Adults With Arthritis Suffer With Poorer Health Related Quality Of Life

Main Category: Arthritis / Rheumatology
Article Date: 27 Apr 2011 – 21:00 PDT

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A new study reports that the health-related quality of life (HRQOL)
for U.S. adults with arthritis is much worse than for those without
this condition. Both physical and mental health are affected by
arthritis, which poses a significant health and economic burden as the
number of those diagnosed continues to climb. Details of this study
are now online in Arthritis Care Research, a journal published by
Wiley-Blackwell on behalf of the American College of Rheumatology
(ACR).

Approximately, 50 million Americans have doctor-diagnosed arthritis,
and the Centers for Disease Control and Prevention (CDC) estimates
that with the aging U.S. population 67 million adults could be
affected by 2030. Arthritis is also the most common cause of
disability in the U.S.—limiting activity for 19 million individuals
and inhibiting employment for nearly 8 million working-age Americans.
According to prior studies, arthritis accounts for 44 million
outpatient visits, roughly 1 million hospitalizations, and more than
$128 billion in medical expenses and lost earnings in the U.S.
annually.

In the present study, Sylvia Furner, MPH, PhD, of the School of Public
Health at the University of Illinois at Chicago and colleagues at CDC
analyzed data from the Behavioral Risk Factor Surveillance System
(BRFSS) to compare HRQOL in U.S. adults with and without arthritis.
BRFSS is a telephone survey used by state health departments and CDC
to collect HRQOL, demographic, and behavioral risk factor information
from a representative sample of U.S. adults 18 years of age and older.
Questions related to arthritis are included in the annual survey in
odd years, and the current study used data from 2003, 2005, 2007.

More than 1 million respondents were included in the analysis during
the 3-year study period. Researchers found 27% of survey respondents
with arthritis reported fair or poor health compared to 12% of those
without arthritis. The mean number of physically unhealthy days (7
vs.3), mentally unhealthy days (5 vs.3), total unhealthy days (10
vs.5), and activity-limited days (4 vs.1) was greater for individuals
with arthritis than for those without. Additionally, those with
arthritis who experienced limitations to normal activities reported
poorer HRQOL than individuals without arthritis-related restrictions.

“Our analysis showed that the values for all five measures of HRQOL
were 2-3 times worse in those with arthritis compared to those
without,” said Dr. Furner. HRQOL measures used for analysis were
demographics (age, gender, race), social factors (education, income,
employment), healthcare factors (access to care, cost barrier to
care), health behaviors (physical activity, smoking status, alcohol
consumption), and health conditions (diabetes, hypertension, body mass
index). Having low family income, being unable to work, cost being a
barrier to care, and having diabetes were all strongly associated with
poor HRQOL.

Individuals who were physically active had significantly better HRQOL
compared with those who were inactive. Furthermore, those who had
arthritis and remained physically active were less likely to report
fair or poor health. “Given the projected high prevalence of
arthritis in the U.S. interventions should address both physical
health and mental health,” concluded Dr. Furner. “Increasing physical
activity, reducing co-morbidities, and increasing access to healthcare
could improve the quality of life for adults with arthritis.”

Full Citation: “Health-Related Quality of Life of U.S. Adults with
Arthritis: Analysis of Data from the Behavioral Risk Factor
Surveillance System, 2003, 2005, and 2007.” Sylvia E. Furner,
Jennifer M. Hootman, Charles G. Helmick, Julie Bolen, Matthew M. Zack.
Arthritis Care and Research; Published Online: April 28, 2011 (DOI:
10.1002/acr.20430).

Source:

Wiley-Blackwell



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Tofacitinib Effective In Helping Rheumatoid Arthritis Patients, Trial Results Find

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Main Category: Arthritis / Rheumatology
Article Date: 29 Apr 2011 – 11:00 PDT

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Adding Tofacitinib to standard treatment has been shown to be more effective than standard rheumatoid arthritis treatment alone, according to top-line results of two Phase 3 Trials, pharmaceutical giant Pfizer announced. The company says results details will be presented at a future scientific meeting.

