Tag Archive | support

Feelings

Feelings. What are they? I’ll tell you what they are, they are all I can seem to discuss as of late. How I”M feeling, how OTHERS are feeling. What are YOUR pain levels? What are MY pain levels.  How many doc appointments you going to this week as opposed to me…what new med are you on? How does it make you feel? Side effects? Any relief? How bad are the adhesions ripping me apart this night or that night, how bad is my broken foot throbbing tonight, how’s the nausea? Headache? Back spasms? Left hip?  Energy levels? It’s easy really….Everything hurts worse than normal, drugs suck and so do their side effects. Fake interest in my health doesn’t help anyone. Yes, I get you have a life…one where you jump out of bed in the morning after a great nights sleep and you have a pep in your step as you brush your pearly whites and swish that Scope…check your nose for rogue boogers…grab a tasty Latte on the way to work…jamming to the latest tune…thinking about working out later…going to the Y, or maybe your work gym.  Maybe you have to stop at the store on the way home and grab some grub for dinner…zip thru the checkout lane…no problem!  You’re feeling great, your job is great, your family is great and most importantly your health is great.

This is what makes my FEELINGS seemingly very different from so many. I feel SICK. EVERYDAY. It’s not going to go away. It’s slowly killing me…I wont be making a recovery. People seem to think I should be “well” by now….”how long can this last?”  “Cant she go to a doctor? Have surgery?” How bout a bigger med center? “Maybe its the pills making her sick” “maybe she needs another medication”….or my favorites:  “She Looks GREAT! ” “I saw her out the other day…looked like she was smiling and laughing and having a good time!” “Saw her at the grocery store the other day! She was loading up that cart!”

Well, I’ve tried other doctors, Cleveland Clinic, all the moron ones here in Ft. Wayne…they all say surgery would only be done in a life or death situation, because my situation is so unusual and my insides are so scarred and twisted and glued together, and laying right at the surface, trying to find a place to even make the first cut would take a team…who couldn’t give definitive answers.  Better to just live with the pain and be glad I’m alive! I shouldn’t FEEL frustrated that the medical establishment made me this way. I should feel elated that they managed to save my life.

When I wake up, my first thought is on my belly cuz ive moved or inadvertently stretched and pulled those adhesions and they are barking back at me. I sit up and get my pill box, swallow my pills..hopin they kick in FAST.  I walk hunched over to the restroom for all that needs done there…I come out in search of coffee, but if its not alredy made…forget it…I’ll nuke some tea or have juice.  Jim starts discussing what we should have for a meal….I let him know that my FEELINGS on that subject are not registering yet.

My adhesions are growing around my other organs…it’s like an evil beast inside me….like a rubberband spiderweb. Every breath hurts, coughing, laughing and God forbid a sneeze bring on big FEELINGS. Mostly I just spew out vile cuss words that are aimed at the doctor who butchered me and his devient lawyer who got him off.  That was  a cut and dry case…and my FEELINGS on that are we were SCREWED.

My feelings on people who just do not get it. I don’t blame them. They don’t live it. How can they get it. I can see how it can be confusing to see me shopping, dressed,. make up on, hair done….I look okay….but look a little closer: My eyes are bloodshot, they are tired with no spark of life, my smile is stiff, my walk slow and now with a limp and shiny purple cane.  I walk slower, I search for places to sit and rest due to the pain that has shown up full force as i’m in the middle of Wall Mart. Im sweating profusely just due to the pain and trying to look normal like nothing is wrong.  I can’t think strait. I just want to go home to my bed. I hate this.  I hate people looking at me. I hate feeling foolish. 

I hate NEEDING help from people. I’m not good at asking fot help…other than from my husband and daughter…I ask them for lots of help around here…bet Jess can’t wait til she can move out like her big bro so she wouldn’t have to be here to have a ringside seat to my circus of FEELINGS.

I laugh, I cry, I scream, I pray, I cuss, I fall to my knees and i plead.  I plead to God, to the Angels…to anyone out there who will listen and care. After so many years of this your family and friends learn to tune you out…Its the same complaints everyday…they get sick of hearing it…I get sick of saying it. I try not to say it…but it comes up here or there…like “Hey, mom…can u drive me to the Mall today after school?” “Well, depends on how i feel I guess, but probaly” “Oh mom, you’re always sick but you can always get the job done. Which is when my Linda Blair head comes out and starts spewing that I get the jobs done cuz no one else is! I go into my laundry rant, dusting, garbage, dishes, dog hair…I let loose…but I get from one “I’m working 12 hours a day and do what I can” which I can’t argue with, I wish he didnt have to do anything but come home and veg. I get from the other one  “I’ve been being tortured at school all day with stupid teachers and I need some me time!”

