Rest in Peace, Danita
In the past year, three people I knew of passed away due to causes related to Rheumatoid disease. We’ve known for a long time that statistics on rheumatoid related deaths are under-reported because the disease is often not mentioned in death records. But statistics are not the point of this post. It is about one individual, Danita aka “Dee.”
Over the last month, since Danita’s death, some of her friends with RA have talked about ways to honor her memory. The following is a letter composed by two of her friends, Ericka and Heather. There are a lot of questions in the letter. My purpose in bringing this to you is the same as that of the friends writing it: express love and grief for a young woman and help prevent someone else from suffering her fate.
It was said that a blood clot in Dee’s foot may have led to her death. She had complained that it was painful. The following letter contains the experiences, feelings, and concerns of two friends about the loss of someone they cared for. It is not meant to point blame at any particular source. Yet, as patients, caregivers, advocates, and policy makers, we should consider what we could do to prevent such a circumstance from occurring again.
“Like any other RA patient – she needed support”
To know her was to love her. If you didn’t know Dee, you probably thought she was a bit, well… dare I say, negative?
We knew her well; we shared her pain. We met through Twitter, and mutual friends. She lived a tough life, but she always had time for laughter. When you talked to her on the phone, her personality shined through and you got to know the part of her that you couldn’t see online. Her child was her life and if you didn’t know that about her then you didn’t know her very well at all. These were the things we shared together in our long talks.
Diagnosed at a young age, Dee didn’t necessarily respect her disease in the early stages due to a lack of understanding about RA and its effects. For her, the respect came quickly as the relentless disease continued. She was a victim of Katrina, having to be literally carried out of her home because she couldn’t walk out on her own due to her immobility. Eventually, she relocated to Atlanta, where she lived with her mom. Her mother was her main caregiver, but her mother also worked outside the home. During these long hours alone, she loved to communicate with friends and family – and like any other RA patient – she needed support.
She endured a total of nine surgeries, one of which was a bad hip replacement, which she never seemed to get any relief from. She mainly used her wheelchair to get around, even at home. She was dependent on her mom and daughter (who didn’t live with her) to get her the things she needed, necessity items like food and clothing, but also to take her to her doctor visits. Sometimes she had a nurse come in, during the last few months of her life she also had a physical therapist (PT) coming to her home.
We don’t recall the actual date, but sometime around September, a new attitude emerged in Dee. She became determined to get back on her feet and attend her daughter’s graduation. According to Dee, the PT was really working her legs, to a point that left her in tears as often as the PT came. She agreed to have a conversation with the PT and her doctor to make sure she was working the proper areas and to not end up in severe pain.
Dee’s rheumatologist had switched her from Enbrel, to Humira and then to Cimzia in a very short time frame. Methotrexate was no longer used, and for a while, neither was prednisone. By late November, she had decided to get back on prednisone to help her strength and give her some ability to accomplish the goals she had set. She was excited.
During December, something changed. Although we didn’t hear from Dee as often when her daughter was staying with her, we were still in constant communication. On December 12th, I received a message from her that read, “I’ve been in pain, my PT was hard on my leg, that bible verse I use to say it daily, this too shall pass…I tweeted that”. Another message, to another friend she said that she thought she’d had a slight stroke. The friend explained the signs and symptoms and made sure that she promised to seek medical attention. As far as we know, she did just that and went to see a neurologist, who sent her home.
Why would they send her home and not admit her? She may have been past the time frame to reverse any damage, but observation at the least would’ve been the proper thing to do we thought because this is what happened with the other friend she spoke with. At this point, things got a little confusing. She explained to me that she had gone to a new doctor, and that a nurse at the new doctor’s office outright said to her “We don’t give pain medications here!” to which she replied something along the lines of “Do you think that’s what I’m here for?” She was genuinely hurt by this, as if she was just a junky looking for meds. This doctor also informed her that she was “obese” and while she knew she was overweight, it’s a common problem for those of us affected by the disease and its medicinal side effects.
