Re: Re: Fw: Hi

August 20, 2009

visit greenworkscleaners.com Yeah, I am figuring they are going to put me thru the ringer when I got 9-2. The thing that really worries me is my handwriting has gotten so bad I am really afraid my motor skills are being affected and that would mean the lupus has attacked my central nervous system. If that is the case, I am almost certain rheumie will do brain scans and that is really scary!! I need to update my signature line. I

deleted it when I got out of the group, so next post I will try and get it back on. Sorry to say I have to add more to the list!! I have tried to google research on mixed connective tissue disease, and nothing I have found looks very promising. Oh well, I will deal with it just like everything else. One day at a time. They still keep telling me I probably won't see 50, but I won't be 49 until February and I am still not on O2 yet, so I keep hoping they are wrong. I have awakened with a stuffy nose the last 4 or 5 days and I have had this crap long enough to know the signs when I am getting sick again. Yesterday, I was extremely tired all day, and this morning, I woke up with fever and a migraine AND a stuffy nose where I couldn't breathe. I am supposed to start work at 8 a.m. and I didn't even wake up until 10 a.m. As soon as I opened my eyes, it is storming here today, so didn't even have the

full sun effect coming through the window and I couldn't even open my eyes without pain, so I emailed work, told her I had fever and a migraine and I was going to lie back down for an hour or two and then try again. Beth (my supervisor) said ok, hope you feel better. She is the BEST!!! Her father actually has PF, too, so she can relate when I can't make it. She really goes out of her way sometimes to work with me and I really appreciate her. Anyhoo, I took a Lorcet, went back to bed and woke up again at noon, still had the headache, but not as bad as earlier. It was tolerable, but then I was nauseous. I went ahead and worked 6 hours only cuz I need the money so bad!!! Since my pulmodude here said if I get coughing or wheezing, a cold, jaundice, etc., come in right away and get blood work, I guess I am going to go in tomorrow afternoon and get blood work and my monthly B12 shot which is a month overdue again due

to financial reasons. If everything goes like I plan, I am going to quit work and apply for disability whenever I get my tax refund next year, which I am hoping will be around the end of January or the beginning of February. The thing is, in this city, everyone tells me that you don't get back paid from the date you file unless it is over 6 months. My cousin said her first check was 1 day before the 6 months and they sent her a check for 1 month. I have disability insurance through my job that pays 1/2 of your salary for 2 years if you are disabled, so I will have that, too, but they don't pay until 150 days after the date you file. So basically, I will probably between State and Federal tax get back close to $4000 and I will have to live off of that for 5 months. I am hoping to go in November to my family physician and I am planning to get everything I possibly can switched over to generic (preferably on the

Wal-Mart $4 list), and the day I put in my 2-week's notice, I am going to ask for 90-day prescription on all my meds, so at least I will have insurance paying part of it for months, anyway. The other 2 months, I will either beg for samples, pay for it, or do without. I have tried to go on SS Disability website to find out everything I need to have ahead of time. I think probably the most problem I am going to have is getting all my medical records together. What a pain!! I have an appointment in December to see Dr. deAndrade at UAB in Birmingham so I am going to try and get my records then while I am there anyway. Figured if I ask for them by mail, it will take forever. So that is where I am now. Trying to plan ahead but don't really know where I am going --

OMG! I have missed you guys SOOOO much!!! I am in tears as I am writing this. I was totally lost without you all!!

I am sorry to hear that you have mixed connective tissue disease too, Funny how they can call it something else when you have a bunch of diseases rolled into one!! I went on Facebook and joined the PF Foundation and the Lupus foundation. They say for everyone that joins, they donate money for a cure. I hope that is the case, cuz I recruited everyone I know!!! I haven't checked yet to see if they have a foundation for mixed connective tissue disease, Sjogren's, polymyositis, or dermatomyositis, but if they do, I will definitely be pushing for those, too!! Don''t be surprise you guys if you invites from me from everywhere!!

One more question -- Does anyone know in Mississippi, can you work XXX amount of hours and still receive disability? I have had some people tell me, no you can't work at all, and then I have had other people tell me you can work up to 20 hours a week. I am just trying to figure out what I am going to be dealing with ahead of time. I definitely am going to have to quit work. Between the handwriting so bad and a couple of days ago, I was transcribing a report and I got so sleepy I thought I was gonna fall out of the chair, so I saved the report, punched out, and took a nap. Got up 30 minutes later, and I went back and proofed the report and OMG!! I had typed something that as total jibberish!! I must have hit keys after I fell asleep in the chair! Thank GOD I did not send it!! My reports go straight to the clinic!! I would have been SOOOO Fired!!! I am doing my best to hold out until the

first of the year, only cuz I have to have money to make it on for a few months and right now I am totally BUSTED!! I will just have to proof and reproof and proof again until I quit, which is SOOOO going to take away from my line count and my paycheck, but at least I won't get fired. That was so an eye popper and a wake up call for me on how far I have really gone down. Not a pretty picture.

BUT -- To quote Beyonce " I'M A SURVIVOR, I'M NOT GONNA GIVE UP"

So I hope you all have a wonderful night and a great day tomorrow!! I am back and here for you all!! Hang in there!! We all have each other!!