I hate being asked How are you feeling today? I always say fine. No one cares how Im feeling. They get the glazed eyed look of omg, here she goes with her pain and sickness. Dont they know I would much rather be talking about going to the Y to swim! To go for a long walk thru a woods and have a pic nic. To go to a great rock concert…maybe Kid Rock or Aerosmith.  That I would love to zip thru this house and clean it from top to bottom all while blaring my Rick Springfield cd’s and reliving the 80’s!  That I would love to learn Pilates! I would be thrilled to be able to play softball once again! That I would love to sit and read a book in under three hours like i used to. That I want so badly to help others…to go to homeless shelters and help, to help abused women and children, to help save unwanted animals. I want to be there for my grandparents, parents and kids and husband for all their needs and desires. 

Right now FEELINGS are taking control. They are allover the place. Im sad. Mad. Frustrated. Pissed. Lost. Alone. Angry. Unappreciated. Scared. Hurt. Miserable. Up one minute, in the hole the next. I feel like i’ve been targeted to live in misery…its been bad since birth…when do I get to feel normal?  When do i get to experience living in a body that is perfectly healthy? Not even perfect…maybe just remove a few of my afflictions…I mean Adhesions that are taking over my abdominal cavity grabbing my organs and pulling me apart, tumors on the nerve endings from the 15 operations, loss of part of intestine and severe strictures make eating almost a miserable event, the Degenerative Disk Disease in my neck and back…constant spasms and knots, my Interstitial Cystitis where my bladder is on fire, Fibromyalgia where all my muscles and joints hurt so bad and the brain fog that tags along, the Antiphospholipid Syndrome that makes me high risk for more blood clots, so I must take blood thinners each day and keep tabs on my blood levels or I can die either from clot or internal bleeding. Anxiety problems. My teeth are getting worse by the day and the pain is bad. My eyes ache constantly, and give me migraines.  My left hip has been out of socket for a month from walking with a cane due to my right foot being broken…its taking forever to heal, and costing me  lots of medical bills.

I used to be a person. I used to have a life. I was vibrant. I was fun. I sang, danced and laughed loudly. I was good looking, I was funny and witty, I dressed well. I loved walking thru woods or graveyards. I loved swimming or just being near a body of water.  I loved going to the mall and walking around all day. I loved riding my bike. I loved trying out new exercise tapes…knowing I’d give up…but hey…it was a hope!  I have (had) a job I loved as a patient sitter, which I can’t do until my foot heals…I had a life too.

Now I’m in bed alot. With people wondering under their breaths whats wrong with me. But not really caring to know what is.  On the days I do get up dressed with make up…I’m so exhausted I must rest in between. One outting to a store knocks me back to bed for a couple more days.  I’m still inside this body. I’m in here. My feelings do count. They get hurt when I feel Ive been treated badly or been taken advantage of or lied to…or even worse patronized by people who do not know what theyre talking about when it comes to the multiple diseases I have. These diseases are life threatening. I don’t have the flu and I’m not depressed. I have multiple illnesses atleast two of which could kill me. 

So my FEELING is that Im sick. I hate it. But  I NEED friends and family who get that and who can work around my illnesses to still have relationships with me, don’t avoid me or leave me out of plans until you know Im too ill to partake. Feel free to pitch in when it looks like I need help picking up something I’ve dropped or if something needs done around the house.

I’m FEELING the only ones who understand are the other “chronics” out in cyberworld who are suffering like I am. I am lucky in that my family really tries to help me, they just sometimes don’t know what help needs done the most, or they have different ways of doing things, or they have lives of their owns and just don’t have the time to mess with my piddly problems.

My Grandma is 90. Her knees are bone on bone…its awful, and her feet are deformed from arthritis…but shes proud and she muddles around on that can or her walker a bit here and there. I call her daily, the conversation is always the same…it comes out of my mouth before I can stop it:  “How are you feeling today?” I KNOW how she’s feeling today, cuz it’s the same as yesterday…but I ask cuz I want her to know that I CARE about how she feels….so I guess thats why we ask….in some circumstances we do care how someone is feeling. But only ask if you really care and can really handle the answers.

