Rheumatoid Disease Awareness Day

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.

You 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.

Does Social Media Promote Loneliness in the Chronically Ill?

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

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

 

Can A Orthopedic Surgeon Help RA?

My best friend has sero-negative RA which has been a blessing because we tend to push each other for the best quality of life. I prodded her into getting a good primary care physician to steer her medical care to take the stress off herself and she has encouraged and helped me along the way too. For years she has been telling me how her orthopedic surgeon and the orthopedic physician assistant she sees have been such a great help to her in her management of disease symptoms. I’ve always been skeptical. As a nurse, I know the reason surgeons go into surgery is to cut! They love it. They live for it! With this knowledge in mind, I’ve always put my friend off when she suggested I start seeing an orthopedic surgeon to assist in the management of my autoimmune diseases. Not that my friend has a bad ortho because she in fact has a great ortho who has never once not listened to her or insisted on carving her body up like a Thanksgiving turkey. It is just that I know these kinds of surgeons are rare, very rare. I dug my heels in and hedged every time she suggested an ortho for my frozen left shoulder issue.

Well, I couldn’t have been more wrong. Having lived with a frozen left shoulder for two years, crying, walking the floor in pain, or not being able to tolerate rolling over on that shoulder in my sleep without waking up in such pain as if I’d been stabbed by an unknown assailant …. I gave in. The last rheumatologist told me that RA couldn’t have possibly damaged my shoulder and insisted I had to have injured it somehow. There was no injury. He insisted that I’d have to get arthroscopic surgery done on my shoulder and have it biopsied to PROVE to him that RA caused the damage to my shoulder. What an idiot! His stance on this subject ultimately lead to me no longer seeing him.

My left shoulder pain started during my second year of diagnosis back in 2010, but it drastically worsened during 2012. I was assigned physical therapy for the shoulder stiffness, pain, and mobility. I only worsened which led to physical therapy being cancelled. In 2013 – 2014 the shoulder began to freeze up. I can’t raise my hand above my head or reach backward with my hand past my hip, nor can I turn my palm over far enough to accept change from a drive through window. These are just a few of the inconveniences I’ve learned to live with. The dull pain the shoulder is constant and radiates to the shoulder blade, down the arm, and into the collar bone region. For the last year, my primary care physician has had me doing exercises for a frozen shoulder that has keep the shoulder from getting any worse, but has not helped it improve the condition.

The last straw was a few weeks ago when I found myself crying in front of the bathroom mirror trying to raise my hand to my hair to part it off and style it. I just couldn’t do it. I made an appointment and got my chin length hair cut into a boyish pixie style and I also made a new patient appointment to see an orthopedic surgeon. The pain in the shoulder is constant. It wakes me up at night hurting. I just turned 48 years old earlier in the month and I knew I couldn’t endure another 2 years much less 20 more with this shoulder like this. I figured if the ortho didn’t have any other alternatives to offer besides cutting on my shoulder, then he wasn’t the one for me. Symptoms had finally pushed me to the point I was willing to take a risk on another specialist. I did my homework in picking out a orthopedic surgeon and ended up choosing one I had previously worked with as a nurse because he had the best patient reviews and was the chief surgeon of his orthopedic group.

I saw the ortho on Tuesday and without looking at my x-rays or the baseline labs and radiological reports I brought with me to build my case to “prove” I have RA, he looked at my hands and examined my shoulders and proclaimed, “This damage was caused by rheumatoid arthritis. How long have you had it?” I know my face must have registered a look of shock! What doctor have any of us ever seen that makes a proclamation like that? Not even rheumatolgists believe us until we spill blood, tears, and have a hissy fit, right??? He told me I have adhesive capsuilitis that is severe in the left shoulder, that in layman’s terms is a “frozen shoulder”. He told me my right shoulder has moderate adhesive capsulitis and if not corrected would end up like the left. I told him I didn’t have any injury to either shoulder and he kindly explained that the constant inflammation had left scar tissue/adhesions in the shoulders. In his best Texas drawl, he said, “Sweetie, why did you wait so long to come see me? You don’t have to live like this!” and I almost swooned at his feet! He shook his head, aghast that I had endured home exercise for a year, lived with the condition for so long, and told me flatly the rheumatologist was wrong. He said, “I can help you!” and I had to blink back tears because he was so firm in his conviction.

