Part D Plan Appeals

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If you have ever received a denial letter from your Medicare Part D plan for coverage of a medication you have been on for a good while, please know that you have options. You do not have to be held at the mercy of the Part D plan drug company if you cannot take an alternative medication on their formulary. This is my story…

During the last two months I have been dealing with the appeal process to get approval for my long-acting pain medication which my Medicare Part D Plan dropped from the formulary in January 2016. I used this plan last year and it covered all my medications except one. Considering the number of drugs I take I felt this coverage was very good. Because I was pleased with the coverage, I did not seek another Part D plan during the window Medicare patients can switch plans during Nov/Dec 2015 window. I was not notified by the Part D plan that they had dropped me from the premium plan to a savings plan which is why several of my once covered drugs were no longer covered. They stated they sent all their clients a letter but I did not get one… my word against theirs. Had I known they were making changes I did not authorize I would have compared plans during the open window when Medicare patients can change Part D plans. I did call Medicare to complain about the change of plan without my authorization and was told by the Medicare official that the Part D plan insurance company can change your plan at anytime in the year without your authorization, but they must notify you by letter.  This is a rather unfair practice in my opinion. If a drug company changes your plan in the year, you should then have an equal opportunity to seek a competitive plan!

I have been using the Butrans Transdermal pain patch for several years now for round the clock pain relief. It is in a classification of drugs that do not require a 30 day written prescription and can still be e-faxed to the pharmacy. This patch is worn 7 days at a time. When I received the letter from the Part D plan insurance company that they filled a one time 30 day supply of the patch but denied further refills because the drug was dropped off the formulary, my heart sank. You see, this drug made a huge difference in my life. My pain had become so severe that I was unable to sleep more than 2 hours a night and I was in bed an average of 3 days a week due to severe pain. Once my pain levels were brought under control through the use of this pain patch I got my life back! I no longer wake up unable to move because joints are locked. Although, I still have pain it is a tolerable 3-4 range most mornings on waking vs. 9-10 range it once was on the 0-10 pain scale. That is a vast improvement! Losing this patch I’ve been on for the last 3 years would have been devastating to me.

I started the appeal process fairly confident that my Part D plan insurance company would come to see reason and allow me to stay on this drug and cover it. I was surprised when the denial letter came in the mail with recommendations for medications covered on their formulary to which I am allergic or were unreasonable because the strength was too much (ten times the strength of morphine). I called the company and asked why I had been denied. I was told that I needed to contact my doctors office and let them deal with the appeal. This began a two month process in which multiple appeals were denied. My physician’s office had filed 5 first level appeals and they were all denied! I had called the insurance company 5-6 times myself only to be transferred to the incorrect party multiple times, to be given a case number that was non-existent when you called back to follow up, or to find that your appeal was denied because the physician’s office wasn’t open on a Sunday afternoon to meet the filing deadline on paperwork sent to them after hours the Friday before!

I was able to get an emergency refill of the Butrans patch after much haggling with the Part D plan representatives and then my appeal was denied again. When I called to ask the next step, I was told I needed to file a secondary level appeal but I was not told how to file this appeal. When I  asked how to file a secondary appeal I was given the run around time and time again. The insurance nurse representative at my doctors office was ready to rip her hair our because she had complied in filing every form they sent her. This nurse at my doctors office told me she had never dealt with a company that had denied appeals over and over when it was obvious the formulary choices they recommended were not appropriate. Finally I found through reading all the literature I’d been sent from Medicare, that a secondary level appeal is a independent appeal from a appeal company that works for Medicare, not the Part D plan insurance drug company! The Part D plan representatives could have given me this information but they chose to withhold it because they did not want to pay for this pain medication outside their approved formulary. After a one week period of reviewing my secondary appeal which just consisted of a letter containing my name, medicare number, and the reason for the appeal, this independent agency agreed the Butrans patch should be dispensed and the Part D plan must comply in allowing the medication to be dispensed through their plan!

So, you see, we have rights but you need to be informed. Read your Medicare handbook and don’t be afraid to call Medicare and ask questions. Do be wary when dealing with the Part D drug plan because they may not have your best interest at heart as they are a for-profit business. I can’t imagine what would have happened if I’d thrown up my hands and given up. I don’t want to think about those dark days of sleepless nights and pain so off the charts I wanted to die. We have rights.

 

 

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Rheumatoid Disease Awareness Day

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February 2nd is Rheumatoid Disease Awareness Day. The RPF: Rheumatoid Patient Foundation, supports this day of awareness for patients, the public, and healthcare providers. This organization was founded by patients for patients.

ccf1445a6effb0de4e0ac174beb14c4bYou can read about the foundation at this link: http://rheum4us.org/about/ and also check out their educational materials. This site provides a lot of good, sound information for the newly diagnosed and shares progress being made in treatment for those who have been living with the disease for a while. You may choose to join the Foundation, but it is not necessary to access their educational materials. I would encourage you to bookmark their internet page for your own reference.