At the very least Dee was disheartened by the way she felt she was treated, at worst she was deep down angry. She knew she had excess weight, she felt like she was working on that with the PT to gain some mobility back. She also knew she had uterine fibroids, which she felt contributed to the weight & bloating, but she seemed to lack the confidence in her ability to find a doctor that would help her resolve it using newer, laser technology.
Dee called the day before she passed away. She never mentioned pain that day; she was rather peaceful and calm. She did say that she wouldn’t call 911 for anything. (Previous encounters had resulted in someone questioning why she didn’t get out of bed.) At the time, it seemed as if she were just joking, since she seemed to be rather calm and hadn’t mentioned stroke, pain, or any other problems. At the end of our conversation, we both agreed it was “nap time” and we laughed, each saying we loved each other. We ended with laughter; it’s the last time I’d hear her laugh.
Those of us that are left with the memory of Dee, continue to wonder how it’s possible that a woman in her 30’s could be so quickly taken away from us. We wonder why she wasn’t taken seriously, why her cries for help went unheeded. Why were her meds switched so quickly? Why would anyone, knowing her condition, presume that she was visiting a doctor just for pain meds? Why did the PT push her so hard, after she said no more? Why would any medical professional, knowing the severity of her problems, question the fact that she couldn’t get out of bed? Why was it that in her “home” state, she felt like she had great care? With the severity of her condition, she seemed to be brushed off by too many. We wonder if the color of her skin or the fact that she was a woman plays a role in this. We’d like to think that’s not the case, but we’ll never really know.
Rest in peace, our friend. You’ve left a mark on our hearts and souls. We were blessed with your friendship and laughter, and we’re better people because of you. We hope your death will not be in vain, that someone can avoid going through the same by reading your story.
Memorial project
The Rheumatoid Patient Foundation is setting up a memorial platform to honor loved ones who passed away because of causes related to Rheumatoid disease. Members of my family and I will be honoring my own grandfather via this platform. If you are interested in participating and you would like to be sent the link so you can honor a loved one, please send an email to memorials@rheum4us.org and put “Memorial” in the subject line.
Recommended reading:
- The Mortality Dragon: Do Rheumatoid Arthritis Patients Have to Die Early?
- Death by Rheumatoid Arthritis: Possible and Preventable
- Problems with Preventive Care and Rheumatoid Arthritis Mortality
she will be missed
I have been following this blog (probably) for well over a year now, in silence. Mostly, concerned that I would probably seem like a weirdo, without a formal diagnosis. But, I REALLY felt like saying something.
I started showing sudden, severe signs of an inflammatory arthritis in Sept 2011, although my anti-CCP and RF were negative (ESR elevated). I have not had any updated tests since that time. I spent many months taking handfuls of OTC pain medicine and riding on the hopes that a mobile clinic (my only source of medical care) would eventually help me. Mid to late spring of 2012, I eventually reached the point when those handfuls of OTC meds did nothing, I had great difficulty getting in and out of the seated position, and could stand or walk for only short periods of time. I distinctly remember asking the doctor at the clinic for a stronger anti-inflammatory medicine than I could get OTC. Her first response was, “We don’t prescribe narcotics.” Of course, I explained to her that I didn’t ask for a narcotic, I asked for a stronger anti-inflammatory to help reduce the inflammation in most of my joints. I have been on a 24/7 dosing schedule of Diclofenac and Tramadol.
I dread the days when I have to go back for a new prescription. I’m not living a pain-free existence, but it’s better than feeling like every joint in my body is on fire. At any point, they could just say “no,” since asking specifically for something to reduce inflammation sounds a lot like “drug-seeking.” I also loathe the “blame game” that I hear. They would be more than happy to give me a referral to someone in another part of the state, but “you said you can’t get there.” I guess it’s hard to believe in this day an age that someone doesn’t have a car, doesn’t have someone in their life that has a car (and is willing to help), or the money for a bus or train to another part of the state to get help. Apparently, it’s also my fault that the one clinic that has a Rheum-doc, also does not accept uninsured patients from my part of the city.
