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!