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Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 9/7/2007 8:46 PM (GMT -6)   
Evening Everybody:

Sorry a vent is coming on but I can only come and talk with you all. Well I saw my internal medicine doctor today. I had to see a back up doctor instead of my normal PCM. I've had the worst day, and my body is causing issues once again.

As some of you know I was in the hospital in August and while there the doctors found I had a 2cm blood clot in my IVC. Well I had to stop my hormone replacements and start taking coumadin daily for a minimum of 6 months. Last Tuesday I fell down and scratched up my elbows. It seemed like the world tilted and my legs wouldn't hold me up. Well, today I had a follow up for the blood clot. When the nurse called my name to go back into the office, I stood up and my world tilted again and I fell in front everyone in the clinic.

The resident that I was seeing was worried that I had a bleed in the brain. Apparently, my blood could be to thin and it can cause bleeding in the brain. So I had to have a stat CT scan, which thank God, showed no bleed. He ordered a lab test to see how my PPT/INR was. He let me leave and come home. By the time I arrived home the doctor had called. My INR is 4.7, my goal range is between 2-3, so I'm to high. The fact that I'm falling, and have blood in my urine is worrisome for the doctor. He spoke with Bill and told him if I were to fall again and hit my head I could possibly bleed to death. I've got to have either Bill or Nikita hold onto me while I walk anywhere. I can't cut anything and I have to be dependent on my family for everything this weekend. When I'm like this I just hate my life, I hate having to ask Bill to walk me to the toilet everytime I need to go. My labs were out of whack besides the INR. My WBC is up but he said it could be related to the blood clot. I had a temp of 101.2 at 2:30 this afternoon. He's not sure whats happening with my body but that there's something there.

Needless to say, I'm depressed, I can't walk 300 feet w/o getting short of breath. Now my blood is to thin and ie've got to be extra careful with things that I do. I'm just so so sick of this all. Why can't I be normal, what in the heck did I do to deserve all this crap. I'm so ready to either pass on to another place, or to have my bone marrow transplant. I'm tired of feeling sick, tired, exhausted, swollen joints, rashes of my face, sores in my mouth, my labs being off, and needing blood transfusions. So I know I need to be seen on Monday in the coumadin clinic, if I don't end up in the hospital over the weekend. I had to promise the doctor that I'd go to ER if I started bleeding anywhere or have a headache or lots of blood in my stool or urine. Or if my temp gets worse, or any other symptoms. I'm sick of this I want a different body, I just want to know why I'm the way I am. I don't know if I can suck this up and just deal with it. Sorry to be such a bummer. I just know you all understand whats happening with me and how bad the depression can be. Thanks for being there for me and I appreciate you all and I'll try to follow the directions of my doctor. Hope you all have a good weekend. I'll talk with you all again soon.

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

Veteran Member

Date Joined Jul 2006
Total Posts : 831
   Posted 9/7/2007 8:56 PM (GMT -6)   
I really hope you get to feeling better.


Regular Member

Date Joined Oct 2003
Total Posts : 495
   Posted 9/7/2007 8:58 PM (GMT -6)   
Barb, I am so sorry that you are having a bad time. My heart go's out to you...try and rest

Prayers always
Enjoy what you can today and leave the rest for another day.

Forum Moderator

Date Joined May 2005
Total Posts : 6939
   Posted 9/7/2007 9:35 PM (GMT -6)   
Arg. It does sound like the day turned nasty on you. I hope you'll find the patience to hang in there and let Nikita & Bill walk with you....I can't imagine how frustrating and confining that must feel.

My thoughts & prayers are with you,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

Regular Member

Date Joined Jul 2007
Total Posts : 261
   Posted 9/8/2007 12:31 AM (GMT -6)   
Hi, Barb. I'm SO sorry you're now experiencing this on top of everything else you just came through. I don't understand why any of us have to struggle with this stupid disease and all of the health problems we are dealt. All I do know is, that from the little I've read here on this forum you are loved by many friends right here. I know your family loves you and will support you. Just try to rest and relax. I know how very hard it is to be totally dependent on someone else for everything. I'll keep you in my prayers for extra strength! Take care,
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 9/8/2007 8:50 AM (GMT -6)   
A prayer for you Barbara:

