Pain stinks.

I’m so tired of being in pain.  Something always hurts.  Something’s always bothering me.  If it’s not a random pain in my left shoulder, preventing me from lifting it above my head, then it’s the pursing beat of my high blood pressure, pressing on  my brain.  Maybe it’s the skin covering my heart, which moves dramatically any time I bend over or lift something heavy.  Walking from the parking lot at work to my office, now leaves me winded some days.  I’m always out of breath, and I have pain.  I will see the cardiologist next week.

How did I gain back ALL 42 pounds I lost two years ago?  How’s that even possible.  And as I write these details, recalling all this frustration, a hard feeling pushes up through my throat and I feel like I’m going to choke.  I’m clenching my teeth and my fists…

Damn.  Youth really is wasted on the young.

Pain and Frustration Rant!!!

Physical “dis”/otherabilities/challenges … The mincing of words is significant.  How will I be labeled, and more importantly, how will I label myself?

I already know what I have to do, so I’m just ranting out of frustration…

My body is changing (I was going to type “falling apart” but I’ve learned better) … yes, the car accident exacerbated an already burgeoning problem, but I am just so frustrated!

I have Rheumatoid Arthritis and Chronic Pain Syndrome … that’s a bummer, indeed. It’s a diagnosis from last spring. It’s interesting only in its cruelty. I had spent 2012 getting in shape and focusing on my physical health. I lost 42 pounds, my blood pressure went down, I could run a 5K, and I was feeling myself.  I’m not ashamed to say I looked amazing! I had muscles and strength I didn’t know about and I was impressed. I was eating healthy foods and portions, and felt great!!! But there were still a few things that were just not right. When my BP started to spike (180/110) my GP started running tests and sending me to specialists… that’s when they diagnosed the RA/CPS … When I know or believe I can do something and then my body doesn’t allow it, I get upset. I didn’t realize this was happening, but my throat would tighten up, I’d get a headache, I would stop breathing (holding my breath and clenching my teeth) and that, of course, would stress me out even more!

I am NOT a person who feels comfortable asking for help… I’m just not. I know I should learn, but I am not. I am independent. I am strong-willed. I like things to be done a certain way (perfectionism), and sometimes only I can do a certain job.  When other people do things to step in, they often don’t go all the way, giving work a mere cursory treatment.  This leaves me feeling like I’ve got to go back in over their work, so I might as well have done it myself the first time!

Today I work a half day, so I get to go home early … oh wait, no I don’t. I have to pick up my car, drop off the rental (and how am I supposed to do that), make groceries, think about dinner, take my son to work, catch up on all the work I missed from the car accident, blah, blah, blah… My hub goes in late today … so he could have helped … he started saying something other than yes and I cut him off and said I would figure it out myself. (I know, I know, not everybody is an extroverted person who comes up with solutions immediately, I know, but I was MAD!!!!) While I’m sitting here typing this, he comes in and has a solution … Why didn’t you say that an hour ago instead of frustrating me so? Then he’ll be like, “Why are you up so early if you don’t teach until 8?” *side eye* BECAUSE MY BODY HURTS AND IT TAKES ME LONGER TO GET SHOWERED, DRESSED, MAKEUP, HAIR, JEWELRY, SHOES!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! TAKE NOTICE DAMMIT!!!!!!!!

I’m going to have to learn to ask for what I need and stop feeling like I have to give when I’m in pain or have nothing else to give…

Post-concussive syndrome

Went back to the ER six days later … must have a concussion because I can’t remember anything I’m being asked… and this morning I left the keys in the ignition and went ahead and walked on into my building to go to work… the security guard asked me if the lights on the car were going to go off on my car automatically and I stood there and waited for them to go off and when they didn’t I kept clicking the keys in my pocket … when that didn’t work I started to walk back over towards my car and when I opened the door the radio was on and I was like how can that be? and then I looked and the keys were in the ignition… who does that??? and why did i not realize the keys I was clicking in my pocket went to my old car not the rental!!!
The day before, I was registering my car and was asked about the color of my actual car.  I just didn’t register the question.  It did not compute.  I felt nothing in my brain at all.  The agent got frustrated and repeated the question and the second time I understood that she meant to inquire as to the color of my car.  I thought and thought and tried to remember the color.  But I couldn’t right away.  It took a bit of time and then I blurted it out as if I’d won an award for it!
Very scary.

Car accident exacerbates injuries Part 1

The one thing I really didn’t need this week was to be in a car accident.

There I was driving along minding my own business when I noticed the traffic behind me wasn’t coming to a stop after traffic in front of me had already done so.