How do you feel about bringing awareness to Rheumatoid Arthritis? I will confess over time, my thoughts have changed about the matter. I went through my stage of research: having to read everything about the disease to educate myself. Then I went through the woe is me stage as I struggled to cope. I became angry because no one knew what the disease was about and did not believe my level of suffering. The public compared my hellish suffering to osteoarthritis. I thought if one more person compares a disease that has leveled my life to rubble to their pinky “killing” them I might just be fitted for a orange jumpsuit with a life sentence. Funny though, living with rheumatoid disease is a life sentence in it’s own right minus the orange jumpsuit. One is imprisoned by their own body. The jailer is the immune system gone haywire. The disease took me down kicking and screaming. One day … over time … and with God’s help I realized I had to let it go. I felt like I was at the end of my coping. I was growing bitter. It wasn’t serving any purpose to focus on the injustice of it all except to keep me ripe for a flare.

Today I can look at awareness for rheumatoid arthritis as just that: awareness. You may in the lifetime you have this disease bring some people to a level of awareness but no one will ever fully get what your situation is like except for another patient with the same disorder. Even then, you may share the same disease, but your symptomology won’t be exactly the same. You will have a shared understanding of what it means to suffer… as they say “misery loves company”.  Still no one knows what it is like for you except for you and your maker.  Finally I realized there are two groups of rheumatoid disease patients: those surviving it with hope or those surviving it with despair. I made the choice to survive in hope.

The awareness I would like to leave with you as this day of rheumatoid disease awareness approaches is that you never have to be alone in despair with this disease again. When no one else understands, Christ does. When your doctor can’t help you, Christ can. When you don’t think you can take another step forward, Christ will carry you. He is there waiting for you to accept Him. No medication, physician, spouse, family can ever provide what He gives freely: salvation.  It is only through my personal relationship with Christ that I am surviving chronic pain and illness with hope. I know this world is not my home. I have hope for an eternal future in heaven with Christ where there will be no more tears, no more pain, no more suffering. I refuse to live my life defeated. Instead I am victorious in Christ because this disease won’t hold me in a grave.  If you don’t know Christ  then I ask you to reach out to Him. My healing may not happen in this world, but it will happen in Heaven and that is my awareness as I enter my 7th year of enlightenment. John 3:16.

Meds Take Role In Faking Wellness

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As I filled up two extra large medication planners this morning, one for morning and one for night to hold the 20 routine medications I take daily, I was cranky. I don’t like taking them. Some are expensive. Many of them stick in my throat due dryness associated with Sjogren’s Syndrome. Some of them hurt my stomach. Some of them make me feel dizzy and nauseated. Sometimes they don’t work!  I think to myself, “I’m not going to take them anymore!” Then the nurse rises up in me and says, “You will take your medication as ordered. You know better!” and the patient side of me who wants to throw the pills in the trash and run caves in to my more sensible nurse side.

Have you ever felt like stopping medication as a chronically ill person dependent upon your own personal pharmacy? I think you probably have. It’s normal. We don’t want to admit we have to rely on our medication regimens to get barely get by in life. Yet, throw a rebel fit and stop taking them for a day or two and suffer the consequences ten fold, right? Those 20 routine pills control a whole slew of chronic illnesses. Without these meds I quickly regress into a sloth that moans in pain without being poked, unable to get of bed.

I told a lady at church yesterday that I am a master at faking being well. I felt comfortable confiding that because she spoke the same language because she is finally coming into a autoimmune diagnosis of her own. The look in her eyes echoed mine. As I thought about that statement, it rang with resounding truth. How many of us are masters at faking being well? I suspect a large number of us are excellent actors!

I think we can attribute our academy award winning performances to our medication regimens. My medication does not control my symptoms as well as I would like, but for a few hours in the day I can fake being well to fit in socially. People like us, with autoimmune disease, understand the unwritten motto of the disease: You play, you pay (spoon theory).  The cost of faking being well is time spent resting. Going to morning and evening church services on Sunday wipes me out. I will spend all day Monday loafing between the bed and recliner too fatigued to do anything else. Throw a flare in there because I tipped the balance of play/pay (used too many spoons) and it’s ground zero. Can you relate?

In addition to the routine meds are the weekly and bi-weekly injections to slow the progression of rheumatoid arthritis, insulin injections, pain meds, muscle relaxers, ointments, balms, creams, gels, along with heating pads, hot packs, and cold packs. My bedside table and chairside tables are littered with prescriptions of all sorts. I have enough arthritic topicals to treat nursing home population twice! Try to take them away and I’ll tear your arm off! These medications promote my acting ability.

My name is Mischelle, and I am a faker at being well. Are you too?

