Treating Chronic Fatigue Syndrome (ME/CFS): Low Dose Naltrexone

Anyone try this? Read about it before, but it sounds especially fascinating to me at the moment. And it's CHEAP!

Overview:

Relieves pain

Relieves fatigue

Anti-viral properties (this, I did not hear about last time I saw this, I don't think!)

Helps inflammation

Even helps w/some side-effects of HIV drugs!

Wow. Full story below:

Treating Chronic Fatigue Syndrome (ME/CFS): Low Dose Naltrexone

Testing, Testing...

Yay! The girls are okay! I've been tired since, so it's taken me a couple of days to get to this.

It was a long day. I forgot that I didn't remember how to get there (even though this would be the third time, as I had an ultrasound there, and it shares a parking/driveway with the SSA hearing building where I had to go in May for my hearing) so that got a little complicated, fortunately only involving some stress and getting off on the wrong exit to find the address and enter it into my cell phone's GPS. (It's so hard to imagine life w/o Mapquest, Google Maps, & GPS, isnt' it? It actually surprises me when I stop to think how I used to get around w/all the driving to new places I used to do when I was well and I remember that I used to carry a Thomas Guide in my car and plot the directions on my own! Mind blowing! Haha! Anyone remember Thomas Guide coordinates? Located at H22 in your Thomas Guide! LOL!)

Anyhow, though I will never recommend having your boobs squashed by a robotic machine in every which direction, I have to say that I was pretty impressed by the rest of the experience. There was a separate section of the radiology department especially for Women's Breast Imaging. The staff was wonderful, & all female. There is a separate waiting area after you change into your robe, complete with munchies, tea, cocoa, & water. My radiology tech was a bit on the serious side, but she did keep up a constant chatter, which was a nice distraction, and she was very kind, offering me a blanket, while I waited between tests and while I was waiting for the doctor to look over them, she get me another one, graham crackers, and some water (I'd mentioned I was hungry, because my stomach kept growling). That took awhile, but it was fine, because I was lying down comfortably during the wait, although it WAS at that point that I got a bit nervous and realized I really, really didn't want to have cancer. I got to thinking, and it would mean ever so many more trips to the doctors and hospital, and tests like these, ugh! Yes, I'll stick to the illnesses I have, thank you very much, even if no one gives a damn about them, I can't get disability benefits, help from my loved ones, proper medical care without a ton of effort, if at all, and I'll likely soon be homeless. Wait. Cancer is starting to sound good again. Just kidding.

So I wouldn't say it was a good experience, but I am definitely grateful to the people who thought up these types of centers and all the people who give so much TLC and kindness to the women they serve.

Monday, I'm off to the Neurologist. I'd be looking forward to that, since she can hopefully get me some help and evidence about my cervical spine issues that have been bugging so much lately and SSA misinterpreted, as well as potentially get me some further diagnostics and treatment for the Autonomic Dysfunction. Except that I'm totally broke, and am not sure I have enough gas to get back home after I get there! Oy. Cashflow is definitely going to be an issue this week. As well as being out of gas, I'm running out of vital supplements. Ran out of my probiotics, which has my stomach up in arms. All gurgly and yuck.( I see stomach flu symptoms and many trips to the bathroom threatening.) Also out of my ginger candy for nausea & queasiness (fortunately they take foodstamps for that) so I have to go get some more, I'm gonna need it more than usual... Took the last of my enzymes that were keeping my sinus issues at bay. Oh, and I realized the reason for all that wacky tiredness? Sinus infection, duh. Ever since I started taking the Epivir, my system can keep them at bay (rather than my being knocked on my butt, miserable, feverish, exhausted & tachy) but not quite fight them off. (I'm still tapering it off, so dunno if it's still working or if it's had a permanent good effect on my immune system.) I had gotten my PA to write me an Rx for antibiotics because I suspected I had an infection, but was saving it for if it got really bad, cuz half the time, antibiotics make me feel just as sick as what they're treating. (I hadn't realized that it was probably causing the really bad fatigue, although I had other bothersome symptoms.) So I was all ready to go get it filled finally, but then I realized it costs about $20 more than I have, ugh. My phone is due this week, Mom's b-day's Saturday, electricity next week, and no cash, yikes. Oh well, just have to see how it goes... Hopefully I can manage to sell off some furniture I've had listed. Stupid people keep e-mailing me about buying them then never getting back to me...starting to think someone is just messing with me...maybe those scammers have changed their tactics and are waiting to see your e-mail address (to see if you've told them off before) before they offer to send you that check for $5000 that you just have to cash for them (cuz it's counterfeit)? It's just weird how many responses I've gotten and not one of them follows up!

