Actemra Use Under Medicare

It has been a few months since I wrote a blog. During this time, my rheumatologist has added Actemra injections every other week to go with my weekly methotrexate injections. I’ve had some success with this dosing but the doctor has had to adjust, hold, then resume methotrexate because of liver enzyme lab values rising which happens as we all know. The Actemra injections caused my triglyceride readings to soar to 503 which is pretty bad for someone who is nine month post cardiac stent placement. Because of the high triglycerides I’ve had to go on a medication called Trilipix to lower them and am currently awaiting repeat lab tests to see if it is working. If not, the Actemera may have to be discontinued. It does seem that for steps forward I’ve had a few steps backwards too.

I am having more involvement with my larger joints. My left shoulder is is partially frozen. I can’t raise my hand to the top of my head to work with my hair. With some home exercises, I am able to move my arm behind my back which I was previously unable to do. Just this last month, my left hip has decided to act up as well. On physical exam, the rheumatologist said I was going to have to do some physical therapy or I would be facing crippling in this joint as well. Xrays were taken to see what kind of damage may be in my lower back and/or left hip. Results are pending.

Medicare doesn’t cover the full costs of Actemra which is very expensive. As we move forward, into the new year I’m not sure that I’ll be able to move forward with Actemra injections because my copay will be much higher in January as new deductibles must be met and the copay tier resets. In fact, my Rheumatologist says that most of his Medicare patients can not afford these newer injectable drugs due to the cost of the copay. Currently, I am not able to afford a supplement insurance for Medicare Part A or B because I’m not retirement age so changing the injection to an infusion would not be covered by going to inpatient or outpatient infusions.

The drug company that makes Actemra does have a payment assistance program that only costs a commercial insurance patients $5-$30 per refill but the program like many others of its type exclude Medicare patients, which I don’t understand. I pay premiums and copays just like the commercially insured but I’m not eligible for the savings programs because I’m on Medicare. Why are Medicare patients excluded? Often our need is greater and our incomes are fixed.

Medicare has had a rather negative impact on the quality of my healthcare. The most staggering blow was the loss of my insulin pump after using it for 5 years. I simply am not adjusting to multiple injections daily. Now it looks like Medicare may take my option for cutting edge injectables for the treatment for RA off the table. I did better carrying my own commercial insurance policy.

Can there beThanksgiving in Illness?

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

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

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

Online Support Groups for RA

When I was diagnosed with sero-negative rheumatoid arthritis I knew very little about the disease as a RN. I’d never heard of the sero-negative variety. It’s just not covered in RN school. I would dare say the average nurse thinks RA is a really bad form of old age arthritis because that’s what I thought and that’s what my nursing colleagues thought as they went with me on this diagnostic journey to find out what was wrong with me. I was reeling after diagnosis and was even more alarmed to find that RA is an autoimmune disorder and arthritis is just symptom of the disease process. The first thing I did was to start researching everything I could find on the subject using the internet. I found some really good informative stuff from reputable websites, but I wanted to know how people with RA felt about their diagnosis, the progression of the disease, and how their treatment plans were working. That is when I discovered online support groups for people with specific diseases.

The benefit in joining an online support group for me was that I did collect enough first hand accounts of the disease process, treatment plan, and problems encountered by RA patients that I saw some definite patterns emerge that were not always congruent with what modern medicine had to say about the illness. As my own symptoms progressed, I began to see that patients knew more about RA than many medical professionals. I also learned not all rheumatologists are created equal and there are some really gray areas on the map when it comes to diagnosing and treating RA. Back then, there wasn’t a such thing as the Rheumatoid Patient Foundation to give you the straight facts, but there was a woman trailblazing advocacy for RA patients, Kelly Young, at http://www.rawarrior.com. Through Kelly and other RA patients I learned much more about RA than I could have ever read in a book which assisted me greatly as I prepared to battle this disease.

As time has worn on, I have found that not all patient forums are the same. I do have to say that over a period of time these types of rooms can become toxic, especially the ones that use social media. You need to be aware of some signs of a poor fit for chat about RA and remember that RA patients generally don’t feel well and the human nature is such that a group of hurting people aren’t always that kind, can make prognosis seem dismal, can squash your hope, prey on you, and try to tear you down. For example, I found myself on the other end of being bullied today by a fellow RA patient in a social media site who disagreed  with me on a topic and set about to squash the conversation through childish tactics. I messaged a room moderator to handle the problem and then it was addressed in a inappropriate, non professional manner, so I removed myself from that group membership. It wasn’t for me.

