Wow! This was the best Thanksgiving we have had in a long time. The kids and friends all enjoyed themselves and I did too! This was the first dinner that was almost completely bought from Piccadilly Restaurant. The whole turkey was not just pretty…lol… but was supper moist and flavorful, as were all the trimmings right down to the pecan pie…… hummm very good!  I have still been tired and hurting but without the worry of cooking, I was able to enjoy my time anyway. I had to stay in bed but everyone just set up around my bed and on my bed …lol… and had a great time. I think it worked so well because we were all so relaxed and not having to set a table and such. Everyone just went into the kitchen and got what they wanted and came back and we ate and talked….. used my laptop to get online and look up all kinds of funny things….. I’m so glad things went well. Not even much clean up needed. And did I say we had a good time? Oh yeah, I think I did ….a few times…..lol… But I am worn out….. seems even good times can run ya down…lol…. been so long since having a good time I guess I forgot…. or maybe it’s the fog moving in…… Hope everyone else has had a good day. Rest and be at peace within yourself until our paths cross again….. Lila

PLEASE NOTE THAT IF YOU ARE READING THIS POST AND YOU ARE NOT ON THE WEB SITE “LILA LOST IN THE FIBRO FOG…” THEN WHAT YOU ARE READING HAS BEEN STOLEN AND IS BEING USED WITHOUT MY AUTHORITY AND I HOPE YOU WILL COME TO MY WEB SITE BLOG AT WORDPRESS http://www.lilabyrdakabirdladybyday.wordpress.com 

Disclaimer: The Arthritis Foundation of  Western Pennsylvania always advises that you consult your doctor and take their advice. The essay below is a personal story of one young woman, and a humorous look at how living with arthritis or other chronic illness can affect one’s life in the most seemingly simple, or silly, ways. The AFWPA does not ever endorse ignoring any doctor’s advice….and the author now has to have another orthoscopic knee surgery as a consequence….as they say, beauty DOES come with a price! – AB

“No! Not the SHOES!” – by Ashley M. Boynes

Here’s the thing: in addition to Rheumatoid Arthritis and Celiac Disease, I suffer from a third disease. This condition is called “Chronic Shoe Lust.” Shoes are my sanctuary. And here’s my frustration: I don’t want to give up my cute shoes, even when my logic — and my doctor — tells me to. While they aren’t Manolos, Louboutins, or Jimmy Choos by any means, my closet is filled with pair after pair of (more affordable!) adorable, uncomfortable, and sometimes dangerous-looking shoes. I love them!

Sometimes, it is so hard to be reasonable. It can be especially difficult when you are 26 years old and have a seemingly endless list of rules to follow, what not to do, what not to eat, which medications to take, which supplements are helpful, when the next doctor’s appointment is, and so forth. Add in a pinch of human emotion and a dash of impulsion – and you’re surely bound to slip up here and there.

I have rheumatoid arthritis in ALL of my joints, but my right knee is a particular mess: I have a torn meniscus floating around, both RA and osteoarthritis, cartilage damage, bone spurs and calcium deposits. I’ve lost my full range of motion – my knee doesn’t fully straighten or bend – and it is constantly swollen.  It sometimes physically locks in a 90-degree angle. I have walked with a slight limp since the sixth grade. With no other choice, I’ve gotten used to my not-so-friendly knee and the pain it causes my whole right leg – from hip to ankle.

And this cranky knee? Along with my doctor and family members, it has chastised me time and time again for wearing kitten heels, stilettos, wedges, pointy-toed pumps and other variations of cute and fashionable shoes. These shoes hate me, though. My difficult knee has teamed up with said hip and foot to cause horrendous wear-and-tear to any pair of heels that I slide on to my feet, ruining the shoe by making the heel slanted and bent inward with no hope for repair. This sad display makes me unable to walk in them any further – but yet, as I consider fashion (especially shoes) an art – I do not have the heart to throw them away! That being said, however, I cannot imagine the damage being done to my joint if that is what occurs to each pair of shoes. Hmm…

Now, I AM a logical young woman. I follow my strict gluten-free diet, I take my pills on time, I take my vitamins and rarely miss a doctor’s appointment. I try to take care of myself, and try not to take on more than I can handle.

But I refuse to give up wearing cute shoes. Cute, painful, inconvenient, fabulous shoes!

I’m not sure why this is. I do enjoy the confidence-boost that I get when a stranger compliments me on a particularly stylish pair. It makes me feel good about myself, and I consider shoe-collecting almost a hobby. I know that, given my condition, the “reasonable” and “rational” thing to do is to wear flats, sneakers, or some sort of more “accommodating” shoes. Yet, I wear platform Mary Janes, open-toed kitten pumps, sandals with little-to-no support, and 4-inch stilettos…I just can’t help myself!

I know, I know. I’m “going to kill myself walking in those things.” It’s “no wonder” I limp. “Of course my knee is killing me — look at those shoes!” -  I’ve heard it all. But when I’m traipsing back to the parking garage at the end of the work day, I don’t feel so badly – because I’m joined by countless other women limping along, teetering on the edge of sanity with their sky-high heels. In that moment, I’m not alone.

Could this be why I torture myself with the heels? Maybe a part of me thinks it is easier to hide behind the guise of “it’s just the shoes,” rather than a chronic illness with no end in sight. It’s the blame game — and blaming a physical ail on having fashionable feet is much easier than the reality of the situation. I also think it’s my pride. I want to hold on to any sense of normalcy that I can, since sometimes my life isn’t exactly that of a “normal” 26-year-old. Do I have to give up something that, as silly as it is, makes me happy?

I know that I’m being stubborn, and I’m probably hurting my knee further, but here’s how I justify it: I’ve sacrificed enough. I have given up pizza, beer, “regular” baked goods, my beloved Twizzlers, and, really, any sense of being carefree. I’ve sacrificed sports. I’ve sacrificed nights out with friends. Isn’t it OK to be stubborn just this once?