The two trials were called ORAL Standard and ORAL Step.

The Oral Standard 12-month trial involved 717 patients with moderate-severe rheumatoid arthritis (RA) symptoms who did not respond properly to methotrexate – they were randomly selected to receive either tofacitinib 5 or 10 mg twice a day, adalimumab 40 mg subcutaneously every two weeks or a placebo – in both cases the patient was also on standard methotrexate therapy. The study met all primary endpoints (main goals), demonstrating considerable changes compared to placebo in alleviating RA signs and symptoms.

The Oral Step 6-month trial involved 399 patients with moderate-severe RA who had not responded properly to a TNF inhibitor. They were randomly selected to receive either tofacitinib 5 or 10 mg twice a day or a placebo, – in both cases the patient was also on standard methotrexate therapy. This study also met all its primary endpoints.

Neither of the two trials reported any new safety signals. Safety and efficacy data regarding tofacitinib in both studies are no different from what was reported in previous studies.

Rheumatoid Arthritis

Rheumatoid arthritis, also known as rheumatoid disease is a long-lasting (chronic), disabling and progressive autoimmune disease. The patient experiences swelling and pain in the joints, inflammation and pain in the tissue surrounding joints, as well as other organs. In most cases, signs and symptoms appear initially in the hands and feet – however, any joint might be affected. Patients typically feel tired and generally unwell, and have stiff joints.

Rheumatoid arthritis is a systemic illness – it affects the whole body – often multiple organs may have symptoms. There may be fever, extreme fatigue, the inflammation can spread into the lungs and the pleura (membrane around the lungs, the pericardium and the sclera (the white outer coat of the eyeball). There may also be nodular lesions under the skin.

Rheumatoid arthritis is much more common in women than in men. It is much more common in smokers. The John Hopkins Arthritis Center, USA, says that about 1% to 2% of people worldwide are affected by RA. Nearly 5% of females aged at least 55 years have RA. In the USA, 70 people in every 100,000 has RA.

Industry experts say that Pfizer would like tofacitinib to become an oral alternative to existing injected or intravenous medications, including Humira (Abbot Laboratories). Tofacitinib could generate sales up to $2 billion. Pfizer hopes tofacitinib will make up for the expected loss in revenue when generic competition for Lipitor arrives at the end of this year.

Sources: Pfizer

Written by Christian Nordqvist


Copyright: Medical News Today

Not to be reproduced without permission of Medical News Today



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Sulindac for RA

posted by Andrew on 29 Apr 2011 at 2:58 pm

I am a 66 year old male with RA and a family history of RA. My father had crippling RA of the hip. I have RA in the hands, feet and lower back.

I get complete relief from RA pain if I take 400 mg of Sulindac every 30 hours (to avoid itching). It has the added benefit of improving discomfort from COPD. It also significantly reduces risk of colon cancer, and research suggests, other cancers, too. I also have a family history of colon cancer. In addition, I also wear magnetic jewelry on my ankle, wrist and neck.

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Celebrating 12 years of hope & health in Haiti

Twelve years ago, TriMedx volunteers responded to a plea by Sister Martha Barlai-Kovach of CRUDEM, relaying the urgent need for working medical equipment at Hôpital Sacré Coeur in Milot, Haiti. It was then, in 1999, that our mission of hope began. Without working medical equipment, mission hospitals like Hôpital Sacré Coeur lack the tools to perform some of the most basic life-saving procedures.

And so in 2004 the TriMedx Foundation was formed to meet this need around the world. Since then, TriMedx Foundation has been a primary resource to Hôpital Sacré Coeur in providing healthcare equipment, technology training and support.

In 2011, we’re launching monthly training trips to both Hôpital Sacré Coeur and St. Boniface Hospital in Haiti. Having impacted more than one million lives to date, our goal remains to equip poverty-stricken communities to safeguard the health of its families, long after we’re gone.

