#chronicgrrllls

[breatheducky]

Chronic pain hurts

Friendly reminder: Just because people with chronic pain are ALWAYS in pain, doesn't make the pain any less...painful. It just makes us better at hiding it. If we're expressing the fact that we're in pain it means we're hurting more than average. Saying something like "you're used to it" is just cruel. The end.

[breatheducky]

I'm not invisible.

[breatheducky]

Everything you wanted to know about my lifestyle change.

Today is one month since my LDN gave me my life back*. In that month I've walked roughly 333,000 steps. now for the *. I want to clear things up. YES. I'm still disabled. I still have heart problems, I always will. I am on the maximum dose of my heart medication and still experience symptoms daily. I still have Chronotripic Incompetence. (another heart problem, caused by being pacemaker dependant my whole life) What that means is it takes me over a mile of walking before I can get my heart rate up above 100. And due to my pacemaker settings, my maximum heart rate is 130. I still have scoliosis and cannot sit or stand for long periods of time. I still have widespread pain. I still have ovarian cysts. I still have dizziness. I still have severe brain fog. I still have severe anxiety and depression. I still keep my wheelchair in the trunk of my car and have a set of wristbraces handy at all times. I'm tired of hearing people say I'm "cured". That said, I am REALLY proud of myself, REALLY loving the LDN and REALLY appreciating all the support!

[breatheducky]

Frustrated

I'm so fed up with looking for a diagnosis that I almost don't even care anymore. I tested positive for an auto immune disease but we don't know which one, or if it's false. The 3 big contenders are MS, Lupus & Lyme. My last Lyme test was negative but the Lyme experts say you can't rely on those when you're not seeing a Lyme specialist or "Lyme Literate doctor" (LLMD). Basically the longer you've had it, the less likely you are to show up positive and this has been going on for a good 8-10yrs. So. ya know. My last Lupus test was also negative but my Rheumy straight up told me he's not ruling it out because tests are notoriously unreliable I fit a lot of the symptoms. Most concerning is the possibility of MS. My neuro appointment is the 24th and my electrophysiologist has already cleared me for the MRI, provided it's done at HUP and he's there. Today even my therapist expressed concern that I might have MS and she originally didn't even think it was possible. But today she admitted that too many things are lining up and she doesn't like how it looks. So yeah. That's my update.

[breatheducky]

Important

https://themighty.com/2017/04/chronic-disease-photos-facebook/ It bothers me that so many people are embarrassed of worried about being labeled as "attention seeking". That said, as open as I am about my chronic illnesses there is so much more that I keep to myself, or only share with my support network. Raising awareness is NOT attention seeking. When medical things take up so much of your life, you tend to talk about it a lot. That's just common sense. The end.