Keep the Beat Going……….

 

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Happiest of Tuesdays to you EveryBUDDY! I hope this finds you having a great one. We have had that ridiculous stomach virus here at our house, so the last couple of days have been not fun . It is apparently very contagious and is making its rounds through several different states. If it is where you are at, make sure you are careful. Us lupies do not need any help with being ill. So, that being said, on we go, with our “26 Days”……

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

P. Perfection ~ Not going to happen 

Q. Question everything!

R. Research. Research. Research

S. Sorry …..You don’t have to apologize for being sick!

T. Talk….. talk to those around you about what’s going on.

U. Ultraviolet protection

Which brings us to “V”. February is National Heart Month. Heart disease is the leading cause of death among women, and in Systemic Lupus heart disease can be a significant heath risk. “Vascular” health among those of us with serious flare activity is a major problem.  Although I have congestive heart failure due to mine, with 35 to 40 %  ejection fraction, and peripheral neuropathy, and have had a stroke,  I am no expert on the subject, by any means.   That being the case, I thought it would be better to direct you to some articles …………

http://www.lupus.org/resources/15-questions-cardiovascular-issues-with-lupus

And here is a good one also ………

http://www.lupusny.org/about-lupus/fight-lupus-body-and-mind/caring-your-cardiovascular-system

Please , whatever you do, take the best care of your heart that you can, keep that beat going strong………. ❤ ❤  ❤

 

If I haven’t said it today, I love you! with all my ❤ and 🙂 always ((HUGS)) ~ Ruby J.

Soak up the Sun…..(or maybe not.)

It’s the weekend! WhootWhoot! I hope you are enjoying yours so far.  Mine shall be mostly under the radar , I think. A trip to the grocery store, maybe. That’s about as crazy as I get these days  🙂  We are coming to the end of our ” 26 Days ” Series . We have 5 letters left! It’s been a pleasure sharing all of my experiences with you, and I hope it has been some help for you. So far our list has been………

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

P. Perfection ~ Not going to happen 

Q. Question everything!

R. Research. Research. Research

S. Sorry …..You don’t have to apologize for being sick!

T. Talk….. talk to those around you about what’s going on.

That brings us to “U”  .  “U” is a very unusual letter when you think about it. If someone asks you to come up with a word that starts with it, you probably have to think for a few minutes.  But in fighting  lupus , believe it or not , there is a word that starts with the letter U that they warn us of right off the bat. And that is Ultraviolet rays. Any rheumatologist worth their salt will tell you either at your first appointment, or very soon thereafter, “Try to avoid the sun. ” “If you DO go out, wear long sleeves.”  “Get a good UV blocker and apply it generously. ”

I generally explain it to people as , “I’m basically a vampire. ‘AAAARRRRGH!!! The hideous light of the DayStar!!!!’  ))makes shrieking noiseswhilemeltingintothefloor((( that type thing”  .  They usually get the gist of it , when I explain it that way. And it’s basically true.

The sun can cause your autoimmunity to kick off, making your body attack itself. So sunscreen is your friend.

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I really like this one , for everyday. It’s light, but still provides 21SPF.

https://www.covergirl.com/beauty-products/face-makeup/foundation-makeup/clean-matte-bb-cream?&utm_source=google&utm_medium=cpc&utm_term=%2Bcover%20%2Bgirl%20%2Bbb%20%2Bcream&utm_campaign=Covergirl_Search_Brand+Awareness.BMM&utm_content=sHAOlfH0s_dc%7C115881177878&gclid=CLbk7-nB9tECFQaewAodwTgLyg

You can also buy sunblocking clothing; long sleeve shirts, hats , light jackets , etc.

Solumbra offers tons of choices in these areas

http://www.sunprecautions.com/

However you go about it, just make sure you protect yourself. The sun can cause your rashes, incidence of skin lesions, and other not-so-fun things to increase. Not to mention the fatigue that it can bring.

There are, a few things along the way that I have noticed about this.

One benefit of it I have noticed is, my skin is in great shape. Loads of sunscreen wearing, no sun -worshiping , has kept me wrinkle -free.

But there is a serious downside. I am , and probably forever will be, deficient in Vitamin D. I have to take loads of it , to keep my numbers up. This is definitely something that your doctors should keep checked, as well.

So there you have some of the long and short of sun protection. Do your own looking into what works for your skin type. What you like as a style, and what keeps you healthy.

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

Yakkity Yak……..

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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.

Love Means~

Good morning EveryBUDDY! I hope you are having a wonderful Monday so far . Mine is , as my Nan used to say, So-So. She would like President George Washington say, “Cannot tell a lie.” , so if asked would not say she was fine, but only “So-so. ” We are now only  7 letters away in our “26 Days Series” I hope you guys have enjoyed coming on this journey with me, and hope it has been some help to you. I have enjoyed writing it. If you’ve been keeping up, the list so far has been…..

