2012 in Multiple Sclerosis

 

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