It was cold  outside, but it wasn’t icy. There was no excuse for them not to slow down.  I managed to turn my wheel to the left to try to get out of the lane before I got hit but, it didn’t happen.  I got hit and then he got hit, and then she got hit and there were five cars in the pile up… and every time the car that hit me got hit, I got hit again…

The ambulance, fire department, and police department showed up on the scene and I allowed them to put me in a neck brace because my back and neck felt out of whack.  I could feel pain in my ankles, my wrist, my elbow, and my shoulder as well.

But alas, as the medical crew removed me from my vehicle to place me on the gurney they moaned, whined, and complained and I could feel them exchanging looks and sneering about how much I weighed…

They put that awful brace around my neck to stabilize it but whoever  designed it didn’t realize that you probably shouldn’t put metal pieces along the part that rubs against your chin…

So there I lay on a gurney out in the middle of the cold weather with metal pieces rubbing against my chin barely able to breathe, while so-called professionals are whining and complaining about having to lift me.

I’m shaking from head to toe, partly from the shock but also from the cold.  At this point I’ve already had a good cry while sitting in my car, because it’s the nicest car I’ve ever bought for myself with all the bells and whistles.  I’m imagining my financial situation preventing me from getting a rental car or from replacing the car if it’s totaled.  I’m thinking about being almost a hundred days late on my car payment and how easy it’s going to be for the finance company to just repossess it right from the auto wreck lot.  I’m imagining that the garage door opener stored in the overhead compartment, my keys which were sitting on the passenger’s seat, and my lunch which had been neatly packed in a temperature-controlled lunch box, and all the other things of convenience that I keep in my car,  might never be seen again.

I’m also thinking about the car in front of me which I managed not to hit, where ironically sat my student.. both of us were headed for  our 10 o’clock class.

The pain was radiating from my wrist and I could barely hold a thing.  And all I could think about was the pain and trouble caused by such a careless accident.

Once we got into the emergency room, finally, I had to endure yet more people having to lift me and roll me from side to side with sheets and boards and other contraptions, both in radiology and in the emergency room… I got so tired of listening to their grunts and complaints.  I was hungry and I haven’t taken my medication for the morning yet as I plan to do it at my desk as I normally do before I go to class.  And to be honest I had to pee something awful!  Although I mentioned it to the nurses 3 times, no one took me seriously until I finally said it had to be done.  One nurse suggested that I wait until the radiology had finished and then they could take my neck brace off and I could go to the restroom on my own.  This kind of made me feel like she didn’t want to do her job as a nurse… yet another slap in the face a — rejection of my body?  When the doctor came in and started doing a physical exam by pushing down on my abdomen, I  warned him that it would result in a bed full of pee.   No response.  By the third time I was much more adamant that I really had to go.  My foot was shaking and I wasn’t clear how this was going to happen.  Finally nurse ratchet went and got a bedpan. it seems like I peed for hours but when I finally finished she looked at it and said wow you really did have to go, and she proceeded to walk out of the room with my pee in her hand and I could hear someone that she almost bumped into in the doorway also making a comment about how much pee was in that pan… I felt like yelling out, “Hey quit looking at and talking about my pee!” I’m beginning to understand from that experience what it’s going to be like to be incapacitated and be serviced by nursing personnel… I had better get my legal paperwork together to be very clear how I wish to be treated and what I want done.

But the insult to end all insults came when we finally checked out and I looked at the check out paperwork.  It  said I was treated for neck pain, back pain, and … obesity!  The doctor had the nerve to list obesity as something else I had been treated for, but I hadn’t been treated for that, I had only been treated badly because of it.

I was never weighed. I was never measured. How in the world can he make such an assessment about my physical appearance?  Just on spec?  And if he was so concerned about my physical appearance, why didn’t he say anything about it to my face?  Why did he simply write it on a piece of paper and then give it to a nurse  with instructions to pass it to me, so he wouldn’t have to face me?  Coward and quack.

Shouldn’t I hold his feet to the fire? Since I didn’t receive any kind of treatment or consultation about obesity why should my insurance be billed for such?

Isn’t it bad enough that I could barely walk out of there without pain?  In fact I didn’t walk out  of there without pain!!!  I missed work all week long during the first week of the semester when I’m supposed to be getting to know my students and laying the foundation for everything they’re supposed to learn for the rest of the semester!  It was a major interruption of my life and I’m insulted and angry and still hurt about my car.  I’m worried about the additional expense that my family is going to have to incur and about the lawyers that I’m now going to have to hire in order to have all these medical bills covered!  X-rays and full body cat scans?  That’s going to be a good ten thousand dollars!

why can’t medical professionals be accountable for their actions?  now on top of everything else I need to write a letter to the CEO of the hospital and I need to call the building department and make sure that they have not coded this thing wrong.