 

 

 

More Than A Sinus Infection

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Fall is always the worse time for my seasonal allergies. I snuffle, sneeze, wipe watery eyes, and tilt my head to clear my ears. Maybe you do too? I’d been snuffling for a month to clear the post-nasal drip and ended up with sinusitis, aka a “sinus infection”, but it was no ordinary sinus infection because of underlying disease.

Because I have multiple autoimmune diseases, I take both Methotrexate and Actemra injections to slow the progression of the disease. I am also a diabetic. Diabetes is a disease that often masks infection.  During the time of having the snuffles, I continued to take the aforementioned drugs which lowered my immunity considerably. By the time I realized my seasonal allergies had become a full blown sinus infection, it was too late.

I say that it wasn’t an ordinary sinus infection because I am not well. Most healthy adults can manage a sinus infection with minimal impact to their lives. In my case, the month of snuffling had caused congestion in the sinuses when coupled with the decreased immunity, turned into a infection. Not to be overly graphic, but the affected sinus cavities were packed with congealed mucus that contained pus and was too thick to drain effectively.  Sinus infections are not contagious. They often occur as a result of prolonged seasonal allergies. Sinus infections can either be bacterial or fungal. The bacterial type is the most prevalent among suffers of this illness which is why doctors typically prescribe antibiotics; however, if you are immunocompromised and have completed a round of antibiotics and still are symptomatic, you should consider that you have the fungal type of infection. If you have had multiple sinus infections, more than 3 in a season, then you have developed a “chronic” sinus infection which more than likely is fungal in nature.

It is very important to have a good relationship with your primary care physician (PCP). A PCP educated about autoimmune diseases like Rheumatoid Arthritis, will understand that a sinus infection in a immunocompromised patient needs prompt, aggressive action. Should that infection be prolonged, beyond the initial course of antibiotics the doctor should suspect that the infection could be fungal verses bacterial, requiring a different type of medication.

Do not leave your rheumatologist out of the communication loop. All drugs that impact immunity will need to be halted during treatment of an infection. Your rheumatologist or the physician prescribing your disease modifying drugs will give you a schedule to stop and resume your medications. Your rheumatologist can also work with your PCP to treat the infection.

In my case, my PCP recognized that I needed a strong antibiotic and decongestant to treat the sinus infection. I was given a course of Augmentin twice daily for 10 days and a liquid decongestant to promote drainage. All disease modifying drugs were stopped for the autoimmune diseases. My blood sugar readings soared out of range of the glucometer while my body tried to fend off this infection requiring  insulin injections in addition to the oral diabetic medications I take.  I had a fever of 102, hard chills, a sore throat, and difficulty breathing lying down ….. and then I flared. The infection triggered a monster flare that put in bed for three days. This domino effect of one illness causing other illnesses to skew is commonly the case with people with autoimmune diseases.

It’s not “just a sinus infection” that can quickly be recovered from while you continue with work, parenting, or daily activities when you have compromised immunity. Friends, family, and co-workers may not fully comprehend why you are so sick with because a sinus infection may be a routine illness to them that is a inconvenience for a few days. This can be hurtful. Be prepared not to have the severity of your symptoms acknowledged or understood by others.

It is exhausting to have to explain and re-explain your chronic autoimmune illness, but if you live alone, as I do, you need to make it a priority to have contact with at least one person who understands your illnesses or that you can educate about the severity of the situation so that someone is looking in on you when you do experience an acute infection. Any infection in an immunocompromised patient can quickly advance into something more serious requiring emergency medical treatment.

Skeptical? Sinus infections can advance to meningitis, infection of the bony structures of the sinuses requiring surgical intervention, and can even result in death. Consider this from medicinenet.com: “While serious complications do not occur frequently, it is possible for sinus infection to cause a direct extension of infection into the brain through a sinus wall, creating a life-threatening emergency (for example, meningitis or brain abscess). In addition, other adjacent structures can become infected and develop problems, such as osteomyelitis of bones in the skull and infection around the eye (orbital cellulitis). Rarely, these infections (mainly bacterial and fungal organisms) may cause death. The most susceptible individuals to complications are patients with suppressed immune systems, diabetes, and relatively rarely from multiple trauma injuries that may occur in natural disasters.”

The very nature of the disease modifying drugs we take can lower our immunity to the degree that a sinus infection can be a serious illness. Don’t ignore your symptoms. Seek early treatment.

 

 

Does Social Media Promote Loneliness in the Chronically Ill?

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Loneliness is a very real problem among people these days, but more so with the chronically ill. Any kind of long term illness is isolating, but the world we live in today promotes loneliness. You might ask, “how can that be?” with the explosion of growth in social media. Although these types of media help make the chronically ill feel more connected to others, it actually can serve to isolate one from face-to-face meaningful communication which builds relationships. I think this is quite evident among younger generations who would rather text than speak to one another.

