My heart is breaking!

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okie
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Date Joined Dec 2006
Total Posts : 2818
   Posted 7/7/2009 1:30 PM (GMT -7)   
cry  I am so angry, distraught, terrified, what ever. As you know when I was in hospital we got news our father died basically out of nowhere. That was 4 months ago.
Well about a month ago my brother that I live with started having a problem with his right eye. He went to the eye dr. they ran a scan and discovered about 1/3 of his eye was going blind. He thought it was caused from high blood pressure. but that wasn't it. They sent him to a specialist in OKC and it took 3 weeks to get in to him. In 3 weeks his right eye is 3/4's blind and now it has started to spread to his other eye. They took more test and they told him they don't have a clue. His tests came back that there is a strong autoimmune possibility and there is no reversing this effects.
Right now he is back in OKC having a spinal tap done. Trying to find anything to explain this. They are going to have him come in every day for iv steroids for 3 days and then 2 weeks worth so if there is an infection they can't find it may at least stop the progress. I would give anything to take his place. I'm used to this AI stuff. This just hit him like a lead pipe. How much is this disease going to steal? cry . My brother is a preacher. He studied in schools for years. He just got his own church a year ago and he's 46 years old. How does a blind man preach from a pulpit? I'm sorry I just had to get this out. I want to be supportive for my brother. He must feel like a train his headed right at him and he can't jump off the track.
Please pray for my brother Doug and his wife Kathleen and for me so I can be strong for them.
I'm so overwhelmed by the attacked on my family lately.(that's how it feels). I just need all of you once again.
thank you and God Bless
carol
 CAROL
 systemic scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Detrol LA,spironal,Lisinaprol,furosemide,azithromiazin,plaquanil,pottassium,Citrocal,vicodin,percocet,tons of inhalers.
 
Bear ye one another's burdens
Galatians 6:2 KJV

 
 


g*reed
New Member


Date Joined Jul 2009
Total Posts : 11
   Posted 7/7/2009 2:24 PM (GMT -7)   
Carol, i am so sorry for what you are going through (hugs). i will definitely keep you and your family in my prayers.
g*reed
28yrs. old., lupus


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 7/7/2009 3:39 PM (GMT -7)   
Goodness! I am so sorry Carol! I will lift you and your family up in prayers. Hopefully the steriods will put a stop to everything... Sending hugs your way!

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...

 


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 7/7/2009 4:01 PM (GMT -7)   
Thank you G and Amy I appreciate it. It's just all these auto immune diseases just strip away at our lives unrelentlessly and takes no prisners. I hate it for everyone. I also feel like there hasn't been enough done to help people like us. We are barely out of the stone age as far as drugs or early detection goes. Most people I meet for the first time don't even know what lupus or any of the other countless a/i's there are. Not to mention If you get a good dr. your very lucky.
 
ok I'm done
thank you again
hugs
 CAROL
 systemic scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Detrol LA,spironal,Lisinaprol,furosemide,azithromiazin,plaquanil,pottassium,Citrocal,vicodin,percocet,tons of inhalers.
 
Bear ye one another's burdens
Galatians 6:2 KJV

 
 


python
Regular Member


Date Joined Apr 2003
Total Posts : 104
   Posted 7/7/2009 4:16 PM (GMT -7)   
(((((Carol)))))
I'm so sorry for what your family is going through. I will pray for your situation to get better.
Donna
SLE, Lupoid arthritis, Mixed Connective Tissue Disease, Scleraderma, Polymyocitis, Reynaud's, Hypo-Thyroidism, Pericardial Effusion/pericarditis, Irregular heartbeat, Hiatal hernia.
 Prednisone, Procardia XL, Methotrexate, Reglan, Lasix, Nexium, Potassium, Folic Acid, Synthroid, Cellcept, Toprol, 81mg Aspirin, Vitamin D, Vitamin C, Multivitamin, Extra Strength Tylenol, Flexeril, Vicodin.


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 7/7/2009 4:34 PM (GMT -7)   
Carol,

I'm so sorry. I hardly know what to say.

Your brother has a calling and he doesn't need his eyes to preach the gospel. And losing his eyesight will increase his compassion for his flock.

That doesn't take away from the horrible loss of losing much of his sight, but he has a calling and I believe that it is that which will help him overcome this.

Bless your heart Carol. We're going to have to start calling you the Queen of Tragedy!!! It just doesn't seem to stop for you.

I hope you're ok.

