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redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 10/9/2008 11:49 PM (GMT -7)   
I am still very tired. I am still having cognative issues. I am still terrified to drive. BUT there has been some improvement. Not a whole lot but I am on 200mg of Imuran and see the neuro at 10 this morning. I see my rheumy Monday too. I also get to see some people about weatherizing my trailer. Plus my neighbors are looking to see if for the $2000 we would have invested into fixing the place we have enough to be habitable we might not be able to trade up to a much much better place. I am applying for help with the rent now that I have the final paperwork required. No matter how it is looked at things could be worse. At least I have not continued to deteriorate mentally. I still have a month worth of classwork to do and 2 papers to write by Tuesday night. I missed class which is a big red mark against me but screw it I needed the sleep. As long as I pull off a B in the course I could really care less. I will be dropping 1 class as soon as it won't hurt me financially. I feel like I am beginning to see light from under this water or murky cloud. I will let you all know more as soon as I know more myself.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 10/10/2008 12:06 AM (GMT -7)   
Hey hun, sounds like a good idea to get your place winterized. with the cost of everything. It's so hard to get a loan these days too. I'm beginning to feel like I should stock up on groceries while I can still afford them. I'm sorry you have been so sick. It figures when you have so much going on. I hope you get that B! It has to be hard when you are have cognative problems to focus on much. Let us know what the neuro has to say. and give that baby a kiss for me.!
 
Possible scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, spirivia,aciphex,lasix,inderal,pot.chlor.,B12 
 Did you ever know that your my hero?
 
 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/10/2008 12:39 AM (GMT -7)   
Attitude is everything . . . . and it sounds like you are looking at things positively!! Go for it!

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, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

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


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 10/10/2008 6:44 AM (GMT -7)   
showed up for my neuro appointment only to be told it is at 1 not 10. lovely
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements


Tá mé breá
Regular Member


Date Joined Aug 2008
Total Posts : 140
   Posted 10/10/2008 7:40 AM (GMT -7)   
well better that than showing up at 1 and finding out it was at 10!
Marie-43 yr old mother of 6 grandmother of 1 going on 2!
dx 2008 - myelofibrosis - possibly autoimmune, osteoarthritis in spine, testing for possible MS or CNS lupus / vasculitis. family history - mother RA/Lupus maternal gma - lupus.
rx-cymbalta, propranolol, clonazapam, prednisone, progesterone cream, b6, b12, flaxseed oil, C.

"All we have to decide, is what to do with the time we are given" ~ Gandalf


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 10/10/2008 8:24 AM (GMT -7)   

Hey Redrose,

I have done this too, showed up for an appointment on the wrong day or the wrong time.   I keep my appointments on the refrigerator now, and sometimes look at them several times a day to make sure I am not forgetting any.  and even so sometimes I still get it wrong.

I do not see how you attend classes at a time like you are having.  I could not do it.  My mind is just not that capable anymore.  I have done it before, years ago when my youngest daughter was 9 to 14 years old. She is 39 now, and  even then it took me five years to get a four year degree.

I admire your determination, standing and fighting with so many things going haywire for you right now.

Hester


Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 10/10/2008 8:25 AM (GMT -7)   
Hang in there girl. Things will turn around. Judy

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 10/10/2008 12:22 PM (GMT -7)   
Well, I am to have another MRI and an MRA, she is doing a ton of blood work including B-12 and Vitamin D levels. I also get to see a neuropsych doctor for an evaluation. Oh boy. My rheumy will likely want to try changing my meds around a little more in the meantime.
 
She said aggressive treatment is necessary in CNS lupus.


Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 10/11/2008 7:37 AM (GMT -7)   
I am off to meet the new potential pcp will update after I have returned.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 10/11/2008 11:16 AM (GMT -7)   
The new pcp seems like a good choice. She said she has no problem treating my allergies, asthma, and other general health issues.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/11/2008 1:01 PM (GMT -7)   
Wooo hoooo !!! Glad your first visit went well! *phewwwww!!*

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, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

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


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 10/11/2008 4:20 PM (GMT -7)   
Thanks. She actually seemed to not care I am complicated, she has been in practice 4 years and said she has several complex cases that others might not have taken. Since I scare doctors I figure we will see when I get my first illness.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements

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