I don’t know if I will ever feel better than i do right now, or if I will just continue to decline. I have a wish that I would find a caring doctor that was up for a challenge and could go over my rather extensive medical files…all of them, starting from having encephalitis as a child clear thru the fibro/lupus and botched surgery that really brought me down. Have him study it. To talk to me. To really care. To WANT to help me…..like the show House…he’s a doc I want! or anyone who really wanted to help people, to care about people…thats what I wish for.  A doctor who KNOWS me. KNOWS my history. Cares about my FEELINGS.

My feelings today are lonely, sad, feeling useless, fed up with pain, sick of people who are only absorbed in themselves and in seeing how much they can get, wanting, wanting, wanting, but they don’t want to work for all these wants…then have the nerve to act like their feelings are hurt or crushed, some people just don’t know how good they have it. Even i know with all my problems, I am blessed, because I know there are many others out there who are sooo much worse off than I am…so many. That is why I do try to make the most of my life…even if in a limited way…I want to find a way to help other people who actually NEED some help…Not the drama queens/kings who blow things out of proportion or lie about their conditions….nope, not them.

How am I feeling now? Well, the pain is ripping my belly in two…BUT my mind feels clear now since I purged it all out finally…My neck is in spasm and my foot is on fire. It’s another night of insomnia for me. But……………

You are certainly welcome to ask me “How you feeling lately” tomorrow! I may just tell ya!

I don’t have the energy to find pretty pics to put on here tonite or to check it over…just gonna post it.

thanks for reading and for caring, sometimes i find it interesting that the ones you want to understand you the most, are the ones who don’t take the time to know you, but that’s worked out pretty good cuz I’ve made some pretty awesome friends on here!

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A dream is a wish the heart makes:

 

 

A dream.  When I saw the topic for this blog carnival, my first instinct was, “well, I don’t think I will participate in this one, because I have no dreams.” Tonight when I was clearing out my email box, there was the email announcing the carnival again, as I had just left it in the mailbox.   I decided maybe I will try to come up with something that fits this topic.

It’s sad to be 43 years old and feel as if all your dreams have died.  Gone by the wayside.  Just drudging thru the days of your life, with no dreams to motivate you on.  But as I lay here tonight on my bed I realize I DO have a dream.  It’s what has propelled me on for the last five years.  It’s kept me going when I wondered if there was really any point in doing so.

My “dream” is to be a part of my childrens lives for many more years.  My “dream” is to have grandchildren sitting on my lap, giving me the sweetest hugs only an innocent child can give.  To be here to support my grown children as they travel the rough road of adulthood and parenthood.  To be there when they have their first baby and need to call me in the middle of the night with questions about the babys care.  To be able to spoil grandchildren with toys, candy and outtings to the zoo or circus!  To have family gatherings where we are all talking and laughing together!  Just enjoying family fun!

 

That’s it.  That’s my dream.  Somedays I feel pretty lucky to be here with my kids (grown as they may be), to be here to support them and guide them.  My dream sounds so simple, yet with the pain and physical illness I must deal with, there are many days where I doubt I will be able to obtain that dream of being around for many years, of getting to experience the birth of my first grandchild.  I have never been a dreamer.  Always a realist.  The whole “expect nothing and you won’t be disappointed” analogy.  But I AM disappointed.  That I can’t feel confident of having even the simplest of dreams.  To be with my family.  To be healthy enough to have the energy to host a gathering for my family.  To have the ability to lift a child for a huge bear hug.  To have the financial means to afford to take the family on a vacation or the afore mentioned circus even!  With the pain and extreme money problems, just these simple things are out of reach.

                                                                         (picture shown not me or any baby I know, but he’s precious!)

So, my entry may seem to be such a pessimistic and depressing one, when the title is such an optimistic and happy sounding one.  For this I apologize.  It’s not that I don’t have “wishes” I have many of those.  My heart is not dead.  I haven’t given up hope.  I have faith.  I have determination and grit. 

I WILL be here for many more years for my family!  I WILL be here for the birth of my first grandchild!  I WILL carry that granchild and lift him/her up when they fall!  I WILL be here for those middle of the night calls for advice!  I WILL have family gatherings and I WILL sit at that table and talk and laugh with my loved-ones!  These are the wishes of my heart.  I have faith that God will let me have this life that I pray for each night. 

