Archive | June 2014

Big Changes

I’m going through some big changes here, and not necessarily good ones. My initial version of this post was looking quite different, but things haven’t played out the way they were supposed to, and to be honest, I’m in a bit of a mess. Here’s the deal: Medicare recently made some nasty changes. Because of these changes, many people are being kicked out of hospice care who would previously have received it until the day they died. Many people, including me.

This obviously is a bad situation for anyone to be in. My biggest fear has long been living without access to any medical care. I was forced to do so for about six months once, and my condition is far worse now than it was then. That said, my doctor (who also happens to be the medical director for local hospice) recently looked me in the eye here in my bedroom and promised me he would not kick me out of hospice until another appropriate care plan was in place. He promised me he was not going to abandon me, and that I didn’t need to worry anymore about being without health care in the future. He then made a plan with a county based home health care service that involved him continuing to oversee my care while their nurses made occasional visits and carried out his orders.

This was difficult to accept, because it meant needing to pay for a lot of things that were 100% covered in hospice, either by Medicare or through donations made to the hospice organization itself. I was told the home visits would not be covered by insurance unless “skilled nursing” were required (skilled nursing includes things like IVs, pumps, and basically anything that absolutely requires a nurse to handle). I need skilled nursing because pills no longer have any effect on me (a common problem in severe ME patients due to digestive issues), but so far my doctor has been hesitant to order it. I was on a subcutaneous pump for awhile that worked great until I built resistance to the medication, but eventually the doctor took me off of it rather than continue increasing the dosage. Medications would also no longer be 100% covered, so that could get expensive fast. Also, hospice has been providing the adult diapers I need free of charge, so I would need to begin buying those as well (and trust me, they are not cheap!). But I adjusted. I reached out and found some resources to help meet the expected increase in bills, and I prepared myself for the transfer in care. It could be worse, I told myself. At least I’d still be receiving care, right?

Wrong. During what was supposed to be an enrollment visit from a county nurse, I was informed there have apparently been some huge misunderstandings between them and hospice. Far from what I was told, it turns out the county program cannot provide in home care at all unless skilled nursing is required. To make matters worse, my doctor chose to make the transfer happen on the first day of a whole week’s vacation (his, not mine, lol), so he’s not here to clear things up or find a solution. Because of this, the county refused to even enroll me in their program until they can get ahold of my doctor next week and see if he will order the skilled nursing I need (and they need to accept me into their program). It turns out the county nurses work mostly with people who have PICC lines installed – but they don’t install them themselves, and so far nobody locally has been willing to install one in a home setting. They also won’t do peripheral IVs because they need changing too often. They don’t generally work with subcutaneous pumps, but they said they could if the doctor ordered it again.

Yesterday was my last day in hospice care. This leaves me with absolutely no care at all this week. To further complicate matters, I was told yesterday that as of today, the release of information form I signed so that hospice could communicate with the county would be null and void, and I would need to sign a new one with the county if I wished hospice to be able to continue communicating information to them. But since I’m not being allowed to enroll in county care, they didn’t have me sign a release. So nobody can even talk to each other. Fun, huh?

I’m telling myself to trust my doctor right now. This probably sounds insane to many ME patients due to the frequency with which we are let down by doctors, but I really believe this doctor is a good guy. I believe he thought there was a solid care plan in place for my transfer. And I want to believe he will keep his promise to me and find a way to get me the care that I need.

Meanwhile, I continue living without any pain medications whatsoever. Right now I am experiencing near daily 10s on the pain scale – usually many times a day. This level of pain is incredibly difficult to bear. It is a level of pain that will drive a person insane. It makes rational thinking very difficult – a person experiencing this level of pain would literally cut both their arms off without anesthetic if it would simply make the pain more tolerable. It is an experience described on ME assessment sheets as a point at which being eaten alive by tigers literally couldn’t hurt any worse. It is sheer desperation. It is torture. And it needs to stop.

I don’t know what the future holds for me right now. I would be lying if I said some seriously desperate thoughts have not entered my head while fighting against these intolerably high pain levels, knowing there may not be any relief for quite awhile, if ever. But I also believe I have a doctor who genuinely cares about my well being. So I keep my hopes up that soon, hopefully very soon, he will find a way to get me an appropriate medication in a way that will work to bring my pain a bit more under control. It takes me quite awhile to get these posts written, but I promise to update everyone on the situation as soon as I possibly can once we figure out what’s in store. Once again, I want to thank everyone for sticking with me through this crazy rollercoaster ride. Here’s hoping the next rise is just around the bend. Take care.

Rough Waters

Lately we’ve encountered some rough waters here at my place. I apologize for being behind on comments. I assure you I am working as much as possible to get caught up. Please never feel bad if it takes a few days, or even a week, for comments to be approved or replied to. I’m simply not always able to do the things I’d like here, although I do usually receive your comments one way or another shortly after they are posted, and they always make me smile.

