Getting Help With Prescription Costs

The cost of prescription medication is astronomical, even if you do have health insurance. However, because many Fibromyalgia sufferers are unable to work, a lot of us are left uninsured. I was fortunate enough to get Medicaid for one month. But just one month!! Because my Medicaid runs out at the end of this month (August), I have been conducting an exhaustive search of companies and agencies that offer help in paying for my medication. Being on a fixed income with my Social Security Disability starting in September, I don’t want to spend half of that check on medication when the mortgage, car payment, utility payments, etc still need to be paid on a monthly basis. As my 21-year old son adequately puts it, “Being a responsible adult sucks!”

Regardless, it’s something we all have to do. So I have compiled a list of the companies and agencies I have found that offer assistance in paying for medications:

Needy Meds: NeedyMeds.org has information on medicine and healthcare assistance programs. They also offer a FREE drug discount card to take to the pharmacy and receive up to 70% off your medication costs. I have found it to be a one-stop shop to find medicine assistance programs. They also have healthcare assistance programs listed on this site. If I find more of the same, I'll post them in another blog.

Patient Assistance: Another free service. Sign up, enter in ALL your prescriptions, and the site will find assistance programs and coupons for the medications you entered. They also offer a FREE drug discount card to use when picking up your prescriptions!

Rx Assist: "Patient assistance programs are run by pharmaceutical companies to provide free medications to people who cannot afford to buy their medicine. RxAssist offers a comprehensive database of these patient assistance programs, as well as practical tools, news, and articles so that health care professionals and patients can find the information they need."

Partnership for Prescription Assistance: "Helps qualifying patients without prescription drug coverage get the medicines they need through the program that is right for them. Many will get their medications free or nearly free." (updated 08/19/2009)

Free Rx Plus: "Free For All® Inc. is dedicated to helping you control your healthcare costs we have discounted programs, providing FREE access to Prescription Medications, Imaging Service and Lab." (updated 08/20/2009)

Dispensary of Hope: "A not-for-profit network of dispensing sites, sourcing partners and financial partners that assist people without prescription drug coverage. The network provides short-term and long-term assistance to those under 200 percent of the poverty line. Some estimates say that nearly 10 percent of our nation's population lives in this bracket every day."

Walgreens Prescription Savings Club: I signed up for this one as soon as I lost my health insurance. It has saved me at least 50% of my medication costs! There is an annual fee of $20 to $35, however.


That’s what I’ve found so far! The first three listed are FREE databanks of a myriad of programs that can help you pay for your medication. I am updating this blog post regularly with names and URLs of any new programs I find. They are also being added to my "Links" section on the right side of this page.

(((Gentle Hugs!!)))

Jessica

Vitamin D and Chronic Pain

Pain Treatment Topics (click on link) has some very interesting information regarding the link between a Vitamin D deficiency and chronic musculoskeletal pain.

There are several articles to read regarding Vitamin D, as well as some case study information on Vitamin D deficiencies in people with Fibromyalgia. 

It is important to remember that Vitamin D is NOT an analgesic (pain reliever). And, of course, this information is intended only to educate and NOT diagnose. It is safe to take Vitamin D with medications, from what the documents located at the above-linked URL state. However, please talk to your doctor about how much Vitamin D you should be taking.

Be well, and be well informed!

(((Gentle Hugs!!)))

Jessica

For our Caregivers

(Click on image to go to Caregiver Survival Tips)

When we are caregivers, it often is not the physical work that is so exhausting. It is the emotional work that we do every second as we strain to be present to another’s process. - Anonymous

Read "Compassion Fatigue" from Oprah Magazine

Are we making ourselves worse?

Fibromyalgia is hard enough, but are we making ourselves worse - or putting ourselves in potentially lethal situations - with the myriad of medications we take to control our symptoms?

In an effort to research and understand my own changing symptoms and worsening condition, I have come across two drug reactions of which chronic pain sufferers should be made aware. One is potentially lethal and something of which I had never before heard: serotonin syndrome.