Caro

To: Breathe-Support Sent: Thursday, August 20, 2009 9:35:42 PMSubject: Re: Fw: Hi Oh NO Caro...not you tooooooooooooooooo. ..I think we need to form a 'Gremlin Support Group' within this forum!It's great to hear from you again. Wow you're dealing with so much...big hugs top you girl!lotsa love,GIO>> > > > > ----- Forwarded Message ----> Sent: Thursday, August 20, 2009 1:23:51 AM> Subject: Re: Hi> > > Thanks so much MB!!! After a big run around of being totally brain dead, I guess I figured out how to get another email account!! So much has happened since the big mixup!! I

have found a lot of u guys on Facebook and that was a real blessing! They have definitely determined now that I have pulmonary fibrosis ( UIP), polymyositis, dermatomyositis, Sjogren syndrome, and now 3 weeks ago I have lupus (SLE), so basically since I have multiple autoimmune diseases, they are calling it "mixed connective tissue syndrome" and I have an appointment to see a rheumatologist at UAB (Birmingham) on September 2. They sent me paperwork in the mail and I got it the day before yesterday. Says I should be prepared to stay if I am new patient, cuz they will probably do lab tests and xrays, etc..... Also, I have appointment with OB-GYN-ONCO on August 28 for another colposcopy/biopsy and then depending on results, probable laser surgery. The real thing I> am dealing with right now is the doc in Birmingham (my pulmo) said I need to have liver function tests once a week as long as I am on the

prednisone and Imuran and that was cool, ok, I can deal with that. He said he was going to put in an order to make sure it got done. He asked me have they been doing LFTs? I said yes, and he said they haven't been sending me a copy. Ok, I go to my local pulmodude and tell him what Dr. deAndrade said in Birmingham and that was that my lungs are stable and if I had to have open-heart surgery tomorrow, he thinks my lungs would make it. (YEAH!, that was around the first of July). Okay, when I tell him what he said, he said, here's what I want you to do -- If you get a cough, hear wheezing, get jaundiced, or have a fever, come by the office and we will do blood work right away. Other than that, my next appointment is scheduled for January!! I did some research on the Net and lupus can affect nearly every> organ in your body. I have noticed the last couple of months, I have noticed I have had

trouble with my handwriting. I googled " can lupus affect motor skills?" and yes, it can affect the central nervous system, which will affect your handwriting. I can make out a grocery list and then go back the next week and can't even read what I wrote. I look at it, and I am like, what the heck is that? That is one major question I have for the rheumatologist at UAB when I go on 9-2-09. This is really frustrating. The other thing is the "butterfly rash " on your face. This rash TOTALLY SUCKS!!! I got it last summer and it was all blamed on swimming in the pool. This summer, I have had it for 3 months now. It is 10 times worse than it was last summer and it burns and itches constantly. The doc in Birmingham told me to put lotion on it and keep it moist and that would work. yeah, keeps it from burning, but doesn't make it go away. I was> told by my pulmo dude here to put

sunblock on it and that would work (I am definitely NOT going to stay inside all the time). Well, that didn't work, either. I have a rash on my face for the last 3 months that goes all the way around my nose, then around my mouth in a circle and now is a patch between my eyebrows. I have tried covering it with Cover Girl when I go out in public and it helps, but still does not cover it. So embarrassing! ! Guess I am just going to have to deal with it. I noticed the other night when I took a shower that I am starting to get a rash on my leg too..> > On a good note, I have lost 21 pounds since February, so that is a good thing. I am still 4' 10" and weigh 137 pounds, but hey, 137 is WAY BETTER THAN 158 that I was in February from the prednisone. I am hoping to get out and start walking again next month when it cools off a bit. Is still right at 100 degrees here everyday and I just can't

get out and walk in the heat.> > Enough about me!! I miss you guys SOOOOOOO much!! I am so glad I finally found a way to get back to you again!! Please know how much I have loved and missed you guys!!> > Hope you all have a wonderful night!> > Caro> Welcome back girlfriend!> > > > ____________ _________ _________ __> > To: carowade44@. ..> Sent: Wednesday, August 19, 2009 8:36:14 PM> Subject: Hi>

August 20, 2009

Hey !!! Glad to talk to you again!! I missed ya!!!

Caro

To: Breathe-Support Sent: Thursday, August 20, 2009 10:17:33 PMSubject: Re: Fw: Hi

Hi again Caro!Yeah for you! You go girl. S>> > > > > ----- Forwarded Message ----> From: Carolyn Wade <carowade44@ ...>> To: MBMurtha <mbmurtha@.. .>> Sent: Thursday, August 20, 2009 1:23:51 AM> Subject: Re: Hi> > > Thanks so much MB!!! After a big run around of being totally brain dead, I guess I figured out how to get another email account!! So much has happened since the big mixup!! I have found a lot of u guys on Facebook and that was a real blessing! They have definitely determined now that I have pulmonary fibrosis ( UIP), polymyositis, dermatomyositis, Sjogren syndrome, and now 3

weeks ago I have lupus (SLE), so basically since I have multiple autoimmune diseases, they are calling it "mixed connective tissue syndrome" and I have an appointment to see a rheumatologist at UAB (Birmingham) on September 2. They sent me paperwork in the mail and I got it the day before yesterday. Says I should be prepared to stay if I am new patient, cuz they will probably do lab tests and xrays, etc..... Also, I have appointment with OB-GYN-ONCO on August 28 for another colposcopy/biopsy and then depending on results, probable laser surgery. The real thing I> am dealing with right now is the doc in Birmingham (my pulmo) said I need to have liver function tests once a week as long as I am on the prednisone and Imuran and that was cool, ok, I can deal with that. He said he was going to put in an order to make sure it got done. He asked me have they been doing LFTs? I said yes, and he said they

haven't been sending me a copy. Ok, I go to my local pulmodude and tell him what Dr. deAndrade said in Birmingham and that was that my lungs are stable and if I had to have open-heart surgery tomorrow, he thinks my lungs would make it. (YEAH!, that was around the first of July). Okay, when I tell him what he said, he said, here's what I want you to do -- If you get a cough, hear wheezing, get jaundiced, or have a fever, come by the office and we will do blood work right away. Other than that, my next appointment is scheduled for January!! I did some research on the Net and lupus can affect nearly every> organ in your body. I have noticed the last couple of months, I have noticed I have had trouble with my handwriting. I googled " can lupus affect motor skills?" and yes, it can affect the central nervous system, which will affect your handwriting. I can make out a grocery list and then go back

