R.A. Eight Days A Week — Chronic Illness Can be More than a Full-Time Job

Recently, as those who read my column know, I dislocated my prosthetic hip. Because of this, I ended up in the ER for hours on end. Not only that, but I am now going to miss two events that I had previously planned to attend because I am still healing. Having an illness such as Rheumatoid Arthritis truly is a full time job, as I was reminded by one of my friends this week.

 

The amount of work that goes into having a disease can be staggering. There are so many different aspects to keep track of things can easily become overwhelming. I now have to use the calendar on my iPhone to keep track of everything. At the top of the list of considerations are visits to doctors.

 

Frequently, people who are chronically ill have to see more than one doctor. Sure, normal, healthy people see different specialists from time to time, but I see many doctors at once. First, I see a Rheumatologist. He is my main doctor, the one I go to before I see anyone else. In fact, these days I do not even have a GP. My Rheumatologist usually fills in when I have everyday health issues. Seeing him usually requires half of an entire day, and that’s without traffic. Second, I see a nephrologist. For those of you who are not familiar with the term, this is a doctor who deals with hypertension, a.k.a. high blood pressure.  The actual appointment doesn’t take very long, but sometimes I will sit in the waiting room for hours. My third doctor is my pain specialist. He is responsible for keeping my pain at a low enough level for me to be able to live somewhat of a life. Since his office is in Manhattan, though, it can eat up an entire day going to see him. When those three doctors have been seen, I still have an ophthalmologist to visit. He keeps tabs on my right eye, since I suffer from a retinal vein occlusion (partial sight loss). Those eye doctor visits take hours because my eye has to be dilated in order to make it easier to see inside the pupil. In addition to all that, I see a podiatrist every Monday. It only takes an hour or so, but it has been a weekly occurrence since the beginning of 2011. Finally, two days a week I see a physical therapist. Two hours per visit, it takes up the afternoon on both Monday and Friday.

 

As you can see from my long list of doctors and professionals, simply making the appointments and taking the time to travel to and from can fill my month with days of unavailability. If that was the only thing that went along with having a disease like R.A., I’d consider myself lucky. Unfortunately, there is another aspect that makes my free time a rare commodity – prescriptions.

 

Many of you are probably saying “filling prescriptions? How can that be hard?” Well, it is not exactly a five-minute affair when you have to keep track of and fill scripts for nine medications, several of which are controlled substances. My blood pressure pills and my rheumatoid pills are the easiest to fill. I simply need to call the pharmacy and ask for a refill, and they will ready the medications for me. I still have to go and pick them up, of course. Obtaining my pain medicine is a bit more difficult. In New York, controlled medication prescriptions can only be written for a 30-day supply, and refills are not allowed. That means that every single month, I have to obtain new scripts for the meds, and fill them. Since my pain management doctor requires an actual visit to dispense prescriptions, it means a monthly appointment and a day spent in New York City. This is followed by a drive directly to my local pharmacy to wait for the meds to be filled. Sometimes the CVS will not have the medication I need on hand, and I will have to wait for them to order it.  It can take three days until the proper pills are in stock. Finally, I have my daily Kineret injection. This medicine comes in boxes with seven pre-filled syringes. To obtain the Kineret, I have to get my insurance company to fax my doctor a form that he must complete. Once he completes the form and faxes it back to the insurance company, they have to call me in order to set up delivery. This involves a 20 to 30 minute phone call in which I go over all the delivery information (yet again), and make sure they have the correct address. If I miss this phone call, I have to wait until they call back. In addition, since my medicine must be kept cold, it is important I receive the delivery the first time it comes or the dry ice will evaporate. When I do eventually receive and open the package, it takes me an hour to unpack and refrigerate the loose syringes. Finally, if I fill my sharps container with used needles, I have to spend an hour driving to a hospital where I can drop off the used syringes to be destroyed.  Obtaining my medication alone has resulted in days of work for me.

 

One other thing to consider is that it is entirely possible I can be out of commission for days at a time due to my R.A. This cuts down on the time I have to complete the tasks I have outlined above. I may only have 20 days in a given month where I am healthy enough to get up and get going, which means I have to cram everything I have to do into those 20 days – disease related or not.

 

As you can see, visiting my doctors and obtaining my medication alone takes a significant amount of time. There are many burdens that my disease hefts onto me, and there are many everyday tasks that require extra time to complete because of the illness. Many healthy individuals don’t realize just how much “work” having a chronic illness can be, especially when the disease itself interferes with the normal operation of the body. Having a disease is indeed a full time job, and there are no coffee breaks in real life.

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