Palmetto Infusion Services

I’d like to send a very special thanks to Palmetto Infusion Services for purchasing 25 copies of Rheumatoid Arthritis Guy’s “Hope! Unlimited” travel mug. This bulk purchase will not only aid in raising awareness of rheumatoid arthritis, but it will also help to remind some patients that they should never lose hope!

PalmettoPalmetto Infusion Services was founded in South Carolina in order to provide patients living with Chronic Diseases like MS, RA, Crohn’s Disease, Colitis, Lupus, CDIP, and many others a safe, convenient, and more affordable place to receive treatments that improves the quality life. Palmetto Infusion Services help people LIVE more and ENJOY more that LIVING has to offer. Our centers are places where patents receive specialty drugs and personalized care from infusion trained registered nurses, pharmacists, dietitians, physicians, and other nurturing and caring team members. We continuously and relentlessly search and investigate cutting edge treatments for patents with chronic conditions. We also exhaust every effort to make our centers the most efficient and cost effective site for patients. Drugs are very expensive and we fight for our patients to get the best drug for the cheapest price possible.

Read More: http://www.palmettoinfusion.com/

If you’re interested in purchasing your own “Hope! Unlimited” mug, you may do so from my Zazzle store. This mug is available in a ceramic version and in a travel version.

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Avoid The RA Emotional Roller Coaster

An optimistic attitude may help ease the physical pain of rheumatoid arthritis. Follow these steps for staying upbeat.

A diagnosis of rheumatoid arthritis means that you’ll likely be dealing with pain for most of your life — and that can take a toll on your emotional health. Studies have found, however, that learning to regulate your mood can help ease your pain. Here are some steps to help you stay upbeat.

Read More: http://www.everydayhealth.com/rheumatoid-arthritis/avoid…

An optimistic attitude won’t necessarily make your pain go away, but it will certainly make it a little bit easier to cope with the challenges of living with chronic illness. The steps mentioned in the above article are great ones.

I posted a Facebook Question this weekend, in which I asked people to vote on their favorite strategies for coping with RA. It is nice to see that after Traditional Medications, the most commonly used coping strategies are Support (blogs, online groups, social media, support meetings, etc.), Distraction (entertainments, hobbies, socializing, etc.) and Laughter.

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More Autoimmune & Rheumatoid Arthritis Blogs!

A Fierce Sunshine
I’m a 32 year old woman, diagnosed with rheumatoid arthritis in 2011. I’m exuberant, empathetic, often ridiculous, and absolutely passionate. Not all journeys begin expectedly. This blog shares some of mine, beginning with Loss. To the newly diagnosed: there is a light.
Read More: http://afiercesunshine.blogspot.com/

Juvey Chick
Hey everyone! My name is Natalie and I’m 25. Big lover of all things pink, fluffy and cute. Quirky, bit mad….but loveable! My life tends to be dictated by my illness, but I have learned how to cope, keep smiling & make the best of everything……here is my ‘brief’ story. I was diagnosed with Juvenile Chronic Arthritis at age 5, nowadays theyre calling it Juvenile Idiopathic Arthritis. It has stayed with me despite doctors hoping it would ‘burn out’.
Read More: http://juveychicks.blogspot.com/

Penny’s Points
Life with me, my family and my cat and my disability. Serious at times, light hearted at others, my opinions and outlook on life in general.
Read More:
http://pennymead.blogspot.com/

Rannygahoots
People ask me what life is like living with Psoriatic Arthritis (PsA). I’ve tried many ways of explaining it that just don’t do it justice. The easiest way I can explain it is as follows…
Read More: http://rannygahoots.blogspot.com/

Meanyjar
I like writing about what I make, so here I am, I am also a Mummy to two lovely girlies. I love sewing and am now dabbling in crochet which I have fallen in love with. I don’t really know what I am talking about and will probably adopt my own terminology which I will explain in a very ‘me’ kind of way – randomish! Hope you enjoy!
Read More: http://meanyjar.blogspot.com/p/arthritis-journey.html

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Autoimmune Wellness Center

When you live with a chronic illness like rheumatoid arthritis, going to all of your different health care appointments can easily feel like a full time job. And to make the situation even more complicated, everything is usually in a different place. You have to go one place to see your rheumatologist, another place to get physical therapy, another place to exercise, another place to get your lab work done, another place to see your psychologist, and so on, and so on.

As I commute from one place to another day after day, I often start to daydream. Wouldn’t it be nice to have all of these services in one place? After all, many of the biggest challenges that I encounter on a daily basis are often related to mobility issues.  And, if I’m going to have to spend the rest of my life continually getting the health care that I need, wouldn’t it be nice to do so in an environment that places more emphasis on the “care” part and less emphasis on the “medical” part?

