I can't do this anymore

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okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 7/15/2009 2:17 PM (GMT -7)   
cry  I went for my colonoscopy this morning. There was a two hour wait but I survived that. But they did it to me again! Same as my heart cath.. They didn't knock me out. cry . They put an iv in me and didn't bother telling me they were just gonna give me some pain killer (which did nothing). I couldn't stand it. I started screaming and telling them to stop and I tried to climb off the table. the nurses literally held me down. I didn't find out til later it's because they are afraid to do anything because of my lungs. They should have at least told me.
My body just can't take any more. The only thing keeping me going right now is that was supposed to be my last major test done. If they come up with anything else that they won't knock me out for I'm just going to tell them to forget it. My body can't take anymore trauma. I'm just so tired I not even sure this is worth it anymore. cry
Bunch of medicine and I'm sick a lot!

 
 


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 7/15/2009 3:05 PM (GMT -7)   
Okie!  My Lord!  That is awful!!!  I am so sorry that happened to you!  How much can one human being take.   Judy

FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 7/15/2009 3:44 PM (GMT -7)   
(((HUGS)))

I am so sorry. You are absolutely one of the strongest people I've ever heard of. Hopefully, this was the last hurdle and things will start settling down for you.
Take care,
Fran

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


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 7/15/2009 7:16 PM (GMT -7)   

Carol - what you need is what we all get from you.....a little humor, a little encouragement, a little inspiration.....and lots of support.  You just have a special way of saying things........I think we should have you cloned!  Wait a minute - I don't think they've figured out how to clone soul and spirit yet.  Never mind.  (Think Rosanne Rosanna Danna.)

You hang in there - you made it through and it's time to rest and recoup for awhile.  You are not a quitter.  I really do admire your strength.

Hugs,

Lucy 


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; UCTD 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 7/16/2009 6:51 AM (GMT -7)   
Oh Carol, that is just awful. In fact reading your post made me nearly stop breathing. I've heard that a colonoscopy is very painful, but I was fortunate enough to have been knocked out. Bless your heart. What more can you take.

They should have prepared you for what was to come! I would think that they could have at least given you a valium or something to calm you down.

I hope you have no more tests!

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


Angel MJ
Regular Member


Date Joined May 2009
Total Posts : 36
   Posted 7/16/2009 10:16 AM (GMT -7)   
Hi Carol ****BIG HUG****
sorry the procedure was such hell & absolutely a 'little heads up' can at least let you prepare!
silver lining - it's over!

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 7/16/2009 9:51 PM (GMT -7)   
Carol, I posted a while back they did the same thing with me and my spinal injections!  I said no and they kept going. My sis is an RN and she's not into lawyers but she told me to get one. When you said "no" you revoked your consent and they are supposed to stop. With my colonoscopy it took two shots, neither one hit me but at least they tried to give me a second one. WHen I got home and got out of the car,  I fell down because it all hit. (Now they sedate me ten to twenty minutes earlier).
 
If it didn't hit later, they probably didn't have the IV in right and it went in your skin and dissolved, or you got one of the many junkie nurses that get hired now through contract firms and because they don't want to pay for the good properly qualified and non-junkie ones.
 
If you feel that you got nothing when they injected you, and you feel that something fishy happened, you can report them to the DEA, who may or may not choose to investigate.
 
It's hard n a large medical center, they can have some bad apples.  If and when I can afford it, I"m going to counseling to figure out what to do. The doc, though totally inappropriate, did a good job with the injections. And good docs are hard to come by on medicare. So what do you do?
 
I don't blame you at all. You can go to the patient affairs office, or if it is a private endoscopy center, you canswitch docs and centers certainly. If you feel the nurse took your drugs, you can tell an office manager, in a small office.
 
But the real trauma is their continuing without your consent. Both of us need to find better places or at least file a report with a state medical board. It amounts to assault and you can feel very violated.
 
I cancelled all the rest of my injections, didn't say why, just said I didn't need them. I haven't decided what to do. The lawyers I called so far won't do anything because I have no permanent injury, despite how illegal what they did was.
 