We invite you to celebrate with us by taking a moment to view a three-minute preview of “Angels of Milot: Haiti’s Aftershock” above–a PBS documentary highlighting the lives impacted at Hôpital Sacré Coeur. It is through support given to TriMedx Foundation that we are able to equip medical missions like Hôpital Sacré Coeur, ensuring lives are saved through vital medical equipment.

We thank you for your time and support, and wish you a blessed 2011.

Warm regards,

Mary OwensMary Owens
Development Director
TriMedx Foundation
mary.owens@trimedx.com

Buy Recertified Chemistry Analyzers

Buying recertified chemistry analyzers are an economical option for laboratories as they offer accurate results.

Chemistry analyzers are indispensable when it comes to tests for a variety of routine chemistry analytes. Buying recertified chemistry analyzers are an economical option for laboratories as they offer accurate results while costing just a fraction of the price of new equipment.

Recertified Models Chemistry Analyzers – Points to Consider

Chemistry analyzers perform tests for analytes like bilirubin, magnesium, albumin, creatinine, calcium, uric acid, inorganic phosphorus, urea nitrogen (bun), glucose, and iron. They also provide assays for analytics such as thyroid, therapeutic drug, lipid, electrolyte, drugs of abuse, and so on. Labs that plan on buying recertified models should bear the following points in mind:

Costs and Features – To compare the costs and features of different models, visit the online stores of leading dealers in lab equipment. This will help you choose the product that would matches your needs and budget.

Some of the features that you should be looking for include closed tube sampling, auto repeat and dilution, positive sample and reagent ID, and on-board sample and reagent refrigeration. It is necessary to buy a model that offers maximum uptime, broad testing potentiality, low cost, and minimal maintenance.

Dealers – Reliable dealers offer good brands as well as efficient after-sales support. The refurbished equipment that they supply is inspected, disassembled, repair and recertified to original manufacturer specifications.

Benefits – It is also necessary to ensure that the equipment comes with benefits like:

  • Service contracts
  • Extended warranty
  • Competitive pricing
  • On time delivery
  • Material service visits
  • Minimal maintenance

Quality – Reliability and accuracy of test results are some of the important factors for chemistry analytical procedures. For this, your labs should be equipped with premium quality analyzers. Therefore, it is important to consider recertified models of chemistry analyzers from industry leaders like Alfa Wassermann, Roche Diagnostics, Siemens Medical Solutions Diagnostics and Beckman.

FDA Approves Updated, Clarified Indication For Use For IFuse Implant System®

Main Category: Arthritis / Rheumatology
Also Included In: Regulatory Affairs / Drug Approvals;  Medical Devices / Diagnostics
Article Date: 28 Apr 2011 – 0:00 PDT

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SI-BONE, Inc. (San Jose, California), a medical device company that is pioneering the use of a minimally invasive surgical (MIS) device to treat the sacroiliac (SI) joint announced the U.S. Food and Drug Administration (FDA) approved a major modification to the existing product label. The Approval targets the use of iFuse Implant System® for sacroiliac joint fusion for conditions including sacroiliac joint disruptions and degenerative sacroiliitis.

In the spirit of collaboration, FDA-OSDB worked with SI-BONE, Inc. to arrive at a more accurate description of the intended use of the iFuse System. The communications were helpful in differentiating the iFuse System from fracture fixation devices. Based upon internal discussions, as well as a review of the medical literature related to SI joint disease and associated clinical care, FDA agreed to remove “fracture” from the indications for use and to further modify the indications for use statement as follows: “The SI Joint Fusion System is intended for sacroiliac joint fusion for conditions including sacroiliac joint disruptions and degenerative sacroiliitis, as the Agency believed this is more in line with the true intent of SI Joint Fusion System.”

Commenting on the FDA approval of SI-BONE’s 510(K), CEO, Jeff Dunn said, “This approval from the Agency provides us with a significant advantage in getting the word out on appropriate diagnosis of low back complaints that include the SI joint and that an MIS option for patients with SI joint problems and provides us with a unique opportunity to teach spine surgeons about the iFuse Implant System for SI joint fixation/fusion.”