The following information is gathered from various websites, to include WebMD and Wikipedia. This information is for educational purposes only and is not intended to diagnose. Please, please see your doctor immediately if you think any of these could apply to you! We wonder why we never seem to recover - this could be why!

Opioid-induced Hyperalgesia

Opioid-induced hyperalgesia (OIH), also referred to as opioid-induced pain, refers to a phenomenon whereby opioid administration results in a lowering of pain threshold, clinically manifest as apparent opioid tolerance, worsening pain despite accelerating opioid doses, and abnormal pain symptoms such as allodynia (pain due to a stimulus that does not normally provoke pain).

In other words: patient take opioids, patient begins experiencing a lower pain threshold, patient seems to build up a tolerance to the pain medication, the pain gets worse even with increased dosage and patient experiences pain from stimuli that should not cause pain.

Examples of opioid analgesics:

buprenorphine (Buprenex)
butorphanol (Stadol)
codeine (Tylenol with codeine)
fentanyl (Duragesic)
hydrocodone (Vicodin)
hydromorphone (Dilaudid)
methadone (Dolophine)
morphine (Astramorph)
oxycodone (OxyContin)
propoxyphene (Darvon)

Again, this information is intended to inform – not diagnose. If you feel you are taking a lot of pain medication and the amount you need just to be comfortable is increasing – and that the medication is no longer working for you – see your doctor immediately. There is some information about the rotating of opioids (regularly changing the medication taken) to avoid opioid-induced pain.

This is how I came across this information: I first heard about this reaction in an episode of House (of course), in which a patient suffered from chronic, debilitating pain (sound familiar?). Opioid-induced pain was one of the many diagnoses. While I saw myself in the patient depicted, I did not see the given diagnoses in me.

Last week, I told my Momma that my medication wasn’t working for me anymore. I spend my days in bed, writhing in pain, crying, praying for some kind of relief, and wondering how I am supposed to continue to exist while suffering so.

Then, I run out of Percocet…and I didn’t have the funds to pay for my new prescription. As I waited for Medicaid to kick in (see previous post), I took Vicodin. The Vicodin was half the dosage of the Vicodin I used to take before being put on Percocet, so I did not expect to experience any relief. The first couple of days were hard, very hard. The pain in my back, hips, and legs was crushing (as it always seems to be). However, the pain started changing! After three days or so, no longer was I writhing, crying, and screaming because of the pain. It was still there – and don’t get me wrong, it was still unbearable – but it was different. And, amazingly enough, it was almost controllable!

It didn’t occur to me at first. Over a few days, even through severe cold/flu symptoms, I noticed the change in the way I could move and in the amount of time I could wait before taking my next dose. Then it occurred to me that my worsening pain could be the result of opioid-induced hyperalgesia. It makes sense, it fits, and it’s something I will be discussing with my doctor immediately.

I did get my refill of Percocet today. However, I am now cutting the pills on the scoring line to reduce the amount of medication I take until I see my doctor to discuss changing and rotating my pain medications.

Serotonin Syndrome

Serotonin syndrome is a potentially life-threatening adverse drug reaction that may occur following therapeutic drug use, inadvertent interactions between drugs, overdose of particular drugs, or the recreational use of certain drugs. Serotonin syndrome is not an idiosyncratic drug reaction (drug reactions which occur rarely and unpredictably amongst the population); it is a predictable consequence of excess serotonergic activity at central nervous system (CNS) and peripheral serotonin receptors.

