My new American friend “LeeAnne” has written a heart-felt, sincere, articulate, personal post on the topic of Anxiety.
I've decided I'm done being quiet and polite about a number of things. I'm tired of depending on people who are clueless of the reality and gravity of my situation and others like me, to advocate for me. How can they? I often speak up and speak out on closed forums and offer support, advice, and information, when I have it to give. And I am often thanked and told that this is my missed calling. Or teaching. Maybe. I don't know. But I have had life and career experiences that have taught me things that I know can help others.
I do enjoy helping when I can, and I've always been a fight for the underdog kind of gal. I was always a strong patient advocate as a nurse. I was mostly able to do so in a diplomatic manner and have an excellent rapport with many providers and fellow nurses. Many former patients or family members have asked to be friends since I've become disabled. But I also wasn't afraid to pitch a feet stomping hissy-fit or go over someone's head or several heads for a patient's best interest when necessary. I may be on a *hit list or two as a result, and well, that is what it is.
But to my point for today:
It took me so long to admit my anxiety. Incredible anxiety. And even when I did, I was extremely resistant to asking for or even accepting medication when it was offered. I did all the things. Meditation. Counselling. Self-help. More counselling. Alternative healing with hypnosis done by a therapist. (That actually DID stop the recurrent nightmares I'd suffered for years. And I could finally sleep without some sort of light and without HAVING to face the door that HAD to be open but also without my back to the closet.) Threw myself into exercise for the endorphins. Made a habit of gratitude and random acts of kindness. Worked as if I didn't have a home and a family because patients needed me. Then went home and kept going because I did have a beautiful family that I adore and they needed me too. I would go for days on end with zero sleep. Then crash hard when my body finally said "enough."
Eventually though, the anxiety and panic and dealing PTSD became crippling. I finally listened to my doctor with an open mind and started a low dose anxiety medication. I'm SO glad I did. Actually, one short acting for the daytime and one longer acting for the night time. They helped me so much. Yet I still wouldn't really talk about it because of the stigma surrounding both mental health AND medication. Now it actually bothers me not to talk about it because there shouldn't be a stigma. And even though I knew I had Lupus, and Fibromyalgia (which I scoffed at then), and arthritis, I thought those were relatively controlled or in remission. I didn't know Lupus was silently ravishing my heart. I chalked the muscle weakness, tremors, and pain, up to fatigue and *maybe* a little bit of fibromyalgia, which I still somewhat scoffed at.
I had always had frequent upper respiratory infections, I chalked it up to asthma and allergies. I didn't know Lupus and a immunodeficiency was also attacking my lungs. Then I began getting pneumonia every 3-4 months that landed me in the hospital for an average of 2 weeks per episode. Thankfully, I had an excellent pulmonologist that put together what no other doctor at the time had even bothered to investigate.
I finally started getting immunotherapy and had some minor improvement. Then my insurance company decided I didn't need them. Looking back now, I realize that I actually first started getting sick again (after stopping IVIG) in Sept. 2015 right after starting a new job. I found myself struggling to keep up in a job that I should have been exceling in. It was all I could do to make it TO work. I struggled through my day. I'd come home and immediately crash. Unable to function mentally or physically due to the EXTREME fatigue. Looking back, I should have asked for help sooner, but I thought if I just kept going it would get better. I would get better. I just needed a long weekend and more rest. I convinced myself the issues keeping up were a learning curve and I'd get past it. I ended up hospitalized in October for a day of observation. Then starting in late November, I was hospitalized again and would remain so between 3 different facilities from then until after the first of the New Year, save about a 24-48 hour break between facilities.
Around Dec. 3rd, the day after arriving home from my second hospitalization, I was unable to lift my head, could not walk without assistance, was barely able to stay awake and unbeknownst to myself and my husband, I was literally moments from dying. Had I gone back to sleep, what I wanted, instead of to the 3rd hospital, I would have. (A little voice actually told me "If you don't go to the hospital now, you are going to die.") I called my regular doctor who'd been out of town up to this point at my husband's urging. I explained to him what was going on and asked if I could see him first thing Monday. He told me no. That he wanted me to return to the ER immediately but not either of the 2 I'd just come from as there'd be a high likelihood they'd be dismissive of my complaints. We went to the next county over but the same distance as the facilities at home. On arrival, my blood pressure was almost non-existent. I was in V-Tach by the time I got to the ER. We found out that I was septic with infectious endocarditis, but also had Lupus endocarditis that was overlapping that. My white count was 35,000. I was immediately admitted to the cardiac ICU and the world was spinning out of control.
