New member

[LisaMac]

Hello everyone! I'm struggling to figure out how this forum works so I'm going to try this avenue and see if I reach you. Seriously, you'd think I was 105 years old with this technology but alas, I am only 50.

My journey with Wegener's began in the summer of 2006 while volunteering at a medical mission in Haiti. I was such textbook Wegener's, as far as symptoms, and yet I fought sinus and ear infections for a year after my return to the states. I lost my hearing and all sense of smell and taste. I had very bad 'asthma', couldn't eat and struggled to get to the bathroom. I just kept getting sicker and sicker, but none of the dozen drs I saw could put the pieces together. In June, after an entire year of being sick, my ENT had to perform an emergency mastoidectomy, followed by the other ear a month later. I was honestly mostly dead. I hadn't been out of bed, except for my husband bathing me and taking me to another dr, for months. You'd think I lived in the middle of nowhere, but I was in Los Angeles! Finally, on Saturday, August 11th, 2007 I awoke with chest pains. By the end of the day I was in ICU, on a ventilator , dialysis, and undergoing a platelet pheresis. My platelet count was over 2 million. Two...million! The dr told my husband to go home and prepare our kids because it would take a miracle for me to live through the weekend. Our kids were 16, 12, 10, and 6.

Well, we got our miracle 'cause I'm still here to tell my story. I've had a couple of big relapses and just getting into another so finding this group is timely for me. Like most of you I've tried the whole range of meds, but Rituxan seems to work best for me. My dr is VERY hesitant to give me more Prednisone because 4 years ago I developed AVN, or avascular necrosis, in my hips and I've had both hips replaced. Ummm, yuck.

I am so excited to walk this path with you all beside me. I've already had a warm welcome from one member that brought tears to my eyes as I've walked alone, and afraid, for so long. I hope I can offer hope and encouragement along the way, as well. I am not nearly as educated in all things 'Wegener's' as many of you but look forward to tapping into your wealth of knowledge. So, is there a limit to how many words I can use to introduce myself? I hope not because I have surely exceeded them!

It's nice to meet you all, my fellow Weggies. (haha, I've never used that term before)

[Debbie C]

Hi Lisa,glad you found our "sick little family" but it seems to be growing everyday,unfortunately. You sure have been on a journey...I can't imagine a platelet count so high.Glad you are here to tell us about it and now you don't have to be alone or afraid anymore. This forum is open 24-7 since there are people from all over the world on here at some point. So anytime you need someone to talk too...we are here.Its sounds like you have a good dr. now and things are pretty much under control. What other meds are you taking. I am in remisson right now..I go (like everyone else ) month to month with the blood and urine tests to see.I have to go next week so will see then. But I can't tolerate any drugs so the only thing I am on now is 5 mg of pred.

[mishb]

Hi Lisamac and welcome to the best forum around.

I'm sorry that you had reason to find it, but just know that you are no longer alone.

There is no limit to the amount of words you can say, and in your writings I can feel that you have an easy going nature.


You have certainly been through the wringer and I'm glad you made it through to tell your story

Very glad to meet you to, fellow Weggie :hug1:

[LisaMac]

Thanks guys! The only meds I take right now are Klonapin for involuntary twitches and PRN pain meds. I've been flying solo except for Rituxan ever year to year and a half. Iam monitored constantly and seem to be holding my own. I've had 17 grams of Cytoxin and hope to never go down that road again. I eat super healthy foods, or as my daughter says as she unloads the groceries, 'damn hippie food!' I do yoga when my joints allow and try to stay happy and stress free. Fortunately I live only a couple of miles from the beach and have frequent Pacific therapy sessions.

Thanks for the hug!

