Category Archives: Rheumatoid Arthritis

Medication Management Part 5: Infusions

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Infusions for RA (Rheumatoid Arthritis) may be recommended by your Rheumatologist when oral or injectable DMARD (Disease Modifying Anti Rheumatic Drugs) alone or in combination are no longer effective in controlling symptoms or the disease process has advanced aggressively. Infusions for RA are not prescribed lightly nor should they be. There are significant side effects that must be weighed when considering if these drugs are for you. Often they are not prescribed unless the disease is to the moderate/severe level simply because of the time frame it takes to determine if oral therapy is effective. When oral therapy fails,  more often than not, injectable drugs are then tried in combination with oral therapy before infusable drugs are considered. This can delay infusion therapy considerably.

There are four drugs that are commonly infused for RA at present. They are all types of manufactured proteins but they all work differently. Your Rheumatologist will determine which is the best course of treatment for you based on your past response to oral and injectable therapies.

  • Orencia -used to suppress T-cells.
  • Actemra – used to block interleukin-6 (IL-6).
  • Remicade – used to as a TNF Inhibitor.
  • Rituxan – targets mature B-cells.

Now that you know about the main types of infusible drugs and their action, you can see that they don’t work the same which is why you might find yourself being prescribed a different infusion if another is not working to control symptoms well. Orencia and Actemra were originally available as infusion only but in recent years have been made available as a home injectable. Your doctor may still prescribe the infusible version for a variety of reasons some of which may be dictated by your insurance. Unfortunately payment often dictates where, when and how you will receive advanced treatment for RA.

All infusible drugs for RA are very expensive. A http://www.sciencedirect.com article from 7/14/17 gives an estimate that cost of these drugs per year are $36,000 to $47,000 on average. This estimate does not include the fee for administration which can double the cost in some cases. Due to rising costs, most infusions for RA are given at infusion labs on an outpatient basis.

Once the infusion has been ordered and prior authorization has been met by your healthcare coverage, the next step in infusion therapy is getting ready for the infusion which may include:

  • Referral – Your Rheumatologist will refer you to a infusion lab for your treatment. This lab may be a stand alone clinic, it may be located in a physician office building, or it may be located within a hospital. The majority of infusion labs are set up with reclining chairs in a common area with multiple patients receiving treatment simultaneously.
  • Immunizations – Carefully consider getting the flu and/or pneumonia vaccines prior to starting infusion therapy if your therapy starts during flu season between September 1st – February 28th. Infusions squelch immunity to the point that getting the flu and/or the complication of pneumonia can be life threatening.
  • Consent – Your Rheumatologist may or may not ask you to sign consent forms for the infusion. This is an agreement between you and your doctor that you understand the therapy and possible side effects.
  • Understand Frequency – Each of the infusion therapies have their own schedules (frequency in which they are given) which your doctor should review with you so you will know what to expect for purposes of time off work, scheduling child care, etc… For example, my Rituxan is given twice a year in a set 14 days apart. I just finished my June/July set and my next will be Dec/Jan. My best friend, who has advanced RA, receives Remicade every 8 weeks.
  • Patient Education – many infusion labs are now requiring patients to take a education course  about their therapy with a trained professional. If this is dictated by your insurance, it is not optional.
  • Understand Adverse Reactions – Reactions to infusion therapy for RA do happen. Often times, the infusion rate only need be slowed down and perhaps additional medication given. In order to alert your infusion nurse of any signs of a infusion reaction, you need to be aware before the day of infusion what to expect.

