Tag Archives: chronic illness

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.

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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

 

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

What Does Your Bedside Table Reveal About You?

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What do the items on your bedside table reveal about you? Mine clearly says that an arthritic lives here. I’ve learned that preparedness is a must when sick and there isn’t anyone readily available to help. Other than a lamp and alarm clock, my bedside table is littered with the following:

  • A phone – I spend a lot of time alone and sometimes I can’t get up from bed. Literally. There have been times I’ve had to call a family member to come and stay with me or take me to the Emergency Room. If I didn’t have a phone at bedside I wouldn’t be able to call for help. Calling a friend is sometimes a welcome distraction from what is going on physically.
  • Prescription Medications – I keep extra pain medication and muscle relaxers at bedside. There are no children in my home so I am able to do that. If you live with others, you can keep a small locked box at your bedside to store a few extra doses of medication for those times you can’t get up or getting up would mean increased pain.
  • Water – Every night before I go to bed I put a glass of water on my night stand or I open a bottle of water to break the seal then lightly put the cap back on and put by my bedside. It is important that I remember to open the bottle because I may not have the ability to open it when I need it during the night or the next morning due to stiff, painful joints in my hands/fingers.
  • Topical Medications – I have a prescription liquid topical that I can put on my tendons and joints that helps temporarily dull the pain. I also have a slew of non-prescription topicals that help to some degree. The ones that work best are within reach.
  • TV/DVD remote control – Sometimes watching mindless TV shows is a welcome distraction or the background noise of listening to the nightly news reel lulls me to sleep.
  • Kindle – I have difficulty holding thick books now so I love my Kindle. I can read while in bed which is another great distraction when I’m not feeling well.
  • Bible – Sometimes seeking out the Lord is the only thing that works for me to help me feel less alone when I feel rotten. I should try that first more often!
  • Snack – Crackers, an apple, or a protien bar – Sometimes the medicine we take can cause a queasy stomach. If I can’t get up and walk to the kitchen, having something like this at bedside is smart.
  • Dog Treats – my faithful companion, Gracie, lies in bed with me when I feel awful and such devotion deserves unlimited treats!

So, what does your bedside table say about you? Maybe there are a few things I’ve listed that will help you get through your bad days when you are confined to bed or spark some forethought of your own. I hope that some of the things I keep at bedside caused you to smile. Chronic illness can isolate even those of us who live in a household of people. Having what you need at bedside can help you feel like you are maintaining some degree of independence too!

In addition to having a prepared bedside table I also have the following in the bedroom:

  • Electric blanket on the bed – I prefer to keep an electric blanket on the bed most of the year vs a heating pad. I’ve seen burns on patients who fell asleep lying on a heating pad (even those with an auto-shut off). I only use a heating pad when I am sitting up, alert. Most of us take drugs that suppress our immune system. Because of the suppressed immune response infection is likely and the failure of skin grafts adhering is high.
  • Cane – I have a off-set cane near the bed so when I’m stiff and can’t trust my knees I can get to the restroom more steadily. I try to keep a clear path to the bathroom. Throw rugs are secured with a non-skid backing to prevent falls.

Being confined to bed for even a short time is no fun at all, but it is sometimes necessary when disease flares attack your mobility. Think about what you need during a flare that confines you to bed and put those items within your reach to prepare yourself for a flare situation.

Broke, Broken, Brokenness

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No one ever said that life would be easy. In fact, the Bible reveals followers of Christ face many trials. I know I’ve found this to be true in my Christian life. Chronic illness has been one of the most difficult trails I’ve faced when I have experienced what it is to be broke, broken, and to face brokenness. It is my prayer that you will be blessed by this entry that is biased toward my Christian view point.

What does it mean to be broke? Websters says “broke” is a state of not having any money. I am broke. I’ve never been so depleted financially than I have in all my life than I am now. Being single only compounds the problem as there isn’t another income coming in the home to offset expenses. At the same time I’ve never been more rich in spirit. God has renewed my love for his Word and has given me hope and peace where there was none during the darkest hours of illness. I am absolutely convinced that if it were not for my faith, I would have given up the fight and let illness consume me. There were many days I did not want to live, but my faith got me through and peace and hope were restored to me as I delved in God’s Word and prayed for  His intervention.

