Point of view from the USA, from both a Lupus patient and GP (I'm them)

[Lupusandmore3]

Since the medical system in the US is irretrievably broken and I have no idea how or when it will be fixed (and no energy left after nearly 20 years of GP practice [and now, in the past 30 months a triple diagnosis or SLE, Sjogren's and Hashimoto's thyroiditis] to go lobbying our useless government, I love reading the U.K. Lupus blogs.

I know that your medical and social system is not perfect or foolproof but the fact that you have a social safety-net largely free of gaping holes and a medical system that at the very least provides good affordable care makes me simultaneously thrilled for you and so angry I could punch someone in the gut. I have been a provider of care in this demented system since I entered Medical school in 1994 and over the past few years I have simultaneously become its patient and watched my career end because there is no room for a doctor who can't keep up with the assembly line care we provide here: 24-28 or more patients a day on top of mounds of insurance, bureaucractic, and compliance paperwork, patient calls and requests and so on.

I've tried to return to work 6 separate times, at increasingly easier (read lower paying) and easier jobs, and each time I end up hospitalized and completely wrecked. I'm on a lovely cocktail right now of Plaquenil, Prednisone and CellCept so my immunity is shot, and so is my energy. I'm in a great deal of pain but I'm trying to stay away from anything narcotic (as our lovely new "president" is on the warpath against all narcotics) despite the fact that they did help me. Instead I'm taking methadone at very low doses which does practically nothing and just try to meditate a lot... my quality of life has dropped significantly. I was being given infusions of the drug Benlysta but my monthly copay was going to run me anywhere from $500-800/month and that was just plain impossible for someone now living on short term state disability payments that barely cover my mortgage (and believe me my house is nothing to get excited about), the long term disability payments I lucked into getting through the job I had at the time of my diagnosis (although I had to sue them to get it and now lose 35% of my monthly payment to my lawyers and always will, until I hit 65, and the criminally low child support checks I receive from my Ex (who I admit, I divorced) for our fantastic 14 and 9 year old. I have 70% custody and do absolutely everything that pertains to them but he holds the purse strings and keeps me roped in with them. He's a multi-millionaire, sub-specialist physician, who my family and I helped put through 7 years of training, helped pay off his student loans, paid for cars and vacations and yet... he sees my illness and my suffering and my near poverty as my just deserts. He even tries to hold to paying for half of the kids' school expenses but you cannot get blood from a stone. The saddest part is that he has confused the living hell out of his children who go to a posh private (that would be called public there) school with kids who are forever jetting off to the Maldives and the condo in Aspen (which ex-dad-douche does pay for in order to look like he is doing the right thing) but he won't pay for them to go to a decent summer camp, or music lessons, or travel opportunities, or the musical theater camp my daughter so badly wants to attend. He could afford all of it and more but he won't do it and the kids are so confounded- they are slowly realizing that their father is a stingy, money hoarding asshole and they don't what to do with it or how it intersects with his love for them and so on.... truly breaks my heart. If I had it to give so many of those possibilities would be reality and that is what makes me so frustrated about being sick and not getting better after three years and stuck...

So anyway, back to the system here... Right now I have to pay 1,200$ out of pocket monthly for my health insurance because I've had to leave my most recent job and wait 36 months minimum for my Medicare case to wend its way through the system (another lawyer-but at least he takes his cut at the end and it is capped at 6,000$ total and is a one time thing). If you don't know what Medicare is you are lucky... it is usually used by people of retirement age 62 and above to pay for medical services, medications and so on, BUT, it is also for the disabled and proving that you are disabled is a high bar to clear. It basically cannot be done without a legal specialist working for and with you. Unless you are blind or on dialysis you have to wait 365 days, minimum, to receive benefits, and the normal time is closer to 2-3 years. Even transplant patients can be denied, unless they've hit total poverty and then they can apply for a humiliating thing called Medicaid- care for the poor- which is another set of unnecessary, demanding, and soul crushing hoops.

The saddest thing is that I want to work so badly but there is no place that can accommodate me. I can't perform the duties of my job description and I am not "reliable" as I can miss work at times for up to three days in a weeks, and all that's left for me at my current level of pain, malaise, fatigue and depression, and immunosuppression is to stay home.

My paternal grandfather was born in London around 1907 but my father never applied for his own citizenship and from what I can tell I am out of luck... and I keep hoping that there is some road to U.K. citizenship for me eventually... I am going to get out of this US suckhole somehow...

