Skip to main content

View Diary: Worth (112 comments)

Comment Preferences

  •  MCS is a big one as well... (2+ / 0-)
    Recommended by:
    ladybug53, CroneWit

    ...she is very sensitive to most all chemicals.  I am too, but not like her.  

    For example, Pine-Sol.  OMG!  That stuff needs to be banned because it's toxic waste.  We went to a doctor's office one day and the walkways in front of the elevators in the garage had just been cleaned with pine-sol or something very similar.  I thought we were both going to pass out from the overwhelming stench.  But of course, that's one I think most people are sensitive to.  Didn't change the fact that she became extremely sick for a day or two after that visit.  

    There are many other things she's very sensitive too as well which makes prescribing many medications pretty tricky as well.

    •  Unpredictable responses to meds in CFS (3+ / 0-)
      Recommended by:
      ladybug53, Zergle, Hens Teeth

      is very common -- and is one of the reasons that the psych meds commonly prescribed in the US are not helpful (that and the fact that CFS is not a mental illness, it is biological.)

      I've been 'writing' to you in my head all day -- and because you invested the effort in writing, I may need to email you and/or do a follow-up diary to yours.

      Please read the Canadian Clinical Case Study I mentioned above!  It provides a reality-based description of CFS (including the fact that MCS often accompanies CFS).  It has a realistic symptom list, as opposed to the CDC's harmful experimental Case Definiton.

      A few quick thoughts, from the 'letter' I've been 'writing' all day --

      -- re: schooling/college:  Many colleges have 'distance learning', that could allow Mrs Z to take classes from home; also colleges are required to provide "reasonable modifications" to policies for disabled; some schools have ways (say, through 'continuing Ed') of getting college credit for life experience -- she may be able to get credit for what she's learned through her research (same goes for you, Mr IT Guy!); I understand completely about the 'invisible disability' part, and its accompanying discomfort -- but if she has to go on campus, get her a cane or an electric wheelchair (there are non-profits that can provide, or with Rx you might get one funded).  Not advising you to do any of this -- just more thoughts to put in the hopper.

      -- and re: moving -- I understand the seeming impossibility.  However, to think about -- MCS (not CFS, but probably immmune disorder) is recognized by HUD as a disability.  Mrs Z could apply for a HUD Section 8 housing voucher -- which might take a while, but with one you could move anywhere there is a Section 8-approved rental.  You could look for places with better climate, less mold/chemicals, in areas with Doctors who understand CFS (co-cure has 'good doc' list), and in a Soc Sec Court area which is more 'CFS-friendly'.

      -- and, re Soc Sec -- those mofos! (Sorry, always have to get that out of my system first.)  Yes get a lawyer, and try again (If Mrs Z is at all up to it.)  You have tons of documentation by now.  Tell the attorney about how SS told you you didn't need a lawyer -- that will be important.  Also, a few years ago, SS created a specific disability code for CFS, which requires SS to treat your case in a particular way (caution: be sure you learn about this and demand they abide by it.)  Also there is now a specific ICD code for CFS, placing it in the category of neurological diseases (if I remember correctly).  Ask your Dr to include that ICD code in Mrs Z's case file, along with all the others.

      Sorry this has gotten so long!  And of course what matters most is finding the things to do/ ways to do them that help and support Mrs Z best -- so feel free to toss my suggestions away!

Subscribe or Donate to support Daily Kos.

  • Recommended (136)
  • Community (56)
  • Baltimore (45)
  • Bernie Sanders (36)
  • Civil Rights (35)
  • Culture (26)
  • Freddie Gray (21)
  • Racism (20)
  • Elections (20)
  • Law (20)
  • Education (20)
  • Hillary Clinton (19)
  • Labor (18)
  • Economy (18)
  • Rescued (17)
  • Politics (16)
  • Media (15)
  • 2016 (15)
  • Texas (15)
  • Barack Obama (13)
  • Click here for the mobile view of the site