sciatica

This is my first time posting on something like this, so I’m kinda freaking out with anxiety.. I haven’t been social in a really long time. I have severe agoraphobia and I’m an introvert. It’s just my hubby, three kitty cats, one big pup and my love, Sora who’s a Yorkie. He never leaves my side. Anyway.. #Depression #Anxiety #BipolarDisorder #OCD #ADHD #PanicDisorder #EatingDisorders #ChronicPain #sciatica #Grief #BodyDysmorphicDisorder

And that thing is sorting out my meds and putting them into dosset boxes for the week. Ugh. It’s so boring and tedious, but it has to be done. I know that some pharmacies can do it for you, but the last time I trusted them to do that, they cocked up and I ended up being really unwell. So it’s just simpler that I do it myself.

It’s just annoying. All the medication you see is just for seven days, and that doesn’t include some of my painkillers. The Paracetamol, Naproxen, Dihydrocodeine and Amitriptyline are put in a different box with four slots in a day.

I get so many “friends” and “family” members that tell me I should try cutting out some of my medications. That I should try this diet or that diet, or that I should exercise or do yoga. That I should switch to more natural remedies, and that I should meditate.

It makes me so angry! I swear they think I enjoy taking so much. I’m only on 15 different medications, when there was once a time when I took 21! I hate taking them. They give me bad acid reflux, dry mouth, dizziness, decreased appetite, etc… We’ve tried taking me off most of them, and my quality of life DRAMATICALLY reduced. I could barely sit up without fainting, and my bladder pain was excruciating, and my joints were so bad I’d sometimes cry when I had to walk for longer than 10minutes at a time.

Sorry. I just needed a bit of a rant, I guess.

On a completely unrelated note, I hope you’re all okay and staying warm now the weather’s turning cold. I’m actually having to sleep with thick, fluffy socks on. And I hate sleeping with socks on with a passion. But I have bad circulation and thus very cold feet even on warm days. Now it’s colder? Nope. I need toasty toes, or I’m worried they’ll fall off. 😂

Stay safe, lovelies!

#chronicillnesswarrior #ChronicPain #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #NAFLD #InterstitialCystitis #Diabetes #Migraines #sciatica #Depression #BPD

Ten months after first asking my primary doctor for a rheumatology referral, I finally had an appointment with one yesterday. It didn’t go as well as I had hoped. I have a lot of different symptoms and pain in every area of my body. I have seen a neurologist, gastroenterologist, and orthopedist. I do have tendon tears that are causing pain, but it doesn’t account for most of my symptoms. My ortho and physical therapist think there might be a systemic tendon issue. My doctors ruled out many things with lots of tests. They only want to cover up symptoms, so I was persistent for an answer and finally got a referral to a rheumatologist. Unfortunately, he was pretty dismissive. He said he read my medical records from my primary care, he asked me questions, and he gave me a physical exam. He asked if I had a prostate exam (I am a transgender man) and didn’t know most of my current diagnoses. I also realized later that he didn’t ask me about my cognitive symptoms or check anything but the areas I already know there are tears and push on a few of my vertebrae. I asked about pain management because I am allergic to corn and derivatives which are in most pharmaceuticals. He didn’t know anything about compounding medications or herbal supplements. He recommended physical therapy and to “figure out what works for you.” At the end of the appointment he said he was ordering 4 blood tests. Repeating the 2 inflammatory markers my doctor has tested a few times and were normal, a different RA test, and one to check for muscle degeneration. He said that if those come back normal than I don’t need to follow up with him. He said to follow up with my ortho because my pain is likely due to injuries and micro traumas. And to see an endocrinologist, even though I already had a lot of hormones checked with my primary and doctor who prescribes my testosterone. And to continue with the heart monitor I’m wearing this week and the cardiologist because I could have postural tachycardia. I was nervous and felt pressured to say that plan was fine.

I got the blood work results via the lab’s app today and they were all normal. I am so upset. The doctor said someone would call me with the results. I am not a doctor, but I know there are other tests, blood and otherwise, that can be done to further investigate my symptoms. I’ve been researching my symptoms and connective tissue diseases for over a year. I feel like most medical professionals don’t care enough to dig deep into what’s going on and just pass me off to others or give me meds for symptoms.

I don’t know what to do. Do I tell the person who calls from the doctor’s that I want to follow up anyway and ask the rheumatologist for more testing? Do I go back to the ortho and have him check all of my joints, back, neck, hands and feet? Do I ask my primary for another referral to a different rheumatologist, when she didn’t even want to refer me in the first place? The original referral said “low suspicion of rheumatic cause, patient requested eval.” I don’t know.

I am just so exhausted, feel defeated, and want to give up.

#Undiagnosed #ChronicPain #ChronicIllness #CPTSD #Depression #GeneralizedAnxietyDisorder #Anxiety #ObsessiveCompulsiveDisorder #AvoidantPersonalityDisorder #SuicidalIdeation #CarpalTunnelSyndrome #TriggerFinger #Bursitis #Tendinitis #rotatorcufftears #labraltears #sciatica #Migraine #IrritableBowelSyndromeIBS #SleepApnea #Asthma #GastroesophagealRefluxDisease #Allergies #Folliculitis

I was told that I should come and say hello. My name is Tavia, short version of Octavia. I am married. I live in bed ( if you can call that living..) due to the pain of several chronic pain conditions /injuries from a serious car accident I was in 23 years ago. I am now in my 50s. I deal with a lot of loneliness and isolation and some depression about losing my life and most of the people I cared about to an existence in pain.

#EhlersDanlosSyndrome #Fibromyalgia #AnkylosingSpondylitis #SpinalStenosis #ChronicMigraines #sciatica #Bursitis #Nervedamage #cervicalfusion #cervicaldiscectomy #spinalbonespurs #Hypothyroidism #PeripheralNeuropathy #numbness #Insomnia

The theme for February's Mighty Art Room is process, so i thought I'd show something that is taken photos of at the time. It's quite old, but generally the way i most paint. From sketch to finished piece. This is one of the Fairy Godfather, which is my original character that I've written many books about and hope to publish one day when the health and pain stars align! This is a painting done digitally over a pencil sketch. I use a program called Painter which is very much like painting in real life, just less messy! 😅 I'm not very good with layers and things so yeah, but somehow it gets done.

Well off to finish chores so i can enjoy the olympics tonight! Yay! i hope everyone has as good a weekend as possible! #ChronicMigraineSyndrome #ChronicPain #ChronicIllness #Art #ArtTherapy #AnkylosingSpondylitis #SpinalStenosis #DoubleVision #cps #ComplexRegionalPainSyndrome #sciatica #nervepain #BipolarDepression #Asthma #Anxiety