So, what is the new RA patient to do? If you can’t find a local support group that meets face-to-face, I would recommend you start with http://www.rawarrior.com and explore the archives. Also http://www.healthcentral.com/rheumatoid arthritis has some very good articles written by caring people with RA that can be a help to you. If you live in a rural area and can’t find a a face-to-face support group in your area I don’t want to leave you with the impression there are not any good online support groups out there. In fact I still have membership in a few internet support groups, but do enter these with caution. The Mayo Clinic published these guidelines* about internet support groups:

Be especially careful when you’re involved in Internet support groups:

• Keep in mind that online support groups are sometimes used to prey on vulnerable people.
• Be aware of the possibility that people may not be who they say they are, or may be trying to market a product or treatment.
• Be careful about revealing personal information, such as your full name, address or phone number.
• Understand the terms of use for a particular site and how your private information may be shared.
• Don’t let Internet use lead to isolation from your in-person social network.

In addition, the Mayo Clinic published these red-flags* about support groups in general.

 

Not all support groups are a good match for you. Some may be driven by the interests of one or two members. Look for these red flags that may signal a problem with a support group:

 

• Promises of a sure cure for your disease or condition
• Meetings that are predominantly gripe sessions
• A group leader or member who urges you to stop medical treatment
• High fees to attend the group
• Pressure to purchase products or services
• Disruptive members
• Judgment of your decisions or actions

Living with RA is hard enough when most everyone around you thinks you look fine when you are so sick, which can be a driving force for you to seek out others with your condition. In this era where social media is so prevalent, it makes it even easier to turn to the internet for that support. The internet can be a little bit more brutal than the real world because people can say and do some really nasty things when hiding behind a computer screen that they wouldn’t do if you were face to face, but it’s not all bad. I was fortunate enough to find my best friend on a RA bulletin board. God was smiling on me that day because she and her husband have been such a blessing to me. The first hand knowledge I gained through other patient’s testaments, struggles and victories are more valuable to me than anything I could have read in a book or learned in a classroom.

*http://www.mayoclinic.com/health/support-groups/MH00002

Clipped Wings

I started taking Xeljanz, the new RA drug, in late July and since then my life has changed. I began physically feeling better in by mid August, much to my surprise. After being on a number of drugs for RA during the last four years, I had less and less hope with each new start of medication. Feeling better wasn’t a gradual thing. It happened literally overnight. I had one good day followed by another and another until I realized I’d had two good weeks. I don’t remember a time in the last four years I’ve ever had two good weeks!  In feeling better, I thought I could go back to living my life doing what I want and being more active. That was short-lived. I’ve induced three major flares since feeling better by over-exerting and over-extending myself. I was like a bird out of a cage but I forgot I didn’t remember how to fly so I just did a lot of wing flapping on the ground, LOL!

I always thought if I got any better that I’d be able to have a life physically beyond walking to the mailbox and back. As one good day on Xeljanz turned into weeks, I got busy. I began to assume health care responsibilities for my only surviving grandparent, I started a private bible study group, and I went on shopping outings with my sister and Mom. These are all normal activities. To the average person adding these activities to a weekly routine is nothing, but for me I was exerting my body far beyond its ability and ended up paying more spoons* than I had. These three flares I mentioned have not been as painful as flares I’ve had in the past, but each have been bad enough they required use of nitroglycerin spray for the stress they have put on my heart from swelling and pain, and I’ve literally had to go on at least 12-16 hours of bed rest following each event.

What have I learned? That feeling better because of a new medication regimen doesn’t equal remission and doesn’t mean you can resume your life as the physically active person you once were. I had a reality check. I have permanent RA damage to my body. I’ll never be 42 years old again and in the shape I was before diagnosis. I’m a 46-year-old woman with multiple illnesses that are non-curable and even life threatening. Disease impacts my life every day. As we’ve learned in Sunday School class, we are each in a different season of our life and we need to embrace that season because we will never get it back again. I hope I didn’t miss this season of feeling better by not honoring my body.