The result would be sort of like an integrated health spa, a wellness center. This concept is not completely new, as it has already been applied to some children’s health centers, cancer treatment centers, assisted living centers, and outpatient services such as dialysis and infusions. Even though the needs of those of us who live with autoimmune disorders cover a wide expanse, wouldn’t it be wonderful to have such a place of our own? A place where a complete support team has already been established, where patients can choose from the wide range of different services that are available.

Background

This is not the first time I have explored this idea. When I was in grad school, my thesis project was actually the design of a museum of prosthetic devices and mobility devices. I wanted to research the concepts of accessible/universal design, body augmentation, and physical movement. (Trust me, I had absolutely no idea how personal these issues would become just a few short years later, when RA entered my life.) I wanted to study the differences between a) buildings that incorporate ramps and other accessible elements into the actual design and primary circulation paths, and b) buildings that met accessibility requirements by merely adding a ramp to the rear entrance or off to the side. I wanted to learn as much as possible about Universal Design.

Design Inspiration

Shadow puppetry really fascinates me. Over the past decade, I have gone from seeing some of the most amazing shows ever that combine both human actors and puppet actors, to working with some digital shadow puppetry myself (as shown below.) I think there is something really exciting about being able to see something that you cannot actually see. You can see the shadow, but you can’t see the puppet…but in a way, you can see the puppet. Some shadow puppets are works of art in and of themselves, such as the ones from the country of Bali. Some shadow puppets are jointed; you can see tiny metal circles that mark the place where two limbs meet. The emphasis on movement–the beauty of these flat shapes coming alive as they float around the screen, is what I think makes me most interested in shadow theater.

RAGuy_ShadowPuppet
Previous experiments with digital shadow puppetry.

What’s Included?

  • Floor 1: The “Waiting Room” Cafe – This is probably one of the aspects I would enjoy the most about such a center. A double-height, well lit space on the ground level which includes a coffee shop and lots of comfortable seating. You can drop by and meet a friend, or you could actually be waiting for an appointment in one of the many offices located in the building. Don’t suffer anymore through long waits in  boring, stuffy waiting rooms. Have a coffee or a glass of fresh-squeezed juice instead, while you read the latest news. How will you know when your doctor is ready for you? Simple. You’d receive a text message a few minutes ahead of time, asking you to please proceed to the appropriate office.
  • Floor 2: Advocacy Center – Meet a social worker, help raise awareness about the need to increase research funds, or join with others to advocate for laws which protect the rights of those living with autoimmune disorders and other disabilities.
  • Floor 3: Arts and Culture – Exhibit and performance spaces for artists and musicians in the autoimmune community, including a library of books, magazines, and other media items related to disability.
  • Floor 4: Therapy and Support – Attend your weekly session with your psychologist, or attend one of the many support groups that is held at this wellness center.
  • Floor 5: Body & Mind Spa – Massage therapy, Reiki therapy, Acupuncture, and so on. If you’re not familiar with some of these “alternative” therapies, stop on by and see what they are all about!
  • Floor 6: Medical Support Services – Do you need to get your blood drawn, have an X-ray or MRI taken, or get your monthly infusion? All of these services, and more, are conveniently located here.
  • Floor 7: Children’s Medical Center – Rheumatologists and other medical professionals dedicated especially to the care and treatment of young superheroes.
  • Floor 8: Adult’s Medical Center – Rheumatologists and other medical professionals dedicated especially to the care and treatment of adult superheroes.
  • Floor 9: The “Gym” – A “traditional” fitness center, but even better. Located on the same floor are physical therapists and occupational therapists. Get some exercise, or do your physical therapy. You might even want to invite your rheumatologist to stop by, so that he/she can see how well you are doing!
  • Floor 10: The “Patio” – All things water. A covered heated swimming pool that can become open-air on particularly nice days. Sauna. Jacuzzi. Hydrotherapy. This deck could even play host to Friday afternoon happy hours (with non-alcoholic options as well, of course.) Just like the chic sky pool bars in Los Angeles…but even more “exclusive”!

The “Ramp”

Along the lines of universal design, I’ve always wondered what it would be like to have a mid-rise building whose focal piece was a vertical circulation system that was comprised completely of accessible ramps. After tossing around ideas in my head for more that a year, I decided that it was time to finally put (digital) pen to paper. And what better place to incorporate this concept than an Autoimmune Wellness Center? There would still be the usual elevators and stairs, but I wanted to put such a ramp front and center.

Because then, the facade becomes all about movement. Movement of a person who is in a physical therapy session and who is actually walking up or down a ramp. Movement of a person who is walking between appointments, and who is motivated to take this “scenic route” instead of the elevator or the stairs. Movement of a medical person who is running down two floors to get a latest copy of a patient’s lab reports. Movement of a visitor who after drinking a coffee in the “waiting room” cafe, decides to walk up to the exhibit space on the third floor. Movement of all types.

