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Hi, my name is Fiona. My daughter has just been diagnosed with CRMO chronic multi focal osteomyelitis a rare bone disease at age 10. , also had low vitamin D , before this she was full of energy and did all the normal things a kid does it took about a year to get diagnosed, about a month before before being diagnosed we got called into hospital on Christmas Eve because the Paediatrician thought she might have an infection in the bone or worse! after waiting there and after several blood tests they said they didn’t find anything sinister and sent us home and said they need to discuss the MIR scan. my daughter had previously had inflammation on her knee pains in both her upper arms and lower legs and had an X-ray and an MRI of the knee as it was inflamed and blood tests & physio by this point, finally at the beginning of February we had an appointment with hePaediatrician and they said they are not 100% but they think it’s CRMO! she still need more MRI scans but it looks like it’s this after reading up about it!

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Wondering what and why

As I lay here in bed waiting for my dinner to cook, my mind is walking down memory lane. When I consider all the health issues I’ve had and those that became chronic the question of why is nagging at me. Another burning question is why am I still alive?

There was a point when I thought I had had all the illnesses and health issues I should have to deal with. Well, you couldn’t proof it by me! Things just keep happening.

I was thrilled to be able to restart my Simponi Aria Infusions this past Tuesday. It was so painless with my Med-A-Port in place and working. No IV or Lab sticks! I took myself out to dinner and enjoyed a short shopping trip through the Dollar Tree. About the end of the shopping my left foot ulcer started hurting. Normally, it doesn’t bother me. Once home, I decided to change the dressing. What a surprise awaited me. Next stop the Emergency Room. I figured a little debridement, an antibiotic prescription, and home, into me mighty and snuggling with my three furry babies.

One of my girlfriends was covering the ER that night. It was great to see her as she had been off for 8 weeks as she go COVID-19. She told me it was the worse experience of her live. No matter what she did she simply got not breath properly.

In any case, she decided to X-ray my foot just to be sure I didn’t have osteomyelitis in my foot bones. I thought it was over kill but, humored her. Next thing I know and nurse comes in to start an IV and the lab followed right behind. Both were preparing to stick me. I quickly informed them I had a port and there would be no sticking me but they were welcome to use my port. Next the doctor is telling me I had osteomyelitis of my foot. I got admitted to the hospital. I received IV antibiotic one right after the other for 48 hours. Definitely, the timing tight after my infusion that turns off my immune system want’t helpful.

I got home yesterday. I pray my Lord let’s this be the last oomphs. Welcome 2021 to my world. 😷. 🦶🏻 🤪 👨🏼‍⚕️

#RheumatoidArthritis #psa #ChronicIlless #ChornicPain #Crohn ’s Disease #autoimmune Vasculitis #Pressure ulcer # #DiabetesType2


Finally! #Osteomyelitis is done for

After almost 4 months which included weekly blood work and doctor visits every few weeks, I have for the 3rd time, at least temporarily, defeated Chronic #Osteomyelitis . Make no mistake, there’s a chance I’ll have to fight this battle a fourth time. But for now, I celebrate this victory.


Living a 22/7 Home Life #Osteomyelitis #Depression #Clostridiumdifficile

I’ve now been cooped up at home 22 hours a day, 7 days a week pretty much since April. Thanks to osteomyelitis, I cannot go chasing storms — the one thing I came to Oklahoma to do. I’ve had to watch from the sidelines as my friends nab storms, have fun and enjoy themselves.

Me? I’m sitting at home, infusing one antibiotic to kill the osteomyelitis and taking a second one to counter a possible C. Diff infection. It’s gotten to the point it has literally broken me mentally, about as bad as I felt in 2019. I lashed out against this awful infection both via social media (which I’m not proud of) and in texts to my friends where I was decidedly less PG-13. Do I feel even a little better? Just a smidge. Am I still angry at osteomyelitis for ruining my spring? You bet. Will I pull the nose up, come out of this bottom and feel better? Probably...but if I don’t get the hell out of this apartment to do something fun on Wednesday, this whole thing is probably going to break me.

