Bone/Marrow Inflammation: Anyone else?

I developed hip pain over 4 years ago. I was sent to physical therapy. Having ME/CFS, that makes any physical therapy pretty tough as this condition causes PEM with any activity.  Trying to explain to medical about ME/CFS was tough. Most PT’s have never heard about it. I was also told to “push through the pain, there’s nothing mechanically wrong with me.” How did he know? I’ve had no MRI done to show that fact. Why does insurance send people to PT without a FULL picture. Xrays don’t show a lot. This can absolutely cause further damage if there really is an issue going on. Does insurance really want to pay for that to avoid the cost of further testing? By the way, my insurance would have approved it, my doctor simply did not want to request it due to OTHER’S insurance typically not approving it. I told her mine would but it didn’t matter.  So failed PT and done. It just made me worse.

It took 3 years for doctors to really listen to me after multiple visits and many complaints. Essentially I flat out demanded it. I got my MRI. I had asked so many doctors to please give me an MRI and they all refused. My primary civilian doctor, my VA doctor, the specialists, all of them said no and to do physical therapy but yet, they couldn’t tell me why my bones hurt. Why it was so bad. Why it felt like my muscles were wanting to rip away from my bones, the pain was so intense.  Xrays were normal. 3 years!! MRI showed bilateral labral tears in both hips with bone marrow inflammation in my pelvic bones. Guess it wasn’t in my head, now was it? My orthopedic doctor did not want to do the surgery for my labral tears. He felt that there was too much going on and that it isn’t the cause of the severe pains. He also thought I was a bizarre case. He brought in their in house physical therapist and another doctor to evaluate, but that just resulted in feeling like a lab rat and no further direction or instructions on what to do besides….more pt.

I did like my new physical therapist. She was great. She listened about my ME/CFS and didn’t push beyond what I could handle. We tried a few things that flared me up so she’d back down. She discovered my butt muscles weren’t activating. My left was much worse than the right. A muscle near my knee was acting the same way. I stuck with it for months but then winter came and winter kills me. I hibernate under blankets and hardly move. My body pain is severe so I don’t like to leave my house. I stopped attending PT.

Eventually I went to palliate care. They organized home physical therapy for me which was awesome. It made my life so much easier. My therapists were also great but after months, I made 0 progression. They said insurance won’t pay anymore until we find out what’s causing the issue. But no one is helping me determine that. So home PT was cancelled.

One year later with progressing pain and they repeated the MRI to find that the inflammation progressed. They also noticed it was in my femur neck bilaterally, previously missed on the first MRI. And it’s worse! Also bilateral joint effusions and paralabral cyst in left hip. The radiologist had no clue what it is. He said possible ‘odd pattern of a stress reaction’. I asked my primary if it could be cancer. She had the radiologist look again and they said NO. She ASSURED me it could not possibly be cancer. Could it be a fracture that is hairline? They said NO. Then what it is??!!

My ortho doc refused to see me for it. He only deals with labral tears. Ok, now what? Primary told me to ‘rest my legs’ since standing and walking make it worse. i’m already in a wheelchair for any distance and can’t stand long. So I rested for months. I was in a pretty severe flare up due to moving and the cold temperatures.  I had a nearly 2 week reprieve of some of the hip pain, though my leg pains never quit, but once I started pushing myself to walk more, the pain came back in full force. Since it’s hot outside, I’ve been going to the water park, scooter in tow, and sitting on a tube while moving my legs as much as possible to build back some strength. I noticed there is NO atrophy in my legs. In fact, they are pretty muscular for being on rest. I do seem to have atrophy in my butt muscles though. Not one doctor has evaluated me from head to toe in regards to any atrophy. Not one.

So no one is treating me for bone inflammation. No one is telling me WHY my bones are inflamed and progressing. No one is helping me so Dr. Google it is. And yet doctors get angry when we use the internet to search our symptoms. Maybe if they did their jobs we wouldn’t have to. I don’t have benign transient bone marrow inflammation as that resolves within a year. I’ve had this for 4 years with progression. Could it be leukemia? It runs in my family. My cousin battled it as a kid. My uncle died a few years ago and my brother is battling it now. But no, I was told my blood work was normal and it would show something in my blood. What about my swollen glands in my groin, leg, and neck? They did a CT scan and it did show small reactive nodes but apparently they’re not swollen enough to be concerning. I was also told they only look swollen due to my weight loss…. Umm, I went to the doctors about my swollen glands BEFORE the weight loss. I also noticed I had a fever on the majority of my doctor visits during 2018. No mention of this.

I was told my bone density scan was normal by my primary but my VA doc told me it was low normal in that area. I asked my VA doctor what to do and that no one is working with me in regards to this and she didn’t know!! Heck, when I told her about my weight loss and was worried, she told me to try the Keto diet…. 😑 I’ve dropped over 10% of my body weight and am underweight and I should diet?? That makes sense.

