Monday, May 18, 2009
A new page has been turned as far as my illnesses are concerned. I previously wrote about the seizures and that is still happening. Life is what it is. But I am not 100% positive that they are seizures. I believe that it's Lupus Celebritis rearing its ugly head in a huge way. I do not know how much longer I can write posts that would make much sense. I'm falling quite a bit and my eyesight is blurry most of the day. Hubby and the kids tell me I do things that are not normal. I cannot control this and when your brain is diseased there is no way to get a handle on it. I have a call into my doctor and am waiting anxiously for him to return it. So far he hasn't.
Please pray for me.
Again, I am going to quote my good friend, Lorettta........ I am not complaining........ just making a statement of facts. Thanks Loretta for that one.
Tuesday, May 12, 2009
Lupus has come back and reared it's ugly head once again. I am trying to deal with this the best way I know how to. Most of the time it works well. I manage to get through my day without much thought about what life has thrown my way. Lately I have been having a hard time with it. Things have been happening again. Flares have been coming more often and lasting a lot longer. The seizures have returned. That part is the hardest for me. Here in South Carolina (as I am sure it is in all the states) a person cannot operate a motor vehicle unless they have been seizure free for at least 6 months. Therefore I am confined to my home. My independence has been taken away from me. Where we live is very rural. There is no city transportation. Walking to shopping areas is unthinkable because they are so far away. I am left to depend upon others to drive me around. This makes me sad beyond sad. Not a day goes by that I do not end up crying. It has gotten to the point that when I wake up in the morning and after my meds take effect I get into the shower to let the hot water pound on my back to alleviate some of the pain and stiffness. Then I wash up. What am I going to do tday, I ask myself? I never have an answer because there is never anything to do. I get back in my pajamas do what little has to be done aroaund here and then I sit around. Sometimes I venture outside to weed and water my garden. Or I make a wreath or back something. Then it is still early so I sit and watch TV. Believe me there is nothing on worth watching during the day. But I watch it anyway.
I try not to complain. I try not to dwell on this stuff. But it is so very hard. I want my life to be the way it used to be. It should be the way it used ot be. I loved getting up and going to work. Not I feel useless.
Sunday, February 22, 2009
Thursday, February 19, 2009
Thursday, January 29, 2009
Wednesday, January 28, 2009
I have been fighting the battle of Low INR. For those of you who do not know that is the number explaining how thick or thin my blood is. Too low and my blood is thick. Too high and my blood is too thin. It's been low. I've had about two or three TIAs this week. Finally this morning I ended up calling my doctor who told me to get right over to the hospital and get evaluated. I did that. They did the usual stuff. Took blood. Gave me a head CAT Scan. And, adequately treated the horrific head pain that always accompanies these episodes. I was referred to a Neurologist. I haven't been to one since we moved down here. I will call tomorrow and make an appointment.
I am HAPPY HAPPY HAPPY! Life is good. Hubby and I celebrated our Silver (25th) anniversary on the 16th. We went out for lobster (a gift from my son). My daughter gave me a gift certificate and gave her Dad a brick of bullets. He is into guns and has a carry permit. Then they surprised us with a party. We were really surprised. We got back from dinner and walked in the house and heard 'SURPRISE'. My brother and sister in-law gave us the best gift. It was a light weight vacuum so I don't have to sweep. It picks everything up. I suggest you get one. Mom gave us a few beautiful gifts and cash. It was wonderful.
That is not all that is making me happy. I am just feeling very content with my life. And, this is a good thing.
Sunday, January 18, 2009
Snagged from JoAnne...
Sunday, January 11, 2009
The Spoon Theory
by Christine Miserandino
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
Wednesday, January 7, 2009
Sunday, January 4, 2009
I have a lot of what is discussed below. Especially antiphisiploid antibody syndrome and Lupus Cerebritis.
There are a number of theories regarding this. Here are a few from the following web sites:
This one concludes that.....
The answer to the question, "Does ANA-negative lupus exist?" is technically "yes", with a large number of buts, and ifs, and whens. Another answer is that the question is not very important. It is never critical to say definitively that a given patient does or does not have lupus. What is important is to evaluate the current symptoms, to put the symptoms into an overall context that includes blood tests, duration of symptoms, other illnesses, and medications, and to develop a treatment plan based on the total information rather than on a blood test alone.
The Lupus Site Exclusive - Interview with Daniel Wallace, M.D.
Daniel Wallace is the author of the hugely successful 'The Lupus Book', and is considered to be one of the world's leading lupus specialists.
Q - I often get emails from people who have negative blood tests (e.g. ANA, anti-ds DNA), and have therefore been told that they have not got lupus. What are your thoughts on this matter, does a negative test on one occasion necessarily mean that lupus can be ruled out?