As it turns out, I don’t know if I’ll be able to stay on the Xeljanz. I see the rheumatologist in a few weeks. My preliminary labs on Xeljanz showed the medication has grossly raised my cholesterol levels. This is a known side effect of Xeljanz. I’ve never had high cholesterol readings. Should the next markers be as high, despite the newly prescribed cholesterol medication I’ve started, the doctor can’t allow me to continue on the medication because of the adverse effects high cholesterol will have on my heart. I’ve touched the brass ring of feeling better and I’ve nearly blown that brief time by overindulgence in physical activities. I’m praying I can enjoy these next two weeks of feeling better flare free and then hopefully if my lab values are stable, it will continue through winter! Regardless of the outcome, I have enjoyed this brief reprieve from chronic pain in the moderate range, daily moderate degrees of stiffness, and poor mobility. I got to spread my wings a bit and it felt good even if I never left the ground!  🙂

* Spoon Theory  http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

Living In the Moment

A few weeks ago on Labor Day I realized just how far I’d come to accept the limitations chronic illness has placed on my life in that I was not grieved that I didn’t have a full weekend planed. In fact, I had no plans and ended up staying home alone and reading a book. The most remarkable thing about Labor Day weekend was that I realized I was okay with my quiet weekend at home. Last year I’d been upset that I was no longer able to do the things I’d once traditionally done on Labor Day weekend. I was disappointed and angry. I didn’t even realize how much my outlook had changed until I found myself enjoying that book and then thinking where I’d been last year. I’ve become a woman of no plans and I rather like it.

One thing that living with chronic illness does is slow you down. The rat race falls away and you find that you no longer have the same goals that people who are living the rat race strive to achieve. RA is a disease that makes it impossible to predict how you are going to feel day-to-day so gradually you find yourself not making commitments, not obligating yourself to future dates or plans, or volunteering for events. Each day is unto itself. In a way that is a blessing. I’m finally really living in the moment and enjoying those moments free of the stress of obligation, duty, and what society says I should be doing.

Last week my Sunday School class started a new book and our first lesson was about slowing down and being content at the age you are, at the place in your life you are, and to stop rushing through life to get to the next step, the next date, the next achievement.  I hope those women never have to face a disease that forces you into living in the moment, but that instead they can be blessed by lessons and examples of others so they can learn cherish the moments without it being forced upon them. Shortly after reading that lesson, I saw a quote on my FB wall from a ministry that said: Time is like a river. You cannot touch the same water twice because the flow that has passed will never pass again. Enjoy every moment of life. This unknown quotation went perfectly with that Sunday School lesson.

This week my Granny, my only surviving grandparent, took two hard falls at the nursing home and was admitted to the hospital with some life threatening complications. Her will to live is gone. She has been returned to the Nursing Home, but still her health wanes because she is tired. She said, “I can’t see my future. I know my time has come.” and I do believe that she is convinced of that. Her eyes tell the story of how tired she is and that she is just living moment to moment. She has lead a long life of 86 years. She struggles to understand her purpose in still being here, but accepts God has a reason. She soaks up love like a sponge and returns it freely. As I sat by her bedside today watching over her as she slept, I realized I’d lived some beautiful moments with her today that I would cherish for the rest of my life.

God tell us not to worry about tomorrow because tomorrow has it’s own day. It took several incurable diseases to slow me down so I live in the moment. I find it’s the moments that make life worth living.

RA & The Weather

Do you sometimes feel like a human barometer? Join the club. Most people with Rheumatoid Disease claim that they can tell by increased pain in their joints that the weather is about to change. Scientific studies have long debated if this is true or not, but get a group of patients that have osteoarthritis or arthritis symptoms under the umbrella of autoimmune disease together and you are going to hear a resounding confirmation that we do indeed tend to be human barometers that can out-forecast the meteorologist on the local televised news!

I’ve experienced this phenomenon myself. I live in the southeastern region of Oklahoma. We have relatively mild winters but are quite prone to getting thunderstorms either from weather fronts pushing into the region or due to day time heating that causes pop up storms. I learned that changing weather for poor conditions usually effects my joints within 24 hours of the weather change. It’s only been more recently, that I’ve also been able to attribute humidity to also causing problems with my joints.

I was glad to see an article in September/October 2013 issue of Arthritis today which discussed weather and arthritis under an article called, “Climate Therapy”. In the article, studies have shown that arthritis “patients felt worse both when the barometric pressure was high and humidity was low and vice- versa – mimicking as a storm comes and goes”. In addition, researches have found that ” a 10-degree drop in temperature also corresponds with an increase in joint pain, as does an increase in barometric pressure.”  I have noticed the same thing here in Oklahoma. Many times our temperatures here in August will soar into the high 90’s and low 100’s then fall into the 70’s during the night. I kept thinking, why do I still have this storm-like pain when it’s so dang hot? Now I know. It’s the temperature change and barometric shift that occurs without a storm.