It’s also part of the “blame game” when the Medical Assistant says you should eat some anti-inflammatory foods, don’t eat food with all the spices and get a little exercise. It’s a convenient excuse for a woman who has been quite large all her life. My highest 309lbs in 2010. When I first became ill, I was between 270-280lbs, and ~263lbs when my mobility became severely impacted. Now, 221 lbs, but I’m still very overweight…so who cares. Even months of exercise videos and eating better didn’t get me in my Size 16 goal jeans, but this did. My hairline is steadily creeping further from my forehead, because my hair is falling out in clumps. I applied for disability, because I haven’t found another option. But, we know how that goes, I’m waiting for a denial any minute now.
My point? Other than being super-cathartic to say something, I can somewhat relate. It hurts me deeply to read this. I have seen many comments and stories here regarding the garbage patients are dealing with. Once upon a time, I prayed for insurance or a Rheum-doc. At the end of the day, it’s a horrible roll of the dice to find appropriate treatment, no matter what our individual situations are.
Natasha, I just want to assure you that you do NOT sound like a weirdo. I hope the catharsis of writing has helped, at least a little bit.
I hope you find someone who will listen.
Danita had a bad hip replacement that did not reduce her pain or increase her functioning. I wonder if that was reported to FDA as an adverse event? Was it a failed metal-on-metal hip (sold to young patients) that is now in class action litigation because of metal poisoning? It is unfortunate that she was exposed to unproven medical over treatment that caused harm during a time that she needed comfort and care. My blog is Failed Implanted Device Alliance. Could we be allies?
Joleen, Danita has a child, maybe someone could help her child with the possibility of this lawsuit???
There was a fund set up by Dee’s cousin and posted on FB, but I was being very careful to not risk their privacy by posting that or their last name or the obituary. If someone wants to contribute, I can send them the info on the fund to help her daughter. I have not heard that they want to sue anyone at this time.
This is such a sad story. Dee sounds like a really sweet person overwhelmed by this awful disease and without an ally to do battle with the medical establishment. I am sure that being a woman of color had some impact. My PCP, who is otherwise a good doc, once told me that I should avoid painkillers at all costs. Once on narcotics, he said, it’s all down hill from there. I wondered if he would have the same confident opinion if he hurt as much as some of us do when the disease is raging in our bodies. My rheumy has new people on his staff and they are not pleasant. At my next appt. we will discuss this and my considering finding another doc with a more supportive staff. If you don’t tell them you’re being treated poorly by staff who suggest you are drug seeking, for example, they can’t call them to task. If they aren’t supporting you, find another doc. You can also complain to the medical board. If we all refuse to be treated badly, someone will have to make some changes.
Thank you for sharing Alice. You bring up important points. I’ve had doctors say those things to me too and read hundreds of notes from other patients who hear comments like that – of course you are right that we need to resist being treated poorly so that changes will be made. But it’s also so hard to fight that on top of this powerful illness. I can see some reasons that Dee might have begun to feel powerless – that’s just my guess hearing how she felt about 911 etc.
I am so sorry to hear about Dee and so frustrated to the point of angry because I see the same kind of thing from doctors. Why didn’t anyone care about Dee? How could anyone let her fall between the cracks? If you are female and fat you are also stupid, this according to the lack of respect with which I myself have been treated. Automatically, with one look, you have already been dismissed. The appointment now merely a formality. Even when taking my daughter to her appts, her doctors treat me that way, as well. It is so frustrating. Why do people who aren’t dealing with a weight problem assume that fat people are too stupid to care, too stupid to know why they are fat? Why do they dismiss the entire person because of one problem? For many of us, our weight issues are not simply a matter of physiology, but rather a symptom, an extension of emotional, psychological problems. Everyone has problems, and many of them much more severe and life changing and probably embarrassing but they can hide theirs under the rug. Overweight people can not hide – our problem is the one that can be immediately seen and therefore judged. Add in a life changing illness such as RA and it’s a recipe for disaster. I know a lot of the onus is on training, and I know that it’s easy to become jaded in any profession, but the medical profession has a long way to go in fulfilling their creed – do no harm. Unfortunately, I see them heading in the opposite direction with the specter of required national healthcare looming over our heads. My heart goes out to Dee and her family. And my heart sinks in my chest as I realize, this could be me.
