Dear Windy.. UC is not my friend.

 

Dear Windy,

Please escape out the front door.

I’ve left it open for you.

You always sneak out the back.

But there obvious signs that can’t be hidden

The draft still lingers from your escape.

The smell of air can’t be extinguished.

The melted layers of my nasal cavity can’t be regrown.

The damage is done.

It’s not forgotten.

Love, Me

 

Dear Windy,

I thought we had an understanding?

I’ve think I’ve had enough of you!

People are starting to talk.

I don’t know what to do.

 

I don’t want to leave my house anymore.

The gurgling’s vamped up

I can’t get through a meal no more

No friends won’t come to sup

 

DM 11/20/2014

All Too Soon

I think I’m in shock

I do not feel

I was told of their deaths

It’s just not real

 

I sit in a fog

I look and wait

They’ll be back

They’re just running late

 

I look to the door

I listen for the sound

What’s taking so long

My heads starting to pound

 

The anxiety is building

I’m feeling sick

Where the hell are they

Please get back quick

 

The pit is growing

Overcome by despair

As my senses wake up

I become aware

 

DM 3/8/2015

Frustrated Ramblings once again..

I’m tired of dying every day and being uncomfortable in my own skin. Of watching the light fade from my children’s eyes as another mention of “not right now” whispers through their ears and the ensuing frustration and defeat that washes upon their faces… my kids need me now. My hubby needs me now. My mother needs me now. My family needs me now. Tomorrow might not get here and time flies, moments pass, needs go unfulfilled looking for outlets and something to fill the void from avenues best left discarded.

I remember those times. My children are there now and yet I’m here, I see, I know, but I’m not present and I see this being fulfilled while my body falls apart and my mind wants to spiral. To be so dependent on a stinking little pill to wash away the pain and fatigue yet such controversy on something so tiny that gives me life in a way few will understand. No high needed or received, just relief, blessed relief from the torture my body inflicts upon me. Some days, not near enough,  leaving me so despondent, I rather wither away and free my family from the burden I feel I’ve become.

The negative thoughts and heavy weights weighing them down like a chain around their necks in a sinking ship lost at sea. To free them. To free myself. To put an end to the drain on this life and allow healing to begin and forward movement on their own journeys this life will bring. May they never be saddled with these illnesses that grip me so tightly, squeezing the life out of me. But it’s heritable. It’s the gift that never seems to end. One generation to the next. My burden, my cross to bear laid upon the shoulders of my tender children and the guilt that consumes me because of it. My fault.

EDS? Could it really be??

Almost 20 years and I think I finally solved the mystery of me. My life, health issues, falling apart so young. Why joining the military screwed me up physically and I’ve never been the same. I never bothered to researched genetic diseases. As far as I knew, my parents and grandparents were healthy mobile individuals with very little in the way of health issues so it couldn’t be that…..

Then my Rheumatologist told me I was hypermobile. I figured as much since my knees always felt like they would ‘fall off’ which is the only way I could describe the feeling. They feel loose and God forbid anyone touch my knees. They can be painful and even touch can flare them up. No pressure on them even with clothing having to be loose enough and never a knee brace that covers the patella.

I thought it was normal to wash my own back. I thought it was cool that I could push my thumb over and squeeze my hands out of handcuffs. Neat trick. Or move them from behind my back to in front. I thought it was sneaky cool. I could do the side splits and I was very very flexible. And then my pain management doctor told me he’d never seen someone in as many odd positions as he’s seen me in. To me I was just trying to be comfortable. Normal is not comfortable to me. Criss cross apple sauce or other pretzel like positions…

Then my new physical therapist came to my home and asked me straight out if I had Ehlers-danlos… Hmmm. I’d read about it though never intently, I only knew they were hypermobile…. So I researched it via Dr. Google and my jaw dropped my heart pounded and a light bulb went on. Everything from my hypermobility to hernia’s, prolapses, and POT syndrome… It fit. Wow did it fit.

I’ve since asked some relatives about it and no one had even heard about it but we did have a few family members die suddenly of an aneurysm… yikes. Blood clotting issues run in my family as well. Off to the geneticist for official testing! Prayers it’s not vEDS or that I ever have to deal with an aneurysm. My horrific headaches and migraines and chest pains are enough to make me worry about by themselves without throwing the new information into mix. I have enough anxiety as it is… What’s a little more.

