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**
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