I was intrigued by this information because the nurse in me is a science geek and the rheumatoid patient was feeling rather victorious and validated that I’m not really crazy; there is a pattern to weather and joint pain. In checking resources on the internet, many of the newer studies are looking at humidity factors. Rather than quote a bunch of different studies, I’ll just summarize that most found that rheumatoid patients and fibromyalgia patients were more likely to experience an increase in pain with a increase in humidity. Several studies indicated that fibromyalgia patients are more sensitive to humidity. I have experienced this also. We certainly have some very humid days living here in tornado alley and on those high humidity days my fibro pain has been more pronounced that the rheumatoid pain. For those of us who have both diseases, we learn to differentiate the type of pain both diseases cause. For me rheumatoid pain is deeper and sometimes causes my joints to itch, burn, or just have that deep, dull ache. Fibro pain is more superficial, meaning it’s just a few layers deep more like a burn from scalding water or from a very deep sunburn. At least that is how I tell them apart. You may be different.

So, the next time that you feel an increase in pain take a look at the skies. You might just be able to predict these episodes and with prediction we can alter our actions for the day to allow more rest, and perhaps adjustment of medication can help to combat Mother Nature’s effect on our joints.

Quoted material is from Arthritis Today Sept/Oct 2013 issue, page 26. Article: Climate Therapy by Dr. Esther M. Sternberg.

Not All Rheumatologists Are Created Equal

In the field of medicine, specialists are deemed to be experts within their field. As a nurse I learned to expect that the specialists I worked with pretty much agreed with one another that xyz set of symptoms meant the patient had abc disease and there was a 123 treatment plan. When a particular specialist had a day off and one of their colleagues were covering I had no doubt that the treatment plan outlined by the patient’s specialist would be the same treatment plan that the covering specialist would agree with and follow. Patients with serious illness would often ask for a second opinion and might end up preferring one specialists bedside manner over another, but little differed in the actual treatment most of the time. The exception being a rare disease where there may not be a proven treatment plan.

I’m in my fourth year of autoimmune illness. In this time I’ve seen three rheumatologists. Each of them had a difference of opinion on my diagnoses and my treatment plan.  I’ve never experienced such varying medical opinions before in my nursing career!  Not all rheumatologists are created equal.  Rheumatology is a specialty field where there is a huge gray zone which leaves a lot of room for interpretation by the physician. The doctor can’t just look at one thing like a blood test or a xray and say, “Yes, you have rheumatoid arthritis”. A rheumatologist has to look at a multitude of factors, many of which can’t be measured by medical science. The doctor has to be willing to look at the whole and not a part.

Currently, in the field of rheumatology, about 20-30% of patients diagnosed with RA test negative for the Rheumatoid Factor and are considered “sero-negative”per the Arthritis Association. For years the presence on the rheumatoid factor on lab results was the definitive piece of the puzzle that confirmed you have RA, but current data shows that some people who test positive actual do not have RA.  Even x-rays alone are not enough data for a physician to arrive at a diagnosis of RA unless you already have bone deformities. In fact, in the early stages of rheumatoid disease, the radiologist reading a routine x-ray may mis-classify changes seen as osteoarthritis. To diagnosis a patient correctly with Rheumatoid Arthritis, it takes a doctor who is willing to spend the time on those initial appointments to collect your medical history, conduct a thorough medical examination and listen to what you are saying. In the current medical climate of booking multiple appointments in a time slot and not taking the detailed time it takes for diagnosis, many patients are misdiagnosed.

My best advice to anyone seeking a rheumatologist for the is to do your homework. Check to see if the physician is board certified in rheumatology. Most rheumatologists are internal medicine physicians with a sub-specialty of rheumatology. To be board certified they have to meet certain clinical guidelines of number of hours trained in rheumatology and they must pass the rheumatology examination. If they are a fellow of the American College of Rheumatology that means that they have paid membership to seek training and keep up with new developments in the field with others of the same specialty, but is not the same as being board certified. You can also call your state medical licensing board to ask if your physicians medical license is in good standing which may reveal if your physician has lost a malpractice suit, has restrictions on his/her license, or any disciplinary action. You can also check online sources such as vitals.com or healthgrades.com to see how patients rate the physician. In addition, be prepared for your appointment with a list of your current medication, a list of your current physicians and their demographic information, a list of your medical history that includes your allergies, surgical history, history of hospitalizations. Most of all, if you don’t feel the diagnosis you have been given feels right or you feel uncertain about the treatment plan or the physicians doesn’t listen to you or makes your feel they don’t have time for you please seek out another rheumatologist for a different patient/doctor relationship fit or a different opinion.