Punished for Being Different..Zebra

I am not normal. I am different. I do not metabolize medications or react to them in the typical fashion. I do not present normally with illnesses, disease processes, my blood does not show inflammation. I am not normal. I am different.  I am a Zebra surrounded by horses. The system has forgotten they even exist…

I am punished for being different. I am treated differently for how my body presents itself and reacts to things. If only I could trade bodies for a week, a day, a year… a lifetime.

I do not bruise right away. Sometimes it’s days later. When my nerve acts up, it doesn’t follow the traditional pattern. So they assume I’m making it up or malingering. If I wanted to make something up, I would study and follow the course of things. Who the hell would ever make up something so freaking odd. I am simply different. And I am punished for it. I am treated differently, typically assumed as a drug seeker. Fun times.

Even with full inflammation in my body, a moderate flare up of ulcerative colitis, joints flared up with inflammation on ultrasound, my blood is normal. It does not show the inflammation in my body. It betrays me to standard medicine. They assume I’m fine. Or lying.

I am sensitive to pain. I metabolize pain meds quite quickly. Yet you could load me up with Valium and it has no effect on me. Nor do muscle relaxers. My hubby would be passed out on one and yet to me, it does nothing. It doesn’t help either.  I react ok with short term meds but am not affected by long term meds. I don’t process them. I’m highly sensitive to SSRI’s. Half of the lowest dose would make me high as a kite and it does not relent. I don’t take them.

I suffer, not so silently, in pain, quickly metabolizing the medications I am given for it but never any more even when something new and acute arises. Soon they’ll probably look to take my sleep meds away. I am being punished for being different.

I broke my nose yesterday, yet I did not bleed. (I bled a little today). There are no bruises around my eyes but my nose is broken. I am different. I have vibration sensations throughout my body at times and no answers. I feel like I have a metabolic issue but my blood betrays me. It’s normal.

When my electrolytes are slightly low, it affects me greatly. One tiny drop below normal and I react. And yet doctors don’t bother to mention it to me as it is not normal to react as I do. They forget I’m a Zebra. I don’t make sense. I am not normal and I am punished for it.

Bitter Fruits of Misery

We’re all allowed that day. That day when life’s misery has you in it’s clutches with long sharp talons gripping you tight and pulling you downward. Downward into the abyss. The dark spinning spiral of madness turning you and twisting you and spinning you till you want to hurl and curl up in a little bawl and cry.

I think I’m stuck in “that day.” That day that never seems to end and no matter how brightly you try to spin it you just can’t pull yourself out of the clutches of madness and misery and reach for the sunlight.

I broke my nose. Woke up in the middle of the night (11:37pm) to pee. Went to peak on my daughter to make sure she wasn’t staying up on a school night and there she was, snug as a bug on a rug, all tucked up tight in bed. I smiled. I thought about kissing her cheek but with the pain in my leg as bad as it is, I just thought her one instead. Then turned to leave and slammed face first into the wall I forgot was there. I heard a crack. Not only the sound of my face slamming into the wall but a distinct and separate ‘Crack’ and I knew. I knew right then I broke my nose.  I stood there stunned and baffled and pissed off all at once.

I was afraid to look in the mirror. Already I felt the swelling and stuffiness of my nose but amazingly, no blood gushed from me. I peaked. It looked funny. My typically narrow top of my nose matched the fatter portion of the middle. I wiggled it and heard a little crunch. Ok, no more wiggling. So of course I had to go downstairs to get an ice pack and really I should have just kissed my daughter. The walk would have been much shorter, the pain much less, and the nose…unbroken..if only.  Thank God I didn’t have my glasses on at the time, though some might think I might have seen the obvious wall in the dark at our new home…

So today I wake and I can still see the swelling. I blew chunks of blood and there is a blue ridge around my nose. I’m slow to bruise. That’s my normal. I’m not normal. Most likely in the next day or two, I’ll have bruising appear out of nowhere under my eyes. We’ll see. I’m an odd duck. It hurts. My neck is now a little sore and I didn’t expect that one. All I can think is, “Please God don’t let my neck be jacked up, I don’t want another flare up.”

