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Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 3/11/2008 7:11 PM (GMT -7)   
Hi All:

I decided I should stop lurking and give you an update on whats going on in my life. First off, I have to say, I've been in a really deep depression over the death of Tash32. I can't believe she's gone and I truly miss my friend Tash. Tash and I would spend many a nights up talking. It's hard to go into chat w/o my friend here.

As for health wise, I'm not doing to good. I'm still having issues with my breathing, sweats, shortness of breath and chest pain. I've got terrible pain in my lower left back. My doctor wants me to a cardiologist again, it's been 2 1/2 years since I last saw one. She said that it's unlikely, but I could have inflammation in my heart from the lupus. We're going to have to rule out things one item at a time. Of course, knowing that Tash passed away from a heart attack. The fact that Tash and I were about the same, as far a health complaints, it worries me that I may die of a heart attack too. My MDS is really kicking my rump as far as needing sleep. I sleep most of the day and night away. I just didn't think it would be bad so quickly. However, the quicker I get sicker, the quicker I'll need to have my transplant. I'm just frustrated and depressed, I feel like giving up. I don't want to go through a bunch of tests again. Oh well, there's nothing I can do about it, so I'll quit grumbling about it.

Hope you all are doing ok and welcome to all the newcomers. Know that I keep you all lifted up in my prayers/positive energy. Wishing you all the best, please let me know how my dear friends are doing.

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


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 3/11/2008 7:15 PM (GMT -7)   
Big Hugs and with you my cardic cath scheduled next Tuesday...
Crohn's Co-moderator

We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants)
Praise in public, chew in private.
Make sure your suffering has meaning....


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 3/11/2008 7:23 PM (GMT -7)   
(((( Barb )))) please don't give up my friend. I know you have been through so much, please know that I am lifting you up in prayer. Hugs and love to you!
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's 1999, Celiac Disease (AKA: gluten sensitivity) 2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed), Magnesium Citrate and magic mouthwash (as needed for mouthsores)


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 3/11/2008 7:36 PM (GMT -7)   
(((((((((Barb)))))))))))) You have so much to offer so many people. You are a valuable person. I know how it feels to just be tired of the fight, but don't give up. My prayers are with you! Judy

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 3/12/2008 8:36 AM (GMT -7)   
Barb,

I can understand how Tash's death has left a huge hole in your life and scared you as well. It sounds like she was the one person who really understood and identified with what you're going through. And when there is so little you can do during the day to bring you comfort, now you've lost that very important friend who was there for you every day. To hear that you may also have inflammation in your heart must be devastating Barb. It's overwhelming even to me just to think about it. Your depression is normal and I hope you give yourself permission to grieve her death while remembering what a good friend you were to her and that you were there for her till the very end. Imagine if you hadn't been there for her in the hours before her death when she was so scared and desperate to reach out to you. You were a good friend to her Barb and I hope you can get a little comfort remembering that.

Are you getting any counseling? I would urge you to do so Barb because you have more on your plate than you can handle by yourself. I think that Tash would be happy knowing that you were taking care of yourself by getting some help.

Remember that we all love you Barb, and that I think about you every day. Whatever you need....I'm there for you. Thanks for letting us know what's going on.

Hang in there sweet girlfriend, and stay in touch.

Love ya,

Pat
Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, lunesta, multivitamin, calcium w vit D, fish oil, aspirin


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1548
   Posted 3/12/2008 9:20 AM (GMT -7)   
Hi Barb.  I really feel badly for you Sweetie.  You go through so much pain each and every day and now you've lost Tash too. Please remember that although I lurk too, I'm reading all your posts and I think of you daily.  I'm sending you prayers.  Love, Butterflake

Dx: SLE ('05), depression, diabetes, fibromyalgia, gerd, sleep apnea (use a CPAP), hypertension, IBS
Tx: CellCept plaquenil methotrexate prednisone prozac celebrex lisinopril actos lipitor nexeum seroquel arthritis tylenol multi vitamin C calcium/D flaxseed oil  PRN: ambien neurontin promethazine xanax
             Better living through chemistry :D    Donna
 


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 3/12/2008 10:47 AM (GMT -7)   

Hi sweetie, (((((((Barb)))))), Loosing a friend and loved one is very difficult. Especially when it's unexpected. There is no reason to apologize for venting. If you just stay in the back ground and keep it all inside you will never be able to cope with this.