So weight loss (over 10%), swollen glands, lack of appetite, bloating, gas, abdominal pains, lower back pain, intermittent pain in my pancreas area,  severe sleepy fatigue that is new and different from my ME/CFS and fibro fatigue. Fevers more often than my ME/CFS fevers.  Sudden bouts of nausea that come in episodes. (those have actually gotten better, still get them but not as severe). Bladder pain and burning, yes I have IC but I feel tubes inside me that feel inflamed. It’s hard to explain but they are on the left and right side. It seems worse at night but I feel it intermittently and it’s painful. I thought them either my bladder tubes that lead to the kidney or my Fallopian tubes.

My urologist was ADAMANT that it’s NOT my bladder.  Prior bone scan, which was normal (I’ve read there can be false positives) showed a bright white focus in my lower left abdomen. They had no idea what it was. They decided on a possible diverticulm in my bladder based on prior MRI that appeared to possibly show that. (never mentioned in my report). They call it ‘practicing’ for a reason. Again, my urologist swore there was NO diverticulum. Once I told her about the bladder tube or Fallopian tube pain, she immediately ordered me to see GYN and someone different this time, so I did.

By the way, the CT scan to look at my lymph nodes showed a few scattered lung nodules. One was concerning. So now I have a follow up in September to see if they’ve grown. I also have very minor emphysema.  Emphysema at 40 is not very common. I’ve read it more typical in those with EDS. Still waiting on genetic testing for that. I’ve also had my breast looked at as I found a lump. I was told it’s my implants. MRI of my breast showed “stable enhancing focus in the posterior lateral breast consistent with benign
proliferative change” in my opposite breast.  Report mentioned repeat testing in one year. I was told my breast MRI was normal. Ok, with all my symptoms, I’m downright paranoid. What does an enhancing focus mean?!!  That’s normal??

My crazy is coming out. My fears and anxiety are on overdrive. Bone inflammation, lung nodules, enhancing focus in breasts… and now my recent news from my new Gyn.

I went to see my new gyn as my urologist requested. I told him about my issues, that I’m severely estrogen dominant with almost no progesterone and very little testosterone. Apparently, estrogen dominance can cause female cancers. He examined me. He asked if I knew about my uterine prolapse (grade 1). Umm, no. No one mentioned this to me. He asked if I was told about my thickened uterus. Ummm, no. No one mentioned this to me. He asked if I knew about the water fluid and once again, no. I’ve had recent ovarian cysts on my left ovary. I asked the prior Gyn oncologist about cancer since I had the weight loss and swollen glands. After all, he is an oncologist. He assured me it’s just a cysts. We watched it and repeat ultrasound showed it disappeared after a few months. It’s possible I had another shortly after that burst. I had gone to the ER for severe hip pain, pain radiating down my legs, lower left abdominal pain and pressure in my abdomen with lower back pain. He simply xrayed my hips, yelled at me for taking advantage of the system and sent me on my way. Woke up with blood in my pants the next morning.

I’ve had changes to my period, some spotting between as well. My ovulation pains have increased in intensity over the last couple years, something I mentioned to my prior two gyn docs and they shrugged their shoulders. I also have worsening cramps and I won’t go into details about the other issues that have changed. I’m thankful to have a new gyn who actually listened to me. Who actually noticed the issues down below. He didn’t bother to take a sample. He went straight to schedule me for surgery. I’m now waiting on that and waiting to know if this could be the cancer I’ve been searching for. I feel like it’s there somewhere. I feel like I’m dying and yet no one has been listening. Hopefully, for once, it’s all in my head. When you look at the whole picture, it does sound like cancer. I’m not crazy for thinking that. But what of my bone inflammation? Could this be linked? Could it have started there and moved elsewhere? I never have presented like a typical patient. I’ve pointed this out to doctors many times. I have oddities that defy normal medical science. I’m a zebra. I’m different.

Anyone else suffer with bone or bone marrow inflammation?

The medical system is often a joke to me. It needs an overhaul. Both in how doctors/nurses treat patients with their consumed bias due to those with drug addictions and mental health issues that they automatically assume we’re all faking and must be drug seeking or just a mental health case. Umm, even drug addicts get sick and need care as do those with mental health issues. Not everything is in their heads. And bias. They should have had classes on this as they’ve learned, “first do no harm…” which somehow got lost in translation and as we are all humans, they’ve allowed their biases to creep in and taint them. Now with us who are zebras, we’re often mistreated as those above. There is not enough training other than to assume we’re all horses which puts us all at a disadvantage when we really are…Zebras.

I should know about the gyn issues this month.  I should know about my lung nodules later this year. I still sit wondering about my bone and marrow inflammation, dealing with bone pain and muscle pain, ligament pain. No one is addressing that. Back to Dr. Google..