Just a few days prior I had visited my pain management doctor seeking an added pain med prescription due to my hips. Pain came out of nowhere nearly two weeks ago, knocking me down and doubling me over and it intensifies as the day progresses. Each day, the pain getting worse. I wake up feeling some relief and by noon I’m hurting. Really really hurting. By evening, I can barely sit up and my butt is so painful I have to put it between the couch and foot bench so as not to put any pressure on it. My left hip has pain on the side, a line around the back under my butt cheek and down my leg. My left knee hurts. My left heel feels like a deep heavy bruise inside it.

I endured that for 3 days and 4 nights when enough was enough and I broke down and went to quick care. Something serious had to be wrong with me. The pressure in my stomach and low back and hip cavity were intense. It felt like I was being gripped by each iliac wing and pulled apart. I was done. The doctor at quick care was concerned. I had a fever and swollen glands and she too felt something more serious was going on and wanted me to head straight to the ER. The dreaded ER. I hate needles. I went to quick care to avoid them. You rarely escape the ER without an IV and blood draw. I didn’t want to go through it. My fear of going through all that to just be told there’s nothing wrong is what kept me from going in the first place. Though I was scared something truly was going on the pain was that intense.

My worst fears were realized…once again… the ER failed me. I watched the room clear of patients, some which had attended after I did and walked in on their own. And yet I waited. My gut told me this was a waste of time. My hubby agreed with me. The pain said otherwise. I finally got a room and the doctor wanted the CT scan ordered and he left with an order for a ton of blood work and the IV line to get started. I was smart. I had hubby stop home before we went to the ER so I could lather up my arm with Emla cream. It’s a numbing solution. I hate needles. The nurse was efficient, I give her that. The personality of a cracker. Dry and tasteless. I felt the judgement.

New PA comes in and at that point I’d been stewing in pain for 2.5 hours with no relief nor any of my normal pain meds and I was pissed off, hurting like crazy, and out of my comfort zone. For the 4th time, he wanted me to explain why I was there. 4th time as I had to explain to the quick care doctor, the ER intake, the first ER doc and now him. So I was a little testy. I never yelled but I was certainly irritated and asked when I was going to be given pain relief. He got offended. Grow some thicker skin, kid. Don’t people realize when you are in that much pain it’s difficult to talk?  Guess they’ve never experienced true heavy pain. People don’t want to sit around and gab. I’m sorry but I’m hurting, I’m roughed up and I wanted to know what the hell was wrong with me.

Apparently, my labs were normal. I am not normal. I have never been normal. My blood just does NOT show inflammation or anything else for that matter unless it’s an electrolyte imbalance. He said because my labs were normal they will only order an xray and send me home. Of my hip. No mention of my the pressure in my gut, the lower left abdominal pain I told him about, nothing. Just my hip. I got my pain meds. I refused to move from the spot to give the xray until I had pain relief. It didn’t help much. 1 mg of Dilauded and I was still in pain. He said that was the good stuff. The potent stuff. I don’t know much about Dilauded or doses but I do know it wasn’t the ‘good stuff’ to me. It did take the edge off but when the edge is 50 feet off the ground, well, it’s not much of a move.

Xrays showed a joint effusion. He had backup to tell me the ‘news.’ Guess he assumed he wouldn’t find shit and didn’t want to deal with me. He told me he was tired of people coming in just to get tests ordered when they could have waited and had it done through their doctors. He assumed I was playing the system. Probably thought I was a drug seeker. I had to remind him that I did NOT just ‘stop by’ the ER for testing. That I had gone to quick care to avoid clogging up the ER (hate needles) and that the doctor from quick care ORDERED me to go the ER for a CT scan. No CT scan. No help for the abdominal pain and pressure. So I have a joint effusion. What does that mean??

I was so irritated for being brushed off and told I was fine when my body said otherwise I told him straight up that he’s assuming I’m a horse among horses when I’m actually a zebra in the room. He got quiet for a second. I then asked him if a patient were to have moderate to severe ulcerative colitis, would they have normal blood? He said they would not. They would have inflammatory markers and other stuff. I asked if their CT scan would be normal. He said it would not, there would be stranding or something like that. I told him that a few years prior I was diagnosed with ulcerative colitis and ALL my tests were normal. I am a zebra. I am not normal.

