Sooooooooo frustrated

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Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 1/23/2010 8:08 PM (GMT -7)   
Evening all:

I hope you are all doing well and having some fun tonight. I'm currently sitting in my bed, listening to music munching on Wint O Green life savers and trying to figure out what I want to say. I've had a tough week to say the least. I had doctors appointments on Wednesday and they didn't go to well.

My internal med doc whom I love dearly will be staying on at the Navy hospital for another two years so that's huge relief to me. Unfortunately, I made her upset with me and I'll probably have to take cookies and a card to get back in her good graces. She took me by surprise on my pain medications and it kinda upset me, then she went on to tell me that they've done all they can do for me and this is as good as my life will be. Of course, I started to cry and blubber, I told her I wanted a stem cell transplant and her response was I think it's gonna kill you. I responded I didn't care that my quality of life is crap. Right after seeing her we both walked over to my Rheumys office and she was present through the appointment. Heck, she even talked with the rheumy prior to me talking to him.

He came into the room and said they exact thing, we've done all we can. He had planned on giving me Rituxan in February but has changed his mind. I started Arava this morning along with my methotrexate, plauqenil, and medrol. He said he'd contact the rheumy at NIH and see if I can quality for a research study or even possibly a stem cell transplant. He gave me a shot in my thumb and sent me on my way. Now I should have been happy with that, but I was so upset I just don't know why. I went to get my meds and I couldn't get them they said the doctor didn't put them in the system. So I went back to my internist office blubbering like a fool and said give her a message I'll just stop all my medications. Once I got home I emailed her and said the same thing, when she called me back I got a butt chewing and she said I backed her against a wall and that I was threatening suicide and did I need in the the mental ward. Well I don't need that; it's just darn hard to hear your doctors say we've tried all and this is as good as it's gonna be. I'm weary and sick of being so darn sick.

They don't want to give me anything that will affect my bone marrow because of the blood cancer I've got. I just don't know what to do, my labs are now into the normal range for the lupus and RA. My sed rate and CRP are still elevated but not through the roof. I just can't handle anymore I've got this stupid lupus/RA/Fibro/blood cancer, it's just to darn much for me. Plus my daughter is being a typical snotty teenager and she's constantly hurting my feelings every time I turn around. Hubby tries to help with my emotional stuff but it's useless he just doesn't get it all. Can I just yell and scream, what am I gonna do? My life is terrible the way it is. Honestly, I don't know how much longer I can fight this battle. I could use some prayers, positive thoughts, whatever you believe in please lift me up and pass to me some good energy so that I can continue to battle these stupid diseases. I feel like I take more than I give here but I lurk and read posts most days, I'm aware whats going on with you all. I know some of you are sicker than me and I wish I could do more for you. I try to offer up encouragement when I'm not down at the bottom of the pit that lives below me at all time.

Know that I'm praying for you all and I sure wish they'd come up with a cure and quickly. Have a good night and I'll keep you posted.

Love and hugs,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 1/24/2010 7:50 AM (GMT -7)   
Barb, You've been so sick and so down for so long and this news must have devastated you. If I were there I'd be fighting to find you a "good" therapist so you'd at least feel someone was on your side. You need someone to talk to who will understand what's happening with you and who'll give you the emotional support and tools you need to deal with all of this.

And girl, quit worrying about the rest of us! I worry that you guilt keeps you away from here. We all give as much as we can and that's all that can be expected of us. Hang in there and know that I'm praying for you.

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

plaquenil, neurontin, synthroid, triamterene, actonel, niaspan, lyrica, tri-est, cymbalta,


nolatoco
Regular Member


Date Joined Jun 2009
Total Posts : 66
   Posted 1/24/2010 8:50 AM (GMT -7)   
Barb,

I agree with Patty. You need support and love wherever you can find it right now. Talking about it on here is necessary for you. Maybe some therapy would be good, too. I think talking about it would ease some of your stress, and we all know that stress can make things a whole lot worse for us (something I need to learn as well).

