Pain and Hair loss

[angeldancer]

This is just a vent for being in a lot of pain since April.  It hurts to eat and to just drink water.  Yesterday I thought  I would just take a shower and try to feel better with the water hitting my skin.  Well I let the water fall down on me from head to toe and then realize that something was crawling on me.  It turned out not to be crawling on me but going down my skin.  MY HAIR was falling off my head and down my body to the tub.  How can this be?  I feel like I have a nightly visit to the hospital and now I will do it bald.  What the Heck?  I know our skin is so fragile but man after getting my hair back after chemo and to lose it all over again is like getting suckered punch.  I guess the pain is worst than losing the hair but what is going on in my body again that now I have itchy skin from head to toe and extreme pain in my left abdominal.  If I eat the pain increases triple fold.  If I drink water it increases double fold. 

I don't think people understand living with so much pain is so difficult.  My daughter said the other day that it sounds like I am aspirating.  Really, ok I guess on soup and applesauce when I feel like taking the pain.  I did some research but honestly it could be anything triggered by a flare.  My pastor looked at me on Sunday and told me to go to the hospital.  I told him all they do is put me on morphine.  It never solves whatever is going on.  I stopped going to church because of this very reason in not wanting people to see me in pain or the changes in my skin.  I got another appointment with the doctor on thursday, just saw the doctor last thursday.  What do I do to get them to figure out what is going on?  My doctor just called like while I'm typing this and said for me to go to the emergency room and tell them to help me.  Ugh! She wants me to go to the one by her which is not close to me.  I guess I have no choice but to go get morphine but it would be nice if we can detect the issue and solve it.  I can live on a juice diet I guess.  Anyone having these types of issues let me know.

Do I ask them to check my thyroid, liver, spleen, stomach, I need an MRI, Ultrasound, I am already scheduled for a PET CT.  I don't want too much more radiation.  Ok.  Through this writing I am gaining a little more composure.  Get it together Angie (said to self).

Peace and blessings

[Dolly Dimples]

So sorry to read this post Angel dancer, as if you hadent been through enough already..

    As you have said it maybe from all the chemo and stuff youve already had.

        but  I say yes,  you do need to ask questions! tell them exactly how you are suffering, and definately need further investigation and help..
We all understand your pain and frustration, so many on this site pulling their hair out for want of help !
       I can only pray you get tough and get so help , even if its someone to talk to..
         God Bless Dolly x

[araminta]

I'm very sorry you are going through so much at present.   I don't know how long ago it was that you had chemotherapy but perhaps Dolly is right that the pain and other issues stem from that.   If you know the exact medication you were on you could google to see what the after effects might be.   I've read that chemotherapy can have after effects lasting many months, including lower immunity.

Of course it's not good that you should be living on juice!   In the UK there is a product called Complan which contains vitamins and other nutritional essentials - if you don't have that exact thing in the US I'm sure your pharmacy will have something similar, maybe it's worth enquiring.

I hope ER is some help, try to stay calm but assertive, not easy I know.   Keep posting to let us know how things are.   [Hug]

[angeldancer]

I have been admitted into the hospital. Seems like its my bile ducts and they are running test. I need to contact my rheumatologist to let him know.  Primary sclerosis cholangitis...if that is right is something that people with sjogrens..can get. Its crazy. I eat healthy I juice never smoked or drank alcohol. And now a new issue. Im praying for miraculous healing.

Angeldancer

[araminta]

Well I hope it's not primary sclerosis cholangitis, but at least people are finally taking your symptoms seriously.   When I googled PSC it seemed as though no-one is quite sure what causes it, so diet may have nothing to do with it.   I will be thinking about you and hoping you finally get some answers and proper treatment.