He refused to relent. He closed himself off and spewed the same garbage and ignored the fact that not all patients present or fit into the same narrow boxes and I was brushed aside, discharged and sent home. With a joint effusion. So how did I get a joint effusion? I have ME/CFS, in a pretty bad flare up so my activity level is pretty nonexistent. The next morning I woke up with blood in my pants. I can only assume that on top of this ‘joint effusion’ I probably had a burst ovarian cyst but because he failed to do a CT scan, it was missed. This would be the second cyst in a few months time. Of course, I have no proof of this since, you know, no CT scan. I had a complex cyst a few months ago and yet the pain still comes and goes in my lower left abdomen and that night it was pretty intense.

The next morning I could walk again. I did PT with my home physical therapist and went on my marry way. The evening brought some discomfort. The next day I went about my normal again but by the afternoon, I could hardly sit up. I have pressure in my mid-spine but no pain. The pressure is still in my lower back. The butt pain is just as intense (still hurting as I type this) and the left hip is killing me once again. I had a repeat MRI scheduled a few days from then.

I don’t know if you’ve ever experienced and MRI of you hip, but if not, you have to have your feet straight out and pointed slightly inwards. My feet don’t do that. Hell, my legs don’t do that. They point outwards. My left more so than the right. They had to tie my feet together. 30 grueling minutes later I was done, drenched in sweat, spasms and twitches running through my legs and my arms were numb.  MRI results showed the same prior bone marrow inflammation in my sacrum/iliac wings but this time it showed it in my femurs. Both of them. Bilateral stress reactions at the subcapital region of both femurs. Bilateral joint effusions. Left sided paralabral cyst and labral tear, which I had been aware of. (the labral tear). Results mentioned prior MRI showed minimal inflammation on prior scan, not documented, on both (?) femurs with obvious progression 1 year later. So I have bone inflammation, stress reactions which apparently is one step before a fracture, joint effusions and a cyst. Ok. Now what?

It’s now about 1 week later and here I sit.  Now what?  On top of that, I see pain management about that prescription for my extremely painful hip (oh yea, that’s what I was suppose to be mentioning, long story later…) and no help. Nothing. I’m in obvious pain but I’m at the ‘max’ amount ‘RECOMMENDED’ by the CDC, not required, but no. I get no additional pain relief. Remember, I’m not normal. I metabolize pain meds very quickly so I have to take more through the day. I also cannot tolerate extended release drugs so none of the long lasting good stuff. I am allergic to morphine and adhesives. I can not tolerate anti-inflammatories due to a rare (very rare) double metabolic mutation that metabolized them. I can’t take aspirin as it makes me bleed. So I have very limited options. Prior steroid use caused hives the first time (very rare) and on second attempt did great for 2 days and then crashed on the 3rd and had to stop cold turkey. All this is documented in all my records. She offered me steroids.

Now what? I took them. I’m in so much pain my hope is that I can tolerate them for at least two days and maybe, just maybe, it will be enough to get some inflammation down. I decided to only take half the recommended dosage to play it safe. Doesn’t it mention it can cause bone erosion? Wouldn’t that be dangerous if I have weak bones? I need a bone scan. Isn’t she a pain MANAGEMENT person? She failed.

So I decided to switch doctors. How can I continue to see a person who will not MANAGEMENT my pain?! What if my leg were broken? Would she give me meds then? I actually asked her this and she could NOT answer that!!!  Seriously??!! So I found Corey, the guy who use to be my pain management guy at the same office so I tried to schedule with him.  Guess what?! He declined.  Because I take benzo’s for my sleep meds. They do not see patients that take benzo’s and opioids. So now what?