I now have some hope that I can regain use of my left arm fully. I will go in on June 3rd for sedated manipulation of the left shoulder. A anesthesiologist will put me under while the orthopedic surgeon manipulates the left arm to bust loose the adhesions that have formed around the rotator cuff due to chronic inflammation caused by rheumatoid arthritis. He explained that he cannot do this with a local injection to numb the shoulder because it is too painful and he needs the arm fully relaxed to manipulate it. He also said the loud popping sounds of the adhesions breaking is alarming. It will be an outpatient procedure followed with 10 business days of physical therapy. He will also administer a strong steroid injection along with a numbing injection to the left arm shoulder. While I am under anesthesia, he said he will also inject the right arm shoulder with steroids to help prevent it from freezing up.

If you think you might have a frozen shoulder or would like more information on “frozen shoulder” or adhesive capsulitis, please visit this link from the Mayo Clinic.http://www.mayoclinic.org/diseases-conditions/frozen-shoulder/basics/definition/con-20022510

You don’t have to live with this type of limited mobility. I will write a follow up blog to let you all know how I do with this procedure.

What Does Your Bedside Table Reveal About You?

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.

What is a Flare?

Just what is a “flare”? Medically speaking the term is not recognized as a medical condition because a set of guaranteed symptoms cannot be assigned to the term.  “Flare” is the name that patients refer to as an exacerbation of symptoms that one normally may experience from time to time as a set of symptoms associated with illness, but magnified. To put it simply, flare means to break out or intensify rapidly per the Merriam Webster Dictionary. Because autoimmune disease patients have adopted this terminology many medical doctors recognize the term, “flare” as being a rapid intensifying of symptoms associated with a chronic disease.

There is much debate among patients with autoimmune disease as to what constitutes a “flare” which is why I would encourage you when communicating with your doctor to explain your symptoms during a flare vs. saying, “I am in a flare”. Using myself as an example, I have several autoimmune diseases and they don’t all flare the same. Flares vary in duration. The symptoms experienced during a flare of one disease may be different from another and if more than one disease is flaring at a time well then that gets down right confusing to me much less the physician! I have also noticed when comparing my flare symptoms to other patients with the same disorder there are some similarities but there are also significant differences too.

Remember, when communicating with your doctor about a flare:

• Be specific about symptoms
• Describe how you are feeling
• Tell the doctor when the flare started and how long it lasted
• Be sure to relay what interventions you tried that failed or helped

Most of the time, a seasoned Rheumatologist will ask you specific questions to collect the information needed about your flare. Please know that the doctor isn’t doing this to be difficult. Even with my nursing background, I remember seeing my Rheumatologist on a flare day and I rolled my eyes with an exasperated sigh of frustration when he asked, “What do you mean you are in a flare?” In my head, as a patient I was thinking, What? You’re the doctor and you don’t know what a flare is? Well of course the doctor knows what a flare is, but he didn’t know what a flare was to me vs the five patients he saw before me! 🙂

What causes flares? There is a lot of speculation about that too. Patients have identified changes in the weather, other illness, hormone shifts, stress, diet, activity level, and sometimes plain old bad luck.  Since researchers have yet to identify the actual cause of many of the autoimmune diseases out there it is no wonder physiciansknow little about what can precipitate a flare other than what patients have told them. Your own body is the best predictor of what may trigger your flare. You might consider keeping a flare journal to share with your doctor and see if a pattern emerges by documenting:

• Date of onset
• Does the date of onset correspond with cyclical events (menstrual or ovulation cycles, recurring deadlines, stressors)
• Activity a few days prior to flare – Active? Inactive?
• Weather before/during/end of flare
• Deviation from your normal diet – A friend of mine has IC (interstitial cystitis) which affects the bladder and she can usually trace a flare back to something she ingested out of her norm like something she ate at a gathering that she didn’t prepare, etc.
• Symptoms – how did they start, what was happening at the worse part of the flare, how did it abate?
• Duration of the flare
• Date it ended
• Interventions that failed
• Interventions that worked
• Observations made

