Copaxone anniversary

Today is my second anniversary on Copaxone. I have not missed a dose in these two years and I have been so fortunate to not have any relapses. Woohoo! While everyone else is getting very excited about the approval of oral disease-modifying drugs, I am sticking with what works for me. As we say in Oklahoma, "If it ain't broke, don't fix it!"

Nonetheless, I am thrilled that oral meds will soon be available for those sisters and brothers who have difficulty or no response from injections.

I hope the summer finds everyone having at least one really fun thing to anticipate. Stay cool!

Peace,
Kelley

It's My MS-iversary

One year ago today I received my "official" diagnosis of MS from a neurologist. What a year it's been! When I reminded GH about it today, he said, "Un-gratulations!" What a thoughtful GH!

In retrospect, it really hasn't been a bad year. I have been extremely fortunate, in that I have not had any exacerbations. Some minorly annoying symptoms, yes, but nothing too troublesome.

What have I learned from my first year of living with MS? A lot. I slow down and listen to my body when it speaks (at least most of the time). I have tried to make some lifestyle changes (made my Copaxone injection a part of my daily routine, tried to quit smoking, but have fallen off that wagon) and will hopefully make more, one babystep at a time. I have learned to be proactive and be my own advocate when dealing with my medical professionals and how to yell at insurance companies without cursing at them. I have learned to become part of the political process in a more active role than I have ever played before.

I have learned where to get reliable information about MS symptom management and support. The MS blogosphere is a fantastically informative and encouraging space. I have become active with my chapter of the National MS Society, having attended workshops and fundraising events and I fully intend to do more in the future.

I have learned that there are comfortable, stable and cute shoes for low prices. I am constantly reminded of how many people in my life care about me and want to help. I have also developed a deeper personal faith in God, who continues to smile upon me.

The main thing I have learned is just how incredibly blessed I am. Thank you all for helping me along this road less traveled. I could have curled up in the fetal position and stayed there for the last year, but with everyone's help and encouragement, I came out to play.

Peace,
Kelley

Copaxone Drama

In my early thirties, I realized that my daily life was my own personal soap opera. When I had that epiphany, I vowed to keep drama onstage and remember that I cannot control everything. Since then, I have kept a majority of drama onstage, with a few exceptions.

Somewhere at the end of January, I received my monthly call from my specialty pharmacy to schedule delivery for my Copaxone. According to my understanding, after January 1, my copay would be $150 per month, with Shared Solutions paying $50 of that, leaving me with a balance of $100. Imagine my shock when the person on the other end of the phone line told me my total would be $500+!!! I calmly told her not to ship the Copaxone and hung up the phone. Needless to say, my blood pressure skyrocketed, and I was positive my head was about to explode. Mind you, I do not have any high blood pressure problems. I advised GH of the situation, lit a cigarette to calm my shaking hands to begin the marathon telephone session to multiple entities. (Dear readers, please do not comment about my smoking vice. I know it is unhealthy and I am making plans to quit for Lent.)

First call was to my health insurance company's pharmacy line. Everyone with whom I spoke was very polite and helpful. Problem number one: the specialty pharmacy is now considered out-of-network, therefore my Copaxone would cost $150 per month copay PLUS 20% of the actual cost of the medication. WTF? When I received notification of the new specialty drug changes in November, I called the insurance company and was assured that my current pharmacy had been purchased by a larger company that was in the network. There would not be a problem. Yeah, right. The gentlman gave me the number to the larger network pharmacy and wished me luck.

Call number two went to the health insurance company proper. I informed the very nice lady that I was misled and misinformed by their representative. She kept me on the phone for about 40 minutes, trying to resolve the issue. She apologized profusely, and stated that most of the problem was with the terms my employer had negotiated with the insurance company. She wished me the best of luck.

Third call was to Shared Solutions. As always, the people there were incredibly helpful and assured me that they would take care of transferring my prescription to the new pharmacy. However, said new pharmacy was not a participant in the Shared Solutions discount program, so I would have to pay the entire $150 copay each month. Fine, just get my drugs, already! Then she said she would forward my information to Chronic Disease Fund to see if I qualified for their Copaxone Assistance program. OK, sounds like a plan to me.

I finally calmed down. GH sat there in amazement, saying he couldn't believe I had handled all of that without yelling, screaming or cursing. He usually handles these types of situations, as he is a professional buyer for a school district and negotiates very well. However, in this instance, he stepped back and let me fight this battle. Although if I got overwhelmed, he was ready to jump into the fray with teeth bared.

The next day, I received a voicemail from Chronic Disease Fund. They e-mailed the requisite paperwork; I filled it out and faxed it back to them. A few days later, I was informed that I qualified for an emergency something-or-other and they would pay up to $2500 of the cost of my Copaxone for this shipment. Awesome!

Then the new specialty pharmacy called to set up delivery. By this time, I had approximately 7 days of Copaxone left. He set up the delivery and told me I did not need to pay anything! More awesomer! (Yes, I know that's grammatically incorrect, but I like making up new words, just like Stephen Colbert's "truthiness").

