Posted 6/29/2007 11:47 AM (GMT -6)

Hi Des and Pat, I appreciate your responding and your thoughts and prayers. Pat I have come to the conclusion that it NEVER stops raining in oklahoma! I am very glad that Jason's girlfriend called me and that she was able to get him to go to a doctor. He sounded more upbeat last night. My knees and arms and shoulders are really giving me fits right now. Plus I don't seem to be able to get much sleep. Ok I'll stop whining now. Thanks again for your thoughtful responses

love

carol


God Bless
Carol
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax.5mg
 
When things are really dark look up. You can see the stars.
 
 
 

Posted 6/29/2007 12:34 PM (GMT -6)
Carol, I feel so bad for you and also really bad for your son. I am so sorry that both of you are going through so much right now. I really pray that he continues to get the help he needs. I have read a lot of articles lately about the soldiers returing from Iraq and how they aren't getting adequate mental health treatment or even the medical treatment they need.

I'm sure all of the stress and worry have been hard on you and then the rain and humidity on top of it are making things worse. I hope there is a break in the weather soon. My heart broke for you when I read about your shopping trip. I can so very much relate to what you talked about. Not only am I terribly fat right now, my skin is a mess. I'm a pasty white color with red blotches all over me and my veins show through so much, my husband thought they were bruises all over me. My self esteem is in the toilet right now.

Carol, I'll say some prayers for you and your son. Hang in there. You are very loved here and we'll be here for you through all of this. You are always so supportive of others and now it's time we return some of that support to you. Take care

Love and hugs to you.
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; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

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


Posted 6/29/2007 1:38 PM (GMT -6)

Hi Hippi, Thank you so much. Your post brought me to tears. You sound like you are going thru the exact same thing. I am so sorry. I can't even stand to take a hower. I'm so pasty white with the bruises and veins everywhere. Like you my self esteem is in the toilet. Thank you for the prayers I really appreciate them. I know Jason does as well. Yeah it's pretty bad about the health care. I don't think we were prepared for the types of injuries that our troops are returning with. Most of the troops that are injured or worse have been by IED's (explosives) which causes brain damage even if you aren't right on top of it. He came home and had lost some of his hearing and suffered from horrible migraines. That was in 04. It's taken this long to come up with the possibility of TBI. I have read articles that up to 83 percent of the troops in combat areas could have some type from mild to severe forms of brain damage. I'm proud of his service and greatful he came back but I want him fixed now! Oh well don't get me started on that one.

Anyway thank you for your response. Hang in there.I have never met you but  I know you have a beautiful heart no matter what else is happening with your body. Maybe we should go into the lupus clothing design business. We deserve to have nice things too!

Love ya

carol


God Bless
Carol
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax.5mg
 
When things are really dark look up. You can see the stars.
 
 
 

Posted 6/29/2007 4:42 PM (GMT -6)
Hi Carol,

So sorry to hear about the troubles with your son. Wonderful that he has a girlfriend who feels comfortable calling you to talk. I am glad he sounded more upbeat when last you spoke to him. Now we need to see what we can do so you sound more upbeat! You too Hippi! I'm just beginning to experience the sun difficulties and don't have nearly the problems other folks do here, but I can totally relate.

Hugs and Love,
Sue
Diagnosis: Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena (both diagnosed in 2006)

Meds: prednisone (5.0 mg wish I could taper), Imuran (2X50mg), Prilosec (20mg), Paxil (10 mg, replaces Prozac), AmbeingCR (12.5mg)

Posted 6/29/2007 8:09 PM (GMT -6)

Hi Sue, thank you. I hope things are going a little better in your neck of the woods too. My rash doesn't have anything to do with the sun. In fact it's on places that never get any sun. It's weird some look like really bad vericose veins and mixed in with them are these round purple things that are the size of a silver dollar. They just stay the same or get worse but they never go away. It's really hard to deal with. There are a couple little tiny ones on my face that I don't think anyone but me notices. Yet!

Hope you have a great weekend

love ya carol


God Bless
Carol
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax.5mg
 
When things are really dark look up. You can see the stars.
 
