About Me~, chronic illness, humor, Uncategorized, Writing

“Anybody Know the Number for “911”?

“Why would you even say that?”

“I don’t find that funny. “

“You shouldn’t laugh about chronic illness.”

“If you do that , people won’t take our issues seriously.”

“You really offended me by making that comment. “

These are all things I have have said to me, by people WITH chronic illness and even people WITHOUT.  Apparently, if you suffer from a disease, you get your “humor card” taken from you , and it is now NOT okay for you to be a happy person, or find any kind of joy in life.

So , I’ll start this next paragraph by saying, lest you think I have no right to speak on this matter, that my diagnoses in order are, Systemic lupus , heart failure,  Sjogren’s, Raynaud’s, POTs, dysautonomia, and EDS. So trust me, I have been around the medical merry-go-round. I many times have  pain that would put most people on the floor, have had so many surgeries, that they don’t give me enough lines on the medical forms, and so many allergies that they no longer even put them on the ER bracelets. I just get a big red one, that says, “See List”.  I have been sick since I was about 7 ( I was so sickly that my Grandpa called me P. , short for PeeWee) , and VERY ILL since I was 14. I didn’t get diagnosed until I was 19, so I had five years of basically every doctor saying to my parents, “She’s just lazy. ” and “She’s just wanting attention. ” So you develop a thick skin, and I developed  a sense of humor from the craziness of it all.  Sort of like OR doctors, ER doctors, etc. That gallows  humor.  I CAN and DO find the funny in just about any situation.

I’ve learned over the years that there are two types of people, when they find this out about me. They either “totally” get it, and love that I make a joke of it, or they are so offended they can’t take it.

But my question to them has always been. “Well what SHOULD I do? Should I be this joyless, soulless person, who is angry about things I can’t change or control?  Should I rail against the Doctors, the nurses, the techs and even God?” If your answer is “Yes!”, then my reply would be, “And what would that help?”

Rather , isn’t it better to find joy where you can? To laugh over the quite frankly ridiculous things that become necessary when you’re stuck with a lifetime illness?  Isn’t it better to be positive?

I am sorry if you think it’s wrong somehow , that even though I have more issues than you can shake a stick at, that I am happy anyway.  I am sorry if you find it strange that I am able to laugh , not BECAUSE of how things are, but IN SPITE of them.  And to be quite frank, and  I am sorry that even though things are hard, that you have no way to smile.

But I am NOT sorry that I AM able to find joy. I will not  apologize for coping with the circus that is my life , with humor.  ( P.S. Below, find an attached article about the effects of gallows humor and how it helps us cope in stressful situations. ) https://meded.duke.edu/practice/wp-content/uploads/2014/07/Gallows-humor-in-medicine.pdf

505099020 (1)1200px-Brown_paper_bag_texture (1)

 

 

Advertisements
About Me~, chronic illness, humor, inspirational, Uncategorized, Writing

Unsaid~

 

74a353ddc5d7166fc15f88c744e5ff71

 

I was  in the doctor’s office again this morning . ( Big shocker there, right? Heh. ) No, with lupus and it’s many lovely cab-riding co-morbid leech-y partners sometimes weekly visits are a given . Sometimes even MORE than one visit per week is something you just say , “Meh.”, to, at this stage.  I’ve been feeling puny as my Daddy says since last week. Without going into gory details, ( Oh, who am I kidding……..tossing the lunch monkey, making “the noise, that noise that shall not be named” as my teenage sons say in dramatic tones,  general all  -over pain,  congestion of the size that back-hoes are needed to haul away, and just basically wishing I could curl under my floofy grey ginormo cover and dis- a-frickin- pear) . I finally gave in today and went, where my nurse Cynthia gave me the “look” , meaning ,”And you didn’t call me last week ‘WHY , YOUNG LADY?!?”  Sigh. I know. ‘Cause I’m a moron. General knowledge at this point.  Anywho, that tidbit of miscellany aside, she got me all vital-ed and everything , and I saw the doctor , who’s a peach.   If you can say that about a jolly 260 pound linebacker sized gent who looks like he crushes coconuts in his spare time, but is really the kind of dude who takes his little girl to get her nails done Disney Princess style. I might say it, but maybe not , like to his face. 🙂