In searching for patterns to my flares, it has been my observation as my disease has progressed that I cannot have several days of outings in a row anymore. I’m just coming out of a bad flare that involved three of my autoimmune diseases that lasted 10 days. The flare was precipitated by scheduling back to back trips out of town to see doctors in an attempt to get the visits done. The flare was sealed by two snow/ice events a matter of days apart. I suspected in the past that busts of activity prior to a flare might be one of my culprits, but now I’m certain. Armed with this knowledge, I can make sure that I incorporate a 24 hour rest period between outings. Yes it is inconvenient and people don’t get it, but it is what it is. I won’t go through ten days of hell again if I can prevent it!

My prayer would be that cures could be developed  for autoimmune disease so that no one would ever have to endure the insidious, life-stealing pain of a flare again. This is meant to be a practical advisory for speaking to your doctor about flares and about helping you to identify patterns to your flares. With that said, know that sometimes there just is no rhyme or reason to flares and sometimes our healthcare providers fail to listen to us because they become desensitized after hearing about it over and over again. Sadly no one but the sufferer of a flare really knows what it feels like. I would encourage you not to give up, seek a healthcare provider who will listen, and never self blame.

If you’d like specific information about how to endure a flare, the Arthritis Foundation has an excellent short article with practical advice at this link http://www.arthritistoday.org/about-arthritis/types-of-arthritis/rheumatoid-arthritis/what-to-expect/flares/rheumatoid-arthritis-flare.php.

 

 

Let It Snow? Impact of Cold Weather on Autoimmune Disease

I live in Southeastern Oklahoma where we traditionally have mild winters; however, February went out with a bang dropping four inches of sleet/snow last week and another inch this week which has tripped off my Autoimmune Disease family: Fibromyalgia, Seronegative Rheumatoid Arthritis, Undifferentiated Lumbar Spondylarthropathy, and Sjogren’s Syndrome. Bleh! I can usually handle one flare up of one of these nasty disease sisters with some grace but when multiples flare it leaves me limping along realizing just how I am at the mercy of Mother Nature.

I know some of you may be reading this with little sympathy, especially if you live in regions where the snow is deeper than the front door to your house. My apologies. I simply could not survive that climate with this disease pattern. 🙂 In fact, I’ve had a running inside joke with my autoimmune disease friends that the USA needs to make one of the islands of Hawaii a colony for AI patients. Wouldn’t that be great? A constant 70-80 degree temperature range? Ahhh, my bones would love it!

I’m not use to the impact of cold weather. I usually suffer the most in our 100 degree humid summers, but these late winter storms have caused me to have a lot of break through pain that I’m having to treat with extra medications. I’m sure I’m not the only one. Fellow suffers have known for a long time that shifting weather fronts and abrupt temperature fluctuations can bring on disease flares. So, short of moving to Hawaii, how can we tolerate snow days?

• Limit Exposure specifically for Fibromyalgia patients, being out in snow or sleet irritates the nerves in the surface layers of exposed skin in your hands and face which will set off a flare. It’s really important if you have to be out in these weather conditions wear layers and to cover as much skin as possible and limit your exposure. Exposure to the cold sets off the deep joint pain associated with rheumatoid arthritis and spondylarthropathy.
• Use Eye Wear – Sjogren’s Syndrome patients need to have good eye protection because the cold wind will further dry out the eyes and the glare from snow or ice on the ground can cause damage to already sensitive eyes.
• Don’t Rely on Your Body  – Science has proven with those who suffer from autoimmune disorders of these types can’t just simply “warm up” relying on their own body mechanisms. These diseases are caused by a haywire autoimmune system which in turn affects the ability of the autonomic nervous system to regulate body temperature effectively. You are not likely to “warm up” on your own. It’s quite common to feel like you are freezing even when indoors.
  • Dress in extra layers even when indoors
  • Use heating pads/electric blankets, hot water bottles
  • Eat or drink something hot to warm yourself from the inside out
  • Take a warm bath/shower to aid warming up your core body temperature

Although I love watching snow fall and I think the trees are beautiful decked in white, I no longer have the tolerance for extreme winter weather as I once did. The days of making snow men, collecting a bowl of fresh fallen snow for snow ice cream, or walking to the mailbox on blustery days are over unless I want to pay for shaking hands with Mother Nature in the form of pain, profound fatigue, bed rest, and extra medications. I’ll be content in watching from my window with a steaming cup of hot cocoa in hand!