Love,

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


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 7/7/2009 5:39 PM (GMT -7)   
Hi Donna and Pat, Thank you so much. Doug got home a little while ago but it will be about a week before the lab work gets back.
Oh Patty, thanks a lot lol queen of tragedy huh? Lucky me. Actually this isn't even me but my bro and it's so hard to see this happen and nothintg you can do abou it.
love ya
 CAROL
 systemic scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Detrol LA,spironal,Lisinaprol,furosemide,azithromiazin,plaquanil,pottassium,Citrocal,vicodin,percocet,tons of inhalers.
 
Bear ye one another's burdens
Galatians 6:2 KJV

 
 


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 7/7/2009 5:58 PM (GMT -7)   

So Sorry, Carol - you have every right to be infuriated and frustrated.  And tired tired tired of coping with yet another loss and challenge.  My heart goes out to you - with prayers to follow.  Somehow you are going to get through this, too.  And your brother has you to walk with him as he confronts this......Blessings to you both. 

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
 
 


FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 7/7/2009 6:21 PM (GMT -7)   
Carol, I am so sorry to read this. My prayers are with you and your family.
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.


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 7/7/2009 6:29 PM (GMT -7)   
Carol I'm so very sorry this is happening.  Doug must feel like he's in a horrible dream and that reality isn't making much sense.  Like everything around him is going in slow motion.  He'll receive tremendous support from the congregation.  Make no doubt that this is something God will use to strengthen him and your whole family. He has you for support too.  You understand what it's like to live with the sudden life changes that AI diseases bring.  Lean on each other.  I'll keep you in my prayers too.
 
Blessings,
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 7/7/2009 7:31 PM (GMT -7)   
((((( Carol ))))) I too am so sorry to hear about your brother. You, Doug and Kathleen will be in my prayers. Please keep us updated on how he is doing.
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)


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 7/7/2009 7:46 PM (GMT -7)   
Okie,
Wow! I actually know how you feel. My brother suffered and went to the brink of death many times. He was diagnosed before me. To say that watching him suffer was overwhelming is a major understatement. It was a physical, emotional, spiritual pain that absolutely took my breath away. Today he is happily married with 3 children. They called the family in on him multiple times. There is hope Okie. Hang on to WHAT YOU KNOW IS TRUTH, not what you feel at the moment!!!
I will pray for you and your brother and sister-in-law tonite. I will contact some of my prayer buddies!! I'm so sorry girl. Judy

okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 7/7/2009 9:22 PM (GMT -7)   
Hi Lucy, Fran, Ginny, Stacie, Judy, thank you all so much. It's strange how we have our life planned out and then all of the sudden it's all different. They found a spot on his brain and we do have a first cousin that has MS. She has been in bad shape for 40 years. I just wish thee was something I coulddo to make a difference. I was reading about Micheal Jackson having lupus and a skin problem over laping it. As sad as his death sounds I truely wish he had not kept everything so private. It usually takes some one well known to really get any action. Judy I am gllad to hear that your brother is doing well. All I know for sure is it's much easier for me to deal with myself being ill then watching helplessly while it attacks people I love.
 
Another question do you only get flares when you have Lupus? Or does it happen with other A/I's as well? I have been nauseated for several days and my muscles are crawling all over each other. It's not the flu but in a way it's like it. plus I have been losing my balance quiet often. I mean in the scheme of things it's not a big deal but I was just curious if flares are only found in Lupus.
 
thanks again everyone
love ya
 CAROL
 systemic scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Detrol LA,spironal,Lisinaprol,furosemide,azithromiazin,plaquanil,pottassium,Citrocal,vicodin,percocet,tons of inhalers.
 
Bear ye one another's burdens
Galatians 6:2 KJV

 
 


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 7/7/2009 10:16 PM (GMT -7)   
Okie,
No. "Flares" and "remission" are common with other AI diseases. Alot of my family has rheumatoid and chrohn's disease. They have similiar periods of flares and remission. Okie, i'm so sorry. I really am so sorry. Judy

g*reed
New Member


Date Joined Jul 2009
Total Posts : 11
   Posted 7/8/2009 6:26 AM (GMT -7)   
Carol,
your absolutely right not enough is done for us with ai deseases it makes me sad. when i first was diagnosed with lupus i didnt even know how to spell it, needless to say i didnt know anything about it. i wish there would be more funding for research and education.
g*reed
28yrs. old., lupus


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 7/8/2009 7:09 AM (GMT -7)   
Carol,

Folks with scleroderma suffer from flares as well. My best friend has sclerodera, and although she does well most of the time, there are occasions when she goes into a bad flare.

Why don't you call your doctor and see if there's anything you can do or take.

