hla b27

Book Review

                          

The Gifts of Imperfection: Let go of who you think you’re supposed to be and embrace who you are.     

By: Brene Brown

I often avoid “self-help” books because most of them seem to apply to the unmotivated person who can’t figure out how to focus and stay on track with their lives. These types of books frustrate me because lack of drive is the absolute least of my problems. I have tremendous drive, want, and desire, but with auto-immune disease I can’t find the energy, self confidence, or acceptance that I need to move on. I struggle much more with the ideas of how to live with myself as I am now and accept the things that I cannot change vs. motivation.

I was impressed with this book as it felt like rather than being preachy or telling the reader we don’t have our sh*t together, Brown is taking the journey with us. She states specifically in the book that first off it is NOT a self help book, and secondly that she is exploring this journey within herself while writing the book. This brings a strong element of honesty and genuineness to the writing; a sense that she is simply sharing her story, thoughts, and experiences almost like a conversation.

The book is a quick read (138 pages), I read it in two sittings.  This allowed me to absorb everything quickly and not span it out throughout a few painful weeks. She tackles some big topics like perfectionism, self-kindness, spirituality, vulnerability, authenticity, shame, joy, stillness, faith, intuition, self-doubt, gratitude and living wholeheartedly. I was most impressed with her exploration of definitions for some difficult ideas. In particular, since I have been sick, I have struggled with the ideas of Hope and Faith. I loved her definitions, she describes hope as “a combination of setting goals, having the tenacity and perseverance to pursue them and believing in our own abilities.” She goes on to add that tolerance for disappointment, determination and a belief in self are at the heart of hope.  Her definition of faith also resonated with me, she explains it as, “a place of mystery, where we find the courage to believe in what we cannot see and the strength to let go of our fear of uncertainty." 

This book was a great, short read, that brought up a lot of noteworthy topics and Brown explores them with the reader almost as if she’s brainstorming with you and simply offering up her ideas. I felt her words to be universal situationally, because its about working on your perception of self and however that affects ones life will be different depending on your own struggles. 

                     

Ankylosing Spondylitis

Ankylosing spondylitis is an inflammatory disorder of the axial skeleton, peripheral joints, and extraarticular structures. Over 90% of pts have HLA-B27, a protein on the surface of WBCs in the presence of infection. It is 2-5 times more common in males, and onset is typically in the 2nd or 3rd generation. 

Pathogenesis

  • Occurs at entheses (attachment points between tendon, ligament, or capsule and bone) 
  • Inflammation
  • Bone erosion
  • Syndesmophyte (spur) formation

Clinical Manifestations

  • Vague low back pain radiating to buttocks
  • Bony tenderness
  • Enthesopathy
  • Constitutional symptoms - photophobia, blurred vision
  • Extraarticular symptoms 
  • Morning stiffness

Physical Examination

  • Spinal stiffness
  • Loss of lumbar lordosis
  • Increase of thoracic kyphosis
  • Stooped posture
  • Decreased chest wall expansion
  • Schober test: detects limitation of forward flexion and hyperextension of lumbar spine

Diagnosis/Lab

  • No direct serum marker
  • Elevated ESR, CRP, Alk. Phos
  • Radiographic: “bamboo spine”, sacroilitis, pseudowidening of SI joint, sclerosis/fusion
  • Diagnosis at early stage is important to limit irreversible deformity

Treatment

  • Physical therapy - exercise is the best treatment!
  • NSAIDs
  • Anti-TNF
  • DMARDs
  • Referral to rheumatologist

Complications

  • Spondylitic heart disease
    • Aortic/mitral regurgitation

anonymous asked:

I have been recent diagnost with lupus, osteoporosis, firbromialga and hla b27 and more... Any ways for my joint pain my mother who is a nurse works with cancers patients and told me they use marijuana ointments on there problem areas. Now I'm straight edge and strong for it I don't even like taking any (nasids) inflammation and pain medicines, I feel it will make things worse. But what could I do? would using the ointment not make me edge anymore? I told my mother no and that was out of the...

Anonymous said:

 …question. Idk what to do.. I’m lost I’m frustration

You are undoubtedly facing a more complex challenge than the majority of the straight edge community will ever face in their lives.

Thought I would put this out for discussion - what do you guys think?

If anyone has a medical background, what kind of other options or alternatives exist?

Be respectful!

I’m pretty sure no one who is “healthy” understands that being sick is a full time job. I don’t have the time or energy to think about fun things or have the capability or freedom to spend time chatting about nothing. When your chronically ill your days are completely regimented, from the moment you wake, around managing your symptoms and self care. There is no room for fun or the unnecessary. My days consist of sorting out supplements and/or medications for the day, making a concoction of medicinal teas to sip on throughout the day, preparing meals by scratch from the few foods that I can tolerate, feeding the animals, completing whatever house chores I’m physically able of accomplishing that day, meditating, stretching and/or fulfilling other therapeutic exercises, connecting online with others who are struggling, documenting side effects of current medications/treatments, trying to decide and decipher what is a new symptom and what is a side effect, resting, resting, resting, worrying about finances since I had to quit my job due to my illness, getting outside for a prerequisite 15 mins of sun for vitamin D supplementation, going to therapy, emailing doctors to make sure my new symptom isn’t going to kill me, making and rescheduling doctors appointments, mourning and grieving for my pre-illness life, spending time on the phone arguing with insurance, researching the next and best in the medical world, both conventional and alternative, to try to cure myself. This is one example of a day in the life of someone with Chronic Illness. And these are the things I expect, not to mention the unexpected that is thrown at you everyday that you can’t plan for. And all of this, up until recently, was in unison with actual full time employment. This is not normal, this is not living. I can’t even remember what “healthy” people do. I can’t imagine what one does with so much freedom, free time, and energy to do things simply for pleasure.
—  wdoregon (via blog hlab27 and still standing)