Another Update

Dear Friends,

Recently there have been a lot of questions in the community about what has happened to me and where I am with things. I am now very near the end of life, and writing posts has become next to impossible, but I wanted to try to get one more out. This post will be written in many parts, and may seem rough around the edges, but it is the best that I can do at this point. I know you will understand.

First, regarding care. My initial reevaluation for hospice care was denied – in part due to misinformation coming from the whole CFS mixup. After this, my doctor agreed to treat me himself, without the aid of nurses since he couldn’t find a way to get any into the home. Things began going downhill so fast, however, that he recently talked the hospice team into readmitting me for 60 days, which should be plenty of time for things to finish playing out. So I do have care once again, and words can’t express how much I owe my doctor. No matter how many doors were slammed in his face while trying to get me appropriate care at home, he never gave up, never walked away like so many doctors do. He is an incredibly rare find, and I am blessed to have him overseeing my care.

Second, regarding the medical side of things. My doctor has me on subcutaneous Dilaudid, which is working pretty well for my pain, and finally stopping those horrendous 10s. My bowels have quit working on their own (the nurses can’t hear any bowel sounds whatsoever), so every third day we force them using a suppository or two. So far that’s working out okay. For a week or two I had heavy bleeding out of my private area – the cause of which is unknown since I experienced menopause nearly two years ago, and the symptoms didn’t fit menstruation anyway. It seems to be letting up somewhat now, but the whole thing is still a mystery. I am extremely fatigued and have difficulty staying awake most of the time. I also experience mental confusion, slurring of speech, extreme muscle weakness, lack of fine motor control, and other such symptoms more severely and frequently than I did before. And of course I’m still losing weight.

Recently, my body has begun refusing all liquids. It’s like the food fiasco all over again, but with liquids this time. Everything I try to drink comes back up. I am vomiting many, many times a day. I have tried many natural and prescription “cures” for nausea, without success. The one thing I have found I can sometimes keep a tiny bit down of is Red Raspberry Leaf Tea, although I still vomit that up more often than not. I have not given up the battle for fluids yet, as I’d rather not die of dehydration if it can be helped. There are other things happening in my body which will kill me soon enough without adding dehydration to the table. Recent blood work has shown the biggest contender at the moment to be dangerously low potassium levels. The levels I am experiencing are fatal if not treated, and I have chosen not to treat them. The low potassium is almost certainly a result of both lack of nutrition entering the body and frequent vomiting, and thus is simply one more part of the disease process I am allowing to play out. As time is now so limited, my husband has taken advantage of a federal law (the Family and Medical Leave Act) in order to stay home with me full time until the end. This has been not only a tremendous help, but a real necessity as things have progressed.

Looking forward, there are several more posts I felt strongly about writing. I do not think that they can happen at this point. This may well be my last post, although as I’ve said, my mother has the login details for this site and has promised to post an update once I’m gone. She is also fully qualified to answer any questions you may have for her at that time, and has promised to do so as time and circumstances permit. I just wanted to say how very much I appreciate all of you. The fact that you all have been so supportive, both in your comments and in sharing my posts around the web, means more to me than you will ever know. The ME community may be very ill, but we are also very strong. Thank you for showing and sharing that strength with me. God bless.

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Clarification

(Note: if you haven’t read the post prior this one titled “Final Stages,” you will want to do so before reading on. Click here to bring that post up. Thanks!)

Hey guys,

First, let me say a huge thank you to everyone who has liked, commented on, and/or shared my last post. The outpouring of support from the ME community and elsewhere has been nothing short of amazing. Unfortunately, as I am now averaging literally hundreds of responses a day, there is simply no way for me to reply to individual comments. I am trying very hard to get together enough working brain cells for two or three more posts I feel are important right now, so energy conservation is an absolute must. Still, I couldn’t post this without letting you guys know how very much your support has meant to me. Thank you!

Second, I made a bit of an oversight in my last post by forgetting to mention at least some of the history leading up to this decision. I had not expected that single post to go viral the way it did, so had assumed most people reading it would be somewhat familiar with my journey prior to this point. Oops, lol. That said, let me explain. The decision to stop eating is not something I came to easily or quickly, nor is it something I decided on the very first time I found myself unable to get or keep food down. My case of ME is progressive, as opposed to chronic or relapsing/remitting, which are more common forms of this disease. I have had ME for over a decade, during which the disease has made clear and consistent progression regardless of any and all methods tried to slow it down or force it to stabilize.

Yes, I have tried it all. The diets, the supplements, the forced rest, living within the energy envelope, etc. You name it, and if it is a legitimate option to help people living with ME, I’ve tried it. As far as the nausea itself goes, I have tried multiple medications in several forms, including but not limited to: pills, oral liquids, sublingual (under the tongue) medications, creams, and suppositories. I’ve also tried diet and lifestyle changes. Nothing has had any effect whatsoever in helping my nausea. In fact, I had bad reactions to several of the anti-nausea medications that actually forced severe vomiting instead! Ironic, huh? As for liquid diets, while I was able to live on them for awhile, I can no longer keep them down, either.

