Category: Medication

Got Meds

I’ve had experiences and phone calls that have tested my patience, pissed me off, bewildered and amazed me in the past week. I have my medication but just to be clear, up to now I haven’t gotten the authorization from the insurance company, so of course it wasn’t filled by my regular pharmacy. In fact, I learned on Friday that the authorization was denied again on Wednesday 29th. I am a member of a Facebook group that consists of women who’ve been diagnosed with MS and sometime last weekend I was scrolling thru and reading one or two posts. I came across one where the person was saying that her insurance denied the same medication and she used Mark Cuban’s drug company and got it. I remembered watching a Daily Show episode where Cuban was the guest and he and Trevor Noah talked about this website that he’d either just started or was about to launch, that offered drugs at little cost to consumers. At the time as interesting as it seemed, I had no use/need for it so, of course I never looked into it. Fast forward to last weekend, I looked it up, saw that the drug was available and read thru the requirements to get it.

Monday started with conversations with my doctor’s office to write a prescription to submit to the site so that I could get my pills from them. On Tuesday I should have known to set my expectation bar very low when it took 4 tries to finally get Freddy on the phone from the patient advocacy group at work. By the time Freddy answered, I was done and laughing to myself at the ridiculousness of the situation – 4tries!! Anyway, Freddy was very helpful, took all my info, the drug info, all the details; I couldn’t ask for a more thorough associate. At the end, he told me that my information was submitted to the advocate team and someone will contact me in 48 hours – not sure when the 48hr clock starts cuz I’m still waiting for a call. On Wednesday, I ordered the pills from Cuban’s site, Cost Plus Drugs. Thursday, I spoke to a rep at my pharmacy, the most helpful person there, who told me that the authorization was denied again the day before and the reason was that my doctor hadn’t sent something they’d requested. Sigh! Later that day, Gilbert’s MA left me a message that said, “Stacey, I’ve given them everything they asked for, they know that you’ve been on this for 12 years and need it. I don’t know what else they want.” Friday, I got an email that the medication had been shipped from Cost Plus Drugs and was scheduled to be delivered on Monday.

By Wednesday or Thursday, I’d started doing a deeper dive into Mark Cuban’s site reading their FAQs and other articles etc. that I found online. What he offers is incredible and EVERYBODY should look into the site to determine if it is a viable option for them. The company was started because “every American should have access to safe, affordable medicines” and that is exactly what they appear to be offering. Now, there is a limited number of drugs available, but it appears that they update and add regularly. You can search for your medicine or you have the option to drill down by “ailment” to find what you need. The first time I accessed, I just searched by drug name but as I started exploring the site, I drilled down by MS and saw that there are 3 drugs available. That’s where you see the costs and the savings for each – and this is where they can blow your mind:

For a 30-day supply:
The retail price of my drug: $1,394.30 Cost Plus price: $11.40
The retail price of MS drug#3: $13,067.14 Cost Plus price: $293.03

Now I always knew that it was all about the money (hell, we all know that and I said so myself in my last post) but how the hell do these people sleep at night?!? How do you in good conscience do this to people??? And guess what? There is actually a 15% markup added to the cost of each drug on Cost Plus- WHAT? It is absolute madness…everybody who can, needs to start using this website. And they don’t even take all insurance right now; they only accept a few plans and mine isn’t one. I had to pay that whopping $53 out of my own pocket. I took my last pill on Saturday and while the feeling of being out of sorts and lethargy eased up, my movements have been quite laboured. I got my package yesterday, took a pill and I’m back on my regular schedule today. I also got a 90-day supply so I’m not even stressing over whatevertheass my insurance company and pharmacy have to say right about now. Big Pharma – it’s just a whole big racket taking advantage of ordinary folk who are just trying to survive!

Go visit the website, see if you can take advantage: Cost Plus Drug Company

hol’ it dong, Stax

Geezanages!

Pressha!