((((Hugs))))

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


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 7/8/2009 8:29 AM (GMT -7)   
I'm so sorry Carol that your brother is going through this. Keeping you, your brother, and family in my thoughts and prayers.
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007, Localized Scleroderma 2009, Raynauds 2009
 
Meds: Plaquenil 400mg/day, Pred 2.5 mg/day (tapering), Methotrexate 10mg/week, Hydrocodone PRN, Flexeril PRN, Fiorinal PRN, Baby aspirin, Prenatal Multi, Vit E, B12, Fish Oil, Biotin, Calcium, Folic Acid


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 7/8/2009 2:05 PM (GMT -7)   
Hi Judy,G,dbab's Pat, thanks for the info. I of course have had these symptoms come up before but thought gee maybe it's something else.
I did go to my dr. about 10 days ago. she put me on levequin and steroids. & more days until my colonoscopy after that they are going to turn my info to the board that makes the decision about transplants or not. I still have a few thinks to do like a dentist and psychiatrist but that doesn't have to be done first. This dr told me to prep with the 3 oz bottles of flet stuff. which they said taste awful but is better then those huge bottles to drink. Well I am so tired I can barely keep my eyes open. but I wanted to write back nd thank you all for your love and support.
 
love ya
carol
 CAROL
 systemic scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Detrol LA,spironal,Lisinaprol,furosemide,azithromiazin,plaquanil,pottassium,Citrocal,vicodin,percocet,tons of inhalers.
 
Bear ye one another's burdens
Galatians 6:2 KJV

 
 


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 7/9/2009 11:31 AM (GMT -7)   
Carol, I'm terribly sorry to hear your brother's news.  You and your entire family will certainly be in my prayers.
 
Elcamino
Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Methotrexate, nexium, tramadol, nasonex,Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan, zyrtec, zegerid, aciphex


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 7/11/2009 7:03 PM (GMT -7)   
Carol,
How are you sweetie? HOw's your brother? I am continue to hold you up in my prayers. Feeling you heavy on my heart tonite! Judy

okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 7/12/2009 10:58 AM (GMT -7)   

Hi El, and Judy, thank you so much for responding. This pass week the nurses have come out and did iv's at the house of steroids. Now he is done with that and has 2 weeks of 80 mil. a day of steroids. That's a lot of. They did a spinal tap last week and there was no problem with it. We are just praying it's some type of infection and this will help.

as for me I have a colonoscopy wenesday and that will be (as far as I know) the last thing I have to have done to have the results given to the board to make a decision. I don't get to be there. I don't know how long the process takes. The only bad thing was the scleroderma so I don't know what they will decide. I still have to see and dentist and a shrink but they don't need that done prior to a decision. It's been a long battle but  what ever way it goes I will deal with it. It's the not knowing that is the hardest.

Frankly I am much more concerned about my brother than I am about myself.

God bless

carol


 CAROL
 systemic scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Detrol LA,spironal,Lisinaprol,furosemide,azithromiazin,plaquanil,pottassium,Citrocal,vicodin,percocet,tons of inhalers.
 
Bear ye one another's burdens
Galatians 6:2 KJV

 
 


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7020
   Posted 7/12/2009 12:07 PM (GMT -7)   
Hopefully the heavy Prednisone treatment will help your brother - he must be terrified, losing one's sight seems like one of the worst tortures anyone could face.

Good luck w/the Colonoscopy - I hope you get the results you need so you can be on the path to feeling much better!

Hang in there,
Lynnwood, Lupus & Sjogren's Moderator
Life is far too important to be taken seriously. - Oscar Wilde, 1882


FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 7/13/2009 8:30 PM (GMT -7)   
Carol,
How are you and your brother? Been keeping you both in my thoughts and prayers.
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.


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 7/14/2009 12:00 AM (GMT -7)   
Carol--
A friend with AI disease and going blind due to blood vessel problems lke you describe with your brother, just regained her sight with medication. They don't know if it will last.

The steroids will make any infection worse as you know, hopefully they ruled that out, sounds like it. Is he diabetic or prediabetic?

I just hope your family and you get a break here and things aren't as bad as they are making it out to be. Hopefully it is treatable and reversible.

I hope he gets good care and they get answers soon. And I hope you can try to take it easy and rest when you can, in all ways. YOu have been through and are going trhough so much. As always, my thuoghts and prayers are with you and now your brother.
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


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 7/14/2009 8:27 AM (GMT -7)   
Carol,

I pray that your brother's treatment will help. How are his spirits? And how are yours? I know you're worried about him.

Good luck with your colonoscopy. I'm so glad that this nightmare of test after test is finally coming to an end. As efficient as the folks at the transplant center are, I doubt it will be too long before you get an answer. I hope you'll call me the minute you hear anything.

Hang in there girlfriend.

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

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