Wednesday, April 24, 2013
Do you like Pinterest? I like looking at everything but it is probably my least favorite form of social media. I started a Pinterest account because of things I wanted to save for later but then I forget about it and forget to "pin" things. The Wego Health Writers Challenge for today is to create a Pinterest Board with a health focus. So, I did. It was actually fun to find related items that might create awareness and educate others. I just haven't figured out how you get everything to line up like I want. If you have any tips on moving the "pins" around and lining things up, please enlighten me. Anyway, here's my Pinterest Board.
Ah, technology . . . where would I be without you? Confused, scared, feeling alone and probably in more pain is where I suspect I would be without technology. Social media and Dr. Google both get a bad rap for many things these days but for learning about and connecting with others with chronic illness, they really are amazing tools.
In the first days of my illness, I had no idea how to cope or what might happen to me. Just one symptom, vertigo, left me feeling completely isolated. I found a group for people with vertigo and suddenly I was no longer alone. The tests were no longer overwhelming or scary. Someone else had already been there before me and had lived. Imagine that!
Next I received the psoriatic arthritis diagnosis. There were so many well meaning people around me who said things like, “you are too young for that,” or “oh, I’m sorry, my family member had that and had to be in a wheelchair or couldn’t use their hands.” Isn’t that is exactly the kind of thing you want to hear when you have just been diagnosed with a chronic illness. And the dozens and dozens of cures people me told to try, well I could probably write a book just about those alone. I might have gone crazy.
Reputable websites helped me sort out those things. Oh sure, there are snake oil salesman on the internet. Like the commercial says with tongue in cheek, “they can’t put anything on the internet that isn’t true.” I keep that in mind and stay away from websites that can be verified. Reputable and verifiable means having a physical building or magazine or network of doctors and people. Maybe other reputable sites that link back to it and use the information or other networks that refer you to the site. If you have heard of the website outside of the internet, then it might be a good one.
Good websites also provide many tools. Medication trackers, allergy trackers and information, medication guides and interactions, pain trackers and guides besides care guides for your condition or illness. They go beyond the standard description of an illness and point you to recipes, coping and connecting with other people like you.
Then we have the simple connecting with others. I can’t even imagine how different my life would have been had I not reached out through the web. I think I would have spent so much more time feeling isolated and very depressed. I made read real connections with real people through groups, message boards and now all kinds of social media. Those connections were more valuable to me than the nurse in my doctor’s office on a daily basis. I have made real friends.
I have a portable TENS unit that I wear to help with pain. All my ostomy supplies are neatly listed online and I can view my previous orders, see new items and get reminders for my next order. I have applications on my smart phone for exercises, notes, health information and medications. We have blood pressure and blood sugar monitors. I have used biologic medications that I injected myself that came in one-time use pre-loaded syringes, no mixing, and no drawing up necessary. We have so much new technology exploding it’s truly incredible. I’m always amazed with what is happening next and yet at the same time disappointed that with all the advancement there hasn’t been more progress for autoimmune diseases and chronic pain. Researchers and biomedical engineers, please keep at it.
Monday, April 22, 2013
You know what one of the greatest things in the world is to be? Normal. To just be an average person living an average life, doing the average things every day is one of the greatest things in the world. Things like getting up every day and getting dressed all by yourself, going to a job or career of your choosing, feeding yourself whatever you like, watching or playing in a ballgame, maybe coaching your kids, maybe just playing in the yard with them, cutting the grass, walking the dog, doing the dishes and yes, even cleaning the house. There is great joy in living an average, normal life.
It doesn’t sound very exciting to aspire to be average, does it? Doing normal things doesn’t sound very inspiring, either. There have been times when I truly could not cook for my family and they had to carry me Gatorade or help me around. Being able to cook a good meal is the most awesome feeling in the world. And, family to help out without complaining when I’m not quite up to it myself is also inspiring.
Every day that I can be average, normal, is truly a gift. It’s a new inspiration. Another opportunity to work, play and choose happiness. And if I can do that in spite of having more than one chronic illness and an ileostomy then can’t everyone? Each day doesn’t turn out like I plan but each day, I try.
For so many people, it is only when they can’t do these normal, average things that they realize just how great that life is really. This is fuel for me. I want to wake people up not only to arthritis, IBD, Celiac Disease and living with an ostomy but also to just how great living a normal, average life really is and what that means. I want everyone to appreciate those days while they are living them not when they are looking back on them. If people living normal, average lives can appreciate their own, then maybe they will cheer for me when I have a normal day. And maybe they will be more understanding when I am not having an average day and need a little extra help.