I know there are far worse things that could happen in life – after all, they’re only shoes. But shoes are something I can control. The other things that bother me about chronic illness are things that I might not be able to change, ever, even if I want to. So forgive me for wanting to hold on to my shoes. After all, I need to be well-heeled while I take the steps to kick these symptoms!

What do you think, reader? What have you sacrificed because of a health condition — trivial, or serious? Do you ever “cheat” and stray from what your doctor says, like I do with my shoes?  As always, I want to hear your comments…and I’m sure I’ll be blogging before and after the surgery that my unfortunate shoe habit has, in part, led me to have to schedule. Have a Happy Thanksgiving from all of us at the AFWPA, and we hope you enjoy reading our blogs as much as we like writing them! We are “thankful” to have you as readers and as supporters of our chapter as we fight to spread awareness about arthritis and to provide a community of support for anyone suffering from one of the 117 types of arthritis & related illness! Again, comments are always welcomed and encouraged.

Be Well,

-Ashley Boynes

Community Development Director

Western Pennsylvania Chapter

voted, “Best Blogger in Pittsburgh!”

PS: Are RUNNING SHOES more your style? Be sure to sign up for our December 12th Jingle Bell Run/Walk! This 5K takes place in Pittsburgh’s North Shore and should be a fun time — all for a great cause!

It once again has been a few days since I was last able to post. We have been having quite a bit of rain and that almost always increases my level of pain. Even now I’m finding it hard to find a comfortable position while posting.The dreaded fibro fog is ever-present and makes it very hard to focus….so I may ramble back and forth… but I hope the auto-proofreading program will save my backside…lol… we shall see.  So with all my down time I got bored of looking for faces in the plaster on the ceiling and started thinking about the up coming holidays and reflected on all that I am thankful for in my life. First and for most I’m thankful for my children. They may be grown but, they are always going to be my children and I still worry about them. I recently could have lost my oldest as he was held hostage at gun point for over an hour by a bank robber. He works for a bank and they still haven’t found the man and his accomplices. He still has police protection a round the clock. I am very grateful to still have him safe and sound. My youngest will most likely be deployed to Afghanistan after he completes his training. I am grateful he is still here. So many will have to make it through this holiday season with out the ones they love. No mater what is going on in my life I will always remember what I do have when others are doing with out. Now let me look a little more at the things I’m thankful for….. this very minute ever so thankful for my craftmatic adjustable bed WITH the built-in massage…..oooh soooo thankful! Also for being able to find others who know what it is like living with chronic illness. I’m indeed grateful for all my extended family with whom I no longer associate, as I am now the black sheep since I won’t let them run my life….. yes I’m grateful. Now I have nice stress free peaceful holidays. I share my holidays with my children and friends! People that I like and who may not have family or not able to get home to their families and would other wise be alone this Thanksgiving. What a novel thought! Now, don’t get me wrong I do love my extended family…. I just don’t like a few of them very much and the ones I do….. I call and talk with them later when all the others go back home…lol…. which leads me to something else….. interstate highways and better gas prices and high airfare costs. Why you might ask? Well, them out-of-state extended family needs to drive and that eats into the length of time they stay and I can call and talk to the ones I like even sooner. I use to start cooking a day ahead of time…. well really just cooked around the clock for a day or two. Then due to my fibro cut back on some of the made from scratch foods and breads/deserts. Then changed to buying a cooked turkey and made from scratch other foods again. BUT now I’m grateful for Piccadilly Restaurants because they make home-made Thanksgiving dinner….. fully cooked turkey and all the trimmings! Yes we all do miss my home cooking {I’m not shy…lol… I am a darn good cook and will pass down my recipes} but are able to enjoy our meal all the more since I’m not in so much pain due to over doing it just to fix a meal. After all it’s not really the food…. it’s the “meal”… the breaking of bread together… THAT’S what Thanksgiving is all about….. being grateful. Taking time to reflect on all we have and the very fact that here in the US we have the freedom to make choices about the path we take …… now that is something for which I am grateful! May you and yours be blessed with joy, peace and health as you travel your own path. Take time to reflect on your blessing and find comfort in your heart and soul until our paths cross again…… Lila

PS: NOW ALL YOU SPOONERS OUT THERE…. DON’T OVER DO IT AND PUT YOURSELF INTO AGONY… “DELEGATE” IS THE KEY TO HOLIDAY SURVIVAL! SO PACE YOURSELF IT HAS ONLY JUST BEGUN….LOL… :}

PLEASE NOTE THAT IF YOU ARE READING THIS POST AND YOU ARE NOT ON THE WEB SITE “LILA LOST IN THE FIBRO FOG…” THEN WHAT YOU ARE READING HAS BEEN STOLEN AND IS BEING USED WITHOUT MY AUTHORITY AND I HOPE YOU WILL COME TO MY WEB SITE BLOG AT WORDPRESS http://www.lilabyrdakabirdladybyday.wordpress.com

i am going out of my mind… it’s bad enough the weather is changing and every inch of my body seems to want to scream out in pain to let me know. it also seemed to be a good time to catch the flu. why not? why not get it all over with at the same time? i mean… let’s stop and pause for just a moment to think about why not:

1. it’s not as if i haven’t missed enough time from work and
2. it’s not as if laying in my bed 24 hours a day/ 7 days a week doesn’t thrill me to pieces and
3. it’s not as if feeling like my head has been filled with cement is better than just the foggy feeling i usually have and
4. it’s not as if my kids don’t love joining me in my bedroom for “mommy and me” time and
5. it’s not as if that journey from my bed to the kitchen for my “once a day” trip out of bed doesn’t just make for a great “FIELD TRIP”! and
6. it’s not as if the walls aren’t closing in on me in my bedroom and
7. it’s not as if playing these same four facebook games don’t keep my interest, right? RIGHT?? and
8. it’s not as if having the flu is really that bad… I mean it’s just aches and pains…

shit. it’s just aches and pains…. what the eff? if i thought my aches and pains were bad before… let’s just say TIMES TWO! i was not an 82-year old lady anymore, i was a 164-year old lady this week. a 164-year old lady that couldn’t sleep, had no appetite and was in excruciating pain. TIMES TWO.

