Barbara Lee, how are you doing?

PattyLatty

Veteran Member

Joined : Mar 2006

Posts : 2608

Posted 4/17/2008 7:04 AM (GMT -7)

Barb, how are you doing these days? It's been a while since I've heard from you or about you. I hope you're doing a little bit better and are able to enjoy the pretty Spring weather. I've been thinking about you.

Love,

Pat

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

Barbara Lee

Veteran Member

Joined : Sep 2003

Posts : 2889

Posted 4/17/2008 7:12 AM (GMT -7)

Hi Pat:

I've not been on to much here, I'm not feeling the best. I'm having troubles with shortness of breath, chest pains, and sweats with chills. I've seen my cardiologist and the special heart CT they did was normal. I had a heart cath done 3 years ago and it showed I had elevated pressure in my arteries. She wants me to see the pulmonary doctor and see if they want to treat me for pulmonary hypertension. If that's what the pulmonary doctor wants to do, then the cardiologist wants to do another heart catherization. Of course with my MDS is complicates things. The soonest appt I could get with the pulmonary doctor was the 22nd of May. So I wait with the SOB, chest pain, sweats with chills, and over all feeling miserable.

Thanks for checking on me though. I saw you post that you're feeling much better, I'm so happy to hear this. I miss you and I'm going to go pop into the chat room and see if you want to join me. If not I'll catch ya some other time.

Love,
Barb

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

AlwaysRosie

Veteran Member

Joined : Jan 2005

Posts : 8616

Posted 4/17/2008 9:54 AM (GMT -7)

((((((((((Barbara))))))))) Hear you are worrying over the rest of us and you are in a big mess yourself!! Darned it all . . . how can these docs make you wait so long for something so important. I guess they figure you'll go the ER if its bad enough . . . but honestly you could drop dead waiting. Sorry . . . just had to vent on your behalf. I hope you'll keep us posted 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, Inflammatory Arthritis, Crohns, Diverticulosis, Sjogrens Clickable Links: Lupus Resources Lupous.Org Lupus Criteria (4 of 11) Lupus Chapter Locator

hippimom2

Veteran Member

Joined : Jul 2005

Posts : 5403

Posted 4/18/2008 2:28 PM (GMT -7)

Barb, I've been wondering how you have been doing, so thanks for giving us an update. It's too bad you have to wait so long to see the pulm doc - you would think they would try to see you sooner with all you have going on. You are always on my thoughts and prayers. Love and hugs, 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: https://www.healingwell.com/donate/ Co-Moderator: Lupus and CFS Forums

cured4real?

Veteran Member

Joined : Dec 2005

Posts : 1950

Posted 4/18/2008 8:08 PM (GMT -7)

Barb--

Haven't been on much but wondered how you are doing and think about you often and pray for you. I hope that you can get your bone marrow transplant and that it helps. I so want you to be doing better. Love, Marji

Love, Marji

_{--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"}

_{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, GI nightmare}

_{Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn}

mom46

Veteran Member

Joined : Dec 2004

Posts : 8198

Posted 4/21/2008 11:43 AM (GMT -7)

Barb,

I have been worried about you sweetie! I hope you went to the ER this morning to get checked out with the high fever and feeling so poorly. Hope to hear something from you soon. You are in my thoughts and prayers, my friend!

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.

MMMNAVY

Veteran Member

Joined : Jul 2006

Posts : 6927

Posted 4/21/2008 1:21 PM (GMT -7)

((((((((((((((((Barb)))))))))))))))))))))

^{Forum 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....}

_{All suggestions/options/opinions are caveated with please consult with your local health care provider...}

PattyLatty

Veteran Member

Joined : Mar 2006

Posts : 2608

Posted 4/22/2008 12:13 AM (GMT 0)

What's this about a high fever? What can you tell me Babs?

Barbara Lee

Veteran Member

Joined : Sep 2003

Posts : 2889

Posted 4/21/2008 6:06 PM (GMT -7)

Hi Babs and Patty:

I sent my PCM an email and she ordered a CT of my belly and since I was having one of my chest today it worked out. My temp is down to just 100.5. By the time they managed to get an IV in me the clinic was closed and I don't know what the results are. I'm assuming I'll here from her tomorrow.

I think I still have diverticulitis and need IV antibiotics. Of course, my doctors are dead set against admitting me to the hospital, unless they feel they have no choice. The fact I had a high temp yesterday and that it's down today doesn't seem to worry her to bad.

I'll pass on news as I find it out. Thanks for caring and asking about me. I hope your eyes are feeling better Babs, and Patty I'm hoping you're still feeling pretty good.

Love,
Barb

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

Lynnwood

Veteran Member

Joined : May 2005

Posts : 7782

Posted 4/21/2008 7:13 PM (GMT -7)

Thanks for keeping us "posted" on your status. Take care of yourself, Lynnwood, Co-Moderator: Lupus Forum SLE (’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1 Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept , Xanax , Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex Links: DIAGNOSING LUPUS (4 of 11) , LUPUS INFORMATION , LUPUS RESOURCES , Donate to HealingWell , Drug Interactions

mom46

Veteran Member

Joined : Dec 2004

Posts : 8198

Posted 4/21/2008 8:30 PM (GMT -7)

((((Barb)))),

Tks for updating us. I'm glad your temp is down some. I hope it goes down even more tonight. Take care sweetie and hope to chat with you tomorrow. Sleep well. You are in my thoughts and prayers.