the next week and can't even read what I wrote. I look at it, and I am like, what the heck is that? That is one major question I have for the rheumatologist at UAB when I go on 9-2-09. This is really frustrating. The other thing is the "butterfly rash " on your face. This rash TOTALLY SUCKS!!! I got it last summer and it was all blamed on swimming in the pool. This summer, I have had it for 3 months now. It is 10 times worse than it was last summer and it burns and itches constantly. The doc in Birmingham told me to put lotion on it and keep it moist and that would work. yeah, keeps it from burning, but doesn't make it go away. I was> told by my pulmo dude here to put sunblock on it and that would work (I am definitely NOT going to stay inside all the time). Well, that didn't work, either. I have a rash on my face for the last 3 months that goes all the way around

my nose, then around my mouth in a circle and now is a patch between my eyebrows. I have tried covering it with Cover Girl when I go out in public and it helps, but still does not cover it. So embarrassing! ! Guess I am just going to have to deal with it. I noticed the other night when I took a shower that I am starting to get a rash on my leg too..> > On a good note, I have lost 21 pounds since February, so that is a good thing. I am still 4' 10" and weigh 137 pounds, but hey, 137 is WAY BETTER THAN 158 that I was in February from the prednisone. I am hoping to get out and start walking again next month when it cools off a bit. Is still right at 100 degrees here everyday and I just can't get out and walk in the heat.> > Enough about me!! I miss you guys SOOOOOOO much!! I am so glad I finally found a way to get back to you again!! Please know how much I have loved

and missed you guys!!> > Hope you all have a wonderful night!> > Caro> Welcome back girlfriend!> > > > ____________ _________ _________ __> > From: MBMurtha <mbmurtha@.. .>> To: carowade44@. ..> Sent: Wednesday, August 19, 2009 8:36:14 PM> Subject: Hi>

August 20, 2009

Hi Dyane,

I am sad to hear that anyone besides me has this crap!! I can relate to the ex-husband comment!! I had a "WOE IS ME" moment one day last week and decided to look up the last guy I was gonna marry 10 years ago. OMG!! I have not talked to him in about 5 years and that was a phone call that lasted about 10 minutes and other than that I have not seen him since 1999. I call and some female answers and I ask to speak to Rex. She says, can I ask who is calling? I said Carolyn. Then she says, "IT'S YO BITCH!!!" I am like, OMG!! My mouth flew open and then he gets on the phone and I start apologizing for not wanting to start any trouble and that is not why I called and ask is this the Rex I used to be with? He says yeah in a really angry voice and tells me I shouldn't call this number any more. Then he hangs up. Well, I called

right back to try and explain and the female answers again and I told her same story, was just that I am really sick, gonna die, and I was just wondering whatever happpened to him and I wish him all the best. She says he has the best and hung up.!! Well, I got a little teary-eyed at first, cuz I guess some part of me was hoping we could be friends, but then after a few days, I am like, ya know, I actually feel pretty good, cuz that sucker stole from me, cheated on me, stole from my kids, was mean to my kids, beat on me, and now he has got someone obviously treating him like crap and I really don't care if I ever talk to him again,and no I won't ever try!! SOOO I would consider sending him a few!!!

I am so confused about mixed CTD? I am trying to get all the info I can get on the Net but am still confused. Am hoping my visit to UAB in September will give me more insight. I wish if I had to have a rash, it could be anywhere else, 'cept my face. Sometimes I wake up at night and I am rubbing my face from the burning and itchng. It is awful!! I have had it for 3 months now. Hopefully, the rheumie can give me something to treat it and get rid of it. So far nothing I have tried is working. I was putting Neosporin Pain on it and my pulmo at UAB said that makes it worse!! Just use lotion when inside and Sunblock when outside and that should make it better!! NOT!! I bought some hydrocortisome cream OTC and tried that and when I first put it on, it makes it burn worse, but then after about 5 minutes or so, it cools off !! Still doesn't go away. Guess I will have to wait for the

rheumie!!

I researched and found that standard treatment for lupus rash is methotrex and/or Plaquenil and steroid creams, so will just wait another couple of weeks and see what they say.

I hope you are okay and please let me know on your journey with this crap if they tell you anything different that I don't know and I will do the same. Hopefully we can help each other through this! Like you, I am glad to know we are not alone!!

CaroCarolyn WadeCOPD 2005, UIP January 2007, Fatty liver disease June 2009, Lupus (SLE) August 2009, July 2009, mixed connective tissue disease August 2009

To: Breathe-Support Sent: Thursday, August 20, 2009 10:00:50 PMSubject: Re: Fw: Hi

Carolyn/Carolyn I'm very glad to hear from you again and very sorry for everything you are going through. 's post gave me the same response. Please understand what I mean when I say all day I have been jumping up and down (figuratively) going LOOK LOOK People like me! I have spent my whole life trying to get doctors to pay attention, but when the main blood test show negative no one was ever interested in going any farther. To see both your posts on one day with all those horrible autoimmune/ctd issues was like some weird epifany. To see people like me actually get dx (as horrible as that is) it give me hope that maybe someone will tell me I'm really are not crazy, there really has been something wrong with you. The fact that there is so much more being done now re: auto immune is sooo encouraging. I know 20 years ago people laughed when you told them you had chronic

fatigue or fibromyalgia. No one had heard of Sjogrens or Raynauds outside of specialists. I really hope you understand the intent with which I write this. I would never wish our problems on my worst enemy..well ok my ex husband could get a few...but it is sooo nice not to be alone any more. My love to both of you and here is hoping now that the docs know what to look for, they will be nuking the gremlins as fast as possible!!Dyane Phoenix ipf 02>> > > > > ----- Forwarded Message ----> Sent: Thursday, August 20, 2009 1:23:51 AM> Subject: Re: Hi> > > Thanks so much MB!!! After a big run around of being totally brain dead, I guess I figured out how to get

