I am such a mess and need to rant

I can already see my therapist’s face as she nods, scrunches up her eyes a bit, and quickly writes notes about me tonight.

I can already hear her saying it will all be fine, that I’m being too hard on myself, that I need more time to recover from the stress of January. That it will get easier.

I can already feel myself not believing her, or not caring.  I’m ready to call bulls**t. I don’t believe that line any more. It will only get harder, and that is my new wisdom.

I’ve been here so many times and I am fed up. I’m tired of fighting. I’m tired of trying so hard. I’m tired of being the strong one. Just for once I want to be taken care of. I don’t want to be needed.

I want to NOT hurt. I’m so done with pain.

Pain

“Pain”: I love French Pain so much more than what my post is speaking about, doesn’t it look delicious? And it will go nicely with my stew in the next paragraph. This made me laugh out loud(Photo credit: zigazou76)

Today I am going to sit and stew in all of my problems. Roll around in them and really get dirty. I think maybe, just maybe, I might feel better if I just have some time to say ouch, yes, you really are a mess. I won’t stay in it forever, but I need to own it and accept it. Maybe.

Here’s the thing, I have so much to complain about today that I could never cover it all in one hour with my therapist. So I am writing the longest post ever to get it all out at once. I know everyone will skim through and nearly faint at so many words at once, and that I am breaking every blogging rule with this long post. But I don’t want to extend this. I want to get it over with. Here it is. All of my physical problems listed in one place. Turn away now if you don’t have time for over 3000 words. There is no gold star for reading it all, and there will not be a test, and nothing inspirational here.

My spine has been hurting for 30 years now. First at age 8 from the scoliosis itself, then at age 10 from the bracing, then at age 12 from the surgery and nerve damage during the surgery, and now from the nerve damage plus arthritis, bone splinters from the fusion grafted bone deposits, and continually compressed discs from the parts of the curves they were unable to straighten near my neck and pelvis. The clamps on the rods in my back tear into my shoulder muscle. Luckily it is nearly all scar tissue now after so many years of rubbing across it, so less pain, but nearly no range of motion. Still terrible pain if I move my arm out too far too quickly and find a new spot to tear. Lately my spine feels like it is on fire. Lifting anything causes terrible stabbing pain in my bones, and crushing nerve pain in my legs and feet.

Why haven’t I seen a rheumatologist yet for the arthritis diagnosed by family doc?

1. I hate doctors.  They never listen to the whole story and push pills to get you out the door. They order expensive painful tests and then tell you, sorry, can’t help you. They treat me like I am stupid or lying or both.

2. I hate taking meds. If I say I am in pain they will tell me to take advil or aleve. If I say I do and still have pain, they may offer a stronger nsaid that rips up my belly. They may offer narcs that leave me unable to function. no thanks.

3. I hate medical bills and already have so many in collections I can’t keep track of them. enough said.

4. I am special. Not in a good way. No neurologist wants to deal with me, too much of a liability I think. They do the exam, see my dropfoot and weakness, see it was caused by a surgeon, and kindly ask me to leave. No ortho doc wants to deal with me since the original surgery was a pediatric doc. The original doc did see me at age 27, and said nothing was wrong, but he understood it would hurt. Nothing to do, except stay in shape and have strong muscles. Yes, well, nerve damage has made that tricky, sir.

My heart has been off-beating. I have mitral valve prolapse that I’m supposed to get checked yearly. Why haven’t I been to my cardiologist in 6 years then?

1. I hate doctors. He will tell me to avoid caffeine and alcohol. I need those. I need something to relieve the pain and offer me some joy in my life. A good cup of coffee and a nice cherry whiskey can get me through some very bad days. I have found an amount of caffeine that seems to not aggravate my heart by making my own half-caf mix.

2. He will offer beta blockers. I feel like a sloth in molasses on those.

3. He will want to do EKG and echocardiogram and cost us thousands of dollars to tell me it hasn’t changed much. I already know this. If it feels different I will go check it out.

