Where do I start?
I realize I haven’t kept my blog or many of my friends up to date on most of the “stuff” that’s been happening in my life. To be honest, there has been so much and it has been so overwhelming that trying to explain all of it is an energy-hogging endeavor. But I’m going to condense several months of challenges into several paragraphs and then tell you the good news! I guess for you to understand how miraculous the events of the last few weeks have been, you need a bit of background about the mountains and hurdles that required these supreme acts of God on my behalf.
Spinal Cord Stimulator Trial
It seemed as though I’d never get to take the Boston Scientific Spectra Spinal Cord Stimulator for a trek around the block! There were so many “Red Seas,” I called them, which had to be parted in order for this process to go forward. While I originally started the process of getting the pre-SCS trial requirements out of the way in June of this year, its taken roughly three and a half months of paperwork, phone calls, faxes, doctor’s appointments, and extreme self-advocacy to reach the current place where I now have a date for the Spinal Cord Stimulator trial, October 11th. This process normally only takes a few weeks.
The trial is a one-week test drive which uses an epidural and temporarily-placed electrode leads fed up along the spinal cord, connected to an external stimulator (about the size of a pager or cell phone) which is worn around a belt. Other than the epidural needed to place the leads against the nerves in the spinal cord, no other operation is required. If the trial is “successful,” I should experience 50% or greater relief of pain and a decreased need for medication, plus increased independence (though there will be movement restrictions which will significantly impact my ability to do certain things for myself). Naturally, there are a ton of caveats and additional bits of information rolling around in my brain as I say that, but that’s the layman’s quick-and-dirty version.
On August 7th, I had the required psychological evaluation performed to determine my mental stability and emotional ability to cope with the challenges of a stimulator trial/implant/etc – it’s no cakewalk, after all. The assessment went well and I was deemed eligible under several conditions, including that I needed to have a psychiatrist with whom I would have established patient care on record in case I needed medication during the process, as medications often result in hallucinations and temporary psychosis due to the complications of dysautonomia. In short, meds make me SICK! and if we need pain meds of some type to help me get through the SCS process, we also need a team of doctors who understand my medical history and how MY body works so as to make wise choices about what meds are safest to use and how to treat the psychosis if it rises to the surface.
But finding a psychiatrist who accepts the combination of Medicare AND Medicaid in North Carolina is worse than looking for a needle in a haystack. I certainly didn’t have the money to pay for such an evaluation (hundreds of dollars!), nor the time to wait several more weeks for an appointment as a new patient. The evaluating psychologist and his team had clearly communicated to me that THEY would help me find a psychiatrist to meet this requirement, as I’d already put in an admirable effort to do so through both the Duke and UNC hospital systems and a plethora of private practices, yet to no avail.
After many late nights of phone calls and even leaving messages on psychiatrists’ answering machines up to 2am, it seemed as though this requirement of getting a psychiatrist was serving as the Berlin Wall between me and SCS; not its original purpose. I was angry with the evaluating psychologist’s practice and their insistence upon meeting this criteria without anyone (that I could tell) lifting a finger to HELP ME MEET THEIR CRITERIA as PROMISED by a handshake. Time after time, by each doctor’s practice and often by multiple doctors/assistants within each practice, I was told one thing…then another…and another, and I finally couldn’t tell which way was up anymore. I just kept up with the oceanic volume of emails, faxes, and phone calls each day to check up on each provider and hold them accountable to their word. I documented each and every contact, phone call, email, or fax I sent or received because in the medical field, “If it isn’t documented, it didn’t happen” as a rule. Failed communication between my doctors and their staff and me the patient, compounded with communication snags between different providers’ offices, was at the root of the hold-up. I felt like I was trying not to fall out of a canoe in the ocean during a hurricane. I had fallen through the cracks of the system where patients find it nearly impossible to get providers who accept Medicare and/or Medicaid, and especially the combination of the two.
On August 22nd, one of my psychologists had come across three practices that she thought might take me. On the 27th, I had an appointment with Dr. V, a psychiatrist who had worked with the VA for at least 32 years and who had a significant number of years of private practice under his belt as well. Dr. V got me right in! That in itself was a miracle. Finally, I had a psychiatrist who could help me!
