A story much like yours....

[Davey_From_NC]

Dave here. How ya doin'? Husband and Father of two boys, 14 and 12.

April of 2011 - Had a birthday party for my oldest son, who was turning 13. We played AirSoft in the woods behind our home. The next morning, as usual, I was feeling stiff after running / jumping through the woods in heavy ballistic gear.

The soreness didn't go away, it got worse... then I had an epic, 13 hour long nose bleed. It was awesome.

Soon, I couldn't lift a drinking cup to my mouth without being in significant pain...

Went to see the Doctor - in the woods, eh? Well, it's Lyme Disease, maybe Rocky Mountain Spotted Fever, etc.

All those tests came back negative.

4 months go by, I'm still in severe pain, Doctors have no clue. I was now almost blind in my left eye, both eyes were VERY red, so I have an intra-ocular specialist, a rheumatologist, and my family physician.

I got bumps on my arms that looked weird. I started seeing an ENT doctor too - my sinuses were crazy.

ENT had a conclusion - Vasculitis.
Dermatologist did a biopsy - Vasculitis.
Intra-Ocular guru took some photos / scans - Vasculitis.

Rheumatologist diagnosed me with WG. After he found this out, he took me immediately to the Infusion Lab and I got 500MG of steroids. Yay.

Since then, I've lived the life of Prednisone, Cytoxan, Bactrim and Pain Meds.

The weight gain has been awful. Over 60lbs. I'm just now bouncing back.

A month ago, they observed that I had no potassium or hemoglobin in my blood. They were trying to call me but I was busy with my Boy Scouts hiking up a mountain - in which I had extreme difficulty, and couldn't understand why... well, I found out when I answered the phone a few days later!

I went off the chemo for a couple of weeks, and started a potassium suppliment. When I stopped the Cytoxan, it immediately flared up and caused inflammation in my brain, which has now made me cross-eyed as the day progresses. There's no consistency, so they can't solve it with prism lenses.

I draw pictures for a living. This is not cool.

Back on cytoxan, ramping down the Prednisone, weight is starting to come off. Working out at the gym 5 days a week and eating a healthy diet.

Funny part is, this disease is the best thing that has ever happened to me. I feel like I won the lottery. Since you've endured this mile-long post, I'll share that with you soon.

Have a good one,
Davey

[Al]

Not, unfortunately, an untypical story, Davey. These things are difficult to diagnose, and it often takes a long time and a lot of mis-direction to get there. I'm glad you are taking care of yourself the best you can, considering. But remember that it isn't just about doing "everything right"; there is a lot of complicated stuff going on. As you are in North Carolina, I hope you are availing yourself to the expertise at Chapel Hill, which has a fine vasculitis center.

Yes, please let us know the rest of your story!

Al

[Dirty Don]

Welcome Davey...a story much like all of ours...sheesh, one we would rather not have to tell...but it's good you're on here to tell it, could have been worse! Sounds as if you're doing the things that help...as Al says, make sure you get a WG specialist to at least advise and communicate with your present docs. I get the weight gain as I'm 6' 1" and have zoomed up to 250 over the last year on pred...and I'm very active...just won't go away...but I'm weaning off it now, so hopes are good. As yours should be...best of luck...keep us informed, there are many on here who are well versed medically speaking & just a lot of stories of WG from which you can glean your own useful info. Remember, WE are on the inside of this insidious little disease and the docs are on the outside...keep them informed, ask millyuns of questions, and keep up the good fight!!!

[Pete]

Welcome to our world, Davey. Wish you didn't have to be here, but since you have our odd disease, I hope you'll find this site to be a useful resource. I wholeheartedly support Al and Don's advice to find and work with a wegs specialist. I just did (at Cleveland Clinic) and she's been very helpful. Keep on enjoying your life and focus on what you can do instead of what the disease may take away occasionally. Hope to hear from you as you deal with our sneaky friend.

Pete
dx 1/11

[Jaha]

Welcome to our greatest source of information group. Sounds like you are doing pretty good mentally,with excepting the dx you've been given. I'm so glad that you are able to stay active, espically with having two boys at that age. Remember to always ask to drs. questions on something that isn't clear to you. Best of luck!

Jana

[Psyborg]

Welcome Davey

[elephant]

Welcome Davey, I live in SC! I make a yearly trip to Cleveland CLinic and see a wegeners specialist. Keep us posted.

[Sangye]

Welcome to the group, Davey. I like how you wrote your story. I'm really hoping you are seeing a Wegs specialist (ie, not just a rheumatologist). CNS involvement is very difficult to treat. It's great that you can be so active though.

[KathyB]

I make a yearly trip to Cleveland CLinic and see a wegeners specialist.

What's the name of your specialist at the CC?

KB:cool:

[KathyB]

As you are in North Carolina, I hope you are availing yourself to the expertise at Chapel Hill, which has a fine vasculitis center.

Hi Al -- Do you have the name of particular WG specialist at UNC?

KB:cool:

[Davey_From_NC]

First of all, thanks so much for the warm welcome! I'm having a hard time typing / seeing right now due to vision problems, but I'll be back when it clears up...

Second of all, looks like I need to find a specialist! It's just me and the good 'ol rheumatologist. He's a great guy, but right now communication has grown stagnant and my vision is getting VERY bad (I draw pictures for a living, so that's NOT COOL)

Still, this sneaky little ailment has brought on so many good things that it far outweighs the negative. Well I can't see so gotta go lay down, hope to be able to post again soon.