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Why Insurance Limits on Supplies Aggravate Me

If you remember my article about my recovery from sepsis, Fournier’s Gangrene and osteomyelitis, you may remember I had to have a colostomy put in in order to help keep an ongoing pressure ulcer clean. What you don’t know is that prior to that, in 2008, I had a urostomy created to drain urine. This was put in in the middle of my body, after an initial placement on the right side of my body kinked off and I had my second bout with sepsis. This would present a challenge when it came to my colostomy.

You see, my urostomy’s location is such that it’s in a fold of my abdomen. That means that ostomy pouches don’t stick very well because as I move around in my daily life, they come loose. In fact, most of the time I don’t even try to wear that pouch, and only use my colostomy pouch because that one is absolutely a necessity. (I use Depends for incontinence, so I can change every few hours as needed. Ironically, what I’m talking about currently doesn’t apply to incontinence supplies like adult protective underwear.)

So, here I have the issue. You see, insurance being what it is, they have limits on how many supplies they’ll pay for in a month. In my case, the Department of Veterans Affairs Spina Bifida Program which pays for my care will allow my home health provider to send 20 ostomy pouches a month. (My Spina Bifida was connected to my dad’s Vietnam service in the 1970’s.) With my unique situation, that’s not nearly enough for me to get through a month! Not even remotely close. I have to jury-rig a solution for the next few weeks or until I can get another delivery, and that’s unacceptable to me.

And this is why I am writing this, after running out of ostomy pouches for about the 5th month in a row (or, ever since my most recent hospitalization). I hate insurance. I hate their arbitrary limits. I hate how they require authorization. I hate the waiting in limbo to get more of the supplies I need, or finding a supply delivery on my doorstep only to realize that something I badly need, isn’t in that delivery. I’m so mad right now, as I write this on a Sunday morning, I can’t see straight. Particularly in this time of a global pandemic, whether it is private insurance companies or the government, nobody should be limiting the amount of supplies provided to their beneficiaries.

I realize this is an expensive proposition. But, we’re in unique times. This calls for thinking outside the normal box. This calls for significant changes. Let’s stop forcing people like me to adapt to their policies, and let’s start adapting the policies to the people.

#Sepsis #Colostomy #HealthInsurance



at just 16.
I went on a school camp around central Australia. just 2 weeks. came home and all was okay, my back was only a little sore. two weeks later went on another school camp this time hiking. 85km. got back and 5 days later I wake up unable to move, 2 days later. emergency tell me your fine it’s just a back spasm and send me home. the next day I’m back this time in an ambulance. maybe it’s not a back spasm now. maybe she had a fracture or osteomyelitis who knows? send me to a city hospital where they still don’t know what’s really wrong. radiographers not agreeing over what my scans are showing. no one knowing what’s going on all while I’m in a bed feeling helpless unable to even move. at this point I’d rather be at school forvever then be like this any longer and that says something. especially for me. 5 days later it’s a fracture. the next day no it’s not it’s osteomyelitis. this went on for 4 weeks until they decided I was fine to go home with an inconclusive diagnosis. suspected osteomyelitis and a suspected spinal fracture in the L5. boy were they wrong about that fracture. fast forward 4 weeks and a nuclear bone scan happens. no fracture. back to square one. what is it. 3 weeks later CT scan shows something that the doctors can’t figure out. my bloods are normal everything is normal but there’s this thing that’s isn’t right and they can’t figure out. why. I’m 16. I wanna go back to school. it’s VCE. year 11. I already spent my whole summer in bed. maybe went to the beach twice but couldn’t walk on the sand or swim in the water. I live near the water. it’s literal hell. the water is my safe place and I can’t even get to it when I needed it most. I still do. I just want to be figured out. what’s wrong with me. phone call from the doctor. he can’t figure it out. sounds like he’s giving up. I just need someone. please help. another scan shows a brain cyst what more do I need. they haven’t told me anything about it yet so let’s hope it’s nothing bad. I’m telling myself it’s nothing. they say it’s probably nothing to do with my back or the major weakness in my right leg. I guess we’ll soon find out... maybe. I do t keenly know what to write and I know the punctuation and everything is wrong. this is for me. to say what I want to say. get it all out. if you’ve read all of this, I would like to say thank you. I hope you are okay and having a much better day then me because honestly today’s been really bad. but hey that happens. I hope your doing okay and your day is better then mine and if not that’s okay I’m sure tomorrow will be better. anyway. cya for now.