Well, at least it's been a nice weekend. Ever since I figured out the sinus thing, I gave in and just let myself rest, and best of all, not pushed myself to do anything that requires pushing myself to do it. (Which is just about everything most people do on a daily basis.) Such a luxury...I think I'll go get back to it!

Are Pets a Luxury?

Are Pets a Luxury? | Care2 Healthy Living

Interesting arguments. I think pets need us as much as we need them. I really can't see chihuahuas and pomeranians fending for themselves, around here, or in any other environment. Here, they'd be dinner for the coyotes...cats might fare better, but from experience, not for long. We give them food, they give us love...company, and the gift (for us as well) of loving them back; and yes, sometimes, a reason to get up in the morning, as I'm sure many of us with chronic illness can testify, lol. :)

Funny, not sure if I mentioned it, but my primary care provider actually told me to get one! I miss my kitty so, almost a year now. I wouldn't mind getting a new pet at all, but the allergies make things much more complicated. (For those of you who don't already know, I, like many other people w/CFS/FM, suddenly became allergic to my cat of 10 years a few years bac, my doctor says it makes sense as the part of the immune system that's wiggy in us is the same that overreacts to cause allergies, or something like thatk. Nothing could make me give her up though, it would've been like giving up my child.) Maybe I'll hit the adoption website again and see if I can convince anyone to let me foster a less hairy version...so I can see if it makes a difference (besides, then they take care of all the vet bills, and it would be a good deed, giving them a home until they find a forever one, if I can't cope long-term).

What about you out there, chronically ill or not, feel free to share how a pet has enriched your life! I never get tired of pet stories.. :)

PT, Fish & Tea

Well. Today definitely had some rough patches. I've been having that thing happen again where I wake up and can't stay awake, I have to summon all my willpower to try and prop myself up to a semi-sitting position, or else I fall back asleep so deeply it's like I've lost consciousness, and in fact, I've often debated whether or not I actually do. So that's annoying and been going on for a week or two I think. Usually not a good sign, it's happened in the past when I'm really not doing well, or on my way there.

Worse, usually even if I'm down in the dumps the night before, I wake up okay. I dunno, might it was that I had to answer a call from the doctor right after waking up, pushing me right into overdrive mode. No chiropractor after all this Friday, cancelled, it's a holiday. And I'd realized I had another missed call from them, the transcript of which I didn't understand, so I had to talk to that person too. Which reminds me, I have another phone call, another appointment to make, ugh. Oh, right I'd forgotten. Also an e-mail saying my Internet charge didn't go through, and not a penny more coming in...

So I was grumpy and trying to get ready without stressing out, debating whether to shower or not, that kind of thing. And then I called my Mom for something, she said something that struck a dissonant chord with me (something along the lines about examining what I may have done wrong to bring all this awful stuff on myself) and then I was just fuming, because even though it's totally irrational (unless little kids with cancer have done something wrong and are being punished for it too) of course I've asked myself things like that, more though, like, wondering if this is some kind of karmic payback, in which case there's not a thing I can do but live through this. Still, there's always the guilt, like, I should be able to fix this, I must not be trying hard enough...but you don't need to hear that ish from your own mother...

