MS Teaches Patience

Well, it’s that time of year again.  The time of year that I dread – it’s time to put in my patient assistance application and wait.  And wait.  And wait.  And wait.  Did I mention I have to wait?  One of the first things my neurologist told me when he gave me my diagnosis of Multiple Sclerosis was that stress is very bad for MS.  He was glad that I didn’t work outside the home – because stress is bad for MS.  I should seriously limit my volunteer activities because, stress is bad.  Perhaps I should hand off my responsibilities as room mom of my children’s classrooms because, stress if bad.  Those homebased businesses?  Well, maybe it would be better to just let them lapse and give yourself a break because, stress is bad for MS patients.  Alright already.  I did what I was told and yet – the biggest stressor of my entire year is from the very community that tells me to be wary of stress – the medical community.

I’ve been injecting myself every other night for 4 years with Betaserone.  I’ll post about that experience specifically in another blog.  The decision to go with Betaserone over the other drugs was one my doctor and I made with great deliberation and consideration.  We both agreed that Betaserone was the best choice for my situation (hey, I just realized, I’ve become “The Situation”!!).  My doctor ordered it, the Beta nurse came to my home and showed me how to give myself injections and I started down this path.  Then, my insurance got in touch with me and informed me that this particular drug, the one that my doctor felt was the best for me, would not be covered – unless, of course, I had tried and failed 2 other drugs.  What?  Tried and failed?  Okay – I’ve own businesses of my own.  I get cost-savings.   I even understand it in the context of drug utilization costs – especially in situations like, for instance, reflux (acid indigestion).  Let’s try the lesser expensive options first.  If they fail, well, sorry for your inconvenience, dear patient, but had it worked, everyone would have been happy and we, your insurance company, would have contained some costs, saved some money and been better able to afford the huge bonuses we’re  paying our higher-ups.  But we’re not talking about reflux or any other potentially transient malady.  We’re talking about a progressive, debilitating disease that, unless stopped, or at least slowed, may well cost me my ability to walk, to speak, to think, to breath, to live.  I can’t afford to “try and fail.”  My only option is to try and win.

So I asked my Beta nurse how much the Betaserone would be if I didn’t qualify for patient assistance, the qualifications of which, by the way, the company will not release.  At that time – 4 years ago – she told me the yearly cost was approximately $35,000.  I recently checked again – it’s up to $41,000 per year.  What?  Who can afford that?  Not me.

So the yearly stressor looms every December/January.  Fill out the paperwork and wait.  And hope.  And think about it.  And lose sleep over it.  And wait.  And talk about the “what ifs” with your partner – who also didn’t sign up for this.  And wait.  And stress.

I’m there now – in the holding pattern.  What will I do if I’m turned down this year?  Don’t have a clue.  I’ve decided to push it out of my mind and just keep doing what I’m doing.  Stress really does affect us all.  Certainly I see a HUGE difference in my symptoms when I’m under stress so – I’m choosing not to be under stress.  I cannot affect this situation – I can only choose how to react to it.  I’ll do some yoga, go on some walks, breathe deeply, drink some tea, visualize receiving the good news that I qualify and keep going.  Four years ago this type of thing would have driven me CRAZY!!  It’s still one of my least favorite things to deal with in my life but – MS has taught me a lot of things – among them, patience.

So, what say you?  Have you become a more or a less patient person thanks to MS?  I’m certainly addressing you MS’ers out there – but also, I’d love to hear from the spouses, friends, caretakers, and loved ones.  Does patience come from being a patient?  Or from knowing one?  Or has it cost you your patience?

 

 

 

Special thanks to Keattikorn at http://www.freedigitalphotos.net/images/view_photog.php?photogid=1692 for the beautiful lakeside picture emulating patience.

8 thoughts on “MS Teaches Patience”

  1. I am not a patient, spouse or caretaker but I have gotten to know many people living with MS. I admire your strength, courage and patience. But most of all, I love your attitude! You are an inspiration to me.

    FUMS!

    Daren

  2. Hey there Kathy! sorry to hear that you’re stressed with insurance etc, we dont have those issues here in freezing cold Scotland, we do however don’t have the same care that you do over the pond, I had my annual nuero appointment last march where it was decided that I needed another MRI to determine whether a change from copaxone to some other injectable medication (I can’t remember what they suggested, we did discuss it but 10 months after I’ve forgotten the drugs name) TYSABRI—- that’s the one!! ignore the wee paragraph before! 🙂 anyway——- I read a few things online about the drug and was terrified at the very slight chance that it might give me some crazy fatal brain scrambling side effects! well the stress of waiting for the next mri and my worsening condition seem to make everything so much worse! It’s reassuring that my meds are free as I’m quitting work in 6 weeks and will find finances hard enough! I’m terrified about the future as my Mother lived & died with MS and with the indiscriminate way that MS seems to act and having witnessed it destroy my Mum! Normal life stressers are often hard but the stress that MS brings is awful, avoiding stress with the MonSter is impossible! so as your site says “F.U.M.S” Please excuse my badly written reply to your post!