I'm really hoping and praying for some good days to come your way soon! Until then, keep your chin up.
Diagnoses- UCTD 2009, ovarian cysts 2008, asthma 2001
Daily Meds- Plaquenil, Prednisone, Vitamin D, Wellbutrin, Glucosamine Chondroitin 


momofltlbrat
Regular Member


Date Joined Apr 2007
Total Posts : 164
   Posted 1/24/2010 9:07 AM (GMT -7)   
Barb,
Teenagers are all about themselves. I have had to learn this the hard way. I don't pretend that I know it all about them. I am still learning. When my oldest turned 18, the very day of her birthday, she moved out. She has a job that she works 9 hours a week, she hopefully graduates in May of this year. Now as moms, we all know, this isn't going to work. She doesn't have a permanent apartment. She has been couch surfing from one place to another. Talk about stress on me. But the stress I had when she was here, was worse if you can believe that. I can understand the pain that teenagers cause. Try very hard to remember that it isn't about you, it is all about them.

Now, as for your pain, and the docs, they try, if they aren't suffering what we have, they really can't understand either. Post to those of us who get it. We can listen. If the docs will give a different med a try or a different treatment a try I say if your willing, go for it.

If you don't want to, can't afford to, or can't find a good therapist ------ find a good journal. It can be as simple as loose leaf paper. Write out your thoughts. Then they can be gone. If you really want them gone, gone, shred them.

Hope this helps in some way.
Hugs,
Debbie

FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 1/24/2010 9:51 AM (GMT -7)   
((((Barb)))))

Just wanted to know that I am saying extra prayers that you are feeling better, soon. One thing I have noticed in this roller coaster ride we call life is how quickly things can go from hopeless to good - sometimes even great! So hang in there, one day at a time and vent everyday on this board!
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept, Bactrim
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 1/24/2010 5:04 PM (GMT -7)   
*gentle hugs* I am sorry you were given such horrid news. I am also sorry your daughter is being a typical teenager. I think you need to find someone to talk to on a regular basis. I know it seems odd to suggest pouring all this into a stranger's lap but maybe it would help. Know I am always willing to lend a shoulder and to listen. I just wish I could do more.
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, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"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


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 1/25/2010 1:38 PM (GMT -7)   
Please know that I will be lifting you up to Jesus in prayers. He understands when nobody else does! I'm with Fran. Things can surely go from really bad to really good real quick! I'm living proof! Hang in there! God Bless ya! Judy

Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 1/26/2010 6:40 PM (GMT -7)   
Know that no matter who isn't in your corner, I'm rooting for you, and I'm on your side. I know you feel bad not supporting others, but you are a true inspiration. I don't have words to express how much I hope they figure something out for you. You're such a special lady, and deserve more help than you're getting. I'll keep you in my prayers.

((((BIG GENTLE HUGS))))) to you, and I pray that you have better days again!
Becky

31 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D, sublingual B12, Coumadin


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 1/26/2010 7:38 PM (GMT -7)   
Barbara, you are so crazy to say you don't support us!! You may not post often, but your daily presence in chat helps us all in a more immediate one-on-one way.

You are so very often in my thoughts, and I am so grateful to this group and the support I've gotten from it over the years - I hope somehow our support for you can jump off of these pages and warm your heart.

Always,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 1/27/2010 5:25 AM (GMT -7)   
Amen to Lynnwood!!! I am praying for you sweetie. How are you doing so far this week?