I have been on a medication for the past 12 years. It’s not an MS specific drug in the sense that it is not one that slows down the progression or anything but it is one of the few drugs on the market that targets a symptom (why can’t I ever spell this word on my first type? EVER!) of the disease. That symptom? walking! Soon after it was approved by the FDA, Gilbert and I talked about it, he wrote me a prescription and the rest is history. It’s a twice daily, extended-release pill so I take 1 at 8am and the other just before I go to bed. Some years ago when I was still on my favourite drug throughout this ordeal, Tysabri, and was still going to the MS Center of Atlanta (MSCA), a nurse practitioner suggested that I go down to once a day to see if I really had to keep taking 2. I did that for about a week, if so long, and that’s when I discovered that not only did the medication help my walking, but it also actually helped with my overall feeling of wellbeing – I went back to 2.

So yes, after a long 11 years or so, my relationship with the MSCA came to an end in 2020. Unbeknownst to me at the time I found them, closed my eyes and chose Gilbert to be my doctor, they had a partnership with another neurological clinic with which he was affiliated – I learned over the years and realized that this was the reason i could only see him on Tuesdays. Anyway, in 2020 I received a notice that the 2 institutions were parting ways and I could either stay with the MSCA or go with Gilbert. I actually decided to break up with both of them to support a black, female doctor whom I’d met at the MSCA and had started her own MS Wellness practice. Oh yes, this was perfect, I can support and get the care I need, even though it was a lil ways away from me. Well. I’m not one to complain but the first time I saw her, I actually told her about my experience with her staff – it was that bad…I won’t bore you with details but understand that I’m back with Gilbert at his other clinic! I have a really hard time dealing with incompetence and bullshit in my old age (except when it comes to my name…I just need to deal with that; nothing is going to change. I was actually referred to as “Stacey-Samuel the other day. LOL, that was a first but I digress)

I’ve often talked about my insurance and my realization that it appears to be quite good based on other stories I’ve heard. I really have no complaints especially after I completely understood the terms, how things work etc. That is until now…sigh! The prescription for that same medication above, has to be renewed annually and so at some point every year after I place a refill order (I have to refill monthly), I get a notice from the pharmacy that “we cannot fill your prescription without prior authorization from your insurance company. We’ve reached out; no action needed on your part” and a few days later, “your prescription is being filled and will be shipped on…”Well last month I got the “we cannot fill” notice…okay, no problem but then on March 10th, I got a notice that my insurance “denied the authorization for your prescription.” Wha?!? Action was now required on my part.

Forgive me if the next few sentences lil hard to follow…Sigh…between then and Friday gone, I’ve spoken to the insurance company reps, who’ve said that the issue has nothing to them – it’s the pharmacy, the pharmacy reps who have said that my request “needs additional review” what review? who can I talk to? no one, “they’ll” only speak to someone from your doctor’s office…I’m the kissmehass patient and they won’t talk to me! (this is my gripe to you, I didn’t actually say that to anyone) I told one man at the insurance company, “there must be someone that I can speak to (proper grammar be damned), u understand that the request was denied by my insurance; Aetna, you all.” He paused for a moment, I stupidly thought that I was making sense and some headway, and then said quite calmly and nonplussed, “I’ll transfer you to Caremark now” (the pharmacy). I hung up. On one of the days, I actually told the medical assistant at my doctor’s office “please don’t get tired of me but…”. She’s the one from whom I got the most information when she told me that they wanted additional doctor’s notes and, of course, she said that they were submitted.