[Hidden]

Dear Lupusandmore3. What a tragedy it is that's unfolding in your country and for you personally. Thanks for putting it all down in a post here for those of us in the UK to better understand.

But please don't idealise things in the UK too much though because they are becoming increasingly awful - heading in a similar direction to your own country even.

My sister in law is a management consultant for the NHS down in the southwest of England and reports to us that her large local hospital is being taken over by Virgin - meaning that NHS services will be commissioned or subcontracted by this UK based multinational company.

Maybe this will work out better for users, but it hasn't with the trains or prisons. This is the tip of the iceberg I'm afraid because the NHS is falling apart just now in many areas of the UK. It is just a matter of time I feel although I do my personal best, here in Scotland, to try and improve things as a volunteer.

Lack of energy and poor health have got seriously in the way of my own ambitions as an artist. But there are always jugs of lemonade to be made from landing lemons, no matter how sour. Being able to communicate here with others such as you and many wonderful HU friends is defintely one of them!

There is another user of this community who feels much the same way as you and is also a doctor from the US - Vaderviper - Dr S.

Twitchy 😏

[Wendy39 in reply to Hidden]

I agree, our system is at breaking point. It's only a matter of time unfortunately. There is just not enough funding to cover the growing expense of an ageing population and the increase in dementia, cancer treatments, fertility treatments etc etc etc and social care. I wish we had a magic wand but we don't.

[misty14 in reply to Hidden]

Hi twitchy

Is this in south Devon, Virgin taking over a hospital?. Privatisation by stealth and not universally known about!.

[PMRpro]

Just to add to TT's post - the UK isn't all rosy either. Not least because being a GP there isn't significantly different from your description. Too many patients, too short appointments and too much paper. There are people who fall through the gaps - though, to be fair, far fewer than in the US.

I'm British but I live in the mainland EU - if it weren't Italy I'd be considering citizenship here when Mrs Maybe messes up Brexit as she will almost certainly do.

[EOLHPC]

Grrrrreat post Lupusandmore3 🌟🌟🌟🌟🌟

Am TOTALLY feeling for you on ALL fronts 👍👍👍

My own family is all on the eastern seaboard. I've been actively involved with their healthcare issues ever since I moved to the uk & became a British citizen 4 decades ago. Even though I know all too well just how imperfect the Brit health system is, I am vvvvvv glad to be here with the NHS rather than in care in the States.

wish I could wave my Magic Wand 💥 on your behalf...

Am so glad you're here

🍀😘🍀😘🍀 coco

[whisperit]

Yep, having a non-means tested, free-to-access health service is a huge thing.

I've worked both in the NHS and as a self-employed private practitioner in children's mental health. The great thing about private practice is that the quality I could provide was very high; my clients were children in the care system who were funded by state social services, and they were generally very willing to fund whatever was needed. The downside was that there were far more children with equally intense needs who did not have that funding, and so might get no service at all.

The opposite was true in my NHS role, where I saw hundreds of children whose families had no way of affording a private service. The downside was that I worked under strict guidelines that limited the quality and/or quantity of help I could offer.

Over 35 years in the NHS, the worst changes have resulted from fragmentation as parts are contracted out to private agencies and the way clinical decisions have become increasingly dominated by financial considerations. One pet peeve is how it's become commonplace to see people who have been trained by the NHS leaving and then selling that training (or resources they developed whilst in the NHS) back to the NHS in their new role as "consultants".

I won't bore you with more of my opinions, but do hope you are able to find a way of escaping any system that makes getting basic rights harder for the poor and less privileged. Mx

[Cas70]

Thank you for this - you have made me realise again how lucky I am. My sister is in the States and envies me (not the Discoid Lupus or Sjogren's) the care I get.

Can I suggest you track down your grandfathers birth certificate? Ancestry.com are good

I wish you all the best

[Lupusandmore3 in reply to Cas70]

Thank you. Your sister has every reason to envy the care you receive. I can certainly find documentation that my paternal GF was born in the UK. I have almost all of the family documents. Do you think it would actually allow me to apply for U.K. Citizenship?

[Cas70]

You can only ask - you have nothing to lose. I have been seeing a Medicinal Herbalist and I have improved a lot. I was recommended to him by a Doctor who has Lupus ! Good luck

[Purpletop]

OK, that's it, you need to come over here - we need your skills and compassion and your experience in being a patient yourself. This country is screaming for GPs, there aren't enough of them.

You'll find a lot of complaints against GPs on this forum but also a lot of appreciation. Don't let yourself be swayed by the former.