How can such a little pill that does so much for me cause so much controversy? Maybe I should save that one for another blog/vent session as I can write an article on that one. I might not be able to stop! But besides ALL that, even more important than all I’ve mentioned, not ONE doctor has told me anything about my hip problem!!  I’ve written to my primary doc many times. My orthopedic doc doesn’t handle my issues, only the labral tear. WTF?! I’m beginning to understand why some people go postal! Seriously!  (I won’t go postal, just saying, I understand their mindset). I asked if it could be necrosis, a bone infection, a tumor?! What is it? I have no joint space narrowing and no damage to my cartilage so, based on Dr. Google, that rules out arthritis. What are my instructions? Do I weight bare, rest it, dance on some wild chickens? What the hell do I do to fix this!??

I have researched Dr. Google extensively and there isn’t a lot out there on bone inflammation that doesn’t deal with arthritis but every mention of stress reaction of the femur mentions crutches, some kind of boot thingy and no weight baring for a certain period of time so as not to cause a fracture and yet no one is giving me instructions on what to do and what is causing it?!

I finally got an email saying my doctor looked through radiology and spoke to them and they said it’s a chronic inflammatory reaction. She said it feels better in the morning since I “rested” while sleeping so rest it…..  ……   ………………………………………………………………………………………………………………………………………

Now what? I promise I’m not deaf. I’m not stupid either. Remember I have ME/CFS so I’m not active so how the hell do you get a stress reaction on the strongest bone of your body when I’m not doing anything to impact it?!!  I haven’t ran since 2015!  Though interestingly enough, thinking about it, I was a runner and I’ve had hip pain since then. It took them 3 years to get that first MRI with progressive hip pain so maybe it was a result of my running back then?  And if so, why is it progressing? No, I haven’t been on total bed rest but I’m home-bound and use a scooter when I leave for any distance and don’t do much anyway due to my fatigue and muscle pain so if it’s from running way back then, why is it progressing?  How did it weaken to begin with? I’m probably malnourished. I’ve battled low potassium, low sodium, low vitamin D and now I just found out I have low calcium. Do I have a malabsorption issue? How do I test for that? How do I fix it? Last scope only showed inflammation in my stomach.

My life feels out of control. When I can’t function, I spiral. I need to function. I need to be on my feet. Even with some muscle pain and fatigue, I could at least keep up a little, but now, I’m lagging behind. The papers piling up, my daughter’s homework lost, my son bored and needing attention and direction. The house is a mess, stuff still left unpacked, disorganized, and cluttered. And my hubby is running himself to the ground trying to pick up my slack but it’s still piling up and I’m drowning in it. What the hell is wrong with me?!!

It’s sad that doctors can’t spend a moment in their patients shoes. I would love to stuff them into my shoes and make them walk in them with all my little abnormal ‘unique little features’ and leave them as I’ve been left but with the fear that it’s forever with no answers and no help and see how they feel about things. I want my life back!!!

So here I sit, having ‘that day’ that is completely running me over and tiring me out and leaving me wrung out and left out to dry in the winter with snow and ice and freezing temperatures… with a lost bird flying over shitting on my head. I’m not normal. I broke my nose.

 

Life’s Learning Moments…

Life has a tendency to throw us curve balls…lemons….  Having read a post online about medical misdiagnoses and mistakes that medical personnel have made, it blew my mind. I don’t doubt there are many mistakes that have been made along the way but reading about them and some being so ridiculously careless and neglectful reminds me that doctors are human. Doctors are flawed. They are not perfect machines that know everything and can tell you exactly what ails you. They are indeed…”practicing.”

I have had hip pain for many many years. Over 4 years ago, it became constant. Pain meds help but no true explanation has been given. I have bilateral labral tears and bone marrow edema in my pelvic bones. Rheumatology cleared me of those diseases and orthopedics didnt’ think the labral tears were causing all the issues I had going on and didn’t think I’d be ready or benefit from the surgery so I pressed on.

Four days ago, the pain intensified out of nowhere. Tripled in strength, knocked me down and took my breath away. It feels like there is something sitting in my pelvis, expanding my pelvic bones and ripping them open. My left leg is intensely painful all the way to my heel. There is a specific area on my upper femur bone that is intensely painful deep inside.  In addition, I’m having sudden lower back pain and left sided abdominal pain that can get quite intense. It hurts. It hurts considerably and this time, my pain meds do not touch it.