My kids have always been my inspiration for going on.  They continue to be.  With the promise of future grandchildren giving me a warm feeling in my heart…as I have had a taste of this wonderful feeling for the last couple of years by being a “MeeMaw” to my sons wonderful girlfriends two little boys, who I have grown to love as much as if they were blood. 

I guess these wishes from my heart ARE my dream.  Maybe I do have a bit of a dreamer in there afterall.

Alone…

Been laying in bed, other than going to restroom for over two days now due to this kidney infection.  Talked to doctor offices on the phone about it.  Family doc has me on antibiotics, which I have been on one or another since last summer now.  This is the first time my kidneys have hurt like this.  The fact that I can even FEEL pain with all the opoids I take is beyond me…but my body must just love to scream out I guess.

Large View

I have an appointment with a urologist next Thursday…ONE WEEK.  If I make it that long without going to the ER, I will be so happy…but I dunno.  I do not want to go to the ER.  I do not want more damn medical bills, plus I would get there and sit out in chairs for hours, then triaged for a couple hours, left on a hard cot for hours, then there would be the whole med ordeal…whenever you are on strong pain meds, they give you “the look” and start calling docs and pharmacies to make sure you’re not a junkie…lol.

I feel like crap obviously.  Layin in bed on my heating pad constantly.  Drinking tons of water.  I got cranberry tablets, but then found out I shouldn’t overdo cranberry or cherry type juices or supplements due to my blood clotting disorder and taking bloodthinners…so, yea.  Add to the joy of me, since I do take narcotics, I am clogged up…haven’t gone in 2 weeks now…belly feels like knives are traveling around in there…all that scar tissue.  I’m taking massive quantities of Mirilax and Lactulose, with zero results so far.  Adds to the fun.

I’m feeling pretty much alone.  I have a supportive family, thank God…and some good friends…but I FEEL alone.  Thank goodness for my online friends, who also live with the same problem of pain day in and day out..they help me more than they know.  Just having a connection with someone who REALLY knows what it’s like to live life like this, helps me tolerate it a little more.  I wish they lived closer, so we could chillax together and commiserate! 😉

Every single movement brings pain in one part of my body or another.  It’s really mind boggeling if you think about it.  Move your arm…did you cringe?  Bend over…did you burst into tears?  Raise your arms to shampoo your hair… did you wince?  Take a deep breath…did you stop short in pain?  All of that and worse happens to me every time I move.  It’s a really bizarro way to live your life.

I am young.  I want to have a normal life.  I want to be physical.  I want to exercise.  To shop.  To swim.  To just BE….without all the challenges of doing it all with excruciating pain.  I hate swallowing a tub of pills everyday.  I hate the brain fog that comes with it.  I hate the negative emotions swirling in my head.  I hate hating the man that did this to me. I hate that I can not totally forgive him for making my life a living hell.

So, yea…alone.  That’s how I feel.  Even with family and friends.  I am ALONE with my pain.  MY experience with pain.  My emotional connection with the pain.  My way of dealing with the pain.  Some days I can be positive.  Some days I just can’t do it.  I can’t fake it.  I have to let it out.  I have to be grouchy and sick.  I have to be selfish and just take care of my needs for a period of time…then I can get a second wind, and be there for everyone else.  During those “down times” they just have to struggle along without my services…lol.  Sometimes I feel they would all be better off if I just was gone in some way.  I am sure it sucks to have a wife and mother who is ill.

Those of us who know pain on a real deep and personal level, are alone to a large extent…even if we were all in one room together, we each live with the pain differently.  We each feel the pain differently, emotionally and physically.  Some are stronger than others physically, some emotionally.  Some are stoic, some wear it on their sleeve…some fall in between.

Life is hard for everyone to some degree.  We all have our issues, our problems…I think maybe I “FEEL” other peoples problems more than I need to…I tend to make their problems my own in some ways.  I need to stop that, for my own preservation…stress does of course increase the bodys pain perception…stress can destroy your health.  Therefore, somedays…..being ALONE…is just what you need to be.

My prayer for today is for all my friends who are living with pain…to have some less painful days…whether alone or in a crowded house.