Anyhow, I was falling apart, feeling like imploding. Like, I'm emotionally, physically, and spiritually so tired, and I feel like I might snap, and where do I turn? But then it was time for my Physical Therapy Evaluation appointment and it was time to pretend to be sane again.

Which turned out to be a good plan. It was just around the corner, so close, and the Physical Therapist was just amazing.

This tiny little thing, cheery, not ridiculously so, but full of energy and on top of her game. Took an extremely thorough history, so much so I realized things I'd never put together before, also gave me some input on the severity of my back problems after looking over the new records/test results I brought with me, and best of all she was interested in the entire picture, not just my problem area, and came up with a plan to try and help with my general well being, not just strengthening my shoulders & stuff, although she wants to wait until I see my Neuro & Cardio docs to have them clear me for some of it. I hope she's not toooo overzealous though, she wants me to start cardio twice a week for 20 minutes...even though I told her I was barely managing 15 minutes and had been planning on re-starting at 10. Well, I will see...I think she's right, I need to do SOME exercise for my well-being. Not just my weight, which continues to go up, but my circulation, muscle tone, and sanity. So that was that...

Tomorrow, mammograph and ultrasound. Yup, they required I throw that first one in with the ultrasound, ick. I've always thought that whole procedure sounded barbaric, but oh well, just another indignity of the female human condition to endure. Besides, if I have cancer maybe I can finally convince the SSA I am sick! No, I'm just kidding, I'm sure I'll be fine. Besides, I feel my case is looking stronger every day...I think maybe something about me has changed, but these days, instead of feeling defensive when I go to the doctor, I find they believe me before I have a chance, they acknowledge that I'm pretty unwell & I've been blessed with a primary care provider that is on top of her game, and willing to do her best to help me, even if it means learning new things, and she even cared enough to suggest I get a cat! Ha! (For those of you that don't know, I had one for 15 years until December of last year, she got sick and passed away, and I'm actually allergic to cats as of a few years ago.) So she suggested a fish, lol. I actually think she's on to something. She convinced me to try doing washing 3 dishes every day, since that's been an issue that's frustrating me. Finally did it today, did 5 actually, lol. Flared my trapz again, badly, but I got to have soup and tea. I was feeling SO tired & stressed, like wired, uncomfortable, so I made some Kava tea, and the stuff is lovely...tastes chocolate-like and relaxes one.Totally got rid of the awful wired feeling. Yay for clean dishes! I so wanted to do more but something is something, right? What kind of fish should I get, any ideas?

Any Tips?

Oh wow. Seriously. I'm looking for tips. I have a dilemma, and it's beginning to overwhelm me right now. I'm just so tired lately. It's a different tired. I think. I don't know anymore. But I think it's different, because I want to sleep. It's all I want to do. I think usually, or at least more prevalently, when I'm tired, I just feel exhausted, but I couldn't sleep if I wanted to. No, this is different. It's not like I'm sitting down and dozing off...but I do want to just do nothing. Got my "food money" today. Had a nice shopping list I made myself make last night, because I'm trying to minimize the running out the last two weeks of the month. Usually I'm rarin' to go. I mean, it's the only real shopping I get to do, lol! Plus I've been low on stuff, and eating lots of unhealthy stuff, and my stomach is starting to act up. I woke up at a decent hour, and mentally wanted to go (mostly to get it over with!) but my body seemed to be saying to take it slow. So I convinced myself I would go out & get breakfast (which as it turns out they didn't have, because, as I found out a couple hours ago, I looked at the wrong chain's website) and bring it home & eat it. My thinking was maybe I just needed some fuel. So I went out, in SWEATS (gasp! No really, that's a big deal for me, my Mom, bless her, brought me up with a healthy sense of vanity, lol) and NO MAKEUP (I at least always wear eyeliner & lipgloss) cuz, after all I was just going to a drive-thru...but like I said, I went to the wrong one, so at a loss for another option, I gave in, swallowed my vanity and went to the grocery store in the same parking lot to get some breakfast food of some kind. I realized I might as well pick up the double gallon of water they wouldn't have at the health food store-ish place I'd planned to do my grocery shopping at, and then figured I might as well get everything I could get there...Then I came home to resume the rest of my plan, but nope. Can't seem to get back out. I did fill out some & fax some forms for my attorney & e-mail them, but for the life of me I can't get my butt out either to the laundry room, or to the store. I just want to go to bed. (Granted, filling out those forms really kicked my butt, Dysautonomia I guess? I felt like I couldn't breathe, and it didn't let up until I reclined my recliner ALL the way back and lay there for awhile. It's like...an anxiety attack I guess is the best way to describe it. But anxiety attacks don't get better just from lying down, so it's gotta be that. Man, I wish I had a doctor that treated just that....

