Monthly Archives: June 2012

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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Latest Updates – June 22

So what has been happening with me?  Let’s see:

1.  On June 5th, I had blood work taken again.  My arms are getting scar tissue and I wonder how many more times they can actually draw from there.  The young guy seemed to want to keep pushing the needle through  and out the back of my elbow before all 4 vials were taken.  I just sat there and acted like nothing was wrong.  Hey, he complimented me saying I definitely didn’t look my age so I was already in a good mood and liked him. lol!  The results came back that the liver enzymes (ALT and AST) were slightly elevated.  Not much this time but a little.  So my doctor advises to go back on the 19th and repeat the test and just keep my betaseron to 1/2 dosage.

Fast forward to the 19th I get more blood work done.  Both the ALT and AST were right smack dab in the middle of the normal range!  WOOHOO!  I’m thinking that I might be told to increase the dosage slightly and see how it goes then repeat labs again every 2 weeks.  (I think I will be going to get lab work every 2 weeks for the rest of my life!).  On the call from the dr they asked about my pain.  Well, I live with pain every day in the lower parts of my body.  The more active I am the worse the pain will be and can lay me up for 1-3 days after that activity.  On a typical day, I feel pretty good in the morning and by the afternoon I hurt more.  It’s hard to describe the pain.  It’s some muscular and definitely around joints.  It always starts around my feet (because I already have some pain there when I wake up even) and then around my knees.  Nothing I take helps with the pain it seems so I don’t bother anymore.  It is so sporadic as it is.  Anyway, I told them my pain was about a 7 on a scale from 1 to 10.  I hate when they ask that.  I have a high tolerance for pain and I’m not exactly sure what to say.  *shrugs*  So, now I am to not take the medicine – that’s right, not – and call them in a week to let them know how I’m feeling.   I didn’t even wonder why they were asking because ever since I started on the medication I’ve seemed to have gone downhill.  More pain, less ability to do things, etc etc.  One part of me would love not to take the medication but another part of me doesn’t even want to think about life in a wheelchair someday.  Oh, and it doesn’t help that Entertainment Tonight has been having stories on celebrities with MS this week.  It’s too  ‘in your face’ for me.  I guess I’ll just have to wait and see what she says next week when I talk to her.

2.  I’ve put myself on a diet.  After waiting for a diagnosis for over a year, then getting the diagnosis, then starting medication, I put on too much weight.  Not only did I feel crappy because of all the MS stuff, and that my thyroid was messed up, but I also felt really horrible mentally about myself and physically I hated myself and was so uncomfortable.  Sweets and fast food are my downfall. I get addicted FAST to them.  So, I have gone back on the Ideal Protein diet which is the only thing that has ever worked for me it seems.  It eliminates almost all sugars and carbs.  I felt better after only a few days of starting!!!  In fact my cravings are gone.  I made a homemade cheesecake for Father’s Day and took to my parent’s house to celebrate with some of my sisters.  Guess what?  I wasn’t even tempted to eat it.  Now, that is a amazing for me!

I have it in my head that this time I will stick with it until I get the weight all gone.  I’m hoping I will have a big chunk gone by the time my daughter returns from WI for the summer.  I’m not even telling her I’m losing.  I want it to be a surprise.  She doesn’t read this blog (I don’t think) so this won’t let her in on the secret.  😀  So far, I’m down 10.6 lbs in 2 weeks.  YAY for me!!!

3.  My work has been super kind to me and letting me work from home.  I tell you that has really helped.  I can take breaks and put ice on whatever hurts and just de-stress.  Then get right back to work.  I’m very thankful for this…very.  When I need to be in the office (like today and next week) I will be at my desk, so I do what is needed and when it is needed.  I’m thankful for a workplace like I have because they are very flexible for me.

4.  I’ve been getting some narly headaches again.  They were gone for awhile but this month I’ve had 4 doozies (sp?) already.  They suck.

5.  I got some weird tingly, hair in my mouth sensation on my upper lip, right side only, that lasted about 1.5 weeks.  That was weird and strange.  I’m glad THAT is gone now!

That’s about all I can think of for now.  Short post I suppose.  I feel like I’m not quite as negative as I have been in the past many months.  My stress levels seem to be lower and I’m not quite as depressed.  That has probably something to do with the decrease in medication as well.

For those of us with MS, I wish you well.  Always remember to have Hope, Faith and Courage!!!


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Posted by on June 22, 2012 in Life, Multiple Sclerosis


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Update 6/5/2012

So what’s happening with me?  Let’s see:

1.  I had blood work taken again yesterday to check on the liver enzymes.  The prior labs showed that they were back in the normal range.  Well, now they are slightly elevated.  Not as drastic as they were but a little over.  So in two weeks I go again for labs.  Being poked some many times in my vein scar tissue is forming.  So far they are still able to draw the blood.  I imagine some day they will have to try in other locations and I don’t even want to think about where those other locations even might be.  Anyway, I’m to stay on the half-dosage of the Betaseron and my neuro is just hoping my body takes longer to get used to it.

2.  Since reducing the meds I have noticed that depression that I was in has lifted mostly. I still feel it but not like I did.  So, once again, I have another side effect symptom of the meds.  Figures.

3.  My legs hurt.  All day.  All night.  Non-stop.  When I touch any part of my leg from the knee down and even some places above the knee, it feels like my touch is dull.  So obviously I’m losing sensation of some sort.  If I walk around for 1-2 hours (shopping), the next 3, 4, 5 days I’m really hurting when I try to get up out of a chair, walk up or down stairs, and just walking.  I am almost completely unable to get up out of a squatting position without pulling myself up with my hands/arm.  If nothing is around….well, I haven’t come to that because I try NOT to do that.  I will lean over and do whatever rather than squat.

4.  New weird sensation that popped up about 5 days ago and continuing is that my upper lip on the right side only is tingly.  It feels like there is a hair stuck on it.  It was pretty bothersome the first day but now it just is what it is.

5.  I’ve gained a crapload of weight since starting on the medicine.  So, I just started back on the Ideal Protein diet to get rid of it.  I am sick of it….truly

6.  I know have a MS ribbon on my car and wear one of those orange bracelets which I don’t take off. My daughter has one too.

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Posted by on June 6, 2012 in Life, Multiple Sclerosis

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