But you know what was even more miraculous? This psychiatrist wasn’t taken aback by my mental health history. I mean, I do have a “history” if you will. I’ve been hospitalized for depression, for hallucinations, I’ve fought with suicidal ideation and major depression, anxiety, and obsessive-compulsive tendencies, to slap a label on it all. And given how many times I’ve been around the block with doctors, including psychiatrists!!!, who thought the pain I was experiencing was more psychological than physiological in nature because they didn’t understand the diseases that I have, I knew there was the possibility that a psychiatrist would see my record and say “nope, she’s a train-wreck and I just don’t think she can handle SCS” or whatever… At least that was my fear.
Instead, Dr. V said “I’ve worked at the VA for 32 years and I’ve never seen someone with a medical history as complex as yours.” I surely didn’t want to win that prize, but it put all of this into perspective for me when, staring over the laundry basket of medical records in my lap, I was facing a psychiatrist who seemed to understand. He asked if I had suicidal thoughts, “Well, sure” I said – I felt no reason to hide it, nor that I could if he looked through my record anyhow. I’d brought him a CD full of medical records scanned in PDF format for his review. He told me that the pain I experience is a different form of pain entirely – CRPS is its own breed of monster – and that I’ve been very strong to endure and that if I’d told him I had not had suicidal thoughts, he would have thought I was lying. I told him, “I’d be more concerned if someone living with the amount of pain I face daily WASN’T depressed than if they were!” He agreed.
In the end, Dr. V wrote a glowing review of my history that explained clearly that the psychotic states I’ve experienced are neither permanent nor are they my normal state of mind; that they have been caused by extreme pain and medications that didn’t agree with my physiological makeup and neurochemistry; that dietary management was also a key factor in maintaining my mental health; and that he felt I was a primary candidate for a Spinal Cord Stimulator. A glowingly positive evaluation like this was likely necessary for Medicaid and Medicare approval for the SCS, given my history. He told me that if I was given meds which caused me to hallucinate, we would probably need to ride it out and wait for my body to resolve its issues rather than adding more medication into the mix and potentially causing me to become sicker. Though living in a psychotic state is utterly terrifying (something you’d have to experience to fully understand), I agreed with his plan. Antipsychotic medications have awful and potentially lifelong side effects, and there’s no way to know, given my body’s issues, that antipsychotic treatments wouldn’t actually backfire in my case, making the situation much worse. I can also typically tell when I’m hallucinating as well, a skill I’ve developed from years of practice at constantly judging “is what I’m seeing/hearing/feeling…reality or not?” and try to deal with the hallucinations using positive coping strategies. So waiting it out would probably be the best way to go, even if that meant additional hospitalization for a limited time. Let’s just pray that doesn’t happen, okay? 🙂
At this point, I sent Dr. V’s evaluation to the original evaluating psychologist who gave me a big green light and a thumbs up to proceed to the next step of scheduling the SCS trial. Unfortunately, I had received conflicting information about scheduling the trial and was told that there were several more weeks of waiting ahead of me before Medicaid would approve the trial and we could proceed. So I continued to advocate, wait, and press forward on climbing the other mountains set before me in order to get myself ready for both the trial and the possibility of a future SCS implant.
I’ve had the SCS trial date on the calendar for a few weeks now and I have waited patiently…it’s 10 days away. 🙂 But I can trace the hand of the Lord as He gave me the stamina to advocate and deal with an incredible amount of stress. It seems like again and again there has been a door shut in my face, but God keeps opening up the windows. He often doesn’t do it as expediently as I would prefer, but I suspect He’s giving me more opportunities to grow in faith and trust Him in the meanwhile.
Personal Care Services
As I was dealing with the SCS trial requirements and many doctor’s visits, I was also appealing Medicaid’s (CCME) denial of Personal Care Services. Personal Care Services (PCS) is non-skilled assistance with activities of daily living including mobility, bathing, dressing, eating, and light housework, provided to individuals in their homes; the kind of help I’ve needed for months and have been receiving, in part, from members of my church.
You may recall that in March I had an “impartial” evaluation from the Carolinas Center for Medical Excellence (CCME) by a nurse who came to my home to determine what level of assistance I needed. The visit went horribly wrong and I felt this nurse put me in physical danger, nevermind the emotional side of it all. I decided she would never come into my home again!! This nurse told me I was not “disabled enough” to receive services. But while praying for several weeks I had decided not to appeal the denial of services. I also didn’t feel like I had much energy to go through this all over again; I’d already been through so much. Rather, I chose to work hard to get my body into a healthier state so that I could better care for myself and also do what is best to keep the CRPS from progressing. I worked hard from 7am-11pm almost every day to add exercise into my daily routine, continue working my part-time job, and attend all of my doctor’s appointments independently. I was really proud of the way I’d taken responsibility for myself and I saw how God was giving me the grace I needed to keep up the pace and change my lifestyle for the better. I set new goals, which was quite a process in and of itself, and I learned a lot about myself during that time. I’m so glad I was able to do that for a few months! I didn’t take it for granted!
