New member

[Julezee]

So what are the chances that I felt good enough to take my dogs for a
drive, check for something at a local thrift store, then meet two
amazing Sarcoid Champions at the registers. I've had Sarcoid for at
least 10yrs, maybe more. Diagnosed last spring after going to the ER
for a headache that was unbelievable. I'm a 53yr old retired RN. Long
story short, the ER Doc had no explanation for my pain. Monitored my
O2 SAT while on room air. It was 74. Docs wanted a positive tissue
confirmation for Sarcoid. Had 5 biopsies, finally got one from around
the base of my trachea. Have granulomas in Lymph system, Lungs, Liver,
Spleen, Brain & Eyes. The search continues. My husband is a
Pharmacist. I've exhausted the knowledge base at the Bigger Healthcare
provider in the state. Am so grateful to know the names of the other
Docs in the Salt Lake area. I live in Centerville. Strong family
history of Autoimmunes.

Am doing Neurontin, Prednisone again (was almost off it). Last
hospitalization week & a half a ago. My electrolytes have been a big
problem for me. First kidney failure three years ago. Coma, dialysis,
then back home with no diagnosis or reason. In hindsight, it was
Sarcoid for sure. Too much calcium has been problematic. I don't even
drink milk much but my Vit D factories snarf up every bit, then hang
onto it. I am type 2 Diabetic. Kidneys very delicate now, no longeer
able to do Metformin. Can do Lantus insulin.. Can't touch ibuprofen
now either. Have a strong narcotic prescribed, but right now it is not
cutting it. In the hospital it was mass hysteria regarding my pain
medication. The pulmonologists believed I'd quit breathing. They have
obviously frightened my Internal Medicine doc based on our
conversation last week. That along with the State breathing down their
necks threatening to pull their licenses or charge them with capital
crimes. They need to protect themselves, I understand that. In the
hospital they cut my medication dose down to 1/6th of what I am
prescribed. I don't take that much usually, but their lack of
education is obvious. I cannot do much tylenol either. I need to keep
my liver.


Thanks for this group.

[Lizi]

Julezee:

Thanks so much for sharing your story!! We all have similar
beginnings and one big thing in common -- sarcoid!

I am very interested in getting an actual meeting together soon! I
have some sarcoid specialists (M.D.s) at the University who have
offered to come and speak to us. I would like to know how many of you
would be interested in attending such a meeting... I know we all have
good days and bad days and that sometimes it is hard to get out, but I
really feel it would be beneficial to have a chance to meet face to
face. Sarcoid takes a great social and emotional toll on all of us
and support from others in the same situation would likely be
extremely beneficial.

Please let me know how many of you would be interested and we will try
to accommdate the group in a centralized location.

If any of you wish to discuss this option with me privately, please
call me at (801) 856-7776 or email me at lizita...@msn.com.

Thank you so much and I hope you are all having a good day! Take care
of yourselves!

Lizi