Hello... Newly diagnosed, depressed.

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New Member

Date Joined Sep 2010
Total Posts : 8
   Posted 9/29/2010 2:43 PM (GMT -6)   
Hello everyone,
I have been a lurker for quite some time, I have  recently diagnosed with Pulmonary Fibrosis associated with Lupus.
My story getting this far is probably very very similar to all of you, I started feeling really odd in 2004 after a huge period of stress, muscles hurt, joints hurt etc etc, I worked 16 hours a day 7 days a week ( Bakery owner) and was soo tired. I figured it was the work load and soldiered on.
In 2006, we sold that darned Bakery and for a about a year I didn't work at all. The aches and pains eased off and I really then thought it was the work load. Then in 2007 I started to feel very short of breath when watching TV. Just late afternoons, the kind of short of breath that makes you need to take a BIG breath to catch up. Over the coming months and years...that was the least of my problems.
Soon after this I was displaying typical hormonal (perimenopausal) issues, hair falling out, dry itchy skin, problems with my cycle, bladder problems and I developed for the first time in my life what I thought where allergies. The "allergies" got so bad I finally took myself to the Doctors in 2008. Dr ran a pull and complete allergy panel, guess what, no allergies to anything! The only red flag was an eosinophil count of 870. Dr said "well you are allergic to something, we just don't know what" End of consultation, a pat on the head and out the door.
It was here I took this into my own hands.
I started researching this high Eosinophil thing. Surprise surprise... Autoimmune problems. ( My Mother has Lupus and a Sister with Fibro) I switched Doctors hoping to get one that may run further tests.
After much searching I finally found a wonderful PCP who hearing my family history of AI problems agreed that I needed bloodwork. All the tests run and again all that came back was the eosinophils at a high. Meanwhile none of my symptoms have gone away.
In december of 2008 I had horrific back pain that came on all of a sudden sending me running to the Doctor again, the pain was terrible, hot searing and electrical. Dr sent me off immediately for a spine xray, which of course came back normal but with mild arthritis. Sent off with vicodin and endured this for a further 2 weeks till Dr suggested a Gyno as she suspected fibroids or cysts. ...this is a big post sorry guys!
Okay...so. An appointment is made with a Gyn, had to wait 4 weeks to get to see him. My back pain continues. Once I get to see him finally I explain about my back and after examination he tells me I indead do have fibroids and ovarian cysts and orders sonograms. These results confirm and we discuss a hysterectomy along with a bladder proceedure to alieviate that problem all at once. The 1st surgery is sheduled, the bladder proceedure went off with out a hitch, a 15 minute proceedure not requiring chest xrays. I recover well from that and my back pain is better.
The hysterectomy is sheduled for  6 weeks later. Soon after scheduling a new pain appeared, MUCH MUCH worse than the back pain the same KIND of pain but in my left rib cage. This pain kept me up night after night until again I ran to the PCP. This time she thinks shingles only I have no blisters, or maybe a broken rib after all I had been coughing my kidneys up since having a seasonal cold 3 months prior. Off for another xray this. Results, no broken ribs but major inflamation in both lungs. PCP is clueless suspects a mild pneumonia and sends me home with more vicodin. 2 nights later the pain was soo bad that I thought I would surely die. Back to the PCP who then decided to send me for a CT scan. As I am now getting close to Hysterectomy date a copy of my chest xray and CT scan where sent to the Gyn as pre surgery requirements also.
The ct scan results of course came back with a whole LIST of things that could be wrong, PCP decides it is indeed a pneumonia and that s that.
Now the Gyn has a copy of all this, I get a call from his assistant 48 hours prior to surgery that because of my xray and ct scan results my surgery has been cancelled pending a Pulmonologist clearance. AHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!
The drama continues. I can go on and on ( I already have) but now am going to cut to the chase. Pulmonologist see's CT scan. Veto's the surgery. Sends me for Pulmonary function tests, a bucket of blood work and starts me on a course of prednisone. Blood work comes back with high ana. sed rate. crp. CT scan shows diffuse intersitial fibrosis, pulmonary function tests come back with restrictive pattern, Pulmonologist agrees that this is definately an AI issue given my family history and refers me onto be shared with a Rheumy. At the end of the day and months and months later, half my blood has been put in vials, I have hacked and coughed, cried and worried, I have a diagnosis and am being treated.
Pulmonary fibrosis secondary to lupus. treatment Colchicine 100mg per day, CellCept 1000mg per day, prednisone 40 mg per day, prescription prilosec, calcium and vit D. Prognosis.... So long as we can get the inflammation in check, instead of expiring in 3 to 5 I might make it 7 or so. I am 48. 2 beautiful grown children, a little granddaughter who I have only seen once (I live in the US and my entire family is in Australia) I am so darned depressed about this whole thing, I have told my parents and siblings about it but I am struggling so hard with telling my children, I have to get home to them, I think this is a face to face thing, now I am trying to get everything together for yet another international move all while trying to hold a fulltime job so as I keep my health insurance current for fear of not having medication................. My husband is dealing with this very very hard, he is so sweet to me and looks after me but i can be a real bear when I am down.
Thanks for reading everyone. cry