My mother suffered from the time she was 15 until now, she is 77 years old. She has Alzheimer’s now along with other complications from RA. I read this letter thinking of her the entire time. My mom was often told she was obese and I would always, in a rage, would tell people to mind their own business. I knew it was the RA meds and I knew that I was lucky to have her. Meds had arrested the damage, but not the pain. She knew that the meds were dangerous but she chose life over joint damage. When she started seeing her doctor at 19 (one of the first Rheumatologists in Los Angeles) she would see patients wearing gloves on their hands. The gloves kept their dissolved joints together. There were no real meds up until that time and those with RA died early with horrific joint damage. She considers herself lucky to have found meds that worked for her.
If you met her you would never know she was sick, until she walked, and now until you talked to her for a long period of time. She never let her pain show because she didn’t want people to focus on that. She hated pity for her disease, “pity doesn’t help” she would tell me. She is my hero and my role model for standing up for myself.
Everything else she suffered seemed unrelated back then, but now we know there is a connection between RA and CHF, osteoporosis, other heart problems, obesity (which is the really aggravating thing), and maybe even memory. It’s systemic and people, physicians, don’t get that! And it’s NOT osteoarthritis.
I am so lucky to have gone into remission shortly after my first flare up as an adolescent. But not everyone is that lucky. There are some who get no benefit from any of the RA meds.
Yes, the meds are dangerous, they can shorten your life. But my mother wanted quality of life, not quantity. I’m lucky (again) to have her in my life, but she’s leaving me anyway with the Alzheimer’s. You have no idea how much I miss my mom, my best friend, who – if she knew about this page – would have a lot of valuable things to say to all of us.
I’m so sorry Danita went through such an awful situation. It sounds like there is no good RA doctor where she lived. I think obesity, like with my mom, is blamed for pain and doctors think that if patients just lost the weight they would feel better. In the 80’s my mother’s weight gain was finally diagnosed as a consequence of heart failure, which even her RA doctor didn’t suspect. He cried when he realized he missed it. A LOT of people don’t understand this disease.
I’m glad you were her friends, it sounds like you gave her a lot of support and love. You were blessed to know Danita. She was blessed to have you in her life.
Why are people treated like this? If Danita had been thin, white, and rich would she have been told to just get out of bed? If she had had one failed surgery is it any wonder she was putting off having another? If she had lived through the fiasco that Katrina became, do we question why she might have had just the tiniest bit of mistrust of a 911 crew? Did she get to the point where death was welcome?
those are good questions Anne. I do not know the reasons different people might have misjudged her or failed her in some way. I do know that I’ve been treated similarly in clinics, labs, and in the ER even though I’m thin and white, so it does seem there are at least some who seem to discriminate based on ignorance of RA. A friend who is a social worker at a hospital once said she sees a drastic difference in the way people are treated once a diagnosis of RA is known – at least in her hospital’s ER. Of course for Dee, it could have been all of the above – I doubt we’ll ever know.
I’ve had this disease for almost four years. I am just now beginning to understand that people don’t get it. At first I was extremely fearful of sharing my diagnosis. My first rheumy did nothing to explain the disease or tell me where I could find information. He took 10 minutes to asses my current condition, order my labs and tell me what drug he was giving me. Where did I fit in that situation, being dictated to with no voice in my own healthcare. I spoke concerns about ability to exercise, my weight (which was creeping up), and then came the issues with my thyroid. I had no idea how everything was connected.
My family saw few changes in my daily routine and thought nothing of it. I felt frustrated and very much alone. Reading about others’ experiences with RA I realize my current situation is not nearly as bad as it could be. However, my life had changed drastically. I used to be involved in competitive sports and fitness. I used to work seven days a week. Now, if I walk without hobbling I feel I’ve accomplished something. Most of the time I’m so tired.
Dee did not deserve the treatment she got. It is unfathomable that anyone would be treated in that manner.
I am encouraged by those who share so openly about their life, fears, concerns and decision-making and how this disease impacts. I applaud your courage and hope some day I will feel confident enough to take a stand and make a difference.
Thanks, Kelly, for your blog.
my friend John Brass died of a blood clot in his foot. he was in his middle 51. having R. A. for 3 years ?? how often does this happen ? feet swelled , walked to bathroom, fell down. he lived alone and was not found till next morning. no pain meds cause he liked his beer. they called his cause of death a brain clot. not R. A. but that is what swelled his feet all the time
Kelly,
Can you elaborate on your social worker friend’s statement. Once RA is identified in a hospital situation, is a person treated better or more poorly? Does any medical professional seriously think we make this pain up in our heads?
I am blessed that my PCP is my biggest advocate. He knows me and watched me deliver without drugs. He has seen me on death’s door and sent me to be tested for Leukemia because RA jacked my up immune system. He knows that I don’t ask for pain meds. He also knows my frustration at the difficulty in finding a rheumy to treat me with more than Rx NSAIDS for sero-negative RA. Why can’t we find good Rheumys who will treat us as people and not as lab work?
I will ask her if she is willing to say more publicly. Perhaps she would write a guest post. It is something that has also come up sometimes here in the 22,000+ comments on this site.
I would also be interested in knowing whether a diagnosis of RA gets one better or worse treatment. I have papers to fill out on my desk at home for a visit with a new rheumatology clinic. The biggest, boldest, thing on the cover sheet is an announcement that they do not prescribe any sort of pain medications. I feel defeated before I even go in, and I don’t even take or want pain medication. It feels like there’s a cloud of suspicion over my head before I have even walked in the door of their office. Not a great start.
A Rheumatology clinic that does not prescribe pain medications? Don’t they realize that one of the biggest complications of RA is PAIN? Maybe that is part of the problem. The very doctors who are supposed to be specialists in our disease don’t know how to or will not treat the entire disease! So sorry for you. Good luck with your new doctor. My Rheumy clinic has strong views about refilling meds between visits or nights and weekends, etc (same thing suspicion of med seeking), but luckily for me, I already had an established relationship with a trusted Physiatrist(sp?) who understands pain. I was diagnosed with RA last year as I was trying to recover from back surgery. I was recovering and trying to start some excercise and I could not figure out why my fingers were so stiff or why I was soooo fatigued every morning. When I had a check-up with my Physiatrist, I was worried that she was going to stop all my medications since I was done with surgery. She found out about the RA and said she did not want to change a thing until my disease was under control. And contrary to what others may think is possible, as the Arava and Enbrel are starting to work, I have been able to decrease my pain meds on my own without the doctor having to limit my prescriptions. I am very lucky now that I write about it. I hope all of my fellow warriors can be as lucky.
Hi Samantha, many patients comment that their doctors do not prescribe pain medications and there are also rheum doctors who’ve publicly taken this stand against pain meds. As a matter of fact there was a document last year from some American College of Rheumatology leaders that explains that viewpoint:
“Initial treatment of moderately to severely active rheumatoid arthritis in adults”
Section Editor – James R O’Dell, MD
Deputy Editor – Paul L Romain, MD
“In addition to the medications noted above, we use analgesic medications, such as acetaminophen,
for additional pain relief if required. We avoid the use of opioids because pain can be controlled in most patients with RA
by effective use of NSAIDs, glucocorticoids, and DMARDs that control the disease process. Patients without evidence of
very significant joint injury who appear to require opioids for adequate pain relief despite good control of disease activity
should be evaluated for other comorbid conditions.”
What is interesting is that when the Institute of Medicine published a report on pain in America in 2011, there were rheumatology publications that complained that rheumatologists were not included in the report, saying they are on the front lines of pain care. Read more about that here https://www.rawarrior.com/iom-pain-report-relieving-pain-in-america-gets-mixed-reviews/
As I said, I was just diagnosed last summer, and I don’t know how anyone could even live through what I’ve been through since then without the use of something more than acetaminophen. Of course, coming off of back surgery, I had likely built up a tolerance to some medications. I also (I guess) have an extremely high anti-CCP which I understand to be associated with more severe forms of RA. The FP who initially drew my labs was shocked at how high it was and when I finally got into a rheumy, he did not believe it and had it redrawn….then invited all of his associates to come see how high it was. SO, maybe my pain progressed faster than some. I just don’t know how you can proclaim to be a compassionate physician and have a hard line against pain medications when we know that acetaminophen doesn’t cover all pain. Sounds like a set up for patients taking too much tylenol and ruining their livers…..which is a problem already with the disease treatment meds they are already on. And this wait around 2-3 months to see if a new therapy is going to work got to be unbearable at times. But I’m not just talkinng about narcotics, so much as the need for stronger anti inflammitories and probably frequently anti-depressants. Anyway…as this whole conversation started in memory of Dee and in hoping that we can prevent other people being treated the same way, I wonder if her pain was adequately controlled? It’s just tragic to me.
What a sad story. May she rest in peace with Jesus.
Let’s hope that things change for us
Dee was a truly beautiful spirit. I miss her and the light that she brought to some dark days in my life. She was going through so much but always has a kind and loving word for me. She should NEVER have experienced the disgusting and inexcusable lack of concern, care and empathy that her doctors/physical therapist should have shown her. None of us should. She shouldn’t have had to suffer so much for so long. She should not have had to live and die in that way, feeling disrespected and unheard. I accept God’s will in all things; but I know He had nothing to so with how Dee suffered. We have got to stand up for ourselves; its hard and most times it feels like we are literally banging our heads against brick wall after brick wall…we still can’t give up. I love you Danita. My life is better for having known you.
This Angel has found her Wings!
Rest In Peace Danita.
<3
This is so sad and I can relate to a lot of the judgement she received from the medical community. I have been to doctor appointments for health issues where the focus was turned to my weight – I am about 28 pounds overweight and have auto-immune thyroid disease (not to mention RA, narcolepsy, etc) and can only lose weight if I starve myself. I am here for a lump in my throat and nasal polyps, we are discussing my weight because??? I too have been presumed to be a drug addict, never mind that I worked in pharmacy for 12 years and subject to random drug testing and never mind I can barely tolerate any narcotics (or alcohol) at all without becoming violently ill. I always feel now when I go to a new doctor I am on trial – it is no longer about my health or my illnesses, it seems to be all about weight. Am I auditioning for americas next top patient?
Is this the new American healthcare system where you will only get treatment for your illness if your bmi is 25 or less?
This is ridiculously sad this beautiful lady had to die from a lack of care and concern from her healthcare providers.
I’m so sorry to read your story, Natasha. Your writing is so eloquent and well-stated. I hope that you are able to find some relief and medical assistance soon. Take care!
This is sad story and I feel sorry that a woman in her 30’s had to die like this. I strongly believe she should have been treated better. Not only on a personal level but on a medical one as well. I think the only way to bring about more understanding is through advocacy and organization.
There are patients advocates out there.Maybe we should all look into getting one. It is very hard to push for results when you dont feel good. Some of us are not good at standing up for ourselves to begin with. Im wondering if patient advocacy is something that could have helped Danita.
If I was family member of hers I would definitely request an autopsy be performed. Her family and daughter have a right to know why she died. It shouldnt be just written off. Knowledge is power.
My mother died at 37 of breast cancer. My father ordered an autopsy. I couldnt understand at the time why he did this. Now I do. We learned how strong she really was. The Doctor couldnt believe she had lived with so much cancer in her. She actually died of a heart attack but to deny that cancer caused her death would have been wrong.
I hope Danita found Peace and an end to her suffering.Its people like her that make me want to stand up and fight for better care and more understanding of this horribe disease.
This is so sad, Dee deserved better. This disease is so cruel, so misunderstood and ignored by the general public.
I’ve ignored my symptoms for 27 yrs.. I’ve gone on..I’ve pushed through …I’ve dealt with it..I guess I’v e been lucky..been upright.I was diagnosed at 22 yrs ..I”m now 47 and have ignored my disease mostly. but now..it is coming to get me. I’m so tired, and achy. I’m tired, I find it hard to walk….. I get up as usual..but its so hard. I cry in my head. whats better? my way? to suffer in silence to let world know?