Then my health failed miserably again and it all came crashing down, first one wall, then another, and finally the whole thing fell into a pile of rubble that lead me to the state I’ve lived in for the last three plus months – unable to drive, quitting my job, unable to cook or clean or even care for my basic needs most days adequately enough to consider it safe for me to live alone. From what I’m gathering both from others who have the diseases I have plus from what my doctors tell me, this up and down yo-yo effect is quite common among people who have Dysautonomia, CRPS/RSD, and Fibromyalgia. Sometimes everything flares into a raging forest fire and it takes every resource at my and my doctor’s disposal to put out the blazes…. and then there’s a period where it just smolders for a while before another re-ignition. There’s no real way to predict how things are going to go. It’s probably something I need to learn to accept.
So in July I began the process over again – applying for PCS. This time I was working in two directions at once. I was both trying to get a re-evaluation by a DIFFERENT nurse through CCME and also hoping to appeal the original decision. My new primary care doctor (whose staff have been much better at getting things done in a timely fashion than my previous primary care doctor) got the forms sent off to CCME for re-evaluation for PCS services. Unfortunately, a few weeks later I called CCME to check on the status and they told me I’d been denied because the form was not correctly filled out. I wrote down what they had sent in that wasn’t correct and called my doctor’s office to explain what I knew about how the form needed to be filled out. We tried it again, but the second time we had another error. Finally, after a few more weeks and the help of a kind community liaison and disability advocate who came from Durham to my town to assist my doctor and her staff in correctly filling out the form, it was on its way to CCME for processing. I was to hear back within 10 days about scheduling for a new nurse evaluation. 14 days passed. No news, no nurse, no hope of PCS.
In the meantime, I was doing anything BUT sitting on my proverbial keister. I spent hours writing down my level of independence and assistance needed with each activity of daily living that would be evaluated by CCME for determining whether or not I should qualify for assistance. I left no stone unturned and was entirely honest about what I could and couldn’t do, even when the admission was embarrassing. I also wrote, as accurately, factually, and non-emotionally as possible, an account of the experience I had with the original nurse who did the assessment in March. I wanted to show that the “impartial assessment” was anything but actually “impartial” and that I’d been put in a very difficult position. I had no vendetta against Ms. Nasty Nurse who had come; I just wanted what I felt was my basic human right – a fair, impartial assessment.
I kept checking in with CCME to see if any progress had been made, and I met a woman over the phone who worked for CCME and who actually treated me with respect and had an innate desire to help me when I explained my situation. I’ll call her Ms. K. I did tell her about the nurse who had come because I told her I would not allow that same nurse back into my home for a re-evaluation, period, and I just wanted to make sure I wasn’t going to be denied again for services because I wouldn’t allow her into my home! Ms. K was fairly horrified by my honest account of what happened during the evaluation, and she said she’d do everything she could to help get my written complaint into the right hands so that I wouldn’t end up in such a predicament again. She also spent time explaining how the form was supposed to be filled out, and her help was instrumental in our ability to get that third form correctly filled out by my doctor. Ms. K gave me the contact information for the administrative law judge who would be determining my case during a hearing so that I could follow through with paperwork issues.
I received a letter in the mail with the date of September 12th for a phone mediation between myself and a CCME nurse, with an impartial mediator to assist in the process (probably so that neither party would find some way to strangle the other over the phone). The idea was to reach a settlement so as to avoid a hearing, trial, or litigation in the Supreme Court. While I was willing to pursue the case to that ends, I kept praying that I’d not need to do so because it could be settled quickly. I just wanted services – I didn’t want litigation! I felt fairly confident that mediation would settle the problem and I’d get services, as I thought the nurse from CCME would be able to make that determination.
Little did I know that this could be the worst possible time for anyone in my situation to need Personal Care Services. CCME was shutting down and had chosen to throw up their hands and schedule no more evaluations for the last two weeks, which is why I’d not received any contacts regarding a new nurse evaluation. Then there was to be a full month of “down-time” – as if people NEEDING PCS suddenly don’t need help while the state agencies more or less take a nap! – between the CCME shutdown and a new entity called Liberty Healthcare picking up the ball and only beginning to start the evaluation process for patients already in the backed-up queue in October. It was looking as though I wouldn’t have a re-evaluation until at least mid-October according to the mediator and the nurse on the line, and given the amount of time that had passed between my original eval and now, it was required that I receive another assessment before an official decision could be made, as the second denial had been purely an administrative denial due to the forms being incorrectly filled out.