Webster’s defines broken as “violently separated into parts, damaged or altered by breaking, having undergone or been subject to fracture, violated by transgression, disrupted by change, made weak or infirm, subdued completely, cut off or disconnected, reduced in rank, disunited by separation”. Are RA patients broken? In some ways yes and in others no. My body may be broken, but my spirit is not! My primary care doctor tells me that I look too well to be a medical train wreck on paper. He means that to be a compliment and not to add the the “you don’t look sick” phrasing we as chronically ill patients hear so much with the implied, so you must not be sick. I hear RA patients say all the time that they feel like a shadow of their former selves and I will admit that I’ve been there, but the wonderful thing about God’s grace, mercy and love is that in my weakness he is strong (2 Corinthians 12:9). He is the potter and I am the clay.

I’ve been broken in some character shifting ways that are more pleasing to God. Until I lost my income and my status as a charge nurse at a well known hospital I didn’t know I carried so much pride in my education, career, and ability to earn a living on my own. It has humbled me to have to admit to others that I am ill to the point that I can no longer work and that I am in fact drawing my social security due to disability. Since I fall into that group of chronically ill people who don’t look sick, I am often judged when I admit I am disabled. I see the other person’s eyes take inventory of my physique which is on the plus size and I see the immediate judgement that labels me as being lazy, fat, and bilking the system. That is humbling! How do you stand up for yourself in those instances? I don’t since my pride has been broken. God knows the condition of my body so what do I have to fear from man? (Hebrews 13:16)

Another way my pride was challenged was by being presented with acts of charity. Prior to being ill, I would have never accepted charity. I was always the giver, but God has taught me there is grace in receiving and allowing someone else to be blessed by giving. I was humbled and grateful when the church paid my electric bill one month, an anonymous person put propane in my tank for winter heating, the church members had a food pounding and I was one of the recipients, and friends sent money just because they knew I had a stack of medical bills. God gave me many blessings in the lesson of humility while reshaping my character and he continues to do so today!

What is the definition of brokenness? Christians speak of being at  place of brokenness at the foot of the cross but what does that really mean? Dr. Charles Stanley says, “Brokenness is God’s requirement for maximum usefulness. Through adversity, failure, and disappointment, the Father molds us into people whom He can use.” I do truly believe that God has used my chronic illnesses to shape me so he can use me, but I want to be clear that I do not believe that God caused my illness. (Romans 8:28) Satan likes nothing better than to hear us blame God for our circumstances. The Bible promises that God is with us in our need. Psalm 34:18 says, “The Lord is near to the broken-hearted and saves the crushed in spirit”. God does not crush our spirit for that is not part of his character. He is our Creator. He loves us and in loving us He gave us free will to choose the world or Him. More importantly, He gave us His Son, Jesus Christ, who had conquered death and freely paid for our sin so that we may have eternal life if we accept that free gift so generously offered of salvation.

Being broke, broken, or in a state of brokenness isn’t always a bad thing! For me, it has been as life changing at the chronic illnesses that spurred these states of being. So many people with chronic illness feel lost, abandoned, and forgotten. It doesn’t have to be that way. You can draw strength from Christ. Would you ask Him to draw near you? He understands and He intervenes on our behalf to God, the Father. I don’t expect to be cured of my illnesses, although that is up to God, but I do know the Bible tells the weak and weary to come to Him to find rest (Matthew 11:28), that the peace of God that surpasses all understanding is ours in Christ (Philippians 4:7), and that whoever believes in Christ will not perish but have eternal life (John 3:16).

Would You Like Some WHINE with that Cheese?

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How do you perceive “whining”? Never in my life have I coveted pity from others. I can’t stand for people to feel sorry for me! It makes me cringe … literally. I have been a strong woman in my faith, values, morals and work ethic. I’m proud to be a strong woman, but even strong women have their breaking point and RA was mine.  In the past, you could present a problem to me and I was action oriented looking for a solution to get it fixed and out of the way so I could move on to the next task at hand. You can’t fix RA which lends to frustration. Frustration vented sounds like whining. That is when I realized that is how the chronically ill get labeled as whiners. Unfortunately that label can start right in your own home, the doctor’s office, in your church, or place of employment.

Why do people whine? Bottom line: because they are not being heard and/or their needs are not being met. Unfortunately, that combo is prevalent with those suffering from rheumatoid arthritis. Why?