this week, i was unable to walk the hall from the kitchen to my bedroom after dinner one night. it was a horrible experience. i was embarrassed. i was in shock really. it was as if i forgot how to walk. i could not lift my knees up to take a step so i just held on to my husband and literally scooted my way down the hallway in my slippers, one inch at a time. i had to stop three times to take a break it was so exhausting. meanwhile the tears are just rolling because i am in pain, i am frustrated, i am pissed off because i am once again put in this position of complete invalid. i feel the words at the tip of my tongue… “I AM PISSED OFF AND I CAN’T TAKE IT ANYMORE!!!!”, instead i just go lay down… take a few minutes to get it together and then call my son in to watch “grey’s anatomy” together and get my “mommy and me” time in. i cherish this time together like i cherish sleep.

this is when i realize… i am blessed. let me say that again. i. am. blessed. i have this beautiful child. my first-born. he is  a miracle child, he was almost lost to me during my pregnancy. he is a fighter, he has been since he was inside my belly. he had to fight to stay alive and he’s kept that attitude ever since. he’s an awesome kid. he’s graduating from high school this year and i must cherish every moment i have with him. so… screw this pain. don’t let this shit take away from my moments with him. i must remember this moment right now, this feeling i have right now. these are the moments to be cherished. you don’t get do-overs in life.

thank you for reading! time is so precious and i appreciate that you take the time to help me as i work through my experiences through my blog. this has helped me tremendously get through the days and nights.

stay cool!

Nachdem es vorgestern erst noch heftig gestürmt und geregnet hat, haben wir heute fast einen Frühlingstag! Die Sonne scheint, das Thermometer ist auf fast 17° geklettert und der Himmel ist wolkenlos blau! Unsere Vierbeiner liegen alle draußen in der Sonne und genießen den Tag!

Das werden wir auch tun… ich hab Grillzeug mitgebracht und so werden wir heute Mittag mal wieder “Feuer essen” wie Sohnemann (ganz klein) immer so treffend sagt! So wie es im Moment ist, werden wir sogar draußen essen – kurios; es ist Ende November! Aber schön! Und so werden wir bestimmt auch noch einiges im Garten getan kriegen; es liegen immer noch einige Blumezwiebeln rum, die schon längst in der Erde sein sollten.

So nebenbei werde ich dann auch noch ein paar Fenster putzen; wir haben vorgestern einige neue Fenster ins EG bekommen und die sind nun soweit ausgetrocknet, dass sie geputzt werden dürfen. Mal schauen wo die Sonne nach her nicht so drauf knallt! Und dann ist Wochenende… *freu

Mhmja, gestern war ich bei meinem Doc zur Kontrolle – mit der Medi-Einstellung klappt es noch immer nicht so… *grummel*
Zwar fühl ich mich wesentlich besser und ich hab auch supergute Laune, aber der Entzündungswert im Blut ist immer noch hoch; so habe ich nun noch ein anderes Mittelchen dazu bekommen – ich bin gespannt wie das nun wirkt. Mittlerweile habe ich aber auch schon drei Mal Hydrojet und Rotlichtkammer gehabt; das ist beides total schön; saugemütlich und so richtig entspannend.. *schwärm – nur immer viel zu kurz *lach

Hatte ich eigentlich schon erwähnt, dass unser KiGa diese Woche wegen Schweinegrippe geschlossen ist? Nicht die Kinder haben’s, sondern die Erzieher! Bis jetzt zeigen unsere beiden “Wühlmäuse” noch keinerlei Zeichen, dass sie was abbekommen habe – ich geh einfach davon aus, dass unsere Gemüse- und Obstrationen groß genug sind und die Viren prima abschmettern

A few days ago, I walked from a coffee shop to the library with a large spiced tea in my hand. The air was brisk, but not biting–my favorite type of fall weather. I’d forgotten what this kind of weather felt like since I came to college. This was the weather that made me used to say, “Fall is my favorite season.” As my warm tea slid down my throat, I savored the feeling of the crisp air and the scarf around my neck. Though my heavy backpack was filled with books and homework, I couldn’t help but smile because I felt beautifully normal.

As I walked towards the library, I realized how low my pain level was and how much energy I had. With so much work in front of me, I had a lot on my plate. But there was this sudden realization, this wonderful moment, when I thought: “This is what it feels like to be a normal college student.”

I’ve barely been home these past two weeks, loaded with homework and post graduation preparation. I drink tea to make it through the long nights at the library where I camp out for hours. But I am so happy because these are things I never imagined myself doing again. So as I walked in my bright pea coat, air pinkening my cheeks, and thought about this normalcy, I sent out a big praise to Jesus.  This week has been a blessing I don’t deserve. When my friend, Jenny, commented on my schedule, I couldn’t help but grin. “I am so happy! I’m so thankful that my body can handle this!” And really this is the truth.

Later, in the middle of the week, a pizza hut delivery man  rear ended me. He rammed my car hard enough to jerk me and my back definitely felt it. I had more pain than usual for a few days. I am glad to say I am doing better now, but even if I wasn’t, even if tomorrow I was back to where I was this summer–unable to move or function–I would still be praising God for the gift of these past two weeks.

Thinking of my walk to the library, I love that moment between the Lord and I. I am glad I was in the moment, relishing the way He was glorifying Himself that particular second. I have never been the “in the moment” girl before but now, I want to be the “in the moment” girl who praises God in every moment.

… and I still can’t blog about why. *makes noise of frustration*

The fibro is really playing up, not only because of the stress of the last two weeks, but also because I have caught some kind of virus involving a sore throat, a cough and a cold. Lovely. I missed both the flu jab and the swine flu jab as a result (apparently you can’t have them if you’re ill already), so I just have to hope that this clears up before the next batch is delivered to the surgery, and that I don’t get this sodding swine flue in the meantime.