So I don't know if keeping up with all the doctor's appts is wearing me out, or if it's tapering off the medicine that was causing the anemia, or the sudden shift from summer to full-on winter weather or some of all of the above but it's getting old! I'm trying to spread things out and simplify wherever I can and keep organized but....I'm getting overwhelmed! On the days I have doctor's appointments especially (I usually try & run an errand or two while I'm out) I am just desperate to get home and get in bed! My kitchen actually smells from the dishes not being done and I got tired just now doing one so I could have bowl of soup...cuz I'm suddenly freezing, and somehow spending $40 at the store didn't get me anything microwaveable and slightly healthy. I just microwaved it, reclined to write this in my chair while it was heating up, and now I don't even wanna eat it, I just want to go lie down and take a nap. Maybe I will save it for later and take a nap, call it a day. After all, I WAS thinking earlier how I can't wait for it to be time for bed so I can go to sleep and forget about getting anything else done...Maybe that's the answer? I have a doctor's appointment early tmo afternoon, but I can probably find something to wear amongst the clothes I still haven't put away from last time I did laundry, lol. Sigh...Strangely I'm calm lately though. Thank goodness for small favors...
But anyways, yeah, what do you guys do when you feel like a soggy vegetable?

Sleepwalking through Life

I just took half a tranquilizer. I feel so overwhelmed, it's almost a scary feeling because I feel strangely calm, but with undertones that I could lose it at a moments notice...maybe that's what my new psychologist was referring to yesterday when he said I seemed so calm describing my illnesses, my life, and how it's all affected me. I was tired, and getting to his office 20 minutes away by 1pm took a lot of planning and will power. I think THAT'S the problem. I am running on pure will power lately, so it's bound to make me a little zombie-ish. Have to, have to, have to, must do... I feel like I just need a few days, a week, of doing NOTHING, of everything being easy and effortless. I've been keeping busy. Trying to have a social life, because I don't think I'll make it without one; I can't keep wishing my family would be there for me. I need people who have the capacity to give a damn. But the cost is high. So exhausting.

I'm tapering down on the anti-viral, as per my doc's instructions, and I'm starting to get sore throats again daily, and hoarseness, feeling like I'm coming down with the flu, but then it goes away. (And comes back, the very next day.)

Pain is back full force. It's a whole new type of pain, that makes the aches and pains that (fortunately) were the whispers that I'd learned to live with from the Fibromyalgia seem insignificant. I feel like I have lobster or a scorpion attached to the top of my spine, I swear I can feel the vertebraes; they hurt and they are wrapped in barbed wire, making the skin around them raw and sending shooting pains to random areas of my upper back, almost to my armpits, and sometimes down into my fingers even. I can't even get comfortable lying down much of the time, and my recliner was off-limits until right now. And normally I need to lie down often...Fine, I'll adjust, I'll stay upright longer to ward off that discomfort, but then I start looking for things to do, which is easy, because there are dishes and laundry, but then, if I do those, it will aggravate my back. Catch 22. Yes, I've been pulling out every trick in my dusty pain-management archives of my brain...heat, no, ice sometimes, capsaicin, when desperate and willing to risk the stomach effects, daily anti-inflammatory, shiatsu massager if tolerated, TheraCane for what that doesn't get, an extra muscle relaxer or more than one narcotic class analgesic a day, which I usually would hesitate to do...Fun times are here again! lol. It's ok, I'm seriously laughing, what can I say, maybe my therapist is right and I am getting somewhat Zen? Sometimes? What can I do, one must keep on keeping on, or so they say...