BUt again, it could have been one bad apple stealing the drugs. I would tell your pulmonologist, if he is nice, from the transplant team or whatever group, and tell them what happened and how you feel about proceeding.
 
I'm so sorry this happened to you. I cried for three days, I was so frustrated and mad. Now who will I see? It creates a lot of problems.
I will keep you in my thoughts and prayers.
 
Love, Marji
 
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


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1551
   Posted 7/17/2009 5:28 AM (GMT -7)   
(((Sweetie))) You're such a strong woman. I'm surprised u have gone this long without a complaint. I know some people who request not to be sedated for a colonoscopy and I think they're certifiably wack-a-doodle.
My first colonoscopy I didn't get enough anethesia so when I screemed they gave me more. My colonoscopy last Jan I told them I wanted to be sound asleep while they rammed that thing up my butt and all went well (except for the lupus colitis diagnosis).
Anyway, go right ahead and have a well deserved pity party. If u don't know how, I can give u pointers smilewinkgrin   I love you Carol. Many hugs! Donna
Systemic Lupus ('05), depression, fibro, sjogrens, cns issues, diabetes, gerd, hypertension, IBS, stage 1 kidney disease  Rx: Cellcept, plaquenil, prednisone, celebrex, lisionpril, actos, lipitor, nexeum, prozac, seroquel, wellbutrin, xanax, ambien, neurontin, tylenol arthritis, flexeril, nasonex, phenegren, vitamins, Acupuncture.  "Welcome to lupus, where the strange is ordinary and nothing is normal." Donna 
 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 7/17/2009 6:02 PM (GMT -7)   
Oh Carol, BAH, why do doctors do that??? mad   You have been through hell and you know what?  I don't blame you one bit for being fed up with it all.  I think that is a common feeling for us around here.  I'm sure as heck fed up with the crap I go through too. 
 
You are absolutely 100% priceless.  You are so worth the struggles.  To keep you here with us and your amazing family.  They need you, they want you, and they love you so much.  When you're feeling this low, remember how much you're loved.  Tap into that and embrace it.  Make it the reason you push on. 
 
We love you Carol.  Always praying for you,
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content.Phillipians4:11-13
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 Co-Moderator for the Lupus and Fibromyalgia forums


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 7/17/2009 7:20 PM (GMT -7)   
OH my LORD Carol, bless your heart! I could not imagine the pain you went through. I've had 2 colonoscopies and was put out both times, second time I did wake with horrible pain but nothing like you endured. You have been through so much, but everyone is right, you are a strong woman and you just keep chugging along, are you the energizer bunny???? smilewinkgrin smilewinkgrin jk Seriously, you are such an inspiration to all of us here, no matter what you are going through you ALWAYS have a kind word or encouraging words for the rest of us here. I know you are fed up and I would be too, just hang in there sis and take it one day at a time and I pray this was the last test their going to put you through.
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, Folgard OS (B12), Vitamin D-50,000 IU, Tramadol (as needed) and magic mouthwash (for mouth sores)


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 7/17/2009 9:22 PM (GMT -7)   
Thank you all, Judy, Fran, Lucy, Pat,angel,marji,Donna, Stacie,and Ginny,
Wow, You guys are great! For the past two days I could hardly talk without crying. I wish I was half as strong as you all think I am. I know for me this is a time in my life that you were not put here by accident. Taking the time to lift me up is worth more then all the gold in the world.
You have all given me things to think on and right now I reallt need that. I got a call from the transplant center yesterday. They had told me once the colonoscopy was done they would get the paperwork and labs together to send to the board to make a decision.
Well the thump you hear is the other shoe dropping. They told me they want me to come in in september. Still want me to lose 30 lbs. They have already taken me off steroids and my pain has increased. Now they say I have to stop taken my pain meds and xanax. They want to do the 3rd ct of my caroided artery for the 3 rd time in as many months. Then they said they will just have me come back in every so often until I am bad enough to send my paperwork to the board members to see if they will except me as on the transplant list.
It would be one thing if my lungs was the only problem but they don't care about the other autoimmune problems I have. I only take 15mg of hydrocodone and 1.5mg a day of xanax. I have been on anaxiety meds since I was 14 so of course while I'm waiting to get bad enough to die why not take me off of them right? cry
I had an appt today with my pcp. she is a wonderful woman and a christian woman. She even prays with her patients. So we talkedand I told herI am not sure I want to keep doing this. She said she would stand by me whatever decision I make. If I want to try to get off the meds she'll help if I chose not to she will help me stay comfortable as long as possible. I told her right now I couldn't make a decision based on anything but emotion.I just don't want to spend the next few years fighting this and suffering with this. She told me to go on a short vacation and pray about it and I would figure out what I should do. (I'm trying not to be to christian speaking here) but it's hard.
So she told me to go to Branson and have a good time. So of course I said well your the dr. Got any money? tongue . She said boy do you got the wrong dr. I need to ask the ones at the transplant center!LOL.
so anyway that is where I am. Right now I just don't want to do anymore. I just want to enjoy life without of list of body parts that need xrays,poked or scaned.
thanks again everyone
Love you
carol
Bunch of medicine and I'm sick a lot!