Of course, I returned to work a week after coming home with a PICC line in my arm and another 6 weeks of very strong IV antibiotics. Even though I couldn't walk a block without nearly passing out, I kept insisting I was fine. By April, I was back in the hospital again with bilateral PEs. And in May I was still there, when my doctors made a collective decision that I was no longer able to work in ANY capacity.
But there was good to come of it. The events led to tests that confirmed I do in fact have ANA negative Lupus. If you have ever tried to get in to see a rheumatologist for Lupus with a negative ANA, you will know you can't. I had been being unofficially treated to the best of my regular doctor's ability at that time. The lesions growing on my heart valves are considered stronger diagnostic proof than the ANA. This also led to me getting a confirmed diagnosis of hypermobile Ehler's-Danlos with the rheumatologist. Which is another connective tissue disorder that affects my joint stability and causes frequent subluxations, muscle spasms as they try to compensate for the lax tendons and ligaments, and causes extreme pain. It is considered to be one of the most painful conditions one can deal with. It can also be associated with a vascular form, which can cause the cardiovascular issues I've dealt with that weren't related to Lupus or Dysautonomia. It also makes you more prone to aneurysms. There has been a gene isolated for the vascular and classical types, which have worse clinical outcomes. BUT, Blue Cross won't pay for the genetic testing. However, since we know my symptoms fit and the probability is high, we know what to monitor and that is a big step in being ahead of it.
If you notice I have to go back in and edit a lot now vs when you first got to know me, after coming home from the hospital May 2016, I woke up one day and literally could only see blurs. I couldn't see clear outlines of anyone or anything. My daughter came to take me to an emergency visit with an ophthalmologist where I was told I had some inflammation of the optic nerve, and what he felt was also just some age related changes that would normally just cause me to need reading glasses. I was given some eye drops and monitored to see if the inflammation would resolve or need further intervention. It did resolve. And then I was prescribed bifocals. Well, 2 weeks later the issues with my vision completely resolved. I could not see with the very expensive bifocals AT ALL. Doc said he was clueless. But just keep the eye glasses and use them when needed. Now I have what can only be described as transient vision loss. Some days are fine. Some days I can't see with or without my glasses. I have a pair in almost every strength from +0.75 to +3.0 from the dollar store. In my spare time between all the other specialists, I am supposed to fit in a Neuro-ophthalmologist? Yeah. Great. I'll get right on that. And with my memory loss and aphasia from years of Topamax that hasn't resolved even after stopping it, sometimes I go back and read something that sounds like I was having a seizure when I wrote it and makes zero sense. If you see those things happen, just know the OCD you both love and hate me for is alive and well. I will catch it and fix it. I will not be able to leave it once I see the mistake. It is not in my DNA. I have several other things I haven't even touched on and several more we are still ruling out. But I will spare you those details.
One of the biggest things for me in all of this over the last 5 years, is that after nearly 30+ years of primarily being treated as a hypochondriac, as being hysterical, attention seeking, med seeking, or it all being in my head or a psychosomatic manifestation of my depression and anxiety, I HAVE ABSOLUTE CONFIRMATION that it is none of those things and is not anything that I can fix with a positive attitude, sniffing essential oils, shoving a coffee enema up my butt, chanting while holding a crystal, dancing naked in the pale moonlight (though that's just fun for freaking out the neighbours), just getting a good night's sleep, or any other non-effective, alternative and unproven method of LEGITIMATE treatment.
So why am I telling you this???
