Tuesday, April 10, 2012

Speaking Unto Others

One of the hidden blessings of having Lupus I would have to say is the ability to empathize with others who are in similar yet very different situations. It’s story time folks…

A person who I have known for a number of years (pretty much the majority of my life) through my Mom’s work was diagnosed with esophageal cancer this past fall. For those of you who do not know about this kind of cancer, it is not the one you want to have and survival rates are very low. So many things rang true to her in the exact same way they did for me. Tests that should have taken days to get results took months, no answers and the droves of well meaning people just ripping apart the tender flesh of her emotions. Being in those shoes is extremely painful, I know because I have been there.

What does one say to those who are sick and are in need of reassurance even though in the end, the outcome will not be what one desires? How does one show support? Here is what I wrote to her and subsequently had a pleasant conversation with her about.

“Dear Mrs. Lisa,

I heard you are going through a rough time right now and it really isn’t very pleasant. No matter what I say can’t make it go away or fix it. I’m sure you’ve heard lots of well meaning sayings like “I’m so sorry to hear that” or “feel better soon!” Which can become old, repetitive and quite monotonous (at least it has been in my experiences and mostly from people who have never faced anything of the magnitude.) So, instead of saying anything like that because honestly it just makes me sad when I hear it said to me… are you tired of chicken soup yet? After battling Lupus for three years, I can honestly say I am VERY tired of chicken soup. It may be a classic but I am ready for some tomato! ‘Possibly with some grilled cheese too.
I can in many ways relate to what you are going through. I myself have Lupus which is not cancer, no, definitely not cancer but a life changing illness all the same. There are good days, there are okay days and there are really bad days. Somehow I just keep on trucking, though I cannot give myself all the credit… I have a wonderful support system. One of the most important things I have found in battling Lupus has been having other people/animals/things need me. My biggest motivating factor to get out of bed is to go and see my horse. The day nothing or nobody needs me will be the day I give up. Finding a reason to live can be very hard sometimes but knowing one is wanted and needed makes it easier (at least it does for me.) My friends are always extremely supportive and I am thankful for it. I have better friends now than I ever did before thanks to my illness. It’s not the quantity of friends, it’s the quality that matters.
Having lots of tests done, painful procedures and experimenting with drugs can really suck. I have been there, done that AND got t-shirt. There are things one can do to make the time a bit better. Magazines, I love them! In a busy hospital setting with those beepy things and flashing monitors it can be really hard to focus on a book. Magazines with lots of pictures are great! You can just read a page and not have to read it over seven times because you got distracted. The only book I was ever able to read (in this kind of situation) was with a friend. She read me “The Last Lecture” over skype. After reading the book with her, I have never looked at my life in the same way. I think you might like the book… it would hit very close to home.
Don’t be afraid to take off your cape. It seems like everyone expects ill people to wear some sort of super hero cape. Like we’re never scared or hurting or depressed or wanting to give up. I take off my cape. It’s not pretty but it happens and it’s good it does. Keeping those emotions in does not help at all. Eventually they just spill out in one cathartic moment anyways… taken by experience yet again. This is when good friends come in. Mine have always offered me a hug, a tissue box and their undivided ears/attention. Plus admittedly, my mom’s sleeve is pretty good too. Especially the clean ones because after she’s been to school they can be kinda gross.
Now for the “elephant in the room”: the unknown. In life I have been blessed to have the most quizzical “white elephant.” How does one deal with the unknown? I sure don’t have all the answers… I don’t think anyone does. Lupus is of unknown causes, the cure is unknown and how bad it will become for me is unknown. Little by little more things are becoming known about it. Living daily with these great unknowns can be scary. What takes the fear out of it for me is: knowing no matter what I will always have the people who love me to support me. Plus, I could waste my energy (spoons) on fretting about what I cannot change or I can just live life to it’s fullest. I’ve chosen the latter of the two. Life actually has value when there is meaning to it. Honestly a person is not done with life until they decide to be done with it. Living is different than existing. Everyone exists but few people actually live. Lupus has taught me to live. I used to be afraid to not say or do what I wanted to (within correct social bounds.) Now I am highly ambitious, not afraid to be myself and I enjoy being my self because I have realized I only have one life to do it in.
Why did I give you a spoon? A spoon is a value and symbol for energy (for all these years scientists have been getting it wrong, watts what were they thinking?!?!.) People with chronic/severe illnesses like myself have limited energy during the day. Generally I will express my energy level with the number of spoons I have. An average number of spoons for me would be about seven. Healthy people have an unlimited supply of spoons. I gift you one of my very precious spoons, I think you’ll need it. One can never have too many spoons, just not enough.
I wish you droves of spoons in the upcoming times and lots of good days. I’ll be cheering for you!
Kathleen “

She put the spoon to good use the day she got the letter with the spoon she told me. The look in her face was something I cannot express through words. There wasn’t any anger or sorrow just almost a peace.

