Words that helped!

[drz]

There are some phrases that helped me deal with Wegener's disease that have stuck with me.

When I was first diagnosed and treated my outcome and survival were very uncertain. One doctor kept telling me on his daily visits, "If you aren't getting worse, you are getting better." This helped me deal with the uncertainty of whether I was getting better or worse. I believe it was medically correct because deterioration in my condition was easy to detect, but no change felt uncertain till he told me this. It also had to do with recovery is generally much slower than decline.

Several months later I was talking to a work colleague who had been diagnosed with Wegener's four years earlier. He told me when he was diagnosed his doctor told him, "If you can survive the treatment, it will get better." I had him repeat this several times to be sure I heard it right. He told me the first year or two were especially rough but things had got better for him.

I have survive the treatment so far, and things are better and I hope they will continue to get even better.

Of course one of the most significant and helpful things were the many words of concern, wishes to get well, and encouragement from family and friends.



What words have you found most helpful in dealing with Wegener's disease?

[NicShaf]

drz, I really like what your doctor told you about getting better, that is something I will keep in mind going forward, thank you for sharing.

I haven't had any specific words that have stuck with me, but general encouragement from my friends and family...and this site...has helped a lot so far, I hope that everyone going through this has some support like that.

[JanW]

I find it helpful that my rheumy and ENT both call me 'a healthy person' whenever I have a complaint/issue, e.g. my rheumy saying, "I want to check out your thyroid because I wouldn't expect a healthy person like you to have this blood pressure reading" or my ENT saying, "a healthy person like you will have no problem dealing with this surgery. I think this serves two purposes -- it reminds me that WG is just a part of me, and I shouldn't chalk up other potential medical issues to "well, of course I have this, I have WG" and 2. it makes them take anything that is ever wrong very seriously, because all in all, despite this disease, I am actually a healthy person.

[gurinbasra]

When I was so very sick that I felt like I was really going to die, my daughter (then 13 yrs old) said, "Mum, it has to get worse before it gets better" - something I would always tell my kids when they were sick! It was hearing those words of hope from my child that gave me great comfort during those rock bottom days.

A few words that I always live by now are:
Nothing stays to the same forever
Take control of what you can and that's your mind - change the way you think and you can change your life!

[Brooke]

I was crying in the doctors office at Mayo when my doctor told me it was 99% Wegener's. I had no idea what Wegener's was, my ENT at home always suspected that, but I never even researched it since everything had always come back negative. Anyways, she told me, "Why are you crying?" "This is treatable!" I guess that makes me feel better!

[Sangye]

At my first visit with Dr Seo he said "You will be better than this. This isn't as good as it gets." It lifted my chin off the ground, where it had been dragging for 2.5 years.

When I saw him last month, I asked if he thought I had any chance of working as a chiropractor again. He said, "Not only do I think it's possible, but I look forward to that day." Dr Seo is this clinical kind of guy and I forget that he isn't just trying to get me well on paper, he's looking at me as a real person and sharing my dreams.

Like Gurinder, I remind myself that nothing lasts. If I'm doing well, I'm grateful for that because that won't last (not being negative, it's the truth about life). If I'm doing poorly, that won't last either. One of the blessings with the Wegs dog is that he changes his mind quickly. I might be in terrible pain one minute and literally the next the pain is gone. Fickle doggie.

[Sangye]

At my first visit with Dr Seo after I listed all my symptoms he said "I believe you." Like many of us, I'd had a lot of doctors say or imply that things were all in my head. I was stunned and speechless when he said that.

[freakyschizogirl]

I actually got teary reading your posts above. Have to agree with Sangye having someone believe is the best sort of medicine. The doctors made me feel like i was overeacting for 3 years. And that i really didnt have any point in coming back.

The worst thing i ever got told was "Wegs is like cancer, but not" - just after diagnosis at 25 years old cancer is a very scary word! And its not entirely an accurate account of what Wegs is.
The phrase i hear repeatedly is "its treatable"

The most inspirational thing came from my chest consultant after i told him about my journey to diagnosis, he said "No one cares more about your health than you. Take you life in your own hands." He also told me to keep records for everything, which is why i am in a battle with the Rheumy's sec right now for some letters!

[stikker]

I agree that no one cares about your health more than you. You have to fight for your care. It would be very easy to fall through the cracks. You have to demand an appointment when you need it. If they don't call you back you have to be persistant. It feels like a battle and it's when you don't feel good to begin with. I was having a problem with a referral ( you can't get an appointment with DR Merkel without a referal- can't get a referal withoiut an appointmant). This went on for weeks. No one would help me. On the day I had my temperal artery biopsies I finaly broke down and cried. That was the only way I got help. I filed that away in my memory bank and I'll use that one again if I have to. I don't know how "OLD" people get throught the system. (I say OLD because I'm 50, but I'm not old yet, I just feel it sometimes)
I work at the hospital that I have my monthly lab work done. I review my own work before it is even sent on to Dr Merkel. If I don't like something I email hiim immediatly. I probably drive them crazy but in a way it makes it easier on them. They can say" we need to get you liver checked" and I can go in to the computer instantly and say I had that done 3 weeks ago and I'll fax it right over.
They also know I like to see all the numbers. I don't just want to here it was normal. High normal or low normal. I need to know! They email me all my results as soon as they have them.
They also cc me on any corespondence with my other doctors. I have a huge pile of papers but it somehow makes me feel that I have some kind of control/involvment in my care. Even if it's just an illusion, I'll take it.
It's your life and you have to fight for it! No one cares more than you!!!

[Sangye]

I'm the same way about my records but at JHU you have to pay to get them and it takes weeks. I can get around it a bit by asking different docs for a copy of a CT scan or latest labs, etc but it's not nearly everything. I especially want the labs because I change supplement doses based on them. It doesn't help me if Dr Seo says my vitamin D is low. I need the exact number to know how much to take.

In general I'm not as concerned with getting every record like I used to be, because the JH docs are so thorough that I don't need to check on them.