WG days!

[cjhnsn29]

Does everyone have good and bad days with trying to keep up with WG? I feel like everytime I turn around it's something else to deal with. Does anyone with there RX have there blood pressure go up and down?

[Jaha]

It can be very unpredictable, it's so annoying not being able to plan anything. That's why people on here call it the disease that keeps on giving. Yes my blood pressure is affected by my meds, some kinda side effects thing.

[cjhnsn29]

Jana, you made me smile a bit. Never heard it be called the diease that keeps on given. I am glad it's not just me.no offense:) it's good to be able to talk to people who can relate.a lot of people don't understand unless they are going through it. Thx for reassuring me that I am normal (well normal as I can be) :-)

[annekat]

Sometimes I feel like we pay for our good days with bad days. Yes, hard to plan things or make commitments. People just have to learn to understand. It does get better though, with time, as you recover from the worst of it. Hang in there.

[Dirty Don]

The good/bad days seem to alternate in no certain rhythm. The spread between good and bad appears to lengthen as the drugs and time pass. You'll be fine, just keep at it and don't let up.

[gilders]

I feel like everytime I turn around it's something else to deal with.

Heart failure, kidney failure, hair loss, tinnitus, deafness, sinusitis, chronic ear nose throat and chest infections, early cataracts, other eye problems, severe frequent headaches, haemochromatosis, fibrosis of liver, osteoporosis, high blood pressure, low blood pressure, weight gain, weight loss, severe cramps, Mulder's click, rheumatism, Morton's neuroma, neuropathy, vasculitis, immature odd shaped blood cells, pneumonia, septicemia, pulmonary embolism and chronic, severe fatigue, weakness and lack of energy.

That was a list of some of things off the top of my head that I've suffered (and in most cases still suffering) from since diagnosed with Wegener's. Admittedly some such as Haemochromatosis isn't Wegener's connected, but most of the problems/illnesses are.
So yes I also feel like there's something else to deal with everytime I turn around.

It's not a list that I want, or feel deserving of any sympathy. It's a list that needs to be looked at with a view of how lucky I am to have gone through and still be going through so much, yet I can still live a relatively normal life. I'm not fit enough to work or do 90% of the things I used to love doing, but there's still so much I CAN do!

I'm sure most others on this forum could write a list of illnesses and problems that they have to deal with due to Wegener's as long, if not longer than mine.

One person that certainly is deserving of sympathy at the moment is Phil with what he's going through and Alysia for her tremendous effort of supporting Phil!

[annekat]

Gilders, reading your list, and thinking of Phil, I feel very lucky so far to have suffered as little as I have.

[cjhnsn29]

For the love of God Glider thought my list was bad, since I had enough getting hit. I only have the lungs,mouth, eyes, saddle nose, chronic pain, sinusitis, neck shoulders. That's just the body parts your list made me realize as I was told it's the diease that keeps on giving. Glad it will get better.

C.J

[daystarr8]

Yes but the best way to deal is to get up every day treat the things that are needing attention and enjoy the rest of the day. It has to be hit head on first thing or depression sets in for the day. Also it does help if you need anti depressants don't be ashamed to take them. People all over the world take them for the littlest reasons and they aren't battling WG everyday like we are. Live positive. Be positive. If something is sick like the nose go to bed telling your mind to heal it. Wake up knowing it's better. Doctor it with moisture and live your day The power of the mind can do wonders hope this helps

[mrtmeo]

I noticed the ups and downs of my mom's blood pressure due to prednisone.
Last year, she was on 60mg prednisone (3 days) and tapered over 2 weeks.
After that, her bp and blood sugar was up down with extremes for about 5 months.

[MikeG-2012]

Sometimes I feel like we pay for our good days with bad days. Yes, hard to plan things or make commitments. People just have to learn to understand. It does get better though, with time, as you recover from the worst of it. Hang in there.

I completely agree with you Anne, and I don't think I could have said it better myself!