Broke, Broken, Brokenness

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).

RA and Shoulder Pain

Does your shoulder hurt all the time? If you have RA or other autoimmune diseases don’t think it’s just wear and tear of old age. Rheumatoid Arthritis attacks the cartilage in the shoulder joint and can also attack the ends of the tendons which are all lined with synovial type tissue which RA likes to gnaw on like microscopic versions of the old arcade Pac Man.

My left shoulder was the first of the larger joints that began hurting consistently. My right hand is primary so it was surprising that my left shoulder would begin hurting overnight without any type of injury. The pain has been consistent in this shoulder for about two years now. The right shoulder is involved also, but compared to the pain in the left it doesn’t rank on my radar most days. (By the way it’s a myth that RA is symmetrical. Mine loves the left side of my body.)

The rheumatologist that properly diagnosed me use to give me steroid shots in the top of the shoulder or in the scapula (shoulder blades) depending on the area that hurt worse, but the shots would only last a month (they are supposed to last for three months) and the pain might have diminished but never went away. The steroid shots wrecked my blood glucose levels as I am a diabetic on insulin. It finally got to the point my endocrinologist told me that if I was going to continue to get steroid injections, to call him so he could put me in the hospital overnight on an insulin drip. “No. Thank you very much,” was my response and I stopped the steroid injections. Here we are now, two years later, and I’ve got what they call a “frozen shoulder”. The tendonitis and deterioration in my shoulder has become severe enough to impact my range of motion. At 47 years of age, I cannot lift my lift hand over the level of my head and I cannot reach back further than my hip.

A MRI of my shoulder showed tendonitis with degenerative changes yet my new Rheumatologist insists it must have been some injury. He wanted to inject steroids, but my blood sugar levels are not stable with the amount of inflammation I carry in my body and I can’t afford a hospital stay on IV insulin to sort it all out.  He wants me to see an Orthopedic Surgeon about my shoulder and that is when my Primary Care Physician drew the line and said I was not undergoing a shoulder scope to satisfy his curiosity when this is typical of RA symptoms associated with the shoulder. I’m not sure what my rheumatologist will think of this kink in the care plan because he wanted the ortho to go in and take a sample of the cartilage in my shoulder for biopsy to prove or disprove my RA status and repair any damage. Sigh. I don’t know what I’m going to do. The merry-go-round of pain, inflammation, and resulting high blood sugars has caused permanent damage to my heart. I find myself wanting to lock all my doctors in a room so bad to make them talk to each other because while they quiz me about what this one said vs. what that one said, nothing is getting done.

I found little information about frozen shoulder and how it relates to RA on the web, but what I did find, I’ve shared below. I thought was very informative and actually does link RA as a cause to the condition. Don’t let your doctor tell you that it’s always caused by an injury of some sort. As we have all experienced, RA likes to beat you up in your sleep and a joint that was fine when you went to bed might not be functional when you wake up. Learn a lesson from my experience and don’t let them start physical therapy on your shoulder unless that therapist knows as much about RA as you do or they are most likely going to push that joint too far which will cause inflammation and more damage.

From the link: http://www.frozenshoulder.com/arthritis,  in regard to symptoms: “If you have a stiff and painful shoulder, and it hurts to move it, you may have shoulder arthritis in one form or another. Sufferers complain that it becomes more painful the more they move, and also that the pain wakes them up at night. Some people report feeling a “catching” and “grinding” or “clicking” sensation when they move. Some also say that the pain intensifies following a change in the weather.”