An article from The Huffington Post, titled “Seduced By Social Media: Is FaceBook Making You Lonely?” states: “The problem is multi-fold. The time we spend socializing online not only discourages face-to-face communication, but it also undermines our confidence at engaging in real conversations with real people about the real problems and issues that thread through our lives. Indeed, social networking provides a means of escape, an easy out on having to confront those parts of our lives we wish were different; more glamorous, and less mundane.” (http://www.huffingtonpost.com/margiewarrell/social-media-lonely_b_4034744.html) Although, I agree with that statement, I also know that without social media I would personally feel more of a disconnect with friends, family, and acquaintances. I live alone with a dog. My days can be pretty mundane and filled with pain with few distractions. More often than not, I welcome the distraction of FaceBook which is my favorite social media.

On the flip side, I do agree that if I were not an active user of social media and the internet, that it would force me into more face-to-face interaction or I’d spiral into despair! There are days that go by that I don’t see a soul, but I speak to friends and family daily over the phone. Yes, I still have a land-line … shocker! Chronically ill people need land lines to call for emergency medical service consistently and reliably. There was an informal poll taken in my Sunday School class regarding how many of us still hand land lines. I was one of three who confessed! I took notice of the reasons given why these women prefer text to talk and it comes down to being busy Mom’s with the unspoken hint of not wanting to run into the yuck of other people’s lives. Not because they don’t want to help others, but because they are so bogged down in their own lives they are hanging on by their fingernails trying to manage their own families! Texts are quick and efficient, communicating the bare minimum of information. Talk can be long, drawn out without communicating anything of importance but allows one to pick up on inflection of words, emotion, and other non-verbal communication types.

I truly try to monitor my FB communication and not post any Debbie Downer, woe-is-me stuff. This view does tend to support the Huffington Post’s article in that we don’t communicate honestly on social media about our real lives. Guilty here, but only by omission. Do I want to spill my guts on FB? I think not. I try to run everything I post on FB through the “What Would Jesus Post” filter because I want to use social media as a platform to witness to others. Rather than post anything too personal like the horrific pain I’m having, I would rather post a bible verse that is meaningful to me that day, something educational about health, or pictures of my dog that make me smile! I can’t even say I am posting it for other people. I mostly post for myself and if it touches someone else then I am blessed.

Please understand, if you need to vent about your disease, pain, family dynamics and illness on your social media page and it works for you, I’m not condemning you. I am sharing that it’s not for me any longer. When I did engage in that type of posting early in my disease it didn’t miraculously open anyone’s eyes to my suffering, but did leave me feeling like absolutely no one cared! My posts weren’t “liked”, commented on, or effective in any positive manner for ME. I happen to have encountered illness groups on social media where people benefited greatly from sharing about their disease but these were in private venues on social media where participants had similar symptomology not the mainstream, shared newsfeeds.

So, I’m left debating each sides of the argument here. Regardless of how you view social media and how it can be a way to escape loneliness or promote loneliness, I can say with certainty that you are never alone. As a Christian woman, I have learned that God is always there even when it may not “feel” like it. God isn’t up above somewhere out of reach. He is with His children as close as the air we breathe! His Word says, “I will never leave you nor forsake you” – Hebrews 13:5(b). In Sunday School today we learned that in the Greek, it translates, ” I will not, I will not, I will not let you down, leave you in the lurch, leave you destitute, leave you in straits and helpless, or abandon you.” (Stronger by Angela Thomas, p. 39-41). In this same study we looked at the apostle Paul and how he too was lonely during the time he was imprisoned, afflicted, awaiting execution by reading 2 Timothy 4:9-22. Paul chose to treat his loneliness by: asking for visits from godly and trusted friends, he asked for physical comfort from the cold, he asked for his books and parchments to keep his mind occupied, he forgave those who abandoned him, he reaffirmed his strength came from the never-forsaking presence of God, he kept his hope secure in Jesus Christ, he kept his worship focused on the glory of God, and he turned his thoughts away from himself and onto the welfare of his friends. (Stronger by Angela Thomas pg. 41).

What healthy actions might you take today to ease loneliness? I find that when I get out of myself and push my pain aside that I am most successful in combating loneliness by reaching out to someone else who is afflicted with a similar circumstance. God gave me a mission to, “feed his sheep” and I try to accomplish that by blogging about things I learn along the way (like this very blog you are reading), by calling members of my church congregation who are isolated or hurting, by calling a friend and asking them about themselves, by doing something nice for someone else even when I don’t feel like it, or engaging in bible study with friends. We can all do for others even if it is just buying a coffee for a stranger, putting a card in the mail, or just lending a ear without trumping woes with woes.

The debate will go on and on about social media and it’s detriment or contribution to society, but I do urge you that if you feel lonely in a household of people or as a 48 year old Dog Mom with lots of “yuck” in your life to reach out personally to someone. If no one else understands, find another member the autoimmune disease community with whom you can have honest communication. God made us for relationships. Specifically He made us for a relationship with Him! Rest assured you can tell God, your creator, anything. He can even handle your anger! Share with him the good, bad and ugly and soon you will experience his peace in your life amidst your problems. Pour your heart out to Him. He will never abandon or forsake His children. Learn of His promises by reading a good easy-to-understand version of the Bible. There are some great online Bibles now. God speaks to me through His Word.