On the day of the infusion:

  • Positive attitude – Arriving with a positive attitude will make for a more pleasant experience for you and your infusion lab mates, lowers blood pressure, checks anxiety, and helps prevent stress induced flares.
  • Hydrate – Arrive at the infusion center well hydrated for easy of placing the IV site. Dehydration causes veins to flatten making it difficult for the nursing staff to start the IV site which may lead to multiple, painful, unwanted needle sticks. Dehydration also causes nausea which may be compounded as a side effect of the drug therapy.
  • Expect your blood to be drawn – As a precaution, simple blood tests are done prior to the infusion to make sure you are healthy enough for the infusion. (Being well hydrated the morning of the infusion aides with the lab draw too.) The infusion nurse will review the lab work and determine if it is safe to proceed with the infusion. If for any reason your infusion cannot be given because of your lab values, understand it is for your safety.
  • Take your oral medications as prescribed – It is not wise to hold any of your medication or take medication not listed on your medical record on the day of infusion. Advise your infusion nurse of any change to your medication regimen prior to start of infusion. It is wise to bring a current list of medications including: name of medicine (both prescribed and over the counter), medication strength, and time of day you take the medication along with a list of allergies for your infusion nurse. If you need to take any home medication during the infusion, please have the medication on your person as most infusion labs do not dispense home meds; however, you do need to make your infusion nurse aware of what you are taking and why.
  • Have a driver – Often anti-nausea meds and/or Benadryl are given prior to the infusion to counteract anticipated side effects. These may cause drowsiness making it unsafe to drive after the infusion. The infusion may cause you to be unexpectedly tired and having someone to drive you home is a blessing. Many infusion labs will not allow you to drive yourself home.
  • Dress comfortably and in layers – Your infusion nurse will need to be able to raise your sleeves for placement of the IV site and may also need to monitor blood pressure or perhaps place heart monitor leads for your infusion. Some infusions take several hours so being comfortable is important. The temperature of the infusion lab may not be to your comfort level so be able to adjust your clothing by taking off or adding layers; however, chills should be reported to the infusion nurse right away.
  • Be considerate of your infusion mates – Don’t wear perfume as many people are allergic and strong smells can cause those getting chemotherapy to become nauseated. Don’t talk on your cell phone and quiet the ringer – The infusion lab should be calm and quiet to allow the infusion nurses to observe patients for emergencies without distraction.  Keep conversation pleasant, light and quiet as many patients nap. Controversial subjects should be avoided.
  • Come prepared – Bring things to pass the time (electronic devices are okay as long as the sound is off and/or headphones are used), bring a pillow/blanket if these items not provided by the infusion lab, bring your own drinks/snacks (food is not encouraged as the smell can trigger nausea for some patients but dry snacks are okay). In most cases the infusion lab will have coffee, water, ice, snack crackers but check to be sure if your infusion is over meal times.

I hope you have found this series of articles on medication management helpful. This is the last entry in the series. Other articles in the series discussed management of prescriptions and refills, cost of medications and real resources for help, how to use a medication planner, and injections used in the treatment of RA.

 

 

 

 

Rituxan: The End of the Road

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Greetings from my world post Rituxan infusions! I started Rituxan in August and received two loading dose infusions 14 days apart. Rituxan works to deplete B-cells in the battle of autoimmune disease. I am seven weeks post infusion and I am feeling so much better. For the 1st time since I was diagnosed in 2009, I feel that I am on a treatment that has made a significant impact on my disease process but it took coming to the end of the road! Rituxan was the drug of last resort in my treatment as I have tried almost all the known treatments available to me. My next infusion is in late January 2017. The Rituxan infusions will be every six months as needed with weekly injections of Methotrexate.

From May – August of 2016 I was walking through hell as my diseases exacerbated and my treatment failed on Actemra. We’ve all been there: the sleepless nights, the worrying if this is your new reality for the rest of your life, the unbelievable pain, the impaired mobility, and the depression that threatens to swallow you. My seronegative rheumatoid disease and it’s ugly step-sisters were all aggravated in turn causing my diabetes to spiral out of control with blood sugars averaging 400+, and all of that tripped off my heart issues causing episodes of angina.

I saw my cardiologist in May, shortly after my 49th birthday, and he put his foot down and told me I HAD to get the autoimmune diseases in check or I was going to have a heart attack!!! That was very sobering. As I have mentioned in previous blogs, I was disgusted with the rheumatology care in my area. As a result I had seen my Internal Medicine MD and an Oncologist to manage my rheumatology care for the last year. My cardiologist told me something had to change. The pain and inflammation was too much and was stressing my heart. He also told me that the diabetes treatment needed adjusted. I left there and made appointments with my Endocrinologist and Oncologist.

