Many of us are Heading toward remission

[elephant]

Barb, I'm sorry you are feeling discouraged. It is a fight all the way to get doctors to listen to us and getting the right care by the right doctors. We all know that we need WG specialist to help us navigate through this difficult climb. When you stated that the cytoxan is not working, maybe the same medicine Sangye is taking would be better. It is called Ritixbum(sp). Ask your Rheumatologist about it, it's a very promising drug and it really helps WG patients get into remission.
Barb when you went to the ER did they check for blood clots in the lungs? They do a special CT scan of your lungs to check for blood clots. Shortness of breath and pain when you breath is a symptom of blood clot in lungs. The pain medicine will mask these symptoms. Keep an eye on that. Don't want to scare you, because you might not have this, but just want you to keep an eye out.
Keep your chin up Barb, you will get there. Really, you will see the light. All of us on this forum will help and give you advice and support. Let us know how you are doing tomorrow.

[jola57]

Barb there are no easy answers, we each experience similar yet different symptoms. Same goes for getting better, for some it is relatively fast but for others it is slow. Bad news - rarely does anyone get back to where they were before wegs, good news - you will get to your" new normal" soon and hopefuly will be able to get back to work. I got sick in November, was misdiagnosed and given very low steroids for 3 months, and cyclo for 6 months, before I could go on the maintenance drug methotrexate, I started spitting blood, my rheumy wanted to make sure it was not an infection and waited for 3 months before giving me cyclo for 1 year. I am now on mtx for 4 months and 9mg pred. I had similar joint pain, hard breathing, but also peripheral neuropathy (can't feel my feet) hearing loss of up to 75% among others. I consider myself lucky, I went back to work that late January and have worked ever since. Even though I have my own company, I do not abuse time off too much and work just as hard. It has its ups and downs but most people understand and seem to accept me as I am now. I do not k now what you do but maybe work share or part time would be available or even work from home. I started to feel better by May (5 months from start of treatment), so you should be getting there.
Sending you this video to cheer you up. Doug this one is for you as well.
Sympatico.ca Video - Talking Cat Drinks Milk From A Spoon

[Sangye]

Barb, I can really sympathize with you. I've never been in remission since being dx'ed in mid 2006 (after a year of excruciating pain and weakness)-- not even close. I've never been able to work again at anything, much less my beloved profession. I finally climbed a flight of stairs last month-- after not being able to even go up 2 steps in 3.5 yrs.

The pain, weakness and a gazillion other symptoms and complications have been relentless for so long that I actually can't even picture being strong again. But even so, there's a tiny piece of my mind that believes it's possible and that it's coming soon.

I don't remember if you see a Wegs specialist. That may be the problem. You may need better treatment and someone who really understands the drugs. Meanwhile, let's not give up, okay?

I agree with Elephant that they need to rule out a blood clot in the lungs. You can call the facility that did your CT and ask if they did a "pulmonary angiogram" CT--that's the kind to look for clots. If not, please call your doctor asap and request one. Tell your doctor Weggies have a 23% higher risk of clots--famous research study.

Take good care.

[Cindy M]

Hi, I haven't been on for a long time, can't remember when the last time was. I have put my house up for sale in the fall and sold it in the middle of November. I have to be out by Jan 21st. I don't mean to come on this site just to complain but I wish at times my family could really understand what I am going through. I have been getting some help with the packing and everything, it's just the snide comments and looks I get that really have me upset. I am still suffering with a number of symptons from WG and they just don't seem to understand that if I push myself one day t he next day I am pretty much out of commission. I am still on 40 mgs of preds and 30 mgs of cyclo. I also did the retuxin IV in August, I am feeling better than I was during the summer but after pushing myself with the packing I am completely exhausted. I think when they see me feeling a little better they think everything is alright. I have been getting more bleeding in the nose, stuffiness, I am sore and stiff. I have been living in this house of about 16 plus years, my husband died 10 years ago when my daughters were 9 and 10, I took a secretarial course after my husbands death to get a decent job to raise my daughters so needless to say alot of things like their school papers, bills, you name it was just boxed and put away because I didn't have the time or desire to go through it. I felt it was more important to spend time with my daughters, taking them to there sporting events, movies etc. So now I have tons of garbage and goodwill items to get rid of and have been doing this. But it just seems like they expect me to have everything done as quickly as they can and I just can't work that way. Tonight my mom (who has been great throughout this) made some comments, I don't know if I am just more touchy and tired but I just wanted to hang up. My daughter's have not been much help either which doesn't help with the comments either. Feeling very stressed. Thanks for listening.