How do you have a relationship with God? It’s as simple as A-B-C: A- admit you have sinned and ask for forgiveness, B – believe that God sent his only Son, Jesus Christ, to die for your sin so that you may have eternal life, C- confess with your mouth that Jesus Christ is your Lord and Savior.

When Mind Over Matter Isn’t Enough

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Do the phrases, “suck it up buttercup” or “you can do anything if you put your mind to it” sound familiar? Maybe these are things you say to yourself when you are struggling with your mobility, pain, and symptoms on any given day? Feelings of personal or perceived failure in letting yourself or others down often accompany these phases.

The things we tell ourselves when we are chronically ill have the power to hurt as surely as the insensitive phrases uttered by loved ones. In a recent Bible study*, I learned about how destructive the words we play over and over in our head because when we tie those phrases with strong emotion, physical pain, and mental anguish it creates a “memory trace” in our cerebral cortex which means every time we experience that situation again, our minds immediately go to that phasing and those feelings which reinforces it again causing it to become a belief.

God wired our brains. We do have the power through Him to change those destructive thought patterns. Scripture says, “Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is – his good, pleasing, perfect will” (Romans 12:2). God also gave us the ability to accept or refuse thoughts. We can always call on God for his perspective in any given situation when we are unsure about our circumstances.

There was a time early in my disease process where I could power through my symptomology at a price of being confined to home for a day or two afterward. No longer. Disease has disabled me to the point I’m not able to function in a normal manner physically or mentally for any length of time without chest pressure caused by cardiac disease secondary to rheumatoid arthritis. When I hit my invisible disease wall, I must rest and take care of myself regardless of what I think or what anyone else thinks. It’s not easy. I still mess up and test the boundaries which sends me to my bed; however, I no longer beat myself up and put those memory traces into beliefs that are influenced by the enemy.

God has a purpose to work everything in my life to His glory and I don’t have to understand the reasons why. I replace defeating thoughts with scripture. For example, instead believing “you can’t do anything,” I replace it with scripture that says “With Christ, all things are possible” (Matthew 19:26) or “I can do all things through Christ who strengthens me.” (Philippians 4:13) With that said, those things that are possible with Christ are in His will, not mine. God isn’t a Jeanie in a bottle. God may not intend for me to keep a shopping date with a friend or to be able to go away for a weekend out of state but involving Him in the process keeps me from becoming discouraged and bogged down in thinking influenced by the enemy. Having God in my life gives me peace when I am dealing with struggles.

Do not let the enemy make you feel like your life is over because you are sick. That is a lie that will be perpetuated in your life to disable you spiritually! Instead, take time to write down Bible verses that pertain to your particular season in life. Read them frequently so when you feel particularly vulnerable, you can replace lies with God’s truth.

If you are hurting spiritually, please reach out to God. He made you. He knows everything about you. I would encourage you to pick up a easy to read version of the Bible and start reading about Jesus in the book of John. Will putting Christ in your life make you well? Not likely, but it will bring you peace as you go through this life.

Father, I pray that you will reach out to the one reading this blog and let them feel your presence. Please ease their physical, emotional, and mental suffering as they deal with being chronically ill. Heal their broken body if it is your will, for your glory. Please give them your peace, that your Word promises surpasses all understanding. Please give them a desire to know you. Amen.

*Unglued by Lysa Terkeurst

 

AI Disease: Blessing or Curse?

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I think a lot of people when newly diagnosed with a life-long, incurable illness feel like the bottom just fell out of their world. I know I did when I was diagnosed with diabetes at age 32. Little did I know it was a precursor, a training ground, a boot camp if you will for what was to come 10 years later when I was diagnosed with a whole slew of autoimmune diseases.

Those of us with autoimmune disorders and chronic pain feel like we have been imprisoned by our health. We ask Why? We beat our self against the bars of our prison. Some of us become angry then bitter. Some of us fall into depression so deep it scares us. Some of us are in denial. Then there those of us who come to the conclusion that this disease is our battle ground where we are being tested and honed into the people that God wants us to be.

The Bible tells us what evil intended to decimate us, God intends for good. As pointed out by Max Lucado, in his book “You’ll Get Through This”, “(Satan’s) strategies always backfire. The imprisoned Paul wrote the epistles. The banished John saw heaven. The cemetery of Lazarus become a stage upon which Christ performed one of his greatest miracles.”  What good has come out of your struggle? Can you see it?

Christians are tested every day. God uses what Satan intended for evil, as testing. These tests help “refine us like silver” according to Psalms 66: 10-12. “Everyday God tests us through people, pain, or problems” (Max Lucado).

