Many of us are Heading toward remission

[Sangye]

Barb-- I'm glad they checked for a blood clot. However, if you're still having such shortness of breath after that much ctx, something is wrong. It would be good to ask the Yale docs to consult with a VF specialist just to be sure. Yale is great, but they don't specialize in vasculitis.

Cindy-- I had to move cross-country in Oct '08 with 2 big dogs and a little bird-- all in one tiny car. I was in horrific shape. I also had to officially close my chiropractic office, even though I hadn't been back to work since mid-2006. It was like a nightmare. I had to make all the arrangements myself in addition to getting all my Maryland docs lined up and ready to see when I arrived. Two days before I was leaving, I didn't even have anyone to drive my moving truck. I was going to tow my car behind a UHaul with myself, 2 dogs and a bird cage all stuffed in the front seat! Thankfully a friend offered to drive at the last minute. I didn't have a place to live when I arrived, and had to stay in a motel with all my animals. Every day for a week I loaded them back in the car and drove around looking for a home. I was in excruciating pain and the Wegs was nowhere near remission.

So believe me when I say, "I understand." Please come back and let us know how you're doing. We all have plenty of people in our lives who either don't care or don't understand how tough it is having Wegs.

[Terri]

Hang in there Barbara. You can't see it now but it WILL get better. I was where you are several times. Good days, bad days. If you read back on some of these posts you will understand what we mean when we talk about a new normal. You will never return to your "normal" self, but you will find ways to cope and deal with the changes. I believe I have found the prednisone to control my body the most. Anything over 10 mg and I just don't function well. After I was diagnosed, it took me 8 months to return to work but everyone is different. Sometimes I wish I would have went for the long term disability. I have many bad days at work and then I am totally exhausted when I get home.
It is tough because it is so life changing and also the meds interfere with your emotions too.
I carry these words with me and read them often: Do not look forward to the changes and chances of this life in fear. Rather, look to them with full hope that as they arise, God. will deliver me out of them. He is my keeper, He has kept me. Hold fast to His hand and he will lead me safely through all things; and when I cannot stand He will hold me. God will either shield me from the suffering or He will give me the strength to bear it. I hope this can help you. Like I said, it WILL get better. Keep in touch because the support alone from this group can help you. I wish you better days ahead!

[Cindy M]

Thanks for all the kind words and understanding from everyone. I think I was just really tired and stressed out, things have been getting better. My mom called and wished she could be here to help me and I know she really means it. My aunt and cousin are going to help me pack my kitchen tomorrow. I also have quite a few friends and relatives coming on Saturday for the big move and to help clean. It's just been the getting to this point and feeling like a failure that really got me down. From some people I get words of encouragement and some understanding and then from others it is totally the opposite. But thanks again.

[pberggren1]

You are not a failure Cindy. Just look how far you have come. We can never do anything totally on our own. We always need help. Thank goodness you have friends and family close by to help you out.

[Doug]

Well "spoken" Terri- Nothing is more encouraging to me than to see people dealing with the worst of WG after I did start to come to the realization they can deal with WG and that the "new normal" is a stage you can accept and adjust to. Give yourself a gold star for your sensitive and accurate recognition that there are times we have to accept truly difficult things ( "Sometimes I wish I would have went for the long term disability. I have many bad days at work and then I am totally exhausted when I get home. It is tough because it is so life changing and also the meds interfere with your emotions too." quote of Terri's last post).

Old hands like Phil, Jack, Sangye, and the rest of us need reminders from time to time to help us deal with new circumstances of our own, and it is encouraging to see that others are growing into the next group of weggies who can add to the advice and encouragement they once needed when they came onto the forum. I think you are much too nice (more like a Jolanta or a Lisa Coffeelover or Phil) to be a nag like, erm, well, we nags know who we are! That's good, too. Among us there are many who can say just the right thing to each new question, and you've made the transition to Sage Advisor, which is the nice guy version of Nagger! Ha!

[Sangye]

You're hilarious, Doug.

[Terri]

I love you guys!!!

[Cindy M]

Thanks for all the good thoughts, the move went great. On the day of the move I ended up with alot of help. Lots of family showed up to help. I am now staying at my sisters until my duplex is finished being built. Needless to say that after all the packing and moving I have been pretty exhausted. My sinuses have been giving me alot of problems but I go on Feb 1st to the rhuemy for my monthly checkup so we will see how things are. I think my dog is more out of sorts than I am with the move. I am really looking forward to the new place.

[elephant]

Cindy so glad you got help with moving. You need to take a nap and rest. See if that helps....Hang in there....

[Sangye]

I agree-- rest, rest, rest. And when you're all rested up. Rest some more. Feb 1 can be a long way off, and if they need to adjust your meds that will take awhile to kick in, too.