Father God, I ask that you would hold our dear sister Barbara in your loving arms. Please send your Holy Spirit to wash her with the knowledge that she is your daughter and she is special and dear to you. Father there is much that we do not understand in this world filled with good and evil. There are many here who suffer and also need this prayer. . . allow them to make this prayer their own. I know that Barbara has walked in faith, trusting you each day and each step of the way. She is weary Father, she needs the touch of your hand to give her strength to cope with the disease which has devastated her life. Give her doctors and health care workers the knowledge to treat her disease and make her well. We know that all things work together for your glory . . . . it's just that we can't always see, in this life, what purpose that serves. Give each of us the faith and the stamina to make the best of each day we are given here. We know that this world was not even kind to your Son, who was perfect in every way. Surround Barbara and each who reads this prayer with the comfort of your Holy Spirit. Allow Barbara and each of us who suffer, to see ourselves curled up in the palm of your mighty hand, resting a restorative rest. I thank your for this forum as it is a blessing to many who come here with pain and the need for understanding. I thank you mostly for the sacrifice of your most holy Son. In Jesus name . . . Amen
In His Grip!,
AlwaysRosie          "We can't control the waves, but we can learn to surf!"
Psalms 139
Co-Moderator ~ Lupus Forum
UCTD (Undifferentiated Connective Tissue Disease), Hashimoto's, Irratable Bowel, Inflammatory Arthritis
Clickable Links:   Healing Well:  Lupus Resources ~~ Lupus Foundation of America (LFA) Facts and Overview: Lupus.Org  ~~  Criterea for Diagnosing Lupus (4 of 11):  Lupus Criterea  ~~   Lupus Foundation Chapter near you  Lupus Chapter Locator

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 9/8/2007 11:13 AM (GMT -6)   
Barb, I feel so bad for you and I have no idea why you are having to endure all of this. You certainly did NOT do anything to deserve any of this. You are a wonderful and loving person who doesn't deserve to go through all of these difficult things. I am worried about how serious things have gotten for you and about how careful you have to be. You would think that with all of the medical advances that have been made, they could better figure out what is going on.

We are always here for you whenever you need us. We care about you and want to be here for you. You are very loved.

Love, hugs, and prayers
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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Co-Moderator: Lupus and CFS Forums

Regular Member

Date Joined Aug 2006
Total Posts : 334
   Posted 9/8/2007 11:48 AM (GMT -6)   
this is truly an awful time. I feel for you deeply and wish there was something we could do for you. Life isn't fair and you shouldn't have to be going through this. I hope that you remain at home this weekend and not end up in the hospital. We'll all be thinking of you and hoping and praying for your health to improve. Can I ask, are they planning a bone marrow for you soon? You are very loved and respected here, anyone can see that, and if you need to vent to us we're all here for you. Love to you x x
Chillblain Pattern LE, possible SLE, tachycardia, proctal fugax, anismus, slow transit constipation.
Prednisoloe, 35mg

Regular Member

Date Joined Mar 2007
Total Posts : 153
   Posted 9/8/2007 1:47 PM (GMT -6)   
Barbara Lee,
God Bless your precious heart. I feel so deeply for your situation. I sit and stare at the monitor, without words. There are many things I would say, but I do not want to cause trouble on the forum by speaking too much of our Faith.

Right now you can only pass time. Two years ago I had to rely on my husband for EVERYTHING. I could not get to the bathroom, could not take a bath, wash my hair, make meals, could barely feed myself because I was so weak. I HATED it. And then I would get such violent episodes of vertigo, that I could not even sit on the toilet without aid. It was a horrible time. My husband wasn't the most loving creature in the world about it all either. He did it, but I could tell it was a burden.

So while I haven't been exactly where you are at, I have some idea.

Remember that its OK to feel depressed. Its OK to feel angry. Its OK to feel guilty. Its OK to mourn for what we are not and what has been taken from us. These things are ALL normal and ok, and the only way throgh. I am so happy that you can come here to vent. Come here and scream and rage. Get mad, cry, yell, moan. We are here for you. To listen, to hold your hand, to wipe your tears, and to pray incessantly for you.

Imagine how strong you are! Eleanor Roosevelt said "You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, "I lived through this horror. I can take the next thing that comes along."

And you can. You have come through so much already.

You have strength in you, you have voice and influence. And if your anything like me, right now your saying... I DONT want to hear this crap, I just want to be well! I know.

