PattyLatty Are you OK

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Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 8/28/2007 12:38 PM (GMT -7)   
Hi Patty:

I'm so sorry you're feeling bad I hope that you begin to feel somewhat better for your vacation. Know that I'm thinking of you and praying for you. Hope you can enjoy your trip. I'll miss you while you're gone. Let us know when you're back.

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


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 8/28/2007 2:22 PM (GMT -7)   

Hi ya Barb, I hope you are doing better and you are over doing it with the house.

Patty my son was just up in canada a couple of weeks ago. He lives in montana so it's not all that far. He really wanted to do some fishing too but didn't get the chance. I hope you have a wonderful time and I doubt the little fishies with be bothers by your by passing the pedicure. lol. Lazy lupie sounds just right for a vacation.

Love ya guys

carol


God Bless
Carol
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3
 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 8/28/2007 3:29 PM (GMT -7)   
Hi Carol:

I'm not feeling any better physically. I've not been over doing it, I've not been doing anything lately. I fell down this afternoon, it's like my legs wouldn't hold me up any longer. I saw my Rheumy this morning and I was told that since I've got "major issues" every time I see him, he just doesn't know what to do with me.

Apparently, my chances of starting humira are long gone. With the blood clot now, he's unwilling to add another immuno suppressant to my mix. He doesn't want to give me any higher narcotics, I can't have any anti inflammatory medications with my coumadin.

So I said to him, "basically I'm to suck it up and deal with my crappy life", he said "well I wouldn't word it like that". I told him my life was crappy and horrible and I might as well go ahead and shoot myself and get it over with. His response was to put his arm around me and ask me if I had any guns at home. I neglected to answer his question and told him, I'm fed up with this. I'm dealing with serious pain and agony and he doesn't want to "try" anything cause he doesn't want to do no harm.

So, no I'm not better. I'm struggling to breath all the time, I can barely walk to the toilet in the next room, and I flat out hate my life. I'm just to suck it up and wait for my MDS to take my life. How wonderful our medical technology is.

I hope you are feeling better and are ready for your vacation. Enjoy yourself and let us know how your vacation goes.

Love,
Barb
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 8/28/2007 4:05 PM (GMT -7)   
(((((((Barb))))))

You're so sweet to be worried about me when you're going through absolute misery. I'm better than I was this morning and I'll be fine. It's you we're all worried about. Have you ever felt this bad before? You must be absolutely exhausted from all the pain and other medical problems you've had for so long. I didn't realize that you have trouble breathing. I'll check in as soon as I get back to see how you're doing. Keep the ol' chin up and remember that there are a bunch of folks here who really care about you, your health, and your happiness.

Carol, I hope your vacation is great and that you feel good while you're gone.

Love to you both,

Pat

P.S. Now I'm going to start packing. Finally.
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 8/28/2007 4:30 PM (GMT -7)   
Ok Barb, I can tell you I know what it's like to feel like giving up. I know what it's like to dread going to the bathroom because the chest pains hurt so bad from trying to breath that my chest heaves out so far I feel like my ribs are breaking. I know what it it feels like to lay in a sweaty bed with sweaty hair and would give anything to have clean sheats and and clean body with freshly shaved legs. I know what it feels like to cry myself to sleep because no one is around to fix me even so much as a lousey sandwhich. I know one other thing too. I know what it's like to loose someone to suicide. 11 years ago my 29 year old brother hung himself. I loved my brother with all my heart. I would give almost anything to try to except what he did. Truth is I can't He had no right. He was part of me and I was part of him. He didn't just kill himself he killed part of everyone. That was the last time my family spent any holiday together. I could have handle anything. Accident, disease,homcide even. He made a choice to not live with his pain. But what about me? He left me with a big empty space in my heart and that pain will be with me for the rest of my life. You can take what I say for what ever it's worth but knowing what I do about it I am certain that it's not the legacy you want to leave you family.
I could ask you lots of questions about the doctors and meds but I know you have done everything you can. I'm so sorry for what you are going thru but please just hang on as long as you can. Every day, every minute is special not just to you but to the people that love you.