Thanks to all the kind readers who visit my little blog here…usually just me blatthering on about poor pitiful me…but better to put it here, then to allow it to fester in my head.

xoxoxo

Girls….

As the mother of a teen girl…I have unfortunately had to watch over the last few years how girls today treat each other.  Now of course since time began, I’m sure there has always been a certain “rivalry” between girls/women…but it seems to me that it is getting worse and worse over the last decade or so.

I can remember being a teen and looking at the other girls in my class and wishing I looked like that one or dressed like that one or had that one’s boyfriend or whatever…there is always someone who looks better than you or has better than you…that’s life.  And yes, there was always the gossip type stuff going on…”I heard Sasha was kissing Joey behind the bleachers!”

But now it’s taken on a life of it’s own.  Girls are crazy ass vicious with each other.  They are mean and vindictive.  They spread the most vile and malicious lies about each other.  They get physical with each other, they vandalize peoples property.  It is out of control.  The media is partly to blame, in my opinion…everything is sex, nudity and shows like Bad Girls Club, Jersey Shore and all the other smut crap that’s out there…these young girls are growing up thinking it’s cool to say you’re “bi sexual” or “gay/lesbian” they think it’s cool to cut other girls down or to spread lies about each other.  They travel in “packs” and go after the “weaker prey”…for what?  All to make themselves feel superior in some way? 

What this shows is that girls are lacking in self esteem and self respect.  They have lost the innocence they had right before they hit the age of 11…when they all played together and hugged each other and were all just the best of friends.  Suddenly puberty hits and they all lose their minds!  Someone gets boobs before the other and suddenly that girl is a slut!  Someone gets a cuter outfit than the other and suddenly she is a whore!  Someone spends too much time with one girl and then she is a lesbo!

Growing up in todays society as a woman is hard enough with all the crap in the media making women feel inferior to all the air-brushed models and surgically enhanced celebrities….women should be sticking together.  Supporting each other.  These girls will find out one day that their close women friends that they have will be their biggest allies in getting through life.  Friendships should be cultivated and cherished.  And they need to learn that it’s okay to have more than ONE best friend…have as many best friends as you can get!!!  We need different friends for different reasons…maybe one friend loves to shop, while another doesn’t, one friend loves to play hero guitar, another doesn’t…etc.

That movie with Lindsey Lohan…Mean Girls…was right on…in fact, it’s WORSE than that for these girls in high school.  Have you seen the news reports about these “girl fights?”  These poorly brought up girls all gang up on one and just beat the shit out of her…It is repulsive!  In one report the mother of one of the girls was right there cheering on her daughter in the fight!  My God!  What is the world coming to?

Like I said, there will always be someone who has better clothes, a better body, better skin/hair, a cuter boyfriend…whatever…get the hell over it!  Learn to love your own individual style.  You do not have to HATE another woman because you envy her!  We all have our insecurities.  Even the most beautiful woman in the world thinks her thighs are too fat!  So let’s teach our girls to love each other!  To protect each other.  To support each other.  To lean on each other.  To relate to each other, confide in each other.  Let’s stop all the backstabbing, the gossiping, the lieing, the side taking, the butchering of girls feelings.

It’s like some of these girls just have no compassion whatsoever.  They are not happy unless they are on the attack of another girl.  Do they not have any empathy for other girls feelings?  Don’t they think of how it would feel for it to be happening to them?  It is just really upsetting to me to see how girls are treating each other now-a-days.  It’s always been a competition, but it wasn’t as nasty as it is now…and the parents would’ve never put up with it or been involved, cheering it on like now.  It’s sick. 

It’s hard enough growing up in todays world.  Why rip each other apart?  Why not help each other through the maze of your high-school years?  You’re all going through the same things…the same feelings…the same insecurities…the same dreams….support each other…stop hurting each other.

“You give but little when you give of your possessions.  It is when you give of yourself that you truly give.”…Kahil Gibran.

GIVE PEACE A CHANCE!!!!  NO ONE IS BETTER THAN ANYONE ELSE!!!!  WE ARE ALL EQUAL!!!  WE ALL HAVE FEELINGS!!!  WE ALL HAVE PROBLEMS!!!  WE ALL HAVE INSECURITIES!!!  STOP THE INSANITY!!!

Thanks for taking the time to read my blog…sorry I haven’t been good about posting lately…just haven’t been very motivated.  I’m gonna try to get back into the groove!