 

f4a2ff3c7de5e1f4bf43aa52cb452526

So turns out , I don’t ( By the grace of God , have the actual flu or strep , which IS going around, GAG me with a thousand troll toenails. ) I DO however have a severe sinus infection and probably like bronchial junk which goes with. ANYWHOOOO. So this next part requires kind of a backstory so that you can understand the following without me seeming like a total and complete loon.

See , I’ve been sick, for a very , very long time. Since childhood. And in the early 80s there was not a whole lot of knowledge about auto immune disorders, especially in children.  I mean , there is still not a slew of things known about it now, even in adults and back then in children , you might as well  have been an alien. So I was in the hospital.  A LOT.  Pretty scary experiences for a small child, you have to admit. But I was actually pretty lucky. I got to go to the hospital I was born in . And see the doctor who delivered me, and the nurses who worked there? I went to school with their kids, who were all my age. And our hospital was always a little bit old fashioned, and I remember it had the cast iron beds. The neat what people consider  the “vintage” kind now.  Our town was so small that the mayor was the X-Ray tech.  The hospital cleaning lady , was my church’s secretary and roll taker. One of the nurses was the police chief’s wife. I’m named after the delivery nurse who helped my Mom in labor.  I said all that to say this, one of the nurses there was always particularly close to me. She just seemed to always know when I needed something. I always tried to be brave, because I know being sick freaked my parents out. They didn’t know what was wrong with me , in those early days, and didn’t really have a way to pinpoint it. They just knew I was frail and in a lot of pain.  But Cynthia, she just knew how to set it right. With me, AND with them.  And she had this great laugh, when you heard her in the hall, you just somehow knew, no matter what things would be okay.

The funny thing is, that’s her that  works in my local doctor’s office now. THAT Cynthia.  While I was sitting in exam today , waiting to get my injections for my infection, I heard that laugh, and started to tear up. I couldn’t help it. She comes in with the shots all ready to go, and looks at me. I told her, ” I need a hug.  When I heard you in the hall laughing, it brought back so many memories of cast iron beds, and scary days, being afraid, and not knowing what was going to happen , or even if I was going to make it. But I’d hear your laugh in the hall, and suddenly I’d just know , ‘Cynthia’s coming. It will be okay now. ‘ ”  And then I couldn’t speak. I was just hugging her and bawling my eyes out. You just don’t know how much stuff like that means to someone.

She told me , that she had needed that today. So I was glad I said it.  Oh how blessed I have been to have had my care team from PCH and Mercy Medical. My hometown. And if you have people like that in your life, tell them! Tell  them now. Don’t wait. You don’t find them everywhere, trust me. I have trusted these people with my lives , countless times, and they have earned my gratitude, my heart, and yes, I tell them without shame, before it is gone, the time has passed, and they aren’t here anymore. I tell them, ” You mattered to me!! I love you!”

b1b54273994fb72e325fc5c6fc04fadb

About Me~, chronic illness, humor, inspirational, Uncategorized, Writing

Yakkity Yak……..