Sunday, April 21, 2013
“The flower that blooms in adversity is the rarest and most beautiful of all.” – Mulan
If only that were completely true. Have you ever taken a good look at some of the flowers considered most rare? While beauty is subjective, I don’t find some of them to be beautiful at all. In fact, some of them are downright ugly to me. Others are quite delightful to look upon and marvel.
Another quote about adversity reads, “The fire of adversity will melt you like butter or temper you like steel. The choice is yours.” That seems a little harsh, doesn’t it? That we must become like steel when dealing with adversity in our lives.
Living with and being a survivor of any chronic illness is overcoming adversity, day after day. Does it make each of us beautiful or temper us or melt us in the same way? Does it even make one of us beautiful, hard like steel or melt us like butter all the time? I don’t think so. There are too many hills and valleys with chronic illness. We must face each day with new purpose, new resolve and new determination to fight to be well. Some days are really good and we are really beautiful. Some days we can’t help but melt like butter. Each day we need some temper, like steel, but not so much that we are hard-hearted and cold to the world around us.
One of my favorite quotes reads, “I am strong because I am weak. I’m beautiful because I know my flaws. I am fearless because I have been afraid. And, I am happy because I have known true sadness.”
Each of those things applies to my life with chronic illness. And each of the positive is a choice I make over and over again. We each choose how adversity will affect us and whether we bloom or not. I bloom best when I choose strength, courage and happiness.
Friday, April 19, 2013
My mother and I in 2005 both thinking we were too chubby, before she needed a colon resection due to cancer and I had ended up underweight, malnourished and having a colectomy due to ulcerative colitis. Now I think we both look beautiful with healthy hair and great smiles! I no longer see weight, only health as important.
I have on staff, a general medical doctor with nurse practitioner, a rheumatologist, one gastroenterologist, one colorectal surgeon, a neurologist, an ENT/allergist, two gynecologists (I’m complicated since I have an ileostomy) and a host of nurses and lab technicians who assist those people. You know what? I was not meant to be a professional patient! I am the care giver.
I was supposed to go to the doctor, get fixed, and go home. Isn’t that the way it works? You get a prescription for 7 to 10 days and by day 3 or 4 you are better and wondering why you need to take the rest of those pills. There are many, many people with a chronic condition, illness or pain so I know there are a lot of you that can identify with that not working. So, I accepted it when that wasn’t going to work for me and decided to just get on with it. What’s next? When I had one doctor, one diagnosis, one treatment plan, I could go in, get all the information, ask all my questions and come out knowing what I needed to do. But when you have one auto-immune illness you are more likely to be diagnosed with another, like an arthritis and IBD in my case. Multiple doctors, multiple diagnoses, multiple treatments and medications can get confusing. You can begin to feel like you are the professional, like being a patient is your job.
That is not supposed to be me! I’m the caregiver. I don’t say this out of indignation. (Well, okay, maybe there is some indignation there.) This is actually what happens to me when I am in the office in a chair or on the examining table. Doctor, “how are you?” Me, “I’m fine.” What? Did I just say that? Doctor, “how’s your pain?” Me, “okay, I can stand it.” Again, did that just come out of my mouth? I’ve been doubled over! Doctor, “do you need any refills?” Me, “I’m not sure, I don’t think so.” In my head, how could you not be sure?
A visit to the doctor with any member of my family, or any friend is completely different. I am the greatest health advocate they have. I will remember everything they need, have a list of symptoms, a list of question, jot down what needs to be remembered, ask about the medications and side effects, you name it. I have had people ask me to go with them a second time after I have gone with them. I had a doctor ask for me by name to get a health history for a family member in crisis because they knew I would have all the information.
So, what happens when we ourselves get in that chair or on that table that turns our brains into jelly? I’m not intimidated by doctors so that can’t be the problem. In fact, I am very comfortable with mine. Is it just the fact that the whole experience is overwhelming and intimidating? I find that all the things I tell other people to do so they have a good visit with the doctor, I do not do for myself. I just go. I don’t prepare. If I am going with a family member or friend, I prepare. Every time I leave the office, I say next time I’ll be prepared. And next time, I’m not.
I think I need a friend like me who needs an advocate but can advocate for me. If you are in the same place, find someone to go with you. Or hey, give me call, maybe we can trade appointments. At the least, get yourself a notebook. Write down all your medications and all your allergies. You can jot down your questions as you think of them so you will have them in the doctor’s office. And you can make notes before you leave the office of things you need to remember to do. Really, I should take my own advice. But if I do, will I be a professional patient instead of caregiver? Is that why I don’t?