Superhero Support Fund

Spiderman CheckYesterday, Rheumatoid Arthritis Guy wrote about some of the more “negative” aspects of living with rheumatoid arthritis – and how these could be thought of in a positive manner. Living with rheumatoid arthritis has taught me a lot, and I am actually eager to see how much it will continue to teach me in the future.

There was one item that I left off yesterday’s list, though. For some people, this aspect of living with rheumatoid arthritis may never appear on their radar. For others, this aspect of living with rheumatoid arthritis often seems to be center stage. I am part of the latter group.

And to topic which I left of yesterday’s list, but which I will discuss today: financial difficulties.

Being unemployed is a big challenge in an of itself; being unemployed while my health care costs continue to sky rocket is an even greater challenge. And while it is a challenge that ultimately needs to be resolved (and will be resolved, I have no doubt), prioritizing my medical expenses – doctor’s visits, lab tests, medicines, physical therapy sessions, etc. – is becoming more and more difficult. (It sure costs a lot to be a superhero, no?)

A few weeks ago, I was struggling quite a bit with this issue. How can I continue to spend so much money on myself (that is, on my health care) when there is no income? Even though I know that I was not doing anything wrong in continuing to prioritize my medical expenses above everything else, there was still a certain level of guilt that I carried within myself for doing so.

Luckily, during the past month, I have found a sense of peace when it comes to my financial situation. Are my problems resolved? No. How long will our money last? I do now know. But I continue to do what is necessary in order to take care of my health, and I continue to do everything possible in order to follow any job lead big or small that comes my way.

What is the positive aspect of my current situation? It allows me to focus on what is important, and it allows me to appreciate every dollar that passes through my hands. It allows me to spend less time shopping – instead, I can enjoy and appreciate the things that I have already surrounded myself with. It forces me to be more creative when it comes to getting more bang for the buck, and it teaches me to waste less. In the past when money flowed freely I did not necessarily have to pay attention to these details…but learning them now can only continue to help me in the future.

Just a few months ago I learned the importance of asking for physical and emotional help, when it is necessary to do so. Currently, I am learning the importance of asking for financial help, when it is necessary to do so. I now find myself in this situation.

So today I am launching Rheumatoid Arthritis Guy’s Superhero Support Fund! If you enjoy this blog and would like to provide a small token of support, I would be very grateful. A Donate Now! link has been added to the sidebar here on my blog. All donations will be processed safely and securely through PayPal.

I have a lot of visions for this blog, and I have a lot of visions for my personal health. Right now I am doing everything that is within my control, but the financial aspect continues to remain outside of my grasp. I continue to stay optimistic.

Rather than passing the hours worrying and pulling out my hair (which is already falling out by itself!), I would much rather continue to move forward, and to do everything that I can. I would much rather continue to take care of my health care needs. I would much rather continue to help this community grow. I would much rather continue to raise awareness of rheumatoid arthritis.

There are a lot of unknowns…but as long as I am facing the right direction, I know that everything will be okay.

I appreciate your readership, and I appreciate any support you might be able to provide.

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

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Living With Rheumatoid Arthritis: Navigating the Medical System

Through all of this I’ve learned that I have to be my own best advocate. This means taking time out of my busy day not only for doc appointments but to make phone calls between the various providers and organizations. Sometimes I feel like a pest…call the pharmacy to check, call the doctor’s office to check, leave a message with the busy nurse, call back, request a fax, call the next week to check on the status of the prescription, check with the insurance company, repeat information multiple times, check the status of a shipment through the parcel company, fill out a form for copay assistance, and the list goes on. As much as the people show care and compassion, they don’t have the time and/or personal interest to always go to bat for me. So, in addition to fighting RA, I find that I have to expend energy navigating the multiple layers of the medical system. I don’t have solutions but am keenly interested in the debate around national healthcare for the first time in my life.

Read More: http://livingwithra.wordpress.com/2009/10/04/navigating-the-medical-system/.

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RA (Super)Heroes

On Wednesday I had an English class, we talked about hero and we were asked to write about this subject, images of many people kept on passing my mind, I thought who would I rather write about! I thought about my mom, dad, RA Guy *embarrassed*.

Part of me wanted to write about ME, I really felt like a hero when the instructor was discussing the qualities of a hero, I have mixed feelings about saying that RA made me a hero, sad, embarrassed, sarcastic; but when I think about it I find that it’s a matter of choice…

Read More: http://raprincess.blogspot.com/2009/10/heros.html.

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Milestones

MilestoneRheumatoid Arthritis Guy, during his more difficult periods of living with rheumatoid arthritis, is often surprised by the comments and messages her receives from people who thank him for the optimistic attitude of living with RA that he shares here on this blog. Sometimes, when my challenges are big, I do not always recognize that sense of positive thinking and optimism within myself…so it is nice to be reminded by others that they are indeed present and visible.