When you realize also that you and she have very simalair problems it's even more frightening. It could of been you. Facing our own mortality is a very frightening thing. Even though I say I'm ready to go I still knw in the end it will be a battle.

I'm sorry in some ways to know you are getting worse but glad in other ways. At least your doctors will move forward with some help for you. All though we have talked on the phone and I know what all that means with the odds involved. I know Tash had as much to live for as you have but it wasn't to be. I'm sure she is looking at you saying you gotta go on on Barb! You gotta win this one for both of us.

As for your breathing ,sweats , shortness of breath, chest pain. I't could easily be a problem arising but it could be nothing as well. I have the same thing. Every time I cough or make my bed or do any with the least bit of effort I have sweat pouring off my face with chest pains and SOB. I do have some build up of fluid around my heart and some harding of my right side heart due to my breathing problems. But at this point they don't seem to be to worried about it.

I hope they run these tests and set your mind at ease. I'm sure after Tash that you would be even more worried. It's just so not fair to have to always fight every day to just get by.

Let us know how the test go.

you are in my thoughts and prayers

love ya

carol


God Bless
Lupus like symptoms, with pbc symptoms, stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 4x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax 1.0 x3,Singular,nitro spray, aciphex, percocet 10mg.x4. 
I will never leave you nor forsake you!
 
 
 


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 3/12/2008 12:15 PM (GMT -7)   
Hey friend,

I hope you are feeling a bit better about things today. Sorry I didn't have much time to spend in chat today. Seems like the few responsibilities I've still got manage to grow and exceed available time. You'd think without working I'd have more time.

I'm sorry, I didn't make the connection between your dr checking heart and Tash's situation when we chatted earlier today. I feel confident that you are NOT in the same situation she was -- remember she was panicking about the possibility of being taken off prednisone -- thus adding a lot of additional stress to the heart.

I totally believe you are a much calmer and pragmatic a person -- you will NOT let this stuff get to you.

I also forgot to ask if the Dr said NO to your husband's travel plans.

Talk with you soon,

Lynnwood, Co-Moderator: Lupus Forum

Dx Lupus since '00, new Dr wants to Dx Fibro instead....
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions



dumplin
New Member


Date Joined Mar 2008
Total Posts : 14
   Posted 3/12/2008 7:08 PM (GMT -7)   

Hi Barb,

I am Dumplin and new to the forum. I read your post and want to extend my thoughts and prayers to you on your condition and your friend Tash. I recently lost my brother and realize the pain that accompanies something as great as this. I believe that my brother and Tash are in a better place, totally pain free. This doesn't take the pain away from me, but helps me go on from day to day. You always have a shoulder if you need one with me. Stay strong. Regards, Dumplin


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 3/13/2008 7:06 AM (GMT -7)   
((((Barb)))),
    I know there's nothing we can say to take away the pain and devastation your going through....(((Gentle Hugs))). Please hang in there and know that you are loved by many and endless thoughts and prayers are being lifted up for you sweetie. Update us when you can.
                                    Love and Hugs, Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 3/13/2008 7:38 AM (GMT -7)   
Barb, as hard as it was, I'm glad you gave us an update. We all love you and think about you a lot. I can only imagine how hard Tash's death was for you. It was hard for me and I didn't know her very well. I know how close you were to her and how similar your health problems were, so I imagine it was all pretty devastating to you.

You are such a sweet and loving person and I wish so much that you weren't in such physical and emotional pain. You are always in my prayers.