another email account!! So much has happened since the big mixup!! I have found a lot of u guys on Facebook and that was a real blessing! They have definitely determined now that I have pulmonary fibrosis ( UIP), polymyositis, dermatomyositis, Sjogren syndrome, and now 3 weeks ago I have lupus (SLE), so basically since I have multiple autoimmune diseases, they are calling it "mixed connective tissue syndrome" and I have an appointment to see a rheumatologist at UAB (Birmingham) on September 2. They sent me paperwork in the mail and I got it the day before yesterday. Says I should be prepared to stay if I am new patient, cuz they will probably do lab tests and xrays, etc..... Also, I have appointment with OB-GYN-ONCO on August 28 for another colposcopy/biopsy and then depending on results, probable laser surgery. The real thing I> am dealing with right now is the doc in Birmingham (my pulmo)

said I need to have liver function tests once a week as long as I am on the prednisone and Imuran and that was cool, ok, I can deal with that. He said he was going to put in an order to make sure it got done. He asked me have they been doing LFTs? I said yes, and he said they haven't been sending me a copy. Ok, I go to my local pulmodude and tell him what Dr. deAndrade said in Birmingham and that was that my lungs are stable and if I had to have open-heart surgery tomorrow, he thinks my lungs would make it. (YEAH!, that was around the first of July). Okay, when I tell him what he said, he said, here's what I want you to do -- If you get a cough, hear wheezing, get jaundiced, or have a fever, come by the office and we will do blood work right away. Other than that, my next appointment is scheduled for January!! I did some research on the Net and lupus can affect nearly every> organ in your

body. I have noticed the last couple of months, I have noticed I have had trouble with my handwriting. I googled " can lupus affect motor skills?" and yes, it can affect the central nervous system, which will affect your handwriting. I can make out a grocery list and then go back the next week and can't even read what I wrote. I look at it, and I am like, what the heck is that? That is one major question I have for the rheumatologist at UAB when I go on 9-2-09. This is really frustrating. The other thing is the "butterfly rash " on your face. This rash TOTALLY SUCKS!!! I got it last summer and it was all blamed on swimming in the pool. This summer, I have had it for 3 months now. It is 10 times worse than it was last summer and it burns and itches constantly. The doc in Birmingham told me to put lotion on it and keep it moist and that would work. yeah, keeps it from

burning, but doesn't make it go away. I was> told by my pulmo dude here to put sunblock on it and that would work (I am definitely NOT going to stay inside all the time). Well, that didn't work, either. I have a rash on my face for the last 3 months that goes all the way around my nose, then around my mouth in a circle and now is a patch between my eyebrows. I have tried covering it with Cover Girl when I go out in public and it helps, but still does not cover it. So embarrassing! ! Guess I am just going to have to deal with it. I noticed the other night when I took a shower that I am starting to get a rash on my leg too..> > On a good note, I have lost 21 pounds since February, so that is a good thing. I am still 4' 10" and weigh 137 pounds, but hey, 137 is WAY BETTER THAN 158 that I was in February from the prednisone. I am hoping to get out and start walking again next month when it

cools off a bit. Is still right at 100 degrees here everyday and I just can't get out and walk in the heat.> > Enough about me!! I miss you guys SOOOOOOO much!! I am so glad I finally found a way to get back to you again!! Please know how much I have loved and missed you guys!!> > Hope you all have a wonderful night!> > Caro> Welcome back girlfriend!> > > > ____________ _________ _________ __> > To: carowade44@. ..> Sent: Wednesday, August 19, 2009 8:36:14 PM> Subject: Hi>

August 20, 2009

Thanks Dyane, I really needed that!!

Carolyn WadeCOPD 2005, UIP January 2007, Fatty liver disease June 2009, Lupus (SLE) August 2009, July 2009, mixed connective tissue disease August 2009

To: Breathe-Support Sent: Thursday, August 20, 2009 10:53:28 PMSubject: Re: Fw: Hi

Carolyn, One of the new rules that Obama put in place was that people who were laid off or fired before 12-31-09 are eligible for a Cobra subsidy. Instead of having to pay the full amount for insurance if you elect cobra you would only have to pay 35% for nine months. Your employer gets the subsidy back on their 941 taxes. Since your employer works with you, have them "fire" you. I'm not sure about earning money on disability but I will see what I can find out for you tomorrow. I do know having a "terminal" disease helps getting disability on the first try. My wonderful husband who was on disability for 4.5 years after his lung cancer was found was not expected to make 1 year. So enjoy your 50th birthday!Dyane Phoenix> >> > > > > > > > > > ----- Forwarded Message ----> > From: Carolyn Wade carowade44@ ..> > To: MBMurtha mbmurtha@> > Sent: Thursday, August 20, 2009 1:23:51 AM> > Subject: Re: Hi> > > > > > Thanks so much MB!!! After a big run around of being totally brain dead, I guess I figured out how to get another email

account!! So much has happened since the big mixup!! I have found a lot of u guys on Facebook and that was a real blessing! They have definitely determined now that I have pulmonary fibrosis ( UIP), polymyositis, dermatomyositis, Sjogren syndrome, and now 3 weeks ago I have lupus (SLE), so basically since I have multiple autoimmune diseases, they are calling it "mixed connective tissue syndrome" and I have an appointment to see a rheumatologist at UAB (Birmingham) on September 2. They sent me paperwork in the mail and I got it the day before yesterday. Says I should be prepared to stay if I am new patient, cuz they will probably do lab tests and xrays, etc..... Also, I have appointment with OB-GYN-ONCO on August 28 for another colposcopy/biopsy and then depending on results, probable laser surgery. The real thing I> > am dealing with right now is the doc in Birmingham (my pulmo) said I need

to have liver function tests once a week as long as I am on the prednisone and Imuran and that was cool, ok, I can deal with that. He said he was going to put in an order to make sure it got done. He asked me have they been doing LFTs? I said yes, and he said they haven't been sending me a copy. Ok, I go to my local pulmodude and tell him what Dr. deAndrade said in Birmingham and that was that my lungs are stable and if I had to have open-heart surgery tomorrow, he thinks my lungs would make it. (YEAH!, that was around the first of July). Okay, when I tell him what he said, he said, here's what I want you to do -- If you get a cough, hear wheezing, get jaundiced, or have a fever, come by the office and we will do blood work right away. Other than that, my next appointment is scheduled for January!! I did some research on the Net and lupus can affect nearly every> > organ in your body. I