Anyone else have this experience? Any thoughts?

Genetic testing! Zebra results soon

Well, I’m finally getting tested for ehlers-danlos! Excited to know if that’s the cause of my Zebra self. My genetic counselor is also running another type of panel on me. He said my symptoms remind him of….Dystonia.  F*ck. (scuse my language). I had run into that word before and felt it was reminiscent but wasn’t fully on board due to the literature not quite matching up with my symptoms. So I joined a Facebook group for patient experiences and sure as shit, it fits. My son is also showing those same signs. (disgruntled angry mom about this).

Those crazy vibrations? Well, it seems common in this group. My muscles are also pretty tight for being on bed rest most of the day. I should have atrophy, I don’t. Guess those vibrations are keeping my muscles from completely relaxing so I’m exercising without intent, so it seems. I’m really nervous about this one as reading about it sucks. I don’t think there is any family history of this. It also might not show in my genes so if it doesn’t, off to a movement disorder specialist to get checked out. Knowing that my son is exhibiting the same signs, I feel strongly, it’s in my genes.

I got my periodic paralysis panel back and they found a VUS. Variant of Unknown significance. Typically they don’t allow free family testing for a VUS but they are studying this condition and since the frequency was non-existent, they are testing my family. My genetic counselor said the lower the frequency, the higher the odds for a pathogenic mutation. Makes sense.

So maybe soon, I’ll have answers as to why my body has fallen apart and why I am not so normal. Maybe the physical aspect of the military along with the exposures caused it to express? I never had signs of anything during my childhood. Then maybe the constant physical therapy kept triggering it? I guess that part doesn’t make sense as obviously it was triggered to cause physical therapy. Still learning. Still wanting to know WHY I was so healthy before I joined the military and yet so ill upon leaving it. Why!? No one else in my family seems to suffer like I do. They’re all healthy in my direct family line. Vaccine reactions to the onslaught of toxic goo given to me all at once? My body doesn’t process things normally. Anthrax vaccine? Some mystery experiment done on me?

I have so many medical conditions it makes my head spin. It’s also extremely embarrassing to list them all.  ME/CFS, Fibro, Migraines, tension headaches, IC, UC, IBS, POTS, autonomic issues, mild emphysema, possible HKPP (I’m almost certain I have this), and others…

The wait sucks. I’m waiting. Will update…. soon(?).

Embittered bouts of Jealousy

I woke up bitter this morning. It took me a while to evaluate my emotions to realize I’ve been hit with one of my moments of embittered jealousy. The trigger was something  completely benign in regards to the typical causes of jealousy. In fact it was something completely arrogant and rude of some guests visiting my neighbor for some kind of party.

We live in a cul-de-sac but we have the luxury of no real neighbors to the left, only a fence for a walking path and some greenery and to the right is an additional driveway, a bit of land and then two homes further around the cul-de-sac so we have most of the circle to ourselves. There is tons of street parking because of it. The neighbor closest to us was throwing some kind of party and they had an abundant amount of guests lining the streets with their cars. One of those guest decided she would park on the street but directly in front of our driveway, blocking our ability to reverse out of it, and we had a car parked in the drive. I was shocked that someone would even consider that a valid option and block a person from leaving their own home. How very arrogant and rude. How she has the audacity to even think it’s remotely ok, especially without so much of a request to the owners of our home (us), just blew my mind.

Normally car free, our almost private cul-de-sac

So of course I did the neighborly thing and threw on my boots, in the same baggy sweats, sweatshirt, and beanie I’ve worn for days, and trudged outside raising my voice to the two ladies I saw about to enter the home, hoping to get their attention so I wouldn’t have walk all the way over, with aching legs and a stinky body, but alas, they heard me on my third attempt at hello or hey or whatever it was I yelled, while heading their way. I told them to let whoever parked in from of my drive, know to move their car. One of the ladies spoke up and apologized and said it was her car and she THOUGHT we would have room to still back up…..  Umm, there’s only a few feet and I’d have to reverse drive through my YARD in order to hopefully squeeze out of the space and not hit my mail box. No. Not happening. She begrudgedly moved her car, parking in front of the neighbors drive instead.

The lady was pretty. She was dressed us and carefree, had been laughing with the other lady as she was about to enter the house, a house full of friends, light and laughter. I was too busy stewing over the high and mighty disregard of other people’s property to think anything else in those moments.

Yea, I called her a dumb ass. I love my Ring doorbell.

