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Spousal understanding?

Posted , 3 users are following.

Tr1957
Tr1957

I been diagnosed with wg for 19 mos. now i have fatigue,shortness of breath, nueropathy,carpal tunnel of both hands diagnosed as due to wegeners. I work commercial constuction i work any from 40-76 hrs a week .i come home extremely achy and tired especially in my legs and feet it actually feels about a 9 out od 10 on the pain level most nights. Now my wife who worked for 25yrs in yale- new haven E R plus 30yrs as a paramedic , she now works a breast surgery cancer center, she is constantly telling me that i am over dramatizing my symptons and using them to justifying lying about at night.she also says i use the forums as a way to justify myself but to her she says its nothing more than finding excuses because none of her cancer patients end uphirting like i suppoedly do i tried to get her to read some of the comments in the forum s maybe she could see and understand what its like for me but she says going to the internet you can find you want to hustify my position its funny because shes won numerous awards and accolades for patient care and sympathy- i guess husbands arent in the same catergory as her patientssmile

0 likes, 3 replies

3 Replies

  • Dani_G_in_Aus
    Dani_G_in_Aus Tr1957

    Posted

    Hi Tr1957, sorry to hear you have joined the WG club. I don't want to cause issue between you and you wife but having fought WG since I was 14 (24 years) and breast cancer twice I can assure you that the cancer and treatment was much easier to bear than the WG. I have just in the 

    art year fought another battle with the WG where it ate away the lining of my sinus cavity and the pain was unbearable. I am still taking morphine a year later and will be for some time to come. The tiredness and aching is not imagined. These are the symptoms that indicate disease activity and are some of the first questions my specialist asks me. It does get better and you can live an almost normal life with it. Keep vigilant and take your medication. There are new things being discovered and Tia.led all the time. My specialist keeps me up to date. Stay positive, and good luck!

  • tara00929
    tara00929 Tr1957

    Posted

    I have had WG for 18 months now. I have had around 5 months off work in total. The fatigue is so hard to cope with and like you the pains in my legs cause problems. I have gone back to work but I am finding it hard. Sorry to hear your wife is not so understanding. The survival rate of people with breast and testicalur cancer is higher then the likes of people with WG vasculitis people and health professionals are just not aware and there still is not a lot known about vasculitis. Although it is getting much better and the outlook is good for patience if they get a diagnoses and support as early as possible. WG has damaged my hearing and I have a hole in my spetum due too. I am currently having Rituxmab treatment hope that helps me. Vasculitis UK are a support check their web site we did a 5k walk along the Thames to help raise money for research into this horrid disease.I am 44 and have two young boys WG is something I would love to live without but I just go with the good and the bad days. I know the pain you describe I have felt nothing as bad in all my life childbirth and broken leg does not even touch the sides when WG rears it's ugly head. Last year it was painful to brush my hair my head was so swollen. But I will keep fighting I am not beat. It's not a compitition between Cancer and Vasculitis but vasculitis can do just as much damage if not treated and caught early depending on the individual case . Keep going look oft them good dayssmile 
    • tara00929
      tara00929

      Posted

      Sorry should read keep going look for them good days smile
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