  • Lack of general knowledge about the disease among the public, your first contact medical team, friends and family. Grass root efforts to promote a name change from rheumatoid arthritis (RA) to rheumatoid disease (RD) or rheumatoid autoimmune disease (RAD) have been slow in coming. By continuing to have the word, “arthritis” in the name of the disease folks don’t realize that arthritis is a symptom of a bigger disease and limit its effects on the body. In fact others tend to think of RA as a version of arthritis due to aging (osteoarthritis).
  • Inadequate management of the symptom most bothersome to the patient: pain. Pain is what drives the rheumatoid patient to the doctor, but it’s not the primary focus of the rheumatologist who has been taught that if you prescribe the correct drug cocktail to halt to progression of disease the patient’s pain will improve and the patient has a chance of remission. I’ve not once heard of a patient seeking a rheumatologist because her finger is growing crooked! No, it’s because it hurts like HELL! Until rheumatologists change their focus on first getting the pain controlled, then looking at these long term treatment plans which are a shot in the dark (I’m going on 5 years with unchecked disease) then the patient/physician relationship will be compromised and synergistic solutions will be lacking.
  • Presumptions of others: you don’t look sick therefore you must not be sick.
  • Financial burden. When a biological agent costs in the thousands of dollars per month this puts a hardship on socioeconomic status, a burden on the family, and a preconceived burden on the public as one falls into disability.

If you know someone who has RA or is chronically ill, please try to look beyond the ” whine factor”  if indeed someone is whining because underneath is a person who is hurting both physically and mentally, just wants to be heard and accepted not necessarily fixed, and who needs others to at least try to understand. A little compassion goes a long way. Consider how you’d feel if life as you know it was yanked away from you because you became sick and try to approach your chronically ill loved one with that type of empathy.

If you are the one doing the whining, then I say:

  • Try to pick one or two people in your life to truly confide in and with whom to share your struggles. Getting your need to be accepted and heard met is key to decreasing the whine factor.
  • Be open-minded. It’s easy to develop a callous toward solutions when you’ve been told that XYZ cream, diet, exercise program fixed so-in-so. As a nurse and a patient, I can’t turn off 16  years of nursing education and practice. I try to give my fellow RA’ers a hand up by sharing my medical training when asked or I hear a whine. A whine is a need. Not all respond favorably. If someone goes to the trouble to help you when you’ve presented a need, please don’t cut them off at the knees. Instead see it as a blessing that at least that person cares enough to try to help.
  • Communicate your needs to your medical team and take control of your medical care. You are paying them for a service and if your needs for this service are not being met, then consider hiring another team.
  • Don’t allow your emotions to control you. Refrain from punching someone in the face when they ask literally or figuratively, “would you like some whine with that cheese?” and instead use it as an opportunity to reach out to someone by expressing yourself: “I’m sorry you feel as though I was whining. I’m going through a rough time right now and I could use some help,” then don’t be afraid to name the type of help you need: a hug, prayer, time together, back rub, comfort, a ride to the doctor’s office, etc… People become deaf toward whining, but are quick to respond to meet a need if they know what that particular need is, especially if they care about us. We only have to ask.
  • Be wary of bitterness. Slight after slight from others begins to become a brick wall where you start to close yourself off and categorize everyone as the enemy.  There is a difference between what is perceived as whining and what is pure venom.
  • Smile more. Try to find some joy in the simplest things by counting what blessings you do have instead of focusing on your have nots. For a while I fell into a slump of counting have nots and it was harmful to my attitude and outlook on life. Feeling sorry for yourself just doesn’t help a thing. Each person can find at least one thing per day to be thankful for even if it’s as simple as the sunshine on your face.
  • Know that you are not alone. There are support groups for RA patients online and demographically.
  • Trust in God. Even if there isn’t a single soul in your life that cares, God cares. Pour your heart out to him. He is always with you and he always listens. I’ve prayed for a cure for 5 years, but I’m not discouraged because I know if I’m not cured in this life I will be in heaven. My faith gives me a peace and hope in my heart.

Note: If you are newly diagnosed it’s perfectly fine to whine and carry on, scream, cry, beat the pillows but after a while you need to begin to educate yourself, take charge of your medical treatment and be a participant in your care. Do not allow yourself to wallow in your emotions. Try not to strike out against those closest to you in anger. You might find a blog I wrote about the grief associated with RA last year a helpful start.

