JRA/RA

i have Rheumatoid Arthritis and I’ve had it for 40+ years. Diagnosed at age 11 with JRA that went into a brief remission around age 17/18 and has been with me ever since. 

 I rarely if ever openly speak about having chronic illness. I honestly don’t feel comfortable and if I’m being completely honest people don’t feel comfortable hearing about either. I’m fairness what can they really say or do for that matter? They care, they want to help if they could but nothing they can do so I avoid the conversation all together for the most part. There are a few people I’ve learned to open up to now that I’m older. I’m grateful for them because I do at times bend there ears too much. They know who they are and although they will never see this I thank them. 

I haven’t written on here in years mainly because I’m truly not a  writer. I’d like to be but then again I’d like to be many things. I decided to write tonight because I’m tired and I need an avenue to express my thoughts so I can get them out of my head. This is so far off from my normal topics but this post is geared for that new RA patient to someone like myself that has had it almost as long as their entire life. First to the young child that has just been diagnosed life WILL be okay, you AREN'T a freak and you will accomplish anything you set your mind to. That’s the good thing about being diagnosed young. You become stronger mentally as you fight to become stronger physically.  Your determination and ability to crush obstacles become heightened. Trust me it does and it will get better. The initial shock of not being able to do things you could do not too long ago is crushing. I know, I remember. The anger I had inside me lasted for years. I wouldn’t even say the words of what I had. Hell I wouldn’t admit I had it so why say it. I hated people asking how I was feeling or how I was doing. I wanted to say how the fuck do you think I’m doing? A few months ago I was playing basketball, baseball, riding bikes doing cartwheels, backbends, front walkovers you name it. Now I’m going to doctors every week, getting needles (blood test but I’m scared of needles so being dramatic). but I hated getting blood work so much that I would start begging not to make me go days before my next appointment , driving time the appointment, in the waiting room until finally I was back in the the exam room, l didn’t go down without a fight so like clockwork I’d walk in, hide the needle and then tell my mother to take me home. Finally graduated to every other week and then to every few months and so on. I did have to see physical therapist and orthopedics because it was causing some issues in my legs and needed physical therapy from them as well and surgery on both knees. That is not common and hopefully if you were diagnosed you go to doctor no less than monthly. Bsck then things were different and all they gave you was to take 16-20 aspirin a day. Yeah crazy, right? So I was the only kid I knew with this weird illness and now drinking mylanta in my cereal for bleeding ulcers because the aspirin burned the lining of my stomach out. Hahaha. I was one bitter kid. Things have come a long way since the 70’s. Back then there weren’t many specialist like now but there were a small amount of Rheumatologist. Today I am grateful that there are pediatric doctor’s because my biggest problem with my new life was literally everyone at my doctors office was older than my grandparents. I was so angry if I had the strength to punch something believe me I would have annihilated it. So I used that anger and the want to hit people and things to motivate me to do those dumb ass exercises they had me doing 3 times a day. In the end I did get stronger but no I didn’t hit anyone but along that long road I pictured I was hitting lots of people in my mind during those exercise/PT rounds. 

I know it’s scary in the beginning and again if I’m going to be honest I still get scared. First few years were honestly like living in hell. I was so stiff and had zero range of motion,  very little muscle strength and couldn’t get in/out of chairs easily so much so most days I needed help. It hurt my wrists when I tried to lean on my hands to pull myself out of a chair so I learned to use my forearms. You learn quickly to find tricks that help you get around the only thing I couldn’t escape was in the morning the brutal pain when I tried to unbend my arms or legs. I would sit there for a while not wanting to even try. It would  either hurt like a bitch or not move so I wouldn’t want to even try. So I guess it’s easy to see why I was angry, started my day like that and then off to my mylanta and cereal and first round of aspirin and exercise. 