 
 

Posted 6/29/2007 11:56 PM (GMT -6)
Carol,

What you are describing sounds a lot like vasculitis to me. You may want to call your doc about it. I hope it turns out okay, but to be on the safe side. Have you had this before?
"Des"
Co-Moderator ~ IBS Forum
Co-Moderator ~ Lupus Forum 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Klonopin 2mg/day (tapering to PRN), Miralax 17g, Supplements


http://www.healingwell.com/donate

Posted 6/30/2007 12:29 AM (GMT -6)
Carol,

Oh, there is nothing worse than the worry over a child no matter how old especially when they are far away and you can't see them. Somehow seeing them helps, even if you can't *make* them do what they need to do to help themselves. I am glad Jason's g.friend called. I so hope he will be able to get on the road to getting the right diagnosis and the right treatment. It is criminal, but like you said, let's not even go there.

Okie, I think most of us have changed in appearance due to these diseases in some way. We look in the mirror and don't see the person we used to see. When I'm down in the dumps about other stuff, it's especially depressing, so I try to not even look in mirrors then. Really. When I"m feeling my usual self, I'm getting used to it, I guess. I figure my job is to just try to do the healthy stuff and it sounds like you're doing that so give yourself a pat on the back for the diet and exercise.

You know I'll keep you and your son in my prayers. And for heaven's sake, enough of the rain in Oklahoma already!!!

xoxo emmie
</FONT>

SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy

Posted 6/30/2007 6:08 AM (GMT -6)
Hi Okie,
I'm so sorry to hear about your son. No matter what age our children are, they are such a worry. I really hope the doctors are able to help him, and I will keep him in my thoughts.
I understand about the rash, I hate mine and always try to cover it up. It makes you feel so ugly. And the rain!!!!!!!! omg. I thought you were in the uk! We have had rain after rain after rain. I am so lucky because we haven't flooded, but the poor people in the midlands have had it really bad. I want a nice clear DRY day here and I want one for you too. Love & Hugs x x
Chillblain Pattern LE, possible SLE, tachycardia, proctal fugax, anismus, slow transit constipation.
 
Prednisoloe, 35mg
Tramadol
diclofenick

Posted 6/30/2007 6:25 AM (GMT -6)
Carol,

I am so sorry to hear about your son, Jason I will keep both you and him in my prayers...I know it must of been devastating for you... Please take care of yourself and know that regardless of how we feel God is in control and he has Jason in the p[alm of his hands and will provide the answer...I glad to hear he has such a loving girlfriend and that she managed to get him to a dr.....Please keep us posted when you are up to it....

Your Friend in Texas,

Sheryl
Bi-polar Depressive, PTSD, SAD, Sleep Apnea ,Diabtes, Diabetic Neuropathy, possible Lupus or something


Meds:

Tegretal 200mg ( 4 tabs a day ), Wellbutrin XL 300mg, Clonazepam 2.5mg, Lyrica 50mg ( 2 3 times a day), Byetta 10mcg 2 injections daily, Simvastin 20mg, Metformin 1000mg( 2 times a day) Tramadol 50mg ( 2-3 every 6 hours for pain) Hydrocodone/Apap 5mg /325 mg( 1 every 6 hours )

Posted 6/30/2007 8:33 AM (GMT -6)
Carol, I'm so sorry you are having a rough time. We all know stress is the worst thing on us. It is also impossible to not worry about our children, we are mothers first, that is what we do best! It was very thoughtfull of your sons girlfriend to keep you in mind. Try not to worry too much it sounds like she is taking very good care of him. I will keep you both in my prayers. I also agree with Des. I too have all this strange things going on. I have a cousin who has vasculitis & this is exactly what he done. Now it is just getting docs to see this!
Posted 6/30/2007 9:12 AM (GMT -6)

Carol, I just wanted to see how you were doing today.  This morning I read about all of the rain and flooding that both Oklahoma and Texas are getting.  I hope that you aren't in one of the flooded areas.  I also read another article today about the problems the service men and women are having after being wounded.  You might have read this already, but here's the link.  I kept thinking about your son while I was reading it.  http://www.msnbc.msn.com/id/19293485/.

I smiled when I read your idea about starting a clothing line to help us lupies feel beautiful despite all the rashes, white skin, and extra pounds.  We need something like that.  I've been trying to think of clever names you could call the clothing line, but so far my foggy brain can't think of anything.

I do hope you get your skin checked out.  I didn't even think about vasculitis - I don't really know anything about it. 