One of the posts I plan to write very soon will be on what we believe to be the causes of my particular digestive issues, as well as those common in ME. Yes, I said “causes,” plural. I don’t believe at this point there is one single cause behind my digestive issue, but rather two or three, all common in ME, which have combined as the disease progressed to create an entirely untreatable situation. I’m sure the doctors could figure out something via artificial nutrition methods, but my last post explains my reasons for turning away from that particular route.

In any case, I wanted to post this to explain: This is not a decision I or anyone else should rush into. There are many types of treatments which exist for various causes of nausea, and it’s important to try to find a fix before making this type of decision. This has been a long, long process for me, and I wouldn’t have shortened it for the world, because now I know that I know that I know I am making the right decision for my circumstances. I have peace about it – even if I am a little nervous about how it will all play out.

Once again, thank you all so much for the tremendous outpouring of support and understanding I have received over the past few days. It means even more because I know many of you also struggle with each word and sentence you write, yet you chose to spend precious energy writing to me anyway. You guys inspire me every single day. Much love to each of you.

Final Stages

Dear Friends and Family,

This is a post I’ve been putting off for quite awhile. But I no longer have the luxury of putting it off anymore – not if I want it to get written. My personal journey with ME is near its end. A long time ago, after months of deliberation, I made the decision that if my digestive issues ever got to the point where I could no longer get or keep food down naturally, I would not seek life sustaining measures, but would allow the illness to play itself out naturally. I am at that point, and have been for awhile now.

Let me preface this by saying that none of this is a judgment on those severe ME patients who choose to take advantage of technology like nasogastric tubes, hydration IVs, etc in order to remain alive as long as possible. I believe this is a highly personal decision, and what’s right for me may not be right for the next person (and vice versa). For me, this decision was made based on the knowledge of what ME often turns into for those who accept life sustaining measures. As bad as things are in my current situation, they could get even worse. ME truly can become a living death – except with much, much more suffering – a large portion of which is untreatable. This is difficult not only for the patient, but for loved ones who have to stand back and watch the process, longing to reach out and help but knowing their very presence only increases their loved one’s suffering a hundred fold. I have already experienced much of this. I cannot personally justify enabling it to continue and worsen via medical technology – not in my specific case. That said, each person must decide for him/herself when enough is enough, and where their individual priorities lie in terms of life and the quality it holds for themselves and those around them.

Right now, my body is literally starving itself to death. Even my best efforts to get food down have been met with frequent vomiting, rapid weight loss, and clear disease progression. The fight to get food down is exhausting. It involves closely monitoring nausea levels every single waking moment, waiting for the one minute window I may receive each day where my nausea subsides just enough that I think getting two or three bites down might be feasible. Even then, I nearly always lose the food anyway. The excess weight ME once placed on my body is coming off extremely fast. Just one example: I have dropped over an entire ring size just since the end of May. You don’t lose a whole ring size just from dropping a few pounds. It takes a significant amount of weight loss to make that happen. Everything I own is loose on me. In fact, the other night I was shocked when able to pull my wedding ring off for the first time in years!

Because the food battle has become so exhausting and completely pointless, the decision has been made to stop trying to force feed a stomach that clearly can’t handle it anymore. Ironically enough, stopping all food has actually lessened my nausea significantly. Still, all it takes is one bite for things to skyrocket again and my food to come flying out, totally undigested, either the same day or the one following. So no food for me. At this point, I have already begun experiencing some hypoglycemic symptoms. Also, my resting heart rate has shot up to 120 bpm. Several other new symptoms have also developed. Needless to say, it won’t be long now.

The biggest issue I am currently facing in all of this is a complete lack of medical care. My most recent post explains some of how this happened. Much more has happened since then, and I fully intend to write a post specifically about that as soon as I’m able, but for now, the basic situation is the same. No care. I am in the process of trying hard to get back into hospice care for this last leg of my journey, and will let you guys know how that turns out. My biggest fear at this point is that my husband and I will be forced to go through this completely alone. Among other things, a hypoglycemic coma is almost certain (assuming my heart holds out that long), and it terrifies me to think of my husband having to deal with that alone, with no doctor or nurses overseeing the situation. This should not be happening in today’s society! But it is. And people need to know it happens, often to the very sickest among us. But more on that in a later post.

For now, I simply felt the need to update everyone on how this disease has progressed, where I’m at with it, and how it is most likely to play out in the near future. Should something happen before I get a chance to write future posts, my mom (who works in the medical field) has promised to take over this blog for me. She will write a post updating everyone on the situation, and has my full confidence in being capable of answering any comments or questions left on posts in the future. I appreciate her taking on this responsibility.

My deepest love and gratitude goes out to everyone who has been so supportive of this blog. Several of you have become good friends, and writing this blog has given me a sense of purpose – something we all need in life. I hope and pray this post finds everyone doing as well as possible. I’ll keep working at adding new posts as long as I’m able, so keep your eyes peeled!

Edited to add: Please check out my subsequent post, Clarification, for a bit more explanation of the history behind my digestive issues and various treatments tried and failed. Thank you!

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…

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