When I am going through a particularly difficult flare, my cone of focus becomes just a tad bit smaller. World news events are forgotten…which is sometimes a good thing because they can be so depressing at times. Being the eternal optimist, I recognize the good that results from my moments of mental fog, of forgetfulness, and of feeling that once again I am walking on the rim of the canyon that hovers above deep depression. What is the good result of the above items that are often considered to be elements that should remain outside of our lives? For me, these periods force me to turn inwards, to get to know myself a little better.

To use this most recent occurrence of pain and disability to move myself one step forward towards a better place, despite the fact that my body seems to be moving towards a worse place – if I continue to implement this as one of my guiding principles, I feel full of hope, ready to deal with any problem that life presents to me or with any disability that my body presents to me.

I have noticed that after dealing with a flare for a couple of weeks – normally around the time when in the past I used to feel like throwing in the towel and losing hope – I now feel the exact opposite. I feel like a wind (I don’t know where it comes from, to be honest) fills my sails and propels me forward to a place that I may not yet understand, but which I know is a positive and healing place for me at this point of my life. Normally, the first burst forward involves my emotions and my mental state of being, and then is followed by a similar burst forward in my physical condition.

This past weekend, I had that first burst – and a little bit of the second burst. Instead of filling my mind with thoughts such as “how long will this last?” or “I hope my excruciating pain does not come back”, I instead decided to use my clear mind to think about what I have just gone though once again, about what I have learned, and how I can take that next step forward which will help me next time I undoubtedly go through another rough period.

I found myself creating a list…a list of aspects of living with rheumatoid arthritis that are usually (at least for me) regarded as some of the most negative aspects of living with RA. Knowing that I have experienced them many times in the past, and that I will experience those many more times in the future, I thought it would be fun to see what positive and optimistic – yet realistic – spin I could place on these “challenges”.

So here goes…

The Unpredictability of Living with RA

Right now I am doing so-so, later this afternoon my wrist might be in so much pain that I can barely move it. Tomorrow I will have difficulty getting out of bed. The day after I will jump out of bed with no problems, right before the sun comes up.

One of the aspects of living with RA that has been most difficult for me to accept has been the unpredictability that arises when living with this chronic condition. Sometimes I feel like I should not make plans for the coming day or for the coming week, because I don’t know how I will feel once that moment arrives. Other times, I wish that I could just have all of my bad days grouped together and all of my good days grouped together…that way if I have a good morning, I will not start feeding myself thoughts of delusion such as “ahhh, the worst is over – finally!”

It’s a roller coaster ride, definitely…but the more I think about it, I have never had much of an aversion to the rote or to the mundane. The same things day in and day out…that’s sort of boring to me. I resigned from my corporate job when I was 29, after deciding that I wanted more adventure in my 30’s. The morning commute…sitting at a desk…attending meetings…emails…reports…deciding where to lunch…afternoon commute…and so on just did not sync with the person who I thought I was. Sure, the leap away from a high-paying job with good benefits was a little scary, but looking back I would not have done anything different.

So living with rheumatoid arthritis definitely brings a lot of uncertainty into my life, – but with it, it also brings adventure. So if I frame this as an adventure in which I am constantly learning, while never knowing what lies around the corner, I think I will begin to cope more easily with the continual up-and-down rollercoaster ride that living with rheumatoid arthritis seems to be. And in a way, this adventurous aspect of my illness certainly fits in nicely with the individual I have become during the last six years since living my corporate job.

The Oh-So Excruciating Pain

Okay, here’s a good one. The pain that sends constant messages of “don’t move” to my mind, the pain that clouds my emotions and makes me feel on edge, the pain that sometimes feels like it will NEVER get better much less go away.  What good can possibly come out of living with this type of pain?

First of all, living with this pain has taught me to learn to listen to my body. My body is sometime that I should respect at all times, and it not something that I should push around past its limits. While I was in college and early on in my professional career, my norm was to push my body hard…but all in the wrong way. I was not pushing it to exercise, or to explore a new diet, or to learn the benefits of rest and downtime. Instead, I was pushing it to produce…and produce…and produce even more (rest could always come later).

Having lived with chronic pain for years now, I have learned that rest comes now. I have also learned to shed myself of any negative attitude that I had previously associated with rest or down time. Often, the best thing that I can do for myself is to do absolutely nothing. During these moments, I give my body a chance to heal from the constant attack of rheumatoid arthritis. I allow my joints to rest. I allow myself to grow.