have noticed the last couple of months, I have noticed I have had trouble with my handwriting. I googled " can lupus affect motor skills?" and yes, it can affect the central nervous system, which will affect your handwriting. I can make out a grocery list and then go back the next week and can't even read what I wrote. I look at it, and I am like, what the heck is that? That is one major question I have for the rheumatologist at UAB when I go on 9-2-09. This is really frustrating. The other thing is the "butterfly rash " on your face. This rash TOTALLY SUCKS!!! I got it last summer and it was all blamed on swimming in the pool. This summer, I have had it for 3 months now. It is 10 times worse than it was last summer and it burns and itches constantly. The doc in Birmingham told me to put lotion on it and keep it moist and that would work. yeah, keeps it from burning, but

doesn't make it go away. I was> > told by my pulmo dude here to put sunblock on it and that would work (I am definitely NOT going to stay inside all the time). Well, that didn't work, either. I have a rash on my face for the last 3 months that goes all the way around my nose, then around my mouth in a circle and now is a patch between my eyebrows. I have tried covering it with Cover Girl when I go out in public and it helps, but still does not cover it. So embarrassing! ! Guess I am just going to have to deal with it. I noticed the other night when I took a shower that I am starting to get a rash on my leg too..> > > > On a good note, I have lost 21 pounds since February, so that is a good thing. I am still 4' 10" and weigh 137 pounds, but hey, 137 is WAY BETTER THAN 158 that I was in February from the prednisone. I am hoping to get out and start walking again next month when

it cools off a bit. Is still right at 100 degrees here everyday and I just can't get out and walk in the heat.> > > > Enough about me!! I miss you guys SOOOOOOO much!! I am so glad I finally found a way to get back to you again!! Please know how much I have loved and missed you guys!!> > > > Hope you all have a wonderful night!> > > > Caro> > Welcome back girlfriend!> > > > > > > > ____________ _________ _________ __> > > > From: MBMurtha mbmurtha@> > To: carowade44@ ..> > Sent: Wednesday, August 19, 2009 8:36:14 PM> > Subject: Hi> >>

August 21, 2009

when i retired on disability in 2006, i was told the amount that you are allowed to earn

but i don't remember and the laws change daily lol

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Fw: HiTo: Breathe-Support Date: Thursday, August 20, 2009, 11:53 PM

Carolyn, One of the new rules that Obama put in place was that people who were laid off or fired before 12-31-09 are eligible for a Cobra subsidy. Instead of having to pay the full amount for insurance if you elect cobra you would only have to pay 35% for nine months. Your employer gets the subsidy back on their 941 taxes. Since your employer works with you, have them "fire" you. I'm not sure about earning money on disability but I will see what I can find out for you tomorrow. I do know having a "terminal" disease helps getting disability on the first try. My wonderful husband who was on disability for 4.5 years after his lung cancer was found was not expected to make 1 year. So enjoy your 50th birthday!Dyane Phoenix> >> > > > > > > > > > ----- Forwarded Message ----> > From: Carolyn Wade carowade44@ ..> > To: MBMurtha mbmurtha@> > Sent: Thursday, August 20, 2009 1:23:51 AM> > Subject: Re: Hi> > > > > > Thanks so much MB!!! After a big run around of being totally brain dead, I guess I figured out how to get another email

account!! So much has happened since the big mixup!! I have found a lot of u guys on Facebook and that was a real blessing! They have definitely determined now that I have pulmonary fibrosis ( UIP), polymyositis, dermatomyositis, Sjogren syndrome, and now 3 weeks ago I have lupus (SLE), so basically since I have multiple autoimmune diseases, they are calling it "mixed connective tissue syndrome" and I have an appointment to see a rheumatologist at UAB (Birmingham) on September 2. They sent me paperwork in the mail and I got it the day before yesterday. Says I should be prepared to stay if I am new patient, cuz they will probably do lab tests and xrays, etc..... Also, I have appointment with OB-GYN-ONCO on August 28 for another colposcopy/biopsy and then depending on results, probable laser surgery. The real thing I> > am dealing with right now is the doc in Birmingham (my pulmo) said I need

to have liver function tests once a week as long as I am on the prednisone and Imuran and that was cool, ok, I can deal with that. He said he was going to put in an order to make sure it got done. He asked me have they been doing LFTs? I said yes, and he said they haven't been sending me a copy. Ok, I go to my local pulmodude and tell him what Dr. deAndrade said in Birmingham and that was that my lungs are stable and if I had to have open-heart surgery tomorrow, he thinks my lungs would make it. (YEAH!, that was around the first of July). Okay, when I tell him what he said, he said, here's what I want you to do -- If you get a cough, hear wheezing, get jaundiced, or have a fever, come by the office and we will do blood work right away. Other than that, my next appointment is scheduled for January!! I did some research on the Net and lupus can affect nearly every> > organ in your body. I

have noticed the last couple of months, I have noticed I have had trouble with my handwriting. I googled " can lupus affect motor skills?" and yes, it can affect the central nervous system, which will affect your handwriting. I can make out a grocery list and then go back the next week and can't even read what I wrote. I look at it, and I am like, what the heck is that? That is one major question I have for the rheumatologist at UAB when I go on 9-2-09. This is really frustrating. The other thing is the "butterfly rash " on your face. This rash TOTALLY SUCKS!!! I got it last summer and it was all blamed on swimming in the pool. This summer, I have had it for 3 months now. It is 10 times worse than it was last summer and it burns and itches constantly. The doc in Birmingham told me to put lotion on it and keep it moist and that would work. yeah, keeps it from burning, but