best-yik-yaks-600x337

Happy HumpDay EveryBUDDY! I hope this finds you having a good one so far. It has been a crazy roller-coaster week for me. I went to see the neuro-specialist yesterday and received some long awaited answers. ( I know we are still doing our “26 Days Series, and this will tie in, I promise. ) I have had neurological problems since early childhood; severe headaches, attention difficulties, etc, although , you know that kind of thing was not really treated in my generation. In my teens the headaches became unbearable, and with pregnancy ; let’s just say, they were the kind where you went to the E.R., and begged to be put out of your misery. After finding out I had systemic lupus at 19, the neurological problems only snowballed. Neuropathy; that lovely feeling of sticking your extremities into a light socket repeatedly (ZZZT!ZZZT!ZZZT!) , brain “fog” ; having done  a  simple task ; like writing a check , a million times , and then suddenly not knowing how to do it (What do I put on that line again?!?) , and then the final blow ,  an actual stroke that for a couple of days left me paralyzed from the neck down (Oh crap. My nose itches, and I can’t even move my hands. This is a problem I had NOT anticipated. ) . And we just yesterday found out left me with permanent mid-brain damage. We HAD thought I was having seizures of an epileptic variety. The specialist, who is tops in his field is almost certain I am not ( He figured this out when ……….He said …………move your eyes left………….I attempted to , but the whole ROOM felt like it moved left, I hereby proceeded to simultaneously attempt to toss the lunch monkey on the good doctor’s Italian leather shoes, and then pass out .) Which is apparently hugely autonomic and NOT epileptic. This is both GOOD and BAD news. The good news being , this brain damage is static . It is where it is , it is not going anywhere, it won’ t move, or get any worse. The BAD news being , it is where it is, it is not going anywhere, it won’t move. It also can’t really be treated.  (In the good doctor’s defense, he stood right by the exam table, and patted my hand, reassuring me, while I tried valiantly not to fall of the edge of the Earth. He seems like a very decent bloke. ) There’s nothing to be done for it. This place where it is damaged controls the wake\sleep center of my brain, the pupil function of my eyes, and the temperature control of my body. So basically, I have no way to tell my body to shut off, go to sleep, shut my pupils against the sun, or regulate itself against heat or cold. And I wonder why I feel lousy. Heh. Anywho. The doctor wants one more test to absolutely rule out seizures, but he is almost certain the midbrain damage is the cause of all my troubles. The reason I said all this, was to say, 18 years ago , when I was diagnosed, I would never have told a single soul all of that. I would have been embarrassed. I would have said, “People don’t need to know that. ” “People will laugh.” “People might make fun of me.”  But these days , I think it is so important that I use my experiences to tell others what can and DOES happen with lupus. I didn’t know that heart failure, stroke, neurological, and autonomic failure was so rare in lupus. Most rheumatologists will only see one or two cases of it in their entire careers. So if I can talk to other people, and educate them about what I am going through, I want them to know. Lupus is so much more than just joint pain. Talk to someone. If you know someone with lupus , ask if you can talk to them about it. Ask them questions. Talk to them about their feelings. Talk to them about this stupid disease. Talk to them about the lack of options that we have. Talk to them about the lack of research. Talk to them about how they feel about the lack of doctors, and care. If you HAVE lupus, talk to your family. Talk to your friends. Talk to your doctors. Talk to other lupies. Don’t isolate yourself. I will basically answer any question openly, if people ask honestly. I learn, they learn………win, win.

And because I got totally sidetracked, today’s letter was “T”, by the by. “T” for talk.

Oh, and if I haven’t said it yet today, I LOVE YOU! with all my ❤ and 🙂 and as always ((HUGS)) ~ Ruby J.

About Me~, chronic illness, humor, inspirational, Uncategorized, Writing

It Ain’t Happenin’ ~

UGH. Double UGH. I’m miserably behind. Or maybe I’m just miserable, I dunno. I have struggled for the last two days to even stay AWAKE , much less find ANY type of motivation to write. I hate that . I hate it with the flaming passion of a thousand suns. I enjoy writing. It is one of the only things that I will actually do when all else fails. So when I cannot find the motivation to do it, I feel broken . I feel as if lupus has stolen that last little bit of something that makes me tick. If you know what I mean. So , double UGH. AGAIN.  Excuse the self-pity , there. Anywho, I’m back.  We are 14 days into our “26 Days” series and if you are keeping up, or just joining us the list currently hits at

A: Acknowledge and Accept

B: Breathe.

