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Left appointment dazed and confused

I had a recent appointment with my chronic pain clinic team, Doctor, physiotherapist(Patrick), pharmacist and nurse. I had 2 minutes to fill out 2 pages of pain scale papers to rate my pain over the last week. I don’t feel comfortable with pain scales as my pain changes so much through any given day. The doctor was late and was in and out several times during the meeting so Patrick (physio guy) asked the questions and made the decisions. I told them my newest med hydromorph contin helps with 2 things, I can fall asleep at night with less pain and even though I wake up in pain through the night I can get back to sleep. Other than that I get out of bed in terrible pain all over and can barely walk from the pain in my feet. After that the early part of the day is the easiest then by early afternoon the pain all over starts to get really bad. I said the hydromorph contin doesn’t work in the afternoon. I only get a bit of relief if I take a Percocet and I can only take 2 a day for breakthrough pain so when they wear off and it’s quickly the pain gets bad fast and continually gets worse until I get into bed.

Patrick said it sounds like I’m doing better. Did I hear right? I said I’m not. I’m back to where I was when I started there 6 months ago. I told him it feels like my body is getting used to the hydromorph really fast and not having the intended effect. He said I just told him I was doing better. I said I still suffer most of the day. I’m not getting the relief they think I should be getting. He ignored all that and told me I’m doing better than I think I am so we’ll keep my meds the same. I wish I could hook wires from my body to his so he could feel my pain.

The doctor comes back so I quickly ask for a perscription for clonazapam with an increased dose because I’ve had to increase the Dexedrine I take for chronic fatigue and the clonazapam really helps with the side effects. He asks why I don’t ask my family doctor. Family doctor says only chronic pain clinic can do it. I get my perscription then I ask for a script for arthritis compression gloves.He doesn’t know what they are. I had to explain that to him too then he was gone again before I could say anything else.

The nurse says Can you go now we have another appointment. Odd way to finish an appointment. I didn’t have a chance to go over my notes. I go to the waiting room to wait for my perscriptions and realize I forgot to ask the doctor to put R after clonazapam. I ask the receptionist to please ask the doctor to add it on and apologize.She is very annoyed but asks him. He says there’s no difference without the R. I told him that didn’t work for me. He’s annoyed and waves his hand and says whatever. Not very professional. Family doctor says only chronic pain clinic can write stronger perscriptions but it’s a PT making the decisions.
Are we doomed to live in pain because of a disfunctional health care system. Do I even bother to go back there?

#chronic fatigue #chronic pain #oa


Fibromyalgia pain

This morning the Fibro pain has again reared its ugly head- I hate when it starts my day,instead of ending my day( tho that's not nice to be hurting at bedtime,either!). Guess it's the below freezing temperature that's got it going. Don't you( those with fibro) just hate it when the fibro takes over even Before the day starts? It over comes the arthritis,the swollen feet & lower legs,the fitful sleep from the nite,and tired mind from having to deal with it & everything else on a daily basis. Even the pretty sunrise this morning gets hit. Big Sigh. Oh well,such is life when you are used to hurting All Over from an Invisible Disease. #Fibromyalgia ,#RA ,#oa ,#PTSD ,#GAD ,#Bipolar 2,#GERD ,#Insomnia ,#high Blood Pressure,#Allergies to most Everything,#sinusitis chronic,#Teeth problems( likely from meds been on for so long,acc.to dentist),#"covering" how I really am feeling,#bad dreams that carry over into the day,#restlessness ,#So many Meds,#dry Eye Syndrome,#Dermatitis -chronic,#Headaches ,Short term memory loss left over from ECT treatments,#Fibro Brain Fog,#sad ,#Overeating when illnesses take over too much,##Poor Self-Image,#Stagnant motivation,#chronic Talking to Myself-even Out Loud,#Talking & writing too much,#worry ,#Thinking of others instead of me,#people Pleaser,#Procrastination ,#Poor money management,#Ignoring important signs & Symptoms.


The "New Doctor" Dilemma

I think one of the biggest injustices we face, as rare as we are, is being told to expect that our Primary Care Physician, the person in charge of "managing our health, tests, procedures, results, etc." will actually feel responsible for our progress, or even want to.
...."We' are going to be 50x more complicated than their average routine check-up! "We" aren't ever going to fit into that 15 minute slot that they have for us!!
"We" can't get to the bottom of our conditions, if they keep bailing out on us.

.... There needs to be another Specialty. Definitely not the Rheumatologist, who often knows a tenth of what we will.
There needs to be a Category of Interventional Physicians for Auto-Immune and Connective Tissue Disorders. Don't look away, but Yes, it would be like House and his team.
I chose a new PCP last September, an MD, a DO. Both, which she assured me made her uniquely more experienced to help someone like me. Her biography on line sounded great. I told her that I could help her learn more about these rare Syndromes, and she would become an invaluable member of our medical community!
... But, as I started to discuss me, and handed her (the most pertinent tests and documentation), my backstory of tests I had already gone through, she got that "Deer Doctor in My Headlights Look".
You know the look...the haughty ones will laugh in your face. They might even call a couple students in, to meet you or observe. The less experienced ones will realize that their bluff will be called. Whether by you, or the next Zebra.
... She nods with understanding.
.... She gives my files to the staff to copy.
.... She spends way more than my alloted time, typing every detail into my patient history.
I'm excited!! She's listened!!
She has me do a couple of those Yoga-ish arm to shoulder stretches before I leave, and promises to be in touch as soon as my very first labs come back.