In addition, the website lists causes of frozen shoulder: “It used to be thought of as inevitable “rustiness” of getting older, simply “wear and tear” on the joints. Now experts believe it’s a lot more complicated than that, so much so that the absolute cause remains something of a mystery. We do know that there are certain factors that play a part in developing shoulder arthritis. These are: previous shoulder surgery, a car accident or similar trauma that dislocated the shoulder, inflammation of the shoulder (primarily due to rheumatoid arthritis), overuse of the shoulder, being over 50 – most sufferers of osteoarthritis are in the over-50 group, the auto-immune disease rheumatoid arthritis – this causes the body to attack and destroy its own cartilage. It wreaks havoc in different parts of the body, and can occur in the shoulder joint too.”

Currently, my PCP who is a Internal Medicine doctor has me doing pendulum exercises at home for the shoulder to help ease the problems with the tendonitis. More than likely, the course of action is going to have to include some disease modifying drugs to work with the methotrexate I’m taking. My rheumatologist has mailed me literature to review for Actemra, Symponi, and Remicade before my July appointment. Should the shoulder exercise not improve the condition, I may be adding Othropedics to my growing list of specialists.

Methotrexate – My Full Circle Journey

It has been 5 years since my first RA symptoms showed up. My first Rheumatologist (who I only saw twice because he scared me) wanted to start me on Methotrexate injections right away. He freaked me out! Being a nurse who gave chemotherapy grade Methotrexate (MTX) infusions for leukemia patients I wasn’t going to start injecting it myself without a second opinion.

The second opinion doctor rejected MTX as a therapy for me because my liver enzyme lab reading and subsequent ultrasound of my liver showed I  was not a candidate for MTX. I had elevated liver enzymes and a fatty liver brought on by years of poor diabetic control. My new rheumatologist felt the toxic risks to my liver were not worth the benefit of therapy compared to other treatments we could try. Fast-forward to the present and I’m now on MTX injections. In many ways I feel like I’m starting over at square one. 🙂

Last fall, my primary care physician (PCP) was so frustrated with the type of rheumatology care I had received, he put me on MTX himself asking, “what do you have to lose?” My liver enzymes had been within normal limits for over a year. I’m diabetic so those lab values are drawn every 3 months religiously to make sure that the diabetes and the treatment for diabetes isn’t causing liver failure. I completely trust my PCP. He is a MD Internal Medicine doctor with vast knowledge of my disease processes. He was right. What did I have to lose? I’d plowed through a slew of disease modifying drugs and biological agents with poor results over the last five years. I submitted to treatment and while we searched for a new rheumatologist, He started me on three 2.5mg tabs once a week on Saturdays.

The nerves I’d had in starting MTX five years ago were gone. I figured I had faced more significant fears by injecting biological agents that can cause lymphoma. (Sometimes it’s not good to be a nurse when you get sick yourself. You know too much!) I started my MTX with a good attitude. I always took my weekly dose with a meal to try to avoid any gastrointestinal (GI) upset. It did not make me sick to my stomach in the beginning, but a few hours after I took my oral dose I would hit an invisible brick wall with my energy level which resulted in a feeling that I HAD TO lay down. If you have ever had a Benadryl for allergies, you might recognize that feeling that you just have to lay your head down. It was fairly common for me to sleep 4-6 hours on MTX day and through the night. This fatigue superseded the fatigue that comes with autoimmune disorders to the nth degree. I recognized this was a type of chemo fatigue I’d seen in my oncology nursing career. Some patients refer to it as “the MTX hangover” Almost immediately after starting MTX, my left hand (my worse RA area) started to improve significantly. For the first time in years I could actually see the bony structures of my knuckles and the trigger finger in the fifth digit (pinky) subsided. Because I wear a insulin pump for my diabetes I’m not allowed to use steroid therapy with MTX because steroids can greatly increase blood sugar in non-diabetics.  MTX was the only treatment I was taking for RA other than prescribed NSAIDs. I had come full circle, back to where I started treatment five years ago. MTX alone was not putting a major dent in my symptoms, but it was helping with the number of hours I had morning stiffness and the degree of stiffness present in the smaller joints.