Things do get better honest. Medicine today actually does help and there are many out there. I take methrotrexate and infusions now. Still hate those needles and if I could still hide them I would. Doctor finally wised up and hid them on me. Hahaha 

Anyway that’s a bit of how it started and should anyone ever read this and if you are a parent of a child just diagnosed or the child looking for stuff on the internet don’t worry you are going to great. All that shit you go through makes you stronger mentally to deal with just about anything, your pain tolerance is phenomenal, the ability to adapt is amazing and you do not care about nonsense. So like I said at the start there is an upside to getting it so young. I’m not sure if I will write more but I’m hoping to. Going through a lot with it right now and that’s what brought me back to here. My plan was to write about now/today and what my life is really like. The stuff I still don’t share, the fears, the frustration, the everyone has an opinion or even better a cure, the “friends” that stop calling/think I’m exaggerating, making excuses, looking for attention. That might just be my fucking favorite one. Attention??? No I don’t want attention I want to hide, I want to be like everyone else. I’m not even like normal people with RA. A side affect is unexplained weight loss...weight loss? Not me the bigger the flare up the bigger I get. No I’m not eating gallons of ice cream etc it fills with fluids and inflammation and I’m mortified by it. Nobody really believes that, I do get those few that want to and say they do to be supportive though. I’m actually going to attach pictures to shoe what I mean. Again very sure nobody but I will be seeing this but I need to get this out of my head so I can fight again. I’m tired and I’m losing the will to fight and it’s making me sicker. It’s now into my nerves and tendons but the doctors don’t tell you the infusions etc do not help with that. I just helps with the progression of joint damage. Which is good but now I have a lot of nerve pain and damage and I’m getting angry again. Problem is I’m no longer a kid so I have to deal with my anger in a healthy way and address all the physical issues so I can  live again. I will say if you are in my shoes and are seeing this your mind is the best medicine hands down. When I was younger until recently my will was so strong for years people didn’t know anything. The days of people asking what happened because  I limped it’s are you okay what did you do to yourself were very limited if at all. Again so here in am writing about it so I can find my will, find my fight and kick ads on this shit again. I’m going to stop here and I hope I continue coming back as a form of PT (PT of the brain) so I can clear the way to focus on my will again. 

Quick note on my sideliner cherubs I’m doing well on that end. Taking pictures without fear of what anyone thinks of them. Yes they are taken by an  Amateur but they are my vision and when my vision is excited like I envisioned it I don’t care I am uneducated I’m finally happy that God gave me enough to get the job done and tripods for when I cannot hold the camera 🤙 

Hide no more

Come out of hiding I say!!

It occurred to me today, well not just today but I decided to try and do something about it today, that everyone you meet has a story. I know duh, but honestly everyone you meet during the day is most likely going through some kind of struggle. Some, of course, are worse than others but all are important. The person going through whatever is in pain. Could be physical, could be mental, perhaps both but all count. Naturally physical pain is easier to witness but what you see is not always what you get. You may only be witnessing a limp or a splint but maybe their issues are much more severe and what you are seeing is actually a side effect to a much more serious issue.

A casted arm could very well be bone cancer as could a person walking with a cane. Maybe someone just lost a loved one or is a caretaker and they are finally getting some me time. Maybe they are abused, maybe it's a sick child, maybe they are lonely or depressed, whatever the case its their story. OK, finally to my point. What occurred to me on a more personal note while thinking this morning is that my own struggles are holding me back from my dreams, my job a lot lately but most import my life. I hate every single second of having physical issues, it truly sucks. My thought is obviously I am not alone. There are so many of you out there with your own struggle and perhaps its holding you back as well.  Although I have been speaking a lot more about my issues to be honest even the closest to me don't know how bad the struggles truly are. Again, I am sure I am not alone so how about we broaden this blog to include your struggles, your fears, your sick of's and whatever else might ail you.

I haven't abandoned the sideliners becoming lifeliners but truly how can you become a true lifeliner if you have stuff holding you back. The option of being anonymous is always welcome, this way you can vent honestly however, feel free to leave your name as well.