I received my Copaxone last week and did the happy dance. Then I received the multitude of forms from CDF to fill out for long-term Copaxone assistance. I sent them 18 faxed pages and crossed my fingers. However, I had a sneaking suspicion that our income level was too high to be helped on a long-term basis. I was correct in this assumption. I received a letter yesterday informing me that my application had been denied. Bummer!

Honestly, I wasn't terribly disappointed. There are so many people in the MS community who truly need this assistance. GH & I are blessed with employment, insurace and otherwise good health. We are not going to bitch too much about $150 per month. The results are priceless.

It's a New Year! And a New Copay! Bastards!

Thanks, health insurance company. Because I take a specialty drug, I now must pay $150/month copay for my Copaxone, as opposed to the 2008 copay of $50/month. Bastards!

I knew this was coming in November and have adjusted the budget with GH accordingly, as well as counting this new expense in re-figuring my flexible spending account for 2009 health care reimbursements. When I received the lovely package outlining our new options for 2009, I really nearly started screaming at someone. There was a separate brochure, all pretty and shiny, outlining the drugs considered "specialty" drugs. Before this list, there was a paragraph explaining why these drugs are so expensive. And, I kid you not, the first sentence says something to the effect of, "injectible drugs that treat conditions like multiple sclerosis." I was feeling a bit persecuted. Bastards!

I contacted Shared Solutions and they sent the paperwork to enroll in their discount program. I was accepted, so they will pay $50 of my copay. So now, my copay for 2009 is only double what I paid in 2008. Bastards!

All bitching aside, I am grateful that I have the income to pay for Copaxone. But what about those who can't? I know there are other programs for which they may qualify, but how do they find out about them? Since I began my MS journey, so many people have told me that you must be proactive about your health care. It is so true!

To all my dear readers, may you have a very healthy and happy 2009!

Peace,
Kelley

Cognitive Triumph

On Tuesday, I received a letter from the university where I work. This letter was from the head of the English department, my major. I was informed that the entire English department faculty had met earlier in the fall to vote on scholarships for English majors. I was awarded a scholarship that is given to the "best" students in the English department.

Well, I was a bit floored. You see, I decided to take advantage of my employee benefit of free tuition beginning in January of 2005 and decided to go back to school for an English major. Since so many of the credits from my other collegiate life transferred, all I had to take were major courses. So I've been chipping away, one course a semester, since that is the only way I can pursue this degree, working full=time and staying married, LOL!

I called the English department the next day to see what this scholarship entailed; I was hopeful that I could get some cash to buy my books for next semester. I was told to call the Financial Aid office. They told me that this particular scholarship is for tuition only and will be applied to my tuition before my employee tuition benefit kicks in. Oh, well. At least I was recognized for my abilities. That really means a lot, especially since my MS diagnosis. It's really nice to know that I can compete intellectually with students half my age, literally.

On a completely different note, I read about an interesting clinical trial that combines Copaxone and estriol. It looked like a no-brainer, win/win to me. You either receive Copaxone and estriol or Copaxone and placebo. I contacted the closest facility conducting the trial via phone and e-mail. Unfortunately, I do not qualify since I am already taking Copaxone. Bummer! :( At least I tried!

Anyone out there involved in this trial? It sounds really exciting!

Peace,
Kelley

Six month followup

How did I get here? Start at So it begins...

So, I'm skipping ahead to the present. I'll fill in the gaps later.

I saw my neurologist yesterday and learned that I have NO active lesions and no new lesions! Woohoo! Copaxone seems to be working well for me. I had a gut feeling it would, since my mom has been on it for seven years without a relapse. Although I had some bothersome site injection reactions for the first four or five months, they have substantially subsided. I guess my body has become accustomed to the medication. Yay! The only new thing I will try is some medication to keep me from getting up at all hours of the night to pee. Sorry if this is a little TMI for you gentle readers. I know you other MSers get it. ;)

I've also started physical therapy for a problem I'm having with my left shoulder. I don't know how much is MS and how much is from a broken collarbone in 1995 (a great story I'll post some other time). It's probably a mixture of both. Anyway, the therapist gave me toys to take home to help me do my homework exercises. I am trying to stay away from pain or muscle relaxing medications. They make me stupid! If the pain gets to a point that I cannot tolerate, I will try medication. I am a firm believer in "better living through modern chemistry." I know that is almost contradictory, but that's me! ;)

Needless to say, the Goat-Hub (my wonderful husband who does a fabulous Goat-Boy impression) and I were very pleased with the news. Goat-Hub always goes with me to the doctor, in case I forget to bring up a point. However, we had made a list of symptoms, questions and issues I have experienced since my last appointment. Since my handwriting is atrocious, even before MS, I typed the list. The doctor was thrilled that I came so prepared and asked for a copy to put in my file. I try to be a good patient and proactove as much as possible. It is really nice when that is appreciated. I have heard so many horror stories about impatient and unsympathic physicians and I am so glad I have caring doctors.

So, I don't see the neurologist again for six months, unless I have a problem. Hopefully, I won't!

Peace,
Kelley