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tgal
11-09-2010, 08:31 PM
Well, I have a feeling I am about to have a bad spell. I woke this morning with 1 blister in my mouth and tonight I have 4 on my tongue and 1 in my nose. This is how they always start for me. Funny thing is my daughter noticed something last night because she said to me "Mom, are you about to have a spell?". LOL Isn't it sad that even those close to us begin to learn the patterns of our illness.

I have to go grocery shopping in the morning and then I am going to come home and hit the couch. Hopefully if I go down now and rest I can keep it from getting too bad. Cross your fingers for me, please!

xani's mom
11-09-2010, 08:35 PM
tgal-
Good luck! I'm five years in and still can not recognize when I might flare or why, so at least you are one up on that. Can you call your doc and get started on a dose of the dreaded prednisone to keep it at bay, or does he make you wait until you are full on?
Truly-Heather

tgal
11-10-2010, 06:54 AM
Oh Xani's mom I can't always tell but I do know that each time before when I have had really, really bad ones they have included the blisters. It is the only time I get them so I would be surprised if they were not a sign of things to come. I am crossing my fingers though.

As for the pred. I take a dose daily and have since Feb. I have been out of a job since April and insurance since Oct. There are no trips to the doctor in the budget at this time. It will pass. It always does. Thanks for being so kind though

debbie-b
11-10-2010, 07:18 AM
Hi tgal,

Like you, I have certain signs and symptoms, that alert me that a flare is coming.
It may be better to know, that it is coming. Then you can rest asap and maybe it won't get as bad.
When I feel mine coming on, I get a steriod shot ( if I can get into the rheumies office), sometimes it helps, sometimes it does nothing.
Hope your flare is not so bad and you get over it soon.

Debbie

BonusMom
11-10-2010, 08:01 AM
Sorry you've got the nasty blisters. When I've gotten them, coincidentally, my WBC levels were also low so maybe upping your folic acid will help your blisters heal a bit faster.

Hope you feel better soon.

Saysusie
11-10-2010, 05:23 PM
Hi Tgal;
How funny that our warning systems are essentially the same. I woke up this morning with blisters in my nose, a raging headache, uncontrollable chills and fatigue...sure signs that something bad is coming :-)
I hope that your is not a bad flare-up and that it goes away quickly.

Peace and Blessings
Namaste
Saysusie

xani's mom
11-10-2010, 05:40 PM
I think I read that you take 5 mg of the dreaded prednisone a day. That is not going to help you much, especially if you take it regularly. I am so sorry about your insurance. Could a lawyer or somebody try to help you get it back? Tgal, I can't imagine going without insurance it hurts my heart that you are in that situation. Is there some kind of aid that could help you? I hope you feel better soon, stay off your feet.
Hugs-Heather

tgal
11-11-2010, 07:22 PM
Oh I know 5mg isn't going to help. It never has. As I said, I take 9 meds and all they do is keep me treading water not feeling good.

I do have an update to the Disability that we have been working on since June. Although I had a neuropsych test already (6 hours worth) the SS Administration feels like I didn't have a "complete" neuropsych/mental status evaluation. They have set an appointment up for me on the 22nd at 11AM to have this test and find out if they are going to give me my disability and medicaid so I can return to my doctors. Keep your fingers crossed!

magistramarla
11-11-2010, 10:19 PM
Hey Tgal,
I hope that you are feeling better tonight! So, do the disability powers-that-be want to prove that you are crazy, or what? Would being crazy be the only way that they would give you disability? Seems like a pretty odd requirement to me!
Hugs,
Marla

debbie-b
11-12-2010, 05:51 AM
Oh I know 5mg isn't going to help. It never has. As I said, I take 9 meds and all they do is keep me treading water not feeling good.

I do have an update to the Disability that we have been working on since June. Although I had a neuropsych test already (6 hours worth) the SS Administration feels like I didn't have a "complete" neuropsych/mental status evaluation. They have set an appointment up for me on the 22nd at 11AM to have this test and find out if they are going to give me my disability and medicaid so I can return to my doctors. Keep your fingers crossed!

Fingers are crossed.
If that is what it takes, if they want crazy, GIVE them crazy. ( I know, bad joke).
It really makes me mad, that we all get the crazy stamp on our forehead.
They don't get it, WE ARE LUPUS PATIENTS, NOT MENTAL PATIENTS. Those are two different diseases.
Well my friend, I wish you luck and hope that your flare is on it's way out.

Debbie

tgal
11-12-2010, 09:30 AM
Hey Tgal,
I hope that you are feeling better tonight! So, do the disability powers-that-be want to prove that you are crazy, or what? Would being crazy be the only way that they would give you disability? Seems like a pretty odd requirement to me!
Hugs,
Marla

LOL No Marla they don't have to prove that I am crazy (although that would be easy enough!LOL). The seizures have caused damage to my brain and I not only have brain fog, I have no short term memory and I have diminished motor skills on both sides of my body. Because I have no firm diagnosis they want a longer neuropsych evaluation and mental health status. I think it is a good thing because at least I am one step closer to an answer

For those that don't know the neurophsych exam is a very long test that maps out the brain and lets them know what parts are working properly and what parts are not. My first one took 6 hours and I was vindicated because there was proof that my memory has been impaired and that my motor skills have diminished.

xani's mom
11-14-2010, 09:16 PM
Tgal-
Social security disability is a straight pain, and I am fairly sure they have to deny you the first try. I am very lucky I have a great job and I draw disability from my retirement. But my retirement is trying to get s.s.d. to recoup some of my retirement, and they turned me down the first time and on appeal. Now I have a hearing and my lawyer says its a no brainer. They just want to make you do through all the appeals, I hope you have a lawyer. If not I would get one most of them work on a percentage of backpay basis and don't cost you anything up front. Social Security Disability is enough to make a person mentally crazy, they should automatically consider you insane upon your first appeal. Good Luck I hope it starts coming together for you soon.
Hugs-Heather

tgal
11-14-2010, 10:05 PM
Oh Xani... Don't get me started about Disability from jobs. I had a fabulous job and I paid for long term and short term disability and they did everything they could to deny me. I ended up getting only 12 weeks pay out of it. It was a horrible waste of many years worth of money!

In my old position I worked with many attorneys and I am lucky enough to be having one help me. With my memory issues I am not sure I could do it alone. The other good news is that she has helped two other people and neither of them were denied. I am hoping the same happens for me. We have been working on this since June and I really need to get it moving.

I agree about it making you insane. The whole process has been insane!!! Thanks for the good thoughts