Being almost constantly ill and continually in pain is really dragging me down. I’m trying not to let it, and have been persisting in making my own Christmas cards, but it seems to be working its way through that. Hmph.

i know fibromyalgia is not contagious… but you would have really thought it was in my house this past couple of weeks…

i gotta tell you, God works in interesting ways… the last few months, my husband must have really really wanted to know what it felt like to be me. i mean he must have really been saying to himself (in bold and underlined one hundred times if this web editor allowed me):

husband: “i wish i knew what it felt like to be in pain 24/7 and not be able to sleep“

[pretend insert me saying, to myself of course:  "what a complete idiot!"]

God’s response: “some wishes are really just too easy to pass up!“

… and so begins the best blog topic to come to mind!

my wonderful husband has a pinched nerve in his neck/ shoulder area… we think. aha! so begins the quest for the real diagnosis… sound familiar? anyone? anyone?

about a month ago, while starting the mower and pulling that damn string or whatever the hell you call it, he pulled or pinched something. this started in the shoulder and then moved up to his neck, down his arm and now his finger is numb. he’s been to the primary dr. who told him he had a pinched nerve and gave him prednisone and vicodine. he felt pretty good for a week while on the meds… well… after the week, he stops the meds and boom! he feels like crap because he stops the prednisone and now he’s feeling the pain of withdrawal and pain of … well… pain! we’ve all been there.

meanwhile… i have started my new meds and while still having sleep issues, when i actually do sleep, i sleep very hard. you can’t wake me up unless you turn the house upside down. i am scary asleep… like he tells me he’s watched t.v., kids coming in and out of the room, lights are on, crazy loud in the room and i am sleeping through all of it!

strangely enough he has become the light sleeper and the one who cannot sleep. he is the one getting up in the middle of the night because the dog and i are snoring in stereo on each side of him. he is in pain and now he’s getting up, leaving the room and sleeping on the couch. what the hell is going on here?

he has now become a walking zombie. shit. now there are two of us in the house. we can’t really afford this. i mean, i’m high maintenance as it is. my husband does everything in the house and he keeps it all together. he is everything to me. what do i do if my everything is broken? i’m already broken. we can’t both be broken… can we? this fibro shit is not cool. and i’ll be damned if all of a sudden it’s contagious… noone told me it was contagious! i gotta tell you, he even had a little bit of the foggy brain… i was getting a little scared! two of us in the house with foggy brain? the kids would be running the house… ummmmmm, halo3 24/7 in one room and texting, tv and facebooking in the other. we better get our shit together! thankfully his foggy brain only lasted about 8 hours. enough time for him to get a complete understanding of what it felt like to be me.

start of week 2 of my ever complaining, can’t take the pain, husband… (did i just say that?)… and he is in some real pain (truth be told, he is in real pain, i do know and most importantly believe that). he calls the dr. and they tell him to come in for a follow-up appt. he told his dr. that he shouldn’t be in this much pain (good for him for putting his foot down with his dr!) and the dr. gave a referral for him to see a rheumatologist and to come back to see him to get a lidocaine shot which will take the pain away…. however when he sees the rheumatologist, she tells him his dr. should not have given him prednisone and that the source of the pain was in his neck not shoulder, blah blah blah… end of the day… he still doesn’t have a diagnosis. and those damn shots didn’t help a bit. can we fibro people relate? hell yeah!

he says to me… “i understand how you feel. i know this is small in comparison to what you feel, if God wanted me to know… i got the point! i can’t believe you have to go through this everyday… “

i never would have wished it on him or anyone else. it definitely makes a difference that he understands, but i don’t want him to feel pain. emotional or physical.

i find it interesting that this has occurred. anyone else have this happen in their relationship?

thanks for reading! stay cool.

If anyone that has a chronic illness says that they have come to terms with their illness, they are flat out lying.   I was “Officially” diagnosed with Lupus about 5yrs ago, did it change anything except now “IT” (being symptoms) now had a title, no it didn’t.  Having a name still = out to narrowing thousands of drugs out, to a few that “take the edge off” symptoms, but adding numerous side effects from the drug that is “Helping” you.  Confused yet?  Welcome to my world.  These afflictions I have, fibro, Lupus, ra, the symptoms are so over lapping, that honestly I don’t see how anyone including Drs can tell where one disease/syndrome ends and the other begins.  I would’t wish what I have on anyone, there are days that I wake up with tears running down my face that, is how much pain there is even when I am asleep.  Pain pills are useless, & have been for years, I have been to pain management specialists, therapists, acupuncturists, the point is unless you drug yourself silly with opioids you will live with pain everyday of your life.   I honestly believe that my pain level hasn’t decreased a bit in 10yrs, I am a firm believer that your body just becomes accustom to the pain & it tolerates it better than it did in the beginning.   Honestly, I can live with all sorts of physically pain, fatigue the hardest part is knowing that this also effects my brain.  The strokes did damage, I was diagnosed with Lyme disease, & it gets into your spinal fluid which in turn effects the brain yet again.  Lupus as well as joint pain, pleurisy, over whelming fatigue, also has neurological issues with it.  ”Lupus”, or Brain” fog is the terms that are used, there is no one that can truly understand it other than people that live with it.  I am not of Einstein quality intelligence, but I’m far from falling off the turnip truck yesterday kind of smart. lol  Others may say I am way off base, but my personality, wit, charm, & sense of humor, is alot of who I am, & it does scare me when I have my bad days.  The ailments I have are all seemly ”invisible” I don’t LOOK sick, which isn’t necessarily a bad thing, but its not good either.  There are days I literally don’t have the concentration to drive down the street, it scares me, I took my son to work one day about 6 months ago, & on the way home, I got lost it took me 45 minutes of driving out in the middle of nowhere to find my way back to town.  My son works 5 minutes from our home, & its all in town, how did I get where I was, I don’t remember.  I have visited Alzheimer patients, & it breaks my heart to see the look of such confusion in their eyes, I don’t know exactly what they are going through, but I have a glimpse & its not something I want to go through.  My “Fog” is very here today, gone tomorrow kind of thing, which is good that it doesn’t stick around, I always wonder though what is causing it.  No pun intended, but I can’t wrap my brain around that Drs are stumped on why this happens.  I have neurological problems that no Dr can figure out, how can that be in this day & age?     As you can tell I am in, one of those “I need a hug” moods, where you need someone to wrap their arms around you & tell you they have no idea if things are going to be ok, but that they love you no matter what.  lol  Most of the time, that is the best medicine just to have someone there to hug you & tell you quit your bitching.  lol