  3. I appreciate your insight into MS, a disease I know of only peripherally. Your honest and open assessment serves as a good reminder, to sufferers and non-sufferers alike, to breathe deep and find the humor where you can. Plus now I can enjoy visualizing you as The Situation, all tanned, gelled and gold-chained. GTL, baby! And FUMS to the max!

  4. Good morning. Very good post. I seem to always be stressed, and yes it effects my other symptoms. I used to be on Avonex and went thru the same thing each year. One thing that I will never understand is that Medicare won’t cover self injected drugs but will cover Tysabri at many times the cost because you have it administer. Have a good day.
    P.S. I spoke to my nephew yesterday who also lives in Chesapeake.

  5. I think dealing with a variety of symptoms over the years has forced me to be both patient, and taught me to live my life with a sense of urgency. I’ve learned we just never know the day or time when our symptoms will rear their ugly heads again, taking us out of action for what in some cases can be a prolonged period of time. Stress, not that’s a difficult one. When my stress levels go up, my arm and right side responds fairly quickly with numbness spreading swiftly down that part of my body. I think these days, particularly living in the US and dealing with health care issues, it can be difficult to avoid being stress. Just thinking about what’s going to happen to the Healthcare Bill if the republicans win the next election is enough to make me drop a cup! : )

    I’ll be keeping my fingers crossed for your application to come back with a positive result soon x

  6. I am not a patient, but was a mother of a patient, and now I am a sister of a patient. Patients can not have patience. At the worst time of their lives, when they are fighting for their own life, they must somehow pull everything together and become not only the advocate for themselves, but also work their way through the quagmire of what they have and don’t have in benefits. If they are lucky their benefits manager has decided to cover necessary tests and medications. Unfortunately, no one knows what is and isn’t covered until they need their benefits. But isn’t the purpose of purchasing insurance to cover you so when you need it you have it ? Not necessarily….

    In the last two years I have two friends who have married for insurance. Both were diagnosed with different types of cancer after being laid off their long time jobs. They of course couldn’t afford the COBRA payment while laid off so were facing hundreds of thousands of dollars in medical bills if they wanted to treat their illnesses and have a chance at life. Well, neither of them were ready to leave, so they have married friends and are now using their spouses insurance benefits to get well. Even with insurance they each have well over $15,000 that they will still owe and they aren’t done yet. These are the extremes people are having to go just to be well.

    I don’t understand why we, the supposedly great country that we are supposed to be, cannot figure it out like every other industrialized country has to provide coverage to the people. All the people.

    Again, we will wait through this agonizing time, trying to keep your spirits up and your mind on other things. Breathe….. I’m seeing success on the horizon.

    FUMS!!

  7. Kathy,

    Patience, is a virtue, that only comes from awareness and understanding. It can change with mood and emotion. Healthcare is a misnomer, when you have to fight for medicine and care that is available to improve and restore good health, only to be embattled with Insurance provider’s to justify such care, all the while struggling with the added stress and time which is exhausting, all which are counter productive to your over all health. It is maddening the that things cannot be changed easily. It is only through your awareness and understanding of your body, that you know, that taking the time to do yoga, or go for a walk, or enjoy some tea, will help with the stress of the fight. I hope that you hear soon about your approval for the medicine you require.

    Best of luck with your blog, I will most certainly share it with my patients with MS, as a strong support for FUMS!

  8. Colleen keenley

    This is my first time on any MS support group type web site. It is amazing to see that there are similarities with everyone even though the disease presents differently from one to another. I am a fiery Scot and my husband is Irish. We both have been Air Traffic Controllers our whole lives.
    I have read that certain areas around the globe lend themselves to MS. The Celtic areas for one!
    Ryan was diagnosed Christmas Eve. He already has Celiac so we were a bit familiar with auto immune diseases. But never did we imagine that learning to live without gluten would be the easiest part.
    I can tell from everyone that stress is a huge trigger. Well being Air Traffic Controllers hasnt exactly been stress free. Especially since we are Washington D.C. controllers and lost our own plane on 9/11.
    A year and a half ago, I became disabled caused by my job so Ryan has had to care for me. Now I feel responsible for being the stressor that triggered his MS.
    And as most of you mention, the insurance companies perpetuate the stress by fighting you every step of the way. It has taken me two weeks and countless hours on hold to get his first interferon shipped (havent seen it yet) and I had to promise to pay cash just to get it here! After 5 days on hospital infusions to turn his optic neuritis around, he began to digress again and I know he needs those shots!
    I dont know what to expect from here on out. I used to be so afraid of hospitals but now they seem like a second home. In fact, making coffee for other infusion patients was more rewarding than 28 years of landing airplanes. Now I just need to hide my own stress and keep a happy smile while I make my hubby drop his drawers for his injections. I am the type of person who wears her emotions so loudly on her sleeve; and I know that anyone with MS does not need any stress to make it worse. How do I smile outwardly and hide the bad stuff so that I can help Ryan get better?

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