“For when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be strong in character and ready for anything.” James 1: 3-4. NTL

There isn’t one verse that I know of in the Bible where Christians are guaranteed a easy life. In fact, if you are a Christian, you already know that living for God is anything but easy in a world where Christians are now a minority. At the same time, you know if you are a Christian, that you have peace in the struggle. While in your mess, don’t think for one minute God has forgotten you. In fact, when you find yourself going through difficult times, ask God what you need to learn through your difficulties.

In my personal testing, I could see I was being stripped of my pride and my love in spending money.  As a former charge nurse over a chemotherapy and renal dialysis unit, I was striped of position, title, and rank when I had to leave that job for a desk job in a less than prestigious position than paid less than what I desired. When I filed for disability, I experienced the prejudice others imposed on me and I felt belittled and even shameful for not working. Rather than tell people I was disabled, my pride said, “I’m retired”. I went from being middle-class to being poor. I got striped of my dreams of having a child of my own via invetro fertilization. An emergency total hysterectomy left me barren. My plans were not God’s plans. God had to strip me of all these external things and the life plan I had in my head in order to hone me into the person he wants me to be. He had to slow me down, pull me out of the rat race, and get my attention, so I could do his work. Now I am flat broke, living alone on a social security income with medical costs that outweigh my monthly income, but I am closer to God than I have ever been in my life. Old dreams have been replaced with new dreams. My priorities have shifted. I have reclaimed my joyful spirit in the midst of the struggle.

These realizations didn’t come to me easy or quickly because I’m stubborn. The first two years I ranted and raved like a toddler throwing a temper tantrum. I went to counseling for six sessions because I felt like I was going crazy then quit because I thought the counselor was crazy! I raged because of the physical pain and the imposed pain of my life imploding. I screamed at God. I was mad then I became bitter. I told myself that if God was going to let this happen to me then I would stop talking to him and I did! He didn’t stop talking to me. He didn’t abandon me. He didn’t mock me. He stood by my side. He was there when I decided I was finished rebelling. He picked me up when the answer for my healing was, “No”, “…he said my grace is sufficient for you for my strength is made perfect in weakness.” (2 Corinthians 13:9).

I am 48 years old now, 6 years into diagnosis of sero-negative rheumatoid arthritis and it’s ugly autoimmune step-sisters. Rather than see my illnesses and pain as a curse, I can now see the blessings. Rather than being stuck in myself, I can see that I am meant to reach out to others who are hurting. “God comes alongside us when we go through hard times, and before you know it, he brings us alongside someone else who is going through hard times so that we can be there for that person just as God was there for us.” (2 Corinthians 1:4 MSG) Who can you help today? Who can benefit from the lessons you learned while walking through the crisis of chronic pain and illness?

As Max Lucado says, “your mess can become your message”. He points out these scriptures:

  • He takes no pleasure in making life hard, in throwing roadblocks in the way. (Lamentations 3:33 MSG)
  • God began doing a good work in you, and I am sure he will continue it until it is finished when Jesus Christ comes again. (Philippians 1:6 NCV)
  • He will work in us what is pleasing to him. (Hebrews 13:21 NIV)
  • This trouble you’re in isn’t punishment; it’s training, the normal experience of children …God is doing what is best for us, training us to live God’s holy best.” (Hebrews 12:8,10 MSG)

Whatever your struggle may be today, know that God is there waiting for you to accept him. Only he can give you peace that surpasses all understanding (Philippians 4:7). You are not alone. Jesus said, “I am with you always, even to the end of the age” (Matthew 28:20b).

 

Reference: You’ll Get Through This by Max Lucado. pg 45-55. 2013 Edition.

 

 

Faith During Illness

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My faith in God sustains me through many trials including living with incurable illness and pain. I don’t know how I would have made it through some of the darkest days of my life without God. Having faith in God gives me the hope I needed to push through the pain, disability, and socioeconomic aspects of being sick.

My best friend and I shared Romans 8:18 on t-shirts we had made for each other to bring awareness to Rheumatoid Arthritis, which says Yet what we suffer now is nothing compared to the glory He will reveal to us later. (NLT) The hope I cling to in this verse is that one day I will have freedom from this disease, if not in this life, then eternity. I didn’t always understand this. When I was first diagnosed with autoimmune diseases I was angry with God, but you know what? He can handle our anger. I cried out to Him for understanding, healing, and I had to ask Him to forgive me for being bitter about my plight. I had to hold on to my faith and hope that things would be better.

There were days when I felt my faith was tested. I felt that disease was trying to rip me away from God because I felt I had lost so much but it was then that He revealed to me these words from the Apostle, Paul: And I am convinced that nothing can ever separate us from God’s love. Neither death nor life, neither angels nor demons, neither our fears for today nor our worries about tomorrow – not even the powers of hell can separate us from God’s love. No power in the sky above or in the earth below – indeed, nothing in all creation will ever be able to separate us from the love of God that is revealed in Christ Jesus our Lord. (Romans 8:38-39 NTL).