I will start it....things I am sick of are  not being able to do the every day things in life;  such as being able to get the shampoo out of the bottle. I have to hold it against my body and use my forearm to squeeze the bottle in order to get any out, half of it winds up all over the place and I can only do this if the bottle isn't full and I can lift it. Putting on my shoes and socks, being able to get a drink because I cannot lift the containers, buttoning, holding my hair brush and being able to grasp it so that I can wrap my hair around it,  etc. you get the idea.

I hope to hear from some of you, it is so important to purge this stuff and believe me its in a place where people care and want to hear it. Don't hold back, its an important step in obtaining your lifeliner goals.

Climbing out of the abyss (again)

Ecstasy from a steamer

I admit it, I HATE being wrong but what I despise is admitting they (my family) are right. Blech that taste bad even when writing it. They claim I am a neat nut, cannot deal with things if I cannot control them, etc. I don't or well I didn't see it that way. I saw it as just liking to take care of my things, everything has a place and everything in its place and as for the control.......OK so what? I don't like when I am not in control of things or some may say I am maybe a tinch bit cranky when I am not in control. Again, so what?

Not sure why I am like this but I am. Haven't been feeling well in some time and therefore have lost bit by bit control of my things in my life, some I have learned to deal with, others I have not. There are two things that I have not learned to deal with while still being able to be pleasant. First thing is my house not being kept the way I like it and not being able to take my pictures without the use of a tripod and sometimes even with a tripod I cannot. The pictures I am coming around with, took some shots of my daughter using the tripod and didn't hate them, had a few fits during the shoot but I did admit I can get a tad bit, I mean the tiniest wee bit cranky when I am not in control.  The house I have not been able to deal with, understand I admit I may have a disorder need things in order and I like it to look like we don't live here. I know, I know already, whatever I said it out loud and now everyone (or the few readers  I have) now know it too. I put my smile on when I am not home and then come in screaming because someone didn't put something away and I don't have the strength to do it. Did I say scream? Hahaha, no, no I should have said raise my voice ever so lightly, honestly its barely noticeable asking them to please put it away. They will say its a scream and I don't ask I demand. You say potato, I say potauto.

What I have learned about myself is when things get out of order I go into a black hole or an abyss. I hate having physical struggles, yes the control thing. I hate when I need help doing every day, take for granted things. So when I am at the stage where I have to do and then watching my house, car, yard, etc not be the way I like it (my husband will say like a museum) ah NO, let's try clean, it drives me nuts. So today I am sitting in my den watching some old movies (something I enjoy very much) and I look up at a vent on the wall and I see dust in the grate and I know I can no longer enjoy my movie because the damn dust keeps mocking me. Don't roll your eyes, the damn dust is freaking mocking me. So I decide this cannot go on any longer, I have got to take my life and my house back. I MUST. So I call Bill and ask him to stop by the store on his way home from the pet store (he is a salt water fish guy) anyway, I ask him to get me a steamer. He calls me from the store to go over the different types they have. He has lived with me for many years, he knows when I say I don't care which one just get one, that means call me before you even think about bringing one home. So he calls and we go over each one and EUREKA there's the one, has all the bells and whistles and I am already beside myself with glee. I sit anxiously awaiting his arrival with my new dream. It felt like hours had passed but finally I hear the door open. I cannot contain myself, "I'm down here", I yell. He brings it down and opens the box and as each piece comes out of the box, I become more and more excited  I swear it was like Christmas morning, that's all I could say to him.

So I took my steamer and ran (well my version of running) into the downstairs bathroom and let the euphoria begin. As I mastered room by room I realized there has got to be something wrong with me that I have such pure joy over the fact that I can now clean my house the way I like over well anything. WTFrig, can my family actually be right about me? Am I a control freak? Am I a neat freak? Have I been out of control? I don't know about any of that but what I do know is as my tub began to shine, my heart lit up, when I saw the dirt come off my kitchen cabinets I began to cry.

Well dear family, I have admitted all of this in writing and to whom ever may read it and I will say it again, YOU ARE RIGHT on all accounts...except that yes you are pigs. Now be warned, no matter how I am feeling, I can clean so put your coat in the closet, take off your shoes before you walk around my house, they too, go in the closet, if you eat off it, wash it AND put it away. When you wake in the morning make your bed, dirty clothes go in the hamper, not your floor and even when put into piles on your floor this is not being organized, this is called being a slob. Basically what I am saying to you dear family is......MOMMY"S BACK!!!