Quite unhappy with this situation, I kindly asserted myself and said, “With all due respect, I’m NOT ok with that”. Though the mediator and nurse had started the mediation by saying my case was simple and I’d just have to wait until mid-October for an evaluation or wait for a hearing or court date, I decided I’d waited long enough and if given the ability to do so, I wanted to represent myself fully so that they understood the gravity of my situation. Like I said, I had my 9 single-spaced pages prepared and written in medicalese (I used to be an Occupational Therapy Assistant, so writing functional assessments wasn’t new to me) as I went into this mediation so that I could explain my physical limitations clearly and accurately, though with a personal touch. I also presented my complaint regarding the original evaluation. The nurse, gratefully, was aware of the process involved with getting a Spinal Cord Stimulator, and both the nurse and mediator seemed to understand how seriously I needed assistance. They, like Ms. K, were interested in genuinely helping me. As I was speaking, the nurse was trying on her end to get a re-evaluation within 24 hours or less by contacting not only her bosses at CCME, but also the one person she knew of in charge at Liberty Healthcare. Meanwhile, the mediator was working within her professional network of connections to see if she could help me get a hearing date ASAP. The nurse and mediator explained that, unfortunately, CCME simply would not be able to do ANY more assessments within 24 hours; it wasn’t going to happen. At one point, they both expressed sincere compassion – they were definitely “on my side” – and said, “Sarah, we want to help you, but both of us have our hands tied and you’ve fallen through the cracks because of bureaucracy and red tape. It’s bad timing.”
Towards the end of the call, the mediator said “I very very very rarely recommend this to anyone. Do you understand what I’m saying?” I replied, “Yes Ma’am,” getting the hint that she was going to probably urge me to do something that would be in my best interest but not typically in her best interest (as the domain name on her email address ended in “no-trials.com”, again suggesting that her primary job role was to help parties settle to avoid litigious situations). “Sarah, I want to encourage you to impasse the mediation today. I cannot tell you to do so; it’s your decision, but I want to encourage you to consider pressing on with the hearing before the administrative law judge. I strongly feel you have a good chance of winning the case.” While the nurse probably wasn’t allowed to agree to the mediator’s recommendation (as that would mean she’d be recommending I go up against her company and take this to the next level), she said nothing against the recommendation and said she certainly was doing everything she could to help me get an evaluation, but that given the time frame, they both agreed that getting a hearing date might take less time than actually waiting for an evaluation.
I was grateful that I’d met some compassionate humans. Though their hands were tied, I was grateful for and to them because of their desire to help and their attempts to do so. Emails were flying during the mediation, as they tried to contact their bosses and people above them on the corporate ladder. They really tried, and that’s all the more I could have asked.
I decided to impasse the mediation and press for a hearing with my judge. The mediator had the judge’s contact information including email address, and asked if she could send what I’d written to the judge so that she could review it. We were hoping, just a little, that the judge might read my case and get to it promptly. This wasn’t likely, however, given that the judges are swamped with similar requests and it usually takes more than a month for patients to get a hearing date. So no matter which way I turned, it could be expected that I’d have to wait 4-6 weeks for any type of progress to be made. If this timeframe was accurate, I knew that I’d not have PCS during the SCS trial and that there was the very real potential that I’d not have PCS during the SCS implant (if in fact the trial was successful and I wanted to proceed with the implant of the SCS). Granted, I’ve needed PCS regardless of the increased restrictions and if the SCS isn’t an option for me, I’ll need care at home and will likely need to consider going to an assisted living facility or, worse, a nursing home.
My church, family, friends, and even countless people who don’t know me very personally, have been praying for me. I’d love to know how many people are included in this army of prayer warriors! I know there are children in my church who pray for me consistently! I am greatly encouraged by their prayers. It’s the simple ones I like best. 🙂 During the process of mediation I’ve had people praying that it would end favorably and that I’d not have to go to court. After the decision to impasse, I had even more people praying that God would miraculously cut through the bureaucratic red tape to bring resolution and the help I need, that God would give me favor with those who had to push my paperwork along, and that my case would no longer fall through the cracks in the system.
