My WG experience

[DISNEYLADY]

Katwoman, I just noticed that you just joined in Oct.2009, me too. My hubby use to have a lot on the ball like you, but now has some bad days. He gets very impatient, with life and not being able to do things like he use to. and to top this off we moved in the past 2 weeks and many things that were simple to solve were magnified and very stressful for him. This just makes him feel worse and the next day he sleeps a lot. We are not sure when he became ill, but I know illnesses realy took off over a year ago. I think he finds his brain doesn't function like he thinks it should, and like you many don't understand the illness, and many ways we don't either. I know we have to get him into some other docs that know more about his feelings and about WG.
Do you know that Andrew our Administrator, for this system lives in Canberra , Australia?? He has been a great help to me in learning how to use the support group. Funny I don't know how I ever found it and got on line.
Hope your bosses' wife finds something out for you in Sidney> Keep us posted on how you are doing and feeling. What meds are you on. My hubby isn't taking anything for the wiggies.
you are doing great for what you have to live with and I hope this form helps you like they have me.

[katwoman]

Disneylady, thank you for your kind words, I am sorry to hear your husband is also dealing with WG....I'm only 36 and it has really knocked me for a six! I can understand your husbands frustration with memory and stress, I don't handle stressful situations at all anymore, just go into melt down (my poor boss has seen me shed too many tears over trivial things).

Andrew has been wonderful and has got me the name of an Immunologist who has WG experience, which my doctor has done a referral for and I am waiting to hear from his clinic about an appointment, its only about 2 1/2 away from me so even better then sydney.

In 2008 had a minor flare (just affecting my sinus area) so the only meds I have been on is Bactrim, which now doesn't seem to be doing much, so will be interested to see what Immunologist has to say, as like many WG's I hate the thought of going back on Pred's, so my fingers are crossed.

Give my regards to your husband and I shall keep in touch, please keep us up to date on your husband and it sounds like you are a wonderful support for him.
Kat

[Sangye]

Many people don't know it, but depression can cause memory problems. Pred does, too, and pred also can cause depression and tearfulness. Sometimes it takes a very experienced psychiatrist to sort out what it pred, what is grieving due to Wegs, what is sheer physical exhaustion manifesting as emotional exhaustion, and what is depression. They're all tied together, each one worsening the other.

[Doug]

Yes, the strongest of us, if honest with the weggies on this site, will note that tears and stress that collapses us into a pool of self-doubt and inaction are part of what your deal with. I didn't have the tears so much, but the inaction and inability to deal with stressful matters definitely happened to me, katwoman!

I'm looking forward to hearing what you hear from your immunologist. It sounds like you have the same situation I do: any doctor truly qualified to treat me is at least an hour's drive away, and at most only 4-1/2 hours!

[katwoman]

Doug, it is so good to find this website and know that I'm not alone and finally people that not only can relate, but understand!!

I am eagerly waiting to hear from the immunologist clinic regarding an appointment. I have some good friends who have offered to drive me to the appointment and so the 2 1/2 hr trip each way will be a lot less stressful....lol I constantly consider situations by there stress factors!

[Jack]

As I've posted in the past, I've changed from the "nothing can defeat me" sort to someone who gets stressed when they have a few things that need sorting out. I can also cry at the drop of a hat given an emotional situation.

[Sangye]

Kat, I do the same thing. I call ahead to ask about walking distance between the parking lot and offices, etc.... Once I'm inside a place, my eye automatically starts searching for the nearest chair for when I need to sit down quickly. I'm constantly conserving my resources.

If I stand at the reception desk to fill out a form, I won't have the strength to walk back to the exam room. If I walk part of the grocery store instead of taking the electric cart, I won't have enough energy to get back in my house!

This daily evaluation of everything can be exhausting, especially for newly-diagnosed. I've internalized it so I probably don't even realize how much mental energy it takes.

It's something that people without chronic illness can't possibly understand. They just get up, walk across the room or stand to chat, etc... without giving a moment's thought to if they'll have energy for the next little activity. On the flipside, I'm grateful for it. I appreciate the ability to do anything and really rejoice when I make progress.

[elephant]

After my lung surgery ( lung nodule removed), I had no energy for about a month. It took about three months to feel normal. It was one of the most painful surgeries I ever had. I had alot of surgeries...but this really knocked me off my feet. I would walk in the gorcery store and start to feel short of breath and dizzy and think, "how am I going to make it thru the store." The problem was I pushed myself too fast and realized I needed to slow down. It's a shocker to go from energy to no energy!