ENDO Messages for September, 2006: Re: How do you work?

Re: How do you work?

From: Barbara (anonymous@obgyn.net)
Fri Sep 29 17:36:15 2006

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Maura,

I feel for you, and I'm sorry you are having such a rough time. I'm sure many of the ladies on here have similar experiences. I myself do work full time and it has been a struggle. Time off from work for sugeries, pain, etc can be difficult to explain to supervisors and you may not feel comfortable discussing these issues with colleagues. I do now have a supervisor that while he does not really know what is wrong with me etc, he is a very compassionate person and tries to work things out to allow me the time I need for such surgeries etc. He is even very understanding on those days when I just cannot force myself to go in (which is rare, I usually drag myself in no matter how awful I'm doing). When I first developed endo and didn't know that's what it was I had a supervisor that did not understand, and he counseled me to manage my absences better. This same supervisor panicked and called an ambulance for me at work one day when I got extremely ill from the pain. I had simply asked my coworker to call my husband to come take me to the clinic (at the time we were stationed overseas). I have found that it is best for me personally to be up front with my supervisor about the fact that I have a chronic medical condition that often flares up and can cause me to miss some work and does require surgeries. I am in a training program which moves us from organization to organization, so I have had to switch supervisors often, and believe me that is an awkward conversation sometimes. I have been surprized at how many of them actually respond very positively. It is good that you can continue your courses online, I was not so fortunate but it sounds like a Godsend.

As a matter of fact, more employers now offer some type of telework options to their employees and that might be something to consider as you choose a career path. I work for the government and they do have policies for telework, but not fulltime, and it's hit or miss as to which departments choose to allow it at all.

I have considered that at some point I may try to teach for an online university if I get to the point where I am just not able to go into the office anymore. I have had 3 surgeries in the past 2 years and am about to have another in November, and I am hopeful that will be the last of them for a few years.

There are other ladies on here that have better information about the possibility of getting disability, but to my personal knowledge it is not easy to get for endometriosis.

I would also like to mention that several ladies on here have had some pain relief from dietary changes. Try reading Endometriosis: A Key to Healing Through Nutrition by Dian Shepperson Mills. I am reading it right now and have cut out wheat and cow milk products to see how it affects my pain. I have been doing this for about 2 weeks so far and I do notice some improvement.

Sorry this is such a long post, but I really understand the frustration this disease causes and how hard it can be to work while suffering its affects. Don't feel like you are alone, we are here for you! Feel free to email me if you like: bclowser@hotmail.com

Best wishes for pain free days to all!

Barbara

At Fri, 29 Sep 2006, Maura wrote: >
>I am 23 years old and on September 1 was scheduled for lap surgery which
>turned into a C-secton procedure to remove 3 large endometriosis tumors
>off of my ovaries along with dozens of adhesions and endometriosis spots
>throughout my reproductive area. I have been misdiagnosed for years and
>finally can put a name on the pain I have been experiencing. Like all
>of us, I went through the terrible emotional rollercoaster this disease
>causes. Everyone thought it was in my head and there were constant
>whispers behind my back. Along with severe endometriosis I was
>diagnosed with the chronic pelvic pain that all too commonly accompanies
>the disease. I am in constant severe pain. I have been out of work for
>5 months. I am also normally a full time student trying to obtain a
>bachelors degree but the past 2 years have been lucky to pass 2 classes
>a semester due to absences. I now take internet courses. I have been
>struggling financially because I have no income and bills to pay (If it
>weren't for my boyfriend I'd be in real trouble) and do not know how I
>am going to be able to work 40 hours a week again. So how does everyone
>with endometriosis do it? I can suck it up but what quality of life is
>that? Does our government have anything to help support us besides going
>on disability? I am just lost and looking for some guidance. No one
>else seems to understand.
>Thanks,
>
>Maura
>Pittsburgh, PA

--
Barbara Clowser

Next message: Kerry-Ann: "Re: Lap Surgery"
Previous message: anonymous: "no period even though i stopped taking the pill"
In reply to: Maura: "How do you work?"
Next in thread: Alyson: "Re: How do you work?"

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