According to the Mayo Clinic, number of over-the-counter and prescription drugs can lead to serotonin syndrome, especially antidepressants. Illicit drugs and dietary supplements also can cause the condition. These drugs and supplements include but aren't limited to:

Serotonin reuptake inhibitors (SSRIs): antidepressants such as citalopram (Celexa), fluoxetine (Prozac, Sarafem), fluvoxamine, paroxetine (Paxil) and sertraline (Zoloft)

Serotonin and norepinephrine reuptake inhibitors (SNRIs): antidepressants such as trazodone and venlafaxine (Effexor)

Bupropion: an antidepressant and tobacco-addiction medication (Wellbutrin, Zyban)

Monoamine oxidase inhibitors (MAOIs): antidepressants such as isocarboxazid (Marplan) and phenelzine (Nardil)

Anti-migraine medications: such as almotriptan (Axert), naratriptan (Amerge), sumatriptan (Imitrex) and zolmitriptan (Zomig)

Pain medications: such as fentanyl (Sublimaze), meperidine (Demerol), pentazocine, (Talwin) and tramadol (Ultram)

Lithium: (Eskalith, Lithobid), a mood stabilizer

Herbal supplements: including St. John's wort and ginseng

Over-the-counter cough and cold medications containing dextromethorphan (Robitussin DM, Sudal DM)

Anti-nausea medications such as granisetron (Kytril), metoclopramide (Reglan) and ondansetron (Zofran)

Linezolid (Zyvox), an antibiotic

Ritonavir (Norvir), an anti-retroviral medication used to treat HIV/AIDS

Taking any of these medications concurrently could increase your risk of serotonin syndrome!
Serotonin syndrome symptoms typically occur within several hours of taking a new drug or increasing the dose of a drug you're already taking. Signs and symptoms include:

• Agitation or restlessness
• Confusion
• Rapid heart rate
• Dilated pupils
• Loss of muscle coordination or twitching muscles
• Heavy sweating
• Diarrhea
• Headache
• Shivering
• Goose bumps

Severe serotonin syndrome can be life-threatening. Signs and symptoms include:

• High fever
• Seizures
• Irregular heartbeat
• Unconsciousness

While the Mayo Clinic states that the symptoms present shortly after starting a new medication, I feel it is imperative that you see your doctor if these symptoms present at any time while you are taking the medications (or similar medications) listed!

While I would be happy to answer any questions about these drug reactions, I strongly urge you to see your doctor if you feel either of these could be affecting you. I am not a doctor, but a sufferer just like you. Thus, I state again, this information is intended to educate and not diagnose! Do NOT stop taking your antidepressants or other medications without first seeing your doctor!

IGuard is a great website in which you input all your medications and supplements, and receive a report regarding potentially dangerous drug interactions. I learned about Serotonin Syndrome through this site as a potentially dangerous interaction between my anti-depressant and Percocet.

Keep aware - keep safe.

(((Gentle Hugs!!)))

Jessica

An accurate account

My son, who has a blog at http://braceforepic.com/, posted the following regarding my fight with the gov'ment to get my Medicaid for the month of August. Be warned, he does use vulgar language! He's 21, so what can ya do??

He says:

The Social Security Administration (SSA) has a pretty wicked sense of humor it seems, but we’ll get back to that, it’s story time.

My mother (whose own blog can be found at http://fmslife.blogspot.com/ ) is a sufferer of many painful conditions; fibromyalgia, scoliosis, and spondylolisthesis up until she had her lumbar spine fused because of it; and is what people (read: doctors) call a “chronic pain sufferer”. It’s been 6 months since she’s been able to work and life is rather hard on both of us, I stay at home and take care of her, and she does all she can to get the help she so desperately needs while keeping us afloat on a myriad of government checks being thrown our way.

Her being jobless means a lack of health benefits for her, which in turn means that the medication she needs just to function is now rather expensive, costing roughly 2 cows, a chicken, and the rights to my own first born child… err, more like $80-120 per monthly prescription (note: it's actually $80 to $120 per prescription/per month - about $300 to $400 a month total), and seeing as we don’t have much of an income, that’s alot. So her recent endeavor has been to find some sort of government program to help her get her medication and easy inexpensive access to her primary care physician. Much to our delight, she was recently approved for medicaid.. for the month, until she goes on Social Security Income (SSI) next month. Medicaid meant that she would be able to get her quickly diminishing medicine supply replenished for nothing out of her pockets, or so we thought.