Mind you I was seeing the Oncologist for management of the Methotrexate. He agreed to take me on working with my primary care Internal Medicine MD. Incidentally, he treats my Mom for her cancer, so him seeing me was a kindness. He is a Christian man and an overall stand up guy and I appreciate his willingness to help! However; my disease was advancing again and reeking havoc on my body. He told me that I was time for the Rituxan treatments and set me up with an appointment with a local Rheumatologist as a consultation for the use of Rituxan stating he had to have the input of a Board Certified Rheumatologist. That made sense to me and was fair.

My Endocrinologist was not happy with my A1C level at 12.3. Ideally, that number should be below 7. We made some adjustments in my medication regimen of oral meds and insulin. I knew until my pain levels were handled the blood sugar readings would continue to be high. I have had a difficult time getting my Endo to realize the impact the pain and inflammation have played in my diabetes, but post Rituxan my levels fell like a stone and my A1C level dropped to 9.8! I think I am making a believer out of him! In all fairness he is a great Endo and has confessed to me that he hasn’t ever had a patient with the mix of complicated diseases I have and we are breaking new territory together.

The Rheumatologist I saw did not want to re-diagnose me, thank God! I don’t know if it was the consultation order from an Oncologist that did it or that God knew I might go postal on another argumentative, arrogant Rheumatologist, but the appointment was interesting! He was reluctant to try Rituxan and recommended I at least try Arava for one month. I was not happy with his choice but felt compelled to work with him to get the Rituxan approval. The Arva was a horrible drug for me. Instead of reducing inflammation it worked to exacerbate my tenosynovitis to the point my mobility was greatly impaired and I was having frequent angina episodes. In fact, I had to have a nuclear cardiac stress test during this month. Upon return to the Rheumatologist, he did drop the Arava and gave the approval to my Oncologist to start Rituxan therapy.

The first infusion of Rituxan was over 6 hours. I was given oral Tylenol and IV piggyback bags of steroids and Benadryl prior to the infusion to help prevent any reaction. Because of the IV steroid I had to monitor my blood sugar hourly and give myself insulin as prescribed by the Endo. Rituxan is a monoclonal antibody that works against the protein CD20 found on the surface of immune system B-cells. According to medicinenet.com a B-cell is a type of white blood cell and, specifically, a type of lymphocyte. Many B-cells mature into what are called plasma cells that produce antibodies necessary to fight off infections.”  This targeting of B-cells is what makes Rituxan different from any other treatment I have tried.

Rituxan treatment is not without risk and this is why it was the end of the road treatment for me. Other than Symponi and Gold injections, I have tried all the other treatments for rheumatoid disease. My Oncologist rejected Remicade as an option because I had failed all the other TNF drugs. Patients have been known to die during or following a Rituxan infusion because of an allergic or adverse reaction. A monoclonal antibody is made from mice cells. The human body sees this as an invader and will try to reject it. This is why pre-medications are given to combat this reaction and the first infusion is given slowly over 6 or more hours to inhibit a reaction. The next infusion 14 days later was given in half the time at 3 hours since I did not have a reaction. The night after the second infusion I had some minor chills and ran a low grade fever that was relieved by ibuprofen.

I slept a lot through both infusions. The IV bag of Benadryl made me very drowsy. My Mother was with me throughout the infusions and drove me home from treatment for which I am very thankful. She helped me stay on top of my blood sugar monitoring because I was so drowsy.  I found that I was tired for a few days afterward, but I attribute some of the fatigue to the Benadryl as I have always been sensitive to this medication. I was feeling somewhat better when I received by second infusion but was feeling a vast improvement of symptomatology two weeks after my second infusion.