Barbara Bunger, Vice President, Clinical, Regulatory and Quality at SI-BONE stated, “It’s important for companies, like SI-BONE, Inc., to work closely with the FDA in developing solutions for patients with low back complaints due to the SI joint and the company looks forward to further collaborations and discussions with the Agency as the clinical development plan progresses. Our working relationship will ensure the design of a pivotal study that will provide clinical data to support low back pain claims.”

SI-BONE received clearance in November 2008 from the Food and Drug Administration (FDA) to market its iFuse Implant System. The CE mark for European commercialization was obtained in November 2010. The iFuse provides immediate post-operative fixation, accomplishing the goal of traditional open SI joint fusion through an MIS approach. Clinical publications have identified the SI joint as a pain generator for up to 22% of low back pain patients and that up to 75% of post-lumbar fusion patients develop SI joint degeneration within 5 years of surgery. These represent significant unmet clinical needs where iFuse may provide an MIS option.

In response to increasing awareness of SI joint disruption and dysfunction as debilitating symptom generators, SI-BONE, Inc. developed an innovative, patented, intramedullary implant to treat the SI joint. The company is also embarking on a post-market multicenter study to determine its effect over time on SI joint pathology and on symptoms associated with SI joint problems.

Source: SI-BONE, Inc



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Pfizer’s Tofacitinib Takes Next Step To Combat Arthritis

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Main Category: Arthritis / Rheumatology
Also Included In: Regulatory Affairs / Drug Approvals
Article Date: 28 Apr 2011 – 9:00 PDT

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4.5 (2 votes)

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Rheumatoid arthritis (RA) is a chronic inflammatory autoimmune disease that typically affects the hands and feet, although any joint lined by a synovial membrane may be affected. Now Pfizer has announced progress for their drug tofacitinib. Tofacitinib is a unique, oral Janus kinase (JAK) inhibitor that is being investigated as a targeted immunomodulator and disease-modifying therapy for RA.

More than 4,000 RA patients have been treated with tofacitinib in clinical trials to date. RA affects approximately 1.3 million people in the U.S. and one percent of the adult population worldwide.

The Janus kinase family is one of ten recognized families of non-receptor tyrosine kinases. Mammals have four members of this family, Jak1, Jak2, Jak3 and Tyrosine kinase 2 (Tyk2).

Each protein has a kinase domain and a catalytically inactive pseudo-kinase domain, and they each bind cytokine receptors through amino-terminal FERM (Band-4.1, ezrin, radixin, moesin) domains. Upon binding of cytokines to their receptors, Jaks are activated and phosphorylate the receptors, creating docking sites for signaling molecules, especially members of the signal transducer and activator of transcription family. Mutations of the Drosophila Jak (Hopscotch) have revealed developmental defects, and constitutive activation of Jaks in flies and humans is associated with leukemia-like syndromes.

The new study (ORAL Standard) is a completed twelve-month study in patients with moderate-to-severe active rheumatoid arthritis who had an inadequate response to methotrexate (MTX) and were randomized to receive either tofacitinib, adalimumab every other week or placebo, each of which was added to stable background MTX.

The ORAL Step study met all primary endpoints at the 5 and 10 mg BID doses and no new safety signals emerged in the ORAL Standard and ORAL Step studies. The efficacy and safety profile of tofacitinib in these studies remains consistent with that seen previously in the clinical program.

The joints most commonly affected by rheumatoid arthritis are those of the hands, feet, wrists, knees, elbows, knees and ankles. Joint involvement is usually symmetrical, meaning if one joint is affected the same joint on the opposite side of the body is affected as well. The disease can also affect many organs, including the skin, heart, blood vessels and lungs.

Although rheumatoid arthritis is chronic, its symptoms can come and go. Periods of mild disease activity can be punctuated by flares, or periods or more intense disease activity and symptoms. In some cases, with appropriate treatment, the disease may become inactive and symptoms may go away completely.

