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.

 

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