I hear people talk about their “new normal” a lot when it comes to living with a chronic condition. I hate this expression. I understand it, but I still hate it. There is nothing normal about what we go through, living day to day in uncertainty of which ache or pain will slow us down or what symptom will stop us in our tracks.
If it’s new than it’s not normal…it’s new…it’s different than it used to be! I don’t live with a new normal, I live with a changed normal and I don’t happen to like it. Living with a “new normal” has an air of giving in and I’m not willing to give in.
Of course things have changed for me since my diagnosis. I am not the same in a lot of ways but I am also still me, so saying that I am living a “new normal” is like letting go of who I am. I’m not willing to do that either.
Yes, I’ve had to accept limitations. Yes, I have lost parts of me that I miss. I get tired a lot faster. My mind doesn’t work as fast. I forget things. I can’t find the words I want to use. I live in some sort of pain all the time. I get short of breath easily. Yes, I am a modified me but I am still me! I’m still in here, inside this altered body.
Things have changed but this isn’t normal and I won’t say that it is. Maybe they will never be what they used to be. In fact, I know they won’t. But nothing in life is promised to stay the same. Everything changes. So, if everything is always changing aren’t we all always in a state of “new normal.” And, if that’s the case, then I am right to think it is a stupid expression.
I know there have been changes in my life. I can speak to the the fact that I have to do things differently. I can acknowledge that I have to accept these limits in my life now but I won’t ever call them normal and at this point they aren’t really even new as I have been living this way for four years now.
So, have I changed as a result of my sarcoidosis? Yes. Is it normal? No way!
It occurs to me that those of us with chronic conditions have a choice. We can be utterly and completely self involved or we can try learn to be considerate of the fact while we might be the ones with a disease, the people who love us suffer too.
There are times when I think it is easy to forget what the people who love us go through on our behalf and what they put up with because of our limitations. Let’s face it, living with a chronically ill person, is inconvenient to say the least. But for the people who truly love us, it is also worrisome and frustrating. They are powerless too.
So I find it helpful to be mindful of these things and attempt as best that I can, some days better than others, of course, to be a considerate sufferer. I try not to talk about my pain or how hard it is to breath too much. I try to limit my complaints regarding the hardships of my life since my diagnosis. I try to smile and laugh and be present and available in whatever ways I am able for the people who love me.
Sure, sometimes it is hard. Sometimes it is really hard but I do my best to press on and ignore my disease in my day to day life. I want normalcy for the people I love. I may not be able to do as much as I once could but I can strive to press on for them. They deserve the best I have to give. They deserve the best that I have to give because they have sacrificed for me. They have prayed for me. They have supported me. They have worried about me. They have loved me freely.
I want to do what I can to be a considerate sufferer. Now that I don’t work, I try to take care of more things at home than I used to, so my husband doesn’t have to. He’s grown accustom to being taken care of now. At first this annoyed me but now I like it. It means I am achieving my goal of being a considerate sufferer and it is giving me an opportunity to take care of someone who sacrifices for me and suffers with me.
Learning to be a considerate sufferer has been good for me. It is humbling me. It make me think about more than just myself. It allows me a chance to escape my disease because it forces me to think about the needs of others. It actually makes me feel better.
Being a considerate sufferer allows me to focus on what I have instead of what I have lost.
Being a considerate sufferer keeps me from taking the people I love for granted.
Being a considerate sufferer affords me silence to see that others have it worse than I do.
Being a considerate sufferer doesn’t mean that I deny my disease or my needs. It just makes me a better human being.
Being right is simple.
Being right is being just.
Being right is accepting diversity.
Being right is being open.
Being right is not always popular.
Being right is knowing when you are wrong and saying so.
Being right is being kind at all times.
Being right is being liberated.
Being right is being respectful.
Being right is knowing when to fight and when not to fight.
Being right is being equal despite our differences.
Being right is knowing how to let it go.
Being right is knowing you don’t know what you don’t know.
Being right is being free.
Being right is the voice of reason in every situation.
Being right is what we all deserve because being right is...RIGHT!
As a person who takes immune suppressing drugs and who, as a result of said drugs, has problems with keeping her white blood count where it is supposed to be, I take germs…your germs to be specific, very seriously.
So, if you have a cold, the flu or any other wildly contagious sickness, please stay away from me until it’s gone! I won’t be offended. In fact, I’ll take it as a sign you care about me!