4. I am special. My PTSD and anxiety work with my valve issue and play off each other. I have learned to control the tachychardia with the same breathing and focusing that I do for flashbacks. Also, just not laying on my left side helps reduce pressure on the valve. And my weak leg already guarantees I don’t take up strenuous sports or try marathon running.

I have an ovarian cyst that gives me trouble. It was first discovered at age 15, when it burst and it took 2 days of my pain that turned into fever to finally get checked out (because I paid for my own doctor trips back then or had to beg my dad to let me use his insurance and to drive me there) By that time the pelvic infection was so bad they were afraid I would have permanent scarring and be infertile. They had me checked for ectopic pregnancy which started loads of lovely days of my dad calling me a whore and making me pay him back for the treatment.

I’ve had pain every month when not on the pill, as that cyst moves or bursts. I can’t handle the pill, it causes severe headaches and depression. (That falls under the I’m special category) My last pregnancy I kept getting stabbing pains when baby would kick that cyst, but had no idea what it was, and no one investigated because it is ‘supposed’ to hurt when baby kicks. I had a monster of a cyst, oddly sausage shaped but benign, finally removed about 3 years ago after nearly passing out from a knife like pain mid cycle. I guess it grew strands of tissue and attached itself to my bowel and other innards and would pull on things that should never get pulled on. ever.

Why haven’t I been to an OB/GYN in over 4 years?

1. I hate doctors. I really hate doctors with stirrups. enough said.

2. I will not go on the pill to control a cyst.

3. I don’t want an ultrasound or another surgery. The dumb thing grew back, and I know one day will need removed again, but for now I can handle the few days of pain, and try not to twist and lift and have it pull on anything in there. And have hubby aim to the left. no problem.

4. I am special. It takes everything in me to allow a doctor near me, and to avoid flashbacks there. I went like a good girl for each pregnancy and basically became numb to it all. But now after so many years without stirrup exams, the fear is back, and I don’t want to go. Also, I secretly hope for cervical or ovarian cancer, discovered too late, because I want a ticket out of this life. (see yesterday’s post)

I get terrible, shoot me now, debilitating migraines. My first full on migraine I thought I was having a stroke. I saw funny lights, felt like a shovel removed half my brain and filled it with mud and nails. My left cheek and arm went numb and tingly. Sound and lights and motion hurt. And then the vomiting, both from the pain itself and also from the sensory overload. I did go to doctors and tried different meds for many years with little relief. Somehow I graduated college summa cum whatever with migraines so bad I would have to pull over on the side of the road and wait it out, too blinded by halos and pain to drive. I think now what I put myself through. And for what? A huge student loan I will never pay off, and a career that ended in 3 years due to my depression, stress, and trusting bureaucrats to keep track of my teaching license. I will never be able to afford to renew that license. And I don’t want to go back into the classroom anyway and train students to stop thinking and conform and answer standardized test questions. I feel sorry for current teachers, and helpless to fix a broken system. Not sure what I was thinking. I actually thought I could make a difference and make education better.

My migraines are under control I guess, since I work from home I can strap an ice pack on my head as needed. If I also take a Sudafed at onset, keep my head very cold, and lay down in a dark quiet room at some point, I can usually prevent a full blown migraine and just have a mild headache.

1. I hate doctors. They don’t believe that my ice and Sudafed method works, and that I was likely not going to get a migraine anyway.

2. migraine meds have terrible side effects, including headaches. gotta love that.

3. migraine meds are expensive. Sudafed and ice are very inexpensive.

4. I’m special. I read a lot. too much. I understand that migraines are caused by blood vessels spasms. Sudafed constricts tiny blood vessels, and the ice reduces inflammation and dulls pain receptors. I don’t go out much, so an ice pack on my head does not interfere with any fashion statement I make here at home in sweats and jammies.