Kisses and hugs.

more followers yay us

Well hot damn kids, we have 2 new followers. You know the drill, everyone say hi to our new sideliners Laura and Laura. Hiiiii Laura squared. So any hidden desires you wish to share with the group? Don't be shy ladies, you have to put it out there for it to happen.

Seriously, thanks for reading and joining in, hopefully if you do have a dream you will share and it will encourage my quiet cherubs to speak up. Thanks again, love you guys. Oh by the way, not sure what this means but my mother said some type of check is in the mail. ;) xoxo

Dash, Dots and the mystery of whats ahead

Hello my little cherubs (OK, Mom)

Its been a little while since I have posted anything but have wonderful lifeliner news that needed to be told. No, not my news but honestly I couldn't be more excited if it were. My friend entered something so outside her comfort zone I don't believe there is even an expression I can use to describe it. She, her sister, brother in law and nephew all entered, ran an conquered the warrior dash. For those of you who may not know what this is, let me explain a little bit to you. You start out running up a 3 mile ski hill, yes that is the start, then you begin obstacles courses such as going through swampy water over logs, rope walls, tire run onto old car wrecks, jump over fire, rope bridge and end the race through a mud pit that has barb-wire going over the top of it. So yes cherubs you have to swim in it. It is the sickest thing, extremely difficult and they all did it. You may be thinking they are nuts, to be honest, I did too and told her so but I have to say watching her do this didn't leaving me feeling they were nuts, it left me feeling impressed and envious. Look I'm too much of a dare I say girly, girl to go all out and swim through that water but I was so impressed. Talk about taking life by the balls and going for something. That is lifelining to the 100 power, no to the infinite power. Maybe you have to see it and to understand but I was there and I do understand.

Those are the moments I keep writing about, the things you desire deep down but don't say because you fear what people will say or worse that you just can't do it. Well, damn who the hell would have thought a year ago that this particular friend would be doing a warrior dash and kicking its warrior dash ass, I might add. had she not just bit the bullet, said it out loud and signed up she would still be wondering what if? Guess what kids, there is no what if here, there is a pride in the knowledge of doing it and being successful. It didn't matter if she finished, did one obstacle or just walked up the first hill, the winning was in the putting herself out there. Of course she did finish and she did do every single part of the race and she will now have that forever. What is even more exciting is the fact that there is more in store for this friend, although I am going to save that for another post. Congrats dear friend, I'm so proud of you!!

Not to take away from this wonderful achievement for my friend but I have to say it did make me realize that my life has been reduced to dots much like those in the coloring books we knew as children. I start out thinking nothing has changed and I can take on the world and then I start to move and realize I can no longer do the things I once did. Yeah, I know who can, right? It's a bit different for me and not sure how much I am ready to write about just yet but the mystery of whats a head for me is a bit scary. Things that recently were easy to do are becoming more difficult with each day and it pisses me off. I can no longer just go to a movie, too hard to sit there that long, take my pictures, camera is too heavy and I hate the enemy (aka tri pod). Yeah, yeah I know it takes a better picture when you use it but I like the feel of the camera and holding it the way I want to. I don't like restrictions, never have. Anyway, getting way too deep here, just trying to say no matter what you are up against, you need to find the warrior in you and keep going. I am not going to let this BS piece of shit tell me what I can and cannot do, I am going to keep going and keep trying. In the meantime I may have to give into using the enemy or watch movies at my house and cancel more dates than I actually go on but I'm here and plan on staying here until my babies and their babies no longer need me. Well, I might hang out just a little longer to annoy them with errands and diaper changes but right after that and only then will I be ready. OH and please don't think I am dying or anything here, I"M NOT, just my lifestyle. No my lifestyle is napping for a bit.