Do you have that same hope? When I have walked the floor crying, lain in bed groaning and begging for God to let me die in my sleep so I don’t hurt anymore, or faced yet another daunting diagnosis I know I do not have to despair because my faith tells me this is not permanent. One day, He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain. (Rev 21:4 NLT).

I see others who share my illnesses wail and live their lives as if there is no hope through their postings in support rooms on FaceBook and it breaks my heart. There is HOPE! When family, friends, and people in general let you down because they don’t understand …. Jesus understands. He is ever present and He loves us beyond our comprehension. For God loved the world so much that he gave is one and only Son, so that everyone who believes in him with not perish but have eternal life. (John 3:16 NLT)

A lot of people ask, “how can a compassionate God allow so much pain and suffering especially in those who love Him?” and the answer is not easy.  God didn’t create man to be robots. He created us with our own feelings and a will. He wants us to choose to love and follow him not to be made to do so. Because of sin in the world bad things happen, but God always works it to good. And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them. (Romans 8:28 NLT)  It took me a long time to realize this. I was even mad at God for a while, but that is okay because he still loved me and helped me work through it. How has God worked my pain and suffering to good? The pain and suffering slowed me down, grabbed my attention, and made me see how much I needed God. My grace is sufficient for your for my strength is made perfect in weakness.” (2 Corinthians 12:8b NLT) God  uses my illness to work in the lives of others. I am growing in his love.

I am reminded of Christian author, Janet Oke, who penned an analogy about one of her characters growing petunias in her yard. She explained that putting a box around the flowers to shield them from the wind, bugs, and anything that may harm them would keep them from growing and blooming. In the same way, God does not shield us from certain things in life so that we can grow. I believe that my illness is a way for me to grow and bloom into the person he intended.

My prayer for you is that if you don’t know about faith and the hope that I’m writing about that you will reach out by picking up a Bible and start reading. No doctor, medication, friend, or family member has helped me more than God in getting through the rigors of daily living with chronic illness and pain. I pray that God, the source of hope, will fill you completely with joy and peace because you trust in him. Then you will overflow with confident hope through the power of the Holy Spirit. (Romans 15:13 NLT)

NLT: New Living Translation of the Holy Bible

The Burden of Chronic Pain

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Did you know that over 100 million Americans suffer from chronic pain daily? Did you know that $600 billion is spent on treatment and lost productivity per year because of chronic pain? That adds up to more than the cost of cancer, diabetes, and heart disease treatment combined!

The statistics mentioned are from http://www.painmatters.com, a website that is for patients with chronic pain and their healthcare providers and were cross-referenced online with webMD and time.com. At this website, you can view the Discovery Channel’s video: Pain Matters, which gives the testimonies of several chronic pain patients. Although this video was produced several years ago in an attempt to bring awareness to the subject of chronic pain, it is still relevant today.

The psychological fall out of experiencing chronic pain is a complex problem in that chronic pain sufferers are twice as likely to made plans for suicide as an attempt to regain “control” over their situations and are more likely to carry out their suicide plan vs. a non-chronic pain person. The downward spiral of chronic pain that leads to loss of profession which is tied to loss of identity magnifies the fact that chronic pain patients are three times more likely than a well person to experience deep depression.

Statistics also show that 4 out of 5 chronic patient patients turn to family members for help. 80% of these persons turning to others for help feel like a burden to their loved ones. Caregiver burnout is high among those caring for loved ones with chronic pain. Invisibleillnessweek.com reports a 75% increase in divorce rates when one partner has chronic illness.!

People with chronic pain need validation. Statistics show that the number one complaint among chronic pain patients was that they did not feel validated by their families, friends, and even their healthcare professionals. Why is it so hard for people to understand pain? Pain is subjective, meaning it can’t be measured so much by outward appearance. Healthcare professionals must listen to what the patient says about the pain which is why a pain scale from 0-10 is often used with 0 being no pain and 10 being the worse imaginal pain possible. However, the pain scale isn’t reliable because patients who feel that they are not validated will often understate their pain to hide it or overstate their pain rating to feel validated. This is why healthcare professionals often ask about sleep cycles, ability to perform certain activities of daily living, and coping methods to try to get a clearer picture of what the pain is like and if their treatment plan is working. Because of these types of communication barriers about pain, 4 in 10 chronic pain sufferers state that their doctors do not customize their pain regimen.

In addition, there is a bias toward women with chronic pain. Studies show that women are more likely to be undertreated for chronic pain than white males by their healthcare professionals. Many women are dismissed as being hormonal, which is quite insulting. A special non-profit organization for women with chronic pain was started by one of the women in the documentary: Pain Matters. This lady suffered with an undiagnosed condition for 14 years! You can learn more about her organization for women with chronic pain at: http://www.forgrace.org. There are many resources at her website, including an online petition asking for equality in pain management for women.