#BackPain #Undiagnosed #tired


I’m 24, I was a nurse and now I understand I can physically no longer do this. Any advice from others on new career paths? I feel lost! #Fibromyalgia #Pain #Nurse #Career #help #lost

I’m at a crossroads and am doing working with OT, PT, and a pain specialist to get back to work, but I feel like I no longer know who I am. I have no desire to go back to nursing. I feel lost. Any advice? Anyone changed careers? #ChronicPain #young #HealthAnxiety #Work #Jobs #careerchange #MyofascialPainSyndrome #PolycysticOvarySyndrome #vitamind #Osteoarthritis #Osteomyelitis #MyofascialPainSyndrome #IrritableBowelSyndromeIBS #ChronicIllness


RSD? "Life as you knew it is over"

My story begins on a beautiful day on June 5, 2006 when myself and two ladies that I worked with at that time were heading to WV to clean up a cabin and do a little sight seeing on a little quant town in which one of the ladies was from. After breakfast at a gas station, mini mart and small diner we went out to the pick up truck we were riding in and I got up on the back tire so I could get to the cooler that was in the back of the truck and when I went to step back off the tire I hit uneven pavement and I went down to the pavement backwards off of my right leg. I knew it was bad but I didn’t have any clue! #RareDisease

Making a long story short my stay in WV was anything other than pleasant. I broke my Tib/Fib, tore my ACL and shredded my Meniscus in my right

leg and knee. This was June 6, 2006 but it would be about a week later before anything could be done Then came the surgeries, of course plates and screws. Then came the surgery to take all that out when my body rejected it, and my ACL was too damaged to do anything at that particular time

and as it turned out nothing could be done with it period. Physical Therapy was next and of course there was an issue my knee swelled up like a

basketball. Back to the Doctor and then to surgery again, this time the Meniscus had been shredded so now that I was working it the knee

wanted that damaged tissue out and that is what was done and then back to Physical Therapy.

Hoping this was going to be the last issue I was deeply disappointed when a terrible pain started creeping into the left side of my knee but as

the pain became more intense my knee started to swell and then something new, a fever. Back to the Doctor, then to the hospital to drain the

knee. Here is the kicker, I was now beginning the fight against Osteomyelitis (bone infection) and one more thing trying to keep my leg which

I had no guarantee that this would happen. My life became engulfed with “IV Antibiotics” and all the medical supplies that goes with it. This was

done in my home, round the clock and administered by myself through a central line that had been placed in my chest in another trip to the


So far I have said nothing of what my home life entailed in that I had a great position where I worked and I had a husband at home. In 2006 we

had been married 11 years, we had moved 3 times and we had a “family” of three Chihuahuas. All I can remember about those long lonely months

since we lived 13 miles over a mountain that took 30 minuets to drive, was fighting with the insurance companies to one, keep paying my

medical bills and number two keep some kind of pay coming my way. I also remember no help and no visitors. My goodness I remember that

feeling like it was yesterday.

When I did go back to work my job had to be filled by someone while I was gone, and now I was in a leg brace and on light duty. I could not

have done the job let’s face it I was broken, and as such I had to take a $3 an hour cut in pay that hurt after working my way up over the course of seven years starting with 6 months over night, yes that would be the Graveyard Shift. As a matter of fact I was on that shift on 9-11, one of the creepiest

nights ever.