C. Find  Comfort

D. Get a Doctor or team of them you can trust

E. Exercise ~ even if it’s just a scoonch ( Hey ! Scoonch is a word!)

F. Have Faith

G. Set a Goal , even if it seems small

H. Hugs! Everybody needs them!

I.  Sometimes we need, Isolation 

J. Rid yourself of Junk

K. Keep Kindness as a philosophy

L. Laugh long, laugh often!

M. Medications

N. No

O. Okay

So that brings us currently to ……“P”.   Which is actually another difficult letter . It’s something that so many of us struggle with and it adds to our illnesses because so many of us happen to be type “A” people . I don’t know if that happens to be a coincidence, a side effect, or just an anomaly. It’s PERFECTION.  And let me tell you first -hand , you are never going to find it. Especially with chronic illness.

 

 

my-house-looks-like-im-losing-a-game-of-jumanji-e7180

I was raised to keep very clean house. Things are supposed to be spotless, right? All the laundry put away, all the dishes done, all the bedrooms done, clean sheets put on, bathrooms completely done up, the works right? And there’s nothing necessarily wrong with that. If you’re in a shape to do it, and maintain. But let yourself get struck by never ending fatigue, pain that feels like you’ve been struck by a semi, your joints as if they’ve been somehow super-glued together, and suddenly even MOVING off the sofa, much less moving that laundry basket , it’s just not going to happen. Then your OCD sets in, the anxiety sets in, so the fatigue becomes even worse, the stress level ramps up, your lupus suddenly decides to flare to new heights and you’ve now escalated yourself into hospital -level chaos. Good show , old girl! Great times, what? So. Perfection. Is it actually worth all that?!? I had to decide. Are those boxes in the corner really causing anyone all that much distress? Or am I the only one who really cares. Does anyone really notice that there is a bit of dust on the knick knacks on that shelf? Or am I over reacting ? In the famous words of that Disney song……….”LET IT GO.”

tumblr_oa9d26cgrr1tpafe6o1_500

I promise, you really WILL feel much better. And if anyone says anything about it, let THEM go too. HA! Oh, and If I haven’t said it today, I LOVE YOU!! with all my ❤ and 🙂 and as always ((HUGS)) ~ Ruby J.

About Me~, chronic illness, humor, inspirational, Uncategorized

I Got Pills……..They’re Multiplying..

Okie  dokie artichokies! The world can now go back to its regular scheduled programming. 🙂 I. E. we are back to our “26 Days , 26 Ways” series.

So if you’re keeping up the list so far is…..

A: Acknowledge and Accept

B: Breathe.

C. Find  Comfort

D. Get a Doctor or team of them you can trust

E. Exercise ~ even if it’s just a scoonch ( Hey ! Scoonch is a word!)

F. Have Faith

G. Set a Goal , even if it seems small

H. Hugs! Everybody needs them!

I.  Sometimes we need, Isolation 

J. Rid yourself of Junk

K. Keep Kindness as a philosophy

L. Laugh long, laugh often!

And now on to the letter “M”, and it’s one of those things that we all have to discuss at some point in our illness journeys. M , for Medications. Sigh. I have had an up and down relationship with medications. Always have had. They are a double-edged sword of the worst\best variety. And there are so many opinions on them! Some people are all for it. Their attitude is, “If the doctor prescribes it, it HAS to be a good thing!”. Then there are people who are so ANTI-MEDICATION that it’s practically a religion with them.