doesn't make it go away. I was> > told by my pulmo dude here to put sunblock on it and that would work (I am definitely NOT going to stay inside all the time). Well, that didn't work, either. I have a rash on my face for the last 3 months that goes all the way around my nose, then around my mouth in a circle and now is a patch between my eyebrows. I have tried covering it with Cover Girl when I go out in public and it helps, but still does not cover it. So embarrassing! ! Guess I am just going to have to deal with it. I noticed the other night when I took a shower that I am starting to get a rash on my leg too..> > > > On a good note, I have lost 21 pounds since February, so that is a good thing. I am still 4' 10" and weigh 137 pounds, but hey, 137 is WAY BETTER THAN 158 that I was in February from the prednisone. I am hoping to get out and start walking again next month when

it cools off a bit. Is still right at 100 degrees here everyday and I just can't get out and walk in the heat.> > > > Enough about me!! I miss you guys SOOOOOOO much!! I am so glad I finally found a way to get back to you again!! Please know how much I have loved and missed you guys!!> > > > Hope you all have a wonderful night!> > > > Caro> > Welcome back girlfriend!> > > > > > > > ____________ _________ _________ __> > > > From: MBMurtha mbmurtha@> > To: carowade44@ ..> > Sent: Wednesday, August 19, 2009 8:36:14 PM> > Subject: Hi> >>

August 21, 2009

caro

call social security

get their packet for medical disability

ask social security all of the questions that you are asking

in the packet are forms for release of medical records

you give them the signed forms and they will contact the docs

if necessary, make an appointment with them

that way you will know what you need and what you are entitled to

the most unfair thing about going on social security disablity is the 2 year wait for medicare

my medical coverage at that time cost "several arms and several legs" lol

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: Fw: HiTo: Breathe-Support Date: Thursday, August 20, 2009, 11:25 PM

visit greenworkscleaners.com

Yeah, I am figuring they are going to put me thru the ringer when I got 9-2. The thing that really worries me is my handwriting has gotten so bad I am really afraid my motor skills are being affected and that would mean the lupus has attacked my central nervous system. If that is the case, I am almost certain rheumie will do brain scans and that is really scary!! I need to update my signature line. I deleted it when I got out of the group, so next post I will try and get it back on. Sorry to say I have to add more to the list!! I have tried to google research on mixed connective tissue disease, and nothing I have found looks very promising. Oh well, I will deal with it just like everything else. One day at a time. They still keep telling me I probably won't see 50, but I won't be 49 until February and I am still not on O2 yet, so I keep hoping they are wrong. I have awakened with a

stuffy nose the last 4 or 5 days and I have had this crap long enough to know the signs when I am getting sick again. Yesterday, I was extremely tired all day, and this morning, I woke up with fever and a migraine AND a stuffy nose where I couldn't breathe. I am supposed to start work at 8 a.m. and I didn't even wake up until 10 a.m. As soon as I opened my eyes, it is storming here today, so didn't even have the full sun effect coming through the window and I couldn't even open my eyes without pain, so I emailed work, told her I had fever and a migraine and I was going to lie back down for an hour or two and then try again. Beth (my supervisor) said ok, hope you feel better. She is the BEST!!! Her father actually has PF, too, so she can relate when I can't make it. She really goes out of her way sometimes to work with me and I really appreciate her. Anyhoo, I took a Lorcet, went back to bed and woke up

again at noon, still had the headache, but not as bad as earlier. It was tolerable, but then I was nauseous. I went ahead and worked 6 hours only cuz I need the money so bad!!! Since my pulmodude here said if I get coughing or wheezing, a cold, jaundice, etc., come in right away and get blood work, I guess I am going to go in tomorrow afternoon and get blood work and my monthly B12 shot which is a month overdue again due to financial reasons. If everything goes like I plan, I am going to quit work and apply for disability whenever I get my tax refund next year, which I am hoping will be around the end of January or the beginning of February. The thing is, in this city, everyone tells me that you don't get back paid from the date you file unless it is over 6 months. My cousin said her first check was 1 day before the 6 months and they sent her a check for 1 month. I have disability insurance through my job that pays

1/2 of your salary for 2 years if you are disabled, so I will have that, too, but they don't pay until 150 days after the date you file. So basically, I will probably between State and Federal tax get back close to $4000 and I will have to live off of that for 5 months. I am hoping to go in November to my family physician and I am planning to get everything I possibly can switched over to generic (preferably on the Wal-Mart $4 list), and the day I put in my 2-week's notice, I am going to ask for 90-day prescription on all my meds, so at least I will have insurance paying part of it for months, anyway. The other 2 months, I will either beg for samples, pay for it, or do without. I have tried to go on SS Disability website to find out everything I need to have ahead of time. I think probably the most problem I am going to have is getting all my medical records together. What a pain!! I have an

appointment in December to see Dr. deAndrade at UAB in Birmingham so I am going to try and get my records then while I am there anyway. Figured if I ask for them by mail, it will take forever. So that is where I am now. Trying to plan ahead but don't really know where I am going --

OMG! I have missed you guys SOOOO much!!! I am in tears as I am writing this. I was totally lost without you all!!

I am sorry to hear that you have mixed connective tissue disease too, Funny how they can call it something else when you have a bunch of diseases rolled into one!! I went on Facebook and joined the PF Foundation and the Lupus foundation. They say for everyone that joins, they donate money for a cure. I hope that is the case, cuz I recruited everyone I know!!! I haven't checked yet to see if they have a foundation for mixed connective tissue disease, Sjogren's, polymyositis, or dermatomyositis, but if they do, I will definitely be pushing for those, too!! Don''t be surprise you guys if you invites from me from everywhere!!