Recently I've been faced with a situation that has left me fearful again. I had finally started getting to a place and with a medication regimen that was working. Now because I take a low dose of pain medication to function, and benzos (low dose for anxiety, mast cell activation syndrome, and gastroparesis) I'm being told that because of new prescribing guidelines with the opioid epidemic (and I have an opinion on that I will save for another time), I will not be able to be prescribed both. In effect, I may at some point very soon have to choose between my pain medication and my anxiety medication, both of which I really need. I was willing to try different medications and attempt to wean off the anxiety meds. I have actively participated and researched what other medications were having success treating the things I deal with, or even better MULTIPLE symptoms/conditions so maybe I could even pare my med list down. The new antidepressant added/changed HAS helped my depression AND sleep, the cataplexy and sleep paralysis from narcolepsy, and even my anxiety, a little. However, my anxiety is rising again. Quickly. I do not want to get back to the point again where I was agoraphobic, and could barely handle leaving the house except for MD appointments, and even that was a struggle. I all but refused to drive. I didn't see family or friends, not even my best friend. So, I've tried just cutting back on my pain meds, adding alternatives, heating pads, I have an adjustable bed with a massage feature, and then still laid in bed and just cried in unbearable pain. At times I have been barely able to even walk. That is not an exaggeration.
It has affected every area of my life. I've been robbed of a career I love, the ability to be the mother I want to be, the friend I want to be. It has destroyed us financially. It has no doubt caused issues in my marriage. I've largely had to give up my dignity. Surrender my privacy. Be willing to consent to being treated like a criminal or an addict in order to be able to be treated. I sincerely do not know how I am supposed to make such a choice. Or how anyone else in my position is supposed to either. And MANY are worse off than me. Keep in mind I've been on these same medications for YEARS. Same dose. Filled at the same pharmacy. Never a lost or early or attempted duplicate refill. Never asked for an additional med, stronger med, higher dose, or increased frequency of taking it.
And we wonder why mental health patients are often non-compliant with maintaining treatment....why mental health patients and chronic pain patients are committing suicide...*maybe* because it is so hard to get treatment that is effective and be able to keep it. Both sets of patients are made to feel as if their issues are mind over matter and they should be able to solve their problems with "alternative methods" and could, but for their lack of intestinal fortitude and would rather resort to a pill as the easy way out.
They don't treat mental illness as a disease of the brain, which it absolutely is. Just like diabetes is a disease of the pancreas. You don't give a patient medication for high blood pressure, and then when you get it controlled wean it off. Their blood pressure will go right back up. Legitimate, chronic pain patients, are treated as if the MEDICAL CONDITION that causes their pain disappears once pain is controlled. With the exception of an acute inflammation, acute injury that heals, or injury/condition/deformity that is correctable by surgery, it DOES NOT DISAPPEAR. It needs adequate and appropriate treatment. For some conditions the only thing you CAN treat is the pain. So, we put our faith in our doctors and we find treatment. Get just enough relief that we can function enough to maybe take a shower AND dry our hair AND make dinner later. Then they want to immediately start pulling meds back and weaning them off. Guess what happens? The pain returns and is often worse and more debilitating than before. But, hey, gotta get 'em off those pain meds. The detriment of doing so to the patient and their quality of life be damned. And it's NOT the doctors’ faults.
WHY IS THIS HAPPENING?
AGAIN, it is because our politicians and insurance providers want to practice medicine without a license. They want to tell our doctors how they should treat their patients as if the doctors didn't go through 12+ years of schooling and clinicals to learn how to do so with their own judgement and critical thinking. They tie the doctors’ hands making them afraid to treat their patients or be at risk of undue and harsh scrutiny and possible arrest. It's just not worth the hassle for them. As patients we really don't even blame them. It's not just pain meds or anxiety meds either. It's chemo. Preventative therapies and treatments. Home IV therapy. I go through the same thing every year with trying to keep the IgG infusions that keep me alive. They've already almost killed me once by stopping them. But do you think the insurance company cares?
Doctors cannot practice medicine as they've actually been trained to do. Politicians should stop trying to practice medicine when they have not been trained to.
Because patients are suffering and dying as a result.
Me? Canadian, writer, RN, crafter, Girl Guide Leader, Red Hatter, 3-dog owner, photographer, geocacher, cool Mom, and all around FUN and FUNNY person!