 

41757abd04aa91f3c4d2f0fb0d69c20b

These are the people who will give you the whole, “Big pharma is a scam. They only do this stuff to make money , and if you take that you’re going to do nothing but make THEM rich, and yourself sicker!!” . But let me just say, I happen to be of the  middle of the road opinion on this matter.  I’ve had some really great experiences with medicine. At one point I took Imuran for about 2 years, and my lupus went into remission! That was amazing. But I’ve also had some very-not-good experiences with medications. Case in point, Ambien. I took ONE Ambien , and ended up in the hospital for three days hallucinating and talking to someone I called “the green men. ” Or so  my husband tells me. I don’t remember ANY of it. Morphine is another Nay-Nay drug for me. Doesn’t do a thing for my pain, and shuts my respiratory system down. So I believe you put that in the don’t column. 🙂 And then you have the heavy-hitter. Prednisone. Oh , joy of joys. Satan’s tic-tacs. At my worst I took 80 mgs of prednisone every day for 2 years.  Yeah. Heh. Fun times.

9e6e56717c49675a874dd49526c9e4d2

Prednisone really CAN be a wonder drug. Without it, I know that my heart would have been lunch-meat for the zombie that is lupus. But it leached all the calcium from my bones, leaving me with the skeleton of an 80 year old lady. It caused me to have hearing loss, cataracts, and sent me into adrenal shock when they misjudged weaning me off of it.

So there you have it. The good,  the bad, and the very bad. So what’s the solution? Do you stay away from all medications? Do you take everything the doctors want to throw at you?

What to do ? First you have to research, research, research! Read up on it, ask millions of questions , and then ask more. Weigh the benefits against the risk. Sometimes as my Momma says, “The juice is just not worth the squeeze. ” Meaning, the side effects may be more horrible than the original problem.  Secondly, I just think we need better options! Lupus and auto immune diseases are somewhat of an orphan industry. The pharma companies don’t seem to think there are enough of us to really put in the research for it to make a profit for them. So in that case , the anti med people are right. We need genuine caring researchers and scientists to be interested in a cure for lupus! We need better, more effective medications that will be target specific.  Until then, we must make do , make the best decisions we can, and work in concert with our doctors to make sure that we are getting the best care that we can for ourselves and those who love us.

Oh and by the way, if I haven’t said it today, I LOVE YOU!! with all my ❤ and 🙂 and as always ((HUGS)) ~ Ruby J.

About Me~, chronic illness, inspirational, Uncategorized, Writing

Kill ’em with Kindness (Well,you know metaphorically, and what not. )

butterfly-border-1354124

 

Top o’ the mornin’ to you all my spoonie warriors! It is once again dreary and grey , with that drizzle that seems determined to make everything a soggy mess. The world seems completed muted of color when it does that, which I think is why it makes me sad. I’m a great lover of color. Great , large , looming , vivacious splashes of it. But anywho, I digress. We’re supposed to be getting on with our “26 Days, 26 Ways” series . ( I apologize for the randomness of all of this, my husband will tell you I suffer from ADOS . Attention Deficit OOH! SHINY!!) So back on track I go. 🙂

So far we’ve got………..

A: Acknowledge and Accept

B: Breathe.

C. Find  Comfort

D. Get a Doctor or team of them you can trust

E. Exercise ~ even if it’s just a scoonch ( Hey ! Scoonch is a word!)

F. Have Faith

G. Set a Goal , even if it seems small

H. Hugs! Everybody needs them!

I.  Sometimes we need, Isolation 

J. Rid yourself of Junk

Today’s fabulous letter is “K” , of course and it’s one of my favorite letters. Not really sure why, K’s just look elegant when written. Even in print. But “K” today will be for kindness .

f4e0affd166d678ac1ac849c8251d62c

Firstly, you have to be kind to yourself. This is a very difficult thing to do , for most of us chronic warriors, as we are generally very “Type A” people , who almost always make sure that everyone, everything, the dog , the cat and the goldfish , get taken care of, before we take care of ourselves.  It’s a very hard habit to break. And of course , all those things DO need taken care of, that’s not the point. The point is, when was the last time you were genuinely kind to yourself?  Allowed yourself a break? Did something strictly for you, other things be hanged? Bet it’s been a while , right? But it’s so , SO important! We use all our energy, will-power, brain -power, and strength , holding other people together , that we forget that our bodies need rest, recharging, and yes, just flat out being kind to yourself. Buy yourself a little something for no reason. Spend 10 minutes longer in the shower. Say “NO” to something that really doesn’t interest you. It will be okay, I promise.  And when you’ve taken care of yourself , secondly comes being able to share that with others!

