Infusion Friday and then..?!?!?!

Friday I had my second dose of Rituxan.  For some reason, my neurologist has me at 650, rather than 1000.  It went well, with taking 15 mg of Baclofen prior to the infusion starting.

Two more treatments; and then what?How-to-Get-Rid-of-a-Charley-Horse

Today the stiffness in my calf muscle pain is pulling a Charley Horse.  But, I’m not taking the Baclofen; because using it made me sleep the weekend away.

Baclofen is used to treat the stiffness and muscle rigidity people with Multiple Sclerosis  often have.  It works, but it leaves me in a haze, a dream-like floating feeling that renders me near unconscious.  Diazepam is even worse.  It leaves me with the float- feeling along with abject confusion.

Tell me about your treatment plan, if you have an autoimmune disease?  What’s worked?  What hasn’t?

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Abnormal is the new normal

toilet hat  My SPECT scan results came back listed as NORMAL.

However, in the report, the radiologist wrote, “Does she have kidney problems [Yes, I do]? Does she have urinary problems [Yes, I do].

This NORMAL SPECT scan from University of Toledo Medical Center goes on to state that there are still three areas of my brain with less than normal blood flow, but that they cannot tell if it is better, worse or the same.

Therefore, lack of blood flow to three areas of my brain is the NEW NORMAL.  wtf?T

I can’t tell you how many times I’ve had abnormal test results detailed, with the overall report being labeled as NORMAL.

Stinky stuffgross

Okay, this is really gross…so all you squeamish folks, just exit now.

I was having hiney problems. Constipation and diarrhea doing happy dances that were no party for me. Anyway, the lab gave me a toilet catch bin that looked like a hat from a cartoon.

The direction say to put the catch basin in the toilet, then poo.  Then, be sure to take scoops, with this toothpick-sized spoon, of any areas where you see blood, slime, mucous, etc.

Yikes.  I might never eat pickles again.  Undigested pickle parts covered in clay and blood smeared poo that smelled like a toxic waste dump.

I had to fill several vials.  Then take them in.  Ewwwie.  I saw the blood.  I saw the tarry black and orange clay colors and chunks of undigested food and…the results?  NORMAL.  NO BLOOD.  What [literal] crap is that?

Invisible

Having an invisible illness is degrading because doctors, family, friends, co-workers just think you’re lazy, crazy, or just a hypochondriac.

Especially since test results are only labeled abnormal only if you have a gargantuan tumor or are clinically dead.

Hell is going to the ERemergency

Going to the ER is an exercise in futility.  It is better to stay at home in pain than to del with ER staff.

At least here, they simply don’t care.  If you’re in pain, you’re labeled a drug seeker.  If you are having numbness or loss of sensation or trouble walking or thinking, then you are mentally ill.

Other than massive bleeding, limbs cut off, and/or body parts visibly smashed, you fall into one of three categories: drug seeker, mentally ill, and/or hypochondriac.

Nasty makes us worse ~ Humiliation even more so

Ironically autoimmune diseases get worse under duress, which is exactly what the medical community and other do to you when they label you lazy or crazy or just difficult. Read about life with an invisible illness.

Their treatment of us makes us sicker.  But we are labeled crazy.  Unfair. Ignorant.  Small-minded.  But anyone with autoimmune illnesses that doesn’t have something doctors can see that is HUGELY [Donald Trump’s word] wrong, is belittled and humiliated repeatedly.

Some doctors are the most knowledgeable ignoramuses. I sometimes imagine a sleep-deprived resident working in radiology or pathology, just red stamping everything not HUGELY wrong, as normal. So they can get back to their Snicker’s bar, texting, or browsing eBay.

Share your experience. Make your voice matter

Tell me about your experiences with having physical illnesses that you know are real, that are labeled as you being bat shit crazy.

Be sure to share the perps names and affiliations so we crazies can avoid them.

Do you realize, there’s more of us than them?  It’s time to take a stand.

Studies have shown that as high as 80% of institutionalized people and people labeled as psychotic, schizophrenic, and the like are really people that need immunotherapy to be 100% well.

Instead they’re heavily drugged, existing in misery.

I encourage you to buy, read and share Susannah Cahanlan’s book Brain on Fire. Just DON’T BUY ON @AMAZON.  More on why later.  Buy from Half.com , eBay or your local bookstore.

Susannah shares her experience with having psychotic symptoms that weren’t psychiatric.  Luckily her family wouldn’t accept the “she’s just crazy” line.  They pushed for answers and got help.

Susannah had  Anti-NMDA receptor encephalitis, NOT   psychosis. Her immune system was attacking her brain.

It is time we have our voices heard.