Unlike more recent therapies for RA, which are directed at extracellular targets such as pro-inflammatory cytokines, tofacitinib takes a novel approach, targeting the intracellular signaling pathways that operate as hubs in the inflammatory cytokine network.

Pfizer is studying tofacitinib for RA in the Phase 3 ORAL program, which consists of five pivotal trials and a sixth long-term treatment study at more than 350 locations in 35 countries worldwide. ORAL Standard and ORAL Step are the final two pivotal trials in the program.

Pfizer is also studying orally administered tofacitinib in psoriasis, inflammatory bowel disease (Crohn’s disease and ulcerative colitis) and renal transplant, and topical tofacitinib in both psoriasis and dry eye disease.

Sources: Genome Biology, Arthritis Today and Pfizer

Written by Sy Kraft

Copyright: Medical News Today

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Administration Implements Affordable Care Act Provision To Improve Care, Lower Costs

Main Category: Medicare / Medicaid / SCHIP
Article Date: 29 Apr 2011 – 8:00 PDT

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The Department of Health and Human Services (HHS) has launched a new initiative which will reward hospitals for the quality of care they provide to people with Medicare and help reduce health care costs. Authorized by the Affordable Care Act, the Hospital Value-Based Purchasing program marks the beginning of an historic change in how Medicare pays health care providers and facilities-for the first time, 3,500 hospitals across the country will be paid for inpatient acute care services based on care quality, not just the quantity of the services they provide.

This initiative helps support the goals of the Partnership for Patients, a new public-private partnership that will help improve the quality, safety and affordability of health care for all Americans. The Partnership for Patients has the potential over the next three years to save 60,000 lives and save up to $35 billion in U.S. health care costs, including up to $10 billion for Medicare. Over the next ten years, the Partnership for Patients could reduce costs to Medicare by about $50 billion and result in billions more in Medicaid savings.

“Changing the way we pay hospitals will improve the quality of care for seniors and save money for all of us,” said HHS Secretary Kathleen Sebelius. “Under this initiative, Medicare will reward hospitals that provide high-quality care and keep their patients healthy. It’s an important part of our work to improve the health of our nation and drive down costs. As hospitals work to improve their performance on these measures, all patients – not just Medicare patients – will benefit.”

In FY 2013, an estimated $850 million will be allocated to hospitals based on their overall performance on a set of quality measures that have been shown to improve clinical processes of care and patient satisfaction. This funding will be taken from what Medicare otherwise would have spent, and the size of the fund will gradually increase over time, resulting in a shift from payments based on volume to payments based on performance.

“Medicare is in a unique position to reward hospitals for improving the quality of care they provide,” said Centers for Medicare Medicaid (CMS) Administrator Donald Berwick, M.D. “Under this new initiative, we will reward hospitals for delivering high-quality care, treating their patients with respect and compassion, and ensuring they have the opportunity to participate in decisions about their treatment.”

Some of these measures will assess whether hospitals:

– Ensure that patients who may have had a heart attack receive care within 90 minutes;

– Provide care within a 24-hour window to surgery patients to prevent blood clots;

– Communicate discharge instructions to heart failure patients; and


– Ensure hospital facilities are clean and well maintained.

The measures to determine quality in the Hospital Value-Based Purchasing Program focus on how closely hospitals follow best clinical practices and how well hospitals enhance patients’ experiences of care. When hospitals follow these types of proven best practices, patients receive higher quality care and see better outcomes. And helping patients heal without complication can improve health and ultimately reduce health care costs. For example, ensuring heart failure patients receive clear instructions when they are discharged on their medications and other follow-up activities reduces the likelihood that they will suffer a preventable complication that would require them to be readmitted to the hospital.

The better a hospital does on its quality measures, the greater the reward it will receive from Medicare. The measures selected for the Hospital Value-Based Purchasing program in FY 2013 have been endorsed by national bodies of experts, including the National Quality Forum. Hospitals have been reporting on quality measures through the Hospital Inpatient Quality Reporting Program since 2004, and that information is posted on the Hospital Compare website. For a complete list of quality measures, visit here.

