Wednesday, November 27, 2013

Trying to be brave enough to tell it how it is....bear with me my peeps.

Hi Guys,

Well I gotta admit the title is not very inviting for this post......LOL.  Yeah I am had a rough day.  A lot of times when it comes to getting my feelings out I have a hard time writing or talking about the pain part of my Lupus.  Some of that is because I REALLY hate making people uncomfortable.  And some people wont understand this part, but being in a wheelchair and being deaf REALLY makes some people uncomfortable, let alone talking about the pain that comes with some of this, so I don't talk about it much if at all.  Now some will ask...."Bobbi...if you don't want pity then why in the devil are you writing about this in your blog". Good question my friend.  Because I know in my heart that there are others out there JUST like me.  Who are in pain all day everyday.  Who hide the pain and frustration away from everyone else because it is easier for the people around them.  Because they think that if they show weakness that those around them will treat them like the "poor little person with disabilities".  I will guarantee you 99% of people with disabilities (myself included) DESPISE this label with a PASSION.  So we don't talk or let on about this part of our lives.  But it is there.  There are days where we just are not as strong as we usually are.  So the reason I am putting this out there is because I think we all have moments of weakness......and it is important for others that go through the same thing or worse than I have it to know that HEY you are NOT alone.  You are NOT in this alone. There is someone else out there that KNOWS what it is like.  And it is not shameful in any way to let it out and cry.  So.....bear with me please and know that I am just venting because I am hurting, I am frustrated, and it is EXTREMELY hard for me to put myself all out there like this.  BUT make no mistake about it, while I may be in a teary, mopey, fed-up moment right now......this is NOT an indicator of my strength or weakness as a person.  And anyone brave enough to say something like that to me had better have ate their Wheaties this mornin cause I will beat the livin crap outta you and then go have my coffee and think nothin of it.  (told you I am in a weird place right now).    Soooooo......here goes.

Today has been really hard **teary**.  I am sick and tired of hurting all the time.  I crave a good nights sleep without pain.  I am fed up with the fear that when I have a weak day that everyone is thinking "well besides the wheelchair and cochlear implants you LOOK fine.....so what is wrong with you....are you just a whiny butt?"  I OMG try to be strong most of the time.....in a lot of areas I try to be the strong one and usually I can pull it off.  My knees, my elbows, my ankles, my wrists, the little joints in my fingers, the flippin joints in my toes.....something(s) is always hurting.  Medicine helps take the "edge" off, but it NEVER goes away completely.  NEVER.  I want to be able to let my kids jump up on the couch with me, without having to ever so GINGERLY position them where it doesn't hurt as bad.  I'm not asking for a lifetime.....one day.....ONE FLIPPIN DAY.  To take the dog out to go pee and not be in tears for the next 2 hours.  I'm not asking for a million dollars.....heck I'm not even asking for the ability to walk correctly or to be able to hear without my cochlear implants......ONE DAY without pain.  Not lesser pain....NO PAIN.  To be able to look at people in the eye and know in my heart that I am not trying to hide the fact that I hurt.  Is that really too much for a gal to ask.  SERIOUSLY.  ONE DAY with no pain medicine......O N E D A Y. 24 hours.  Just one day.  To not to have to put on my strong face.....for ONE DAY.   This sounds stupid... but for one day to feel like I am not putting on an act.....To not have to "act" normal......but to ACTUALLY BE normal. One day.  24 hour period of time.  I mean good GRIEF for the love of PEARL.  I'm tired of the hurtin.