So my little darlings, go find the warrior in you and get out there and do it already. IT being whatever the hell you want it to be. I have another gallery that will be showing my pictures, so that's a start and maybe just maybe I will finish the book I am writing. Whatever the mystery that lies ahead is I hope its kind but I am buckled up and ready (even if it is in steps like the coloring book that only take me in short steps from dot to dot) The main picture is when all the dots are connected I will have something. . Let me know what you are going for so we can cheer you on.

xoxoxo

Lifeliner news.............and kudos to those that helped me get here

OK, if you are new to my blog you won't really understand the title of this post nor will you get why this is big news. My advice is to just read my very first post and hopefully that will not only explain what this particular blog is about but inspire you to conquer your dreams and hopefully if you need help either myself or somebody reading will be able to assist you. Feel free to post your dreams and any help you may need to obtain your dreams on here. This is for all of us sideliners (again need to read post one to get what this means) to become life long lifeliner.

To my news: I was accepted to a gallery in Huntington this past February. It was very exciting and I was beyond thrilled to have two of my pictures displayed. (Thank you Dad, Mom, Bill, Kevin, Nicole, Keri, Denise, Melanie, Joanie, Norma, Maryann and Julie for going to check it out), you ROCK. It was an artists choice and basically that is just an established artist picks a new artist and their work gets displayed. I felt they were charging too much for my pictures but I didn't care, the fact that they selected me and hung one up on the wall and put one in a bin was so exciting. I was one of only two artists that were invited to use more than one object so that was real exciting.

My news is that one or some (not sure yet) of my pictures I have taken over the years were selected to be in a book on Long Island. The manager of the gallery that I was in gave my name to a woman writing a book and she contacted me and from what I was just told by the gallery manager I am going to be in the book. It won't be out for at least a year (maybe longer) and I have no idea what I am getting out of it just yet. I had to share this with my 5 followers because you will understand why this is so exciting for me and I have you all to thank. I started out as I have written before Super Bowl Sunday a year ago this past January and went from just dreaming about stuff to having it actually happen for me. I didn't get here alone, this I know. My family, Denise and Melanie have pushed me and pushed me hard and I am grateful for their support but it was also putting it on here that helped. As I have said I cannot preach to other sideliners to go for it if I am not listening to those pushing me. My kids and Denise have modeled for me, something that is much harder than it sounds. Especially for Denise, this is not something she is comfortable with but did it anyway and did it for me. Thanks Denise. My girls have modeled more times then I can tell you and believe me they are put through odd modeling shoots with weird make up (Denise had to endure that too one shoot) and it takes a lot of time. So I have to thank them so much for helping me out on that. Mel, you always push me to do things, you believe in me and that means the world to me. So thanks to them and thanks to you for reading so that I am accountable.

I am working on a few book ideas I(one with Denise), one with my girls and one by myself. Not sure if any of these will actually be written and if they are what we will do with them but that is what this whole blog is about. Doing it, whatever it is. Denise, Nicole and Keri will also now being doing something important to them and I am so proud of them for signing on to their own lifeliner moment.

I hope this news will inspire you, the reader, to your own lifeliner moment, if it does, please share either on here or on my FB in a message. I love hearing all the accomplishments you have been making.

Thanks again everyone, I am blessed to have you all in my life. xoxo

Sooooo emotional

The song Landside by Fleetwood Mac is a very special song to me and also makes me extremely emotional  for a very different reason than I am using it right now. I am using it on this post for one line and only one line, "children get older and I'm getting older too".

While looking through various college qualifications, etc for my daughter, which in it of itself is emotional I found articles on one college website of my son. Articles I didn't even know existed and while reading them, I felt pride, of course, but it begin to hit me even more so than usual how fast time is going by. He graduated college 3 years ago already and my next one, my little girl is almost ready to start this chapter in her life as well. I don't know maybe the Royal wedding today isn't helping my emotional situation today. After all, I do remember the groom's parents bringing him home from the hospital. Only to be bringing home my first child a few short years behind them. How is it possible that a child born only a few years before my own could possibly be getting married?

