Multiple Sclerosis and Profanity

Boring #MSMommy Update…Yay!

After some time, I am finally taking the steps to fight my MS as I restart my weekly Avonex shots. I have a terrible habit of taking “Holidays” from all the doctors appointments, shots and IVs, all of that crap. Because when I was first diagnosed I was the dream patient. I did whatever the doctor instructed me to do. After all, he or she had spent a lot of time and money on getting the knowledge that they have. Blah blah blah.roberteyerollI was a good obedient patient but after years of being poked and prodded,  the hours I spent reading old magazines in waiting rooms, I have endured countless painful and fruitless procedures, I finally had my epiphany. It’s my body and It’s my life.

bikram-yoga-bow-pulling-poseBlessed? Lucky? I’m not sure but my disease has been very stable the past 8 years, so much so that I was able to move out-of-state twice, meet Mr. Sexy Pants, have a wonderful baby, and move back home. I refuse to let my illness stop me. Been there. Done all of that. If you are newly diagnosed reading this, please know that your life isn’t over with the diagnosis.

There is a lot to be said about diet and exercise. I’m not gonna say it here but there’s a lot.

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My Personal MS Update #msmommy

MEMy friend, Mr. Multiple Sclerosis is still on a steady break. I’m so LUCKY! Take that!

I signed the paperwork Monday, so I should start to receive my Avonex shipments soon. It has been a couple of years and I’m not looking forward to it. Is it gonna make me feel yucky? Yeah most likely. How will it affect me and my taking care of the little one? How long will the side effects last? One day? Two? How is my Ibuprofen inventory?

I will find out soon, I guess. Eeek.

I am happy to be back on some sort of MS treatment though. Who knows when my luck will run out. Better safe than sorry, right? I’m back to the grind.

MRI Could Stand for…

Most Rude Invention? Magnificent Round Igloo? Molecular Re-scrambling Invention? Mediocre…I got nothing.

I’m having my second one done today. I have one every 5 years or so, only my new neurologist Dr. Hot Pants would like to see a spinal cord study this time. So I get to play “Pretend I’m not having a muscle spasm” or my favorite, “Oh Sh**, I think I got to pee” twice this year.

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#MSDailyLiving tips

  • Sleep is important! The body NEEDS time to recover from all of its hard work. And having MS is very hard work. Without the recovery time, your symptoms will compound and worsen. It never fails if I have a couple of bad nights in a row, then there will be an inevitable fall in my future.
  • Listen to your body. I’m not trying to insult anyone’s intelligence with this one but I know that sometimes on days that I feel good I will get up and start cleaning or whatever project is going on at the  time and the next thing I know I’m exhausted. I walk hunched over too tired to straighten my back, legs will be burning and the only thing on my mind is “SIT DOWN!” The Point: TRY to catch yourself from getting to that level of fatigue. Recovery from day time overexertion is the worst! I try to avoid it.
  • Make life work around YOU. Washing Dishes? Use a bar stool. Putting on pants? Sit down to put on your clothes. It embarrassingly took me a while to figure that one out. We are taught at such an early age a “way to do things” that it becomes seared into our brains. Think outside of the box to get what you need to do done for the day and get it done safely.
  • Speak up. Multiple Sclerosis is on some days an invisible illness that is completely unknown to strangers and easy for loved ones to put it in the back of their mind. We are all human. I have on many occasions had to remind family and loved ones that I know I make having MS look cool and easy (HA!) but I’m struggling and I need help.
Take That MS!

Take That MS!

Thank you for taking the time to read my post. Do you have any tips?

Back to the MS Grind

I survived my first Neurologist appointment of three years. It looks like I will be going back onto Avonex. I’m “sticking” with what has always worked for me. Horrible pun was intended. Sorry.

I also have a ton of MRI time I will be dealing with in the near future. We gotta check to see what the lesions are doing. The last MRI I received was clear, meaning you couldn’t see a single one. It was like they had disappeared or by some miracle healed but my doctor quickly corrected me by explaining the science behind how the imaging of the MRI worked. And how in fact they are still there. Lesions are scars. Scars do not heal.

