#HAWMC Day 27 5 Challenges. 5 Small Victories.

5 Challenges. 5 Small Victories. Make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going. When you are Chronically Awesome, every day is filled with challenges and victories. The things I find as challenges may be, to you somewhat simple. What I see as a victory may be an ordinary event. Not always. Sometimes I pull off some pretty amazing stuff, things that even a totally well woman can't pull off. Just because my body is broken, and I have parts of my mind that are different than yours, doesn't mean that I cannot do some pretty fantastic things. I think I prove that all of the time.

5 Challenges. 5 Small Victories. Make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going.

When you are Chronically Awesome, every day is filled with challenges and victories. The things I find as challenges may be, to you somewhat simple. What I see as a victory may be an ordinary event. Not always. Sometimes I pull off some pretty amazing stuff, things that even a totally well woman can't pull off. Just because my body is broken, and I have parts of my mind that are different than yours, doesn't mean that I cannot do some pretty fantastic things. I think I prove that all of the time.

I don't want to waste anyone's time with "challenges" that only further draw attention to the chronic in my life. If my greatest challenge in the day is making my bed, and we are going to go over the old story that it requires too much energy to make my bed, guess what? That is just too much chronic talk for me. Do I really need to make my bed every day? Hell no. If I am so sick that making my bed is going to be the trade-off over bathing or making my family a meal, I have some other problems to consider. That and my priorities are screwed up. I can skip making my bed..

That being said, let's talk about some real challenges.  Challenges of my total health focus. Let's talk about victories. Things that make my life and my world OVERALL, BETTER.


Challenges Well this was harder than I thought. Five whole challenges? At first I thought I would burn this list up, but obviously if I find myself back here to frontload my list, I had trouble. The first three were easy breezy. It was the last two. I don''t know if that is because it was hard to come up with that many or because I am exhausted at 1:08 AM... long day. Long week. 

Getting Diagnosed: For a lot of people, accepting their diagnosis is a challenge. For me, a huge challenge was getting diagnosed. This isn't a unique story for those with autoimmune disorders. Getting diagnosed can take so long that the disorder can do terrible damage to the body in the wait. For me, this challenge continues even now. It's been 25 years since I was diagnosed with Bipolar disorder. I was diagnosed hypothyroid 19 years ago. Then there was my lupus, fibro, and peripheral neuropathy diagnoses beginning around 2006. Theoretically, I was set on a course that was supposed to manage what was going on. My pain and the health issues related to these conditions should have been managed with the therapies provided by pain management, rheumatology, PT, and other specialists I had assigned to my care. That however is another challenge. The final challenge, I hope, in my diagnosis came just last week. On Tuesday, April 24th, 2012. When I saw my new Rheumatologist, it was clear to him that I presented with EDS. I have so many visual characteristics that it wasn't really a major shock. We are waiting on blood work to type the rest of the diagnosis. So, you can see that getting diagnosed for me has been a major challenge.

Pain Management: There are several challenges with pain management. Many of them are universal. I am just going to speak of my own. I have had some unique and annoying problems with pain management. I think my first major problem with pain management has been the issue I speak about in challenge one. I was missing a key diagnosis, one that causes a good deal of pain. When you are not being treated for the sum total of your pain disorders, it's pretty hard to really manage your pain. When I finally got to see a fantastic pain management doctor that would treat me for pain, and not treat me like I am crazy, or like an addict (or potential addict), he was taken away from me by an overzealous ER doctor with some sort of totally fucked up sense of "helping me". Merrily I was rolling along, my pain managed. I was working full time and functioning. Then I had some kidney pain. An ER doc convinced my husband that he could not treat my pain and kidney issues until I went to a drug rehab to be detoxed. Like a real drug rehab with heroin dealers and real housewives of the OC. This situation, this mess and nonsense kept me from doctors (for the most part) for 2 1/2 years. My pain management for that time has been haphazard at best.

Losing My Job:  Call it a layoff, call it early retirement, maybe I was forced into owning my own business. WHATEVER. The thing is that I lost my job after working for the same company for 15 years. I started at the company as a software helpdesk tech. I left as Vice President of Marketing. I don't even know how else to describe this challenge. Where do you start again after this? Not to mention that I was sick and that job was really the only reason I was getting up in the morning. My job was my identity. Too much so.

Family Support: I would like to feel that I have the full support of my family. I know this much: my family doesn't want to hear another word about lupus. I have been working to build a community, which happens to be based on the chronic illnesses of so many people. That means that I talk about illness a lot, and yes I have a few of those myself. So, when I talk about this stuff, I am kind of talking about my job. When you ask me how I am, you are asking me also about my life's work and passion.

Agoraphobia: I love being in my house, with my dogs, and my computers. In my house is food I can eat, my medications, my bathtub, my bed. Attached to my house is a fenced in garden patio. I have orchids I carefully raised, 15 or so of them. They are cymbidium. Why would I leave? Ok fine, I acknowledge that there are times I have to leave. There are things that have to be done, and there are great rewards to doing certain things outside of the house. Ugh.


 5 Small Victories

Coming up with victories is easy for me. I see victory in so many things. I am not one of those overly positive people that can find a silver lining in EVERYTHING. What I am talking about for victory can be as simple as how hard I laugh when I fall on my ass. (as long as I haven't broken anything). Laughing at myself when I may have otherwise been embarrassed is a victory. I mean really, it also gives me a chance to say "Nailed the dismount!"

Finding A Doctor: This isn't even a small victory. After a few years of letting my Primary Care Physician manage what is, obviously a complex care situation, everything fell into place and not only did I get a doctor... VICTORY!

Pain Management: So, about that new doctor. Not only did he resolve getting me back on track for pain management, but he diagnosed me with EDS. That means that I had other reasons for pain, different kinds of pain. I required some better pain management. VICTORY!

Social Interaction: This is not just agoraphobia, but my fear of the telephone, asking for help in a grocery store or department store ... the list goes on. I have so much fear. Well, I have been talking so much on the phone of late, that I am pretty sure my husband is annoyed.  I try to leave the house once per day. That has not been so great but, I have been doing huge things like spending the day in LA or going out to lunch with girlfirnds. I used to not even like having women as friends. And, for the first time, in 10 years, I got the mail.

My Path: I have been working toward something, I have not been exactly sure what it is but I know I have been tweeting and blogging. I have been building something, and sharing it with others in activist chats. Along the way, I have met and fallen madly in love with a community of people, and they are Chronically Awesome.  The reason this is a small victory is that we are only a small way down the path. I keep lookng down and trying to see to the end, to see what is coming... all I know for sure is that it isn't and oncoming train.

My Family: I got an email from my mom about a week ago; she had run into someone at a function for the brewery. This person told my mom about some troubles she was having. She has some Chronically Awesome things going on, and really needed some help. My mom proceeded to tell her what Chronically Awesome is and what I do with the blog and on twitter and Facebook. She explained that I am also Chronically Awesome. My mom emailed me the woman's information, and we were in contact. Sure, a new member of our Chronically Awesome family is a victory, but that is not the victory I am talking about here. My mother acknowledged to someone she hardly knew, not only that her daughter was this sick person, but that she was a health activist on the internet talking about illness all the time. That is a Chronically Awesome Victory.

 

 

Jules Shapiro

wtj

@julianna12369 || 

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