Poconos, PA

[spiritscript]

Disabled 60-year-old mom. My 21-year-old Aspergers daughter lives at home with me. She's a great kid!
There are so many "used to's" in my life!

I "used to" work at Skytop Lodge, which I loved! I "used to" have an at home cake business, which I also loved. And I "used to" be a freelance writer, but less and less each year.

I am really fed up with so many problems with doctors, etc. It shouldn't have to take SO LONG for any diagnosis. And people who are suffering should be able to have the medications needed to have at least enough relief for somewhat of a life. Wegener's and other chronic diseases also affects families.

I have:
Wegener's, Sjogrens, RA, PsA, CES, RSD, Diabetes, Neuropathy, herniated discs, etc. I got ALL of these in the past 3 years after a minor surgery! I was just going to model some pretty clothes for big girls like me! But then all heck broke loose with my health. I used to be pretty, but now I don't even recognize myself. Truly, my poor health has turned me into a hideous freak. No, I don't judge anyone, including myself, by outward looks because I'm a firm believer that each of us is unique and beautiful, and that's the way God wants us! But I don't even look like "me" anymore. And I see too much discrimination with the elderly, poor, disabled, etc. these days. I love swimming, when I can. I love Halloween and Christmas! I love Jesus, and I do NOT believe Halloween is sinful. LOL I was born on Halloween, and I'm ok, well sort of. LOL

My daughter and I help feed feral and homeless cats. I had HIGH hopes of buying a little inn in Vermont, but there won't be NEAR enough from my divorce settlement. I keep feeling like I'm losing more and more. I am doing my best to make sure my daughter will be okay when I pass someday. Oh! And I love food! It's time to EAT! LOL It's so nice to meet all of you!
If I'm not here for a while, it's because I'm feeling awful.
The photo is Skytop Lodge; where I used to work.

[mrtmeo]

Hi Spirit and welcome!
This group is huge with so many folks with a wealth of experiences and support.
I am glad you are here to share your wealth too.
Wow, you sure have alot going on.

All this happened after a minor surgery.
Did you have a blood transfusion?
Are you in remission with the weg's, sjorgren's and/or PSA?
btw, that orange kitty makes me want to reach into my pc screen and get the belly!

[spiritscript]

Thank you!
No, not in remission and had to stop my Humira last month because I have one brain lesion and the headaches are getting worse. UGH! So I need to get new brain and lumbar MRIs.

No blood transfusion, just a simple (and not to gross you out) same day hemorrhoid removal surgery. After I healed from that and was not on pain med, all heck broke loose. I went to stand up and screamed in pain. It felt like I did a split by accident. Well from one test to the next showed Wegeners, cause my nose has been awful for 22 years, herniated discs that threw me into CES, etc.

My orange kitty's name is Hannibal. We rescued him. His brother, Lecter, lives with a neighbor. I'm serious! The people who had them before named them Hannibal and Lecter. LOL

Hi Spirit and welcome!
This group is huge with so many folks with a wealth of experiences and support.
I am glad you are here to share your wealth too.
Wow, you sure have alot going on.

All this happened after a minor surgery.
Did you have a blood transfusion?
Are you in remission with the weg's, sjorgren's and/or PSA?
btw, that orange kitty makes me want to reach into my pc screen and get the belly!

[mrtmeo]

Hannibal has a face just like an orange cat I had, named Tigger.
His belly gets me every time I see it....LOL

You said that you had problems with your nose for 22 years, could you have had weg's that long?
How long have u had the RA?

[kaysee]

Welcome Spirit,
I love your kitty too. Welcome to the forum. I am 68 years old and also divorced. I live alone with my cocker spaniel. It took over two years for my diagnosis. I have a lot of "used tos" as well, seems we all do. I had to retire from teaching this past June because of this dumb disease. You have come to a great place to get some good advice from people going through the same experience or to just vent when you need to.

[LisaMac]

Welcome, Spirit! I feel silly welcoming you since I've only been here since...like...yesterday.Whatever, I already feel like part of the fam.

It does sound like you have your hands full with all those acronyms, but I hope you can gather some semblance of a happy life. My appearance freaked me out at first, but I focused on joy and peace and people saw my countenance instead of my puffy face and bald head. Now that I'm in a more stable place my appearance has returned to a new normal. People really do respond to bright, cheerful eyes and a giant smile. "Fake it till you make it" I always told myself!

[mishb]

Hi Spirit
Welcome to the best forum in town. I'm so glad you found us.

What a horrid 3 years you have had, no-one should ever have to go through that much in one go, even though many on here do - unfortunately.

I love your sense of humour. You have to laugh because no-one takes any notice when you cry anyway

How long ago were you finally diagnosed and what meds are you taking?

[annekat]

Hi, Spirit, and welcome! So far, I'm really enjoying your posts, except for the unfortunate parts about your health issues and "used tos", of course, which you are dealing with as well as could be expected. Sometimes effective treatment takes a few years, and you may eventually be able to resume the activities that you've had to cut back on. I have a small pottery business and Wegs has taken its toll on my ability to produce a lot, but after almost 4 years of treatment, am feeling myself bounce back better than ever. Not that it takes everyone that long. But there are people on here who very actively ski, work out, and even one who has climbed Mt. Everest and runs sled dogs in the Iditarod race each year. So a cake business, writing, and working at a ski lodge are not at all out of the question. BTW, I am 62, so right in your age range, as are several of us on here.

I also help feed feral cats, and am a great cat lover in general. The farmers market where I sell pottery has a very small, established colony of only three cats, an old mama and two of her offspring, who have all been TNR'd. (Trap, neuter, and return, for those who don't know.) Before she was fixed, babies were popping up in people's stalls. I've taken home several of the babies and presently have three. Of course, being near a downtown waterfront area, there are probably dozens or even hundreds of other ferals nearby, who come out at night, but our little colony has rarely been intruded upon by other cats, and we just cannot encourage more at an open-air farmers market setting. We are lucky the management lets us keep the ones we have. Occasionally we will have raccoons around, so try not to leave food out unmonitored. I could go on and on and am only telling you this because you are a fellow cat lover and rescuer.

So, anyway, I'm glad to hear your story, and that you have joined this wonderful group of people. There's plenty of time to hear more about each other's Wegeners and all. If you are on Facebook, so are a bunch of us and I can get you involved there if you'd like, just let me know either here or by private message. We can initiate a friend request and get you hooked up with some individuals and some groups if you are not already aware of them. Looking forward to more posts from you!

[Debbie C]

Hi Spirit, I also just wanted to welcome you to the group. I am sorry to hear ALL the issues you have.Are you on SS disability,that will help a lot if you need it ? Have you tried the Hosp. in Philly or even the University of Cleveland Hosp.,they both have excellent drs as well as Cleveland Clinic. That's one thing with this disease,you need a different dr for just about every part of you . I think I have at least 7. Good luck to you and I hope you find a dr with the right meds for you soon.

[annekat]

Are you on SS disability,that will help a lot if you need it ?

I had no problem getting SS Disability at age 58, though some younger people have had more trouble. Having worked at the ski lodge and no longer being able to, you probably qualify. Just an encouragement in case you haven't already looked into this.