But, when I next went to my Pt portal, her notes read, " Diana has a VERY COMPLEX CASE". I could feel her crawling under a rock to avoid me. All that hope I had, for just one more PCP who wanted to lead, or even just be on "Team Diane". *Poof* Gone.
I've just lost valuable time that I spent searching for this new Specialist, or lining up in the queue for months to get in to see them, having anxiety, IBS, and gritting my teeth as I walk into yet another new Drs office, for the same Damn result.
The negligence I feel, and their deficit in current, updated, relevant education, is terribly disheartening.
I know I will probably never get ahead of the curve of Western Medicine.

#EhlersDanlosSyndrome , #sjogrens Syndrome, #Polymyositis , #Dermatomyositis , #Fibromyalgia , #GAD , #MDD , #DDD , #RA , #oa , #AnkylosingSpondylitis , #mixedconnectivetissuedisease, #MCTD , #Rh -Disease, et al.


Like in every dream 💭... #RA #oa #Fibromyalgia #degenerativejointdisease #hollowbonesinfeet

Every night I dream about walking and running. I miss feet and ankles and knees and legs and hips that used to let me run around the house dancing, outside in fields and parks and Lincoln Park Zoo my favorite place to walk, especially when you move past the Conservatory the beautiful green field... joy doesn’t seem to cover it!


Not sure ho to deal with my mean cousin saying how out of shape I am and look at her she could run circles around me and she’s ten years older then me

She was very overweight even 2-3 years ago so to make fun of my weight talking about how in shape she is is cruel and hurtful who can offer me support and love and advice? She really hurt my feelings I didn’t ask for a pandemic to make me gain weight nor did I ask for being out of shape it’s a very personal thing I have challenges she does not have such as pcos fibromyalgia and scoliosis and siatica. So to make me feel bad for my pulling my back out yesterday from having to lift a heavy Amazon box by myself I don’t have a boyfriend or husband to help me. What can I do to help myself? #PolycysticOvarySyndrome #Fibromyaliga #FibromyalgiaDiagnosis #Fibromyalgia #PinchedNerve #Bipolar2Disorder #BorderlinePersonalityDisorder #BorderlineStigma #PTSD #CPTSD #CPTSDinrelationships #MyalgicEncephalomyelitis #pcosfighter #Aspergers #AspergersSyndrome #Anxiety #ADHD #Exercise #Yoga #BingeEatingDisorder #Art #Depression #Photography #ArtTherapy #Sports #frisbee #Walking #Love #Hugs #Faith #god #CatholicChurch #Church #Support #SupportGroups #Music #Chatting #Chatspace #Disability #Spoonie #FlareUps #flare #BipolarDisorder #BipolarDepression #MightyFeatures #MightyBookClub #MightyQuestions #TheMightyTakeaway #MyMightyMonth #TheMighty #52SmallThings #52smalltasks #CheckInWithMe #Upallnight #Selflove #Disabled #TheSecret #TheBible #goodthoughtsyourway #Positivity #sad #lonely #ObsessiveCompulsiveDisorder #oa #HashimotosEncephalitis #MyalgicEncephalomyelitis #goals #Hope #DBT #Dbtskills

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How long is too long to be going to therapy?? Should you ever quit!? #PTSD ,# Bipolar 2,# Schitzoaffective disorder,# OCD,#Anxiety ,#Depression ,# GAD,

I have been going to Psychiatrists,Psychologists,Mental Health Licenced Therapist's(current one also a Professor at a local college),since 1984, more on than off.ive been asked why I keep going if I'm not cured by now,why continue??? #RA ,#oa ,#Fibro ,#Neuropathy ,#GERD ,#disc ,nerve problems in neck,lower back,#Torn Labral muscle rt.hip,#non - ankylosing spondylitis ,#sjogren 's syndrome,#Reynauds ,#chronic sinusitis,#chronic Insomnia,#Chostochondritis ,#Eczema /Allergies,#Photosensitive to sun,#dog lover,#high blood pressure,#Believer in coloring therapy at home,#Bookworm ,#Schitzophrenia as 1st diagnosis in mental health illness,#Love Words,writing.,music (eclectic interests).


Invisible Disabilities #oa #Diabetes #RA

I was in a parking lot, and I couldn't find a disabled parking spot, so I just parked in the nearest 'regular' spot. My decal hangs from my window, but this time I forgot to remove it and the reason why is the EXACT reason why I prefer to have a tag instead of a license plate. I have OA and RA and some days it's torture to even do the smallest things. This day I just ran out of milk and needed it for dinner(and a few other things). Long story short, a quick trip to the store turned into some middle-aged woman yelling at me about not being disabled and why didn't I park in the abundant parking for "supposedly disabled" people. After explaining that ALL the disabled parking was taken she slowly slinked back into her car, muttering under breath, and pulled away. As bad as I feel, I'm all for confrontation at ANY time. All disabilities are not visible, you cannot see RA, OA, diabetes, cancer, AS, eating disorders, etc. So just because you see a placard or license plate doesn't mean the person you see driving or entering that vehicle will have something you can see!! Saying nothing costs zero dollars and depending on the person may save your life!!

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