Happy to be here

[alicia_b]

I'm so thrilled to have found this group!
Let's see where do i start... Back in the summer of 2011, I had a horrible case of sclaritis ( sorry i'm not a great speller). After going to 3 different doctors, it was Finally improving. The last Dr i went to did a blood panel, which came back negative for autoimmune diseases, like lupus. Then a month later, my ears and nose were infected. They stayed that way for a few months, untill pneumonia was added on top of everything else. Then the unfortunate happened. I couldn't walk and could barely breathe while trying to care for two toddlers while my husband was at work. I ended up in icu for about two weeks at the first hospital. I remember waking up one morning to a lab worker and nurse scared crying bc all of my fingers and toes were black on the ends. That night my mother in law (who is an ent) got to transport me by ambulace to one of the best hospitals in the state. I was there not even 10 minutes before the dr came in & immediately knew i had wegeners. That began my 1 1/2 months of this new hospital journey. I am so thankful for this hospital staff. They were a able to begin the healing of my bleeding lungs, kidney failure, saving my fingers and toes, along with all the other organ problems.
I am thankfully beginning to show signs of remission.
Everyday i am thankful for what i have. Getting this disease hasn't been completely horrible. It has made me mentally stronger, more compassionate, & more loving. I will admit it has been hard, especially when family members have told me i wouldn't be sick if i had a job, while in the hospital on a feed tube in icu. Life is much more than this disease. I try every day to not let it define who i am.

[Swb21188]

Hi Alicia

I bet you love your mother inlaw, Ha Ha. It is so good you got a diagnosis and treatment in time and will be able to get to a new form of a normal life. Don't worry about you other family members, my mother told me I was sick and going to die in three months because I wasn't a Christian and God was allowing this to happen. If I became a Christian I would be healed. :sneaky:

[alicia_b]

Ambulance rides are the worst. We can at least have some hilarious memories from my first ambulance ride, lol.
I absolutely can't stand these comments family, or any other person, make. I usually have to walk away from them, when i can, if not I'll ask them if they want to trade their good health for mine. Lol, it gets them to change subjects quickly.

[Swb21188]

I hate ambulance rides. You will have to tell me yours. I don't tell my "family anything" because really is all my own fault if only I would realise the error of my ways and get born again. And yes, maybe if you had a job you would be perfectly healthy because that's obviously the cause of all that is wrong in the world. Dam they should tell the medical field, think of all the people who could be cured.:flapper: Because it's not like the rest of us had/ have jobs and what do they think raising children is.

[mishb]

Hi Alicia and welcome.

You have to love the Aussie sense of humour. Swb21188, you are completely right :razz:

Alicia, what you have been through sounds just awful but I know what you mean about finding more strength and compassion. I feel the same - most days.

I don't even know what the hoosier state is, but I am so glad they have the best hospital and your mother in law was able to get you there.

Take care

[renidrag]

Michelle, I believe Indiana is the "Hoosier State" in USA. Can't beat Indiana basketball.
Dale

[annekat]

Welcome, Alicia! Your WG came on quicker and more dramatically than some, including mine, which was hard on you, but at least you got dx'ed within a reasonable amount of time, it sounds like, compared to some. I'm sorry your case was bad enough you had to spend all that time in the hospital. The black fingers and toes sound horribly frightening, and I'm glad those were saved. It is good you have an ENT in the family! She will have some understanding of how WG can affect the nasal and sinus area as well as the ears and throat. I hope you will continue in your progress toward remission without much permanent damage in those areas. I have the same involvements as you except for the kidneys and eyes. There is extensive permanent damage in my whole sinus/nose/ear area, but the tissues have healed and I have no pain or extreme symptoms except for permanent hearing loss and a little double vision from the sinus bone erosion around my eye sockets. These things don't happen to everyone, especially when it is caught early. My lung involvement may have been lighter than yours; it was cleared up early in treatment and my breathing is fairly normal, though sometimes sounds worse than it is.