One more question -- Does anyone know in Mississippi, can you work XXX amount of hours and still receive disability? I have had some people tell me, no you can't work at all, and then I have had other people tell me you can work up to 20 hours a week. I am just trying to figure out what I am going to be dealing with ahead of time. I definitely am going to have to quit work. Between the handwriting so bad and a couple of days ago, I was transcribing a report and I got so sleepy I thought I was gonna fall out of the chair, so I saved the report, punched out, and took a nap. Got up 30 minutes later, and I went back and proofed the report and OMG!! I had typed something that as total jibberish!! I must have hit keys after I fell asleep in the chair! Thank GOD I did not send it!! My reports go straight to the clinic!! I would have been SOOOO Fired!!! I am doing my best to hold out until the

first of the year, only cuz I have to have money to make it on for a few months and right now I am totally BUSTED!! I will just have to proof and reproof and proof again until I quit, which is SOOOO going to take away from my line count and my paycheck, but at least I won't get fired. That was so an eye popper and a wake up call for me on how far I have really gone down. Not a pretty picture.

BUT -- To quote Beyonce " I'M A SURVIVOR, I'M NOT GONNA GIVE UP"

So I hope you all have a wonderful night and a great day tomorrow!! I am back and here for you all!! Hang in there!! We all have each other!!

Caro

To: Breathe-Support Sent: Thursday, August 20, 2009 9:35:42 PMSubject: Re: Fw: Hi Oh NO Caro...not you tooooooooooooooooo. ..I think we need to form a 'Gremlin Support Group' within this forum!It's great to hear from you again. Wow you're dealing with so much...big hugs top you girl!lotsa love,GIO>> > > > > ----- Forwarded Message ----> Sent: Thursday, August 20, 2009 1:23:51 AM> Subject: Re: Hi> > > Thanks so much MB!!! After a big run around of being totally brain dead, I guess I figured out how to get another email account!! So much has happened since the big mixup!! I

have found a lot of u guys on Facebook and that was a real blessing! They have definitely determined now that I have pulmonary fibrosis ( UIP), polymyositis, dermatomyositis, Sjogren syndrome, and now 3 weeks ago I have lupus (SLE), so basically since I have multiple autoimmune diseases, they are calling it "mixed connective tissue syndrome" and I have an appointment to see a rheumatologist at UAB (Birmingham) on September 2. They sent me paperwork in the mail and I got it the day before yesterday. Says I should be prepared to stay if I am new patient, cuz they will probably do lab tests and xrays, etc..... Also, I have appointment with OB-GYN-ONCO on August 28 for another colposcopy/biopsy and then depending on results, probable laser surgery. The real thing I> am dealing with right now is the doc in Birmingham (my pulmo) said I need to have liver function tests once a week as long as I am on the

prednisone and Imuran and that was cool, ok, I can deal with that. He said he was going to put in an order to make sure it got done. He asked me have they been doing LFTs? I said yes, and he said they haven't been sending me a copy. Ok, I go to my local pulmodude and tell him what Dr. deAndrade said in Birmingham and that was that my lungs are stable and if I had to have open-heart surgery tomorrow, he thinks my lungs would make it. (YEAH!, that was around the first of July). Okay, when I tell him what he said, he said, here's what I want you to do -- If you get a cough, hear wheezing, get jaundiced, or have a fever, come by the office and we will do blood work right away. Other than that, my next appointment is scheduled for January!! I did some research on the Net and lupus can affect nearly every> organ in your body. I have noticed the last couple of months, I have noticed I have had

trouble with my handwriting. I googled " can lupus affect motor skills?" and yes, it can affect the central nervous system, which will affect your handwriting. I can make out a grocery list and then go back the next week and can't even read what I wrote. I look at it, and I am like, what the heck is that? That is one major question I have for the rheumatologist at UAB when I go on 9-2-09. This is really frustrating. The other thing is the "butterfly rash " on your face. This rash TOTALLY SUCKS!!! I got it last summer and it was all blamed on swimming in the pool. This summer, I have had it for 3 months now. It is 10 times worse than it was last summer and it burns and itches constantly. The doc in Birmingham told me to put lotion on it and keep it moist and that would work. yeah, keeps it from burning, but doesn't make it go away. I was> told by my pulmo dude here to put

sunblock on it and that would work (I am definitely NOT going to stay inside all the time). Well, that didn't work, either. I have a rash on my face for the last 3 months that goes all the way around my nose, then around my mouth in a circle and now is a patch between my eyebrows. I have tried covering it with Cover Girl when I go out in public and it helps, but still does not cover it. So embarrassing! ! Guess I am just going to have to deal with it. I noticed the other night when I took a shower that I am starting to get a rash on my leg too..> > On a good note, I have lost 21 pounds since February, so that is a good thing. I am still 4' 10" and weigh 137 pounds, but hey, 137 is WAY BETTER THAN 158 that I was in February from the prednisone. I am hoping to get out and start walking again next month when it cools off a bit. Is still right at 100 degrees here everyday and I just can't

get out and walk in the heat.> > Enough about me!! I miss you guys SOOOOOOO much!! I am so glad I finally found a way to get back to you again!! Please know how much I have loved and missed you guys!!> > Hope you all have a wonderful night!> > Caro> Welcome back girlfriend!> > > > ____________ _________ _________ __> > To: carowade44@. ..> Sent: Wednesday, August 19, 2009 8:36:14 PM> Subject: Hi>

__________________________________________________

August 21, 2009

My fatty liver says hi back!!! Hey that's a good one - I wouldn't mind sending him some hemorrhoids, too!! Good luck at National Jewish - I hope everything works out. CaroMissippi, COPD 2005, UIP January 2007, Sjogren syndrome July 2008, polymyositis/dermatomyositis November 2008, Fatty liver disease June 2009, Lupus (SLE)July 2009, mixed connective tissue disease August 2009

