grrr at doc appt

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SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 6/24/2009 5:23 PM (GMT -7)   
Told you i had a doc appt last week. Well today was the day. I found out that the tumor is non curable, the purple strea is non curable. and all they can do is "make me comfortable". I'm really upset, I just want my life go back to normal. I'm tired of being sick all the time. I'm tired of people asking me why I am wearing an eye patch. I'm tired of it all.
 
Smurfy Shadow/Desirèe 
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Depression, Asthma, Asperger's Syndrome, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux, Tumor Behind the Eye, Carpal Tunnel, Fibromyolgia, Clasterphobic, Arthritis
Medications:  Tri Nessa, Percocet, Metformin, Prilosec, Protonix, Zantac, Advair, Cingulair, Albuterol, Calcium + Vitamin D, Pro-Air, Pepcid, Rolaids, Zofran, Compuzeen, Refresh Plus Eye Drops  PRN: Epi-Pen, Albuterol Nebulizer, Benedryl
Undergoing Radiation Taking Lorazepam (Ativan) on Radiation Days


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 6/24/2009 5:38 PM (GMT -7)   
I am so sorry Desiree! I am sorry you are having to deal with all  of this! I know you must be at your wits end and wish there was something I could do to help! I know it will be hard but please keep your chin up! We are here for you whenever you need to vent or let your frustrations out. I am praying for you and sending you hugs!

Amy

 

21 years old...Systemic Lupus , lupus nephritis , raynoids , Carpal Tunnel

Ultram, Prednisone, Cell-Cept, Lisinopril,  Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

The Old Normal is no more so I and we have to find a New Normal...

 


SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 6/24/2009 5:53 PM (GMT -7)   
I am just so sick and tired of this. I cry a lot now, I miss doing things with my 5 year old like before. I'm tired of havign to wear long sleeves and hats in the sun cuz of the sun from treatment, I'm tired of the migraines and headaches, I'm tired of the vomiting and naseau, I'm tired of being an emotional wrectk, tired of people asking me whats wrong and what they can do to help, half the time I just wish it would just end. But I dont, cuz I am better than that. I'm giong to go to church now and try to feel bette and to try to stop crying LOL
 
Smurfy Shadow/Desirèe 
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Depression, Asthma, Asperger's Syndrome, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux, Tumor Behind the Eye, Carpal Tunnel, Fibromyolgia, Clasterphobic, Arthritis
Medications:  Tri Nessa, Percocet, Metformin, Prilosec, Protonix, Zantac, Advair, Cingulair, Albuterol, Calcium + Vitamin D, Pro-Air, Pepcid, Rolaids, Zofran, Compuzeen, Refresh Plus Eye Drops  PRN: Epi-Pen, Albuterol Nebulizer, Benedryl
Undergoing Radiation Taking Lorazepam (Ativan) on Radiation Days


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 6/24/2009 6:24 PM (GMT -7)   
Desiree,

I so sorry that you got such devastating news today. I'm glad for your sake plus that of your 5 year old child that you aren't going to give up. You're in my prayers.

(((((Hugs))))

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 6/25/2009 8:17 PM (GMT -7)   
OH NO!! (((((((((( Desirèe ))))))))

I'm SO sorry sis! That's incredibly difficult news. Harder yet with a wee one to think about. I'm so terribly sorry.

In one respect, I'm glad the doctor was so honest instead of giving you false hope . . . but jeepers that's got to be like getting hit in the head with a brick.

I hope you can enjoy some sunrise/sunsets or campfires with your little one. My grands have such a good time when we do any of that kind of thing. . . . we never did find a place to see a full out sunrise . . . but we've gotten up early and tried several places. I think it was more fun scouting out a spot than the actual sunrise would have been!!

Prayers, hugs and . . .