I bared it 3 days, each night increasing in it’s intensity leaving me breathless and frozen in pain. I didn’t want to go through another night like that as the pain seems to double by evening and my bones feel like they are rotting.  I am on a pain contract so part of me is afraid to go to the ER and I also am terrified of needles and rather avoid an IV to be honest. I hate being poked and prodded and I truly honestly really really felt it was serious. Something really bad is going on. Pain does not come on that intense without a significant problem. I needed help.

I went to quick care instead. I figured if it was bad enough, maybe something would show on an xray. I let them know I was NOT there for pain meds, I have my own. The doctor was truly concerned. I told her about my weight loss (well over 10% of my body weight), my swollen glands, my intense hip pain, my abdominal pain and the new pressure feeling inside of me. I was fevered. I told her how I had been apparently fevered almost all of 2018 per my medical records. My lack of appetite and bloating.

She immediately showed concern in her eyes and felt it serious enough to skip the xray and get me immediately to the ER for a CT scan and blood work. I was scared. I was absolutely certain today would be the day they would find what ails me.  Whatever new is going on is not my ME/CFS. It’s not my Fibro. This is different. I’m terrified I have cancer. I’ve been asking them to look but no one bothers. I finally have a hematology consult in over a week. I also have a pulmonary visit to establish care as I was recently diagnosed with emphysema and they found 4 nodules in my lungs. One is simply a granuloma but 3 are not. One for certain is suspicious and the locations are scary.

I had also found a lump in my breast. I felt it. It’s there. I’m not crazy. In fact I didn’t find it by looking for it, I simply saw it sticking out while looking in the mirror after my bath. My hubby felt it. My doctor felt it. She felt the location bizarre since it’s so close to the skin. She ordered an MRI of my breast and guess what? No mention of it. No mention of the prior lump that was seen on my MRI back in 2013 in that same breast either. I have issues with my right breast with intense itching near and on the nipple and have had that off and on for a while. The MRI showed a hyperintense focus on my right breast (meaning too small to classify) and I was told my test was normal. Carry on….

Anyway, I finally felt someone was taking me seriously and the doctor was sending me to the ER so I ran home, rescheduled some appointments and arrived at the ER. There were only 3 groups in there which wasn’t too bad, and one lady who arrived (still standing) after me. I checked in and told them quick care sent me that way that I was in excruciating pain. They got me a wheelchair, mine forgotten at home, and then checked me in and sent me to wait. And wait. The room cleared out, including the lady who came after me. My hubby and I looked at each other reaching the same conclusion. They think I’m drug seeking.

I was finally called back and the doctor said he read through all my information in my records and said I had a LOT going on. No shit. I absolutely do. He said he wanted to draw some labs and do a CT scan. I was ready for it. Did I mention I hate needles? I had secretly put emla cream on my arm before arriving. It helped! I didn’t feel the sting or slide of the needle and tube enter my arm. Thank you God.

Lots of labs were drawn and I waited. My pain increasing, my next normal dose about to be past due and no one has provided me pain relief. I asked. I never ask as I don’t ever want to be seen as drug seeking and I feel if they know up front I don’t need or want pain meds, they’ll take me seriously. But this time the pain was so intense it hurt to talk. I asked for them. At this point it’s over 2 hours since I had arrived and no pain meds entered my IV line.

A new doctor walked in. My bad, a new PA walked in. (they are the worst in my opinion. Give me an NP any day over a PA, though on occasion there are some great ones). I asked immediately for pain relief and he said well, lets get your history and I got mad. I’d already repeated my self so many times and they want me to do it again? Where is my pain relief. He yelled at me. He got butthurt when I simply raised, didn’t yell, my voice in frustration and told him I’d been waiting forever and I’m in serious pain.

He told me my labs looked great, I wasn’t in any danger and that they were only going to get an xray on me and send me home. He said I’d get my pain relief and I truly believed in that moment his wall was up, the door was shut, his mind stuck and I was not being taken care of, I was simply a drug seeker taking advantage of the system and getting med tests when not needed at this time. PA Jared O did not want to listen, did not want to HEAR what I had to say. He told me he was tired of people coming to the ER to get tests done faster than they would by going through their doctors. I told him I was in SEVERE pain and felt like my bones were being ripped apart, something was wrong, I needed help!

