90% of doctors are sure Obamacare is going to tank. 95% of polled physicians say the doctor patient relationship will suffer.
Appointments will go from 3-30 days to see a GP to an average of 90 days to see a general provider. Preventive medicine will ceast to exist. We are headed to a two tier system, and you guessed it, the rich will be able to afford the good docs, good testing and referrals, and the poor will wait until our bodies are ravaged with cancer, lupus or shriveled in pain for mediocre care.
And the effect to the economy will be catastrophic. Small businesses won't be able to afford decent insurance and sub par insurance will attract sub par employees.
Justice Roberts maybe always had the stealth to surprise us with calling a tax, a tax, but he's left a really nasty taste in my mouth and it's not just because I have a chronic disease like lupus. Saying he forged bipartisanship isn't the job I thought the Supreme Court was set up to do. Instead it seems like a tyranny and disrespect of the law.
Btw, I live in Arizona and how Eric Holder gets out of being prosecuted for contempt of court simply beats me. I don't get it, there's a scandal going on. Does it really happen ALL the time that we sell guns to ourselves and there are more "Brian Terry's" out there? Where is that letter from the justice department on "fast and furious"? Is it morally acceptable to just send an attachment on an email to the parents of Brian Terry?, not even worth a simple phone call. Why did the department not even release a LOG from the fast and furious program?
We all know that huge taxes are about to hit families with chronic illness first. I really believe that families with debilitating chronic illnesses should not even be taxed. Just because allowances are made for pre-existing conditions doesn't mean the premiums will be at less cost or easy to acquire. Sure, we can cover you with lupus, please get into line #3, have your copay ready and we'll get you seen and tested 4 months from now with specialists or better yet, their flunkies and PA's.
I can tell you one thing, it's NOT going to get better. It's going to get worse. I think we need to get that through our lupie brains right now., before we forget to have that MRI we were scheduled to have for memory problems.
Here's a good article on the burden of Obamacare: Why Obamacare is not enough?
Saturday, June 30, 2012
Saturday, June 23, 2012
Did I just have a TIA or Lupus Headache?
June 23rd, 2012
UPDATE: June 26th, 2012
I may have had a TIA, it is likely it was a pulsating severe migraine with cranial nerve involvement. Sat eve my nose turned red and the left side of my face went numb. My platelets tested a little more than twice the highest normal range and I was put on blood thinners. The hospital I went to did not have a carotid ultrasound to check me for blockage.
All I can say is: PLEASE better safe than sorry. If you have a severe headache that presents all of a sudden or numbing on one side of the body, GO to the ER and call 911 immediately. Your life can be saved if you get there FAST!
Friday, June 22, 2012
Labs don't reflect Lupus Disease Activity
I
found this article at ehow. What I'm interested in is that LABS for SED
RATE and COMPLEMENT LEVELS CAN BE INFLUENCED by HIGH WBC's & HIGH BLOOD
GLUCOSE!
One of my biggest problems is that I'm overtreated with Prednisone because my rheumatologists won't treat me with any biologicals because my sed rate and compliment labs are normal. My ANA is high, but the other tests are normal, even during periods of disease activity.
WHY do my sed rate and complement labs show normal? My WBC's are up to 22 and climbing and my sed rate is down to 6. Could the high WBC be accounting for the normal labs???? This is important because it influences TREATMENT!
from ehow:
About Sed Rate Blood Test Results
By Beth Celli, eHow Contributor
Sed rate or EST is the common name for an erythrocyte sedimentation rate. This blood test is drawn using a needle into a lavender stoppered tube that has the additive EDTA in it to prevent the blood sample from clotting. The Sed rate test indirectly measures inflammation in the body and is considered non specific since it can not pinpoint where in the body the inflammation is occurring. Sed rates are commonly used along with other tests to present a complete clinical picture.
One of my biggest problems is that I'm overtreated with Prednisone because my rheumatologists won't treat me with any biologicals because my sed rate and compliment labs are normal. My ANA is high, but the other tests are normal, even during periods of disease activity.
WHY do my sed rate and complement labs show normal? My WBC's are up to 22 and climbing and my sed rate is down to 6. Could the high WBC be accounting for the normal labs???? This is important because it influences TREATMENT!
from ehow:
About Sed Rate Blood Test Results
By Beth Celli, eHow Contributor
Sed rate or EST is the common name for an erythrocyte sedimentation rate. This blood test is drawn using a needle into a lavender stoppered tube that has the additive EDTA in it to prevent the blood sample from clotting. The Sed rate test indirectly measures inflammation in the body and is considered non specific since it can not pinpoint where in the body the inflammation is occurring. Sed rates are commonly used along with other tests to present a complete clinical picture.