Love and Hugs,
Chronic Fatigue 1990 * Migraines 1990 * Restless Legs 1995 * Fibromyalgia 2001 * UCTD/probable Lupus 2007* Clostridium Difficile 3/07

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 9/8/2007 9:55 PM (GMT -6)   
Hi Veronica, Frank, Lynn, Sharen, Rosie, Hippi, Lion, and Darlene:

Thanks everyone for your well wishes and prayers. I can always use as many prayers that can be said on my behalf. Today has been an alright day. I've had several episodes of feeling like my world is tilting. I hate having to be so dependent upon my hubby.

He even had to shower with me today. "Of course, he had to remind me when we showered together for fun", which in turn made me feel even worse. This stupid disease has taken so much from me. I can't act like a "normal wife", I can't do things with my teenage daughter, (you know the kind of stuff her friends Mom's would do), I can't clean my house or cook a meal.

Plus all the drugs I take have altered my appearance for good. The stretch marks, the buffalo hump on my back, the round moon face, oh and the sweating and facial hair. Needless to say I'm unhappy, I can't even sit on the toilet w/o needing someone to hold on to me. Sorry I'm venting, when I'm this limited I can't try to keep up a good spirit.

Well I just wanted to say thanks for your well wishes, and prayers. I love you all, I know that you understand the frustration I have about "needing help" all the time. I'm praying that soon I'll improve some just a bit would be nice. I know that my odds aren't in my favor to do the bone marrow transplant right now. I'm willing to take a chance on those odds, just to try to get on with my life. I really don't care that I stand a 65% chance of dying if we did it now. It doesn't make sense to me that they're gonna wait until my bone marrow is failing so bad that I'm gonna die no matter what. If my doctor could live in my body just one day, I bet he'd be willing to do the transplant now. Oh well, it's out of my hands, all I can do is hang on for the ride.

Hope you have a good rest of the weekend. I'm praying for you all and hoping that you're getting your prayers answered. See you all again soon. Love and hugs to you all.

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

Veteran Member

Date Joined Jan 2005
Total Posts : 659
   Posted 9/8/2007 10:05 PM (GMT -6)   

Hi Barbara Lee,

I am so sorry you are having such a rough time. I do know that you are a very special person and dearly loved by all. I am glad you are able to vent to us, everyone needs that outlet and we understand. Please rest the remainder of the weekend, and I hope things are a little better tomorrow.

Sending gentle hugs your way...


DX: Kidney Disease, (? Lupus Nephritis) 2002
DX: Raynaud's Phenomenon and Lupus 2005
DX: Anorexia and Hypokalemia 2006
meds: plaquenil, lasix, klor-con

Veteran Member

Date Joined Aug 2005
Total Posts : 590
   Posted 9/9/2007 9:18 AM (GMT -6)   
Hey Barbara,

I am sorry you are struggling so much both physically and mentally. I cannot imagine how rough you are feeling. I think you do well considering all you have going on.

I am sorry I disappeared in chat the other day, my internet decided to crash for a day. What timing!!! I was upset.

Barb, hang in there, you are a strong lady. We are in your corner

lots of hugs and positive thoughts for you.

sle 99 w/cns/autonomic involvement 11/05, photosensitive 04/04, sjogren's syndrome 99, ra 01, fibro 8/05, sinus tachycardia 6/04, asthma 96, allergies to artificial dyes, sulfa, penicillin, cephalosporin 06/04, idiopathic neuropathy/neuro pain 11/05. Epilepsy 3/06, prob mini-stroke 5/06, Porphyria 5/06, Vitamin D deficiency 4/07. Meds are baclofen 40 mg, prenatal tabs, potassium, calcitriol 50 mcg, qvar, xopenex, singulair, plaquenil 400 mg, tramadol 400 mg, darvecet 100 mg, percocet, sjogren's stuff

Post Edited (Leta) : 9/9/2007 1:41:50 PM (GMT-6)