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

P. Perfection ~ Not going to happen 

Q. Question everything!

R. Research. Research. Research. 

So that brings us to………the letter “S”

girl-sorry

Such a tiny little word. Five little letters. And we say it all the time. With our illnesses or maybe even combinations thereof, we somehow feel that we must suddenly apologize . To our families, our friends, to our loved ones, to our bosses, to any and all things. It’s our fault. It’s our fault that we’re in pain. It’s our fault that we ‘re fatigued. It’s our fault that we’re nauseous. It’s our fault that we’re in the hospital. AGAIN. Okay. Let me just stop you right there. I will tell you what my husband tells me practically daily. JUST. STOP. “These things are not your fault. You have absolutely no control over the things you have NO CONTROL over. You need to stop apologizing. It’s a draining activity and we can’t waste our energies on things we have no spoons for. We did not ask to get sick. We did not ask to get dealt this crappy hand of genetic cards. But here we are. We cannot re-shuffle. We must play. So don’t apologize. Just BE. Be you. Be what you can, with what you have, where you are. That is definitely NOTHING to be sorry for.

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

GOOGLE MD. ~ and proud of it.

Hullo to all of you on this fine Sunday EveryBUDDY! I hope it finds you well! I am up and at’em and have been since about 1 a.m. with the prednisone jitters. Just another one of those lovely side effects. I hope your weekend has been going well for you! Mine has been decent. Not great, not awful, just decent. Sometimes that is all we can hope for. Anywho. Here we are , Haha. R. Down to the letter, “R”  Here is the list so far …..

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

P. Perfection ~ Not going to happen 

Q. Question everything!

So , today’s letter is “R” is another really elegant letter , really . It’s the first letter in my name, and one of the first ones I learned how to write. Today it stands for “Research.” When you are first diagnosed with a chronic illness, you kind of are just in a daze. You are just fogged over with this haze. The thoughts just crash in on you with this horror…….”Oh crap. This is my life now. What is going to happen to me? ” So you just take the stack of prescriptions that the doctor hands you , go down the hall to get your blood work done and you leave with a kind of weird numbness. Only later does it hit you that you asked NO questions, you thought. You didn’t ask what would happen. You only did what you were told like a good little patient. You were “compliant. ” And some people continue in this pattern, over and over , for fear of upsetting the “Almighty” the physician.

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This is VERY dangerous behavior. And I allowed myself to nearly be killed by it . By my first rheumatologist. I don’t think it was intentional on her part. She just was very busy , and very arrogant. Lots of doctors suffer from an overload of patients, and the “god complex”. This is why research is so important.

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READ. READ. And then read some more. And YES, as much as doctors will tell you Google the heck out of stuff. I don’t care what they say. The internet is a very valuable tool . We cannot afford to not make use of it. In our fight against what we have going on we must use every tool we have at our disposal. Because you know what they call a doctor who graduated at the very bottom of his class in medical school?  ———–Doctor. Yeah. So there ya’ go. I make no apologies for my snark . Heh.

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

60 Questions ~

Happiest of weekends to you EveryBUDDY! I hope this finds you with a totefull of spoons to spend doing what you want to do today with the people you love. I’ve well and truly got the crud ( a U.T.I.) , and it is cold, cold, cold! here. I did not sleep worth a flying fig last night, and I am exhausted. So my weekend is not looking real peachy. Anywho. You guys do not need to hear all about how crummy I feel, lol 🙂 We are all the way down or up to the letter “Q” in our “26 Days” Series! WhooHOO! If you’re following , or just joining in, the list 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!

M. Medications

N. No

O. Okay

P. Perfection ~ Not going to happen 

Which brings us to  “Q” .  “Q” is beautifully odd letter. It looks gorgeous written , especially in calligraphic form. I’ve always had a strange fascination for it, when I was very small  I had a pen set, and I would practice writing it , over and over again. And in my mind it stands for “Questions” . My Daddy has always said that I have always asked more questions than any person than he has ever known . I talked very early, learned to read when I was about 3 years old, and have never stopped asking questions since.

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I wanted to know everything, and I wanted to know it now. I was always pretty sickly , though. I was very small. My Grandpa called me P. Which was short for PeeWee because I was such a runt. Which was pretty much a foreboding of what was to come. But it has taught me what ALL people with chronic illness need to know . You need the power to question. Question the doctors. Question your family. Question other people. Question the research. Question the pharmacists. Question the establishments. Use the power of the question everywhere you go. And don’t you dare let anyone make you feel bad for it!

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It’s OUR lives we are talking about here, and we must use every tool in our tool boxes to live to the utmost. No QUESTION about it. 🙂

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

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.

 

 

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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.”

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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.

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