In any case, you have come to the right place, as the need for info, support and friendship from others with WG is ongoing! I hope you'll be on here often and join in the discussions.

[Dkathleen]

It is good they caught it fairly early. I like your positive outlook!

[Thinker]

Welcome to our group! You will find lots of compassion, and both practical and medical advice. That's wonderful you are showing signs of remission. Most people feel much better and regain a lot of lost function with treatment. Sorry you had to hear thoughtless comments. I think some people have no filter. I've heard many of them myself, I think that could be the topic of a whole another thread. Are you still in the hospital or back home?

[alicia_b]

Yes, thinker, I'm at home. Yay! I just wish the Colts (football) would get to the superbowl. Right now they are losing. :(

Attitude is an important part of healing.

[alicia_b]

Lol. The Colts are doing really bad.
Seahawks played well tonight.

[annekat]

Lol. The Colts are doing really bad.
Seahawks played well tonight. Sorry the Colts are doing badly. But, Go Seahawks! I just posted and deleted because I wasn't watching the game today and didn't know who won, so had to go look. Shows what a football fan I really am.... NOT! But, it's pretty exciting for anyone in Washington state to know the Hawks are going to the Superbowl AGAIN!!! YAHOO!!!

[alicia_b]

I don't watch football, unless it's playoffs or the superbowl. Colts have 7 points, Patriots have 45 points with 3minutes left in the game.

[annekat]

I don't watch football, unless it's playoffs or the superbowl. Colts have 7 points, Patriots have 45 points with 3minutes left in the game. Me either... last game I watched was last year's Superbowl.

[renidrag]

Oh Anne, don't think I can like your Seahawks posts, being from just north of Foxboro.......Ma.
Dale

[alicia_b]

The superbowl is going to be exciting this year. I may watch it, definitely the halftime show. Those are usually interesting.

[annekat]

Oh Anne, don't think I can like your Seahawks posts, being from just north of Foxboro.......Ma.
Dale Well, Dale, I don't even know who is going against the Hawks in the Superbowl this year, or do we even know yet? Is it possibly your team? Like I said, I'm really not much of a football fan to begin with, and only get excited under these circumstances. I do not expect you to like my temporary enthusiasm over the Hawks, and in general, am not unhappy if your team does well! :smile1:

[Tom]

The title of your post had me wanting to say, No your not happy to be here!

It looks like you have one of those attitudes like mine! I have dealt with everything from broken back to cancer to Diabetes and losing part of my lung and going on oxygen 24/7 for severe COPD as a result of this horrible disease trying to take over my life!
My philosophy is when life throws me crap I pick it up and throw it right back at life! Your right not to get consumed by this! There is a lot of life out there to be enjoyed and I'm going to enjoy it! I'm only 58 years old and I have my limits, but so do healthy people, My limits are not like theirs , that's all!
That's one good Mom in law you have, the only transport my MIL did with regards to me was to pack up and go on vacation with us and me not knowing about it til the last minute, then have her complain about where she didn't want to stop for meals which I stopped where she didn't want to eat!
I finally told my wife that next time we were taking her mother in law on vacation, (My mom)! No disrespect for either mom, God rest their souls!

[alicia_b]

Tom, i love my attitude about this disease, lol. The first time i got out of the hospital, i had to have a "helper" stay with me and the toddlers bc i struggled to walk, and was still coughing up blood. The helper stayed while my husband was at work. I felt horrible. I had severe depression and very bad mental breakdowns, lasting for a few days at a time. Then one day, i got mad at myself for not trying / giving up. I was 25 and decided i wasn't going to allow this disease to control my life anymore. So i pushed myself to walk, then jog, now i can run again. It's not my high school track capability , but i can play with my kids now.
So by letting go of the control this disease had, i gained my new life. I'm now making a huge list of things i want to accomplish, like seeing all 50 states and hiking the rest Appalachian trail. I'll just have to work around all those monthly labs and check ups, lol.