[Debbie C]

Gosh Lisa,you sound like me..I have changed my eating habits and have a fruit or veggie smoothie everyday and my family thinks I am nuts. I also do yoga and just got a dvd on Tai Chi that I am going to start plus I just started going to the gym a few times a week. But the ocean is my passion,unfortunately in Ohio there is none. So I make yearly trips to Fl. (which I am looking into going for the month of May ) and maybe checking out a sublet or something because these Ohio winters are killing me.Oh I am also on Klonopin but that is for anxiety. You would think the drs would have you on something else besides rtx,that is usally just used as a hard hitter or some take it for maintence.

[annekat]

Good to hear your story, Lisa, though I'm sorry you have gone through such a rough time with it. I also had a delayed diagnosis, with a couple years of sinus and ear infections, and that is not uncommon. You have had WG longer than a lot of us, though not as long as some... it's hard to imagine the loneliness you must have felt before discovering this forum. And most have us haven't reached a point of being told we weren't expected to live; thank goodness you did, and that you have a supportive husband and family to live for. If we seem knowledgeable on here, it is because of the forum's existence and what we have learned from each other. There is a definite limit to what most of us learn from doctors or other internet sites. I'm sure we have some things to learn from you, too. And some of us belong to some Facebook groups or are just Facebook friends and share lots of stuff that's not Wegs related. So if you are on Facebook, let us know, and we will include you in our circle there. I'm glad you joined us here!

[LisaMac]

Thank you. Debra I am allergic to Bactrim-type drugs and Methotrexate. Imuran and Cellcept didn't help me at all. Because of years on Prednisone I developed avascular necrosis and had to have both of my hips replaced.

After my original heart attack, kidney failure, life...failure, I started this body 'twitch'. Even after brain scans they can't figure out why my body does it. My Dr started me on just .5 of Klonopin every am and pm and the twitching stopped. Maybe that's why I don't suffer from depression or anxiety. ~bonus~ I like a good twofer!

As long as I stay stable, and he checks me often, my dr let's me go with just that. Sometimes, I think, less is more, as long as my body is stable. I believe stress and environmental issues play a big role in my well being. I try to maintain an even flow through life, that seems to help

[LisaMac]

I'd love to join a fb group, btw.

[Pete]

Hi Lisa,

Welcome aboard. Sounds like you've finally gotten to a spot of understanding. Hope the flare dies down quickly.

My wife and I are also beginning to eat "like hippies". We've both lost weight. We both feel better. We also get some good exercise at the local YMCA each week. I feel as well as I did before Wegs hit -- I'm very fortunate.

Beach therapy is a good thing. Glad you can get plenty of it. Our next "treatment" is set for June. Can't wait!!

Take care and keep us posted!

[LisaMac]

Thanks Pete, enjoy your beach therapy!

[kaysee]

Welcome to the forum Lisamac.
Wow. You have been through a lot. I am so glad you recovered. I have never been near death with this dumb disease but it has done a job on my kidneys.
Hope you enjoy the forum.

[annekat]

I'd love to join a fb group, btw. OK, I'll PM you with my Facebook user account info and you can put in a friend request... from there, I can hook you up with others from the forum who are on FB and also with some of the groups for people with vasculitis. There is even a creative arts group for us. And there may be one for vascies or Weggies in your area, as there is one for me here in my state.

[Jayne 14]

Welcome Lisa
You've certainly gone thro a lot : glad you made it all the way here , this site is such a friend to us all
Help & advice from people who understand what we go thro
I've luckily not been anywhere near death , good luck & welcome again


Sent from my iPad using Tapatalk

[LisaMac]

Thank you, Jayne!

[LisaMac]

I agree wholeheartedly with you guys that one huge irritant is when people say, "you don't even look sick." "Smoke and mirrors" is what I always say. Of course on my bad days I don't leave the house so they don't see me. I guess that's actually a blessing, I don't really want to 'look' sick.