I’m currently seeking out my 4th rheumatologist. It is taxing but I’m paying for medical care and I deserve to make sure I have a physician who is interested in me, has time for me, and listens in addition to proving to me that they are a good clinician. As a nurse, I never understood patients who stayed with a doctor they didn’t like or felt dismissed them. In trying to advocate for patients, I came up with a great analogy that brings home the point that medical care is a service you pay for. I would ask my patient, “If you had a car that kept breaking down after taking it to your mechanic several times and that mechanic wouldn’t listen to you and kept charging you for services, would you keep taking your car to that mechanic?” The answer was usually a resounding, “no” and I’d point out then why do you value your car more than your body? Doctors are human and they are occasionally wrong. Don’t be afraid to exercise your patient rights and hire a physician that is qualified, with whom you have a rapport, and most importantly is someone you can trust.

Finacial Aspect of Chronic Illness

There is an aspect of chronic illness that isn’t talked about much, but is very taxing to the person suffering physically and that is the financial toll that being sick takes on one. The stress that financial burdens carry can contribute to exacerbation of  illness. At one time during the last six months I found myself making monthly payments to eleven different health care providers which encompassed hospitals, physician offices, ER doctors, radiologists, laboratories, and medical equipment companies. It can be very overwhelming when you feel so bad physically and find yourself being bogged down financially with threat of collection agencies and possible law suits.

In September 2011, I filed for social security disability. This wasn’t an easy undertaking and I weighed the decision heavily. In the end, I realized that I could not work in any capacity doing meaningful work as a nurse or otherwise. My rheumatologist agreed that my disease had progressed to the point that I needed assistance, but warned me that it would be a difficult transition because the number of people who have abused the disability system have caused the guidelines for approval difficult to meet.

Filing for disability was a very scary for me as a single person. You can’t earn any income while waiting for the disability application to be considered. I had a 401 K account I’d rolled over to an IRA years ago and I ended up tapping that for a set monthly allowance minus the penalty for early withdrawal and taxes. This small nest egg sustained me financially while I waited for disability to come through. I would have been forced to move in with relatives and sell all my things if I had not used that IRA account. Maintaining my independence was very important to me.  My first application was denied, but my second application was approved in April 2012 with a disability date of Nov 1, 2011. I was very ignorant about the process and hired a law firm that just deals with disability from the beginning to help me which ended up being another financial burden because it was a con. For those of you who are considering filing for disability, you do not need the representation of a lawyer unless you’re application has been denied. The social security people are not your enemies. In fact, they assisted me more than the law firm I hired and I never ran into a single person that I thought was mean, trying to take advantage of me, or withholding information. It was the law firm that was secretive, manipulative, and failed to do their job. This company failed to tell me that even if your application is approved on the first round, there is a six month waiting period before you can draw your first check. Back pay doesn’t start until that 6 month period has been met. I had been counting on the back pay I thought I would get from the date of my first application to pay medical bills and when I learned that it wasn’t coming I was more than upset, I was in financial distress. No one told me that there was 24 month waiting period from the date of disability until you are eligible for medicare either so my medical expenses were coming out of my pocket.

I had six months of medical bills I was making small payments on thinking I’d pay off the balances when I got my back pay from social security. My first check from social security was deposited in my account in May 2012, six months after my initial application so I did not qualify for back pay. COBRA health insurance coverage from my employer was going to be $700/month which was impossible to pay on a single, limited income. I found myself uninsured, but I thought it would be okay because once I got disability I could go on Medicare. What I didn’t know was there is a 24 month waiting period from the date of disability until you are eligible for Medicare. This meant I needed to carry private care insurance. I was able to qualify for Oklahoma’s High Risk Pool health insurance, but it is far from ideal. I have a $2000 deductible and once that is met the insurance only pays 80% of the bill. I’ve accumulated a lot of medical debt, so much so that I’ve considered filling bankruptcy once I am on medicare later this year. The income on disability for me is under $1500 per month. It’s hard for a single person to live on that amount of money. By the time the rent and utilities are paid, medicines are purchased there is little left at the end of the month.