53d925bfb393920395bae98e9128b867

When you HAVE that extra “oomph” from conserving your spoons, you’re able to give to other people. To truly listen. To have that time to write a friend. To visit someone on a good day. To use that cliche’ , “To pay it forward.”

Even the Bible tells us, Thou shalt love the Lord thy God with all thy heart, and with all thy soul, and with all thy mind. This is the first and great commandment. And the second is like unto it, Thou shalt love thy neighbour as thyself. On these two commandments hang all the law and the prophets.

Have you ever noticed that unhappy people , don’t really like themselves? They don’t know how to be kind to themselves, so they can’t give it away.  When we are truly kind to ourselves, we will have loads of kindness to share with the people we meet.  And to me, making someone else feel loved, or to see that smile when they feel that kindness, sometimes it’s just the medicine the doctor ordered.

Oh, and if I haven’t said it today, I LOVE YOU!! with all my ❤ and 🙂 and as always ((HUGS)) ~ Ruby J.

b29a1abf52786f996bad52c371d2cb1a

About Me~, Uncategorized, world affairs, Writing

Thirty Eight and Counting

romanichalgypsystylblackandwhitee

 

Thirty-eight. That’s the age I’ve turned this year, and 13 years longer than the doctors gave me to make it without a heart transplant. They told me , “MS. Woods , if you don’t get one , by 30 you’ll surely be dead. And that’s WITH pumping your body full of ungodly amounts of medications that I can’t even pronounce, and that you might be glad that I don’t list the side effects of here. Needless to say, sometimes you might just wish to keel over from the heart related condition, rather than the medications.

Thirty -eight. Ever since I was little I’ve had a somewhat interesting relationship with numbers. Some might even say a compulsion. How many steps is it to the mailbox? 34. How many tiles are in a certain bathroom? 12 over and 10 across. It’s kind of a calming thing to me, I suppose. Numbers were just another thing that were brought into play with the births of my sons. They were born exactly 2 years, 2 days , 2 hours and 2 minutes  apart. And they ‘ve been inseparable ever since.

Thirty -eight though, even though I’m not really superstitious . I just thought it’d be fun to know some things about the number that is supposedly  affecting my life this  year.

  • 38 is an even number.
  • 38 is the sum of each row in a magic hexagon.
  • In Norse mythology, the number 38 was said to represent unnatural bravery.
  • There are 38 surviving plays written by William Shakespeare, how sad is that , really, this great genius of a man , and all we have left of his plays is thirty -eight.

Thirty -eight. That’s probably closer to the amount of medicine bottles I have, or even the amount of doctor’s visits I make. But you can’t look at it like that.

Thirty -eight. The amount of smiles I’ve  received from World War II vets who spent the hour in the waiting room telling me their stories. Or maybe I even got thirty -eight hugs from people I didn’t even know.

Okay, Okay, Sometimes I have to be honest. Some days, I get thirty -eight vials of blood drawn, and do good to make it to the parking lot again. Some days I have to line up one of those hospital visits that might end up lasting thirty eight days.

But truth be told, it really is like I said. It’s only numbers, and I don’t put my faith in them. As much fun as it is, to say, “What a neat coincidence that is! ” or “How fun it is to notice the comparisons between things!” , I KNOW the ONE who came before there was even such a thing AS time. And who will be here long AFTER time will be something no one will ever remember.

And really, what is 38 in comparison to that?

group-flowers-pink-tulips-white-background-panorama-spring-landscape-49104495