From the Mouth's of Babes

[BrianR]

I hit the pavement at 45 km/hr on my road bike this summer that sent me to the hospital but I didn't shed a tear!

Today my 5 year old daughter wrote a card for her Mom that said..."if you die my heart will be on fire". Damn if that didn't get me there.

Even 5 year olds get it.

We need a cure for all of us (that includes those of us who do not have WG but share the pain in our own way).

Stay strong.

[maria garcia]

Brian, I feel your pain my daughter is the patient here and I want to be strong for her but I feel like my soul is being riped slowly.

[Al]

Even 5 year olds get it.


Brian--I have to ad that she is one cute kid, as well as a very smart one and a major contributor to family lore. (Our own kids haven't coughed up, so to speak, in the grandchild department, so we have to borrow some temps now and then.) Another thing: I appreciated your stance as a spouse. Often, the other party is seen as someone who "just doesn't get it". But this can't be right. Indeed, I cannot conceive of going through this process without a partner. My hat is off to my wife, and to you as well. But, yes, therapy is necessary for us all. My late mother in law used to say, "life is pretty good so long as you don't weaken. Yet we all weaken, and then life seems not so good. The web of family helps, of course. So does a great example. You know, I think that the little one who said, "if you die my heart will be on fire" will have that heart on fire, in the best sense, for the rest of her life, just because of who her parents are.

Al

[Geoff]

Thanks Brian for sharing that with us. Whilst the subject is tears and pain, I believe that Wegs can have a positive aspect as it 'points up' the love that we can experience , especially within the family.

It sharpens the senses to appreciate the 'good times', and they will be relative and subjective.

P.S Take it easy on the bike my friend, stop staring at all that beautiful countryside and keep your eyes on the road!

[Dirty Don]

WE all should be kids again, purposefully or not...sighs...

[Hammy8241]

P.S Take it easy on the bike my friend, stop staring at all THOSE beautiful WOMAN and keep your eyes on the road! Put this right for you Geoff!

[pberggren1]

Oh Brian, I hope Marta is okay. Hana is such an angel.

I know you care so much for your family. It really shows in your words and actions. But I know that even you have much pain to go through. It is very hard to see Marta go through all that suffering. I really do think the caregivers have it just as bad or worse than the patient. Right now I see my parents stressed to the max.

[Dryhill]

Brian thanks for your comment. I realised how much my family were concerned about me, but completely failed to pick up on how bothered my next door neighbour was. It was when having coffee with her that her concerns and worries about me doing to much came out. There is no way that I could have got to my current situation without the support of family, friends and neighbours.

[BrianR]

Thanks everyone.

Marta is doing quite well but she, like you, has ups and downs and is now looking at another round of RTX to keep the beast at bay. I am sure she will post an update when she returns from Edmonton tomorrow or the next day. I am OK too but have my moments when something happens like what Hana said yesterday.It is really quite incredible (and marvelous) how aware kids are.

I do not post much but follow a lot so I know what's going on with most everyone!

Hope for better days ahead for all of you!!!

[Lightwarrior]

Hanna is so amazing as are you and Marta, Brian. I'm glad that Marta is doing well, she means so much to us.

[Lightwarrior]

Of course women don't work as hard as men. That's because they do it right the first time. (Did I really say that:w00t:)

OMG HAMMY, I can't believe you finally see the light :laugh:

[marta]

Hello my beautiful friends. I'm doing fine. I just came to the city to see my doc about another round of RTX as I'm feeling the beast awaken slowly... I just want to make sure I don't have to go back to square one, and avoid at any cost going up on the wicked pred again. I'm at 8mg. I haven't been posting as with improved strength come increased responsibilities and activity. I am far too busy. Actually that's my biggest complaint these days - not enough hours in the day to get everything done.

Hana and I spend a ton of time together and since she's having a one day away from momma withdrawl, she's being super awesome and writing cards that make my heart melt. When we're together she yells at me and even gives me the occasional kick in the shin, so it's good to go away for a day to see the angel inside come out and show herself. She's an absolutely amazing kid and I feel so trully blessed to have her and Brian and my family loving me and backing me up in my corner when the 'fight is on'. Truly truly lucky I am. (Yoda)

I also peek in here sometimes but not nearly as much as I would like. You are on my mind a lot though, nothing can stop that.

Some cool stuff to report. Dr. Yacyshyn, Dr. Pagnoux, and yours truly (ha ha ha ha) just got an abstract published in a rheumatology journal at the latest Rheumatology Conference in Chicago (sorry I forgot to ask Dr. Y. all of the details) with the results of the survey that all of US have filled out. The basis of the abstract was that patient generated surveys are as viable as those designed by the medical profession as our results are very similar to what they have from their studies, and our response is much higher than anything out there. So yeah people, we've been published!!!!!

Something else that's cool. Dr. Y is starting a vasculitis clinic in Edmonton starting January. The hospital wants something novel and great aside from just the clinic. She wanted it to be a multi-disciplinary clinic focusing on vasculitis, however she's unsure if she can get all the specialists to have the same time to allocate to the clinic. She opened it up to me to see if I have any ideas and to think about it. If any of you have any briliant ideas, pass them on. This is so cool. It will be the first and only one in Western Canada. I have some ideas, but please please if there is something you have in mind bring it on... this is yet another opportunity where we can have a say in something new and special. I love my doc.

But I love my Brian and my Hana more than anything on this planet, nay, in this universe.

There, aren't you glad I don't post much anymore.... it's always a novel.

[Dryhill]

There, aren't you glad I don't post much anymore.... it's always a novel.

But such an enjoyable and uplifting novel. :thumbup:

[jola57]

Marta, I hope you can keep the beast away, so that Hana can kick you shins all she wants :) My foremost thought is that Edmonton clinic liase with Mayo, Rochester, and others and bring their expertise to Canada. And not just in experiments and such but to begin treating patients from all of Western Canada. I find that my, and a lot of other doctors, just do not consult with US vasculitis/Wegs experts. With an understanding that treatment is the same all over, the different symptoms we all have should be categorised, published and shared between the clinics. I for one would welcome to be able to call up/visit Edmonton clinic and request that they get in contact with my rheumy and get regular updates about my treatment. I would also like them to feel free in letting my rheumy know if he is not doing something that he should or that would be benneficial to my treatment.