I saw my Rheumatologist last week and he was very pleased with my progress. The pain has been cleaved in half of what it was before. Fatigue remains. My liver enzymes did soar after the first infusion but my lab work last week showed they had normalized. I did get my flu shot in September from my primary care Internal Medicine MD but the Rheumatologist warned that I may not have any B-cells left to give immunity from the flu and warned that I need to take precautions against the flu this winter. As a diabetic, I cannot take steroids so I use prescription ibuprofen, Omega 3, and Vitamin E. This Rheumatologist recommended Turmeric 1000mg daily to my current regimen. My inflammation is better and the CRP and ESR are within normal limits on my lab report.

I have hope that this treatment is going to work. I was so afraid it wouldn’t and I would be stuck in the hellish nightmare of pain. I am doing better than I have in years and I am so thankful that my diabetes and cardiac issues are also falling into line with my improved health. Glory to God for answered prayers! Rituxan may be the end of the road for treatment options at this time, but it has put me on a new path to improved well being. Every doctor I have seen post infusion are ecstatic. People in my church say, “you look like you are feeling better”. I am better. Perhaps remission is just around the bend.

If you’d like to know more about Rituxan, I find drugs.com to be an excellent resource for laypersons about medications. Check out:  https://www.drugs.com/rituxan.html or Rituxan.com.

 

 

 

Benefits of Coloring for the Chronically Ill

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Coloring has been a favorite pastime for me so I couldn’t be more delighted when the adult coloring books with mandalas, florals, animals landed in stores this past Christmas. Prior to adult coloring becoming a fad, I was a closet coloring fiend! I have bunny and puppy children’s coloring books and crayons stashed! If anyone ever caught a coloring book in my magazine stack I’d just say it belonged to my cousin’s little girl! I didn’t want to be shamed for enjoying coloring like a child. I guess there were a lot of us secret coloring fans who came out of the closet at the same time given the explosion of books in the marketplace.

Coloring relaxes me, especially when I am coloring something that draws all my attention to detail. I now have four thick adult coloring books which I have proudly strewn through my house. I’ve traded crayons for colored pencils and markers.

Studies show that coloring something with detail like a mandala (round wheel with shapes and lines inside it) lowers anxiety levels.”Just like meditation, coloring also allows us to switch off our brains from other thoughts and focus only on the moment, helping to alleviate free-floating anxiety. It can be particularly effective for people who aren’t comfortable with more creatively expressive forms of art.”

As someone who battles chronic illness daily, I find that coloring can distract me from pain levels to a degree. Coloring requires concentration and an eye for details and mixing/matching colors. If my fingers are hurting, I’m mindful to only color for a short time and put it away instead of trying to finish a page. It make take me 3-4 sessions to finish a page and I’m usually happy with the results in having taken my time. I find it comforting to color from books with scripture from the Bible because while I’m coloring the design, the scripture is going round and round in my mind. That helps feed my soul.

I keep a coloring book and a tin of colored pencils next to the bed for those pain induced insomnia nights. Coloring helps still my mind, provides a distraction from the pain, and usually helps induce sleep. When I am a feeling a little blue, coloring lifts my spirits! I sometimes color in my quiet time with God to focus my prayers. Recently, my coloring has now drifted to Bible journaling with colored pencils and pens. This is also a growing trend in the Christian community.

Please don’t mistake coloring as art therapy. “According to the American Art Therapy Association, art therapy is a mental health profession in which the process of making and creating artwork is used to explore feelings, reconcile emotional conflicts, foster self-awareness, manage behavior and addictions, develop social skills, improve reality orientation, reduce anxiety and increase self-esteem.”* Although coloring can be beneficial mentally, art therapy involves a relationship with a therapist whereas coloring is an individual activity.

You can find adult coloring books now at any box retail store and I’ve even seen a few in Dollar General and Family Dollar stores. There is also a wide selection of adult coloring books available online from places such as Amazon. If you haven’t colored in a while, I’d encourage those of you who need to “get out of your head” to try your old childhood pastime of coloring. You might just be surprised at the benefits coloring can bring to your life.

*CNN – “Why Adult Coloring Books Are Good For You” (http://www.cnn.com/2016/01/06/health/adult-coloring-books-popularity-mental-health/index.html)

 

 

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.

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

Adhesive Capsulitis aka Frozen Shoulder

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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.