In addition to the financial strain, it feels like a part time job just keeping up with what has been billed medically and what the insurance has paid. I would recommend to anyone who has chronic illness and sees multiple physicians or are hospitalized frequently to always get a detailed statement. I have found numerous billing errors and hidden charges. One of the most outrageous hidden charges was an additional $75 for a Saturday office visit. When the Saturday appointment was made I was not told of the extra fee and it was not posted in the office that there was a $75 charge for a Saturday visit in addition to the routine office charge. I could write a blog on the billing errors I’ve found on the detailed billing statements. I’ve learned to keep a log of the date/time of my office visit and a note about what was done during the visit or what the doctor and I discussed. I have a file for each physician I see and these notes go in that file along with receipts and insurance statements for that facility. This log book has helped me many times when I’ve been falsely billed for services that were not rendered.

Do not ever loose sight that a health care facility is a business. They cut staffing and play around with the billing codes so they can make the most profit while delivering standard medical care. Before you know it, a disease you don’t even have will show up on your medical record because a coding clerk entered a billing code for maximum reimbursement for a lesser symptom. That may mean the insurance paid more money, but I was still left with 20% of those hyped up charges because of fudged billing codes. Because of staffing cuts, the office staff is more likely to make errors in your billing. In addition, the medical staff is short so they may not have time to mark your billing sheet properly. Always ask for a copy of this medical billing sheet that you will usually hand to the receptionist at the end of your visit. It is from this sheet that the billing clerk enters codes into the computer system for maximum return on their claims. They don’t always get it right. This might sound like a taxing job and it for the most part, but when you are on a limited income with no safety net every dollar counts. I don’t have a wealthy family that can bail me out. When hospitalized, ask for a detailed statement as soon as you get your first bill. Review the charges carefully and decide if this was reflective of the care you received in the hospital. Most of the billing issues I have disputed are from the medical offices. Keep in mind that unless your doctor owns the business, he or she is just an employee and has no idea what is going on with the business end of things so it doesn’t serve you well to be angry with your physician. You should make your complaint with the office manager.

Helpful tips in review:

1. When filing for disability, make sure you have six months of disposable income to support you and your family at the least. If you don’t feel that you have a clear-cut case for disability, the process can extend up to two years while filing and re-filing your claims.
2. Understand that if you are awarded disability, you will not draw a check until 6 months have passed from your first application. For example, if you filed Jan 1st and received an award letter March 1st you still would not get a check until June 1st. On the other hand if you filed Jan 1st and did not received an award letter until September 1st you would be eligible for 2 months of back pay.
3. If awarded disability, you are not eligible for Medicare for 24 months following your disability date. Your award letter should give you the date that they consider you became disabled. It is not always the date of your application.
4. Ask for detailed billing statements from hospital visits and review them to see if the charges match the care that you received. You might find a charge for a bed pan when you were able to get up and go to the bathroom on your own and never required one. You could be erroneously charged for a medication that you never taken. It is in your best interest to go through the billing statement and discuss any discrepancies with the business office in a timely manner.
5. If you can not pay the balance on your medical bills, do not let them sit unopened in a stack because you are upset. Call the business office of the health care facility and see if you meet their charity guidelines. Some people on disability income do draw so little that they fall in this range. There is an universal range of income for charity, meaning each facility has its own guidelines. Just because you didn’t meet guidelines at one facility doesn’t mean you won’t meet guidelines at the next, so it never hurts to ask. Also do not agree to paying more than you can afford. It is their job to pressure you into making the largest payment possible. If $5/month is all you can do, it’s all you can do. If it’s not acceptable to the facility then make those five dollar per month payments anyway and if they turn you over to a collections agency so be it. When you are financially strapped there isn’t a lot you can do about it, but if you agree to pay more than you can afford and fail to make those payments it’s hard to argue in court, especially if you signed a payment agreement.
6. Always ask for a copy of the billing sheet at the physicians office. This is usually the sheet that the doctor or nurse will ask you to hand to the receptionist on your way out. Now that a lot of offices are computerized, you might have to ask the receptionist to print this out for you when you are setting up your next appointment. I always tuck this billing charge sheet and a note about the date, time, and what happened in my visit into a file for that physician. I also look for my insurance statement on visits and when those come in, I staple it to that visit and compare my receipt of what I paid for the visit to what the insurance company says I owe. This has helped me immensely in disputing false charges.
7. If you do find yourself dealing with a collection agency, you can negotiate. Often, they will work with you if you are sincere and honestly tell them that you are chronically ill and on a limited income. Granted there are some really pushy people out there that want their commission on hauling in your debt, but there are also some companies that realize recovering a portion of the balance is better than nothing at all.