So I began the process of waiting again. There wasn’t much more I could do at this point…just pray and wait. I took a little over a week off from handling medical stuff. The mediation and all that I was working on for the SCS trial had just taken a lot out of me; I was beat. It’s the first time in longer than I can remember since I’ve just put the medical stuff away for longer than about 2 days and taken care of my more immediate needs, including getting some R&R. I watched two movies on a portable DVD player Missy had loaned me (I had not watched a movie in at least 8 months that I can recall), I painted my fingernails funky colors, and I slept like sleeping was about to go out of style. I read good books and I read my Bible and spent time with the Lord.
On September 24th, 12 days after the mediation, a new nurse came to my home to do a re-evaluation. She was from liberty and had been ordered by my judge to do an assessment immediately. She didn’t even have a laptop computer yet, so she had to do the evaluation by pen and paper! Remember…Liberty wasn’t to do any assessments until after October! This really was a miracle and the assessment went well. The nurse was both extremely professional and a nice person. I think she understood me and even connected with what I was saying on a personal level. Unlike Ms. Nasty Nurse from the first eval in March, this Ms. Angel Nurse saw that I was a HUMAN and not just a CHECKBOX. She still had to use a series of checkboxes and whatnot to determine my level of assistance and need, but I had confidence that she wasn’t trying to do me wrong. In fact, as soon as she arrived, she asked me, “Where would you like me to wash my hands?” This set me more at ease because the first nurse came into my home with a ‘tude (short for attitude, but a bad one) and said more than asked, “I don’t really have to wash my hands, do I?” and it set the whole situation up for failure before we even got started. Ms. Angel Nurse respected me. I felt the evaluation was in my favor for obtaining PCS and it was mostly a matter of time now until I knew for sure. I was expecting to wait another 2-4 weeks to know and/or have services begin. Otherwise, of course, I was prepared to go to a hearing.
Today I received a phone call while riding in the car to a doctor’s appointment, one week after Ms. Angel Nurse’s evaluation. The woman on the other end said my last name correctly, which surprised me. “Oh, you said my last name right! WHO ARE YOU?!” I said with exceptional enthusiasm. Lol. If someone says my last name correctly, it definitely gets my attention because, well, most people fail miserably at it (sorry…but you do!!!). She told me she was the Attorney General for North Carolina. I said, “Does that mean you’re an ALJ (administrative law judge)?” She laughed kindly, but I could tell I was a ways off by how she said, “No, I’m definitely not.” I now know that an Attorney General works for the Supreme Court of North Carolina. Evidently, in one way or another, information about my situation or the situation of people in my boat waiting for PCS services and evaluation had caught the attention of the media. I’m not sure exactly how my case got into her hands, as I never intended it to get pushed that high up the ladder unless absolutely necessary. It could have been the complaint I filed against Ms. Nasty Nurse or that in conjunction with the new evaluation which could together have pointed to a very unfair initial evaluation. Or it may have been the work of the mediator and CCME nurse, or the actions of the ALJ presiding on my case to quickly press for re-evaluation and resolution. In any case, she was perhaps overly apologetic, explaining that I was treated wrongly and that the decision to grant me 80 hours per week (PCS Plus) of Personal Care Services has been approved and that I should begin receiving such services within a few days! I was given the option to continue with or nullify my request for the hearing if I want to accept the settlement offer and approval. Of course, as my intent all along has not been to go to litigation but only to secure an impartial and fair evaluation so that I can receive the PCS that I so desperately need, I was happy to let someone else have a hearing instead of me.
The amazing thing about all of this is that I will have PCS before I start the SCS trial, and likely (if my health status doesn’t improve) for the next six months before a re-assessment is due at that time. If the SCS trial is successful, I will have PCS to help me recover as well. Whether or not I get the SCS, the PCS will be there to keep me going for half a year or so, which should give us a better idea of my overall health and capabilities as I continue to work towards independence again.
I have more to tell you, but this post is already insanely long. I guess it’s now pretty obvious that I’ve been both very sick and very busy at the same time. But God has brought me through some very very difficult situations with miraculous provision that has repeatedly defied all odds and explanation. The timing is working out so that services are starting when I need them most so that I’m not disqualified from getting the SCS because of a lack of personal care. And, perhaps most amazingly, I haven’t lost my mind while hiking these mountains and rounding these molehills. God’s got me covered. Life isn’t easy, but it is under control – His control, not mine.