Quite appropriate song for my pity party, don’t you think? lol

Today was a bad day, I woke up around 11am, which is unusual, & I threw up a couple times, took my temperature it was 102.8, little high even for me.  Joints, muscles, small migraine the usual round of symptoms for a crappy day.   Of course nothing was going to get done again today, I coulnd’t sit up for very long without having to lay down, & I generally just felt better while I was laying down.  I had my son run to the store & grab some sprite, & he brought me back a flavored shaved ice from this place I love.  He had the day off, & he hung out with his sick ole mom watching movies & playing with the ferrets.   I was joking around with my son earlier today asking him what he wanted to be when he grew up, he laughed & said I don’t know, I haven’t grown up yet. lol  It got me thinking, when the kids were babies & they would go down for naps, or to bed for the evening, I would sit & type out whatever came to my mind, 15-20yrs ago I decided I wanted to write novels, I decided that I needed to really focus on my kids, I had the rest of my life to spend writing.  That is something I look back on & maybe wish I wouldn’t have waited.  To some that meet me, they might have this notion that I am selfish, snotty, & uncaring, but to those that have known me for years, know that I always put everyone else first.  I wanted to please everyone, so I put myself on the back burner alot to help someone else, that is just me.  Looking back, I wish I would have just written at night when everyone was in bed, & it was my time.  I was once told by a very wise friend that you can look back, but always move forward because what we did in the past, shaped who we are today.   I miss her a lot, she was a mother, sister, best friend all rolled into one that I had always wanted, & needed in my life.  She loved me, the kids, & hated my ex, & never missed an opportunity to let him know what a shitty person he was. lol   **raises a glass** To Lori Robeson, you are missed every single day.

Here is a video of her fav’d comedian George Carlin.  He is hilarious!!!!!

Naja, bunt sind sie nicht wirklich – aber einmal zweifarbig und dann noch zartgelb ist auf jeden Fall nicht farblos! Aber das macht die Lage nicht besser… Im Moment jedenfalls nicht. Öhmja… gestern hatte ich ja mal wieder einen Check  in der Rheumaklinik und in gegenseitigem Einvernehmen sind Doc und ich zu dem Schluss gekommen uns nun doch erstmal an  eine effektivere Medikamenteneinstellung zu wagen. Irgendwie hat sich die Schmerzsituation mit dem feuchten Herbstwetter doch zugespitzt… Und langsam war ich dann auch an dem Punkt angekommen, wo ich zähneknirschend klein beigegeben habe. Und nun tasten wir uns langsam an die richtige Dosierung heran. Klingt spannend – ist es aber nicht…

Logischerweise kann ich im Moment noch nicht viel dazu sagen, aber ich schein die Dinger zu vertragen – noch ist keine gravierende Nebenwirkung aufgetaucht, außer dass ich schrecklich müde bin. Heute laufe ich wirklich wie eine Schlaftablette durch die Gegend und bei der Physio heute morgen, bin ich auf dem Hydrojet im Nullkommanix ins Traumland abgetaucht…
Das war aber auch gemütlich und schön…!
Nur leider viel zu kurz *lach

Nun bin ich mal gespannt wie es weiter geht; würd mich auf jeden Fall echt freuen, wenn die kleinen bunten Dinger sich wirklich als “Schmerzwegwunder” entpuppen und ich nicht immer überlegen muss wie ich mich wann wo am besten bewege…

10 bis 14 Tage soll ich den Dingern aber zugestehen… Mit anderen Worten: da ist mal wieder Geduld gefragt… *seufz

Every day is like a battle against FM my legs were so stiff today that I went for a nice warm bath to relax them.

It’s now just after 3pm and the battle against my body wanting to sleep has begun, and as they say FM might win the battle but I am going to win this war.

I have taken all the tablets I’m supposed to take as well as the vitamins , I was so confident that I could go all day without a sleep but sudden tiredness is hard to fight.

I am disabled.

Wow.

I am a proud owner of a handicap placard.

Woot! Woot!

Is that how I am supposed to feel?

Yeah! I get preferred parking now when I go shopping! Hell yeah!

Let me tell you how it really goes down…

In the morning when I get up

this is how i feel…..

i wake up and

i feel tired and

in pain and

i slowly get out of bed after about 30 minutes (if i’m lucky) and

i get my laptop so i can work and

i sit down on my bed and

i start my work day and

my beautiful husband brings me coffee and toast and

i take my medication and

i drink my coffee and

i eat my toast and

by noon i am exhausted. i am already exhausted!!!

my brain can hardly focus and

i’m pretty damn frustrated because i know that it wasn’t that long ago that i was damn good at my job and seriously?

this fibro fog sucks!

i attempt to eat lunch, which these days ends up being my one real meal of the day after my toast and

then i attempt to work again and

i end up playing facebook games and

twittering and

now it’s dinner time and

i sit with the family and

i’m not hungry so we talk about our day and

after i go back to bed and

i attempt one more time to work and

again fibro fog and

again facebook games and

again twitter and

now it’s time for my night time meds and

i can’t sleep so i write my blog and

at the end of the day

this is

what i know for sure

regardless of anything else

i am blessed. i. am. blessed.

i am alive and

for today, i am able to work and

i have my family and friends to support me and

who believe in me and

i have faith.

i have faith that i will get better.

i will make myself a better person and

i will do my physical therapy and

i will eat healthy food and

i will educate people on fibromyalgia and

i will take my medication and

i will overcome this disability!

what else do i know?

if i can do this?

anyone can!

having the preferred parking ain’t what it’s cracked up to be… i’d rather walk the extra distance.