Would I like some whine with that cheese? Why, yes please! A little compassion for a start. 😛

The Greatest Gift

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Christmas is a busy time of year for most people, but it can bring unique challenges to those of us who have moderate to severe RA and are disabled. Society tends to demand that we participate and be jolly and merry, but for some all is not merry and bright. In fact I’ve read some dismal posts online from fellow RA’ers who are spending Christmas alone because they have been left out, left behind, or just can’t make a commitment to Christmas festivities due to physical inability. Others are so inundated with impossible tasks they are sure Christmas will be a disaster because they know they can’t perform to the expectations they have in previous years as the matriarchs or patriarchs of their families. Loss of income and inability to physically shop have stressed many who look at a bare Christmas tree skirt that in years past were spilling over with gifts for loved ones. It can be a challenge for some who have lost so much to feel like there is anything to celebrate.

If you find yourself among those who are less than happy about the holidays, let me assure you that you do have reason to have hope. Commercialism has turned Christmas into a shopping holiday and has left behind the true meaning. Christmas is the day we celebrate the birth of Christ! God loved us so much he gave his only son to us to walk among us, live like us, to understand us, and then to die for us to forgive our sins. Even if you don’t have a single gift under the tree or don’t have a tree at all, you have the greatest gift that was ever given to man, Christ. I would challenge you if you are spending Christmas alone to pull out your Bible and read the first few chapters of the book of Luke which details the birth of Christ. If you don’t have a Bible, you can read it online at https://www.bible.com/bible/1/luk.2.kjv  As you read the first chapters of Luke, it will become clear to you what the true meaning of Christmas is and it’s not the tree, the gifts, parties, or dinners. It’s about recognizing the day a Savior was born into the world for you and for me; the greatest gift of all.

As a nurse, I worked many holidays. Sick people needing hospital care don’t get to go home for Christmas. So I’ve seen the gambit of human emotion and response to being ill during Christmas-time, but none touched me more than a Stage IV breast cancer patient who was told that she should give up and go home and get her house in order. She more than any of the rest of the patients on my ward had a right to be angry, bitter, and down but she sat and crocheted scarves on her numb and tingling fingers ruined with neuropathy, a side effect of the chemotherapy she was receiving. She refused to give up. She never stopped smiling even when her body was broken with disease. Chemo had taken all her hair, even her eye lashes and eye brows, but her face glowed with an inner light. She didn’t fret over being in the hospital at Christmas, instead she had praise for the Lord on her lips for being alive at all. She listened to Christmas Carols and even had a miniature tree on her bedside table. Every nurse got a scarf that Christmas with a “God bless you”. As alone as she was in the world that Christmas, in the hospital, she never complained. Her family was out of town celebrating with other family members and there she was all alone, getting poison infused in her veins. She did not despair. She was fighting to live with everything she had.  You just knew when you were in her presence that she was blessed and you were blessed for having met her! She knew the true meaning of Christmas!

Attitude has a lot to do with improving or worsening your current situation. I don’t feel that great myself. My body has rejected one biological agent after another over the last four years. My body hurts every day. I live on a income that is below poverty level and I can’t afford nice presents for others, but I am rich in that I know I can share the greatest gift of all with others.  If you find yourself alone this Christmas, feeling down, as if you can’t go on another day, feeling that no one understands or cares how you feel let me tell you that God knows how you feel. Accept the gift of salvation through His Son, Jesus Christ, and you will never be forsaken, forgotten, or unloved. God wants you to accept His perfect gift. Will you?

Primary Care is Vital

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My PCP (primary care physician) is so kind and caring. I never have to worry if he believes me. I don’t have to convince him of how I feel. He is always supportive and he knows he can trust me as I can trust him. The rarity of that type of patient-physician relationship is not lost on me as a nurse and certainly not as a patient. I cannot stress enough the importance of having a good PCP when you are chronically ill. If you could imagine your healthcare team being a wheel, your PCP should be the hub of that wheel directing your care. All interaction with specialists should flow to and from your PCP. It only took 13 years of chronic illness for me to realize that! In sharing my story, I hope you can learn from some of the mistakes I made and make sure you have a good healthcare team in place for yourself if you find yourself suffering from chronic illness.

I was diagnosed with diabetes 13 years ago. Back then, I just had a country doctor that treated me for runny noses, sore throats and the like ever since I was a kid. Although he was a good physician, his specialty was acute illness or injury. He dabbled in managing a few patients with high blood pressure, but anything else he sent to a specialist. It wasn’t until I became a nurse that I realized that my country doctor, as good as he was, didn’t know what else to do about my diabetes because of the poor response I’d had to treatment. My country doctor died and I was forced to start all over with a new PCP.