That said, on to recent events. Right now, I am completely without pain medication. Because pills have absolutely no effect on me – and many other severe ME patients – due to digestive issues, and because my doctor isn’t quite ready to put me back on a morphine pump or something similar, our options for pain relief are rather limited. Two weeks ago I had a couple of really rough days. My pain was incredibly high, and my body responded with chills, shaking/trembling, a constant cold sweat, and many more unpleasant symptoms. There was really nothing to be done but suffer through it, so I did. I honestly felt like I was dying. I hadn’t felt quite that bad in some time, despite living with a daily pain level that never goes below an 8.5 (and that’s if I’m lucky). This is, of course, on the “ME pain scale,” where 10 is a level of pain where getting eaten alive by tigers literally could not hurt any worse. Not fun.

Eventually that phase passed, and I went back to “my normal,” although it took about a week to begin to recover from the extra strain placed on my body during those few days. Right around the time I was starting to come out of it, my doctor prescribed a new medication. This was a cream that supposedly treated pain and nausea, and was to be applied to the backs of my wrists every three hours. Shortly after the first application, I began experiencing an increase in my ever-present headache symptoms. After the second application, the headache turned into a full blown migraine and my nausea level began to rise. After the third application, my body had had enough. I threw up – twice in one hour – and became capable of nothing other than lying in my quiet room with my eyes closed, wishing the migraine would end and my stomach would settle. I immediately made the decision to stop all further applications of this medicine, but even so, it took my body all night and half of the next day to return to normal.

As luck would have it, later that evening I began experiencing a new pain in my lower left abdominal area. I had never felt this type of pain before, so wasn’t sure what to make of it. The area in question hurt constantly – even more so when I gently pressed down on it with my palms. As time went by, the pain worsened, eventually spreading to my lower left back – directly opposite the pain in my abdomen, and right next to a compressed disc in my spine. Seeing as it was a weekend, I didn’t want to bother the hospice nurse, so I put it off several hours. Eventually the pain became too much for me. I could barely breathe, much less speak, so I had my husband call hospice’s emergency line for me. Then I threw up.

To make a long story a bit shorter, I eventually realized my bowels had backed up. Thankfully we caught it before hospitalization was needed to fix the issue. Still, it took a lot of very painful effort to empty my bowels. Then, despite the humiliation of lying in my own waste, I begged my husband to wait to clean me because during the course of the effort needed to clear things, my back muscles had gone into a constant spasm, and I just couldn’t face the pain of laying on my right side so he could clean me. I am someone who has lived with multiple chronic back issues since childhood, so knotted and spasming muscles are nothing new to me, but this was a whole other level of back pain due to the fact that this was a severe spasm that refused to let up even a little for many hours. Eventually the hospice nurse showed up and insisted on cleaning me right away. Usually I would be mortified to have a total stranger clean up my waste, but this night in particular I was in far too much pain to care. In fact, I was barely aware of whatever she did. I simply focused on trying to make it through the pain of my spasming muscles combined with my increased ME pain.

The nurse did nothing to stop the spasms (although she did comment on how that whole area of my back was completely tight), choosing instead to give me a nausea medicine and a pain pill – both given rectally since my nausea was too bad to keep anything down, and pills don’t go through my stomach properly anyway. After she left, I asked my husband to apply some Chinese ointment to my back (this stuff really works – think of it as all natural Chinese Ben Gay, but more effective). Often, having my skin rubbed is enough to bring me close to tears, but this night I simply wanted the spasms to end. Unfortunately, the spasming continued throughout the night, until eventually my body was so exhausted I fell asleep. When I awoke, the spasm had stopped and my muscles were simply sore. I had two good days, then another day where my back muscles resumed spasming, causing horrible chills, nausea, and vomiting once again. Eventually it stopped again, although my body is still paying the price for that particular episode.

Needless to say, the past few weeks have felt like one bad hit after another. I have gotten a few pieces of good news, however. First, my mom landed a job here in town. While this job is way, way below her qualification level, she really wanted to be here to help with my needs, and was lucky to find any job at all in her field in this sized town. She starts in August, and her new hours will allow her to be here frequently while my husband is away at work. For many months, I have desperately needed a carer but been unable to afford one or to find any affordable programs to help us out. Because my husband’s schedule varies greatly, there will still be some days I will spend almost entirely alone. But there will also be other days where I only spend approximately two hours alone before my mom arrives to help out until hubby gets off work. Meanwhile, I have an aunt and uncle who live two floors up who recently heard about my dilemma with not being able to make it to the commode anymore. They came down and made a sincere offer to come help with “sanitary cleanup” when needed while my husband is at work. Because my uncle is disabled, they’re home most of the time, so this is a huge help! Between them, my husband, and soon, my mom, I may never be stuck lying in my own waste again! I still need to overcome my embarrassment at having various people clean me, but regardless of how I feel about that, this is really good news. Definitely a step in the right direction.

And on that happy note, I’ll close. Thank you for taking the time to join me on my journey here. It means so much knowing I’m not alone, and that I can help educate about this disease while meeting and making new friends along the way. You guys are the best!

