Primal Scream

[Loria Chaddon]

Anybody else feel like letting loose with a savage primal scream from time to time in response to the stresses involved with this?  Maybe if we all did it at once, the medical community and anyone controlling the studies and research for Rheumatic diseases would hear us.

Just a funny mental image for you guys.  The startled look on their faces at a collective primal scream. :roll-laugh:

[linda]

Funny you should post this today. After waiting 4 days for my rheumy to get a message from me, thru his nurse, that I needed to switch to a different sleeping pill- (at my appt Fri he wanted me to try doubling the dose of my current rx, if that didn't work I was to call him) I finally got a call from him. We discussed some options and decided on a new med, he said he would have his nurse call it in for me immediately. He asked me for my pharmacy and the phone number; and that info is also found when they pull up my file on the computer-it's a Walgreen's pharm.

15 min. later I get a call from his nurse, who has messed up everything she has ever been told to do for me-including getting paperwork for fin. aid for remicade therapy causing a 2 MONTH delay in starting that med. I was in the shower and she left this message, “I have called your prescription for sleeping pills in to the Fry's pharmacy”. End of message. Not only did she not use the pharm she was given, she called it into a pharm that I have never used, and did not even specify which Fry's she called (there are about 30 Fry's in Tucson). I called the office and got their usual leave a message and we'll get back to you voice mail- which means another 3-4 business day wait.   :headbang::headbang::headbang::headbang::headbang::headbang::headbang::headbang::headbang::headbang::headbang::headbang::headbang::headbang::headbang::headbang::headbang:

This kind of thing has happened so often that I'm ready to go postal. (I had a CT scan Mon that was supposed to be quick, no contrast, in and out in 15 min – 2.5 hours later, 2 iodine drinks, an IV with leaky tubing and blood everywhere, AND a 10 min smoke break for the tech-I'm not kidding, and I was finally done.) ANNNYWAAY, I left a message with this nurse and stated that if I didn't hear from someone in 45 min I was coming down to the office- and guess what, I got a phone call almost exactly 45 min later. Situation resolved, but I hate that I have to be mean and nasty to get anything done- it's not my normal MO and is very stressful.

I know that none of this has anything to do with AP and is not a problem confined to Tucson, health care in general has declined in many places, but I was so over the top that I felt like screaming, just like you. I don't even care if anyone reads this, it just felt good to write it!
BTW, the CT scan was to diagnose a liver tumor that may need to be removed by a liver resection, so it was no big deal, right? No stress there at all!

Mean as ever, but not happy about it, linda

[DianeWI]

Hi Loria,

hahahah  Good one!!!!!;)         I have been there many times with the docs.  A few times I would have loved to haul-off and clobber them, but I self-talked myself out of that one. 

The last few years, my scream would be at my sisters and my parents.  I have been ill most of my life, and none of them get it.  At family reunions they tell my cousins that, “Diane is just plain nuts!”   They talked to the wrong cousin,  who happens to have CFS/FM and MCTD just like me.  She came to me and mentioned that “your sisters don't have a clue what you are dealing with!”  and more blah blah blah.  My issues are probably more comlpex them most because of my chemical sensitivities.  IT was better for a time, and now its getting worse again.   When I get hyper-sensitive, I stay out of crowds and away from perfume, laundry softeners and whatever else that makes people stink to me.  I do not go to family functions anymore.  They are going to believe what they want anyway.  

Two days ago, my aged 90 yr. old mother called me up and chewed me out.  She wants me to forgive my sisters for what they said, and come to the house for a mothers day party, and have a good time!”  dah…    They are healthy, I am not.  I am chemically sensitive, they are not.  They work,  and in their eyes, I'm a stay-at-home bum.  Nobody can bring me to tears faster then my mother.  I got off the phone and sobbed.  Here I am, 53 yrs. old and feeling like 4, being scolded by my mommy.  Sheesh!  Does it ever quit?

Diane/WI

[lynnie_sydney]

Diane – I am so sorry you have such an unsupportive family. It makes life so much more difficult, especially when you're struggling with a longterm illness. However, forgiveness is not a bad thing to practise. It lightens the load that we carry around and, so, effectively you do it for yourself, not the recipients! In my own family, I have learned to accept and say (to myself) 'I love you and I dont like your behavior'. Works for me because you're right, it never ends, so you need to find some way to reach acceptance of it. Maybe think of it as part of your road to healing. In terms of your chemical sensitivities, it sounds like salicylates may be (at least part of) the problem. I'd recommend a very good website generated by the woman who runs the allergy clinic at one of our country's top teaching hospitals. It has a wealth of really good infomation on it. I'll paste the links below. Be well. Lynnie

http://www.fedupwithfoodadditives.info/


http://www.fedupwithfoodadditives.info/factsheets/Factsalicylates.htm 

 

 

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[DianeWI]

Thanks Lynnie,

Interesting site.  I could add so many more to the site, like all petro-chemicals. 

I was on the elimination diet for ten months and did not fair well on it.  It made me twice as sensitive as before.   I got to the point where I could not leave my house without filtering my air.  Not a good place to be.

Thanks!

Diane/WI

[Loria Chaddon]

Diane – Hugs.  I am sorry your family is like that.  *shaking my head* It always surprises me when the people who are supposed to love us do things like that.  I have to admit I stopped talking to my step-mom some time back because of the way she treated me.  It is not really fair of them to be that way.  🙁  All I can stay is be strong and know that there are others that understand, at least here.

And hey, let loose with that primal scream from time to time.  It really clears the sinuses. :roll-laugh:

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