I'm tired of having the feeling that I have to prove myself everyday to everyone.  I'm tired of people assuming that I cannot do things because of my limitations.  I am fed up with the notion that my kids must have it rough because they help around the house.  OMG REALLY COME ON PEOPLE.  Don't your kids have chores? How the devil is that any different??  But Bobbi they also "translate" for you too......how is that fair to them.  REALLY.....you REALLY wanna come at me with THAT.  Yes, my kids WILL translate in public for me IF I cannot understand someone.  But Bobbi....when they translate...sometimes they don't use sign....they just repeat what I said.....isn't that stupid?   WELL DUH DINGBAT........we use sign AND we ALL lipread.  I have been lipreading my children since they were able to talk.  YOU on the other hand are someone I don't lipread everyday.  YOU may have a mustache (which sometimes makes things interesting). You may have an accent (and yes that sometimes comes into play when you are lipreading).   My kids understand the fact that you cannot MUMBLE....turn away mid-sentence, nor can you EXAGGERATE YOUR WORDS (by the way, deaf people CAN tell when you are YELLING.....your face changes in ways that you are NOT aware of).  They know that some word read the EXACT SAME and if I cannot read the rest of what you are saying then it doesn't come across right (for example.....garbage and cabbage lipread the EXACT same)....the ONLY way to know the difference is to be able to understand the rest of the sentence and take that into context.  WOW I get to teach my kids lessons in patience and tolerance because I ALLOW them to translate for me.  Are you teaching yours the same?  Is it fair for me to make assumptions about that based on the limited amount of time I spend with you?  OH BOBBI THAT IS NOT FAIR to turn this back on me......deal with it.  But Bobbi.....your kids can lipread and can do it from a distance....they caught an adult saying something that wasn't ment for them....that is RUDE.  Well bless your little pea pickin soul.  I bet you have NEVER overHEARD something that was not ment for you.  This is NO DIFFERENT.  It is NOT something they are setting out to do.  You see while most mama's tell their kids to look them in the eye when they speak, I taught my kids from an EARLY age to look at my LIPS.  Lupus is hereditary.  If God forbid one of my babies lose their hearing they will have one step up to help them through.....so go suck on an egg.  And you WILL NOT get them in trouble for lipreading or signing while they are speaking.  Now one exemption where I will get onto them is IF they eavesdrop on purpose, just like you would get onto your kid if they were to overhear something when they are eavesdropping.  This may not be the "norm" for your family......but I don't judge your family for your little quirks and I demand that same respect.  I am tired of having to explain to my kids that there are IDIOTS out there that judge anything that they themselves don't understand.  But bet your bottom dollar MY kids will NOT be one of those ignorant people.  I raise my kids to understand that just because something or someone is different that doesn't necessarily mean that it or the person is bad......sometimes it is just different.  I am tired of having to explain to my kids that some ADULTS are IGNORANT and have never learned the meaning of TOLERANCE nor have they learned to embrace the differences in the world an see BEAUTY instead of lashing out in hate because they do not understand and in some cases do not WANT to understand.

I am tired of everyone in society thinking I am rude when I as nicely as I can point out.....ummmm hey you parked in front of the ramp, and I cannot get into where I need to go.  Or when some IDIOT parks in the "loading" part of a handicapped parking spot (the yellow or blue lines that are to the sides of handicapped parking spaces).  OMG here a few weeks ago an older lady did that to me.  She did NOT have a handicapped placard nor did she have a handicapped license plate.  We were at a grocery store and they also have a restaurant.  It was lunch hour and I had a rough morning of errands cause everybody and their brother was in town that day.  And there were quite a lot of people around when this happened.  I rolled down my window and said "I'm sorry ma'am but you are parked in a handicapped loading zone and I cannot get out of my vehicle correctly."  She YELLED in front of God and everyone "you are young and don't need to be parking there anyway.......you need to respect your elders and I am going to get lunch."  As I said the place was PACKED and all the other handicapped spots were taken.  PFFFFFT ok I had had it.  So I proceeded to unload my chair as best I could.  Well.....I have a minivan....and we have it set up where I can load and unload my chair by myself.  But when I do my chair swings WIDE when i bring it up to the door so I can transfer over.  OMG I honest to goodness didn't MEAN to do this.  But when it swung wide it scratched the whole side of her vehicle.  I mean a DEEEEEEEEEEEP scratch.  OMG she came a running in front of everyone....."OMG I WANT YOUR INSURANCE INFORMATION....YOU ARE GONNA PAY FOR THAT".   So I said in the nicest voice I could and so all around could hear....."Sounds great.....lets call the cops, you my dear are parked illegally and I asked nicely.......and I have a sidewalk full of witnesses...wanna use my phone? "  :)  And as I rolled into the store I saw more than one person giggling. Now I am normally NOT a vindictive person.  If you know me you know I go out of my way to avoid confrontation, and I always feel the need to make people around me comfortable.  I will usually bite the bullet even if it inconveniences me or causes me hardship.  But this lady (and I use that term lightly here cause that is a term of respect....and the only respect I owed this woman was the "elder" respect shown to all those older than me).......this lady just pushed it too far.  And who knows who she would have tried this with next.

OMG WOW.   That felt soooooo good to get out.  Please know that if you are a first timer reading my blog that this is NOT the norm for me.  LOL.....usually I am a live and let live type of person.  You say potato...I say french fries.  LOL.    But today I really needed to just let it out.  Now if you are one of those people that are going to make judgements......then all I have to say to you is unless you have rolled in my wheels......you have no right and you are welcome to leave and don't let the door hit ya where the Good Lord split ya. But, if by taking a risk and putting myself out there this helps just ONE person to know that that they are not alone in what they are feeling and going through then I have no problem swallowing my pride and putting it all out there on the line.  I would like to thank each and every one of you for listening.  **smoochies**

Sunday, November 24, 2013

WOW I Have Missed You Guys...Gettin Back Into The Blog.