And since the pain is ever present, I am slowly learning to not be afraid of it. Instead, I am learning to walk toward it…to get to know it a little better. I am figuring out that while it seems like one monolithic mass hanging over me all the time, it is actually quite nuanced and complex. Oh I know, the thought of getting closer to the pain and not further away is both frightening and contradictory to the way in which I have previously related to it…but since it’s there, and since it’s a part of me – for better or for worse – I will once again take a leap into the unknown.  The more I identify with this pain, the more I incorporate it into my life and accept is as a part of my being, the better off I think I will be.

“This Will Never End”

So be it. Let it remain a process, and not a destination point. All too often, when I am going through a relatively good period where my symptoms are low to non-present, I slip back into my routine of the past: do too much, don’t take care of my diet, start slacking with my meds, don’t allow myself periods of mental rest, lower meditation and other helpful activities on my list of priorities, and so on. I continue to do this, even though the results are often the same. Things go back to the point where they were before I got “better”, or the even get worse. Then, I scold myself for not having yet learned this lesson.

Frequently in the past, the thought of “this will never end” has been one that got my heart-racing just a little bit faster, that pushed me over into an anxiety attack, or that fueled feelings of losing hope. Ask anybody close to me in my life, and they will tell you that I spoke these words often.

I have a right to speak these words I have no doubt…after all, rheumatoid arthritis is a chronic illness for which there is not yet a cure. I will continue to speak these words, as this is the reality of my situation. But rather then invoking them in order to heighten my fear, I will now work on using them as a reminder: a reminder that I need to continually take care of myself. I need to take care of myself not because I live with rheumatoid arthritis, but because this is what is good for me as a person.

And in this way, maybe I will finally learn and listen to the lesson of not overdoing things, no matter how good or how bad I am feeling.

The Dark Tunnels

The depression that returns, no matter how many advances I have made in living with rheumatoid arthritis. The fear that comes out of seeming nowhere, that often leaves me in tears. As I have written before, I used to consider these feelings as signs of failure…signs that I am not coping well with my chronic illness.

Well you know what? I now consider these feelings a sign of my success. I am accepting the effect that rheumatoid arthritis has on my body AND on my mind. I now know that these feelings go hand-in-hand with my flare. It doesn’t matter if my last flare was last week or last month or last year, when I go back into a flare I am going to experience many of the same emotions.

I used to think that in order to get better, that I needed to stop experiencing these emotions. I now know that in order to get better, what I need to do is recognize and accept these emotions when they are happening. This allows me to understand these feeling and react to them accordingly. Just as my body gives me signals of the distress it is feeling, so too does my mind. So my journeys through these tunnels have gotten less scary. I have come to accept them as a necessary part of the process of going through flares and living with rheumatoid arthritis…and I know that passing through these tunnels will indeed get me to a better place.

Deformities

Some of my deformities are “temporary”: my right wrist gets so swollen that anyone who looks at it can see that something is out of place. While these types of deformity might appear to be temporary at the moment, I make no pretense of the fact that every occurrence is indeed adding some permanent damage.

Some of my deformities are “permanent”: my pinky fingers on both hands are beginning to curve inwards, while the joints on my toes are visibly drifting from their proper location. When I do warrior pose during my yoga sessions, as I stretch out my arm and allow my gaze to float over the ends of my fingers, I notice that some fingers curve upwards while others curve downwards…sort of like I’m permanently pressing down on a couple of piano keys.

When it comes to accepting my deformities that result from living with rheumatoid arthritis, I have come to accept that the hardest part is not accepting the deformities – temporary or permanent – that are already visible. Instead, it comes from accepting the deformities that might or might not take place in the future.

As it should be hard…it’s hard to accept something that does not yet exist. Recently, I have found myself thinking a lot about what might happen to my body down the road. Much like I am working on changing how I relate to “this will never end” I am also trying to change the way I relate to “what will happen to my body in the future?”

I no longer see this thought as one which provokes fear. Instead, I think of it as a way for preparing myself for something that has a certain probability of entering into my life since I live with RA. I don’t think I am being overly-optimistic (i.e. “I will not have any deformities beyond where I am at the moment”). Neither do I think that I am being overly-pessimistic (i.e. “I will lose the use of my hands and feet and require the use of a wheelchair”). Instead, I think I am preparing myself for whatever might happen. Sure I can’t cross that bridge until I get there…but if I at least start to think about it, hopefully I can be a little more ready to cross whatever hurdles might appear in my path

And in regards to the deformities that I described at the beginning of this section…I can’t say that I have fully accepted them. But, I have made this my goal.

*****

I definitely had a milestone weekend these past few days. These are my feeling at the moment. I look forward to returning to this post during my next flare.

This is my life.

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

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