All of the ramps are double-width. There will be no more backing up or waiting for someone else to pass, as there’s room for everyone. The landing on the end are more than just landings; they also serve as places to meet and talk. These spaces include wooden benches that can be used if you want to stop and rest, benches that do not interfere with the normal circulation that is taking place. If you want, you can just take a moment to meditate and clear your mind, while looking out over the surrounding city. Or, you can sit in the sun and read a book, as you wait for your next appointment.

RAGuy_Concept_WellnessCenterRamp

The Theater of Movement

With the placement of clear, frosted, and illuminated walls of glass, movement within this space would become even more theatrical, even more beautiful, than it already is. This building is constantly animated by the three-dimensional and two-dimensional visual images of the people who are using the space. Our bodies might be seen as a shadow on the stage, or as a silhouette against the wall. And in those occasional moments when our selves become flat projections, just like the human actors in shadow puppet theater, the boundaries between our bodies and our crutches, canes, and wheelchairs will no longer be visible.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

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Don’t Lose Hope!

Hope StarToday’s post discusses the sensitive yet important topics of depression and suicide. I have received suicide letters here in the past both as emails and blog comments (never published of course), and my hope is that by sharing my own personal story, I might be able to help others who are struggling with these issues themselves.

While I was still living in San Francisco many years ago, my friend (who was also my landlord) was diagnosed with leukemia. Due to his age and his rapidly deteriorating condition, doctors advised against chemotherapy treatment, and recommended that he instead try to enjoy his final few weeks as much as possible. I was between jobs at the time, so I took advantage of the fact that I was home more than usual, and made a point of going upstairs each day to visit him. I intended my visits to not be too long, but they always turned into hours-long events. Day by day, my friend recounted his entire life to me, as I sat next to his bed. Eventually, he was transferred back to the hospital. I made it a point to visit at 6:00 am each morning so that he could wake up with the daily newspaper, just as he did at home.

One of his main concerns at the time was about who was going to take care of Oliver, a 14 year old service dog that he had just adopted himself less than a year earlier. (Oliver’s lifelong owner had recently passed away.) I knew that he was hoping that I would offer to take the dog; I also knew that he would not ask as much directly. For me, the hesitancy was a result of having adopted a puppy from a rescue shelter just a couple of weeks earlier. My one dog family (Lily, who I said goodbye to this past weekend) had just grown to a two dog family (Alva, now my oldest)…and now we were seriously considering jumping up to a three dog family! After some talk at home, we decided that we would indeed take care of Oliver. When I told my friend/landlord, he was delighted. One of his biggest unresolved problems had been fixed, and he could relax just a little bit more, all things considered.

I write all of this because five years ago today, Oliver passed away somewhat unexpectedly (although not too unexpectedly, since he was 16 years old.) I was as close to him as you might be to a senior dog that you’ve only known for a couple of years…maybe even a little moreso, when I took into consideration all of the traumatic losses this caregiving dog experienced during his final years. And while he wasn’t in my life too long, I was absolutely devastated by his loss. Which gets me to the topic of today’s post.

Depression.

Five years ago I was extremely depressed, and the loss of Oliver didn’t seem to help any. Less than a month earlier, I had (finally!) been diagnosed with rheumatoid arthritis, after a multi-year trek from doctor to doctor in which I was trying to figure out what was wrong with me. (I still remember saying, on multiple occasions, that “nothing was supposed to hurt this much.”) A little about my struggle to figure out what was wrong: during my last doctor’s visit in San Franciso, I mentioned that I thought I might have arthritis. I was told that if I had arthritis, that there was nothing that they could do for me. To this day I’m still dumbfounded at having ever received such a response. Back to my period of diagnosis, though, five years ago. On top of the incredible pain, my knee muscles had almost completely atrophied. My physical therapist was encouraging me to walk at least 15 minutes a day…not too much, but something–anything–in the hopes of reactivating my legs. I was in my early 30’s and I had to learn how to walk again? I was definitely down.

And as my physical condition continued to spiral into what seemed like oblivion, so did my emotional state. The pain! Ah, the pain that to this day sometimes is too strong to even comprehend. During my early flares, I used to have visions of a poisonous snake biting me, over and over and over again. For me, the only solution to my problems seemed to be a head transplant. Silly, I know, but that’s what I actually used to think about for hours on end…how could I possibly exchange my current body for a healthy one. (Obviously this probably wasn’t the most healthy thing to be thinking of at the time, but back them it seemed to be my one and only out.)