[jola57]

Cindy I hear you, my goodness 16 years is a lot of memories to sort thru. There is no way of getting our relatives to see how we realy feel. Whether it is their way of coping or just inability to see that we realy suffer but just don't show it, I don't know. I know too that telling them will not help. I also know that telling you to get your girls to help more in reality is impossible. Life is life and reality is that if we put on a show that is what everyone will see and draw conclusions. So slow down, throw out as many things as you can. Papers don't need to be stored if they are a few years old, clothes, momentos - keep only the most sentimental and only fitting ones. I go thru my closet three times in a month and find things to give away each time. Most of all rest, rest, rest in between.

[elephant]

Cindy, moving is stressful in itself. Then on top of being on prednisone and feeling worn out, wow it is normal to be feeling the way your feeling. You probably feel like you have to do this on your own and it becomes so overwhelming esp when you don't have anyone to really help/understand what your going through. Like, Jolanta said just take your time and rest in between. This is the perfect site to get your feelings out and vent and we are happy to listen. I do have a funny story to tell you about my moving day 5 years ago....
We were moving from Chicago to Greenville,SC and my husband had to start work before we moved. So I was left to do all the work, except we did have packers come in. I also had a newborn infant and a 4 year old and two big dogs. Anyways the packers were done packing and I went to stay with the in-laws who lived 1 mile away and then return back to feed the dogs in the morning (dogs stayed in the house). When I walked in the house it smelled like POOP! Walked in the family room and every square inch was filled with POOP and URInE. It was a complete Nightmare! Had to go to the neighbors and get paper towel and soap/water ect to clean the family room and then had to bath the dogs. What happened was before I left the dogs got into the charcoal grill and licked the white crap coal stuff. The packers dumped it and the dogs got into it and I didn't see that. So that is why they POOPED their brains out! those poor dogs. That just one of my stories about my move....I have more ...

[Barbara1966]

Thank you all for the words of the encouragement.
There is no blood clot in the lungs, I have checked this twice already. From December I do have a new team of doctors in Yale Hospital and we already discussed other options like Ritixbum. but first they wane to see if cytoxon will do the job.

[Doug]

Sending you this video to cheer you up. Doug this one is for you as well.
Sympatico.ca Video - Talking Cat Drinks Milk From A Spoon

What a hoot! Thanks, Jolanda! I showed it to Louie, who was mildly interested. I sent it to to my sister in Seattle, who will appreciate it, too. When I let Louie down, he walked over my keyboard, knocked my webcam off the monitor, and somehow managed to take the attached photo:

Attachment 212 Not bad for an amateur photographer! (double-left-click on the photo. The little, unfocused blob in the lower left of the photo, a sideway look at the back of my monitor and Dieffenbachias, is the photographer's tail tip!)

[pberggren1]

Oh Cindy! My heart goes out to you. I wish I was in Edmonton and I would come over and help you and visit - I think that would be good for both of us emotionally. I know what it is like to do stuff one day and the next be totally exhausted. I find it quite difficult just to keep up with my personal day to day hygiene sometimes let alone the house work. I have an Aunt in Edmonton and some cousins as well. If I get feeling better maybe I could come up there for a few days in the spring.

[elephant]

Barb so glad you hear that. Hoping the cytoxan will get you well soon. You will get there. I say that to myself too.