So the next few minutes were spent gossiping with my mom and hubby about the stupidity and self centeredness of people in today’s society; a nice break from  the normal mundane topics of conversation when you’re stuck behind four walls for days and years on end, until the next idiot decided it was her turn to block my driveway. Though I will give her a tiny amount of credit, she wasn’t blocking it near as much as the first crouton; she did pull as close to the second driveway as she could, but having said that, the space between my two driveways are NOT a parking space nor is it enough room to hold even a half a car, unless you have a tiny bug or fiat.  This time I didn’t see anyone outside to yell at. So I got hubby. Hubby refused to allow me to walk all the way over there since he knows my legs are fairly useless betraying appendages that hurt to use. The lady came out and moved her car….

Just park that anywhere…..

Again we had some lively discussions about the topic.

So I woke up this morning feeling bitter. It took me a moment to realize that bitterness was due to the parking escapade the day prior. I recall in one of those moments when the lady was walking to move her car (The first one) that she walked with a purpose, she was dressed up, her hair was nice, she was pretty and she walked comfortably. I was that woman once. I was that woman. I was that. I was.

No one understands the simplicity of simply walking. Being able to dress up, go out, carefree, live life, enjoying the moments, simply being… Until those moments are an unbearable struggle, riddled with pain and fatigue and exhaustion, it’s so simply taken for granted. My life is changed. My husband’s life is changed. My kids life is changed. We are changed.

Gone are those moments. Gone are those days of exploring the world, going out, family gatherings, spontaneous adventures, enjoying the amenities around us. I am jealous. I am bitter. This is one of those days when the clutches of these diseases pull me under, chew me up and spit me out. When I realize my yearning for a normal life are hiding below the surface of my simply existing, wasting away, drowning in my pain, fatigue, and disorganization.

I want to dress up again! I want my husbands eyes upon me, devouring me, lusting me, enjoying our days, lost in each other’s arms and forging our own path in life, together, carefree. My body is gross. Gone are the curves that frame my body, the muscle that fills my limbs. My clothes hang limply, my skin sags, my muscles gone, my strength, my spark.

My kids are alone, finding their own way and stealing moments at a time with me when my brain isn’t overstimulated and overwhelmed by the sights and sounds around me. Gone are the days we enjoyed each others company, attention, energy, chasing each other around the house in a game of tag, hide and seek, going out as a family, tickle monster… Mr. Boogie…

I’ve spent many moments longingly observing others around me on the rare moments I leave my house. The jogger running down the street, the lady walking her dog, the friends laughing and enjoying their time out. I am jealous. I’ve allowed the bitterness to take hold this morning. My moments of anger are few as I know it will do me no good wasting my emotions on things I cannot change. I should focus on those positive moments and what I can do but pain is crippling and when my flare is ripping every essence of relaxation and peace within me, those moments are hard to grasp and hold on to. I don’t stay at the bottom of my mind for long. I know it’s a slippery slope of toxicity that can rip inside me and hold me within it’s clutches of darkness, spinning me further away from myself and stealing what remains of my existence.

I’m only 40. In my prime. Why me? Why have I had to spend a lifetime of suffering of pain of disability? It’s only gotten progressively worse with time. I always wanted to be one of those blue haired grannies, purposely dyeing my hair and wearing funky outfits, dancing to the beat of my own drum and entertaining those around me, enjoying life and being outspoken, sharing my wisdom and mortifying my grandchildren. Will I even live long enough to see those grandchildren? Will I even get to see my kids grow up? Knowing that I may not even walk if I do, as walking is difficult to me at 40, I have a wheelchair and scooter and how the hell am I ever to find myself dancing at a ripe old age with blue hair and funky clothing if I can’t even walk at 40?

These are my moments of bitterness. Of Jealousy that sneak in and take hold, catching me off guard and bringing me down to a pit of despair. If only they knew how easy it is for them. How simple their lives are in regards to something as simple of walking. How those moments can so quickly be snatched away forever changing their lives and altering their future.

These are my moments. My bitterness. My jealousy.

 

Yes!! I take Pain Meds!!!

Painpic

 

I recently read a very heartfelt blog in regards to pain management.  Her words could have echoed mine.  It seems that those who take pain medications have become villanised during the recent opioid ‘crisis’ sweeping through this nation.  As doctor’s slash prescriptions across the states and other’s stop supplying all together, where does this leave those who sit here in chronic pain land?

Did you know that studies show less than 6% will abuse their opioid prescription?  LESS than SIX percent!!!  Let that sink in.  I thought we were having a crisis here?  Ok, many people apparently die a day on opioids…  Please enlighten me as to how many of those death incurred were from following their doctors orders and not abusing their medications?  How many?  Why in the blue monkey hell does 94% of the population who take their medication as prescribed have to suffer for those who CHOSE to abuse their drugs?  If you blame addiction being the problem, then you don’t have a crime, you have a mental health crisis for those that do so.

Studies have also shown that those with TRUE chronic pain do NOT abuse their medication and many do not get high or sleepy when on them.  I’m one of those people.  I don’t get high on my pain meds, I get activated instead.  My doc informed that a small percentage of people get energetic on pain meds rather than sleepy which is why it is difficult to take them before bedtime and which is why I do NOT take pain meds at night.  I suffer till sleep takes over.