Another area that is a burden of chronic pain are the new laws that effect chronic pain patients in regard to opioid pain management. The Federal Drug Administration (FDA) estimates that 7 million Americans abuse prescription pain medications. Because of this drug abuse, the Drug Enforcement Administration (DEA) has made new rules that doctors must follow in order keep their license to prescribe drugs. As of August 2014, the crackdown on prescription narcotics included hydrocodone, listing it as a Schedule II narcotic. This is a frequently prescribed medication for chronic pain sufferers. This new regulation requires physicians to write prescriptions for these drugs for no more than 30 days at a time, the prescription must be written (no call in to pharmacy, faxed, or sent electronically), and the physician must evaluate the patient for ongoing treatment. The major drawback to these new regulations is that chronic pain sufferers are less likely to get the medication needed as fewer and fewer primary care physicians are wiling to prescribe narcotics and instead are referring their patients to pain management specialists.

Sharing the burden of chronic pain with other chronic pain sufferers is perhaps one of the more proactive things that the chronic pain patient can do. Not only does this provide validation from others in a similar circumstance it also allows the sufferer to be a support to others. This relationship helps lessen the burden on care-givers, lessens the incidence of aloneness that leads to deep depression and ideation of suicide, helps communication with healthcare providers, and can serve as a distraction from pain. Organizations like the American Chronic Pain Association can help with resources such as connecting you a local chronic pain group. You can sign up for their free newsletter and explore their many resources such as ways to communicate with your healthcare provider, learn more about your disease, how to track pain, and other educational materials at their website, http://www.americanchronicpainassociation.org. There are also many online groups in this age of social media, but be sure to check out these groups for a good fit, security, and well roundedness.

The greatest burden of chronic pain is on the chronic pain sufferer. If you suffer from chronic pain (pain lasting more than 3 months) then seek help from your primary care physician. Be ready to speak honestly about your pain and how it has had an impact on your life. Hoping it will go away, ignoring the pain, or being afraid to express how bad it really is only hurts the chronic pain patient more as they are socioeconomically impacted by unrelieved pain. If you know someone who has chronic pain, please reach out to them. Share the video: Pain Matters. Most of all, let them know you care.

Crisis: When You Don’t Know What to Say

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As a chronically ill person who looks normal on the outside, I find that people often don’t know what to say when I’m in a flare or I have to seek emergency medical treatment. I don’t understand how one day I can perfectly fine and the next confined to bed, so how do I expect outsiders looking in to get it? People don’t know what to say. They shuffle uncomfortably in front of you. They wring their hands. They offer to pray. They walk away. I know before my nursing education, I was guilty of some of the same behavior.

What do you say when someone is chronically ill and in pain? What do you do when someone you love is dying from cancer? What do you say when someone files for divorce? When someone dies? When someone lost their job? We humans just are not good at awkward moments. I’m certainly not good at it, but I’m willing to try to do better.

Recently my Sunday School class studied a book, “Fight Back With Joy” by Margaret Fineberg. Margaret is a Christian speaker who recently survived breast cancer. Her book is about her faith and battle with cancer. I felt the advice she gave applied to anyone going through a crisis.

If you have a loved one going through a crisis of some sort and don’t know what to say, these are great tips outlined by Margaret.

5 Things To Say When You Don’t Know What to Say

  1. “Know that you are loved and prayed for today.” This puts the focus on the person in crisis and lets them know you are concerned. The words let the person in crisis know they aren’t alone and that God is with them too.
  2. “My heart aches with you and for you today.” This lets the one in crisis know that you feel their grief but still centers on the person in crisis.
  3. “I have experienced loss, and I am so sorry for what you’re going through.” This opens up the possibility of comforting those in crisis with the comfort you received. Remember to keep the focus on the person in crisis and not your own story.
  4. “If you have a specific prayer request, I’d be honored to pray for you. But in the meantime, know that I’m praying for you and asking God how to pray for you best.” This breaks the silence and lets the person in crisis know that you are committed to pray. Often during a crisis the person doesn’t know ask you to pray about.
  5. “You are so loved! What specific thing can I do and/or provide that would help you right now? Let me know – and if you don’t have any ideas, I have suggestions.” Don’t assume you know what someone needs. This usually results in an abundance of one or two resources and a lack of other needs being met. “The refrigerator fills with casseroles that soon go bad; the closets overflow with blankets while medical bills go unpaid and the lawn isn’t mowed for months.” Offer practical ideas like mowing the lawn, watching the children, cleaning the house, doing a load of laundry but only if you are sincere in helping.

Source: “Fight Back With Joy” by Margaret Fineberg, pg179-182.

For more ways to serve those in crisis check out Margaret’s webpage: http://www.margaretfineberg.com/fightbackwithjoy.