At the point that it became critical, she told me that Gilbert wanted me to go down to 1 pill a day to stretch them out. I started doing that last Tuesday and it really sucks. My days have been going by in waves – I’ve been taking it in the morning so that I’m okay and can function alright during the waking hours but toward the end of the day and by the time I get in bed, I really don’t feel like myself and I just can’t put into words how I feel until maybe an hour after I take the next one in the morning. I’m also lethargic pretty much all day…Thursday, I found myself falling asleep in the middle of the workday at my desk – GASP! and that is completely unheard of. I was never someone who is against taking drugs but this one really seems to make a difference; I don’t think it’s mind over matter. I’m down to 6 tablets. Luckily because of a Facebook group of which I’m a member, I have a plan for if I run out that I’m going to set in motion today, but I don’t know if it will work and I’m not looking forward to running out completely. EVERYFRIGGIN thing is about money. Is Aetna tired of paying for this drug after all these years? I know it eh cheap. Are they thinking that it seems that I’ve been on it for all these years and I’m not walking on my own, so their investment is not paying off?? Is it simply that someone somewhere along the line, has not done their damn job??? steups

Anyway…stay tuned…

I Got Botox

I’ve had crow’s feet for a while. Not sure when they developed (is that the right word?) but they’ve been a presence for some time. I turned that age this year, I continue to deal with my disease and I felt the need to…HAH! I JEST…I can’t even go on. I do have crow’s feet but I actually love them; I feel like they enhance my smile. Anyhoo, the point of this post.

As you know, my left side, the more affected side – both upper and lower extremities get stiff. The medical term for what I deal with is Spasticity. In quite basic terms, Spasticity is an increased rigidity of muscles due to brain or spinal cord injury. It is a condition in which muscles stiffen or tighten, preventing normal fluid movement. The muscles remain contracted and resist being stretched, thus affecting movement, speech and gait. A number of muscles in my left hand, arm and leg are in a state of constant contraction hence the constant curl of the hand, bend in the arm and stiffness in the leg. A number of MS patients are afflicted by Spasticity and (my opinion is) that’s one of the reasons that our movements tend to look the same. Over time, I have observed that our movements are so similar and I’ve actually guessed an MS diagnosis correctly once or twice. Years ago, I was prescribed muscle relaxants to help. I was on one, then two, then one (again) medication with varying dosages. Then I started using CBD oil and I was able to decrease from 20mgs 4X daily to 20mgs daily. That is my current dosage and I guess it works for me, although the muscles are still tight and they continue to contract. If you see any pictures of me, you’ll see that left arm is always bent and the hand looks like I’m ready to coff down somebody. Luckily for me, the spastic limbs are not painful and trust me, that fact is not lost on me, so I don’t have to deal with pain on top of everything else.

As it turns out, Spasticity is also treated with Botox. Botox is used to kill the nerves of the rigid muscles, thus stopping them from being in a state of constant contraction. During one of our sessions last year, my Occupational Therapist brought it up and asked her manager to give her opinion and she thought that I was a good candidate for that treatment. I was officially evaluated for it in August this year. Of course, it wasn’t as simple as “you are good for Botox” and “your appointment is…”. We had to get approval from my insurance company and the wait for an appointment was long. Anyway, I went in for my first round of Botox injections with Gilbert on November 16.

I used to think that insurance was a big rip off, especially when I didn’t understand the ins and outs/terms/how it works etc. Years ago, as a healthy person, I used to get angry when they sent my Explanation of Benefits statements and I saw how much they didn’t pay and how much I had to come out of pocket. Over the years, I’ve come to completely understand the lingo, inner workings and I’ve also come to realise that I’m very lucky because my insurance is quite good – I also “stick with the devil I know” because I’ve been with the same company since my diagnosis and boy am I glad, that as a sick person, I have it! Anyway, so I’ve been approved for one session of Botox every three months for a year. That first session included 15 shots into multiple areas of my arm, ranging from my biceps to muscles just above my wrist on my inner forearm. I was a little nervous/scared; it does involve a needle and I had no idea how it would feel altho I’ve seen videos of people sitting quite still like nothing is happening (side note: people look the same way when they get tattoos and I howled, cussed and squirmed the entire time mine was being drawn). It was fine though, once or twice I felt a slight pinch but nothing to write home about. Good news is that it didn’t affect my ability to do anything by the time I got home and it was a normal day.

