Monthly Archives: December 2013

The Greatest Gift

Standard

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

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

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

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

Advertisements

Primary Care is Vital

Standard

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

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

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

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

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

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

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

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

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

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

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

Can there beThanksgiving in Illness?

Standard

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.