I’m also a rare patient indeed.  I have found my body to contain a rare double metabolic mutation on my CYP2C9 pathway that is responsible for metabolizing anti-inflammatories and blood thinning medications.  What does that mean?  I can’t take those drugs.  Less than 3% per one study and less than 1% in another study have that mutation.  It’s not well known.  I also happen to be allergic to Morphine, discovered that toroidal has no effect on me and I’ve exhausted pretty much all of the migraine medications available.  I also metabolize other medications differently and tend to have opposite reactions to drugs and extreme sensitivities to many others.  Meaning give me even the smallest dose of some drugs and they will send my system into overdrive with various horrible side effects that don’t tend to go away with time.  Other drugs you can pump me full of and they have no effect, like valium, a long acting benzodiazepine but  give me Xanax, a short acting one and it will make me really sleepy.  I was told that is not how it’s suppose to work, but hey, that’s how it works on ME.  Can you imagine going to the ER in pain?  Hey doc, I need this pain drug, that’s the one that works.  “I’m sorry, you need to leave, your drug seeking.”  I’ve had this experience.  You think maybe I just know what works for my body since it’s my body and I’ve lived in it for 39 years?

Never have I gone to the ER or the doctor asking medications for any reason other than as needed and intended.   I’ve taken opioid medications on and off over the last 17 years and not once have I abused them.  It wasn’t till my last flare when I was knocked off my axis and having to live in unending debilitating pain and muscle fatigue that I started using opioids full time.  But opioids don’t work for chronic pain says very few people in true chronic pain….  But the doctors seem to believe that.  What about the patients.  You can see article after article saying that these meds do not work for that and yet all the comments from real people say they do.  Opioids do NOT work for fibro.  Well, I have that too and it damn well reduces the pain enough for me to function so it works for ME!

TMI, but just to give you an idea of the reality of my life:  I suffer from: ME/CFS (Myalgic encephalomyelitis or Chronic fatigue SYNDROME), Fibromyalgia, Migraines, Chronic headaches, IBS-D, IBD (in remission), Interstitial Cystitis (A fun one), Tendonitis in many locations, esophageal spasms,  dysphasia, (constantly inhaling my own saliva and choking), GERD, Gastritis, significant ovulation pain that can drop me on my knees, painful periods, restless body….   Is that enough for you?  MOST of those cause me pain.  What I found is that opioid medications have helped ME with those conditions, almost all of them.  One drug for many problems. I’m also on a medication for nerve pain.  I have joint pain in almost all of my joints either all together or flaring up in various places throughout my body at different times.  And I haven’t even mentioned my hip pain. The most excruciating place on my body.  Imagine feeling like your groin bones are being twisted on and off all day long.  Imagine trying to walk when each step flares that pain up.  Imagine being in tears in bed at night because you can’t get comfortable due to the pain! No position helps unless I’m sitting criss cross apple sauce in my chair. And due to a failing medical community (in my opinion), I have yet to even be allowed an MRI to investigate it even though I’ve asked many times. Imagine having to buy your own cane as the pain is so bad.  I have bone pain.  I have nerve pain.  I have PAIN.  InvisibleIllnessElianaMeir Picture Created by : Eliana Meir

I also have fatigue.  Due to ME/CFS and fibro, I have fatigue.  Imagine going to a pain management doctor seeking pain meds for ME/CFS.  Most only know the name of Chronic fatigue syndrome and most of them that do, have very little knowledge of the condition as it is not typically taught in med school, very little money has been given for research for a condition that has effected a portion of people around the world.  As one pain doctor told me, “I would NEVER have put you on pain meds for chronic fatigue!”  I knew right then she was ignorant to my condition.  I’m not tired.  That is not the fatigue I suffer from.  The majority of those who hear those words, CFS, ASSUME I am overly tired and most likely lazy.  Let me give you a little idea of what I mean.  My muscles will feel like I have the flu without having the flu. Can you imaging having aching flu pain in your muscles all the time?  My muscles will fatigue so easily that if I push it, I will be paralyzed until my muscles have had enough time to recoup the energy it’s lacking.  It hurts.  Imagine holding your arms or legs out for hours at a time.  You know the quivering shaking painful feeling that builds up in the muscles the longer you hold them out there?  THAT is fatigue! So people can assume I sit here being lazy and ‘tired’ with my unknown condition and make judgements on me based on their own misinformed mind.  Muscle fatigue HURTS.  It will flare up just walking to my mail box.  Try going grocery shopping!  One time I was determined to trim a few branches (thin ones) that were growing and hitting our roof.  I sat on the roof with some tree trimmers, clipping the little branches until my fatigue was building up.  I was curious what would happen if I kept going.  Well, I learned.  I won’t do it again.  My arms became paralyzed.  I couldn’t use them. I couldn’t hold anything in my hands, I could lift them up, they flopped like a fish and I sat there on my chair (with help getting inside) for over an hour as the feeling gradually faded and I could use my arms again.  This, again, is muscle fatigue.  Now imagine that in your legs when you’re trying to go grocery shopping or any length of walking.  Now you know what I suffer.  I have a wheel chair for events that require a lot of walking as I wouldn’t be able to attend otherwise.  I am mostly housebound and when I’m not, I pay for those times I leave my home.  It can be paid for days while my muscles work to repair themselves.  Opioids have helped me with this.  They take away from the painful heavy feeling that comes on from use of my limbs.  I still have to pay for it, but it allows me to leave my home and attend my chores, cook dinner, vacuum, and just LIVE. I want to give a shout out to Jennifer Brea for being brave and bringing awareness to our condition by creating the documentary called Unrest! In limited theaters now and free on PBS in January.  I’m so proud of her!

