AI Disease: Blessing or Curse?

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

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

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

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.

Adhesive Capsulitis aka Frozen Shoulder

On June 3, 2015 I had a outpatient procedure called “manipulation under anesthesia” (MUA) to the left shoulder for the diagnosis of adhesive capsulitis of the left shoulder. This condition is “frozen shoulder”. The orthopedic surgeon I consulted for this condition told me that this is a common ailment for patients with my disease process: secondary to RA or other inflammatory arthritis and/or diabetes. For the last two years I was unable to raise my left arm sufficiently to get through many of the activities of daily living. The MUA was followed by physical therapy that started the afternoon after the procedure.

I was put to sleep for the MUA because I was told the manipulation of a frozen shoulder is too painful to perform while awake. The orthopedic surgeon forces the arm through range of motion, hoping to break loose the adhesions that have caused it to freeze up. It is considered a minor “surgery” even though there was no cutting involved. I was sore after procedure, but there was no severe pain associated with the procedure.

Therapy started hours after the procedure. I had ten physical therapy treatments with some minor improvement to the mobility of the arm. The orthopedic surgeon was not pleased with my progress in therapy, stating that I’d lost mobility rather than gain due to inflammation. He recommended another procedure called a mini-arthrotomy of the left shoulder.

I had the mini-arthrotomy on June 17, 2015 during which, the surgeon made a small incision about 1/2 inch long to the front of the shoulder. He did not cut into the rotator cuff, but instead manually broke the adhesions away from the rotator cuff. I was sent home that afternoon with a device called a polar ice cube, which held ice water that circulated via an electric pump through a pad attached to my upper arm and shoulder by velcro straps. I had to keep this ice water circulating through the pad for the first 48 hours after surgery to keep inflammation at bay. My arm was also in a sling. I was instructed not to take the arm out of the sling at all for the first 48 hours then only to shower and perform what is called pendulum exercises.

Pendulum exercise is simply bending at the waist and letting the arm dangle downward. Using your feet you rock your body to let the arm swing like a clock pendulum with no forced movement at the shoulder. This exercise is also prescribed to help prevent frozen shoulder. The arm had to remain in the sling for two weeks. I was given Tylenol #3 for discomfort which I took minimally.

I returned to the orthopedic surgeon’s office on June 30, 2015 at which time two sutures were removed and steri-strips were applied to the site. It’s a small wound that had already closed. I was allowed to ditch the sling with instruction to wear it only if my arm was tired or if I felt I needed it in public to protect my arm from being bumped. Rather than return me to physical therapy, the surgeon gave me some simple home exercises to do to increase mobility. His goal has been to do the most minimally invasive treatment and to avoid inflammation.

I’m to return to see the orthopedic surgeon on August 25, 2015 for a re-evaluation. I can say that I have gained mobility in my arm, but I cannot raise it well. I cannot put it in the position that a grade-school kid would in order to get the teacher’s attention but I can style my hair with more ease, turn my palm over to accept change, close my car door, and many other activities of daily living I was unable to perform before. I do not think it has improved to the degree I feel the surgeon will be satisfied; however, I am satisfied.

I lived with this condition for two years where I could not even raise my arm above the level of my left ear because I was told that my shoulder would never be right and surgery would only worsen the condition. That has not been the case. No, my shoulder hasn’t been restored to 100% mobility, but I can use it again and that is worth a lot to me.