It really has been a long and stressful week – and I don’t mean because this blogging week includes two weekends!

I have a lot of family stuff going on at the moment, which is not very nice and shouldn’t ever have happened, but it has and we all just have to deal with it. Unfortunately, dealing with it brings with it a nasty fibro flare-up and very nasty acne on my back bad enough that It actually hurts to lean against anything or lie on my back (which I have been doing an awful lot in my sleep lately…) Fortunately, I think I’m over the worst of the flare-up now, but events tomorrow and at the beginning of December could well change that. Unfortunately, I am not at liberty to divulge any details at the present time, but I am sure all will become apparent (and probably public knowledge) in due course. Until that time, you’ll just have to take my word for it that things are not good. In fact, a lot worse than just “not good”. Bloody awful comes close, but I do not think any words can describe exactly what is going on with my family at the moment. Maybe I’ll try drawing something to represent how bad things are…

I have not slept properly for the last week, partly because of recent events, and partly because of the pain in my legs, which is worse than usual, but at least I have managed to get rid of the walking stick. My hands have been painful too, so I have not been able to cross stitch or knit for very long, but I have persevered and the pain in my hands has at least eased enough for me to cross stitch a bit more. The pain in my legs is not promising to ease up any time soon, so I have had to increase my pain meds for the time being. Hopefully that will help combat the pain that is starting in my shoulders and upper arms too…

Despite awful goings on, I am very happy with my home life and the wonderful relationship I have with my lovely husband. He truly is a godsend. Yesterday we went to the garden centre and bought quite a few beautiful plants for under £20 (that’s a total, not individual prices!) for our garden, including a buddleja, which I am quite excited about – it’s pink!! My lovely husband will be planting these out this week. I think the others we got were ivy and wall flowers, but I’m not too good with plants, so don’t hold me to that!

Anyway, the fibro-fog is starting to set in again now, so I will return next week with more updates. I’m sure this family stuff will sort itself out, so I’m trying not to worry about it. Too much.

I so dislike having to start over again. I can find so many reasons not to start over. That’s part of the reason I don’t mind being single and have been looking forward to my last nestling flying the coup full-time at the start of the year. At last! No one to have to think about. Just ME. If I don’t want to cook and want to eat cold sandwiches for days or cereal and milk….. no one to complain. If I’m up all night and need to sleep all day…. so what? And I would have no need to try and explain just why I do or not feel up to doing any thing. NO GUILT! But now out of the blue the ex-love of my life has shown up and has been wanting to talk and spend some time together.  {see post “Another Night…… Then What….Another Day…?” and “I’M STILL WAITING……” for more details.} I talked on the phone for a while and sort of put off seeing each other…. for some very deep seeded reasons….I have changed so very much over the last ten or so years due to illness…. I’ve even had to stop coloring my hair and I started turning gray at sixteen…lol… now totally gray, white and silver mix that I like. Just not so sure if anyone else does…. say like him. Not to mention the fact that I now spend about 80% of my time in bed. I can only do a few things at a time and that’s on my good days…lol… I’m a spooner for sure! I’m a few spoons short of a set too! But I digress, we did see each other and he was ever so kind and caring. Did feel he was uncertain how to handle all my oxygen equipment, but it didn’t seem to scare him off. He had a nice dinner set up for us and we did talk but not too much about what happened and why. I’m sure that will be soon coming. My appearance didn’t seem to scary him off….. but I did put on make up for the first time in many months…lol…So what’s the problem? We had made plans twice to go back to his home of dinner again. He has made special efforts for this meal and twice I have had to cancel. At first, no problem….. seemed to be OK about it and understanding. But now I can feel that it is wearing a little thin. I really do not think he understands just how much worse I am than before. The time I went out with him that was the first time in several months that I even made it out the door. It took me two days to get ready…lol… really….shower and shampoo in one day, left me weak and in pain. I don’t know if I even what to try this out…. even if he wants to. Lords knows I can not go through the emotional pain I went through when he broke things off. That devastated me, only in the last few months could I truly say I had not cried over that loss….. and it has been over ten years. So do I want to try and start over and begin the education process of just how my life’s day-to-day works? Will he really have the patience to learn and understand that I’m NOT playing games of payback…. but my daily activities can change abruptly…. what I could do an hour ago I may not be able to do again for weeks or three hours might be able to try again……. between FMS, Diabetes, High Blood Pressure, COPD, Sleep Apnea, Hypothyroidism, Psoriasis, Psoriatic Arthritis, my “dain bramage”{from lack of adequate oxygen levels during several severe respiratory infections} and so on my life can be very complicated when I have to take in the feelings of someone else…… someone I could come to try and care and trust again….that’s a big job on it’s own…..and the stress of this isn’t helping either…lol…. so here I go again…. or not? I’ll turn to prayer and find calm and strength….. and wish the comfort of prayer and strength for all others that live with these illnesses and find comfort until our paths cross again…. Lila

PLEASE NOTE IF YOU ARE READING THIS POST AND YOU ARE NOT AT THE WEB SITE “LILA LOST IN THE FIBRO FOG…” THEN WHAT YOU ARE READING HAS BEEN STOLEN AND IS BEING USED WITH OUT MY AUTHORITY AND I HOPE YOU WILL COME TO MY WEB SITE BLOG AT WORDPRESS http://www.lilabyrdakabirdladybyday.wordpress.com

Och inte är det roligare idag. Jävla skit.

Det blir calva idag. Och rödvin. Och handpåläggning som dövar en stund.

Det är åtminstone fredag.

One of the most challenging paradoxes for anyone suffering from arthritis, fibromyalgia, or any other similar chronic pain condition, is that physical activity is absolutely vital in maintaining your health, yet sometimes it seems nearly impossible to exercise whenever you are in pain, stiff, and dealing with severe fatigue. When you are sick and sore, getting even 5 minutes of exercise a day let alone the recommended 30-60 seems like a most challenging feat. Every piece of literature, website, or doctor will tell you that staying active and working out can increase your overall wellness, alleviate symptoms, boost immunity, and prevent further damage to the joints. However, while physical activity is essential to our overall health, it isn’t always easy. Many arthritis sufferers, including myself, laugh bitterly to themselves whenever someone says we have to exercise more — because it is so much easier said than done, at times!