Lots of love,
hippi
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; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



python
Regular Member


Date Joined Apr 2003
Total Posts : 104
   Posted 3/13/2008 10:01 AM (GMT -7)   
   ((((((Barb))))))
 I can't claim to know half of what  you are going through, but I do want you to know I am praying for you. Whatever you do, please don't give up. You have been a rock for me and alot of newbies, and I don't know what I would have done without your advice and well wishes. So many lean on you, now lean on us. We love you Barb, and we need you. I hope your problems are easily treated and your pain is eased.
  Prayers and Love,
  Donna
SLE, Lupoid arthritis, Mixed Connective Tissue Disease, Scleraderma, Polymyocitis, Reynaud's, Hypo-Thyroidism, Pericardial Effusion, Irregular heartbeat
 
Prednisone, Procardia XL, Methotrexate, Reglan, Lasix, Nexium, Potassium, Folic Acid, Synthroid, Cellcept, Toprol, 81mg Aspirin, Vitamin D, Vitamin C, Multivitamin, Extra Strength Tylenol, Vicodin.


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 3/13/2008 8:44 PM (GMT -7)   
(((((((((( Barbara )))))))

Thanks for the update sis . . . it is good to share the good and the bad. You sound so miserable and I know you have endured a lot.

Hugs, prayers and some hot tea for you sis.

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, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 3/14/2008 2:18 PM (GMT -7)   
Hi Navy, Stacie, Judy, Pat, Butterflake, Carol, Lynn, Dumplin, Babs, Hippi, Donna, Rosie:

Thanks all of you for your kind words and support. I have to say the past few days have been really hard. I've not felt well at all. I've been lightheaded, nauseated, having sweats, shakes, and some vomiting. I'm not sure whats going on with me. I'll go to the ER if I need to over the weekend, otherwise I'll contact me Doctor on Monday. Hopefully, I'll be feeling much better. Next weekend we need to travel 12 hours away from our house to go to a family get together for Easter and my father-inlaws birthday. I have to say I hate the thought of traveling that far when I'm feeling this sick and yet I know they don't get it that I'm so sick and think I'm milking it out to get attention. Just don't know what to do about them.

Anyway, thanks for the support and uplifting. I appreciate you all and I thank you for listening to me when I grip.

Hugs,
Barbara
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 3/14/2008 3:37 PM (GMT -7)   

(((Barb))),

   Do your doctors check your sugar often? With the symptoms you mentioned the first thing that popped in my mind was Diabetes or low blood sugar. I know you don't need another disease, so hopefully its something simple causing the odd symptoms.

   I know your dreading the trip to the in-laws...Bless your heart!! I hope the trip won't be too bad on you and they treat you right for a change. Update us when you can and take care. You are in my thoughts and prayers.

                                        Love you, Babs


 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 3/15/2008 12:23 AM (GMT -7)   
Barb, It doesn't matter what they think. Sweetie, stay at home and take care of yourself! I was supposed to leave for Denver today with my daughter, her boyfriend, and her grandmother, all of whom I adore, to visit my son and his wife and my brother and his wife. I told them two days ago that I wasn't going to make the trip because I wasn't feeling well. No questions, no explanation. I know if I go I'll get worse, and you know that too. Is there no way you can stay at home by youself? I so want you to rest and feel better and I don't mean to be bossy. I just get mad when people don't understand what you're going through which is ten times worse than what I'm going through. End of rant.

I'm so sorry you're sick and I'll be praying for you.

(((((hugs)))))

Pat
Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, lunesta, multivitamin, calcium w vit D, fish oil, aspirin


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 3/15/2008 6:56 PM (GMT -7)   

Barb, i'm with Patty, you just have to say NO!. I realize that it's hard to not be able to do all the things that you used to do but you'll end up in the hospital again if you don't be careful. You don't need that. Your immediate family is the only one that really matters and i know your husband has seen how sick you are and he will understand. If we could only snap our fingers and choose when we will be sick life would be great. Unfortunately it doesn't work that way. If you feel up to it than by all means go but if you don't just say No!

love ya

carol


God Bless
Lupus like symptoms, with pbc symptoms, stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 4x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax 1.0 x3,Singular,nitro spray, aciphex, percocet 10mg.x4. 
I will never leave you nor forsake you!
 
 
 

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