Veteran Member

Date Joined Dec 2005
Total Posts : 1944
   Posted 9/9/2007 11:09 AM (GMT -6)   
I'm so sorry about the coumadin affecting you like this. Did they change the dose? What about involving, maybe, a second opinion on the treatment of the clot. Is there a reason why they didn't feel they could take care of it surgically while it was in a sort of safe area? I know you have great docs, but even they get burned out sometimes. I just wish they could have come up with something better, but I'm not a doc and you are so complicated medically. It just seems that coumadin and your current blood problem woudln't be a good mix, since you have some abnormal blood cells anyway, I think (is that right?) and then to thin it out more would leave you fewer working blood cells. When I got too much thyroid medicine my blood got real thin and I kept falling over and was real dizzy and had trouble walking, not as bad as yours, but they ran a couple bags of Iv solution through me to get out the excess medicine then lowered the dose. I just feel like sending you home with such a risk of falling. Maybe you should go to the ER if you keep feeling so bad and they don't fix it, I mean fix it. I know the last thing you want to do is p*** off your docs, but maybe a second evaluation on this if possible would be good. I just feel like they are sort of throwing up their hands, which is ridiculous, and I hope that's not the case. I just want you to be better and you don't need this added, really scary horrible debilitating problem when you are finally home. Well I will pray for you and your family through this rough time and I really think that there may be a way they can treat you better without giving you more meds other than the coumadin, at least I wish that for you. They also need to take into account that you may need a lower dose due to liver and kidney damage or other problems-- a lot of docs do not even bother to think, they just prescribe what they always give everyone and we are not all alike. And maybe one of your other meds is making it too strong, unless they want you like this, very prone to bleeding. Have you checked to see if any of your other meds is making the coumadin too strong? The pharmacy knows all that.

And on the bone marrow transplant, I know two people who had that and were terminally ill at the same time with very acute hepatitis C and probably other stuff and made it through fine and went into total remission on their cancer. Their odds weren't good either, but the docs always cover their butts, so giving you over 50/50 is good. My stepmom, who has multiple myeloma had a stem cell transplant and she is doing great, she has a portacath too but hasn't had any problems. She urges everyone to go to a place that is state of the art in cancer, to go to good cancer treatment centers-- they help, and to go to a medical center that not only knows about cancer but can really treat it and all the rest of your conditions. It sounds like you are at best they have, so that wouldn't be an issue. She said they do so many stem cell transplants it was like an assembly line, so she wasn't scared, she was amazed. Well, sending good thoughts and wishes your way and I know you can get through this because you've got to be tough as nails by now. It's like you're on the front line in a war but with your own body. I really wish you could get a break.
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

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 9/9/2007 2:31 PM (GMT -6)   
  Bless your heart sweetie! I'm glad I got a chance to chat with you today. I'm sorry your enduring one thing on top of another.
  Like Darlene said, its normal to have all the feelings and emotions your having. I'm glad you are letting them out here with us. I know its hard depending on others for normal everyday tasks like sitting up in bed, standing up, or going to the bathroom. I have been in that situation for months at a time over the years. It will wear you down mentally and emotionally....((Hugs)). I pray this doesn't last long for you.
   I guess we will never know in this life why things happen the way they do....(((Gentle Hugs))).
   I hope your appt goes well tomorrow. Hopefully, your doctor will get the coumidin regulated quickly. I know its hard but, hang in there sweetie! There's alot of positive thoughts and wonderful prayers going up for you.
   Let us know how your appt goes and let bill and nikita take care of you. Your always in my thoughts and prayers, my friend.
                           Lots of love and hugs, Babs
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
mirapex,advair,foxamax,donnatal,folic acid.
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

Veteran Member

Date Joined Jan 2007
Total Posts : 607
   Posted 9/9/2007 3:47 PM (GMT -6)   
Hi Barb
I am so sorry to hear that you are sick again. As others had said, it is normal to feel depressed and the emotions you have right now. I would be too if I were you. I hope your hard time will be over soon, and that the docs can figure out something to help.

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 9/9/2007 7:48 PM (GMT -6)   
Hey Barbara . . . I wonder if your hubby would be willing to go with you to see the doc. It may really make more of an impression on the doc when hubby talks about how weak and wobbly you are. I've read frequently that it is a great thing to try when you really need the doctor's attention. Make sure your write out your comments so you don't lose you nerve when you get there too.

Some hot tea for you!! and your rant is perfectly justified and causes me and many others to appreciate what we CAN still do.

Let us know how things go at your doctor appt.

In His Grip!,
AlwaysRosie          "We can't control the waves, but we can learn to surf!"
Psalms 139
Co-Moderator ~ Lupus Forum
UCTD (Undifferentiated Connective Tissue Disease), Hashimoto's, Irratable Bowel, Inflammatory Arthritis
Clickable Links:   Healing Well:  Lupus Resources ~~ Lupus Foundation of America (LFA) Facts and Overview: Lupus.Org  ~~  Criterea for Diagnosing Lupus (4 of 11):  Lupus Criterea  ~~   Lupus Foundation Chapter near you  Lupus Chapter Locator

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