Disease Progression

Recently, it has become much more difficult for me to use the commode. Even though it is just one step from my bed, attempting to use it under normal conditions involves extreme difficulty breathing, muscle weakness (due to cellular fatigue), shaking, and a constant battle to maintain consciousness. Nevertheless, I have been determined to continue using my commode, mostly because I haven’t wanted to face the other options. This changed last week.

One night last week, as I was laying in bed watching Netflix on my tablet, I suddenly had the odd feeling my bowels had released themselves. I wasn’t sure – there had been none of the usual warning signs – but still, the suspicion nagged at me, so I grudgingly made my way to the commode to check. Sure enough, my bowels had released themselves – all over the place! This isn’t easy to write about – I tend to feel embarrassed/humiliated over such issues – but it is part of ME, and documenting this illness is the primary purpose this blog exists. So share I will – even the most humiliating aspects.

Anyway, back to my night of horrors. My husband was asleep, so I woke him to discard my soiled garments for me. This is embarrassing in and of itself (“Here honey, take my poopy shorts and underpants and wash them for me, will you?”), but by now my husband is used to gross requests, so he didn’t make a huge deal of it. By the time he returned to the bedroom, I was in pretty bad shape, gasping for air, shaking violently, and on the edge of passing out. Lawrence (my husband) offered to help me further, but I’d had enough humiliation for one night. I was determined to clean myself, by myself. I began the tedious process of wiping once, then sitting back and gasping for air, clinging with all I had to consciousness, before finally feeling it somewhat safe to attempt to wipe again and repeat the process. Lawrence offered to help several more times, but each time I refused with a breathless grunt or quick shake of the head. Finally, I realized it would take me all night (and most of the next day) to get clean on my own – and that’s only if I didn’t pass out (a big if!). I asked for help.

Lawrence immediately came to my aid, spreading a towel out on the bed for me to lay on. At this point I could not stand on my own, so Lawrence had to half-carry me the few feet to my bed and help me get laid out correctly. He then proceeded to don some gloves and clean me up. After this, I asked him to bring me my pulse ox monitor to check my heart rate, since my heart had been going absolutely crazy this entire time. At this point, I’d been laying still for approximately 30 minutes, yet my heart rate was still bouncing between 160-170 bpm. I hate to think what it was when I was actually upright! After everything was finished, Lawrence helped me sit up on the edge of the bed so he could slip clean garments onto me. I could not remain upright on my own, so he had to hold me upright while slipping first one leg, then the other through the appropriate holes. He then stood me up and held me while he and I somehow managed to pull everything up where it needed to be. Then he placed me back in bed, tucked me in, and left me still shivering, breathing hard, and experiencing crazy heart stuff for quite some time as I struggled to recover.

This experience turned out to be the final straw. Combined with the extreme difficulty and risk factor involved in commode visits over the previous month or so, it forced me to realize it was time to look for other solutions. I contacted my hospice team, who brainstormed ideas. I cannot use a bedpan on my own, and since I am without a carer for approximately 11 hours most days, that simply wasn’t an option. The only thing left was adult diapers. I hate that term. “Diapers.” As if we don’t feel enough like babies without calling our undergarments diapers. Whatever name is used, this is now our solution. It’s not perfect. Sometimes it leaks – especially if I have to urinate more than once per change, but bed pads do a great job of absorbing any leakage so we don’t have to change sheets.

I’m not proud of this latest progression. I’m still extremely uncomfortable allowing myself to “go” in bed. But it does save valuable energy, and prevents the horrendous symptoms associated with my attempted use of the commode. I try to tell myself there’s nothing to be embarrassed about, that this is a normal progression of my disease, and I should simply accept it and move on. But there’s something inherently humiliating about asking your husband to change your diaper, to deal with the smells and messes, and to wipe you like a baby. It’s hard. But it’s ME. Hopefully this aspect will get easier with time. Until then, I’ll be here documenting the good, the bad, and the (very) ugly.

To all my fellow sufferers, hang in there! Despite the isolating nature of this illness, we’re all in this together. Hugs all around!

Reaching Out for Support with a Misunderstood Illness

I promise I have some new posts in the works! Meanwhile, I just had to share this excellent post by a good friend of mine. Please read, share, and follow her blog if you haven’t already. I promise it’s well worth the energy! Hugs to all…

A rainbow at night

I was incredibly uncomfortable with the idea of posting this… So you know what that means: I must.

I wish I had companionship with other people who identified with my particular variant of living with disease. Diseases for which there are barely any doctors who can or even want to help you, for which patients have to help each other find physicians. Who have had to FIGHT to find any support because the public is so DISASTROUSLY MISINFORMED about the true nature of their illness. Who have had limited or no help from the loop of organizations that would otherwise smother you in understanding and compassion had you gotten a more acceptable or understood disease. I wish I knew of the other people whose diseases didn’t have a cure, and who had also exhausted all of their treatment options–treatments other sufferers and tiny organizations of doctors have had to figure out, mind you, because if…

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This entry was posted on June 8, 2014. 8 Comments