There is one sure fire way to reduce the risk of spreading colds, the flu and all the other nasty “junk” that we get this time of year….WASH YOUR HANDS! Washing your hands is the number one universal precaution we can all take in reducing the chance of infecting other people with bad germs. We simple don’t do it enough.
In case you don’t believe me, here are some facts about the importance of hand washing: (From the CDD)
- It is estimated that washing hands with soap and water could reduce diarrheal disease-associated deaths by up to 50%
- Researchers in London estimate that if everyone routinely washed their hands, a million deaths a year could be prevented
- A large percentage of foodborne disease outbreaks are spread by contaminated hands
- Handwashing can reduce the risk of respiratory infections by 16%
- 80% of all infectious diseases are transmitted by touch
95% of the population says that they wash their hands after using a public toilet. However when 8,000 people were monitored across five large cities in the US, they found the actual number to be more like 67%.
- People should wash their hands for a minimum of 30 seconds.
- It reduces the spread of colds in the general population by 21%
So, please remember to wash your hands and do it:
- Before you prepare food
- Before you eat
- Before and after caring for children and the elderly
- Putting in or taking out contact lenses
- After taking out the garbage
- After using the restroom
- After blowing your nose, coughing or sneezing
- After playing with pets
- After coming into contact with someone you know is ill
- After touching surfaces in public places
- Before and after providing any kind of wound care
- After handling money
- After cleaning your house
- After doing laundry
Or any other time you come into contact with something gross!
It can be hard on the skin to wash your hands so frequently but that’s what Vaseline therapy is for! Lather that stuff on your hands at night before bed and the throw an old pair of CLEAN sweat socks on your hands and they will be soft as a baby’s bottom by morning.
If you are looking for a more organic solution to the use of Vaseline, I recently read that using coconut oil does the trick as well in helping to keep hands from drying out too much during the winter months.
First Like One Another
Then Pay Attention
And Show Respect
Give Frequent Hugs
Remember To Have Fun
Always Keep Promises
Make Amends When You Should
Refrain From Judgement
Know When Not To Speak
Say You’re Sorry Even When It Isn’t Your Fault And Mean It
Know Each Other
Don’t Hold Grudges
Allow Love To Evolve
I’ve always been the caretaker, the doer, the one who looks out for others. Since my diagnosis of sarcoidosis, I have had to change roles and not just ask for help but accept it, sometimes even when I haven’t asked for it.
So it’s hard to adapt from “helper” to “helpee”. I don’t like it much. It’s a humbling blow to my pride. But, in the process of making this change I have learned that while I can’t be useful in the same ways I was a “helper”, I can still find ways to be of service as a “helpee.” I have had to redefine what usefulness means to me.
I have come to understand that usefulness comes in many forms and it shifts and changes as situations dictate. There is more than one way to be of use. I don’t always have to swoop in and save everyone in need. Sometimes, I can quietly sit in my living room and write a blog post.
Or, I can make a really nice dinner for my husband when he’s had a rough day at work.
Or, I can quietly listen to a friend who needs to vent.
Being of use can be as simple as smiling at a stranger who looks sad.
It can be as easy as holding a door for a young mother struggling with a baby carriage.
And the thing is, now that I am a “helpee”, I actually notice the sad strangers and the young mothers in need more than I did as a “helper”. I have developed a keener awareness of my surroundings because of my own illness. Strangely, I am more empathic as a “helpee”. I have a richer understand of the need for help.
Even as I think about my career, I was probably the most useful to people when I was a home health aide, not when I was a healthcare administrator because being of use is about the basics. It’s not about quantity. Instead, true usefulness is about the quality we put into being of service to another. It’s about paying attention and knowing that even in situations were we can’t physically do something, sometimes just being there is enough.
We are never without the ability to be of use in this world even when our circumstances have limited our abilities. We just have to be open to finding new and different ways of sharing our gifts.
Being chronically ill does not make us less. It alters us and in our alteration, we can still be of use. Our value does not change so long as we find new ways to share it.
Arturo Giovannitti was an Italian who emigrated to North America in the early 1900s. It was a time of great discrimination and inequality for Italians in the United States then. Italians were falsely considered a lesser people, as has unfortunately happened far too many times to far too many different ethnic groups in a nation dedicated to the “poor huddled masses yearning to be free”.
Giovannitti studied theology, eventually becoming a labor leader, poet and political activist.
By design, my blog is neither religious nor political but when I read this sermon and thought about the state of the world today, I was touched deeply by Giovannitt’s words. I wanted to share an excerpt from what was perhaps his most famous work.
