Saturday, August 8, 2015

The invisible disability

I have suffered for many years with being sick. Knowing that my immune system was screwed up but had NO idea how to get answers.

Remember, I've been in the medical "field" for almost 15 years and have had to be my own advocate. It's not like the doctors that I've had find many answers.... or go looking for them - it's usually dealing with the symptoms at hand and managing what I'm dealing with at that time. It's hard to look at the whole when you're looking at the incident.

I received confirmation today about the IgG1 deficiency and now I want some answers.... to see what symptoms fit with what or what further examinations need to be requested and advocated for.

I had a "tiff" with the hubby tonight on the phone - how my disability is completely invisible and is difficult to understand. When you're disability is physical, one can understand when you're in pain or you can't do something. If you have cancer or something like that it's understandable that you're tired or can't do something. But when you can't see what's wrong it's harder to grasp or understand.

My husband says to me - well if you lost weight then you would have more energy...

he's ABSOLUTELY correct! HOWEVER, that's easier said than done when every time I go to exercise it increases my bumm infections and pain.... so I can't exercise.

He complains that I sleep all the time.... well I AM tired!!! Somedays it's just everything to sit on the couch and do NOTHING!

My hubby can't believe that I've been on the computer all evening doing my "research" and can't I just wait for my appointment in OCTOBER for answers from the specialist?! .... to which my retort was..... "have doctors provided me answers or given me all the information or what sort of things are we going to do next???? NOT VERY OFTEN!!!! It's usually I who is inquiring about things, asking for referrals to certain ppl, asking for certain tests..... while I'm lucky that I have a family physician who listens to me and certainly is willing to give what I ask, it's me who is initiating everything.

I hate that I have to wait almost 2 months til I see a person who specializes in this, and I doubt that treatment will be commenced when I see the physician. I'm sure that I'll have more questions, very little answers. UGH!!!!

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