Upon being approved, she called around incessantly in order to get the information she needed; primarily her medicaid number; in a much quicker fashion than is usually expected, with only a month of medicaid available to us, we had little time to waste. With only a couple of hours spent on the phone, numerous transfered calls, and quite a bit of frustration on her part, we finally got a straight answer out of them: Head to the local Department of Health and Human Services (DHHS) office and your medicaid letter will be available to pick up. So I go up there myself to pick up the letter, only to be told that no, my mother does not have medicaid. Startled and a little angry having stood in line for an hour and a half for this bullshit, I call my mother and explain to her what the woman at the counter said. I go home, and my mother procedes to spend the next 2 hours on the phone calling around and looking for more supposed “straight answers” about as to where the fuck her medicaid was, because she has a prescription that is in dire need of filling, and we lack the funds to do so.

Again, an answer was received: head to the local SSA office and get an emergency medicaid certification. We went, reluctantly, and was greeted to a much faster reception, but yet again a depressing answer. They told us “Your medicaid was canceled because you’re going on SSI next month.” to which we replied “Well what the fuck about this month?” and it went on and on, until they realized the folly of their ways. Their sick twisted sense of humor comes into play when they told us “Well, it takes about 30-60 days for your medicaid information to be mailed to you.” Hold the fucking phone, what the shit did he just say?

Let’s recap:

1) We were approved for Medicaid for this month and ONLY this month, the month of August, in the year two-thousand and fucking nine.
2) We have to wait 30-60 days for our information to come in, so we can use the medicaid

Still not following?

We would have to wait until, at the latest and god forbid, the month of Oc-fucking-tober in order to get the information we need for her medicaid in order to be able to pay for the medication she needs now, in August. Perfectly logical? Fuck no. Does it not dawn on a person when we explain that we “were only approved for this month” that waiting 30-60 days for the information needed to come to us is un-fucking-acceptable?
After receiving a mental ass-kicking, the teller and his co-workers who were standing over the shoulder, dumbfounded and too stupid to realize the problem my mother and I faced, we finally got them to agree to set in motion the actions that would get us the emergency medicaid certification on Monday.

Back to me:
It's now 2:00 Mountain Time on said Monday and nothing has been done. Again, I've spent too much time on the phone trying to get someone at SSA to give me information on whether or not the emergency certification process has been started. I've left messages for two agents, as well as two supervisors. So far, nothing. I've called Austin, nothing. I've called the local DHHS, nothing. Nothing, nothing, nothing. The process is: SSA faxes Austin an "ok for Medicaid- please rush" letter, then Austin faxes the local DHHS the emergency certification letter, then DHHS lets me know to pick it up, then I pick it up and all is well for the next 20 days. Austin offices close in an hour. If this isn't done today, I can't get my medication today. If not tomorrow, same thing. And it goes on and on and on and on...until the month is over.

Dream interrupted

So I had this dream. Not a sleepytime dream where I'm chased by mannequins, but a dream for my life. A dream for my future.

I was going to finish my Master of Arts in Education; I was going to change people's lives by helping them with their education.

But I'm the one who needs the help!

I am two and a half classes away from finishing my Masters, but I have lost the motivation to continue. The thing is I still want to finish. I really, truly want to earn that degree! I just can't seem to find the will to pull myself up and finish it.

Sometimes I wonder if I'm just fooling myself into thinking I can finish it. Every day I think I couldn't feel any worse, and the following day proves me wrong. 

Maybe it's that so many things have gone wrong that I live in constant anxiety of the next anvil to drop on me. Maybe my subconscious is telling me if I drop out of school now, it will be something I chose to do and not just something else screwed up that happened to me because of my own bad luck. Maybe I just don't want to have to worry about having to write research papers, action research projects, team projects, etc. Maybe I have too much to worry about right now that school has to be put way for now and revisited sometime in the future. Maybe I'm just talking myself into dropping out.