I will begrudgingly admit that I personally have been struggling with body-image issues as of late. I’ve gained a few pounds and a little “puffiness” from taking Prednisone and other meds on a daily basis, and due to disabling fatigue, weekly arthritis flares, and not one but 2 chronic autoimmune illnesses that I live with every day, I have not exercised nearly enough. In fact, I’ll make a confession – aside from walking my dog a couple of times per week, I’ve barely exercised at all for the past month. I KNOW it is good for me, and I KNOW I have to. I’ll openly admit that I don’t particularly “like” exercising for the most part – but only because of the pain I endure afterwards, and sometimes during, and the fact that my body is so stiff & weak. I don’t like feeling like I “can’t” do something well. That being said, I do miss being athletic and fit, and I do want to become stronger, healthier, and more toned. I used to love my body – and now, it is the complete opposite! While I’m small & petite, I’ve lost any shred of muscle tone I once had, and it is quite a downer. I want to practice what I – and what we, at the Arthritis Foundation – preach….and that is EXERCISE! Physical activity is key for anyone, but especially those of us who have one or multiple chronic illnesses or disabilities. Also, being overweight, as some people from arthritis are due to being sedentary, can lead to further pressure on the joints, so it is best for people with arthritis to try to maintain a healthy weight. Exercise combined with diet can help you keep up with a healthy weight…and this protects your joints.

So, I decided to brainstorm some activities that those of us suffering from arthritis can do, when we are unable to get in a “regular” workout of cardio or strength training. Of course, there will be days where we physically just cannot do any sort of exercise, and that is acceptable, given the condition and its unpredictability in severity. No one expects you to run a marathon – but if you are able to, kudos to you! We all have different skill levels and ability levels of what we physically are able to do. Not only will this vary from person to person, but also from day to day for each individual living with arthritis or a related condition.

There will be days when some of us may even be well enough to go for a run, or hit the gym. But, what about the majority of our days, where we can’t get in the type of workout that a “typically” healthy person can, but also are feeling “ok” enough to at least do something to stay active and feel better about ourselves? With discipline and a positive mindset, we CAN keep our joints moving, energy levels up, and “fight the flab!”

Of course, walking is an obvious exercise for the arthritis sufferer. While it may be easier some days than others to get around, even going for a short walk down the street or around the block is better than nothing at all. To make your walks more enjoyable, take your dog, walk with a buddy, or listen to music. Or, why not bring a camera and take photos during your journeys? You do not have to go far; you do not have to jog or speed-walk. A normal walk can get the joints moving and blood flowing, which ultimately can aid in bettering our health. To REALLY give your walk some extra “oomph”, you may want to bring light hand weights, or strap on an ankle weight…or even try walking with Nordic poles! Always make sure you are wearing the proper attire and comfortable walking shoes. Make sure that you stretch beforehand, too – even if it is a short jaunt, and wear any braces or supports that may be necessary.

Aside from walking, we’ve mentioned yoga and tai-chi in past blog entries. Both are great ways to stretch and meditate while toning the muscles and increasing flexibility. The Arthritis Foundation recommends tai-chi. If you are really incapacitated, try bed yoga or chair yoga! There are special books and DVD’s about how to exercise through yoga even if you are on bed rest or in a wheelchair, and these may be options for you to look into for when you are having a particularly bad day.

Another fun way to exercise, if you’re willing to make a small investment is the gaming system Wii Fit! Wii Fit offers a variety of exercise options for all ages and skill levels. It also works with you to set and maintain goals. Included are yoga training, strength training, balance training, aerobics, and skill games, but there are other games you can buy and use with the Wii Fit board. Wii Fit gives you tips on improving posture and balance, maintaining a healthy Body Mass Index, and is just a whole lot of fun to play! Another hint for using the television to stay active in your own home is Exercise TV – Comcast OnDemand and other cable packages offer Exercise TV or versions of it. This is nice because you can pick and choose activities that are on YOUR personal ability level and do it all in the comfort of your own home! Unlike exercise DVD’s, these are free and you are not stuck with them if you do not like it. Plus, it offers a wide variety of choices for you to do.

An option that you may also want to try is water aerobics. The Arthritis Foundation offers Aqua Exercise programs, and you can also find similar programs at your local gyms, YMCA’s, or even local schools. Aqua exercise is a great, low-impact option for anyone suffering from any one of the forms of arthritis. It can really tone muscle and, swimming or treading water, like any exercise, are good for your heart. This is important because some studies have shown a link between arthritis and heart disease.

Also good for stretching and toning are resistance bands. (I personally am not very good at using these, but I do recognize their value!) The Arthritis Foundation recommends using these exercise bands, as well, so they are definitely a good option for those of us who may not be able to do free weights. Balance balls are also good to use!

If you are able to, biking is a great exercise for those of us with arthritis – and it is a great way to rehabilitate your knees! Whether it is a stationary bike or you’re going for an actual bike ride outdoors, this is a great way to keep moving & break a sweat!

I tried to think outside the box for other activities that you may be able to do, but may never have thought of, as well as some helpful exercise tips. Here are some hints:

• Do some cleaning around the house. It isn’t what one would think of as typical “exercise” but you ARE staying active and burning calories, while keeping your joints in motion.
• Ballet! Yes, ballet! You can purchase a free-standing or portable ballet barre for your home – or could even have someone make one for you! You can hold on to the barre for balance while practicing stretches and posture. If you are feeling extra-ambitious and want to get out of the house, you could even join a beginner ballet class!
• Shopping! Walking around pushing a grocery cart, just like doing household chores, can burn calories AND keep you moving. Also, if you enjoy shopping and want exercise, why not join a mall walking club?
• Bake a cake for a neighbor and hand-deliver it! Baking keeps your hands busy, and a nice walk while doing a good deed boosts your spirits and gets the blood flowing!
• Watch TV…..WHILE doing leg lifts, flexing muscles, or lifting very light hand weights!
• Go for a walking tour through your neighborhood or your city. You may learn to appreciate from a new perspective! Many cities offer landmark tours, garden tours, and sightseeing tours all on foot!
• Waltz! Why not try a ballroom dancing class with a spouse or loved one? Things like Latin dancing or Zumba may be difficult but some slower options may be great for you to try!
• Walk for a cause! Sign up for fundraising walks and 5K’s in your area that benefit a charity or a cause…..(such as our Jingle Bell Run!)
• Play with your children or grandchildren….or, a friend’s kids….this will put a smile on your face, while keeping you active!
• Find a workout buddy – some people value the solitude of “alone time” when working out, but others find that exercising with a friend makes it so much easier!