So please tell ME how opioids don’t work for these kinds of things?  Do you live my life? You know what it’s like or how much better my life is managed when I have a medicine that actually does work for me?

The regulations that have come down in regards to opioids are not helping patients. In fact, it’s harming them. If they think the objective is to stop abuse, they need to know that they will only create more abuse by taking true pain sufferers off of the medications that reduce their pain.

If a person is going to abuse a drug, they will still abuse a drug even if it’s taken from them. They will just find something to replace it. Stopping true pain sufferers from having a medication that works for them will only create more pain and more addiction as they seek out alternative sources to stop the pain. This is my body. I have to live with it. Why can I not chose what to put in it? Why can I not have a say in my own healthcare? Why are people being left to suffer and told to see a shrink, that will help with the pain.

Not only do we deal with doctors judging us, but pharmacies as well. It’s not the first time I’ve been looked at like I’m doing something wrong. They too hold strong opinions without knowing your history. It’s a sad world when one finds something that works, and yet it has such a strong stigma attached to it. If I did NOT have my opioids, I would be living illegally or would be bed bound. I have two children to take care of. How am I suppose to do that from my bed, riddled in pain and suffering? I’m hearing the VA is stopping the use of opioids. Many got cut off cold turkey after long term use. One of those people from our group committed suicide. The pain is real. The support is lacking.

What studies are finding is that even though opioid use is down (I wonder why, hah) the crisis is getting worse.  People are left crippled in pain, others are turning to illegal drugs, thus making the situation worse, and even more alarming is the rise in suicides taking place due to the pain being too much for people to bare.  They are creating an even bigger crisis!  Doctor’s that DO want to help patients are being made to jump through hoops in order to do so.  They are on a watch list and as a patient, you can only pray that the hammer doesn’t come down on your doctor’s head leaving you existing like those who have already been cut off and drowning in pain.  Patients are being passed around from doctor to doctor as each tries to get the other to prescribe the pain relief needed but won’t do so themselves due to fear of this barbaric system.

Another major point is that opioids can cause physical dependence.  This is one of the reasons sited for stopping the use of opioids.  It will be a challenge getting off of those drugs in the future.  Some will build a tolerance to the drug and will need to continually increase it to achieve pain relief.  I agree that this is an issue.  But please tell me what alternative method of pain relief will NOT cause the very same issues they blame with opioids?  Do we not become dependent on Gabapentin, Lyrica, Cymbalta, and other anti-depressants they’re passing out like candy in hopes of relieving some pain?  Have you actually read the studies on those drugs?  Essentially, per one study on Gabapentin, 30% of patients achieve pain relief on this drug.  Typically going from a 7 to 8 level pain down to a 4 to 6 level pain with use.  Not many actually look at those numbers.  You may very well be in the 70% that has little to no relief.  Also true is that many have to continually increase the dosage to maintain pain relief.  And getting off of this drug!? Wow, the side effects of reducing the meds or even being on them are intense.  How is this different from opioids?  I was on Cymbalta and it did nothing for pain, in fact it was the WORST drug I have ever had to get off of.  I was enraged, full of anger, dizzy, felt drunk, nauseated, and suicidal even reducing this medication at the slowest possible rate I could.  It was ugly and I will never touch that drug again.  I tried gabapentin at one pill a day at 100mg.  Anyone taking Gaba will know that that is minuscule compared to the 3800mg most will end up taking.   One pill and I woke up with swollen eyes that were oozing liquid, dizziness, blurry vision, and chest pain.  Can you imagine had I taken a typical starting dose?