Love, 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.

AlwaysRosie

Veteran Member

Joined : Jan 2005

Posts : 8616

Posted 4/22/2008 1:14 AM (GMT -7)

((((((((( Barb ))))))))) Hang in there!! I think you need a little quote in your signature . . . "When it rains it pours . . . " You've just had years of one thing after another. I'll keep you in my prayers 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, Inflammatory Arthritis, Crohns, Diverticulosis, Sjogrens Clickable Links: Lupus Resources Lupous.Org Lupus Criteria (4 of 11) Lupus Chapter Locator

Barbara Lee

Veteran Member

Joined : Sep 2003

Posts : 2889

Posted 4/22/2008 9:06 AM (GMT -7)

Hi All:

I've been sitting here and after reading your posts, I've got crossed feelings. I appreciate all your care and support, but I have to say I feel a bit hurt. Rosie you mentioned I should add "when it rains it pours" to my signature and have commented about me being sick for years. I have to say I'm feeling hurt, I feel like I can't share my illness and feelings anymore. I had someone in chat say to me that the were "sick of me being sick all the time". I don't know maybe I'm being to touchy here, but the fact is, I've got MDS and it will continue to worsen until it's full blown leukemia or severe MDS.

I can't help that I'm sick all the time. I have no immune system at all, so I'm open to every bug that I'm exposed to. I live in constant pain from the lupus and the RA. The MDS has zapped any energy that I had left from the lupus. I have say I'm sad, I miss my old life and I sorry if I'm bugging you all with my stuff. I try to be supportive to the others here and try to show that I understand what you all are going through. Guess the best thing to do is not discuss how I'm feeling and just support you all.

I truly didn't mean to take so much from you all. I'm sorry that I've gone on about things. I'll shut up about myself and just offer support to you all. I feel so guilty I didn't mean to make you feel sick of me, I'm truly sorry. I hope you all have a good day and have many good days ahead.

Take care,
Barbara

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

PattyLatty

Veteran Member

Joined : Mar 2006

Posts : 2608

Posted 4/22/2008 9:20 AM (GMT -7)

Oh Barb, honey, I'm so sorry you feel that way. I know how sick you are and I also know that you're sick of being sick, but I'll never get tired of hearing about your health problems and I suspect everyone here feels the same way. I hope that whoever told you that they were sick of you being sick all the time mean't that they wished you would get better! I know that I do but I also know the reality of MDS.

Don't stop sharing your feelings and your illness please. You are loved here and it's important that you have somewhere to go when you're feeling overwhelmed and sad. And remember, this post was directed towards you because I wanted to know just how you're doing.

Hang in there sweet friend and please let us know the results of your CT. I'm glad your fever is down a bit.

Thinking of you,

Pat

Lynnwood

Veteran Member

Joined : May 2005

Posts : 7782

Posted 4/22/2008 11:53 AM (GMT -7)

Always remember that your real friends are here to support you -- however awkward and clumsy we may sometimes be about it. Posting and chatting loose a lot of emotion that is carried in our tone of voice, hugs, facial expression, body posture, etc. Yes, we are tired of you being ill -- but that doesn't mean tired of supporting you or listening to you!!! We are tired of feeling so absolutely helpless and unable to do real, tangible things to help you. As far as I know, we don't yet do laying on of hands, can't take you places, cook you nutritious food, give you a hug, bring you books & movies, do your laundry, etc...all those things that we wish we could do and that we know would help! We know you are very very sick, frustrated, angry, exhausted, mostly housebound, and everything that means. We love you and wish we could take all that away. Oh, how we wish that we could keep all the "extra" symptoms that keep popping up safely tucked away in a dark dark corner in the back of a broom closet in the basement of a building in deepest coldest Antarctica! Until then, we'll try to listen better, Lynnwood, Co-Moderator: Lupus Forum SLE (’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1 Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept , Xanax , Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex Links: DIAGNOSING LUPUS (4 of 11) , LUPUS INFORMATION , LUPUS RESOURCES , Donate to HealingWell , Drug Interactions

jrlm

Regular Member

Joined : Apr 2008

Posts : 45

Posted 4/22/2008 1:22 PM (GMT -7)

barbara lee, I am 100% here for you, and I can see that many many people here are too. I hope you don't take the comments that people have made to heart. You are a strong strong person, and its not fair you have to put up with so much pain.
i truly hope you feel better!!!

mom46

Veteran Member

Joined : Dec 2004

Posts : 8198

Posted 4/22/2008 4:35 PM (GMT -7)

((((Barb)))),

I'm sorry to hear that was said to you in chat sweetie! We are here for you anytime you need us. Please don't let one persons comments make you feel you can't come here for support. You are always very supportive of others and we want to help you in anyway we can.

Barb, I know you are tired and weary and thats normal with your situation...(((hugs))). You have alot on your plate and you need all the support you can get. You vent, cry, scream or whatever you need to do, anytime!

You are in my thoughts and prayers, my friend.

Lots of love, 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.

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