By the time January came around this year, Mrs. Lisa was really not doing well. However, somehow she just kept on smiling and even though she was so sick, she couldn’t think about herself. I volunteered at a fund raising breakfast for her and she wanted to pay her own way in for a breakfast in her honor! She has been awe inspiring and inspirational for me.

Come February she was approved for alternative treatment in Mexico, however she herself did not want to go. Her family wanted her to go. So, she went and while some progress was made… cancer is a bitch. She came home just about a week ago and I will miss her empowering spirit.

All this time I have watched, listened and talked to her and about her with a perspective only another ill person could give. Some of her friends have been frustrated about how she just doesn’t want to continue, but I understand and have helped to bring them a greater understanding in some ways.

Now there is nothing to be said. No words. Presence speaks every word possible.

Lupus has enabled me to do something that had I not had it, I would have probably just sent a “get well card” and called it a day. I would have been just as frustrated at her as her family was sometimes during her treatment process and puzzled by some of her actions. This goes to even including some of the medications she is on, I am on too… so, yes, understood.

Turning a weakness into strength. Thank you Lupus.

~Update on me: Pain more than anything has been my issue in the past week. I have had very tender lymph nodes all over my body (where those suckers are located… yeah…), joint pain in my hands that has at time been trying and pain about mid/lower spine area that is very dull/annoying. Fatigue has been there, more so when the pain is worse. Just normal crap one might say. ~

Many Spoons!

Monday, April 2, 2012

Disappearing Drugs

I was greeted by a text message yesterday afternoon from a fellow spoonie, someone had stolen several doses of her strong narcotic pain medication. Only allowed ten a month and now down to eight, that might not sound like a big deal but when you are in so much pain you cannot function... It is a very big deal. These drugs are not "fun" drugs by any stretch of the imagination and can have a large range of side effects. This is also a good reminder of prescription safety measures that everyone should exercise if they have drugs in their house. In the case of my fellow spoonie friend, it was pretty unpreventable and by no means was anything done wrong on her part to have the theft occur. Sometimes it just happens. Pain happens too and unlike the person who stole it most likely for recreational uses, these meds can mean the difference between being up for 36 hours in extreme pain or sleeping in relief for eight hours. This is serious buisness.

People think when they hear of narcotic meds how great it must feel to be high and disoriented from the world. It is just not so. The effects my stronger set of meds have on me is highly undesirable. They make me dizzy, drowsy, "checked out," I am in a haze for quite a while after the medication it's self has worn off, constipation, basically if I put it short and sweet: it really screws up my system. I don't like taking such strong stuff when I need to but I can only tolerate so much pain before there has to be an end. There is nothing that motivates a person to kill themselves faster than being in extreme pain. So, recreational people, please go smoke some weed instead, I promise you it will be better than the narcotic stuff. Plus people like me won't have to spend a night in lots of pain that could have been prevented had someone not stolen the precious small allotted narcotic pain meds people like me do get.

How to prevent theft of these strong drugs can be sometimes difficult. In the case of my spoonie friend, the prescription had just been filled and she was with family. Sometimes sadly it is even too tempting for close and supposed to be trusted family to not take the meds, as it was in this case. My policy for drug safety with what I take is fairly tight. First if I carry a dose on me, it has to be ON me. Someplace where I would notice if someone was trying to take my precious dose. Purses are not the place for narcotics, they are too easily infiltrated. Second, don't talk about the specifics of the narcotic being taken. Things like name, dose and strength should not be shared unless whomever one is sharing the info with is highly trusted. Third, get a good locking safe or medicine cabinet in a very hidden spot in the home. A smart person does not leave such powerful drugs out in the open, they must be concealed. Finally, medication side effect and receipt sheets should be finely shredded. Or else the recycling bin could be free advertising for someone to come in and clean out one's precious store of narcotics.

There are few things that can infuriate me faster than hearing about someone not getting the pain relief they need due to medication theft. I had to take one of my strong doses of pain banishing medication after I busted out in the butterfly rash and had swollen joints fairly out of the blue late yesterday evening. Had I not had the dose to do so... I would have had to spend the night shaking in pain. Not fun. Okay, I will now jump off my little spoonie soapbox.

I wish you all a very pain free and good week on this second day of April. Today is the first day of spring quarter and I am slightly scared. I am in for eleven weeks of very intense learning, including statistics. I know in the end... Whatever will be, will be. Now to get out of bed...