My tummy is a train wreck disaster. Inside and out. The same nerve damage low in my spine that caused weakness in my leg affected parts of my tummy area. Luckily I got the type of nerve trouble that makes it difficult to evacuate bowel or bladder, and not incontinence. See? I am grateful for some things and realize it could have been worse. But I’m still going to own the suckiness of this today. I don’t know when I have to go. I don’t get the early warning signals and often rush in an emergency, usually making it on time, since again, I am usually at home. When not at home I just go often to make sure I am empty. Speaking of, since I can’t push with full strength, my bladder is often not completely emptied and I get bladder infections easily. I have found that cranberry juice or pills with lots of water help this. And of course occasional antibiotics too. The other end, I will spare you details, but just say I have to help myself to evacuate sometimes when my muscles choose not to push that day at all. Not fun. So I live in a constant state of IBS, going from one extreme to the other as my system tries to deal with mixed up nerve signals.

I have also had GERD, acid reflux, and bleeding ulcers. After years of antacids, and prescription acid reducers, I realized I need that acid for proper digestion and as part of my immune system. I got off antacids and actually starting treating myself with more acid. I took a large dose of vitamin c with every meal. And probiotics. Turns out my acid reflux was because food was not digesting quickly enough due to low acid, not high acid. Stomach won’t empty into intestines until enough digestion has happened. I no longer have chronic reflux, just occasional when I have too many wings, beer and pizza, and well, I deserved it. I am grateful I can swallow without pain.

After babies my gallbladder went funky and I couldn’t eat lettuce for years. It got better on its own just by avoiding things that irritated it. That seems to have healed now and I can eat salads again without pain! I am grateful for this, since greens are important to our health, on top of being an easy tasty lunch.

Outside my tummy is a maze of scars, from stretch marks and C-sections, and cyst removal. But that’s ok, I never was a bikini wearer even when my tummy was cute, flat and toned. But sometimes I catch sight of my tummy in the mirror and stop and stare in shock at the damage. My skin does not stretch or scar well. I still have shiny pink stripes every where, no fading, no blending. Looks like I was mauled by a tiger. Which I am grateful I was not.

I have so many allergies and sensitivities. Some things cause asthma and wheezing, like scented candles. Some scents just cause headaches and dizziness. Scented lotions or soaps cause rashes. Some adhesives cause rashes. Hell even the sun causes rashes. Finding out new allergies is not fun. I found out about the red dye allergy when my feet swelled up with red itchy welt that looked like I had been whipped across the top of me feet. The culprit? The cute new dyed leather sandals I splurged and finally let myself buy. Then it was the new hair dye with the reddish auburn tint close to my natural shade causing similar welts on my scalp. Turns out it was the same ingredient in both dyes. Soaps are usually milder than that, causing a sandpapery, scaly itchy rash. But adhesives? Ouch. They seem to melt my skin right off. I discovered this one during my heart valve diagnosis.  I had to wear a heart monitor for a month to catch the episodes. The first set of leads they gave me starting hurting in less than an hour, and by that evening had to come off, because I was oozing out from underneath them. Painful and itchy.

When kiddo was in the hospital he reacted to one of the medical tapes and the doctor asked if he had an adhesive allergy. I said I didn’t know he did, never having been covered in tape like this before. But yes, as we can both see that angry red rash appearing, I’d say he does. (I hate doctors)

The sun allergy shows up each spring. Basically I have to slowly wean myself up to full sun exposure each year after not having any for so many months. It is basically tiny raised hives every where the sun touches my skin. So those first glorious days of spring, when you just want to soak up every ray, you won’t see me out there for long. Just enough to feel the warmth, then I go back in and hide and cover up with sunscreen. Why aren’t I on treatment?

1. I hate doctors. They just tell me to eliminate whatever I have a reaction to and don’t seem bothered by the long list of eliminations. They tell me to keep my home free from dust and pet dander. I laugh.

2. I do take antihistamines nearly year round. Loratidine is the only one with minimal side effects. It does not cure, but makes allergies not as bad. All other ones I have tried put me to sleep, make me nauseous, make me stupid and foggy, give me nightmares, or make my depression worse. (antihistamines are closely related to Prozac chemically) When they get bad I use Benadryl and have a nice nap.

3. I have not had an allergy test done since I was little. I was basically told I was allergic to everything that grows and makes pollen. I believe that is still true. I have never had food allergies tested, and although I am curious, not that curious to get poked and pay for it.