But it's not something I want to do. I'm wondering if, at this point in my life, it's something I really do have control over.  It's not like I have control of anything else that has happened to me!

I know what you're thinking, Mom! We have control over how we react to things. We have control over what we do. But I think this deep, dark depression I've fallen into because of the constant, unrelenting pain has taken my control away from me. I don't want to live like my grandmother did (she also had FMS, among other conditions). Every year she would tell the family she wouldn't make it 'til Christmas. She lived her life waiting to die. As much as I don't want to fall into that line of thinking, I now know exactly where she was coming from. The chronic pain and depression can eat into your very core, your very being, like thermite. Your hopes, dreams, intentions, and control over your own life quickly melts away like snow in the desert sun.

Yep, I like those analogies. However, I truly hate that they can even remotely apply to me. Me, the once-type A personality; the straight-A, self-entitled "professional college student" with nearly 200 college credit hours under her belt; the one who was debating on which degree to pursue for a second Masters degree. Can that be me again? I would like it to be. She was a force to be reckoned with, and she was fun (and incredibly funny - just ask anyone!). I wonder where she went?

Will this new me allow me to fulfill my dreams? Maybe if I ask nicely...

Gentle hugs to all,

Jessica

A Fantasy

I have this weird fantasy.  I have normal ones, too: have my favorite Dallas Stars player (Marty Turco) fall in love with me and we run off and get married, and I get great massages from the team therapist; being incredibly successful and have everybody listen to me; attend game 7 of the Stanley Cup finals where the Dallas Stars win the cup.  Well, these are normal for me anyway.

I developed a new one very recently.  Since I went on medical leave from work in February, I have become obsessed with the TV series House.  My weird fantasy is to be treated by Dr. House, or someone closely resembling his attititude, acute observations, and absolute genius.

Why?  Because I'm sick!  And I'm sick of being sick, tired of being tired...and I want someone to find out why I am this way and fix it.  Even if he repeatedly calls me an idiot and liar.

I want someone to tell me it's not Fibromyalgia and it's not just my screwed up spine that is causing debilitating pain; constant and chronic fatigue; severe depression; headaches that are so bad that it hurts to rest my head against the pillow; muscle spasms in my neck, shoulders, upper arms, upper back, middle back, lower back, hips, buttocks, thighs, and calves...and feet; nerve pain so severe that I can trace exactly where the nerve runs through my body; etc.

Not that I don't believe in Fibromyalgia, I just want to know the underlying cause and have that treated so the rest of it goes away.

I have mentioned in a previous blog that I have ruled out a lot of other disorders and diseases.  I'm sure my doctor hates the fact that I have Internet and tend to research my symptoms to find out if my pain, and everything else, could be caused by something else.

My memory is not what it used to be, but I know we have ruled out hypothyroidism, hyperthyroidism, renal fatigue, renal failure, hormones, diabetes, food allgery, and rheumatoid conditions (arthritis, rheumatoid arthritis, etc) through blood tests.  There were others, I'm sure.  But without my medical records in front of me, I cannot remember what they were.

With Dr. House, I would be tested for every known cause of chronic pain.  I just watched an episode in which a patient was admitted for severe leg pain and it turned out she had congestive heart failure (a disease which killed my father in September 2007).  Of course, she was also bulimic and relied heavily on ipicac, causing heart damage.

If I felt well enough, I would write the entire episode right here for your reading pleasure.  However, I didn't sleep much last night and my entire body has been in horrible pain since I decided to get out of bed because good, restful sleep wasn't in the stars for me.  It never is, but the past few days have been the worst.

But anybody who has ever seen the show knows the storyline: patient is admitted, House and team run new differentials for each new presenting or discovered symptom, patient in treated for many different diseases or disorders until he or she almost dies, then House's acute observation and amazing insight discovers the last piece of the puzzle and the patient is cured forever.

Yeah, I want that.  I want to be cured forever.

Is that too much to ask?

Gentle hugs and stay tuned,

Jessica