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1547
   Posted 1/27/2010 6:31 AM (GMT -7)   
((((Barb)))) Bless your heart. Like Lynnwood says, it's a comfort knowing you're here at HW. I don't know if you take psych meds, but from my personal experience when I start to cry and blubbler it's time for a med change. I also see a therapist now. She's my 3rd and she's a great help to me.  So you may want to consider therapy too. If you don't like shrink therapy, please know that I'm praying for you. I also now have positive energy to share and I'm sending lots to you along with a hot cup of tea. I love you Barb. Donna 
Systemic Lupus ('05), depression, fibro, sjogrens, cns issues, diabetes, gerd, hypertension, colitis, stage 1 kidney disease  Rx: Cellcept, plaquenil, prednisone, celebrex, prozac, wellbutrin, klonopin, neurontin, ambien, lisionpril, actos, nexeum, simvastin, lomotil, cholestryramine, claritin, nasonex,  PRN: tylenol arthritis, flexeril, phenegren, vitamins, Acupuncture.  Donna 


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 2/1/2010 11:49 AM (GMT -7)   
Hi Donna, Amy, Lynn, Becky, Judy, Redrose, Fran, Debbie, Nolatoco, and Pat:

Thanks ya'll for you support it sure helps to know that I've got you on my side. It's helpful to know that you understand and are there for me. I'm sorry it's taken awhile to respond I had a very hard week. I just feel so darn bad ALL the freaking time. My Rheumy contacted the Rheumy department at the National Institute of Health and they said they would be happy to see me. That right now there were no research studies going on that I could join but they would see me. My doctors feel that once I get into the clinic they'll get to know me and maybe they'll use me in a research study or a stem cell study. I know I'm gonna be taking a HUGE risk with the stem cell transplant if I can get one, but I feel it's my only choice to do.

My labs currently are negative but I still fell so bad. Of course I guess there's the possibility that it's my cancer that's making me feel so terrible. I was devastated to hear that this is a good as it's gonna be. My muscles are wasting away and I'm terribly weak. I'm scared I'm gonna in up in a wheelchair forever. I'm so mad at everything this isn't fair I don't deserve this crap. I can't help but wonder what I did wrong to end up in this condition.

I've got major family issues going on and the stress is just eating me up and I just don't know what to do. I was seeing a therapist for awhile but he left and I've not looked for another one. Most of the therapist in this area don't accept both medicare and tricare. Both insurances pay only a portion of the bill. I'm not a believer in antidepressants, I've struggled with really bad depression and after many different medication I didn't feel any better. My best way to cope with depression is therapy. Guess I'll see if I can find someone that I can talk to on a regular basis. Hoping that I have the energy and the strength to get there.

I just want to say thank you so much for being there for me. I can't express how much it means to mean and I hope that I provide some help to you all. I hope you all are having a good day and a pain free one at that. I'll talk to you again soon, thanks for reading and listening.

Hugs,
Barb
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 2/1/2010 9:46 PM (GMT -7)   
(((Barb))),
I'm glad to hear you will be seen at the NIH and I hope the appointment will be soon. I will be praying that once the doctors at NIH look at your records and see your condition, they can come up with some type of treatment plan your other doctors may over-looked.

I can hear the desperation in your posts sweetie.....((Gentle Hugs))). My heart goes out to you, my friend. It breaks my heart to know that you are suffering so much physically, mentally and emotionally.

There are a lot of prayers and positive thoughts coming your way. Like the others said, things can turn around. Hang in there and keep us updated.

I love you, my friend, Babs

jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 2/3/2010 10:43 AM (GMT -7)   
((((( Barb )))))) I am praying for you and hoping things get better for you soon!!! Love ya
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid and Tramadol (as needed) and magic mouthwash ( as needed for mouth sores)


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 2/5/2010 5:14 PM (GMT -7)   
Hi Barb,
I just wanted to check on you sweetie. You have been so good to update us on Carol when you are feeling so badly.

Know that you are always in my thoughts and prayers.

Love you, Babs

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 2/7/2010 7:08 PM (GMT -7)   
Hey Barb, hope you're keeping warm in all this weather you guys are having. Thought of you a lot this week, but have been buried in chores. Soon... !
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 2/7/2010 7:17 PM (GMT -7)   
(((HUGS)))

Thinking of you!
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept, Bactrim
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.

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