Life is moving by so quickly and there is nothing I or anyone else can do about it. I am thankful that I thought ahead and if any of you are young mothers or possibly new grandparents, heed my advice when I tell you truly enjoy them, enjoy your children. You will have plenty of time when they are older to go out and get your "life back". Don't get me wrong, I did live while my children were growing up but I am grateful that my biggest joy was being with them. I did volunteer at their schools, made time to throw a ball, take a bike ride, color or whatever even when I didn't want to because I knew this time was going to be short lived.  There were outings with other parents I had to miss on occasion, times I wanted them to just watch t.v. or something and leave me alone but chose to play a game with them or whatever instead. Not tooting my own horn here by any means, believe me there were many things I would change if I could but cherishing their youth and my time with them is not one of  them. My youngest is a teen now and my oldest is an adult and my middle child is on the cusp of saying good bye to her childhood as well.  When and how did they grow, each day seems to drag and yet the years fly by so fast I lost track of something between those days that draged and the years that flew. What happened to all those days in between?

Anyway reading those articles on my son, made me feel something I usually keep VERY private and that is my pride for my kids. I am very big on teaching modesty and therefore try to live it. I prefer not to be one those that say, hey, so and so got a such and such or so and so got so many goals, points, A's whatever, I prefer to leave it in the home and tell them personally how proud I am and then hope for it to continue. This time however, I am going to share it only because I am feeling emotional on the thought of another child moving into the next chapter, the adult chapter. I've watched my nieces already take these steps, my son, my nephew will be taking this big step in June and then one more in the line my girl, next year. I think I am taking her being a senior and getting ready to embrace her last year of childhood way more than she is.God this is hard, I just want to braid her hair, put on her matching shoes (this was always a must with her) and take her out to one of the Long Island mansions or parks and just spend the day together. She still does entertain me with mother/daughter days but no longer needs me for shoes and hair, although the poor dear I do offer up my opinion. Why the hell us mother's always go to our daughter's hair and how it could look better is beyond me and why me of all mom's do it is even more beyond my comprehension. I know it's wrong and just plain ridiculous and yet I say geez honey why don't you put it this way or brush it that way. I know what she is thinking because I am thinking the same thing, why don't you just shut up? And honestly, why don't I already?

I guess on that note, I will do just that, shut up now. Just wanted to share my thoughts today for whatever reason. Think I just needed to purge and you lucky kids are the recipients of my breakdown. Parent's love the time while they are young, embrace  and love the journey as they grow and hang on for the adult chapter, its a hard pill to swallow (for some it might be xanax or Valium and hey I'm not mocking you but thinking of joining you); anyway the bitter pill I refer to is the one that allows them to be adults and make the decisions you know are wrong, stay up all night thinking they are dead in the gutter, no longer are at every holiday, don't always have the time to just hang out, etc but they become your best friend, your real best friend because the parenting is over. Not completely of course, I'm just saying when they are young you can't be their friend, you need to set the tone and example for when they reach this very stage. If you are lucky and they listened and life is being kind to them and them kind to their lives, now you can be their friend. It's nice because you no longer have to bark orders, simply sit and advise, just like you would do for your other friends and guess what, most times they hear you now.

I will forever long for the days where my family was young and starting out and each moment was special and new. Each new child breathed a new sense of specialness and love into our family. There is nothing like the feeling of being part of a new family from the very beginning of deciding this is your partner, to the engagement, wedding and then the first child and if you are blessed with a second,  whom you are certain and scared you can't possibly love as much as the first. That is until you feel this little one move for the first time when you are pregnant (kind of making myself a little sick with that line, don't normally talk/write like that but its so true I need to) and finally meet face to face and you find out the emotion of parental love is infinite and can be given to 1 as easily and as happily as, well, the Dugger's.

OK, really going now, going to enjoy my girls before the night is over and I say good-bye to one more of those days that get lost in the years. But not before I sweat out half the night praying that my son makes it home safe from his alumni dinner.

Thank you my cherubs for sitting through another long post that basically just goes on and on. You're the best.