I haven’t found a way yet for the financial stress of chronic illness not to get to have an impact. The fact is I owe more than I make. I am holding on for Nov 1, 2013 when I am eligible for Medicare. Even then, money will be withheld from my disability check for Medicare but it is nothing like the $300 premium I pay now and I will not have a deductible to meet. I think finally being able to drop the private insurance and go to Medicare will give me some breathing room in the budget. I hope the insight I’ve provided will help someone else out there who is struggling financially. Knowing the facts and having a plan helps diminish stress when you find yourself in any crisis.

Brain Fog Related to Rheumatoid Arthritis

Brain Fog. What an odd little term. I’d never heard of it as a diagnosis before as a nurse. In fact, had a patient told me they were having “brain fog” I must admit I would have probably cocked one eye brow and looked at them questionably begging for further explanation because that is not an approved medical term or diagnosis.  But before you get angry with me over my seemingly superior dismissal of “brain fog” as a symptom, let me tell you that  I can attest that brain fog is quite real because I’ve experienced it myself. The phenomenon begs further study by the medical community as it is a patient driven description of a set of common symptoms effecting cognition. Brain fog effects a larger number of people than one might think and it’s not isolated to RA. Many chronic illness patients experience brain fog.

As far as brain fog  relates to RA, it is a cloudy feeling in your head as if a literally “fog” has settled over your brain causing you to feel like your mental function has slowed.  You can think of it in terms of how much data is being processed by your computer at one time and how the number of processes active at one time can slow down the speed of the computer or even cause it to crash. When I am experiencing brain fog, it feels like the symptoms of rheumatoid disease: the pain, stiffness, mobility impairment, and swelling are all taking up the processing speed that my brain would normally use for data processing. Phone numbers that would normally be on the tip on my tongue are lost the in the fog. I forget what I was going to say in mid-sentence as if there were a glitch in my software. I often cant’ find the right word choice and in my struggle to communicate people fill in the words for me. I also have trouble accepting new information and will look at someone talking to me blankly as they give instruction or are expecting me to follow along with a story they are telling me. It’s quite disturbing for me and those around me. “Huh?” is a common response when the synapses catch and I realize I’ve just missed a part of the information my fogged brain is trying to process. Some might be dismissive and say everyone has a little forgetfulness as they age, but I assure you that the feeling one has with brain fog is different from those sensations. I’m 46 years old and I know that I have normal forgetfulness regarding where I last laid down my keys. This is quite different. When having an episode of brain fog I am quite aware of what is  happening, but I can’t fix it.

Brain fog coupled with declining mobility was the reason I left my hospital career as a oncology nurse. I could no longer walk the halls and physically meet the demands of patient care, but I also was having difficulty making quick decisions that nurses are called to make every day in this fast paced setting. I tried to accommodate my illness by changing to a nursing desk job as a case manager and found that although I was not as physically taxed, the brain fog definitely changed my job performance. I could no longer multitask, meaning that answering multiple phone calls, while trying to interact with a coworker at my desk, while retrieving information from the computer system became too overwhelming. I was frustrated and it showed in my voice, on my face, and was mistaken as inability to interact well with coworkers. I simply could not perform at this level while dealing with chronic pain, joint and mobility issues, and being stressed in this way. This was a marked difference in my ability to perform well in the workplace. Prior to being diagnosed with RA, I had many job performance reviews that touted I was a gifted with organizational qualities, that I was a team player, and well liked among my co-workers and held in high regard among my peers as a senior nurse.

Currently, it is not clearly understood by the medical community what causes brain fog in patients with autoimmune diseases such as RA. Never assume that brain fog is just part of symptoms that go with RA because sudden onset of cognitive symptoms could signal a medical emergency. You should always communicate clearly with your physician the symptoms you are having rather than using the term “brain fog” to describe a set of symptoms because the symptoms I associate with brain fog may not be the symptoms you associate with brain fog and key diagnostic information could be missed by your healthcare provider. Impaired cognitive ability could be a side effect of medication, a vitamin or mineral deficiency, or characteristic of other disease processes. Unless your doctor says that the set of cognitive symptoms you are having are related to your autoimmune disorder diagnosis, never make the assumption you are having brain fog . (See: http://rawarrior.com/brain-fog-testing-cognitive-dysfunction-with-rheumatoid-arthritis-disease/)