A - ANA negative lupus is only seen in discoid lupus, antiphospholipid syndrome and patients who have had so much steroids or chemotherapy that their test becomes negative. Anti DNA is present in only half with lupus and is not definitive.
I am 33 years old and have been sick for the last 12 years. I catch everything going around but on top of that I have been hospitalized more times than I can count for pyelonephritis (severe kidney infection), infected gallbladder that was removed, aseptic meningitis 4 times, bacterial meningitis, asthma, pneumonia, shingles, severe migraines that cause dementia and/or speech problems, and on and on. I have been told I also have a brain cyst. I was recently hospitalized for aseptic meningitis however now the doctors are saying it may not have been meningitis. When my spinal fluid was taken it was clear, at that point I was told it wasn't meningitis though I had a fever, neck stiffness, and a terrible headache. An hour later, after testing, I was told I did in fact have aseptic meningitis because my spinal fluid had 636 WBC. I was admitted to the hospital for 8 days during which time doctors finally tried to determine what exactly was wrong with me. Throughout the years I have heard diagnoses of fibromyalgia, MS, Lyme disease (even tho to my knowledge I have never been bitten by a tick), etc. I was also found to have low levels of potassium & they were scared of heart failure so I was put on the heart floor & strapped to a heart monitor. I received IV potassium the entire time I was in the hospital. I was also severely anemic. My spinal fluid came back positive for herpes simplex after 5 days but I have NEVER had any type of herpes outbreak-not even a cold sore.After the hospital stay I was sent to an immunologist who ran tons of additional tests and he said I had a low C4 but a negative ANA which led him to believe I have lupus cerebritis (which he said is central nervous system lupus). He has now referred me to a haematologist and a neurologist. (He said ANA was often negative in people with CNS lupus) I feel HORRIBLE everyday. My pain scale is constantly at a 7 or higher. My head hurts nonstop, my joints ache, I run a low grade fever off and on, I have "brain fog" as I can't seem to remember anything, sensitivity to sunlight (I get sick every time I am out in it...if out to long get the meningitis like symptoms)I have numbness & tingling in my left arm & leg constantly, I trip and almost fall a lot and weakness in my left side. When my head hurts really bad I also have a tendency to talk "gibberish". I hear normal words coming out however my family hears "gibberish" (just sounds not actual words...my mom describes it as me talking a foreign alien language)Does this diagnosis sound feasible? Anyone hear with lupus cerebritis who can tell me anything about it?I would appreciate any help you could give me....SOMEBODY PLEASE RESPOND WITH YOUR THOUGHTS...
Re: lupus cerebritis?!?
Did you book appts. with the rheumie & neurologist yet? I hope you're set to go on both. Hopefully you'll be evaluated for all possible conditions. I'm guessing (but I'm only a patient) that in addition to lupus, antiphospholipid syndrome, a blood clotting disorder, might also be in the ballpark. APS can exist "standalone", or it can co-exist with lupus. APS can cause migraines, miscarriages, low platelets, strokes, indicatives, lung problems, etc. FYI, there's a "sticky post" on APS at the top of the thread list & "stickies" on lupus, too. ("Stickies" are permanent info posts.)As far as ANA being negative in the past... In your shoes, I'd ask a lot of questions about this! e.g., 1. Can ANA rise & fall with flares? 2. Were you tested for specific auto antibodies? Or did your earlier doctors stop cold when they found your ANA was negative AT THAT TIME? (My understanding is that some doctors order the ANA *plus* all sorts of specific auto antibody tests *simultaneously*. This allows them to look all at once for the most specific lupus blood markers; for APS markers; and for the RARE instance of ANA-negative lupus. By specific auto antibodies, I mean things like anti-ds-DNA, anti-Sm, anti-Ro, anti-La, antiphospholipid, antineuronal, etc. One of the "stickies" discusses test results.)
This is interesting reading. I suggest you click the links and read the entire web site.
I would love to hear what you guys have to say on this subject.
Good Morning and Happy New Year! I cannot believe that it is 2009 already. It was just 1979. That was 30 years ago. That was when life was quite different for me.
At that time I was a young woman of 22. Now I am approaching 52. Geez, where did the time go?
Today I am doing a 24 hour urine catch. For those of you who do not know what that is, I have to go in a jug for the next 24 hours. It has to be stored in my frig. Ewwwwwwwwwwww But this will help the doctor find out what is going on with my kidneys. Last Monday I was at my Primary Care Doc and he took a urine sample. He found some strange bacteria in it. It had to be cultured. I have yet to find out what is going on with that. I guess the holiday screwed things up.
I'm feeling extremely fatigued. My joints are killing me. I feel like crawling up in a ball and hiding underneath the covers all day. Plus I am still having that pain in my left kidney. I wish someone would figure out what is going on.
But I cannot crawl up under my covers. I have things to do. Today will be busy.
Hugs and kisses,