In my state of VA at the time it took filing for Disability and getting turned down which took approximately a year then a Lawyer takes the case

and then it took a few different Doctors to make a statement upon examination, that work would not be in the future, and that would be presented

to the Judge of such cases. However once Reflex Sympathetic Dystrophy was presented, with proof to the Judge he made the decision that no

more tests were necessary, and that he sincerely sent his “best wishes” as he knew first hand what CRPS was all about. Now when it was apparent

that staying in the working force would be another life changing event if at all, I went back to college, this time on line and two months after I was declared by Social Security to be permanently disabled, I graduated with a 3.85 GPA with my Bachelor’s of Business Administration Healthcare

Management. I was so proud of myself and only two people came to my picnic and one was my husband and the other is my best friend even today.

This is not however the end of my story. I am sure you have gathered by now that I had to become able to at least take care of myself which became increasingly harder as time went by. I started getting sick with spells of COPD that ended up with me being put into the hospital with pneumonia

first once then twice it was every Spring and Fall. Weight and fluid were becoming serious issues and my Doctor could not find any triggering

factors until in 2013 and swelling in my legs would not subside with medications, and I was on oxygen 24hours a day October came and so did my

bi-annual Fall bought of COPD Exasperation and into the hospital I went however when the rescue squad took me in through the Emergency room

I was coughing so bad that I ended up having a Myocardial Infraction (a heart attack). This changed everything including the Hospital I would be spending the next 14 days in, having very extensive testing on my Heart. ‘Go Figure!’

On December 24, 2013 surgery entailed a Triple Bypass or called “The CABBAGE” which has been ‘quite the ORDEAL’, which doesn’t even

begin to describe getting through this procedure. Notice I called it getting “through” and not getting “over” this particular event as I just

had my 5th year anniversary of the surgery and had to have it checked out with an EKG and a Stress Test, which I am happy to report my

heart is as good as new. I have lost 35lbs and the Type ll Diabetes is gone; my Blood Pressure is under control BUT with my chest wired

together there are certain things that are painful such as the simple task of putting lotion on my chest, laying on my stomach or laying on

either side and Bras are pretty much a thing of my past. Now Cardio Rehab really was getting me in shape and feeling pretty amazing

considering everything that had happened over the course of a year UNTIL….

The next chapter begins and this is no joke December 26, 2014. I was coming home from picking up Chinese food for supper and there

was a beautiful sky as the sun was setting and I ran into a little traffic at a bridge where people were being impatient, at around 5:00pm

wanting to get home after their days’ work. A beautiful evening, a warm car and the smell of food filling my sense of smell right down to

my hungry belly and for a split second I went to the “Nod” and when I suddenly snapped back in, somebody three cars ahead of me going

across the bridge, as I was about two thirds of the way on the bridge went very quickly across the lines on the ramp and scurrying back down to the interstate when my car seemed like it was drifting forward so I went to slam on the brakes and yes” ladies and gents” I did, I slammed on the

GAS by mistake! I can still smell the stench that came out of the Airbag then I realized that I was still pushing on the brakes as hard as I could

push my foot on the floorboard and not the brakes at all. By the time the Fire Department got me out of my Jeep I was aware that things were

not right with my body, a few fractured ribs on the left side of my body and of course the right leg (the one with the CRPS) but this time

I fractured my Carcaineus (my heel) and my right ankle. So I end up, two days later with crutches however my instructions were “no weight

bearing” for 6 weeks and then we will see how it goes.

At the house, husband there to help me and my very first trip to the bathroom and the crutches are a very “foreign” object to me and I am

trying to maneuver around on one foot with these crutches in my hands and I start to go over towards a very tight space between

the toilet and the bathtub. My husband standing there and I can still see the look on his face, arms stretched out and utter bewilderment as

he has no clue on how to help me without hurting me because of my heart surgery and oh by the way when I hit the tub I fractured two

more ribs, therefore I was off to another facility an adult rehab, not even a happy place. I couldn’t even lay in the bed without being in tremendous