So my point is that we become dependent on most drugs given.  Your body adjusts to the chemicals it’s taken and getting off even the simplest drugs like Nexium will cause withdrawal in some form or another.  Our body has to readjust to the medications being taken away from our system.  So why I can’t I chose which drug I want to risk?  Why can’t I have a say in what I chose to put in my body?  Especially when I know what WORKS for me?

The stigma is real, the pain is real, and the problem is getting worse.  The pendulum has swung in the opposite direction and it’s far worse than it was before.  Because we are left suffering.  No quality of life.  I’ve made the decision that quality is much better than quantity.  It should be my RIGHT to chose that.  We should not be left to suffer.  What’s the point in asking a person’s pain level if they don’t care to correct it?  So here I sit, in pain as I wait for my next prescription, putting me back on my prior dosage after dropping to try something new that did not work for me.  So because of the laws, I can’t get relief now.  I have to wait two weeks for my next allowed time to fill so I can get the relief needed for my pain.  Today is my daughter’s birthday party.  I can only hope that my medication will get me through so I don’t have to suffer in front of others and I can enjoy her day as I count down to the day I can get a bit more relief again.

 

The link to Unrest:  https://www.unrest.film/

 

For now, I’m going to publish this.  I will pull up the studies and add them to my blog when the time allows as I need to now focus on my child and making her day as special as I can.  I will add them though.  They need to be seen.

 

https://medlineplus.gov/magazine/issues/spring11/articles/spring11pg9.html

http://europepmc.org/articles/PMC4026559

http://ajph.aphapublications.org/doi/10.2105/AJPH.2017.303906

https://www.researchgate.net/publication/262695649_The_damage_done_by_the_war_on_opioids_The_pendulum_has_swung_too_far

Home Delivery Meal Plans… By your disabled Mom

I have an invisible illness which causes significant fatigue and body  wide pain.  It’s called ME/CFS.  (Myalgic encephalomyelitis or Chronic Fatigue SYNDROME).  Evening times are probably at the peak of my pain and fatigue most likely due to all my movements during the day.  So dinner can be a pain literally and figuratively.  I feel bad about neglecting my household chores but even more so about not having a delicious meal prepared and ready for my husband and children.  I’m a bit old fashioned and if I’m home all day, it’s my responsibility to make sure my family is fed.

I’ve decided to try out a home delivery service.  It was my doctor who turned me on to the idea when discussing altering my diet to reduce inflammation.  She recommended Thrive which I have heard of but never tried.  While researching the company, many others were mentioned in reviews and during my search so I decided to look into each company.  I started with Thrive and put my name on a list to be called for one of their hosted ‘taste’ parties.  I figure if the freeze-dried food is good and enticing, I might try their meal delivery service.  Since they offer the ‘taste’ first party, I went a head and set up my first delivery service with Home Chef, while I wait to ‘taste’ Thrive life before purchasing.

I have a family of four and have selected twice a week to keep the cost down while starting this journey.  What I like about Home Chef so far is that I can cancel at any time, skip a week, and select which meals I want delivered for the week from their list of eleven meals.   I can add additional items to be delivered as well such as a fruit basket or smoothie.   My first delivery will be next Wednesday and I’m looking forward to having a meal plan in place, even if only for two days a week.  I also like keeping the number to two so that I can cook meals I know I like and be capable of having left overs for the next day’s lunch, something that likely will not happen with a meal delivery service since they only send enough for each person’s portion.

So stay tuned for my review of Home Chef, Thrive Life’s taste party, and other meal services I plan to try.  I will be adding to this blog as I experience each service!

Alas, my Home Chef meal has arrived!!  I was pleasantly surprised at how quick it shipped.  I received it yesterday rather than today as scheduled but since I’m pretty homebound, this worked out well for me!

I had selected the twice a week plan for a family of four and chose: Sunday Supper English Roast Steak (Which I have to say, I swapped this one out once or twice as it didn’t look good in the picture, but those darn Yorkshire Puddings kept calling to me!!).  By the way, the picture is deceiving, they looked much better in person.  Second choice was Ponzu Noodles and Charred Green Beans.  Not sure if I’m happy or not about not having a meat in my second option so I might add a small sausage link to it.

The packaging was great!  It could have sat a few more days if need be. The ice packs  were still quite frozen and it was well insulated.

 

 

 

So those are the pics of my first arrival!  I’ll post more when I get to cooking!!

So, I have since made Both meals! I can honestly say, I am pleasantly surprised!!

Meal #1  Ponzu Noodles and Charred Green Beans

The meal itself was the Noodle dish.  I personally need a meat item on my plate, but this would be completely filling to a vegetarian or someone who just doesn’t want to cook a meat!  I ended up cooking a tri-tip roast that was defrosted to add my own touch to the meal.  It turned out perfect.

The meal was easy to make with step by step instructions that were not difficult to follow.  It was healthy and it was tasty!  Best of all, both my picky eaters loved it!  Another bonus is the nicely done recipe card that has holes to add to a binder to save the recipe and make it again.  We will definitely make this again!