My doctors gradually boosted my dose of MTX from three tablets to four then six over a 6 month period, checking lab work closely with every increase trying to get to a therapeutic dose range for RA without raising my liver enzymes. Once I hit six tabs I began having nausea that came on so suddenly about 45-60min after a dose that I could not control it. After a fit of violent vomiting, I would then have to lay down for my MTX hangover nap. I started having harsh flares because I wasn’t getting the full benefit of the MTX due to the vomiting. Symptoms came roaring back. Unfortunately this was happening in the recovery period of having two stents put in my heart with complications brought on by RA. My new rheumatologist discontinued the oral MTX and started me on injections that are equivalent to the oral dose I was taking. There has been no pain with the injections and I’ve not experienced any nausea or vomiting. In addition, the severe fatigue I had on the tablets has lessened significantly.

The MTX injection prescribed is preservative free and comes in a multi-dose vial.  In researching this, I discovered that preservative free vials are less likely to cause an allergic reaction. The vial is stored at room temperature. The medication is injected with a very small needle in the fatty tissue. I can’t even feel it go in which is a pleasant change from some of the biologic agent injections I’ve had before that burned like a bee sting when auto-injected with a pen. I’m very careful to use proper aseptic technique in using my vial, drawing the medication up and injecting it. Since I’m a retired nurse and a diabetic use to self injecting, I did not have to go through the in-office nurse-patient training on giving an injection. Don’t let that worry you if you have been prescribed injections of MTX or considering it. It’s a very simple process that is very similar to a diabetic injection of insulin.

Someone close to me asked me recently if I wished I’d started with injection of MTX as the first doctor prescribed. It is only human to wonder what might have happened, but I don’t allow myself to dwell in the past. I have to trust that things worked out the way they were intended. It’s okay to wonder, but I don’t allow myself to linger in that thought pattern. I know that RA has taught me a lot about what is important in life and has helped me grow as a Christian. I feel I made the decision that was right for me at the time. It was only through additional testing during my second opinion appointment that we found out my body could not have handled the MTX injections at that time due to poor liver function. Had I blindly went forward with MTX injections then, I could have permanent liver damage now. The liver can heal itself to some degree and while I was exploring other therapies that is exactly what happened. My liver is healthier now than it was in the past. God’s timing is perfect.

I’d urge anyone starting a new medication therapy to do your homework in researching the medication, side effects, and know if ongoing testing is needed to monitor your health while on drug therapy. Don’t let a medical professional force you into a choice. You know your body best of all and if you feel uncomfortable about a proposed therapy then discuss it with a trusted doctor or pharmacist. Also, don’t dismiss trying a therapy you’ve tried before or passed over when it comes to RA.  You might find yourself in a situation like me where it is the right time for a therapy previously ignored.

What you need to know about Methotrexate as a therapy for Rheumatoid Arthritis:

• MTX is technically classified as chemotherapy but it is given in very low doses for rheumatoid arthritis.
• Take the time to learn about this medication from your doctor and pharmacist and discuss the pros and cons of taking the medication by mouth or by injection. Be sure you are comfortable giving your injections using proper technique before you attempt home injection if that route has been prescribed.
• Make sure that your doctor checks your liver enzymes at least every 3-4 months while on therapy to make adjustments to your dosing according to your lab values. MTX can become toxic to the liver and you may or may not have physical symptoms of toxicity. Some rheumatologists may ask for a ultrasound of the liver and may require a negative pregnancy test before prescribing therapy and randomly during the therapy.
• Responsibly secure your medication. A dose of MTX could be very dangerous for a child or older person if taken accidentally. In addition, the medication may have specific storage and disposal instructions for oral and injection dosing. For example: Know what to do if you accidentally broke a vial.
• MTX can lower your immunity so take the proper precautions as you would when on any other immunosuppressive drug.
• Have realistic expectations about your drug therapy. Treatment for RA often involves a trail and error period of trying therapies for up to nine months. Get your pain under control first before you decide if a therapy is not working for you.
• Keep the lines of communication open between you and your rheumatologist. Your doctors should be working with you collaboratively to come up with the best treatment plan for you.

Additional Information: http://www.drugs.com/methotrexate.html