The thought process is that those overworked muscles are deadened so the patient can work on strengthening the opposing muscles in order to regain some normalcy. So now back to therapy I go. Gilbert wanted me to wait at least 2 weeks before I started so I had my evaluation appointment last week. As far as the reaction to the Botox itself so far? I wasn’t sure if it were mind over matter, my feeling as if my hand is less tense especially when I’m relaxed and doing nothing these days. It was promising that Chrstine, my OT found that there is less tone in that hand during her evaluation. Same with the arm, it’s easier for me to stretch it out without using the other one to assist or propelling my body forward to compensate for the lack of arm reach. There’s still work to do, they both still curl and bend, but they are certainly not as rigid. We will work on continued strengthening over the next few months. My next Botox session is in February, and at that time, based on my feedback, progress shown etc, Gilbert can choose to alter the amount of Botox or the number of shots. Like everything else with this MS, it’s always a trial-and-error process until we find what works.

There you have it. My Botox story – not for my wrinkles but for my wretched disease!

Stax

P.S. Insurance paid 100% which actually quite surprised me but hey! I’ll take the wins when I can.

(my)Life’s Ironies

I’ve said this many times on this blog and anyone who knows me or is around me can attest to the fact that there is always method to my madness. In my apartment, I have things in certain places for a reason. Yes it, depending on what it is, could be because it looks good there but oftentimes it’s because it’s easy for me to get to or, it’s being in that position makes my life easier somehow. Everybody keeps the small garbage can in their bathroom next to the porcelain goddess. I don’t. I remember years ago the parents were visiting and every night I went into my bathroom I’d find the bin next to the toilet and every night I’d move it and put it where I needed it. And then one night, after I’d moved it, Learls came in, picked it up and said, “every time I put this in the right place, somebody moves it.” I took it from her and said, “no ma’am. Every time I put this in the right place, somebody moves it.” She never touched it again. Always a reason for the way I do things and the places where I keep everything in my space.

Setting the stage here:
There is a stool in my bathroom. It’s where I sit to get dressed and organise myself when I have to get ready to do anything. It’s always roughly in the same spot. I went out Saturday and for whatever reason, as I was leaving the bathroom, I pushed the stool much farther away from its regular spot. Why did I do that you ask? Wish I could tell you.
I take a few pills everyday – 1 set in the morning and the other whenever I’m getting ready for bed. I can definitely tell if I’ve forgotten to take either set but forgetting the nighttime set is much worse. I am unbelievably stiff in the morning and getting out of bed and subsequent movements are no fun. As a result, I really try my best not to forget to take those pills.

Saturday gone now:
I went out and as usual, had a great time with the inner circle and J dropped me off a little after midnight or so. I parked Optimus in his spot in my office closet and walked to my bedroom. As I entered my bedroom, I made a beeline for my bed and then thought, shit. Pills. Every now and again when I’m heading out, I take them with me, but Saturday I didn’t – go figure. I turned around and headed for my bathroom and as I crossed the door, I got the strongest scent of soap or something in there that made me feel a little off. And then the nausea started and I could feel cold sweat coming on (I’ve mentioned this numerous times too – my issues related to ms are multiplied tenfold any time my body gets “out of whack”). There have been times in the past when I’ve felt sick; it’s like a wave of sickness (the best way I can describe it) because I feel nauseous and think I may end up throwing up and then 5/10 minutes later, the feeling subsides and it’s like nothing ever happened and I’m as good as can be. Of course, when it happens, I just want to sit and let it run its course – the last thing I want to be doing is, you guessed it, walking! Taking steps at those moments is the most difficult thing and of course, that’s what I was doing Saturday night. GREAT!

And guess what? Had the stool been in its normal spot, I would have gotten to it and been able to sit this thru. But it wasn’t – I’d pushed it back. I was leaning on my bathroom counter, willing myself to keep pushing forward and stay upright. All I had to do was take about two steps and reach out with a small lean and the stool might have been within reach but of course I was also afraid of what could happen if I actually leaned too. I could do neither. Eventually, my knees gave out and I went down. Beautiful! All in all, it wasn’t horrible, I suppose…it was a soft fall; I didn’t go crashing to the floor, I didn’t hit my head, no broken bones or bruises. Truth be told, the cold floor was also just a little soothing; the fall momentarily distracted me from the fact that everything happened because I was feeling sick. I eventually got back up (with help) and made it to the bed where I was trying to go in the first place had it not been for those damn pills!