I hope today is better than yesterday and maybe you'll see the sun today.  Take care

Love and hugs


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; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

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


Posted 6/30/2007 10:54 PM (GMT -6)
Carol,
   (((hugs))) Bless your heart! I'm so sorry your son is going through that. I hope he continues to get the help he needs to feel better. He will definately be in my prayers.
   I also hope you can find some relief in your health and worries. We mom's never stop worrying about our kids. I know that is putting alot of stress on your fragile body...((Hugs)). Carol, you are always in my thoughts and prayers as well as everyone here. You are such a loving, caring, thoughtful lady. Sending many, many prayers for you now!
                                           Love and hugs, Babs
 
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
Meds:Arava,plavix,aspirin,protonix,gabitril,zanaflex,xanax,
mirapex,advair,foxamax,donnatal,folic acid.
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

Posted 7/2/2007 11:55 AM (GMT -6)
Carol,

The sun just came out and it made me think of you. I read a news article yesterday that said that Oklahoma was supposed to get another 16 days of rain. This is crazy. It has never rained like this in the summer. In fact it usually doesn't rain at all in the summer. I know how much it's affecting you and just want you to know that you're in my thoughts and prayers. Let us know how your son is doing.

By the way, when you start that clothing line, put me on your mailing list!

Love,

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin

Posted 7/2/2007 12:55 PM (GMT -6)
Hi Carol.  I'm sorry I didn't write sooner.  I had a busy weekend working on my house.  How is Jason doing?  It usually takes about two weeks to notice the effect of psych drugs.  I sure hope he's feeling better.  I agree with everyone that we moms are wired to worry.  Are you feeling any better?  I think Emmie has the right idea- don't even look in the mirror when you're feeling blue.  At 5'0" tall and 200lbs, I look nothing liked I looked four years ago and I too get lots of bruises.  I have a permanent red rash on my throat.  I naturally have olive skin, but without any sun the "olive" color takes on a greenish cast.  Hmmm, 5 feet tall and green- little green men.  Please let us know how you're feeling.  I'm sending you and yours prayers and lots of positive energy. (((hugs)))

Dx: SLE diagnosed in 2005, major depressive disorder, diabetes, fibromyalgia, asthma, gerd, sleep apnea, hypertension, IBS
Tx: plaquenil, methotrexate, Imuran, prednisone 10mg, flexeril, prozac, lamectil, celebrex, lisinopril, actos, lipitor, nexeum, seroquel, advair, arthritis tylenol  PRN: ambien, neurontin, promethazine, xanax, albuterol
supplements: multi vitamin, C, flaxseed oil, calcium/D
             Better living through chemistry :D    Donna
 

Posted 7/2/2007 3:54 PM (GMT -6)

Hi Donna,Pat,Bab's, Hippi, Lion,BHK, Sheryl,Emmie and Des. I'm sorry I havn't gotten back to you all with a response before now. I'm usually a little better at it than this. It was a worrisome weekend. My son's girlfriend had a wedding to go to in another state so he and I talked alot Every time I saw his name come up on caller I.D. I held my breath. Anyway Michelle is back home now but between this and the rain I hurt so bad. I  needto go to the doctor but I knw she is gonna get down on me for not having a new rhuemy. It's not easy to find one that is excepting new patients or takes my insurance. On the good side at least I'm set up with a years supply of plaquenil. But I got to get into a othamologist! These little towns are so hard. Everything was right on the corner in arizona. and they are in a draught! I watched on the weather channel about the 115 degree temps there and it made me home sick LOL. My drive is so down the tubes right now. I can't even deal with doctors. I know it's gonna come back to haunt me. On top of that I need my xanax filled and I put in the request this morning and I havn't heard back yet. I have to have it by the 4th and I know my doctor won't be in that day. I really don't want to run out of xanax right now. Jason seems to be a little better but it's hard to tell from this far away. He's also so closed mouth it's hard to pry anything out of him.

Anyway, I havn't been posting but I have been reading. All of your thoughts and prayers have helped me so much. I just want to thank all of you for your kind messages to me and your support for Jason.

I hope you all have a wonderful July 4th and let someone else do all the work!

God Bless

carol



God Bless
Carol
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax.5mg
 
When things are really dark look up. You can see the stars.
 