Again, I know from a personal standpoint that sometimes it is “easier said than done” to exercise when dealing with a chronic illness or physical disability, and that a person who has never dealt with these types of issues could never fully understand. Therefore, never do more than your body will allow, and always consult with a doctor before starting any type of exercise program. Do not push yourself, but even if it isn’t every single day, try to get at least some exercise in a few times per week! Not only are you strengthening and toning your muscles, but exercise also raises endorphins which alleviate stress and make you feel happy….and what could be better than that??

Please feel free to comment! We would love to hear your suggestions for exercising with arthritis. I’m personally going to set a goal to exercise at least 3-4 days a week, even if it is something as seemingly simple as walking my dog. Hopefully, you will join me in this mission for better fitness and overall wellness! I’d love to hear your stories!

For more information on the importance of physical activity, please listen to Episode 2 of Arthritis Radio with Jane Brandenstein….”Let’s Get Physical.” Also, if you are interested in signing up for our December 12^th Jingle Bell Run (a 5K Walk & Run benefiting the Arthritis Foundation, Western PA Chapter) click here for more info! For more info on our programs including Land & Water Exercise for Arthritis, click here.

Thanks for reading, and stay well!

-  Ashley Boynes

Community Development Director

Western Pennsylvania Chapter

Voted “Best Blogger in Pittsburgh”

Men fy fan vilken jävla skitdag.

I haven’t been able to post in a while. I knew this would happen. Still it has left me feeling guilty. I’m good at doing that…..I’ve had a lot of practice. Even with the shape I’m in… I still find I can kick myself around very well. Things have just been very hard of late. My ex-fiance is still calling and we went for a coffee/dinner at his place as I didn’t feel up to being out around people. It went well but still don’t know what he wants to tell me….. guess I’ll try and give him sometime. Mean while, I feel like some one beat me with a base-ball bat. I’m so tired. I hate to admit this but for the last two days I’ve been sleeping …. heck living…. on my bed without the sheets on the bed and over the feather bed…. they are clean and on my love seat at the foot of my bed, but I just can’t get them on the bed. I just hurt too much and my breathing from COPD , leaves me gasping for air and feeling like I’m going to pass out. AND that’s even with my O2 on. As much as I don’t want to say this…. I feel I must, how else will anyone understand what it is like to live with FMS and all the other illnesses that follow. Now I also have started to run a fever and dare not to go to the doctor’s office. I could get even sicker due to the exposure to all the other sick people in the waiting room. This feels like a urinary track infection, but I also dropped a glass in the kitchen {I drop a lot of things as well as trip myself up and fall too!} and it hit the hard tile floor and bounce up and cut my ankle. It probably needed a couple of stitches but it was over the week-end and again I wasn’t going into the ER…. that is twice as bad as the doctor’s office…lol….needless to say even with cleaning it and putting antibiotic cream on it, it still could be part of the problem…and it’s first of the month and bill and budget is due…. AND ALL I WANT TO DO IS CRAWL UNDER MY BED….. PUSH THE OVER GROWN DUST BUNNIES OUT OF THE WAY AND CLAIM THAT SPACE AS MY OWN! TELL THE WORLD TO GO AWAY!!  But I know I can’t….. some how I must get all this stuff done. At least every thing I need to do I can do from home…. where I can put on light weight night-clothes….. my skin even hurts right now… well I must move on…. try and rest then try doing one thing at a time and a lot of rest breaks. I’ll dream of lush green flower garden and a small brook that whispers to me as it passes….”rest your weary feet in my clear water and let me wash your worries, stress and pain away…. while the birds sing me their joyful songs as I lay on the grass and watch the clouds gently pass me by. May you find such a beauty and it cleanse you and fill you with joy, peace and comfort until our paths cross again…. Lila

PLEASE NOTE IF YOU ARE READING THIS POST AND YOU ARE NOT ON WEB SITE “LILA LOST IN THE FIBRO FOG…” THEN WHAT YOU ARE READING HAS BEEN STOLEN AND IS BEING USED WITHOUT MY AUTHORITY AND I HOPE YOU WILL COME TO MY WEB SITE BLOG AT WORDPRESS http://www.lilabyrdakabirdladybyday.wordpress.com

Förberedelser inför lördagen och de fina vännerna som skulle komma. Pyssel och planering.

Lördag kom, grå och kulen. Men ändå så varm och lysande. Det var fint.

Söndag, där tog jag slut. Ögonen rann. Jag nös som om vore jag född till det och snorade oavbrutet. Vänstra näsborren kliade i värsta allergiutbrottet och jag fantiserade om att köra upp en tandborste bara för att klia tillbaka.

Måndag tillbringade jag mer eller mindre utslagen i soffan. Näsan lite bättre men det var fortfarande den vänstra sidan som spökade. Värk i käken och tänderna efter att jag tuggat kyckling med den sidan och jag lipade i soffkudden.

Tisdag rinner ögonen så att  jag inte kan läsa ordentligt. Blinkar hela tiden och ser ut som om all världens sorger drabbat mig och jag gråtit blod. Himla sexigt. Näsan är nästan ok och det molar bara lite svagt i tänderna. Det går mot bättre tider.

Kanske onsdag blir värsta partydagen? Lillelördag och allt.