I'm waking up SO tired again. I've slept till 1pm twice this week, and still woken up tired. So much to do at the beginning of the month when I get my little government check. I desperately have wanted to do nothing most of the week and inevitably find that there is something I HAVE to do. Doctor's appointment's to keep. Oil to get changed for the Smog Check I can't afford for the Registration I also can't afford. And then I know telling the shrink that my very soul is tired was right on, because making myself go back out to get some food (can't cook with all the dishes dirty) after 20 minutes of indecision so bad it almost drove me to tears, I pull out of my carport and tear off my sideview mirror on a pole that's always been there, which as it turns out, makes driving so much harder, and adds more money to the things I can't afford but must somehow come up with column. (No, not to worry, I wasn't on any medications I shouldn't drive on at the time. Just a fully natural daze I guess. Plus the neighbor parked her car too close to mine, making me veer to the left myself after pulling in.)

Now reality hits. How the hell am I going to get through all the doctor's appointments I have scheduled for myself this month? (They do kinda have to be now, case is waiting for it) 2-3 a week for a month, topped off by Thanksgiving and birthdays all around, for myself included. Thank goodness the Physical Therapy is right around the corner, but still, I'm not used to being out & about and having places to be feel good or not, so it takes far more out of me than it should. (Or else I'd gladly volunteer, that dilemma is what keeps me away from that, as well as school, so exhausting to deal with letting people down. Right now is about survival, I think that's enough, no?) No, people aren't as much a challenge as they used to be, I was a much bigger recluse last time I had PT regularly. Then, I was just so happy to be around people my age, such a rarity, and they were good-looking, chatty, and gave me massages & made me feel better! And thank goodness because I was becoming a bit tooo eccentric!

Lately I've been graced with kind people and easy conversation almost everywhere I go, now that I think about it. I was actually able to have a slice of pizza at Costco, completely relaxed one day recently, just people watch and feel completely calm and at ease...was it the Pharmacy Tech that shared his experience with the two Capsaicin creams I was trying to decide between? The smile and gracious politeness of the checker, or the easy conversation with the pizza girl? Maybe my energy has shifted and they are just reacting to that. Whatever, I'll take it!

It's later, lately, when I get home, that I can't turn it off. Everything is going but deep inside I'm so exhausted and somehow I can't stop the overdrive and it's hard to handle. Life seems like a big storm of chaos this month, and I'm expecting surprises to boot and there's nothing I can do but walk through the storm, and see what I encounter, hopefully stay in the eye for a bit when I can.

Good news is, I haven't gotten AS sick as I'd feared getting off the anti-viral, though, strangely, supplementing with Zinc seems to be helping a great deal (just ran out and already noticing the difference, ugh) and the Nattokinase & Indole 3 Carbinole supplement I took seem to have done the job, very slight discomfort this month, compared to last, for a much shorter time (although I was on various analgesics before & at the time) and also hardly any worsening of autonomic function, just bit of dizziness, but not even almost completely blacked-out-eyeball-squeezing, headache-inducing kind. Well, I'm sleepy, which is happening early a lot lately, and I'll take it. Going to see a Chiropractor tomorrow, yay? My head keeps telling me this will likely help, even if painful at first (I usually feel like my back is in pieces when I get an adjustment after not having one in a long time, and then better later) but I've never had quite this type of pain before, usually it's muscular, this seems to be all bones and nerves so I'm a little scared. Whatever happens, I MUST get to Costco sometime tomorrow, too, running out of essential meds & toiletries, ugh, wish I could do home delivery! And that damned mirror...Oy. A credit card and someone to help me run errands would be SO handy right now...