As part of my pain management for my CRPS I was and still am on Pain Medication but I do go to a regular Pain Center. My Primary Care Physician

and my Orthopedic both felt that I would be in more pain that they could handle as my treatment would be for a Lifetime instead of just a few

weeks. Also in 2007 through endeavors of the Pain Center’s Neurologist, I had a Spinal Cord Stimulator(SCS) implanted but while I was in the rehab and the fact that I just couldn’t get around to do the recharging maintenance of the SCS I had to rely on pain medication. I go to the pain center every month

for random drug tests and medication consultation along with my prescription refills. While I was in the rehab they told me they had no one that

could administer my type of meds and I could not get to my appointment and no one could go in my place to get my medication so the other ting

I got to experience was full blown withdrawal, it was no fun and not pretty.

There are other procedures and other illnesses that have occurred and it always seems like I don’t even what to ask the question “What’s Next?”

as soon enough something will happen, for example-I have shrunk 3 inches in height in the last 5 years; last year on December 13th, the day after my birthday, I took my German Shepard out back after I had been gone to a Dr. appointment that morning and I did not see a chicken on the other

side of a bush but my boy did and he bolted while my hand was attached to the leash. I went VERY quick and VERY hard to the ground and ended up with a fractured pelvis and shoulder so just in the last month I have actually back to being “not broken”.

By now the title to my story should seem pretty evident as everything that has happened in “my past decade” have been life changing events. I also

seems to me like I take little pieces of each event forward in my Medical Collage called my life. As for the title of my story this was said to me by my Neurologist as he was giving me the gravity and depth of this horrible disease and I remember being so lost in thought of the concept of the whole

thing trying not to get totally consumed by it. Life as I knew it was over the very second I broke my leg; however I see it as evolving as I change

with each event. I don’t have much of a social life and that is one of the reasons why I am telling you my story, but I find a lot of joy in just the simple

things in my life. Sure I get depressed that is another reason I am here but in 2007 I came up with this signature statement that I tell myself

almost every day as it gives me hope and all I have to come up with is a little joy and it fills my heart and spreads like a wildfire to my soul.

So as I conclude only a small but forever growing story and as I have finally put it into an actual format and I am actually going to share it

with other human beings then this has been another serious growth step, You’ll try to find a little joy in your lives even if only for a min no

matter what it may be, take a chance, it may just warm your soul. Here is my statement, just something to think about:

“We go through our lives living for our ages but life teaches us that it that it is the

Quality of our lives that is both ageless and priceless”

tjbird 2007 #COPD #CRPS #CRPS #ChronicPain #RareDisease


Miracles happen to everyday people!!

I’m a female, 61year old, daughter, wife, Mother, Nanny. Sounds so normal, doesn’t it? I thought I was normal til 2012 when I was walking with my girlfriends gabbing away about nothing. Suddenly I got a kink in my left groin area and dropped to the street. Able to finish the walk, I knew something wasn’t right. A few hours later, I was in so much pelvic pain, I vomited, passed out and was rushed to the hospital. Flatlined on the table, they revived me only to rush me to the operating room. The ultrasound could not find my gall bladder. Emergency surgery was necessary. Still extreme pain in my groin, so many test!! Diagnosis, staph infection of blood and bone, #Osteomyelitis. I was told less than 1% survive!! The infection took homage in my pubic synthesis and surrounding tissue. That explained my pubic pain. During my 2 months in the hospital, I had a drainage tube inserted, and eventually my entire pubic synthesis removed. My life since, has been anything but enjoyable. With a compromised immune system, I now have #Lupus SLE and MCTD. If I thought my pain could not have gotten worse with my groin area, I was in for a huge surprise. Fatigue, painful joints, skin so sensitive to touch, pins and needles in my legs, swollen, water retention, and worse of all skin rashes. Every year I tell myself that this will be my year!! I’m still praying. Gratitude is the most important thing in my day! I have so much to be grateful for. I have such a loving family. A support system of girlfriends who are here for me 24/7. Most of all, I have the most amazing grandchildren a Nanny could imagine! I’m one lucky women to be alive!!