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Back to the Grind! And thanks for reading.

How Secondary Progressive MS is treated according to the NMSS. *Sigh*

I have a new neurologist appointment today and decided to do a tiny bit of research. I haven’t been on an interferon for two years. A lot of stuff has happened since then and I’m getting ready to come back from my medication vacation.

“There is evidence that our disease-modifying drugs, particularly Rebif®, Betaseron® and Avonex®, have some impact on slowing down secondary-progressive MS.”

  • Disease-modifying drugs
  • The disease-modifying drugs regulate the immune system in a way that appears to correct some of the abnormalities that may be fundamental to MS progression. I think of it as changing the conductor to make an orchestra sound better.
  • Chemotherapy drugs
  • Chemotherapy drugs can also slow down progression. Novantrone® is one of them, and while it has a lifetime dose limit to avoid heart damage, it is an effective option in secondary-progressive MS. In general, the chemotherapy drugs are not as targeted as the disease modifiers. Chemotherapy is more like firing the whole orchestra and hoping that management hires new players who won’t make the same mistakes.
  • Plasmapheresis
    Some physicians have used plasmapheresis for secondary-progressive MS, with mixed results. There is little evidence to support its use in either primary-progressive or secondary-progressive MS. In plasmapheresis, the plasma, or liquid component of blood, is removed and replaced with an artificial plasma. It may help because this removes all the immunoglobulins and other immune substances that are suspended in plasma. This treatment is generally reserved for people with severe, acute MS attacks that don’t respond to intravenous steroids.
  • Bone marrow transplantation, also called “autologous stem-cell transplantation”
    Bone marrow transplantation is a lifesaving treatment for certain cancers, especially leukemias. In bone marrow transplantations, people are given infusions of their own bone marrow, which was first extracted and treated. Chemotherapy and sometimes whole-body radiation are used to wipe out the person’s immune system before their treated bone marrow is given back. It has produced some good results in MS, usually for younger, less disabled people. But others have seen their MS return, and more progression. And, sadly, a few have died.”

If you would like to read more of what the National Multiple Sclerosis Society has to say about secondary progressive MS. Here is a link to their info.

http://www.nationalmssociety.org/about-multiple-sclerosis/progressive-ms/secondary-progressive-ms/how-spms-is-treated/index.aspx

MS Advocacy

Thousands of Multiple Sclerosis patients are getting worse each day, when currently used medications are not working for them or their body refuses to accept the medication.

Another Option is needed and this Option Should be Lemtrada

The FDA on December 30, 2013 Denies the use of Lemtrada for MS Patients. THIS was A sad day for people with more active Multiple Sclerosis.

Lemtrada has been approved worldwide, but not good enough for us it seems, in the USA.

We are more than 400,000 strong (living with MS) in the USA
WE NEED YOUR VOTE to give another OPTION to those that Can benefit from this medication; hoping to keep them from severe disability.

YES, WE NEED YOUR VOTE.
Also we need you to write directly. WE NEED YOU TO send emails. –
We need this request to go Viral —

• Let us FLOOD the OFFICE of this FDA committee with emails, WITH the information shown above.
• Please copy and paste what is tyoed and attach your name to that email and then send to: druginfo@fda.hhs.gov where the communications are reviewed and forwarded to appropriate individuals for response.

In contacting the office of Ms. Glendolynn Johnson, who staffs the Peripheral and Central Nervous System Drugs Advisory Committee, I was advised that the Moveon.org petition, and all communication voicing consumer or prospective patient views, should go to druginfo@fda.hhs.gov where the communications are reviewed and forwarded to appropriate individuals for response.

That’s why I signed a petition to FDA Drug Info and Ms. Glendolynn Johnson, Peripheral and Central Nervous System Drugs Advisory Committee, which says:

“We seek an FDA reversal on their December 30, 2013 decision to NOT approve Sanofi’s Lemtrada, a Multiple Sclerosis Treatment. Patients needs this Medication-option Approved”

Will you sign the petition too? Click here to add your name:

http://petitions.moveon.org/sign/thousands-of-multiple?source=s.fwd&r_by=9845429

Thanks!