In the future, CMS plans to add additional measures that focus on improved patient outcomes and prevention of hospital-acquired conditions. Measures that have reached very high compliance scores would likely be replaced, continuing to raise the quality bar.

The Hospital Value-Based Purchasing initiative is just one part of a wide-ranging effort by the Obama Administration to improve the quality of health care for all Americans, using important new tools provided by the Affordable Care Act. The Partnership for Patients is bringing together hospitals, doctors, nurses, pharmacists, employers, unions, and state and federal government committed to keeping patients from getting injured or sicker in the health care system and improving transitions between care settings. CMS will invest up to $1 billion to help drive these changes. In addition, proposed rules allowing Medicare to pay new Accountable Care Organizations (ACOs) to improve coordination of patient care are also expected to result in better care and lower costs.

For a fact sheet on the Hospital Value-Based Purchasing program, visit here. To learn more about Hospital Value-based Purchasing, please visit here.

The final rule establishing the program was placed on display at the Federal Register today.

Source:

HHS



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Canadian Doctors For Medicare: Tory Silence On Medicare Pledge “Deafening”

Main Category: Medicare / Medicaid / SCHIP
Article Date: 29 Apr 2011 – 10:00 PDT

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Stephen Harper’s decision to refuse even the most basic commitment to Medicare has caused surprise and concern among Canadians who care about our health care system. Hundreds of local candidates representing the Liberal, New Democratic and Green Parties, and all three of their National Leaders, have given their support to the Health Care Protection Pledge, a commitment to sustain Medicare past the 2014 Health Accord negotiations. Stephen Harper is the only national leader who has chosen not to express support for our health care system, and all but two Conservative candidates have followed his lead, almost universally refusing to make a commitment to Medicare.

The Health Care Protection Pledge, put forward by the physicians’ group Canadian Doctors for Medicare, asked candidates to make a simple promise: enforce the current health care laws and sustain at least some health care transfer payment to provinces. “We deliberately set the bar low, seeking only the most basic assurances about our health care system” said Dr. Danielle Martin, Chair of Canadian Doctors for Medicare. “We are very disappointed to see the Conservatives decline even this minimal commitment.”

The Pledge was circulated to all campaign offices and Party Headquarters earlier in the election period. Staff at Canadian Doctors for Medicare reached out to the candidates and their leaders to confirm commitments. Canadian Doctors for Medicare contacted Conservative Campaign Headquarters repeatedly, speaking with staff about the Pledge, responding to their requests for additional information and continuing to seek a commitment. Every Conservative campaign office, from coast to coast to coast, was also contacted, repeatedly, by phone and email, pursuing support for our health care system. Sadly, only two Conservative in Canada chose to make the Pledge and no commitment could be obtained from Stephen Harper. In contrast, candidates from other parties were eager to express support, faxing and emailing Pledges from across the country, working around power outages and internet failures to make sure their Pledges were received.

“It’s been invigorating to see the enthusiasm for our health care system from the candidates and their leaders”, Dr. Martin added, “But we’re sorry to see our hopes for universal commitment to our heath care system won’t be achieved in this election.”

Source:

Canadian Doctors for Medicare



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Waiting for the storm to hit

I know the whole “calm before the storm” thing is a little cliché.  Sorry.  It just really seems to fit how I feel.  So I’ll just get it over with and say that I’m in the calm before the storm. 

I’m now on my full zofran regime.  I had to start that yesterday at work.  8 mg every 6 hours.  I’m not waking to take it through the night.  Yet. 

I’m becoming a slave to the clock.

5:45 AM: stick zofran in mouth and lay back down.

7:00 AM: multivitamin, ginger, unisom/B6, colace, pepcid, folic acid

10:00 AM: unisom/B6, ginger

12:00 PM: zofran, colace, ginger

1:00 PM: unisom/B6

3:00 PM: unisom/B6

6:00 PM: unisom/B6, zofran, colace, ginger

9:00 PM: unisom/B6, folic Acid, pepcid, sleep

So far, I’ve been trying to keep track of all of that in my head.  It’s pretty hard to do.