Your husband sounds like a nightmare to deal with, particularly when you're ill and foggy of brain. But it will come a point when you won't be able to take it anymore, despite the strings he seems to be manipulating all the time to keep you dancing.

It's great to have you here. Until you can jump on a plane and come over, keep posting here, we're listening.

[Lupusandmore3 in reply to Purpletop]

I'll hop on a plane now! I'd be more than thrilled to take on a tiny practice of just us rheumies and be paid solely in barter: extra veggies from the garden, perhaps a fresh farm chicken, help working on my electrical or plumbing. I can claim disability benefits, not charge you, and keep things manageable!

Check out a fabulous doc here in the US named Dr. Pamela Wibble, MD. She does a lot of political and personal work preventing physician suicide and she runs classes to help doctors here in the US (at least so far) find their ideal practice whether they be GPs or specialists outside of corporate or government medicine. She's an angel and a friend of mine and she's a huge asset to the medical universe.

So, help me decide where to live. I'm partial to bath as I have friends who live in the area but I do have family in London. However I have extremely little interest in living in a big city ever again after my 20 years in Los Angeles, and 10 years in New York. I grew up with goats, horses, multiple dogs and cats and snakes so I'm looking to go rural again.

The even more ironic part about all of this is my partner/husband, Who is training to be an RN after 20 years in the IT industry has family from Britain. However, his father happened to be adopted into the family and therefore doesn't count, so there's no pathway to citizenship there. I'm still looking into my grandfather's birth in London and whether that gives me any right to apply for citizenship. My other option seems to be to apply for citizenship in Spain as I have turned out to be related on my father's side to part of the group of Spanish Jews who were forced out during the Inquisition. It seems like a very long time past due for Spain to be making reparations but I'll take it if it's on offer. Then again Brexit is going to screw up everything up in terms of traveling between European countries. You just can't win, can you? LOL!!!

[Lupusandmore3]

Oh and on top of it all I have been having a bummer of the past few weeks. My CellCept which I was able to increase to 3000 mg daily seems to have backfired. My blood counts are normal but my stomach is rebelling and I've had to drop my dose to 2000 mg. In addition I was able to temporarily bring my prednisones does down to 5 mg for the first time in three years, giving me the first Ray of hope that I would be able to lose more of the weight I've gained. However, my adrenal gland's would not kick in and I soon developed adrenal insufficiency and had to increase my dose to 7.5 mg daily which is the bare minimum. I still feel like absolute crap. I'm taking full doses of hydroxychloroquine, Lyrica to help me deal with the pain, do you propria on for my severe depression and anxiety, methadone purportedly to treat my pain but it does absolutely nothing, methylphenidate to try to stimulate my energy levels and ability to concentrate and a whole bunch more wish right now I can't remember. I managed to fall on my face three days ago while crossing the street. I thought I was walking normally and didn't see any barriers but before I knew it I had missed the extremely large red painted curb and had fallen flat on my face. I'm finding myself extremely angry, inpatient, and near desperate. It's not that things are actually terrible – my kids are doing well, very well in fact, my health is about the same maybe a little worse but the upside is that my disability has been approved by the Government which should take some stress off of me. I think I'm just mourning the loss of my profession, my usefulness, my purpose, and i'm finding myself experiencing a welling up of all of the old feelings from childhood and beyond that I've suppressed. I've started to write about them and I realize that I have to write about them in order to heal. I've also realize this is going to be an enourmous, and painful undertaking.

This is slightly off the topic but I've been doing some clinical reading about neuroticism and it's cohorts- frustration, anxiety, anger, difficulty "going with the flow," self-loathing and inability to tolerate criticism. Obviously I've been doing this research because I fully fit the profile of a highly neurotic person and highly neurotic people tend to be depressed and anxious but independent of the anxiety and depression they also tend to have impaired immune systems according to five different studies ranging from 1998 through 2006. I am shocked that none of this information has made it out into the leg press or into the general font of knowledge in rheumatology. The studies are very clear . I'll be happy to cite them for you tomorrow when I have access to Medline and you'll be quite surprised that it feels like this information is been ignored. There's even a study regarding cytokines crossing the blood brain barrier more easily in neurotic People!

