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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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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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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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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.

 
3 Comments

Posted by on July 11, 2012 in Multiple Sclerosis

 

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Update-a-roni

This morning I started up on the Betaseron shots again.  My doctor is using me as a lab experiment to see if it is the medication that makes me feel like crapola.  (Why, yes, I know it is.  Let’s just go with that).  I’m on .25 dosage which is not much at all.  I hate throwing out good medicine that is still in the vial.  It seems like a waste of money but you do whatcha gotta do.  I’m totally stressing about what new medication I will be prescribed because of the whole insurance thing with what they will cover, etc (and the nasty copay I may have).

I was doing great on my diet up until about a week (plus another half but I didn’t really want to say that.  Hey that cats out of the bag now!  ((Who put the cat in a bag?))).  Today I am trying to be good and stick to the plan completely. After about 3 days all the sugar cravings (or carbs) will cease and it will become easier.  I’m not sure why I went off the plan.  I was doing great.  Oh well, one of those things I guess.   I know I definitely felt better on it and some aches actually came back when I started eating gobs of sugar again.  So, I need to remember that I experience pain when I eat bad things.  Sugar addiction / carb addiction is REAL, PEOPLE!  Nasty stuff (but tastes so yummy).

Current symptoms I’ve been having that I relate to MS:

1.  While walking to my car, all of a sudden, I get this strange sensation in my head and I start leaning forward and to the left and start walking at an angle rather than straight, which is what I was trying to do.  Luckily it lasted for about 6 steps and was over with.  My head still felt weird for a few hours though.

2.  I seem to not be lifting my right foot up high enough when getting in or out of cars.  I’ve stumbled 5 times in the past couple of weeks.

3.  My whole body jerks when about to fall asleep. I have no idea if this is MS related but a couple of nights ago it did it three times in a row.  VERY annoying.

4.  My energy is still with me since being off the meds.  I’ve been able to do so many things.  I can’t believe for 5 months I lived with feeling like crap.  It feels good to feel somewhat normal.  (Although many will tell you I’m not very normal.  *giggle*)

I’m starting to feel stressed out again or should I say anxious.  There are many reasons.  I’m pretty much in a sad state of mind and have been for a long time now.  That definitely takes a toll on me and stress in life for me.

 

 

 
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Posted by on July 10, 2012 in Life, Multiple Sclerosis

 

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What’s new with me – June 28, 2012

I hardly blog anymore it seems.  I used to have another blog and was regularly posting but then I just thought to myself, “Self?  Why are you doing this?” .  I couldn’t really come up with a reason so I just stopped with the other blog.  Sometimes I miss it.  It was my outlet to just blah, blah, blah on anything I wanted with no rules.  I guess I started to feel the pressure (pressure from myself) to write as often as possible.  It was stressing me out and you know how stress affects MS.  Anyway, here is an update on my life with MS (sucks, truly does).

1.  My dr. took me off the Betaseron on the 20th of June.  She asked me to call her a week later and give an update.  Guess what?  I started feeling better by the 22nd and Saturday I felt magnificent.  I did so much around the house!!  I felt so close to normal it was unreal.  The pain in my joints/muscles were only a minor twinge now and again.  Before I wasn’t able to squat down or get down on the floor and then get up very easily by myself.  Saturday I was on the floor laying out some quilt squares AND GOT UP WITH NO PROBLEM!!!!!  Oh, it was so very nice to feel good.  Best news…..the feeling continued most days.  I was a little sore on Sunday and I think that was from just doing so many things on Saturday.  I also went shopping for about 3 hours and that always makes the pain start up.  However, the pain didn’t get to the extreme that it was in the past and I wasn’t laid up the following day.

On Wednesday I called the dr to give the update. I told them that my pain level was a 1 or sometimes a 2 but only twinges, whereas before it was a constant 7 or 8.  She is having me stay off the med until a week before I go see her which is the 17th.  She believes the medicine was causing the pain which I don’t doubt at all.  I’m not really looking forward to even going back on it but it will just be the .25 dosage amount instead of the .50 which I was doing.

2.  I’ve been having horrible headaches every day for this entire month it seems.  I’m not sure if it is related to not taking the betaseron (withdrawal?) or not but they are much worse since I’ve stopped that.  I’ve tried ibuprofen and acetaminophen and nothing takes it away.  A cold washcloth on my forehead does the most good and I seem to be sleeping with it now.  I should just duck tape one to my head every day while I’m awake too but that might look a little strange!!

I know the headaches aren’t being caused by caffeine because I have stopped drinking anything but water since the 5th.  I’ve reduced the amount of sugar I’m eating also. It’s all part of my plan to get rid of this weight for once and all.  (I’m a little discouraged though since I’m plateauing right now but I think I’ve shocked my body into starvation mode since I eat very few calories each day.).  So far I’m down 11 pounds and I can tell that is making me feel better.

3.  It will be 104 degrees, or there abouts, today.  The heat really affects me with the MS stuff.  I’m hoping I don’t trigger anything when I’m briefly outside to just get in the car and go to the next destination.  I should have just stayed home since this headache today is a killer.

So that’s what is new with me for now.  I like feeling better but I worry about what the next steps will be after betaseron.  No medicine seems to be a great choice and although my insurance is fantastic I worry about what money it may cost me out-of-pocket.  I’m hoping nothing.  With me, it seems that any medicine I take I’m that one person that gets all the side effects.  Every time.  *sigh*

 
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Posted by on June 28, 2012 in Multiple Sclerosis

 

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