I’ve had tiny waves of nausea breaking through here and there.  Teeny, tiny nausea.  Not enough to make me need to sit down, but enough to let me know it’s there.  Enough that this morning, I started coughing that very special cough in the shower.  That cough that’s less of a cough and more of a gag.  A few times I’ve thought I needed to burp, but it’s only a gag.

Mostly, I feel pretty reasonable, but I can tell when it’s time to take a med again.  That’s when the monster gives me a little lick on the back of the neck just to let me know it’s there and waiting.

I’ve been doing a whole lot of eating.  Right now, the eating helps keep those tiny prickles of nausea away.  I’m eating all the things I won’t be able to eat later on.  Last night Juan surpised me with raqulette!  It was like a mini-celebration.  That is a treat any time, but it’s especially a treat now.  I had onion rings and part of a burger for lunch today.  I didn’t eat much.  It didn’t make me sick, but the flavors just didn’t appeal to me.  The sweet potato fries and the pickles were pretty good, so many thanks to my friend H for letting me bogart some. 

The ptyalism kicked in again after lunch.  I’m not feeling nauseated, but I definitely just want to be a bump on a rock.  My frown is not upside down.

I wonder what my last meal will be?  Last time, it was a Chipotle burrito.  Maybe it will be a burger and onion rings.

I wonder if my “bad smell” will be the same?  Last time it was the smell of horrible rotten cottage cheese that emanated from the refrigerator.  Note: there was not any actual cottage cheese present.  Not ever.  Will it be the same?  Will I have a new smell this time?

I spoke to our HR lead yesterday.  She said to wait to tell my boss.  Employment law and disability leave is apparently pretty complicated in California.  She wants to get me all the information and come up with a communication plan before we talk to my boss.  She’ll follow up with me today or Monday to go over everything and come up with the plan.

I’ve started using the PrimaBella wristband.  It’s very weird.  I’ll probably dedicate a whole post to it later.  Let me just say now that it’s very hard to type with electrical impulses shooting down the nerves into your fingers on a 1 second cycle.

Now, I’m just trying to get through the rest of the day.  I’m feeling progressively worse.  I don’t want to drink my lovely, expensive Teavana tea that was so delicately and lovingly brewed.

I’m also waiting on my doctor to call back with yesterday’s blood draw results.  We are watching to make sure the HCG is rising appropriately.  The way I’m feeling, I’m going to bet that it is.

That’s all for now folks.  Watch my twitter feed if you’re curious about the blood results.  Feel free to follow me on twitter.  My only follower is my sister and a couple of folks who may or may not be spammers.  I don’t know.  I don’t really know how twitter works yet.  Help me to not feel lame!

The Undrugging of Annie (Part VII)

            I battled the system for proper treatment—said treatment now consisting of things like aide service, a shower chair and a tray table.  The nurse/case manager was from a religious order and I was required to call her “Sister” even though she entered my life as a nurse, not a religious.  She was appallingly ill willed but some of the aides touched my heart.  The occupational therapist was as helpful as a Nazi death camp guard, nevertheless, I got a shower chair and handheld shower.  Medicare paid $2000 for a $500 hospital bed, calling it a “necessity,” but refused to buy a $100 tray table to go with the bed, calling it a “convenience.”  I ate supper off a $2000 laptop computer.

My computer-expert friend had a disabled wife, so he understood my computer needs.  I gave him my credit card and he got me set up with proper equipment for working from a bed in the hospital.  Paul Cohen told me to go to WebMD and I began to do research.  The computer would often reduce me to tears.  My brain was too fried to enable me to follow the prompts or retrace my actions.  Robin Moore Fiscoe, my case manager, frequently was my salvation in this regard.