 
 


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 7/18/2009 11:31 AM (GMT -7)   
OH Carol! cry I am so sorry that things went to horrible for you! I can't even imagine how painful that is. As the family here said, I have to agree with them that you are so incrediably strong and you have been a huge incouragement for me. With everything that goes on , you still post funny comment and you still encourage others. I pray for you everyday and I pray that I have your strength and courage. Please keep us updated and remember we all love you!

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...

 


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 7/18/2009 8:10 PM (GMT -7)   
That's brutal, Carol. I have been on klonopin for many years and I'm afraid to quit without going into rehab or having another drug. I know your feeling. If they don't think you are ready yet and haven't made a decsion, I don't understand why you have to quit it all, esp. the xanax. I can see maybe the hydrocodone. I wonder if they would let you take klonopin, another benzo that is similar. Many people with epilepsy take klonopin, as well as valium and xanax. I can't believe they would expect them to quit.

I don't blame you for taking time to think. You might see ifyour nice doc would maybe talk with the transplant team to see what is really essential.

I know with livers, they want you to be off drugs for six months to be listed and you can only take certain prescribed drugs while on the list. I think they want you addiction free.

Maybe the transplant doc can suggest substitute drugs that would meet their criteria.

I can't imagine giving up the xanax in your situation. YOu would have to be a titanium magnolia to do that.

I would get your doc to get more info from the transplant team and have her pleadyour case. There may be a third route you can go. And if they expect you to give up your drugs, they should give you alternatives.

Well, have fun in Branson and try to forget about it all. I hope the trauma from the colon thing doesn't bother you, it is very traumatic when you are treated that way and I am mad and sad and just plain furious about that kind of thing.

Remember I'm praying for you. I'm sure you'll come to the right solution. I think your doctor should be able to help.
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


SadSickTired
Regular Member


Date Joined May 2009
Total Posts : 99
   Posted 7/18/2009 10:34 PM (GMT -7)   
Carol ((((HUGS))))-
You have given me such hope and great advice since I found this place! So now I have a few things to say (as I always do):

1. If you are a Christian (or follow any other religion) believe and never worry about talking "too" Christian. You believe- life takes so much away hang on to your faith.
2. Don't ever give up fighting. I had a friend who was diagnosed with cancer and had gone through 3 rounds of chemo back to back and she hadn't beat it. She was feeling about as bad as one person can feel and said that if the last one didn't give her results she was not going on with it. But we all convinced her to try one more time. Yep you guessed it- she has a healthy new crop of hair growing in as we speak.
3. Get a lawyer and an advocate that can fight for your rights when you feel like giving up or when the people that are supposed to take care of us don't. You'd be suprised what a legal bully can get accomplished for those of us with too many manners.
You are worth so much to so many- most of us you have never even "met". Stay strong and visit often. We love you.
Thanks!
Trish
 
 


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 7/20/2009 7:16 AM (GMT -7)   
Carol,

You don't know me, Iam new here but I feel I know you. I have been reading these posts
for a long time. You are one of the bravest, strongest, women ever. You are a great
example of strength and courage. You have inpsired me on tough days, Your sense of
humor cheers me up on bad days. Keep strong. There are a lots of people pulling for you.

Robin
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