To: Breathe-Support Sent: Friday, August 21, 2009 10:51:49 AMSubject: Re: Fw: Hi

Carolyn,I laughed at your ex story...they are so the only ones I would wish thison + hemorriods ha!I don't have a lupus rash but I do have rosecia and psoriasis and yessteroid creams are what help. May take a while but once you get in aroutine. The only thing is the always tell you not to put it in creaseslike by your nose because they "thin" the skin. I always laugh and tellthem that scratching till it bleeds thins the skin too! Hope you canget that fixed soon.I am going to National Jewish in November and once I talk to someonethere am hoping they will do more in depth tests to diagnose me. Soundslike you will have your plate full at UAB.Oh yeah my fatty liver says hi to your fatty liver LOLHang in there!Dyane Phoenix ipf and stuff 02> >> >> >> >> >> > ----- Forwarded Message ----> > From: Carolyn Wade carowade44@ ..> > To: MBMurtha mbmurtha@> > Sent: Thursday, August 20, 2009 1:23:51 AM> > Subject: Re: Hi> >> >> > Thanks so much MB!!! After a big run around of being totally braindead, I

guess I figured out how to get another email account!! So muchhas happened since the big mixup!! I have found a lot of u guys onFacebook and that was a real blessing! They have definitely determinednow that I have pulmonary fibrosis ( UIP), polymyositis,dermatomyositis, Sjogren syndrome, and now 3 weeks ago I have lupus(SLE), so basically since I have multiple autoimmune diseases, they arecalling it "mixed connective tissue syndrome" and I have an appointmentto see a rheumatologist at UAB (Birmingham) on September 2. They sentme paperwork in the mail and I got it the day before yesterday. Says Ishould be prepared to stay if I am new patient, cuz they will probablydo lab tests and xrays, etc..... Also, I have appointment withOB-GYN-ONCO on August 28 for another colposcopy/biopsy and thendepending on results, probable laser surgery. The real thing I> > am dealing with right now is the doc in

Birmingham (my pulmo) said Ineed to have liver function tests once a week as long as I am on theprednisone and Imuran and that was cool, ok, I can deal with that. Hesaid he was going to put in an order to make sure it got done. He askedme have they been doing LFTs? I said yes, and he said they haven't beensending me a copy. Ok, I go to my local pulmodude and tell him what Dr.deAndrade said in Birmingham and that was that my lungs are stable andif I had to have open-heart surgery tomorrow, he thinks my lungs wouldmake it. (YEAH!, that was around the first of July). Okay, when I tellhim what he said, he said, here's what I want you to do -- If you get acough, hear wheezing, get jaundiced, or have a fever, come by the officeand we will do blood work right away. Other than that, my nextappointment is scheduled for January!! I did some research on the Netand lupus can affect nearly every> > organ

in your body. I have noticed the last couple of months, Ihave noticed I have had trouble with my handwriting. I googled " canlupus affect motor skills?" and yes, it can affect the central nervoussystem, which will affect your handwriting. I can make out a grocerylist and then go back the next week and can't even read what I wrote. Ilook at it, and I am like, what the heck is that? That is one majorquestion I have for the rheumatologist at UAB when I go on 9-2-09. Thisis really frustrating. The other thing is the "butterfly rash " on yourface.. This rash TOTALLY SUCKS!!! I got it last summer and it was allblamed on swimming in the pool. This summer, I have had it for 3 monthsnow. It is 10 times worse than it was last summer and it burns anditches constantly. The doc in Birmingham told me to put lotion on itand keep it moist and that would work. yeah, keeps it from burning, butdoesn't make it go away. I

was> > told by my pulmo dude here to put sunblock on it and that would work(I am definitely NOT going to stay inside all the time). Well, thatdidn't work, either. I have a rash on my face for the last 3 monthsthat goes all the way around my nose, then around my mouth in a circleand now is a patch between my eyebrows. I have tried covering it withCover Girl when I go out in public and it helps, but still does notcover it. So embarrassing! ! Guess I am just going to have to deal withit. I noticed the other night when I took a shower that I am startingto get a rash on my leg too..> >> > On a good note, I have lost 21 pounds since February, so that is agood thing. I am still 4' 10" and weigh 137 pounds, but hey, 137 is WAYBETTER THAN 158 that I was in February from the prednisone. I am hopingto get out and start walking again next month when it cools off a bit. Is still right at

100 degrees here everyday and I just can't get out andwalk in the heat..> >> > Enough about me!! I miss you guys SOOOOOOO much!! I am so glad Ifinally found a way to get back to you again!! Please know how much Ihave loved and missed you guys!!> >> > Hope you all have a wonderful night!> >> > Caro> > Welcome back girlfriend!> >> >> >> > ____________ _________ _________ __> >> > From: MBMurtha mbmurtha@> > To: carowade44@ ..> > Sent: Wednesday, August 19, 2009 8:36:14 PM> > Subject: Hi> >>

August 21, 2009

I had heard there was a wait on Medicare. My doc visits will probably be few and far between cept for what Medicaid will pay. I was told they only pay for 4 meds a month, so I was thinking I would let them pay the most expensive ones and then I would just have to pay for the rest. Trying to get as much as possible on Wal-Mart's $4 list, but I am finding that most of the meds for the diseases we have are not on the list unfortunately. CaroMissippi, COPD 2005, UIP January 2007, Sjogren syndrome July 2008, polymyositis/dermatomyositis November 2008, Fatty liver disease June 2009, Lupus (SLE)July 2009, mixed connective tissue disease August 2009

To: Breathe-Support Sent: Friday, August 21, 2009 8:18:17 AMSubject: Re: Re: Fw: Hi

caro

call social security

get their packet for medical disability

ask social security all of the questions that you are asking

in the packet are forms for release of medical records

you give them the signed forms and they will contact the docs

if necessary, make an appointment with them

that way you will know what you need and what you are entitled to

the most unfair thing about going on social security disablity is the 2 year wait for medicare

my medical coverage at that time cost "several arms and several legs" lol

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: Carolyn Wade <carowade44 (AT) yahoo (DOT) com>Subject: Re: Re: Fw: HiTo: Breathe-Support@ yahoogroups. comDate: Thursday, August 20, 2009, 11:25 PM

visit greenworkscleaners. com