He said my blood was normal so there could NOT be anything seriously wrong with me. I was NOT dying and they are there to make sure there is not acute crises and life threatening problem and if not, go home and call your doctor.  I asked him a simple question. I asked if a patient had Ulcerative Colitis or Crohns disease, would it have shown signs in the blood? He said yes! I would have high inflammatory markers, I would have other high stuff giving clues in my blood so absolutely. I then asked if anything would have shown on CT scans and YES. He went into a discussion on stranding and some kind of something that would show on the CT scan once again giving clues as to the condition.

I said thank you. By the way, when I had moderate to severe colitis, my blood work was completely NORMAL. No inflammation, no nothing showing in my blood and guess what else? My CT scan was normal as well. I said my doctor had decided to humor me and do a scope since I was bleeding out my backside. My primary doctor said she seriously fell out of her chair when the results came in. I had ulcerative colitis with normal labs and testing. It was right there in my colon,  on the scope, I had it.

So then I told him my point in telling you this is that you assume we are all horses and that there are hardly ever zebras in the room but guess what, I am a zebra. I am one of those patients who do NOT present as typical and do not react to meds as normal, I am DIFFERENT. I am a ZEBRA.

And I knew, watching his face that the walls were up, the doors were closed, even when his eyes lit up at the use of my word, zebra, but he had shut down, made up his mind and refused to be persuaded or budged from it. He is right and I am wrong and will not admit otherwise.

I was extremely angry. A waste of my time, a hole in my arm, body hurting and I will once again be left with no answers. I got my pain meds. It did NOT take away the pain from my side and hip. It did take the edge off. Xray done, by the way only two were ordered and not of the part where the pain was actually located and not of my abdomen, nothing there, no inquiry.

PA Jarod O came back and he brought his side kick. A female with a flat straight irritated face, annoyed that she must accompany him, wasting her time to deal with little old me who is just wasting their own time there. She told me my xray revealed a hip effusion. I had fluid on my hip. “Probably from arthritis.” I had been on bed rest for a while and I had no injury but I did have a fever. It could be an infection, there could be more going on but they simply would not look. No mention of my abdominal pain.

I looked over at PA Jarod O and simply said, “By the way, I did not CHOSE to come here. I did NOT come here to waste time of get testing simply early, I was ORDERED to come here by the doctor at quick care. So do not ASSUME that I was simply there to waste his time.” They left.

He came back with a different tone but still would not budge from his stance and was sending me home. I told him he needed to remember what I am saying to him for his future patients. We are not all horses and if I can help one person to get real care, it would almost be worth it. Almost. My kids need me. We argued for about five minutes, though politely, him looking to my husband when he could not get me to relent and he would not relent as well.  We were discharged and the pain was just as intense as when I arrived.

I felt so at a loss. I called the emergency line for my pain management doctor and spoke to someone new. He was appalled by what took place but really, there was nothing he could do other than grant me permission to take an extra pain pill but nothing to figure out the dilemma I was in. I thanked him for letting me vent. I took an extra pill, a hot bath, and put essential oils on my hip and stomach and butt and laid down. The pain finally relented.

I awoke this morning, pain still in my side and abdomen, bearable in my hip though worse than my normal, and I saw blood when I went to the bathroom. No worries, that’s all in my head too. He never did address the abdominal pain I was there complaining about. Maybe a burst cyst? Who knows, he never looked, he never bothered to LISTEN to me. Guess it’s good it didn’t burst and cause deathly bleeding though it would have been worth it if I was saved in the end, just to rub it in his condescending he’s right I’m wrong god complex face. Yes, it would have been worth seeing that. Though in the end, he’d probably never admit that he was wrong…..

 

Update:  Still searching for answers. Pain had receded just to flare right back up on me.  Hip MRI shows some bone inflammation in the femoral neck so now I’m waiting on orthopedic to call me back. Still have the labral tears but one now has a cyst on it. Still have the bone marrow edema near my SI joints as well.  Yup, painful stuff but nope, nothing to see and no pain med help either…  I’d never increased my pain meds in going on two years (?) and have not flat out asked for it until today. And today, I was shown why I never asked. I was given a steroid script. A drug on my do not take list. Pain be damned…