Defining Slump Week Tysabri

Recently, I have had several people ask me to define or explain “slump week” as it pertains to taking Tysabri. As I sat trying to come up with a “blanket answer”, I realized that there isn’t one.  Each person that has MS is going to have a different form of MS. Their symptoms and ways of dealing with those symptoms will also be different.  Then I thought, “who is the person asking the question”?  Do they have MS? Have they recently started Tysabri and they are afraid of “Slump week”?  Maybe they are trying to explain what slump week feels like to someone else that doesn’t have MS?

While I am always happy to talk with people and try to explain, not everyone is comfortable talking on the phone, meeting in person, or even just reaching out to someone in email.  So, I will attempt to explain it here and hope that it helps answer the question for some of you.

For those of you that are afraid of slump week, let me start by explaining what it is NOT.


It does not mean your MS is getting worse or that you are experiencing a flare up.  It may feel like it in the beginning, because your MS symptoms may be a bit more noticeable.  You may be a bit more “foggy” than normal.  Your legs may feel heavier than usual.  If you fight fatigue, you may feel like you haven’t slept in days even though you just woke up from a full eight hours.  Basically, it feels like your MS symptoms are more pronounced than your personal norm.  Everything feels a bit “off”.

It’s also Important to know that not everyone goes through slump week.  For those that do, it isn’t necessarily a full week of more pronounced symptoms, and it may not happen every time before your next infusion.  If you have MS, you hopefully have learned by now that there are ways to work around your challenges.  Maybe you can’t walk as long, or as far as you used to, but have learned that a cane or frequent breaks can help.  The cool part is knowing that, IT WILL PASS!!!!!

For those of you looking for a way to explain it to someone that doesn’t have MS or has not experienced Slump week, think about your audience and try to use something from that person’s life to explain.  For example, if you are explaining it to someone who is a caffeine addict, ask them to think about the way they feel before they have had caffeine for the day.  What if they had no way to get that caffeine fix?  They would spend a lot of time trying to come up with a work around for it, and that is probably time that they were supposed to be accomplishing something else.  Maybe they would be late for work, because they had to stop to buy some form of caffeine.   Or worse, while they were driving to pick something up they almost got into an accident because they didn’t have enough caffeine to focus on driving.  Of course, this example would not work for someone that doesn’t drink caffeine, but you can try to find an example from their personal life to use.  You can also explain that it’s like having a full week’s worth of Mondays in one day.  Another example is sitting in road construction, you will get where you are going eventually.  It doesn’t actually cause you physical pain, but it does make you uncomfortable.

Ask them to imagine being given a task or several tasks, but not being given the tools they need to complete the task.  Sure you can probably find a way to make it work or wing it, but that is frustrating and tiring, not to mention very time consuming and usually unproductive.

As I sat trying to think of an analogy that would work for everyone to explain slump week, I came up with quite the list of examples of life experiences that cause “regular”people to feel frustrated, or unproductive that you might be able to use when trying to explain slump week.  Ask people to think about how they feel when these things happen to them, then tell them they have to do it over and over again numerous times in a day.  THAT is what slump week FEELS like.  It’s not gonna kill you, but it’s not any fun 😦

Why don’t you work?

*please be advised before reading this…This post contains foul language and a dose of sarcasm*

It never fails, the question will always come up, often more than once.  You may be filling out paperwork for Social Security, medical leave for an employer, or some insensitive asshat comes home from work and says, “Well I worked all day, what did you do?” Or “Why didn’t you get that done?”

Let me start with the basic “easy” answer.  I HAVE MULTIPLE SCLEROSIS

For me, this means:

I have doctor appointments EVERY week, sometimes EVERY DAY of EVERY week dealing with whatever the most pressing issue for the week is. These “issues” include:

  • Urinary and Bowel Incontinence (most often in public of course)
  • Balance and ambulatory difficulties (numb and extremely heavy legs, and almost 0 core muscles.)
  • Short term memory issues and other cognitive fogginess
  • Pain
  • Fatigue
  • Depression….who would have guessed?

When I am not AT a doctor appointment, I deal with Insurance Companies and pharmacies on a weekly basis. This includes:

  1. Borrowing from Peter to pay Paul
  2. Applying for various drug companies financial aid programs. (My copay for Tysabri is $1200.00 a month.  This is after Medicare is billed $35,000 each month.)
  3. Calling doctors to ask them to fill out additional paperwork for the insurance company to explain the necessity for the drug. (even though I have been taking most of the same ones for the same reasons for many years.)

HEY FOLKS, there is NOT a cure for MS!!!!

I just realized that I have more contacts in my phone for medical issues than I do for friends and family 😦

Believe it or not, I also spend a lot of time trying to take care of and HELP MYSELF:

  1. Some form of additional physical activity each day ( walking, stretching, yoga)
  2. Keeping up to date with current treatments for MS symptoms
  3. Occasionally I even shower and Brush my teeth :P.  DON”T LAUGH, some days I don’t even have the energy to do that.

So back to the original question……… “Why don’t you work?”

Here is my Angry answer:

Who says I don’t?  I work harder each and every single day NOW than I ever did when I had a “full time job” working 60- 80 hours a week.  Who the fuck are you to tell me I don’t work?

I wish I could go into work for a set 8 hours a day to the same place, doing the same thing, because then at least I would know what to expect.  I would know that it was going to end at some point.    I didn’t ask for this shit.

I feel like someone has given me the keys to an 18 wheeler and told me I had 2 days to drive a load of cattle from the state of Washington to the state of Florida.  Oh I forgot to mention, I don’t know how to drive an 18 wheeler, nor do I know anything about cattle.  Where is the sense in that?… but you can learn right?  Yes just pencil that in on my calendar wherever you find a free spot.  Please remember that it will take me twice as long  to POSSIBLY retain the new information since my brain tries to store information in its plaque covered areas

I’m not asking for a “cookie” or your pity.  I’m just telling you I don’t need your damn judgment either.  So basically my answer to why I don’t work is……….FUCK YOU….Have a nice day!

 

Waiting for test results

Today I’m here with another random unedited rant. Waiting for test results. I have been trying to keep myself busy doing random things around the house, but in the instructions for the biopsy I am not allowed to do housework, or other repetitive actions. Heh. I also have had to keep this very tight fitting bra on since the procedure. Wearing a bra in itself is uncomfortable, but mine is filled with ice (also on the recovery list), and since I can’t actually do anything (see restrictions) all I can think about is how I want to take this damn thing off. Kind of like when you have to fast for bloodwork, you are hungrier than you have ever been in your life. Or when you were a kid and your sibling would hover their hand above your arm and you screamed “Mom make them stop touching me”, but they weren’t actually touching you?
Speaking of food, I could go eat. I’m not fasting, but I’m also not hungry. See the funny there? It would also defeat my goal for losing weight….. hmmm what else? Bills are paid, laundry, dishes, etc, are done. I tried to watch more word press videos, and to read a bit, but I can’t concentrate…DAMN BRA!!!!
I’ve done good staying off of Dr. Google, so I shouldn’t sit at the computer too long. I still don’t want to call anyone because I don’t have answers yet….. I’ve got it back to the X stitch goal.
Hope everyone has a good day. Friday the 13th has been a favorite day of mine for many years as Good things usually happen to me on that day (whether I know it or not at the time) For example, I found out I was pregnant with both of my daughters on Friday, December 13th. Being young and single on those days did not make it good news, but considering they are the best things that ever happened to me I will take it as good news.
End rant