Thinking I would get cutting edge medical treatment, I went with a brand new internist fresh out of medical school. I saw her for a couple of years, but I got tired of being beat up every check up about my weight and made to feel like it was my fault I had diabetes. My diabetes was uncontrolled if I was pared down or plump. I didn’t respond well to dietary changes or changes in medications. Rather than scratch her head about my case, she blamed me. I absolutely dreaded going to the doctor at that time and felt like such a colossal failure as a patient and a nurse. I’d been a nurse for four years before I had the fortitude to ask for a endocrinology appointment. At the time I was a LPN studying for my RN licensure while trying to work full time and I was stressed to the nth degree. I’d had it with being berated by my PCP about my weight. I’d almost start to hyperventilate when the tech would call my name in the lobby and then invite me past the clinic door to get my weight.

After having my first appointment with the endocrinologist, I felt hope. Not once did he tell me it was my fault. There was no finger pointing or blame. He came at the problem with a team approach and told me we were going to work together. I was thrilled after a few visits when he agreed to take over my primary care. I was required to notify him immediately of any illness like a cold, fever, nausea, vomiting, or diarrhea that can change the blood sugar so he could treat it immediately and adjust my insulin doses, so why did I need a primary care physician outside his care? I didn’t. That’s when I realized why I had to ask for the endocrinology appointment rather than wait for a referral. Most endocrinologists manage the primary care of their patients as long as diabetes is the only illness that patient has and that was the stipulation for him taking on my case. So, for years I enjoyed a good PCP relationship with my endocrinologist.

That all changed when I was diagnosed with sero-negative rheumatoid arthritis (S-RA). I think my endocrinologist was too kind to say, “you really need to get a good PCP” because he had been managing my care over the last seven years! He is an excellent endocrinologist, but he told me point blank, “I don’t know anything about rheumatology”. He did work with my rheumatologist during my first year of diagnosis and they agreed the reason I’d never really had any lasting response to diabetic treatment was because I was not a Type II diabetic, but that I had Latent Autoimmune Diabetes in Adults (LADA) also known as Type 1.5. I felt vindicated after those years of being blamed for my weight by the internist I’d seen previously.

It wasn’t until I was hospitalized because of complications of RA that it was apparent to me that I really needed a good PCP. I had been acting as my own PCP between these two specialists and it was stressful keeping up with what each said, sharing records and information. The two specialists were treating their specialties, but there wasn’t anyone but me looking out for my overall health.  I was woefully unqualified to act as my own PCP. When you are admitted to the hospital, they want to know who your PCP is and I listed my endocrinolgist. In this day and age of hospital care, specialists are not pulled from their clinic to admit patients to the hospital. Even though my endocrinologist told me to go to the ER and I was subsequently admitted, his name did not go down as my PCP and he wasn’t even allowed to consult on my case because I wasn’t admitted for complications for diabetes. Instead, I was assigned a hospitalist.

A hospitalist works for the hospital and is assigned to patients who do not have a PCP or whose PCP (like mine) opted not to be admitting physicians. Specialists are rarely admitting physicians. Most of the time they are consultants on a case. I had to explain everything going on with me to a complete stranger who did not know the first thing about me. As a result, my hospital stay was lengthened as the hospitalist started over at square one with me and built up to the issue for which I was hospitalized for which was a possible stroke. As it turned out, after much medical expense, my “stroke-like” numbness was actually inflammation during a flare pressing on several nerve bundles. My rheumatologist could not be consulted because he practiced 100 miles away. That episode scared me. I was the only person who had the knowledge of the combined care of endocrinology and rheumatology. I kept thinking after that hospitalization what if I’d actually had a stroke and couldn’t talk? I knew that my endocrinologist could no longer be my PCP and that I had actually abused the relationship because he told me all those years ago that he was willing to be my PCP as long as diabetes was my only illness. I’d become a complicated patient.

Complicated patients with multiple chronic illnesses need the care of an experienced PCP, preferably a MD with an internal medicine specialty in general care. We aren’t guinea pigs for the physician just entering practice after completion of medical school. You need a seasoned doctor who knows something about your chronic illness. You also need to make sure that the PCP you choose has admission privileges at the hospital you prefer and you should ask if admitted to the hospital, who would be delivering your care. Your first appointment with a new PCP should be like a job interview. After all you are interviewing someone to manage the care of your most valuable asset, your body.