Hi Guys,

WOW I have really missed talking to all of you.  The summer totally got away from me, and I have neglected writing my thoughts down.  I sincerely apologize for this and I am actively getting back into the swing of writing in my blog here.  So much has happened that I really don't know where to begin, but like always we will all grab a cuppa coffee and bounce from one subject to the next......LOL.  Not sure what "style" of writing that is called, but it works for us and ya'll get what I'm trying to say so lets just keep doin what works.

Last time we got to chat I was working an at home part-time job.  Since then I have realized that I cannot physically keep up on my duties as a mommy and wife and work in a management position.  We decided as a family (kids included) that it would be best for everyone if I focus on being mom and wife at this point in my life.  Now there are some out there that do not agree with that decision.  In this day and age most people view stay at home parents (mommy's or daddy's) as "lazy".  This is a stereotype that I find very unfair on so many levels.  For a LOOOOOONG time I put stock in the notion that for me to personally feel like I make a contribution to my household and society in general that I had to be "earning" some type of income.  And please don't take this next part as arrogance, but I took great pride in the work that I did (cause that was one of the very few things that I knew I did very well).  I have ALWAYS loved computers.  Research and data entry are both passions of mine.  For a long time I was in a management position and I truly loved helping the people on my team be the best that they could be.  And my job allowed me to work in the shadows (which if you don't already know, I love working in the background.......being in the limelight is NOT my thingie......and I go to great lengths to keep myself in the background if possible).  Everything from communications to the actual research was all handled online.  No one could see my limitations in any way, they didn't see my chair nor did my deafness hinder me in any way in this unique environment.  To my team I was just Ms. Bobbi.....the one to go to if they had a question, needed some help, or just simply needed someone there to listen to them vent.  I must say I truly loved that part of my job.....the being there for my team.  But as things have progressed with my Lupus I began to notice that I just could not keep up with home and work.  And this became a source of major stress in my life for a long time.  In my mind it was like the world was saying to me "most all other women work and take care of their families and homes, if you cannot handle both then you are less of a woman.......don't you holler at the top of your lungs that you are equal to able bodied women out there.....and yet you cannot manage a job and home and family".  But I have come to realize that this notion is an incredibly unfair judgement on my part.  I have limitations........like it or not......they are there.  And by allowing myself to think like this basically makes me a hypocrite.  Think about it.......you have all heard me say that it is unfair to judge another person.  Everyone is different......different strengths and weaknesses....different battles in life.......these are things that no one has a right to judge.  And yet that is just what I was doing to myself (which can sometimes cause more harm than if it was coming from another person).  At this point in my life I cannot juggle work and home.......and you know what....that is ok.  This fact does not in anyway make me lazy or less of a woman.  Now don't get me wrong.....I will still do everything in my power to do most everything that a normal able-bodied person can do.  Might look funny....and may take a bit longer to accomplish things, but if I can do it believe me my peeps I WILL do it.  But I guess what I am trying to say is I am coming to the realization that Yes.....there are somethings that I cannot do.......does this make me lazy, worthless, and unlovable?.......No, this makes me human.  And sometimes I need to take my own advise and cut myself just a bit of slack.

On a lighter note, this next week is THANKSGIVING.......WOOOOOHOOOOOOOO.  LOL yes I love Thanksgiving.  My family is having theirs on Thanksgiving day.  Not sure when we are gonna have Jay's side of the family's Thanksgiving yet (his middle brother works out of town.....like a couple hours away outta town and he hasta work the day after......so we are kinda waitin to see when everyone can get together).  I love it when we can all be out at my in-laws at the same time.  Jay has 2 brothers and they all have wives and kids.   Well......me and my 2 sister-in-law's were pregnant at the same time so Toby and 2 of his cousins were all born within a 6 month time frame (one in June, one in September, and one in October).  It is SO fun to watch them play together.  With everyone having families and work and just normal everyday life it is hard for us all to get together under the same roof all at the same time......LOL.  I wish we could all see everyone more often.  I also hope to come out of my shell a bit more at family functions.  Ok THAT might need some explaining.....LOL.  I am NOT very good in crowds.  For me, anything more than 3 people is a crowd.  And when I get in crowds.......even with my cochlear implants it is next to impossible to follow conversations.  My "go-to" reaction is to find the nearest corner and catch what I can from that "background" position.  I thought that was just a "me" thing, but I have recently learned from some of my friends that are deaf also that this is a very normal thing for deaf people.  You see blindness cuts you off from "things" (meaning while you cannot see "things" you can still interact with people fairly easily cause you can still hear and engage in conversation with people).  Deafness cuts you off from "people" (because while you can see everything in your environment, it is harder to communicate).  And I have this fear that I will come off as rude or impersonal.......so my reaction to that is to find my background position.....to avoid making anyone feel uncomfortable.  I have realized this is very unfair to my family (both on my side and on Jay's side).  And I am determined to correct this and become a more active member in my family (and not just the fly on the wall).  I regret missing all the things that I have in my family.  I want to be an active part of my family, not just someone that is "there".