1. What it Measures
a
When erythrocytes, or red blood cells, clump together to form a column like
structure it is called sedimentation. This occurs due to a change in the plasma
proteins and this usually occurs slowly since normal red cells do not form this
column or rouleaux. Sed rates actually measure the rate the red cells settle
out of anticoagulated blood in one hour. The faster the red cells settle, the
higher the sed rate result will be.
The Science Behind It
b
The test is based on the fact that inflammation causes changes in plasma
proteins that can result in the sedimentation of red cells. The protein changes
cause the red cells to clump. The clumping makes them heavier and more likely
to form the rouleaux formation when placed in a test tube in a vertical
position. It is most often used to diagnose arthritis and arteritis.
Abnormal Results
c
Abnormal results can be seen in many disorders. High sed rates are frequently
seen in infections such as pneumonia, lupus, inflammatory
diseases, certain types of cancers, heavy metal poisoning, and in
myocardial infarctions. Abnormally high levels can also be seen in rheumatoid
and other types of arthritis, hyper and hypothyroidism, gout and some types of
anemia. Obviously, a wide variety of conditions can be indicated by an elevated
erythrocyte sedimentation rate.
Things that May Interfere
d
There are certain things that can negatively affect the specimen. If the sample
is left to stand for more than 24 hours, the sed rate begins to decrease.
Conversely, if the sample is refrigerated, the rate begins to increase. The
sample should be allowed to warm to room temperature before being run if it has
been refrigerated. Pregnancy, menstruation and certain drugs can also skew the
results to be high. A high white blood cell count, high blood sugar
or sickle cell anemia are just some of the conditions that can cause a very low
sed rate to occur.
Monday, June 18, 2012
A Small Miracle To Be Recognized
My husband and I recently had a hearing with state insurance. We live on his SSDI btw, he has severe spinal stenosis and anxiety. We depend on state insurance for my medical needs. We were recently notified by the state that we were no longer eligible for the insurance. WOW....UH OH, my head was spinning! Panic Panic Panic!
Then came the hearing. We had it over the phone with a judge. My husband handled it. He told the judge, I don't care about any of the benefits EXCEPT that you keep my wive's medical. She is very sick, she has lupus and it is the only thing that is important to me.
THAT JUDGE LISTENED AND HELPED US. He qualified me under state disability guidelines, and I'm now covered under the different eligibility requirements., with no gap in coverage.
It's a small miracle. There were no forms, he did have me fill out pages and pages of paperwork. He just did the right thing. He DID THE RIGHT THING.
In this day and age, it deserves to be noted. There is still compassion and common sense and it is alive and kicking in this Judge's heart, and now in mine.
I wish this judge who saved me, prosperity and blessings. Thank you "Your Honor". Thank you with all my heart.
Julie
Then came the hearing. We had it over the phone with a judge. My husband handled it. He told the judge, I don't care about any of the benefits EXCEPT that you keep my wive's medical. She is very sick, she has lupus and it is the only thing that is important to me.
THAT JUDGE LISTENED AND HELPED US. He qualified me under state disability guidelines, and I'm now covered under the different eligibility requirements., with no gap in coverage.
It's a small miracle. There were no forms, he did have me fill out pages and pages of paperwork. He just did the right thing. He DID THE RIGHT THING.
In this day and age, it deserves to be noted. There is still compassion and common sense and it is alive and kicking in this Judge's heart, and now in mine.
I wish this judge who saved me, prosperity and blessings. Thank you "Your Honor". Thank you with all my heart.
Julie
Sunday, June 17, 2012
Young lupie NEEDS OUR HELP
I was checking for new lupus videos on youtube and I came across this sweet scared
young girl who made a vlog on youtube reaching out for help. Her ANA was
negative and she said she thinks she has lupus. Her doctor told her she
had fibro, did not refer her to a rheumatologist and threw some
cymbalta at her with no explanations. WOW. So I made this. lol, I'm
still waiting for her to see all the people who have written to her
since at youtube! I told all my lupie friends online and they have
reached out to her as well, this was a couple days ago and we still
haven't heard anything!
Here is our new friend's youtube video! If your reading this please reach out to her. We all need all the support we can get, especially the young lupus likes to go after so mercilessly.
She is tara1028426 at youtube. Here is her video:
Thank you all....Much Love, Julie
Here is our new friend's youtube video! If your reading this please reach out to her. We all need all the support we can get, especially the young lupus likes to go after so mercilessly.
She is tara1028426 at youtube. Here is her video:
My music videos about LUPUS!