Chronic Pain Secondary to Rheumatoid Arthritis

Someone I care about asked me once what it was like to be in chronic pain and I remember giving them this descriptive explanation that was almost on the verge of being theatrical because I wanted to convey in the most explicit way that it was truly awful, but mostly I wanted them to believe me. As my sero-negative RA advanced, I was experiencing pain like I’d never had before in my life.  As a nurse, I couldn’t believe that people endured pain levels that were ranked at a 7 or 8 on the 0-10 pain scale with 0 being no pain and 10 being the worse pain you’ve ever experienced without treatment.  Because pain is not a primary symptom of RA I was unprepared for the tenacity of the pain and I felt isolated. I quickly learned through online communities of RA patients that I was not alone in my suffering. I felt validated, then I was outraged because physicians seem to dismiss pain as a primary symptom of rheumatoid arthritis. I couldn’t understand how this could happen because after pain had robbed me night after night of restful sleep, I was so miserable that I just wanted to close my eyes and not wake up. I wasn’t suicidal by any means, but I just didn’t want to live with pain anymore. When I initially addressed this with my rheumatologist, he said, “I don’t treat pain. You will need to see  your primary care physician or a pain management specialist”.  As I turned back to the online community I found that many patients were reporting that their rheumatologist would not address their pain and as a result, the patient felt that they should just “suck it up and deal with it”. As a nurse, I couldn’t believe this was happening. As a patient, it was unacceptable. I was astounded by the misconception that this type of pain was being dismissed as  “just arthritis”.

In recent years there have been an increase in reported cases of prescription drug abuse. This problem is what is driving more and more physicians from prescribing narcotic pain relievers. We live in a era where malpractice law suits are common. Physicians are reluctant to prescribe narcotics for patients due to the potential for drug overdose or addiction. As a result pain is being under-treated by healthcare providers. Physicians would rather ignore treatment of chronic pain associated with a illness like RA than have to adhere to the guidelines for dispensing narcotics and to bear responsibility for any prescription drug diversion or abuse.  In fact, it has been recommended that the FDA restrict narcotic prescriptions t0 90 days for non-cancer pain. (See:  http://articles.latimes.com/2013/mar/26/local/la-me-rx-label-20130327)

Chronic pain is a medical diagnosis sometimes called CPS (Chronic Pain Syndrome) and is defined as pain that is constant in nature that has lasted more than three to six months. (See:  http://emedicine.medscape.com/article/310834-overview)  As rheumatoid arthritis advances to the moderate to severe stage, chronic pain is a reality. As I began treatment with biological agents to slow the progression of RA, I had false hope that biological agents would take the pain away. In retrospect had I obtained good pain management, I may have had a more realistic view of what the biological agent could do for me. For 2 years my focus was treating my pain and doing whatever was needed to make the pain go away; however, this was not the rheumatologists goal. His primary goal was to put the disease in remission. Please let this be a lesson to anyone who is dealing with pain as a chief complaint with RA.  Make sure your doctor hears you and treats the pain so you can spend 6-8 months waiting for a biological agent to show signs of improving your condition.

I was three years into my diagnosis when my rheumatologist finally listened to me. I remember sitting in his office and crying to the point I could not stop as I told him how sleep deprived I was and that when I did sleep my brain tried to comprehend the pain with vivid nightmares of being in a car accident so severe, the car was crushed around me. During the time this rheumatologist treated me I had gone through 4 biological agents and 3 DMARD treatments. No longer able to work, I had to file disability and was grieving the loss of career and financial security. I felt like a shell of my former self. It was only then, that this doctor relinquished and told me about a narcotic pain patch that could be worn on the skin for 7 days at a time, that would be a source of continual pain management; however, he would not prescribe it. This rheumatologist and I have parted ways, but my general practitioner did prescribe the medication. Now that my pain is managed, I am better able to cope with the debilitation of RA. Occasionally I have acute pain that breaks through the coverage of the pain patch, such as when I go into a flare, but I have medication that covers that now. My life made a 180 degree turn once I got the pain under control. I suffered needlessly for three years, delaying my treatment plan and perhaps overlooking some treatments that may have been a choice because my goals were not congruent with my rheumatologists treatment plan. I find myself starting over now with a new rheumatologist and looking realistically at treatment now that I’m not looking through the lens of pain.