All’s well that ends well. I can’t say what kind of inner strength I had prior to this disease but I think that it’s okay for me to say that I possess a herculean amount of it now. I think that it’s amazing I don’t cry or feel down more often, just having to deal with my entire situation and some of the shit that is thrown my way on a regular basis. Anyhoo, I gone so…hol’ it dong till next time.

CBD Oil

Cannabis

Disclaimer:I’m no expert and I apologise if my explanation below contains flaws. It’s a basic description in the simplest way I know how.

The cannabis plant produces families of compounds that may fall into one of two categories:

* Tetrahydrocannabinol (THC): the psychoactive component that makes us high.
* Cannabidiol (CBD) – non psychoactive and the component used for medicinal purposes

The CBD is extracted from the plant and used to make CBD Oil which is used for medicinal purposes. CBD Oil may also contain THC but the ratio of THC to CBD is so small that patients experience the healing benefits of the CBD without getting high off the THC. I’m not going to get into the legality debate that is happening all over the US, but it is legal to possess and use CBD Oil in Georgia for a list of diseases, one of which is Multiple Sclerosis. It’s mostly been used to treat the pain associated with MS (in fact, I’ve always heard that smoking weed alleviates pain), but has also found to help with spasticity. Enter Stacey …

My Experience

I’ve been taking a small amount 3 times a day for the past couple months or so. As I mentioned above, it’s most commonly known for alleviating pain but it has also has shown to help with spasticity in MS patients. I was glad to see that because I have no pain (knock on wood), but my left side is spactic – always stiff, difficult to move at times etc., so I was eager to start and to see what my experience would be.  I’m currently on a muscle relaxant (baclofen that is mentioned in the video) to help with the spasticity. Years ago, I was actually taking 2 muscle relaxants – if you’ve been reading my blog all along u might recall a pill I referred to as my sleepy pill, well that was one along with the Baclofen.  I believe that after my first round of Lemtrada, I stopped taking the sleepy pill because I found the spasticity was less severe. I continued taking Baclofen and still do to this day. At one point in the past I was actually taking  it 4 times a day but, also after Lemtrada, I went down to 3. Now remember that everything with this oil is somewhat experimental (for me) so everything’s been trial and error.

Soon after I started ingesting the oil (I put a couple of drops under my tongue), I noticed that my steps seemed more fluid – more natural if u will. I also thought that they appeared stronger. Of course I couldn’t help but think it was all in my head, but J was here in January and he saw it too (the last time he’d seen me was in May).  Hmmmmm. A few weeks after, I dropped a dose of the Baclofen so I was just taking one in the morning and one before I went to bed. Okay, that was fine but I knew that the rhell test would be if I could stop either the morning or night time dose. I’ve mentioned here before that when I don’t take my morning dose, I definitely feel the effects of not taking it. My left leg feels like there are 500lb weights attached to it and I just kinda pull it along where I need to go because of how stiff it gets. Similarly, when I don’t take the night dose, my movements are quite “robot like” when I wake up. I was afraid to stop either dose, because moving around how I just described is no fun, but I knew that I had to…and well, I eh go lie I really wanted to, just to see what would happen. 2 Mondays ago, I took the plunge, didn’t take the morning dose and braced myself for what might have come. Well. I haven’t restarted that morning dose and I’m just fine 🙂 No 500lb weights, no unbelievable stiffness and continued fluid movements. I’m really happy about that and I feel confident saying now that “it’s not all in my head”.

I haven’t told Gilbert that I started taking it and decreased my Baclofen doses yet although he knew that I’d been thinking about it.  Not sure when my next appointment is but I’ll tell him then.  Anyhoo, so time will tell where I go with this long term…we’ll see what happens.

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