 

Meal #2  Sunday Supper English Roast Steak

The recipe card with the picture of this meal did NOT look good to me.  It was the Yorkshire pudding that peaked my interest and ultimately drove my decision to try this one.  What can I say, the word “Pudding” got me.  I was duped! LOL.  I’ve never had nor heard of it before so I was surprised that it was actually just a type of egged bread.  Turned out fabulous though.  My hubby thought it could use a little ‘something’ and the kids were just ok about it.

 

Once again, I felt the meal was lacking something.  I thought it needed a pasta so I added my own pasta side to it.  There was definitely enough, with the pasta, to satisfy everyone. I thought the green beans were boring in it’s recipe so I added some garlic, honey, and soy sauce to the mix.

This was one of the first times cooking a steak on the stove top.  Not something I would think to do but it turned out quite tender and the flavor was good.  I had a bit of difficulty getting the temperature to rise to 145 degrees as the recipe called for but I eventually got there.  The recipe said about 5 minutes per side but it was more like 10 minutes per side.  Once again, very easy directions and every thing needed for the recipe was provided except for salt and pepper.  They even sent butter packets and tiny milk cartons for the ingredients.

I really liked this meal as did my kids. My hubby thought it was good, but not great.  He did say he’d eat it again though. So I count that as a win!!

 

My next blog post will cover next weeks meals!  I have two more from Home Chef before I try a week of Marley Spoon.  What I really like so far is the ability to select my meals from a list of choices as I would never buy from a site I couldn’t have a choice in.  Everything is pretty much included other than salt and pepper so far.  It’s all prepackaged (I know, recycle!!) and put together so I just grab out the bag I need and get to work!  Life seems a bit more simple and easier to manage this way!  Less meals for me to think up, write a list for and either send hubby to the store or attend myself, a task that always drains me.   So essentially, a smaller meal plan and smaller grocery trip.

As a side note, we had plenty of left overs from meal number 1.  Meal 2 had a small amount for maybe one person.    Looking forward to next week!

 

Invisible Illness…

The pain is there, inflammation too, but doctor’s are clueless, what should I do?

I have an invisible illness that has taken hold, slowly crippling my way of life. I had my dreams ahead of me, a future to look forward to.  I was in the gym getting myself in shape, discovering that I had a love for running. I was studying for the LSAT, getting ready to start a new journey, one that I had been looking forward to for many years. Master’s degree down and Law school in my future, perfect for my type A all in type of personality. I’m no wimp.  I like to get my hands dirty. In fact, I’m a bit of a micro-manager.  I rather do things myself, I have high standards, no one will do it as well as I could.  But all that has changed. I’m not who I am anymore. I have an invisible illness.

Probably one of the most difficult things with an invisible illness is not what I suffer with daily, but the doubts in my doctors eyes, the suspicion, the questions. How do you prove what you feel when pain can not be measured? When holding up your phone in bed causes your arms to throb, cleaning causes your body to flare up in pain, weighed down by invisible weights pulling you towards the floor. Just walking up the stairs with those heavy weights is enough to make me pause and rest, draw in my breath, and gather my strength.  Noises smothering you till you just want to crawl in a quiet dark hole and let your mind be at peace. Movements overwhelming, filling your vision till you just want to shut everything out and rest.

I’m hypersensitive. I feel every ache in my body, my bladder only slightly filled yet the sensation is every present, a tiny gas bubble searing it’s way in my insides, my heart beating against my breast, a tiny hair irritating my cheek, the way my breast squish against my bra, the artery pulsating in my stomach, my dry eyes, painful joints, aching muscles, horrific stomach pains day in and day out. I feel everything. Surrounded by a sea of sensations waiting for my next escape. The drugs dull the pain, the sensations, the heavy fatigue, pushed at bay for a few hours relief until the effects wear thin and the feelings return.

I have an invisible illness, one shared by many but never the less, ignored and pushed aside, treated as though it is a disease of the mind and not physical, physiological or neurological in nature as the symptoms suggest. Remember when epilepsy was a mental illness, locked up in an institution because doctors didn’t know how to handle what they couldn’t measure?  History repeats itself.  Rather than telling the patient that technology has not caught up with the process, they blame them instead for PTSD, anxiety, somatization, and depression. Anxiety may be my cross to bear, but logic rules my mind. Can they not handle defeat? Do they not know that they are not infallible, not all knowing and all mighty?

One day they will look back and know.  They failed us.  They denied us, ignored us, and left us to rot. They had no answers, but they will…one day.

 

Please share, comment, or like on this post.  Most of my posts are just for myself as writing helps with my frustrations, but I think my story represents a large number of people in this world.  Even a quick comment to say hello!  I just want to see if this post is being seen, if you can relate.