I hope you will find it as moving as I did.
"...Blessed are the strong in freedom's spirit: for theirs is the kingdom of the earth.
Blessed are they that mourn their martyred dead: for they shall avenge them upon their murderers and be comforted.
Blessed are the rebels: for they shall reconquer the earth.
Blessed are they which do hunger and thirst after equality: for they shall eat the fruit of their labor.
Blessed are the strong: for they shall not taste the bitterness of pity.
Blessed are the sincere in heart: for they shall see truth.
Blessed are they that do battle against wrong: for they shall be called the children of Liberty.
Blessed are they which are persecuted for equality's sake: for theirs is the glory of the brotherhood of man..."
There was a time when tofu scared me. I had no idea where to buy it or how to cook it. I didn’t understand the different textures of it it, soft, silken, firm, extra firm! Well as it turns out, you can buy tofu in your local grocery store! And the texture isn’t as overwhelming as I first thought either because the recipe tells you what texture to purchase. Since I started cooking tofu, I have found it to be a great meat alternative which in my case, is a good thing seeing as I’m a vegan and all.
So, don’t be afraid of tofu!
I made this recipe the other night and it was really DE-LISH!
Here’s what you need:
- 2 bunches of green onions
- 1 14 oz light coconut milk
- 1/4 cup soy sauce (divided)
- 1/2 teaspoon of brown sugar
- 1 1/2 teaspoon curry powder (There are different kinds of curry powder so you can control how hot to make this dish. I happen to be a wimp so I use a mild curry powder)
- 1 teaspoon fresh minced ginger (I didn’t get this at the grocery store so I used powered ginger…seemed to be fine)
- 2 teaspoons chile paste (I didn’t have any of this handy so I used chile powder and it was fine – the paste would probably have spiced it up though…so if you like spice…go for the paste)
- 1 package (1 pound) of firm or extra firm tofu (I prefer extra firm) – cubed
- 4 or 5 plum tomatoes – diced
- 1 large yellow pepper – thinly sliced
- 4 oz of fresh mushrooms sliced (I used baby portobello mushrooms sliced – you can use any mushrooms you want…or Betty since you don’t like mushrooms sikp them!)
- 1/4 cup of basil – chopped
- 4 cups bok choy (I like to use baby bok choy…easier in the pan)
- salt to taste
How to prepare:
- I chopped all my stuff first so I had everything ready – cut the green onion into 2 inch pieces, dice the tomatoes, chop the yellow pepper, cut up the mushrooms
- Now, when you open the tofu packaging, you will find it packed in water. Pour out the water and take a paper towel and pat dry the tofu…you can even squeeze it a little to get the excess juice out of it. Then cut the tofu into cubes
- Chop your fresh basil
- Cut the bottom of the bok choy so the leaves are free from each other
- Okay, now the prep work is done, let’s make it the stuff…
- In a large skillet, add the coconut milk, soy sauce, curry powder, ginger, brown sugar and chile paste (or powder)
- Bring it to a boil – stir occasionally
- Now mix in all the ingredients expect the bok choy and the basil, stir on medium heat, cover and cook for about 5 to 7 minutes – stirring occasionally to make sure all the ingredients are covered in juice
- Then add the bok choy and basil and cook another 5 minutes until bok choy begins to wilt but don’t over cook – stir occasionally
This can be served over rice or on its own. It can be a little watery so rice is a nice addition.
I suppose if you are meat eater…yuck…you could make this with chicken instead of tofu. I thought it was really tasty just as it is but my hubby added some store bought peanut sauce for an extra kick.
“The difference between the right word and almost the right word is the difference between lightening and the lightening bug.” – Mark Twain
Writing is a joy when it works but it is a maddening process to find the right flow of words and the right rhythm of thought.
Writing is a hunger for the correct use of language, requiring exacting care to find a proper voice, as nebulous thoughts struggle to discover a worthwhile order on a blank page.
Writing aches for accurate clarity of purpose, desperate to realize meaning.
Writing offers no reward for a completed work as no work is ever truly finished.
Writing knows no failure other than a misspelled word, a misplaced comma or a plagiarized idea.
Writing is a burden of love fueled by an active and curious mind, often attempting to escape a mundane reality.
Writing yearns for precision but rarely finds it, settling instead for mediocrity and ordinary conveyance.
Writing occasionally promises brief moments of serenity as complex ideas meld into eloquent cohesion.