Blessings,
Davey

[pberggren1]

There are some good Wegs specialists in NC. Falk and Dooley are at UNC in Chapel Hill and Allen is at Duke.

[Lightwarrior]

First of all, thanks so much for the warm welcome! I'm having a hard time typing / seeing right now due to vision problems, but I'll be back when it clears up...

Second of all, looks like I need to find a specialist! It's just me and the good 'ol rheumatologist. He's a great guy, but right now communication has grown stagnant and my vision is getting VERY bad (I draw pictures for a living, so that's NOT COOL)

Still, this sneaky little ailment has brought on so many good things that it far outweighs the negative. Well I can't see so gotta go lay down, hope to be able to post again soon.

Blessings,
Davey

Blessings to you also Davey. I am happy that you found this group. I know when I found out that I had Wegener's I was relieved to know that I wasn't crazy and that there was really something wrong with me. You elude to the good things far outweighing the bad. Please share :thumbup:

[Davey_From_NC]

Wow! It's been a long time, but my partial blindness and double vision wouldn't let up!
I had a chest X-Ray yesterday, and some more blood work / urinalysis. If I get an all clear, I'm tapering off the Cytoxan and Prednisone. It's been 15 months. I'm doing really well, and able to get back to some activities (camping, hiking, etc.) - I hit the gym every day (almost).

This illness has been such a challenge, yet I am so fortunate compared to most. There are often times I feel like this was an answer to many prayers. You know, God never does answer those the way I expect... ever.

I was praying for a closer relationship with Him - through this struggle, that DEFINITELY happened.
I was praying to get my schedule opened up so I can do more ministry work. Let's just say that Wegener's caused be to back out of a few things I was participating in...
I was praying for my father, that he might one day know God. His first prayer ever was to heal me and to make me new again. He was at his wit's end. He is now going to church!
I was praying for boldness in sharing my faith - Having an uncertain future here encourages that, if anything. I am definitely more bold now in letting others know about Jesus.
I was praying for a way to be inspirational to my sphere of influence - God gave me a testimony. It's up to me to use it.
I was praying for patience - Wegener's teaches you to WAIT. I know you know what I'm talking about. Diagnosis. Tests. Appointments. Treatment. Recovery.

Those were things I THOUGHT or KNEW I needed.... there are many more. Here are some things I DIDN'T realize that I needed -

I needed to be humbled. I watched helplessly as my church family maintained my house and did my chores. They brought meals. The raised funds.
I needed to stop being so vain. Prednisone inflated me like a balloon. I lost my vanity and was more aware of other's feelings.
I needed to learn how to receive. I was the guy to mow your lawn, fix your house, be the hero. I was the one that gave money. I learned how awesome it can be to receive. Breathtaking.
I needed to pray more for others, not just my own needs. Receiving prayers from hundreds of others left me wanting to pray for others in return.
I needed to learn that "you can't out-give God". Every time I thought I was "even" (yes, I was mistakenly keeping count), God would show up and do something HUGE.
I needed to be less judgmental. The blind spot in my left eye looks like the end of a board, or plank. Read Matthew 7. That hit me like a cold chill when I read it. I cried.
I needed to realize that I was not "all that" and that I needed God. I rarely asked for God's help or guidance. I now do this every day.
I needed to be more compassionate toward other's ailments. I never understood arthritis. I thought it was a lame excuse. No, it's VERY real.
Those around me needed a way to glorify God through selfless acts of love and kindness. Those opportunities are rarely available through "good times". It brought EVERYONE closer together.


Thanks, God, for the miracle of Wegener's. I know I cussed at you at first. Please forgive me. You've taught me that my body is only temporary, and fragile. Eternal hope lies in you, Lord, and I need to
remember that. You've shown me so much through just this one thing. You gave me scripture at the perfect times, you had a friend call at the perfect moment. You taught me that your church is not a building,
but a working body made up of many people, all striving to glorify you.

Indeed, you shall be glorified. Through my suffering, I have grown close to you, and others have as well, as a result. You do, Lord, know exactly what you're doing.

Sometimes this seems cruel and unfair. It seems that you've forsaken me and have turned your back on me. I am holding on too much to what is temporary, and have lost focus on what is eternal.... for if I REALLY believe that what I believe is REALLY REAL, I will long to be in your presence, and tell all others that they, too can witness your glory. Meanwhile, however, I will love all others with all of my heart, and show them, through my life here, that love conquers all.

I lift up each and every person here in this prayer. Heal and renew their spirit. If it is your will, provide a miraculous sign and heal their bodies. Give their doctors wisdom. May their names go down as saints, as strong warriors whose stories inspire others in more ways than one can imagine. If they are called to you, may their legacy be the fuel of inspiration for others, to never give up hope, to always keep their eye on the prize. Amen.

[chrisTIn@]

Hello Davey. This is the first time I see this thread. Your introduction is very well written, I enjoyed the way you described what happened to you.
We all know that having to learn to live with this disease is kind of a 'spiritual' experience indeed. In some ways you have to learn to live again, so to speak...
Dealing with the ins-and-outs of Wegener's/GPA sure makes you humble!

I'm sorry if I misunderstood anything, but how is the sight in your eyes now?
Are you able to make drawings again? I sure hope so!
Wishing you all the best.

[HopeinTN]

Thanks for your post. I feel the same way and was thinking the same thoughts. Glad you put it in writing. I'm also encouraged that you survived Cytoxan for so long. I'm currently in month 14, and very eager to kick this habit.

Take care and please let us know how your labs turn out.