Hope you like them. The first one is about lupus support groups online and about lupus symptoms and is done to Carole King's "You've Got A Friend" who graciously allowed me to use her song and gave her sign off on the video! That was SO exciting! Here is the musicvideo!
And here is the musicvideo I made about the 11 symptom criteria used to diagnose lupus. I hope you guys like it. Watch out, lol, theres one part that gets really REALLY loud!
Thank you so much for watching! HUGS, Julie
And here is the musicvideo I made about the 11 symptom criteria used to diagnose lupus. I hope you guys like it. Watch out, lol, theres one part that gets really REALLY loud!
Thank you so much for watching! HUGS, Julie
This is my Lupus! & See My ACTUAL ANA LABS & Vlogs
My major complications with my lupus are cranial neuropathies, caused by damage to the myelin sheath on the cranial nerves, severe peripheral neuropathy, anemia, kidney damage is in remission, extreme photosensitivity, vascular lesions, rashes, hives, vasculitis, constant viruses causing muscle weakness, plantar fasciitis from connective tissue damage, retinopathy, and I'm sure I'm forgetting some...OH lupus fog, lol, reynauds, livedo reticularis, hair loss, joint and muscle pain, fatigue, gastroparesesis...I'll come back later... I take 22 medications a day. I also have osteoarthritis, cervical splondyosis, diabetes, hypertension, pcos, pernicious anemia. Again I'm sure I'm forgetting..so I'll just say, lupus fog.
I just fired my rheumatologist for IMO undertreating my lupus. For lupus I take 400mg plaquenil, meloxicam and usually 40-60mg of prednisone during flares., which so far has been about 5 times a year. I already have cataracts and a definite love/hate relationship with the stuff. It's the best worst drug ever!
I'm on a mission to get Benlysta. I found a new rheumatologist who will prescribe Benlysta and has an infusion center in his office. I don't understand why my previous rheumatologist refused to treat me with any biologics or imuran or methotrexate. Instead he's continued to treat me with high doses of prednisone. I thought those other meds were instead of.
My ANA is and always was highly positive. I have had trouble with the titer ANA test and have gotten messages from the lab that they cannot test my blood due to immune complexes. My rheumie said it's because the ANA in my blood is too high. They started using the direct ANA to test my ANA and it is always positive (once it was a low positive, just once) my smith antibodies and double stranded antibodies on the ANA panel are highly positive so I was dx'd early on during my first big flare in March 2010 by my dermatologist who did a couple core punch biopsies from a couple of my rashes from the sun (UV). At the time my rashes and skin were so bad that I tested positive for porphyrins in my urine and I still need to do the more detailed testing but I've not done it yet. I need to. Bad girl. Bad.
Anyway my blood platelets are high instead of low but I still have trouble with blood clotting. I understand that happens sometimes with lupus.
My problem with getting more agressive treatment lies in the fact that my complements are not usually low and my sed rate is not usually high. I don't know if that is a prerequisite to being treated with something other than plaquenil and prednisone but I aim to find out. Oh yeah. I'm on a mission to try Benlysta.
My goal is to have quality in life. I'm married 23 yrs this month to a great understanding guy, have two children, one grown, one only 11, I'm 50 yrs old, live in Arizona, and the trigeminal neuralgia and cranial neuropathies especially are eating away at me. I worry about cns lupus, I worry about tia,s and strokes since my grandmother had undiagnosed lupus, and so far I'm eerily following in her symptoms!, and she suffered hundreds of tia's in her later years, which I am approaching. We used a cane at the same time, had nerve damage and diabetes at the same time, skin issues and lesions and vasculitis, livedo reticularis, blood clotting problems, reynauds. It's unbelievable.
It's PULLING TEETH to get my doctors to put a stamp on the cause of my cranial nerve issues. I have trigeminal neuralgia (it comes in clusters of attacks), geniculate neuralgia, have had Bells Palsy twice, burning mouth syndrome, distortions in taste and smell, vagus nerve damage symptoms and some autonomal damage as well. I take anti-seizure medication for it and prednisone.
I just think there must be a way to nip it in the bud instead of wait for more serious cns problems.
That's my story. I spend most time at home. My home is my castle since I can't go out in the sun often., and I'm sick alot. You lupies know how it is. One minute fine, one minute sick. I am waiting the two yr wait for my SSDI hearing and I was denied twice. I'll blog about that. I contacted Senator Quayle's office and they inquired with the SSA for me and I have an attorney, so I'm hoping for disability soon. I am involved as much as I can online at support groups and gearing new people I meet towards meeting others like me with lupus online so they can not feel so alone. I make music videos when I can to help create lupus awareness.
If you made it this far, lol, thanks for reading. I hope something I say will help someone else with the same problems or questions. I'm always here and at youtube and answer all my mail. I'm just a lupie looking for living a better life and managing this dreaded disease.