            Robin had been my case manager but when she moved from Transitional Living Services, I lost case management services.  Despite my repeated requests, the only accessible agency–Onondaga Case Management–would not properly evaluate me.  The lack of a case manager was significantly contributory to the suicidal conditions that put me in the hospital and, consequently, the ICU.  After I was transferred out of the ICU, Dr. Ghaly said, “You do not leave hospital without case manager.”  Two months later, Robin was returned to me by the system; she became a uniquely vital part of my recovery team.

Simply put, others talked:  Robin did.  For example, at a discharge-planning meeting, a doctor opined that maybe I should have liquids at my bedside to keep me from dehydrating.  Within a matter of days, Robin got funding from her agency and appeared in my apartment with a small refrigerator to put beside the bed.  Robin, unlike half the psychiatric industry, did not presume to know what was best for me.  She acted in service to my expressed needs.  When I said, “I need to get out of this apartment,” we worked together to make it happen.

            If moving is bad, then planning and executing a move from a hospital bed is so far beyond bad that it’s off the badness scale but we accomplished it.  I moved from a dark, wheelchair-inaccessible, four-room apartment to a bright efficiency apartment on the 21st floor of an eldercare residence, Loretto’s Bernardine Apartments.  Dr. Ghaly said plaintively, “Why you go to eldercare?  Is for dying.”  I was dying and I knew it, even if Dr. Ghaly wasn’t inclined to accept it.

Doctors gave a quick glance at my blood work and pronounced it normal.  I charted a year’s worth of blood tests and saw the numbers creep slowly out to the edges of normal.  At the existing rate of default, thirty percent of my blood work would be abnormal in ninety days.  My nighttime oxygen level, unsupported, had dropped from 84% to 57%.  If I sat upright for more than an hour, I would start to yawn, that is, gasp for air.  I had to take naps every two or three hours.  I was tired to death.

            Although I still had poor gut function—I was excreting lettuce that was still green—the diarrhea had stopped.  It had been caused by the HCTZ that was lately being prescribed by the doctor who demanded that I have a colonoscopy.  Without the drugs to treat the nephrogenic diabetes insipidus, I followed the advice that doctors had unwittingly been giving me for a decade:  “Drink to your thirst.”  I drank a gallon and a half of liquid every day and urinated every two hours, day and night—but I no longer had diarrhea and it wasn’t costing the taxpayer’s $10,000 a year for drugs.

            I am a Sagittarius, a fire sign:  I need air to live.  I had fought with the FAA to get a pilot’s license despite my psychiatric history.  My late fiancée was a fighter pilot.  On June 17, 2002, I moved to the 21st floor of the eldercare residence and my hospital bed was placed beside a tall, double window.  My life in the sky began.  My “front yard” gave onto a view of thirty square miles.  My spirit returned to life in the world, even as my body retired to the old folks’ home.

            The view from the wide windows, and the softness of the spring air coming in the windows, filled me with so much happiness that I quit taking Ativan.  I had been taking 2 mg at bedtime for insomnia for several years, and occasionally taking it during the day on an as-needed basis.  What combination of blindness and ignorance had kept me taking the Ativan when I stopped all the other medications, I do not know, but now the combination of gentle breezes across my bed and birdsong at morning so pleased me that I gave up the Ativan.  I did not know that it was a benzodiazipine, a narcotic, and that I was addicted to it.  I found out the hard way.

            When I stopped taking it, I would sleep for twenty or thirty minutes, then wake up in crisis so severe that I would call 911 and be ambulanced to the hospital, where they would repeatedly tell me there was nothing wrong.  I couldn’t eat or sleep; my blood pressure was through the roof; I was sweating and having trouble breathing.  I went to the primary care doctor every other day and the Emergency Room every other night.

When I took the Ativan, I became devastatingly depressed and, in the early dawn, I would have terrible, terrifying sinking spells.  It felt like low blood pressure or low blood sugar, yet it was neither of these.  I knew, with every fiber of my being, that during those dark nights some unknown substance was falling to a level so low as to be unable to sustain life.  I was near death.  The doctors ignored me.  (To be continued)