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 9/29/2010 4:45 PM (GMT -6)   
WOW, all I can say is you have been through the ringer. You need to prepare your children for what is to come you need to make it clear you are ill. Very ill. I am sorry but an international move at this point sounds like a bad idea health wise, you will lose your health insurance and be without meds when you move while you look for another job. A job that you really shouldn't be working from the sounds of things. By the sound of things you should be on disability and taking better care of yourself. I know we do what we have to do and being with your children is emotionally important I am just worried about what such a move would do to your health and health care situation. Your children will not thank you for putting off telling them about this just an FYI, they will resent all the time they could have had had they only known.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Vicodine when things get too bad, prednisone again, various vitamin/mineral supplements, cozar, duragesic patches
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence

New Member

Date Joined Sep 2010
Total Posts : 8
   Posted 9/30/2010 9:19 AM (GMT -6)   
Thanks for your words, I know it is going to be hard... I am not concerned with the healthcare side of it all, Australia has social medicine and for me that is immediate and a God send. There are perks to being an Aussie. Moving internationally is very stressful but I have done it twice before and am quite the expert... I just want to be able to time it while I still feel relatively well like right now (thank you drugs) my MAIN problem at the moment is feeling low. I just cannot wrap my head around what it is I did to deserve this. I hate pity parties and refuse to let anyone feel sorry for me within my circle but it seems i do have a little party occasionally.
My Son is coming to visit me for the holidays this year, he will be here in December, maybe I will broach the subject with him then. He is my biggest worry, loves his Mama more than any other boy I know. My Daughter is like her Mama, tough and practical, she will be sad but I think will pick up and dust off. It is just the initial " how do I tell them?" A lot of cowardice on my part I think.
Glad I chose to post here, thoughts sometimes are better out than in. yeah

Regular Member

Date Joined Apr 2009
Total Posts : 122
   Posted 9/30/2010 2:58 PM (GMT -6)   
Hey Perdiddle,
I say have as many pity parties as you want.  It sounds like you are entitled to them.  Bless your heart.  I truly believe that you need to inform your family of your condition.  We as mothers try to protect our children, I know I did when I was first diagnosed, but then I realized that I needed to let them know exactly what was going on not only in case I might have issues that needed their help but also for them to know about their family history of health conditions, especially if they are starting to have families of their own.  I know how it can be so depressing when each day you get up and you have no idea how you will feel and what the day may bring, but try and take it one day at a time and I believe that if you keep a positive attitude it truly makes a difference on the body and soul.  Glad you came aboard to the forum and please keep us posted as to how things are going with you.
Hugs and Angels,
DX - sle and carpal tunnel syndrome
RX - plaquenil, prednisone, lisiniprol, etolodac, darvocet and flexeril as needed, hormone and vitamins

New Member

Date Joined Sep 2010
Total Posts : 8
   Posted 9/30/2010 3:57 PM (GMT -6)   
Thank you ! Having a better day today, not so mad at myself! wink

Blue Wisteria
Regular Member

Date Joined Sep 2010
Total Posts : 39
   Posted 10/1/2010 3:20 AM (GMT -6)   
Boy oh Boy, you have so much on your plate, I think you need to grab a platter. I have a suggestion, I would tell your childern sooner rather than later. This way they can research it and except the idea before you get there. Maybe even set up an appt with a rheumy for you. Hang in there things have a way of working out.....

Happiness and Health, Wis
Wishing a good day for all,

Lupus, Sjogren's, Athsma, Diabeties and RA

Plaquinal, Immuran, Rituxian, Pred, Cymbalta, Singular, Theophylline, Advair, Diovan, Mobic, Prandin, Lantus and Moraphine (as needed)

New Member

Date Joined Sep 2010
Total Posts : 8
   Posted 10/1/2010 10:34 AM (GMT -6)   
Thanks Blue Wisteria,
I think the kids will understand the lupus part of it, thier Grandmother (my Mum) has suffered for years with lupus but without organ involvement so they sort of understand what that is all about. You are right, they need to be told about the lung involvement and the ramifications. My darling Sister and Mum both have the same Rhuemy in Australia, both of them have put my name in her system, she is one of the top Rheumies in Queensland, so I am set when I get back. I think I will take my Daughter and Son with me to the first appointment after I tell them.. have the Dr. answer what I can't.
Happy day to you all!
Perdiddle. :-)

Regular Member

Date Joined Sep 2010
Total Posts : 26
   Posted 10/1/2010 2:17 PM (GMT -6)   
I agree, you are entitled to it..You endured it for quite awhile. I couldnt survive for more than 2wks. After that i RAN to about 3 doctors.

And telling the kids is a good idea as well..
~The Happiest People Dont Have Everything, They Just Make The Bes Of Everything They Have~
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