And I can barely use my right hand… remember, chronic pain syndrome?

Seems like this week it’s chronic pain in the ass syndrome!

worst neck brace device ever invented

Car accident makes everything worse Part 2

There I was, just minding my own business, driving along on my way to a 10 a.m. class.  It was about 9:40 and I was one minute away from the college parking lot.  I slowed to accommodate the long line of cars at the stop light, all headed toward the same goal, the often unattainable hope of finding a spot which isn’t located in the mud.  As I looked in my rear view mirror, I could see the driver behind me in a large, old truck, not slowing, not stopping.  I tried my best to quickly turn the wheel and get out of the line of fire, but to no avail.  He smacked me right in the bumper, and when he was hit by the car behind him, he hit me again, and when they were hit, he hit me again, and that cycle repeated itself three times.

I’m not going to exaggerate — I was apoplectic!  Imagining the damage to the nicest new car I ever bought myself and premonitions of the total disruption of my life, led me to get out of the car, limp to the back, while yelling, cursing, and screaming, “No fucking way!  Are you fucking kidding me!???”

His car is lodged under mine

His car is lodged under mine

I took a snapshot, and then felt my neck snap … What the hell was I thinking… I got back into my car and felt the back of my body writhe in pain, sharp jabs coursing through my right side.  Ankle, knee, wrist, elbow, shoulder, neck … aching, pulsing … Shit!

I felt at once both ashamed and enraged.  What now?

That question was soon to be answered.  Ambulances, injured parties, people knocking on my car window.  A tear-filled call to the insurance company, and an attempt to reach my husband at work.  Earlier that week, he had dropped and broken his Christmas gift, a brand new smart phone, so I had to call 411 to get the number to his store … I felt terrible for cursing and crying when he called.  He kept asking me questions and I kept not knowing what to say or do.  So unlike me.  I am usually good in crisis!  I’m the friend you call when your shit falls apart, yet… I didn’t understand basic questions people asked me.  And that stressed me out and made me angrier as the day went on.

The ambulance arrived for me and the tech got in the back seat behind me and used his hands to hold my head at a certain angle.  I could no longer see my phone or purse or keys and could do nothing but sit there and watch the rubber-neckers stare.

Sitting in the car in front of me, a car which I did not hit, was one of my students.  I’d only met the class once as the semester had just started, and we’d been on a “snow day” schedule.  She remembered me, though, and tried to comfort me.  She also wanted to know if she could go… I couldn’t blame her, she needed to find a parking spot on campus.

Finally the ambulance arrived to take me away.  This would be the first time I’d ever been put in an ambulance, though I’d imagined it with dread my whole life.  After they restrained my neck with the worst-designed neck brace ever (who thought it would be a good idea to put metal pieces on the part of the brace that touches your chin?) they struggled to get my body onto the gurney.

worst neck brace device ever invented

Worst neck brace device ever invented … and yes, this is a selfie!

 

Oh please!  I can do without all the grunting and straining.  Seriously?  Have you never had to pull a large-boned person out of a car before?  Angrier.

They ask me, as my uncovered body is freezing in the wind, if I minded sharing an ambulance with another crash victim.  Seriously?  If I say yes, I better receive only HALF the bill!

Little did I know they were planning on putting me in with the guy who hit me!  And taking our physical histories in earshot of each other … So I learned he was 67 and had a stroke before and heart disease and diabetes… And he learned that I had chronic pain syndrome, Sjogren’s, and RA … Oh, the lawyers will have a good time with this!

The ambulance crew, while calling ahead to the hospital, listed him as “patient #1” and me as “patient #2.”  Is it bad that that made me mad?  I am always number one, dammit!  Why did I feel like I’d just been demoted?  Foolishness and mayhem, I confess.

Nonetheless, I stared blankly at the roof of the ambulance, the roof of the covered emergency room shelter, the roof of the hallway of the emergency room, and the hundreds of squares on the ceiling of my room.  As they rolled me through the hallways for X-rays and CT scans, I counted the squares on the ceilings, while pulling desperately at the poorly designed rim of the neck brace, gasping for air and growing more annoyed and angry as the day went on.