Yesterday was the first day of shot-gun deer season here in Illinois.  Jay OMG OMG O M G LOOOOOOOOOOOOVES hunting.....LOL.  Me.....ummmmmm......well......I like to shoot guns on the range.....and I like to help Jay process deer meat when he gets a deer.  But the actual "hunting" part.....that's Jay's thingie.  I love watching him get ready to go out hunting.  He gets so excited and just absolutely loves being out in the woods.  Josie doesn't like it so much cause on hunting days daddy is gone for most of the day......LOL yes she is a Daddy's Girl.  But I told her.....you know how each girl has their own "thing".....like me and you and going to the salon and getting our nails done.  Daddy and Bub wait patiently for us to do our thing.  Well that is what hunting is to daddy (and the way Toby talks is gonna be his thing too).  You gotta let the fellers have their "thing".  LOL....she said "well.....when you put it like that I really cannot get mad can I". LOL.  I felt so bad for Jay today though.  It only got up to like 22 degrees here but with wind chill it felt like it was 10 degrees.  Everyone that was up at deer camp was havin problems staying warm.  Even with the "hot hands" warmers they were all FREEZING (and that is sayin somethin when they all are havin problems with that cause these are not just fly by night hunters....these guys are VERY passionate about hunting so for them to be saying something about the cold...........that tells me A LOT).  And with it being this cold the deer just weren't moving at all.  It wouldn't have been so bad on that front if the wind was a bit calmer, but when the wind kicks up like that and it is this cold.....the deer tend to "bed down".

Well......here it is 2:30 in the morning and we are still gabbin.....LOL.  Not sure why I brought that up, but I am hurtin anyway and not gonna sleep, so we might as well keep each other company.  I don't know about you, but this blog really helps me get everything out.  And now that I have a bit more time we should be able to talk more often :)

OH, back on the Thanksgiving topic for a min.  The day after Thanksgiving we are headin a couple hours south to spend the weekend with our friends.  I call our group "the gang".....LOL.  This consists of mutual friends from Chicago, and Carbondale.  We are all getting together next weekend for "the gang's Thanksgiving".  OMG I love all these peeps.  They are smart, funny, and when I am with this group the "group fear" that I have melts away very quickly.  Yes they make me feel THAT at ease (which trust me is a MAJOR thing......cause with any other "group" I automatically go into my shell).  We all haven't been able to get together in quite a loooooong time, so it is gonna be OMG SO FLIPPIN AWESOME to see everyone. These peeps knew me before my mobility problems.  After I started using a wheelchair a lot of peeps that I knew started to shy away from me (because admit it.......it is uncomfortable to see someone that you know go from being able to get around like everyone else to suddenly seeing that person have difficulty in that same area).  But this didn't phase "the gang" at all.  They treated me just as they always have, and that right there means the WORLD to me.  I have dubbed in my mind the Chicago peeps as my "Christmas Angels".  Last year they knew that I was having problems getting around and they showed up on my doorstep outta the blue with a power chair.  OMG I am still not sure if they realize what that ment for me, but after they left I cried for an hour because they gave me the freedom to not only go outside with my family, but also the ability to work around my home.  When they came my house was an absolute wreck because I really could not "hobble" around the house and clean at the same time (cause I would fall OMG A LOT......I still fall, but not as much as when I didn't have my power chair).  Within 24 hours of my angels bringing me my power chair my home was SPOTLESS.  I mean in a way that it had not been since the mobility issues started.  And to top it off.....they still treat me the same as they did before all this happened.  They joke around, talk, tease, laugh, smart-off and talk just like before.  When I start to go into my shell, someone will say something to me and get me right back outta it.  Guys, I may not say it often enough, but know that you guys mean the world to me......each and every one of you.

Weeeeeeeeeeell........it is 3am......Jay is sacked out on the couch and the kids have LONG been in bed.  All my 4-legged peeps are surrounding me here on the couch sleepin and even though I am still hurtin it might be best for me to TRY to lay down and sleep.  Thank you guys SO very much for listening to me.  It means the world to be able to talk freely and just get it all out there.  I luv ya.  **smoooooochies**