Here are my videos and under them I will put up my ANA labs from March 2010.
((((HUGS)))) Love Julie
I just fired my rheumatologist for IMO undertreating my lupus. For lupus I take 400mg plaquenil, meloxicam and usually 40-60mg of prednisone during flares., which so far has been about 5 times a year. I already have cataracts and a definite love/hate relationship with the stuff. It's the best worst drug ever!
I'm on a mission to get Benlysta. I found a new rheumatologist who will prescribe Benlysta and has an infusion center in his office. I don't understand why my previous rheumatologist refused to treat me with any biologics or imuran or methotrexate. Instead he's continued to treat me with high doses of prednisone. I thought those other meds were instead of.
My ANA is and always was highly positive. I have had trouble with the titer ANA test and have gotten messages from the lab that they cannot test my blood due to immune complexes. My rheumie said it's because the ANA in my blood is too high. They started using the direct ANA to test my ANA and it is always positive (once it was a low positive, just once) my smith antibodies and double stranded antibodies on the ANA panel are highly positive so I was dx'd early on during my first big flare in March 2010 by my dermatologist who did a couple core punch biopsies from a couple of my rashes from the sun (UV). At the time my rashes and skin were so bad that I tested positive for porphyrins in my urine and I still need to do the more detailed testing but I've not done it yet. I need to. Bad girl. Bad.
Anyway my blood platelets are high instead of low but I still have trouble with blood clotting. I understand that happens sometimes with lupus.
My problem with getting more agressive treatment lies in the fact that my complements are not usually low and my sed rate is not usually high. I don't know if that is a prerequisite to being treated with something other than plaquenil and prednisone but I aim to find out. Oh yeah. I'm on a mission to try Benlysta.
My goal is to have quality in life. I'm married 23 yrs this month to a great understanding guy, have two children, one grown, one only 11, I'm 50 yrs old, live in Arizona, and the trigeminal neuralgia and cranial neuropathies especially are eating away at me. I worry about cns lupus, I worry about tia,s and strokes since my grandmother had undiagnosed lupus, and so far I'm eerily following in her symptoms!, and she suffered hundreds of tia's in her later years, which I am approaching. We used a cane at the same time, had nerve damage and diabetes at the same time, skin issues and lesions and vasculitis, livedo reticularis, blood clotting problems, reynauds. It's unbelievable.
It's PULLING TEETH to get my doctors to put a stamp on the cause of my cranial nerve issues. I have trigeminal neuralgia (it comes in clusters of attacks), geniculate neuralgia, have had Bells Palsy twice, burning mouth syndrome, distortions in taste and smell, vagus nerve damage symptoms and some autonomal damage as well. I take anti-seizure medication for it and prednisone.
I just think there must be a way to nip it in the bud instead of wait for more serious cns problems.
That's my story. I spend most time at home. My home is my castle since I can't go out in the sun often., and I'm sick alot. You lupies know how it is. One minute fine, one minute sick. I am waiting the two yr wait for my SSDI hearing and I was denied twice. I'll blog about that. I contacted Senator Quayle's office and they inquired with the SSA for me and I have an attorney, so I'm hoping for disability soon. I am involved as much as I can online at support groups and gearing new people I meet towards meeting others like me with lupus online so they can not feel so alone. I make music videos when I can to help create lupus awareness.
If you made it this far, lol, thanks for reading. I hope something I say will help someone else with the same problems or questions. I'm always here and at youtube and answer all my mail. I'm just a lupie looking for living a better life and managing this dreaded disease.
Here are my videos and under them I will put up my ANA labs from March 2010.
((((HUGS)))) Love Julie
Saturday, June 16, 2012
Flesh Eating Discoid Lesion Comes Back
The Rash Came Back!
I thought I got rid of THIS horrid itchy vascular lesion about six months ago, but it's back for another appearance. It started itching and forming last week when I had the mild chicken pox virus (I got from my son - who YES had the immunization) and I have had shingles before...So here's the pics from today, Saturday, June 16th, 2012. You can see my skin was already discolored from the discoid rash and lesion I had in the area the first time. My rheumatologist thought it looked just like a necklace. Some necklace, lol.
I thought I got rid of THIS horrid itchy vascular lesion about six months ago, but it's back for another appearance. It started itching and forming last week when I had the mild chicken pox virus (I got from my son - who YES had the immunization) and I have had shingles before...So here's the pics from today, Saturday, June 16th, 2012. You can see my skin was already discolored from the discoid rash and lesion I had in the area the first time. My rheumatologist thought it looked just like a necklace. Some necklace, lol.
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