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 6/26/2009 9:58 AM (GMT -7)   
Desiree,

I'm so sorry about your news. That's truly awful. Good for you to keep fighting. You are truly a brave one for your family. Take care and sending gentle hugs.
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007, Localized Scleroderma 2009, Raynauds 2009
 
Meds: Plaquenil 400mg/day, Pred 2.5 mg/day (tapering), Methotrexate 10mg/week, Hydrocodone PRN, Flexeril PRN, Fiorinal PRN, Baby aspirin, Prenatal Multi, Vit E, B12, Fish Oil, Biotin, Calcium, Folic Acid


superloopie
New Member


Date Joined Jun 2009
Total Posts : 15
   Posted 6/28/2009 2:20 PM (GMT -7)   
I am so sorry to hear that. I will be praying for you. I had my dad watch my kids last night as I was bummed and wanted some 'us' time with my hubby. We went to the beach at sunset and just enjoyed the cool breeze long after the sun was gone. I pray you will be able to find some things to relax you. (((hugs)))

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 6/30/2009 11:15 AM (GMT -7)   
Desiree--
I know what you mean. If you were nearby, we could sit inmy comfy recliners and watch movies and play cards or something. I have thick wood blinds on my windows with curtains over them. I can no longer watch the birds at the feeder. I had a recent pet scan for lymphoma and some placeslit up and they wont even biopsy them to see if there is anything wrong. I feel like they are just letting me go. I read about all the better care and treatment other people have gotten in different areas of the country, it makes me want to move. But Ilove where I live.

I also have liver disease which is untreatable and they never know what or when I will go into liver failure. So now I swing between paranoid and scared to just not caring anymore. But I do care. I want so much for people to have the best treatment regardless of their insurance. Just because we are medicare, I feel that docs don't do anything becaue they don't get paid enough. Actually, I know its true.

I really do understand and I am praying for you. I was told I had a year to live and that was 17years ago, then they said they couldn't guarantee me more than 20 years. When I asked my GI how long I had, he said that people withmy condition just plug along sometimes for a long time. My dad is thirty years in now. I am 17 years in.

I have vitiligo that is disfiguring and embarassing. People would come up and say "you have michael jackson's disase" docs and others think I have AIDS because its common with AIDs, some people dont want me near them and I feel they don't want me to swim in their pool, thinkingI have some nasty skin fungus.
Mine is so patchy that makeup and tanners and dyes just make it look worse. So I cover it upbest I can.

I'm sure you wear shades when you can for your eyes, there are some tinted shades that don't actually impair yourvision. I don't know if these are an option.

I don't know about your tumor, what kind it is because I've been gone alot did they mention any types of treatments at all? Sometimes you have to really search and travel to find the right doc. Some docs feel its not worth putting a patiet through alot for a small chance of success but don't let the patient make the choice, other centers pride themselves on being able to treat the untreatable.

Seeing a bioidentical hormone doc helped me get rid of extra estrogen which feeds tumors and put me on a low estrogen diet after testing of course and some special hormones to help me excrete and convert the bad estrogens. They are usually very compassionate, will test things like hormone and vitamin levels that normal docs won't, and may be able to hook you up with some docs that are willing to go beyond the extra mile to help you. I hate to say this but my most discompassionate and incompetent docs have been male.

I am so so sorry this is happening and I know the feeling of being "let go" like the docs say why bother. All I can sayis that you have to go by how you feel. Fight and see new docs if need be, my GI told me I was dying, I saw two other specialists who explained what was going on with me, one put me on experimental treatment that seems to be helping and I may just stay in the state I'm in until old age or somethingelse gets me. On anything serious, especially if they say nothing can be done, I would get a second opinion from a place like Mayo or Cleveland Clinic or a University Medical Center, where theymay have additional treatments to offer.

On the days I don't feel like it, I let myself just do whatever. Sometimes I need to cry,to worry, to make plans, or to escape and forget. Sometimes I need to leave and visit relatives and let them baby me and make me forget about things.

Just know I'll always chat with you, I can talk about nothing, and talk alot if you haven't noticed.; ) I will pray for you. And don't let anyone tell you what to do regarding seeking treatment, taking a treatment or not, do what feels right for you.

Healing can come in a lot of unexpected ways. I hope that somehow there is something they can do beyond this palliative care. BTW, I have positive P-ANCA but docs haven't diagnosed me with P-ANCA vasculitis and keep checking me for Wegeners.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids

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