 

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In each room, at each juncture of the humiliation, people grunted and gossiped, talked about me as if I weren’t there, treated me as invisible, addressed me as “hon,” “sweetie,” and “sug,” and generally provided the worst, least sensitive care ever.  It was no longer early morning by the time I was being poked and prodded by the doctor, and to be honest, I had to pee.  Something awful.  I thought about it and thought about it and couldn’t stop thinking about it.  I heard every faucet and water fountain and soda can open … I really couldn’t figure out what I was going to do… I mentioned it the nurse several times, but she wouldn’t take me seriously.  Finally, the doctor, poor inexperienced thing, started to press on my abdomen and I warned him that it would not end well.  I couldn’t see his face, because of that damn neck brace, but I could feel his disgusted, frustrated vibe.  A nurse arrived with a bed pan.  I had absolutely no idea how the whole bed pan thing is supposed to work, but I had on my good black corduroy pants, my favorites, with a sharp slate blue turtleneck and matching suit jacket.  I felt SO good that morning!  And I didn’t want urine on my clothes, so I could lie around all the rest of the day smelling like a nursing home patient.  The nurse assured me that she had it.  I asked her how she was going to avoid getting my clothes wet, and she quite exasperatedly said something to the effect of, “Hon, I’ve got you down at an angle!” And she reached over enough for me to see her arm heading in a downward direction.  “You just haven’t noticed because of the neck brace.”  Yeah, that’s not the only reason I haven’t noticed, I thought.  She couldn’t get my super tight corduroy’s unbuttoned and really didn’t seem to want to try to help me pull them down, in spite of the fact that I was bound!  My arms and legs and shoulders were literally tied down to the gurney!  Ugh!  Finally, she noticed and un-restrained me.  But she didn’t make much of an effort to help me, and with all the pain in my right side, I managed to pull them down a bit.  Enough.  I let loose a wonderous and abundant flow, one which had surely never been recorded in the history of emergency medicine, or so you would have thought by the reaction she had to the full container.  It was confirmed by whomever she almost knocked over at the door trying to get out of there.  They both remarked about it and seemed quite impressed with the amount of urine I had produced.  Almost had me thinking I should feel proud of such an indubitable accomplishment, but really, all I could feel was anger.  Stop talking about my pee!

How I cleaned up after that debacle I shall spare you the details, but I can assure you, it was equally as humiliating and ludicrous.

At the end of the day, they gave me Valium and Hydrocodone.  I didn’t understand the Valium, but chalked it up to their perception of me as an angry Black woman?  I really had no idea.  When I asked, the nurse mumbled something about calming me down.  What the hell?

My husband and I left, and a nurse came running through the parking lot with my release papers, prescriptions, and instructions for care.

As I sat in the car reading it all, I noticed the last straw.  That which added insult to a full day’s worth of injury!  The doctor had written, as the reason for my visit that day, “obesity, neck strain, back strain.”

There they were.  The words that cut and kill.  How in the hell did he feel justified writing obesity as my reason for being seen that day?  And why didn’t he have the nerve to say it to my face?  Coward! Did he weigh or measure me?  Did he offer any treatment for my evident obesity?  Was he marking me as a fat woman on spec?  Engaging in fat shaming for sport?

My head hurt too much to focus on the anger boiling up inside of me.  My blood pressure in the ambulance had been something like 177/121… And I could feel it rising.

But no rest for the weary or injured, for that matter.  There are insurance adjusters, claims to be filed, rental car needed, alternative work arrangements to be made, students to be answered and warned… It was all so much, but it had to be done.  But I was fading.  Fading under the strength of the prescription meds.  I would have to wake another day to deal with the shame and anger of my experience that day.

Living with Sjogrens, Rheumatoid Arthritis, and General Aging

Every day it’s something new … Today, I am not able to hold my tea cup and saucer in my right hand … and I’m right-handed.  Today I walked up the three steps to my front door with both feet on each step before moving up … as my neighbor stared quizzically … Today I finally told my two sons about my diagnosis, because I’m worried about losing their respect, and because I need their help.

With Sjogren’s Syndrome and Rheumatoid Arthritis, there are good days and bad… On good days, I don’t notice the pain so much, I don’t obsess over it, or think about all the things I cannot do that day… I don’t wonder if my kids will think of me as lazy, or if my friends have forgotten me because I haven’t been around as much … I’ve been in bed or on the couch … gaining weight and feeling bad.

ImageOn bad days, I ache.  A couple of days ago, I noticed hardened bumps on the joints of my index fingers that make my hands look like the stereotypical picture of a wicked witch (pardons from all my Wicca friends and real witches.)  I happened to notice when I took a picture of my nail polish on one frivolous-feeling day and uploaded it to a Facebook site with lots of sister girlfriends on it…I had to do a double-take when I checked my status!  Could those be my hands or are those the hands of a strange, elderly woman who’s worked too hard and scrubbed too many dishes in her life?