God Bless
Carol
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3
 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 

Post Edited (okie) : 8/28/2007 5:33:21 PM (GMT-6)


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 8/28/2007 6:02 PM (GMT -7)   
Hi Carol:

I'm sorry I worried you hun. I'm sure this is a touchy subject for you, now knowing about your brother. I'm so very sorry you've had to go through this. It's just so hard for me to get my doctors to listen to me at times and I spout off at them. I'd never hurt myself intentionally, it's not fair to my 14 yr old daughter. Even though she said some really hateful things to me on Friday. But that's a different story. I can say however, it is tempting to me at times to give up fighting and let whats gonna happen naturally happen sooner. By tomorrow I'll be alright and ready to fight again. It's just days when my pain is so bad like today I'm beside myself and anything looks promising to stop the pain. I hope you can forgive me for upsetting you. I just needed to talk to someone that I can say how I truly feel. Sorry again Carol, I shouldn't have said anything. I hope you're feeling better and your trip goes well. Take care of yourself while you're away.

Patty, I hope you have a great trip and that the packing wasn't to much on you. Please let us know how your trip goes.

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


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 8/28/2007 6:16 PM (GMT -7)   

Oh Barb your post didn't upset me at all and please don't ever feel like you can't say what's on your mind. I was just using my brother as an example for why it's so important to hold on. Not to mention the fact that I love ya and I hate the thought of anything happening to you. Please Please Please you can say anything you want to. If you didn't you wouldn't be being very honest and that is one thing I count on here is honesty. I understand the let's just get it over feeling. Been there done that and will probably be there again and you will be the one telling me to hang in there. You're a very special lady and I continue to keep you in my prayers. and one more thing. Our kids can say some terrible things to us can't they? I'm waiting for the day my son grows up and stops upsetting me and he turned 27 SundayLOL.

Love ya

carol


God Bless
Carol
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3
 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 8/28/2007 7:56 PM (GMT -7)   
Hi Barb, that's a drag about the stronger pain drugs. That's ridiculous. I mean at what point do they want you to get to get more? I mean if you can handle all the suffering, you ought to be able to handle the stinking meds. When are they going to do something about the clot, besides giving you coumadin? Can they take it out and get that over with at least? I totally understand your frustration. When I got very sick from interferon becuase I was misdiagnosed and they gave me an immune "booster" when they knew I had autoimmune problems, and I just wanted to rip myself open from stem to stern. I itched to my very core, like the itching you get from restless legs or something only all through my body and I was very nutsy and sharp objects and things were hidden from me. I'm permanently screwd from that interferon. I can tell you I got through it with stadol nasal spray. Stadol is a non-addicting morphone type drug that is used for short term anesthesia and in the nasal spray format it is killer for migraines but is very very very strong, like IV morphine and after three months straight on it, I was able to toss the bottle. It gets you pretty "out of it" but mostly out of pain. Most docs don't know that there is such a thing. It might be something to ask about if you are really having some serious pain. You can use it when you want, then not when you don't need it. I got to the point where Ihad to law down the law, if they wanted me to keep on, which I wanted to do for my kids, then they had to do something to improve my quality of life, end of story. There is no excuse. There are plenty of pain things out there if they would get off their arrogant butts and get on the net and do a search, or even talk to other collieges. I just get mad at our attitude about pain relief in this country. It really irks me. But maybe ask about the stadol nasal spray. It feels like going on a rollercoaster a bit because it works instantly, the meds go right to your brain, and I was pretty messed up but definitely in a better mood! I sure hope they get you past this clot stuff soon, like how much do they want to pile up on you? I was glad to hear from you and I hope you feel better and get something to help you through, and know that you are in my thoughts and prayers.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments

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