As days turned into months, and months turned into years, I began to realize that I was not living in some science-fiction novel. This was my body, and I couldn’t change it for another one. (I still remember that afternoon when my physical therapist tried to talk a little sense into my by telling me as much.) Cue the continually repeating stages of acceptance and denial. Things didn’t seem to get better; instead, my life became even more challenging. Not only did the methotrexate not work, but its side-effects were too much for me to bear. (I was tethered to the toilet for six and a half days a week…and as soon as my stomach got better, it was time for the next dose!) My rheumatologist ignored my pleas to change medications. “Your dose is so low, you can’t possibly be having such a strong reaction.” I figured it was time to look for help beyond my medical doctor.

I found a psychiatrist. I wasn’t too happy with his services, but I decided I was going to just focus in on the part that was helping me, as my options were very limited. (In the country where I currently reside, ‘mental’ health continues to be behind the times, especially when compared to most other countries.) I gathered my strength. I made the decision to take myself off the methotrexate, which was immediately followed by another decision to look for new rheumatologist. But then a funny thing happened – I went into remission, for almost an entire year! It was more than I could have ever hoped for. It even allowed me to write off everything that happened during the past few years as just one big bad memory. (Again, looking back, this was probably not the best reaction I could have had.)

We all know what happened next, though. My rheumatoid arthritis returned. I was completely unprepared…both physically and emotionally. My downward spiral continued, and I was reaching lows that I never knew existed. The pain increased. The depression increased. It was all just too much to handle. And this is supposed to be for life??? I often thought to myself. This is when I started thinking about a new out: suicide. (I was shocked that I was even contemplating such a thing…but for a while, it was all I could think about.) I was scared to acknowledge to myself that such thoughts were entering my mind, and I didn’t know how to reach out for help.

My thoughts gradually started moving from the general (should I commit suicide?) to the specific (how should I commit suicide?) My medicine bottles started talking to me. Or so I thought, but by that point there was so little about my life that was clear to me. The constant pain was wearing down not only my body, but also my mind. The medicine bottles on my nightstand were telling me that they had the solution that I was looking for. All that I had to do was swallow their contents. All of their contents.

And this was when my internal alarm bells really started to sound. As much as this seemed like the perfect solution to my problems at the time, I knew that there had to be something else. There had to be some other way to fix what I was going through.

I asked my partner to please hide all of my medicines, and to only give me doses as I needed them. I spoke with my sister about the thoughts that were in my head (she is a psychologist). Little by little, I started to realize that I needed to turn my path around, and find a better solution. I needed to get all of the help that I needed. Even though the task seemed to lie somewhere between very daunting and practically impossible, I made this my new goal. I knew that I probably wasn’t going to get out of the hole anytime soon, but that I had to start making the effort to do so. I had to start moving in the right direction, one day at a time.

First on my list was building a new support team of trained physical and mental health professionals. I was going to establish a support team that was right just for me. I needed (and found) a rheumatologist who was just right for me. I needed (and found) a psychologist who was right just for me. I needed (and found) a physical therapist who was right just for me. In addition, I realized that I also to include some family members and friends, those who I knew would provide me just the support and understanding that I needed. I couldn’t do this alone; I had to ask for help.

And to make a long story short…well, readers of my blog know where I am at the moment. Even though my rheumatoid arthritis continues to progress, I have figured out not only how to accept its presence in my life, but I’ve also managed to reach new emotional highs on a regular basis. The journey from “then” to “now” wasn’t easy, and it definitely wasn’t quick. But it certainly was possible. It absolutely was achievable.

This change from depressed pessimism to realistic optimism could, and has become, my new reality.

During the past few years in which I’ve been blogging, I’ve often hinted at a lot of this, but I’ve never discussed it so openly. So much of this happened before I ever started blogging, which might lead some people to believe that I’ve always been as successful at coping with the pain and disability as I currently am. But I wanted to share this today, because I know there are many other people living with RA who find themselves in the same place where I was myself, just a few short years ago.

I know, I know. It can feel like things will never change. It can feel like things will never get better. But if you make the decision today to work towards new goals of acceptance and happiness, you will begin to see positive results in the coming days and weeks; results that will only continue to grow stronger in the coming months and years.

And as I continue to face challenges in the present, from my most recent (almost completely disabling) flare, to having to say goodbye to my dog Lily this past weekend, I am certainly not going to say that dealing with these challenges is easy…but I will say that approaching them from a position of emotional strength and stability does make a world of a difference. It is this confidence, this ability to learn what is and what is not in my control, that allows me to continue to move forward, more that I could have ever previously thought was possible.

If you are depressed or if you are contemplating suicide, please reach out for help. Speak with a friend. Speak with a family member. Speak with a suicide support line. Speak with a doctor. Speak with a therapist. Speak with a psychologist. Speak with someone online. Don’t feel ashamed, and please know that things can and do get better.

Most importantly, don’t lose hope. Don’t ever lose hope!

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

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