I was diagnosed with Sjogren’s Syndrome (Chronic Pain) and Degenerative Joint Disease (Rheumatoid Arthritis) in early 2013… and thank goodness, actually … My body had been falling apart and I couldn’t figure out why.  My blood pressure and cholesterol had been on the rise since 2008, when I started teaching full time at a small college… The job that I had so enjoyed as an adjunct professor, had become unbearable, bullying, and at times, violent and the stress was becoming unmanageable through traditional methods … My life has been about struggle, so I chalked it up to just another … but this college, this place was strange … I had never encountered such resistance to progression … such vitriol towards any and all things new or different … it was ugly and it was racial.  But I’d dealt with this before in many parts of my life.  This is not new… why now?  Why is my body responding so negatively now?  My doctor started me on a regimen of pills… I was abhorred!  Pills?  So I refused to take them for six months… then I saw her again, and my blood pressure was very, very high.  She warned me that this is serious and I left her office and filled the prescriptions.

The weight began to pile on … I hardly noticed, until one day I did.  I had ballooned to 242 pounds.  I can’t believe I just typed that.  Two hundred forty two pounds.  When I finally couldn’t take the weight gain any more, and stopping the medication was a no-go, my doctor helped me out.  In 2011-12, I lost 42 pounds, and I hadn’t felt, or looked, that good, for a long time…Image

I used the Spark People program, and it really worked for me… I needed the support and camaraderie the site provides…  So it seemed to reason that losing weight was supposed to help my body feel better, not worse.

But my journey into weight loss is accompanied by a constantly financially-burdened life … In spite of extraordinary intelligence (I’m not bragging, I’ve really just learned to come to terms with it), hard work, incredible opportunities, and the will to do better, I have not accomplished anywhere near my potential, and feel constantly disappointed in that fact.  Coupled with these new physical challenges, it overwhelming at times, and I feel a lump rise in my throat, chest tightens, shoulders rise …

This disease requires me to change the essence of the way I see myself, and as I’m learning, the way others see me as well… I am not accustomed to playing what medical sociologists refer to as the “sick role” … I graduated with honors from Stanford University with two degrees in five years, all while diagnosed with a brain tumor, working two jobs, and completing the requirements for my commission in the U.S. Air Force!  Image

Surely, I can make it to and from the kitchen while holding a full tea cup and a saucer?  But no, I cannot always do that.  I am learning how to live with Sjogren’s, because it isn’t going to learn to adjust to my previous lifestyle.  Opening doors with doorknobs, a no-go.  Running from one end of the neighborhood to the other (which I had finally accomplished during the weight-loss period of my journey) a no-go.  Zumba for one hour a day, four days a week… a no-go.  Simply washing all the parts of my body with only my right hand … nope, not any more…

That brings me to my last point for today’s first blog … I have never told a soul … I have anxiety … high stress (which is now accompanied by high blood pressure — just add a few more pills to my ever-tightening pill box!) … and I’ve been prescribed an anti-anxiety pill… True confessions? Yes, because I can hardly believe I’ve typed these words … I am not the one to be sick! (Today was the first day I spoke it out loud: “I am sick.”)  A mental disorder like anxiety?  I have always been high energy, high accomplishing, high fun, highly motivated, high achieving me.  Last semester, I actually had to take time off of my job (gasp!!!) to sit down and relax at home… This makes no sense to me.  I cannot compute.  Leave work early?  I’m that employee who always has an abundance of sick leave hours to donate to whomever is ill and out of hours … I’m the person who rarely takes vacation days (how can anyone ever afford to do that when there’s so much to be done at work?!)  There’s always another essay to grade, another assignment to create, another video to review, another blog to write…But my body was telling me another story: Blood Pressure 180/130 … Time to stop.  Time to slow down.  Time to accept.

This blog is about that journey to stop, slow down, and accept.  I’m a new grandmother, and I want to be healthy for that beautiful baby boy…

I want to document my struggle, because it’s in the documenting, that I come to terms with my own pain and disappointment, my fears for the future, and my successes as I master the challenges headed my way.

I don’t know if anyone’s reading along, but if so, I hope you will join me, and I hope you will find comfort and understanding in my journey.  I would be so happy if you shared your stories as well, and I wish us happiness and acceptance, but above all, health!

Yours in peace and understanding,

Kimbo

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