 
 

Posted 7/2/2007 3:55 PM (GMT -6)
Hi Carol--
I'm sorry to hear that you are down and about your son. I go through so much with my 19 year old who has epilepsy. I sure hope that she gets him back into the doctor soon because with my son, he went a little bonkers and was committed like three times and lit himself on fire and did all kinds of crazy stuff until he just seized and we found out he had epilepsy. But with the right meds, he's my old son again. I don't know much about the kind of injury he sustained, but sometimes non-compliance on meds can be a sign that they are not giving him the right stuff, so I hope she can get him back in soon. Its' so hard when kids are grown, we can't ever stop being their moms, its just a fact of life, but we have no control now that they are older. I just saw a good movie about that with diane keaton, but I've been suffering from depression and brain fog and can't remember the name of it. It was on pay per view like a week or two ago and was really good. I hope you feel better soon. Do you see a dermatologist about the rash? Sometimes there's stuff they can give you. I know that I have some ruptured tiny blood vessels on my face and all and I noticed that this is common is several conditions in those gory pamphlets they have the waiting room and they may have something to shrink the blood vessels, like a calming cream or something, to make it less noticeable. I have a lot of pigment problems and it seems like I spend half the day putting on creams, none of which seem to be working, but I felt so bad about it for so long that I decided I would finally try to do something about it and there's been a lot of progress made in dermatology. I hope you feel better and I'm sending good wishes your way. I wish it would rain here so I could go outside and you can have all this sunshine we have. :)
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

Posted 7/2/2007 4:07 PM (GMT -6)
Hi Marji, I was just answering the posts when yours popped up. I'm so sorry you had to go through all of that with your son. Yes it is hard. Thank God they found out what was wrong with him. How horrifying! I'm sorry you are going thru this depression that seems to always live in the background trying to knock us out. I will take all the sunshine you want to send my way! We have places here that you can only see the tops of the houses because the towns have flooding so badly. You'd think it would be good for the crops but truth is its' ruined them. You have to have some good days to get out in the fields and everything is under water or too muddy. You'll see it in your produce isles soon. Local farmer are supplying me with some produce from their own gardens. That is a blessing. Fresh cucumbers and tomatoes leaf lettuce. garlic and onions and radishes. I had forgotten how nice it is to have a garden. It's sad that I can't get out and take care of one myself.
I havn't seen a dermatologist. My doctor has seen it several times. In fact that is what alerted her to the possibility of Lupus and started doing tests. It's ugly I hate it and I want it to go away. I had one doctor in the ER tell me it was from years of steroid use. My PCP never told me a name. I guess I should ask her and see what can be done.

Thank you for posting to me even though you are going through so much yourself. I am so sorry. Try to enjoy the holiday.
Hugs
carol
God Bless
Carol
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax.5mg
 
When things are really dark look up. You can see the stars.
 
 
 

Posted 7/2/2007 10:52 PM (GMT -6)
Hi Carol,

I hope you are feeling better....I was thinking about you on Sunday I went with my husband, and sister-in-law and her hubby to Oklahoma to the casino right over the border from Texas.....Had a pretty good time but it has been difficult to enjoy much of anything with my pain but my point was as we were leaving we saw the blackest clouds I have ever saw and got hit with flash flooding rain all the way home.....What part of Oklahoma do you live in ? We have had our fair share of rain here too but not as bad as in Oklahoma.....

I am seeing my pcp on Thursday to discuss pain management....I am hoping she will make some changes and that God willing something will work.....

Anyway keep your chin up and try to enjoy the holiday....

You are such a special lady even though we have never met the posts you have sent me have helped in ways I could never repay you...

I will continue to pray for you and your son....

love, Sheryl
Bi-polar Depressive, PTSD, SAD, Sleep Apnea ,Diabtes, Diabetic Neuropathy, possible Lupus or something


Meds:

Tegretal 200mg ( 4 tabs a day ), Wellbutrin XL 300mg, Clonazepam 2.5mg, Lyrica 50mg ( 2 3 times a day), Byetta 10mcg 2 injections daily, Simvastin 20mg, Metformin 1000mg( 2 times a day) Tramadol 50mg ( 2-3 every 6 hours for pain) Hydrocodone/Apap 5mg /325 mg( 1 every 6 hours )

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