I was fortunate enough to find a PCP who is a MD in Internal Medicine who has a good understanding of RA. He is perfectly comfortable with my endocrinologist handling my diabetes and they discuss my case back and forth. I was a bit worried my endocrinologist might have his feelings hurt when he found out that I had acquired a PCP, but he was relieved and thanked me for taking that off his shoulders! My PCP and endocrinologist are colleagues. It’s important there is good communication between your primary care physician and your specialists. Ask your primary care physician if they are getting progress notes and test results from the specialists and if they are not you can sign a release form at your specialists office so they can be sent each visit. If the specialist office doesn’t do this, then you need to get a copy of the visit or progress note and any test results each visit and hand deliver it to your PCP. Your PCP must be the central hub of all your healthcare in order to do his/her job effectively.

Still use to acting as my own PCP, I chose a new rheumatologist that was a poor fit for me. To make a long story short, It was my PCP that told me to fire her after I had to book an extra visit for him to treat me for complications of a drug she prescribed because she wouldn’t listen to me. This PCP stood up for me and had my health in mind. He was angry on my behalf that I’d been so poorly treated by a specialist. He arranged for a new rheumatology consult for me at the end of January and in the meantime, not wanting my RA to worsen between rheumatologists, he called a colleague for help with prescribing and ordered a low dose of methotrexate (MTX) for me. No one has ever wanted to prescribe MTX for me because a few times early into my diagnosis I had some elevated liver enzymes and a ultrasound that showed I had a fatty liver. My PCP went to bat for me reviewed my chart which revealed my liver enzymes have been within normal limits for over 12 months. He didn’t leave it at that though. He had me come in four weeks after having been on the  MTX for lab tests which revealed my liver enzymes were still normal on the new medication.

I’ve told him how much I appreciated having a PCP that I can trust and who is not put off by me being a informed patient and being so active in my treatment plan. He laughed and said, “I wish all my patients  were as involved in their care as you are,” and he meant it.  It is such a relief realizing I have a PCP who is willing to act as the hub in the wheel of my healthcare team, that I no longer have to accept that burden of coordinating all my care. Should I ever be hospitalized again, he will be my admitting physician and there won’t be a day of information gathering and needless diagnostic testing because he will know just where I am in my treatment plan. That gives me a peace of mind I never had managing my own illnesses.

Can there beThanksgiving in Illness?

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There was a time during the first few years I learned I had S-RA that I couldn’t see the thanksgiving in having chronic illness. I was on a poor-pitiful-me spiral into depression because I couldn’t escape the physical pain of this disease, I was angry over the loss of my career, and I was scared because medical issues had caused financial ruin. I know some of you have been there. For any of you who may be reading this blog and have days that are colored by the lens of pain to the degree you don’t care if you live or die, I want to shout loudly and clearly, “Don’t give up! There is hope!”

  1. Turn it over to God. I felt so alone sometimes. In my grief I’d cry over all my losses. I became resentful of others who seemed to have all I wanted yet took it for granted. My joyful spirit was crushed. Many people don’t understand this disease, but don’t let that stop you from crying out to God. He will put people in your life to help you. He sent a Christian lady to minister to me who also had RA that has become my best friend. One of the biggest complaints I hear from chronic pain patients is the lack of understanding by loved ones and subsequent loneliness and isolation. Even at my lowest point and I felt that no one cared, I knew God did. God did not pluck me out of the hell of this illness, but instead He took my hand and has walked through it with me. He will do the same for you, if you only ask.
  2. Get your pain under control. It is my firm belief that until you have a trusted physician treat your pain, that you will never be able to know if a disease modifying drug is helpful to you or not. At some point Rheumatologists are going to have to recognize that the pain component has to be addressed first and then when pain is not blaring in the foreground of every thought, you might be more agreeable to trying these treatments for RA that require months of waiting before any results are seen. Most Rheumatologists won’t prescribe or manage pain prescriptions. Seek out a very good general practitioner, preferably a MD with a Internal Medicine specialty. We are complicated patients and docs use to just treating runny noses (acute illness) sometimes are not our best choice. Having a PCP (primary care physician) who listens to you, is trained well to treat chronic illness, and will help you manage your pain is essential to fight this disease.
  3. Be kind to yourself and give yourself time to adjust. Rather than lamenting over all the negatives, try each day to be thankful for something you have in your life. It’s contagious. Once you make a concentrated effort to see beyond the negatives you will begin to see more and more positives. That advice isn’t something I just thew on the page. You choose your behavior. Your emotions do not control you. Once I learned the truth of those facts, I felt empowered.

So, to answer the heading of this blog entry: Can there be thanksgiving in illness? Yes! I believe that with all my heart.