4. I am special. cortisone creams do not work on me. I get a poison ivy type rash from contact with most any plant. I hire someone to mow the lawn while I stay inside with the windows shut. I hire kids to do the weeding. I gave up on gardening. I usually do put on my extremely large sun hat, a covering of sunscreen lotion, thick rubber gloves and do some yard work a few times a year. Then I come right in and shower to get it all off of me. Then I wait for the rashes. Why are you staring at your arm? I’m waiting for the rash. See? Makes life exciting.

Oh, I nearly forgot the motion sickness. I can barely spin during the hokey pokey without feeling dizzy and nauseous. I get motion sick every time I am a passenger and sometimes even when I am driving. I have thrown up on more people riding next to me than I care to admit. Tiny planes? no way – with bonine I can manage the big ones. Amusement park rides? Not amusing. Boats of any size? Impossible.

Yes I am that messed up.

Wow that felt good pouring all of that out. I feel like I forgot something, but that’s enough. I talk all about my brain on this blog, and thought my body needed some more attention. I need to complain once in a while. Not to get sympathy, so please don’t respond to this with a bunch of I’m so sorry for you. It sucks and I know it sucks. but just once in a while I need to understand that my life is hard and full of pain and own that suckiness. Not to compare to anyone else. Just to be me, all of me, even the parts I usually try to hide or ignore.

My reality is that I will continue to hurt, mentally and physically every day of my life. The arthritis will get worse, the heart valve will get worse. Menopause may cure the cyst problem, maybe that is one thing to look forward to? The kids will get older and have more serious problems. They will find drugs and sex. They will have breakups and heartaches. My genes will surely predispose them to having ulcers and migraines. I am praying they don’t get scoliosis or heart problems. Some days the worries of how they may be hurt some day overpowers me. I can’t control everything and keep them safe.

Maybe that partially explains this funk. That I was not able to prevent my kiddo’s sickness. That this won’t be the last time their lives are in danger. That I can’t keep them wrapped tight and safe in a baby sling any more. I don’t know if I am strong enough to watch them grow up. Make them do hours of pointless busy work every day, protect them from bullies and cyber threats. I can’t pay for them to go to college. I can’t help them. I don’t want to watch them struggle.

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10 thoughts on “I am such a mess and need to rant

  1. Well, I read it all…. do I get a gold star?

    I am disabled due to problems with my spine and trapped and damaged nerves, which affect my legs badly. Painkillers do little but there is a drug called Pregablin that has been a godsend. It is used to treat nerve pain and anxiety disorder (although you need to take huge dosage for that).

    Hope the therapy helped

  2. What can I say? Nothing at all to make you feel better I’m sure……….A rant is often all we need to take the edge off the really bad day though and often being listened to, without too many comments and opinions helps……..You did that!!! Well done and I hope you feel even a little better. Sounds like you’ve had, and are having a really rough ride 😦 😦 😦 My heart goes out to you and I wish you some relief with your pain (mental and physical) x

  3. I read it all, we are alike in many ways. I hate doctors also, though I suspect I am fortunate in that I have some good ones who I keep close. I am also non-compliant with pain meds, I hate them and will not take them.

    Sometimes it is good to simply own it, rant it out. Then, start looking at the individual issues and determine if there is something you can actually own. What I mean is this, are there things you can change. I have nerve damage, lots of it. I own it and there is little to nothing I can do to change the progression of it. I can however change how it affects me by how I sit in my office, the chair I use, the exercises I do. So I own it. I have epilepsy, it is adult onset and it was due to being shot and going into shock on the operating table; I own it. I refused to take the original meds they put me on, I was non-compliant. I worked with my doctor to find medication that would allow me to live my life fully without living in a fog. I did the research.

    The list goes on. One by one, I worked through the issues. Some you just say, yes it is mine and I have to live the best I can. Others you say, I refuse to accept this is the best it can be.

    I hear and feel you.

    • I have not been able to find any doctors I trust or that will listen around me. It is frustrating and expensive and I am always second guessing them. I always do the research.

      I totally understand this. Some things we must accept, and some we find ways to improve. Usually I don’t give up. Just wanted to when I wrote all that.

      Thanks for listening and sharing your side with me. xx

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