[whatthewhat]

Welcome, Lisa! I am glad you found the forum. Besides the company of all these fine folk, geoup wisdom is invaluable to me on a rare disease like this. We live in Orange County - were just having Pacific therapy this afternoon! :-)

[LisaMac]

Whatthewhat! Excellent, I live in HB! Invaluable therapy, right? I grew up in Garden Grove. We'll have to exchange Dr info sometime.

[whatthewhat]

O cool! Yes, would love to hear more of your story. I'm up for coffee anytime. Mostly.

[LisaMac]

Whatthewhat, I sent you a pm

[spiritscript]

Wow! You have been through so much! :( I'm new here too. :)



Hello everyone! I'm struggling to figure out how this forum works so I'm going to try this avenue and see if I reach you. Seriously, you'd think I was 105 years old with this technology but alas, I am only 50.

My journey with Wegener's began in the summer of 2006 while volunteering at a medical mission in Haiti. I was such textbook Wegener's, as far as symptoms, and yet I fought sinus and ear infections for a year after my return to the states. I lost my hearing and all sense of smell and taste. I had very bad 'asthma', couldn't eat and struggled to get to the bathroom. I just kept getting sicker and sicker, but none of the dozen drs I saw could put the pieces together. In June, after an entire year of being sick, my ENT had to perform an emergency mastoidectomy, followed by the other ear a month later. I was honestly mostly dead. I hadn't been out of bed, except for my husband bathing me and taking me to another dr, for months. You'd think I lived in the middle of nowhere, but I was in Los Angeles! Finally, on Saturday, August 11th, 2007 I awoke with chest pains. By the end of the day I was in ICU, on a ventilator , dialysis, and undergoing a platelet pheresis. My platelet count was over 2 million. Two...million! The dr told my husband to go home and prepare our kids because it would take a miracle for me to live through the weekend. Our kids were 16, 12, 10, and 6.

Well, we got our miracle 'cause I'm still here to tell my story. I've had a couple of big relapses and just getting into another so finding this group is timely for me. Like most of you I've tried the whole range of meds, but Rituxan seems to work best for me. My dr is VERY hesitant to give me more Prednisone because 4 years ago I developed AVN, or avascular necrosis, in my hips and I've had both hips replaced. Ummm, yuck.

I am so excited to walk this path with you all beside me. I've already had a warm welcome from one member that brought tears to my eyes as I've walked alone, and afraid, for so long. I hope I can offer hope and encouragement along the way, as well. I am not nearly as educated in all things 'Wegener's' as many of you but look forward to tapping into your wealth of knowledge. So, is there a limit to how many words I can use to introduce myself? I hope not because I have surely exceeded them!

It's nice to meet you all, my fellow Weggies. (haha, I've never used that term before)

[LisaMac]

And yet...I smile...a lot. Life is worth the fight so fight on. Look for something positive in every day. Take a few minutes every day to feel the sun on your face, run your toes through a patch of earth, whether it be grass, dirt, or sand. Really feel and enjoy the good moments. Google 'foods that cause inflammation' and avoid them like the plague. Laugh, and love with everything you've got, but mostly laugh.

Never look back. We've been dealt a bad hand, but bluff and live like this is your last day on this beautiful planet and you still have a lot to accomplish. Enjoy every day to it's fullest. Smile at strangers like you've known them your whole life.

Yes, this disease sucks, it hurts, it's ugly, it makes you feel exhausted and sometimes miserable, but don't let it take your internal happiness from you. Look around, someone who is worse off than us is usually close by.

Now, down from my soapbox. Thank you for your time.

[lag713]

Welcome Lisa! I hope that you're able to find the support and answers you're looking for in this forum. Soapbox speeches are always welcome too. :wink1:

[LisaMac]

When I go on a rant like that, I'm usually preaching to MYSELF! Lol

[annekat]

When I go on a rant like that, I'm usually preaching to MYSELF! Lol I've seen much longer rants than that on here! They are always welcome, and this is the place to unload them. However, that one was not strictly a rant, since there was a lot of positive energy in the message! :smile1: