lupinelady

[lupinelady]

When Good Knees Go Bad

So I have avascular necrosis in both knees. My rheum said that the damage was most likely done years ago when I was on 60mg of prednisone for over a year, but lupus itself can also cause/contribute to it. It was seen originally on an xray and may also be in my hips, but that is going to be a "wait and see" situation.

I won't know what next steps are until the end of next month, when I see an orthopedic surgeon. On the upside, my pain doctor is finally listening to me! She increased my dose of oxycodone to 10mg (from 5mg). I've noticed my overall mood and short term memory have both improved - looks like a lot of things can improve when you're not in pain all the time, and your whole life isn't centered on when you can take the next pill and get that one hour of relief! I've heard great things about joint replacements. I've also heard great things about the other measures that can be taken to relieve pain and pressure, if they work. So really, I can only go up from here!

The only thing that pisses me off about all of this is that nobody believed me when I said I was in pain. Since my blood work was fine, I was fine, and that kind of thinking is just wrong, and it makes me wonder if the extent of the damage could have been reduced if just one of my doctors listened to me. Here are some pictures of the MRI. Grossssss.

Yay for new knees! Two less joints that will hurt makes me one happy girl  : )

(Trying to stay positive, because there's nothing else I can do. It sucks, but it happens.)

[lupinelady]

John's Hopkins Frustrations & MGUS

I was her last patient, so maybe she was in a rush, but I wasn't particularly pleased with the rheumatologist I saw at John's Hopkin's (please note this is not the same doctor as the one my previous letter was addressed to). She gave me a diagnosis of fibromyalgia based on only two tender points just near vertebrae in which I have degenerative disc disease (lower back). She then told me I should get off of opiates because they worsen fibromyalgia. I asked how she could diagnose fibro with only two tender points and she said that "there's a spectrum". While I understand that the severity of fibromyalgia can vary, to me that spectrum shouldn't include symptoms that don't meet diagnostic criteria and could more likely be attributed to another condition. And my pain gets better with opiates, so I'm not sure how that works, and am concerned that my local doctors will take her word as gospel and take me off of the only medication that currently helps my pain, oxycodone. (If somebody can explain this to me and let me know if I'm misguided in this logic, please do! I'm not particularly well informed about fibro other than that 11 tender points is the standard for diagnosis)

On the plus side, she did diagnose me with Ehler's Danlos officially, so insurance might have to pay for custom orthodics (they wouldn't after I tore a lateral ligament in my left ankle). She also recommended Tai Chi for pain, which I tried and really liked. As for the monoclonal gammopathy of unspecified origins (MGUS), I'm confused about the results of some of the blood work results she did, and am not sure if it's really necessary to follow up on it with a specialist or just leave it alone and forget about it. All the John's Hopkin's rheum said was that I had low IgG and IgM, which would predispose me to infection, but I looked through all the blood work and remembered a lab work up I got last year with similar findings, so I did a little digging. Some background/medical history for MGUS folks: I was diagnosed with lupus (SLE) in 2009 with severe CNS involvement, which was treated with cyclophosphomide for a year (2010-2011). I also have sjogren's, reynaud's phenomenon, ehlers danlos (classic type), degenerative disc disease, restless leg syndrome, hypothyroidism, and asthma. In August 2013, my local rheumatologist was concerned about possibly having amyloidosis (because I have a swollen, "scalloped" tongue - a little hyperbolic if you ask me!). I had low levels of IgG and IgM (517 mg/dL and 15 mg/dL respectively), a normal kappa/lambda ratio at .52, but no M-spike. The pathologist's note said there was a presence of monoclonal free lambda light chains and suggested a urine IFE for Bence Jones protein, but no follow up tests were ordered. This month, the JH rheum ordered similar blood work. This time I had an M spike of .06 in the gamma region. My IgG and IgM stayed at relatively similar levels (516 mg/dL and 14 mg/dL), and, while still in the normal range, my IgA levels dropped from 111 to 99. The pathologist noted that there is a possible IgG lambda monoclonal gammopathy and that a hematology follow up was required. But the rheum said nothing other than to be careful not to get infections and get my vaccinations. I know that's a very low M spike, and that it's good that my free light chain ratio is normal. But I can't find very much on MGUS diagnosis at a young age and whether or not it's important to know if I have it (people are very, very rarely diagnosed with it before 60, and I'm 26). I'm not particularly concerned, but I do like to be informed about the diseases I have (or don't!). I have bone pain (possibly from avascular necrosis - xrays to confirm soon) and neuropathy (numbness/tingling in hands and arms) already from lupus, so it would be hard to know when to be concerned (if I DO have MGUS - nobody has diagnosed me with it, and I believe further testing would be required) if it progresses to multiple myeloma. So basically, I don't know if it's at all necessary to follow up with a hematologist (the division in my practice is hem/onc) or just shrug it off. Any advice would be much appreciated! Thanks!

[lupinelady]

An Unsent Letter to an Uncaring Doctor

Dr. X,

This letter is written to you for all of your current patients. I have chosen to discontinue my relationship with you because of consistently poor practices on your part, and my hope is that this letter brings to light a few difficulties I’ve had under your care that not only were hurtful personally, but also have larger implications for all chronic pain patients.

When I first started seeing you, I wanted to discontinue fentanyl, as some of my doctors had implied it was hurting more than helping (as a side note to readers, this was incorrect). You told me to go to inpatient rehab, and when I disagreed with this recommendation for various reasons (first and foremost, that I am not a drug addict), you handed me a sheet of outpatient services. After calling the numbers listed on this sheet, I discovered that these outpatient services were methadone clinics and addiction support groups. Handing me that piece of paper did the most damage to the trust that is essential in doctor-patient communications. With that one seemingly harmless act, you showed me that you were not listening. You called me a drug addict, told me my pain wasn’t real, and called my need for pain medication - which I take in order to have some semblance of a life – a disease. You reinforced the stereotype that those of us who are on narcotic medications for debilitating pain are just drug seekers. This is already a problem we have to face in society – we get the look from pharmacists and doctors, the lectures from family and friends. You, who should especially understand the difference between addiction, pseudoaddiction, and dependency and the sensitive nature of this issue, who should be our ally, not our enemy, are a part of the problem. You’re the reason I hear patients in support groups discuss their fear of talking to their doctors about the option of pain medication in order to lead a better life. You’re the reason that the patients who are on opiates don’t talk about their increasing pain levels because they are terrified of being seen as drug addicts and having what few pills they do get a month taken away from them.

But I have fought that fear and talked to you about increasing pain levels, and you’ve never once truly heard me. In fact, on multiple occasions, you’ve interrupted me mid-sentence to ask how many pills I usually get. I don’t get to finish that sentence either, because you hand me the slip and usher me out the door. You are consistently rude, sharp, and show no empathy. I don’t care if you’re not willing to prescribe more medication or a different medication; that’s not the issue. I do want to be heard on a level where at a minimum I know you’re making an informed decision about my health and respect me as a person, and ideally, I know you care about what’s happening to me. I do not feel that the compassion, respect, and empathetic listening that are essential to not only good medical practice, but general human decency, are present in your usual communications and demeanor, and that is absolutely unacceptable and deplorable. If you can’t medically help, then the least you could do is let me finish talking.

You should know that a week before every appointment with you, I have panic attacks because I do not trust you, hate the way you talk to me, and hate that I don’t stand up for myself because you have the power to take away the medication I need to live a normal life, and based on your actions and words, I do not believe it would be out of character for you to do it because you had a bad day, or simply because you can. You should know that I cry every single time I leave your office. You should know that I have written this letter in my head over and over again. You should know I’m not the only patient of yours that has felt this way. You should know that I hope some day you suffer the way I’ve suffered.  You should know that I hope that when you do suffer, that you’re treated the way you’ve treated me. But I'm stuck with you. Because of that fear and those stereotypes you perpetuate, I can't just go looking for the right pain doctor, one whom I can trust and who listens, because I'll look like a drug addict cherry-picking for "vulnerable" doctors, when in all actuality, it is us, the chronically ill, the chronically suffering, who are vulnerable. So because I feel forced to be your patient, and for the many other reasons detailed in this letter, you should know that I hope, some day, you will change.

Sincerely,

patient X P.S. Please also see the following resources for scientific evidence that empathetic listening has been proven to lead to better chronic pain outcomes. I would hope that you've already read this literature, but then again, if you'd read and ignored it, I suppose that would be worse.

Study shows that physician empathy helps manage stress and pain http://psychcentral.com/news/2012/12/04/physician-empathy-helps-manage-stress-and-pain/48564.html

Patient-Nurse Interactions (from http://www.ncbi.nlm.nih.gov/books/NBK2658/) One of the earliest evidence-based protocols was developed as part of the Conduct and Utilization of Research in Nursing (CURN) project. Pain: Deliberative Nursing Interventions40 describes an approach to a patient’s complaint of pain that includes skilled communication to determine the patient’s needs. While administering analgesics may be the most appropriate way to meet the patient’s needs, the nurse may uncover other factors contributing to discomfort, such as uncomfortable position, thirst, or the need to urinate.40 Addressing these needs will improve patient comfort and communicate the nurse’s desire to promote comfort. McCaffery35 suggested that the time spent with the patient to communicate concern and caring may go a long way in providing patient comfort. The content of this 5-minute conversation may include the following:

Listening to patient concerns

Communicating the desire to help the patient become more comfortable

Determining strategies that might achieve more comfort35 (p. 78)

Communication with patients is one of the core dimensions of relational coordination, an approach examined in the orthopedic surgical population.39 In a cross-sectional study of nine hospitals, Gittell and colleagues39 found that the better the relational coordination, the better the postsurgical pain relief. Of note, four dimensions (frequent communication, shared goals, shared knowledge, and mutual respect among clinicians) were associated with this improvement in pain control. Thus, this study suggested that communication, goal setting, and patient education contributed to better pain outcome.

[lupinelady]

Excellent

[lupinelady]

So I have a fever of over 100 degrees, which according to my rheum means it’s time to go to the ER. But who has time to wait 6 hours for a doctor to shrug and say, “Well, you have lupus. See ya!”? So I’m considering bumping up my prednisone, which inevitably lead me to think of the 90s song “Pump it Up”, which inevitably lead me to do this: Bump up the pred, bump it up,While you’re head is thumpin’ And you’re joints are crumplin’ Look out there, that fever’s jumpin’Bump it up a little moreGet the pain down to a level of fourSee ‘cause even if it makes you fatYou’ll find out that it’s worth thatI don’t wantan ER stay, so get that stupid fever down tonight make my daymake my daymake my day

Music video by Technotronic performing Pump Up The Jam. (C) 1990 ARS Entertainment Belgium (A Division Of Universal Music Belgium)

[lupinelady]

Seizures

Warning: these may be especially hard to watch. These videos help distinguish the different types of seizures.

Simple partial seizure : consciousness intact

Tonic clonic seizure : alternating stiffening and movement

Complex partial seizure : impaired consciousness

Absence seizure : blank stare Myoclonic seizure : quick repetitive jerks 

Atonic seizure Atonic seizure : aka drop seizures

[lupinelady]

Thunder Thighs and Meditation

Oh my goodness I'm trying to get back into shape and lose the 20lbs I've gained in the past three months, but I'm having trouble figuring out what's too fast. My bones and joints are killing me and I'm exhausted! But I've only been doing one mile on the treadmill, one on the bike, and then strengthening exercises like leg lifts etc., and light (2lb) weights for my arms. Does anybody have tips about walking the fine line between getting in shape and pushing too far? Anybody know how to incorporate a pool in my workout routine (i.e. a website with good water exercises, but no weights)?

I've been recording everything I eat, but the calorie counting is becoming obsessive.  It's causing anxiety, and I feel like it will trigger an eating disorder (I've had minor stints of not eating and/or purging after eating) so I'm going to stop making excel so I don't go insane) and do my best to exercise almost everyday Also, I've had a lot of trauma related to IV and mediport access since I was diagnosed in 2009. I cry and get panic attacks before during and after when even the most skilled nurses access/place a line with no difficulty. It's unbelievably embarrassing and illogically terrifying, so I've been working with my therapist to try and get rid of the anxiety, since this is something that I will have to do probably for the rest of my life. I've been doing two five minute meditation sessions everyday to try and train my brain/body not to freak out and it's so relaxing! I used to hate it, but it's actually really nice. "Square Breathing" is the thing that really calms me down, and progressive relaxation helps too. I highly recommend it for anxiety...My therpaist is also prescribing xanax temporarily (for when I get Benlysta or ketamine) to try and get rid of the conditioned response to needles so I can eventually realize that nothing terrible is going to happen. Fingers crossed it works!

[lupinelady]

Prepared

There is so much pain that comes with this disease.  It cuts your hamstrings just when you can run a 5k, pulls the chair out from under you just when you go to sit down.  But there is an upside to so much pain and uncertainty.  You begin to become immune to life’s nasty pitfalls.  As the people around you struggle with what seems like petty things – a deadline, getting dinner ready, making sure the kids have a ride home from soccer practice – you’re worrying whether the chemotherapy you took for lupus is causing cancer.  You’re waiting for the results of a CT scan, wondering if you might die.  But the reactions are reversed.  You hear the news of cancer and think, “meh, bring it on”, they see that they might miss their deadline and the world is ending.  The great part is, as twisted as it sounds, every. single. person. in this world will get sick.  Not flu sick, I mean really, really sick.  But we’re prepared.  We, the tattered army of the chronically ill, have fought this fight a thousand times.  They don’t even know how to use their AK47.  We can shoot a beer can from twenty miles away.  We are emotionally prepared for the devastation of our bodies, whether it’s in a year or fifty years, we’ll be ready, and that is the advantage, one of the very few, of having a chronic illness. A big thanks to Cracked for this wonderful insight.  It feels particularly relevant, since currently it feels like my body is quitting.  Every time I'm pissed or upset, I read this article and it makes me feel better!  http://www.cracked.com/blog/5-great-joys-in-life-that-healthy-people-never-experience/

[lupinelady]

Candy and Pain Buttons

After my ablation I was put in a recovery room.  I've never seen one of these lovely remotes with a button specifically for pain.  I was very impressed and happy that the hospital had such a proactive approach to pain management.  Thankfully, I never had to push the button!

Also, for those of you with nausea, these candies have really helped me.  Sometimes zofran doesn't cut it, and when that happens, sucking on one of these candies makes the nausea go away within minutes.  It's a godsend!  You can find them at some drug stores or order them online.  They're called Ginger People Gin Gins.  Amazing stuff.

[lupinelady]

Bonus sick

Oh hey, so I might have TB.  And a fractured wrist.  Icing on the illness cake that has been this week.

[lupinelady]

Whoa I haven't posted in a while!  Shit has hit the fan for me over the past six months. Leeeets start in March.  Trouble breathing, like A LOT.  They had to increase my prednisone to 50mg, but did a relatively fast taper down to 10mg, where I had to stay until June (I was on 6mg for a year before that).  By the end of March, I was in the hospital because they thought I was having strokes (TIA).  I was not, and had to endure several spinal taps (they kept missing), which led to a spinal fluid leak and gave me the worst pain of life.  And I've been in a lot of pain over these past four years. 

By beginning of May, I was in the hospital because they thought I was having a heart attack.  I was not.  They told me it was just anxiety, and I was very proud of myself for not punching them in the face.  They said maybe it was POTS.  Nope; tilt table negative.  I got bounced around from rheumatology to cardiology to neurology until I finally got an opinion from outside of the practice.  I went to a cardiologist who listened to me, believed me, put me on a heart monitor.  My resting heart rate is 160 at times. I pass out for no apparent reason.  I can barely walk two blocks without collapsing.  He said I had atrial tachycardia.  I went in for an ablation last Friday.  THEY FOUND NOTHING.  This is a problem that has persisted for YEARS, and nobody knows what it is.  I'm back on a different kind of heart monitor for the next three weeks.

I have a new rheumatologist who thinks I might have amyloidosis. What? My last rhematologist missed it for the past four years? That is a disease that scares me. I don't want it, so I've decided I don't have it.  Period. 

I went to the neuro opthalmologist because I've been having double vision.  More testing next month before she diagnoses it officially as diplopia.  I'm not crazy about it being a permanent thing. It makes me dizzy and nauseous, and potentially points to some pretty nasty diseases. Because of all of this, I was unable to graduate in May.  I had to take incompletes in all of my classes and have been feeling so sick that it's difficult to keep up with the work.  I was so close and have basically another semester in front of me. Oh.  And my boyfriend is out of town for the next three months.  Four hours away.

Fuck everything. Seriously.

Love, Negative Nancy/Sick of it Sue

[lupinelady]

Old high school friend's brother's Valentine's artwork.  Pretty clever.

Some Valentine’s Day cards I made. Give them to people you think are okay, or something.

[lupinelady]

Back, With A Cracked Back

Apologies for the extended hiatus.

I went to my PCP today for back pain. She says she thinks I may have fractured my spine in four places. That or it's a bone infection or problems with my spinal cord (or a lovely combination thereof). I have to go to the ER if my fever hits 100.5. It hit 100.4 within two hours of leaving her office. I just had a DEXA scan last month and everything looked normal, but she says that doesn't mean I don't have fractures/am not at a greater risk fractures because of my steroid use over the past three years. I don't want it to be any of these things. Anybody have similar experiences? I don't know what the treatment plan would be for the infection or fractures, and she wasn't very specific about "spinal cord problems"...Good lord, just when I thought things were on an uptick. Fuck.

[lupinelady]

An interesting article about the benefits for doctors and patients when doctors use social media.

[lupinelady]

Mixup of Past and Present Tenses

I am a senior.  I have a 4.0.  I have taken two graduate courses, but still need to take one more upper level course to graduate both suma cum laude and with honors in my major.  So I signed up for a doctoral seminar.  150 pages a week of reading, plus a study/research proposal.  There's just no way I can do it.  I mixed up "I can" with "I could have before lupus", and it's just one of those instances where out of nowhere reality just smacks me in the face.  Yes, at one point I could have, but I can't now, and may not ever be able to again.  So I swallowed my pride and dropped the class, replacing it with a masters course.  I just can't seem to let go of this graduating with honors thing.  I've worked so hard to not let lupus have an effect on my education, and I want something to show for it.  I went back and forth on it last night, for hours.  I take a risk with my health by doing this, I take a risk with my grades by doing this, but I really feel like I'd learn more in the masters course than in stupid abnormal psychology, or something similar that I will never ever use again.  I took the jump.  Grown up class here I come! PS Benlysta #4 today.  Lots more bone pain and super tired then super awake (from the 40mg IV solumedrol).  This tiredness once a month kind of scares me with school coming up, but hopefully soon I'll start seeing positive effects and it will all be worth it.

[lupinelady]

Benlysta #3, etc.

     Go Benlysta, go!  Today, my nurse was telling me that it's the premedications (benadryl and tylenol) that makes me tired, and not the drug itself.  I find this very hard to believe, but either way, I feel like I've been hit with a ton of bricks, even with the 40mg IV solumedrol. 

[lupinelady]

i saw that you recently started benlysta. i had my second infusion last week and i can already see subtle changes. i can sit on my computer longer with out pain. my hips hurt less, my hair isnt falling out quite as much. i hope it works as well for you!!!

So glad it's working for you!  I've also only had two treatments and have yet to see a difference, but typically benlysta does not take effect for a minimum of three months after starting it (how great that it's already working in your case).  I'm still losing hair like crazy and have had an uptick in cognitive dysfunction as well as worsened sjogren's syndrome symptoms (specifically dry eyes), but mini-flares after infusions are not uncommon, and I'm hoping that it'll start working soon!  Thanks for reaching out; best of luck!