But I digress... on a personal note I have realize that I am very frustrated, very angry, and that I don't know how to deal with my feelings. I've been having a really hard time with my partner/husband because I keep picking fights with him for reasons that are unclear to me. He ends up stopping me most of the time but it's usually after I've done some damage – I've either hurt his feelings terribly, injured my own sense of self, integrity and self-worth, or as I did today for the first time in years, I injured myself physically. I didn't cut myself or injure myself in that fashion but I punched A very solid wall purely out of anger at myself and it looks like a broken one finger at least. My entire right hand is purple. The bruising starts at my DIP joints, The second set of knuckles, and works its way down into my hand. I'm afraid I've given myself a boxers fracture or although it's definitely not displaced. My hand is swollen and I can't write with it. I don't want my kids to see it or to know about it and luckily they're with their dad for the next two days so hopefully I can hide it and then cover it with make up but I can't hide the fact that I can't write or use my hand. I'm in therapy, I've never taken anger out on another person ever in my life it's always taken out internally because that was how I was taught to self injure as a kid growing up in my house. I'm so embarrassed at how fucked up Byam still at 48 over my upbringing. It seems like it almost gets worse as my children arrive at the ages were the abuse was the worst. I think I may have been triggered by my nine-year-old daughters problems with her stomach right now when I'm afraid may be related to an inflammatory bowel condition because she has sores in her mouth along with abdominal pain and cramping and a lot of frequent painful bowel movements. My ex husband refuses to believe that there's anything wrong with her despite the fact that labs that we already have back are abnormal and we still have more to do. He refuses to let her take the medication that has been prescribed for her and the over the counter medication that makes her feel better so that I've had to pack her a hidden bag of medication to take on the two days a week that she sees her father. I've spoken to him several times about this and he refuses to knowledge that there might be something wrong with her even though her ESR is elevated and she has a normocytic/normochromic anemia. I grew up with parents, especially my father who refused to believe any of my medical or psychological complaints even when I went to them at the age of 11 and told them that I was very depressed and suicidal. They basically told me I was a crybaby and to never tell anyone our family secrets. They allowed me to go on treated for multiple injuries and illnesses- I guess that would be called medical neglect or abuse. They would deny at all today. There was also a great deal of verbal and emotional abuse verging on the physical with threats and violent behavior and accusations on the part of my father while my mother walked away, close the door to her room, and just let it happen. I've talked to several people in my life about these things and I've been in therapy on and off over the past 20 years but it seems like nothing's helped. If I'm still punching the walls in frustration and I desired to be understood and if I can't be understood just to at least hurt myself enough to feel alive then there is something profoundly wrong and as of yet untreated inside me. I live in fear that I am going to ruin my relationship with my partner. I am so deeply insecure that there's no amount of affection or love that could possibly fill me up at this point. I didn't know the deficit inside me was this profound. I left my marriage 7 years ago happy and quite certain of my value. I knew what I wanted from my life and from any potential future partner and I was able to date happily and then eventually meet David with that sense self-love intact. He hasn't done anything to tear me down or hurt me. He has done everything he can to support me, assist me, and provide for us and yet There are so many days where I still feel alone and unloved. He's nothing like my father or my mother. It seems that is my life that has conspired to tear me to bits. Losing my identity, my income, my place in society and the world and feeling ill and incapable on top of all of that has undone me and I don't know how to put myself back together. I don't know how to rebuild my self-esteem because I don't feel like I'm worth anything anymore. I hate no longer being beautiful. I hate no longer being admired. I hate no longer being important and helpful to my patients. I hate the fact that my family has entirely rejected me and left me to deal with all of this alone. I hate that I have to put on a to make sure that my kids are OK and that I don't scare them. I hate that I would hurt myself like this and that I think of being dead so often. I'm not going to kill myself, I don't want to kill myself and I would turn myself into a hospital if I thought that that was where things were heading but it's just the feeling of wanting to disappear that so concerns me. I know that there are so many people who love me and would be devastated if I were gone and I don't want to be gone I just don't want to feel like this anymore and I don't know how to un-feel this. I don't know how to make my way through this maze and feel myself once more. I don't know how to accept myself as I am, whatever it is that I am and will be in the future.

I have lost my direction and my sense of myself and I don't know how to find it again.

[Loopydroopy in reply to Lupusandmore3]

I'm so sorry you're feeling so lost. I know exactly how you feel as I'm sure a lot of people on here do. So glad you found an outlet here. I'm in the states as well, and have been very frustrated with the medical community especially rheumatologist. Not but about a month ago I was thinking I can't go on like this anymore. Knowing full well that I couldn't and wouldn't do anything to myself, you just get so worn down being half or less of the person you have been. I was always the strong one in the family, taking care of everything and standing up for everyone and then I go so sick that I couldn't muster the strength to call the phone company to take care of a bill much less handle work. Hugs to you, you are not alone

Teresa