Long time away…

My goodness. It’s been nearly two months since I last posted. So much going on…

Knees. Oh my god. My knees…

Last summer I got Orthovisc injections in both knees to deal with arthritic pain. They worked miraculously. At the same time I was into my water routines. Between the two I was doing extremely well physically.

Then time happened, as it inevitably does. The injections wear off in six months. Mine lasted seven, then I had to suffer another few weeks waiting to get in for an appointment. Unfortunately, this time they didn’t take. I still wake up in the middle of the night with burning knees. And to move them is absolute agony. Walking any distance — well, it’s remarkable that I do it at all.

Now, I had gotten rebellious about my water routines. That’s just part of my personality. At some point I just HAVE to mess with routine. So I hadn’t been keeping up with the very rigorous schedule I had before. Unfortunately, several weeks of trying that again have gotten me nowhere with the knees.

Which means I’m gonna have to have knee replacement surgery. God help me, I don’t want surgery. The down time means I can’t work, at least not as a nanny, and that means I don’t get paid. Then of course there’s also the possibility the surgery won’t work, or will make it worse (it happens — rarely, but it happens). And for me there is the special concern about scar tissue. Not external scars (who the hell cares about that?), but internal scars. The neuroma surgery I had on my right foot in 2004 created scar tissue that actually made the pain worse. Took quite a lot of physical therapy to get that foot back to usable order, not to mention a near miss with an ortho surgeon who was going to do a second surgery, but I bailed on that because her personality made me very uncomfortable. A third opinion by a podiatrist said another surgery would make it worse, because what I was dealing with was not a regrowth of the neuroma, but scar tissue instead.

Work. 

Doing the nanny thing has been fun. My job (after school care) is coming to an end because my employer is a school teacher and will be home. I am committed to coming back in the fall, but I need income for the summer. Summer nanny jobs usually involve full days, beginning in early morning, and they want “energetic” folks who will be active with their children. Well, I WOULD be. I LOVE playing with kids. But as much as I WANT to move my body, I just can’t.

I haven’t even been able to get out much to do my photography.

I have put out feelers on an academic listserv, thinking I might go back to editing and manuscript preparation, at which I am very very very good. Though I am petrified that the cognitive issues may interfere. It is very exacting, detailed work. Well anyway, I received a significant number of inquiries in response to my post, and it could very well be that I will be able to replace the nanny job income with a couple of dissertation editing jobs. The pay, of course, is significantly better on an hourly basis. I have to be careful that I don’t go over the $1,000 monthly limit for work income with SSDI. It has the added benefit that I can do the work even if laid up recovering from surgery. That is, as long as my brain doesn’t fail me, as it does all too often.

Overall pain.

It’s worse these days. Then again, I haven’t kept up with my water routines. I am working up to that, and with the end of May will come the opening of the pool in my apartment complex. Which means I will have many more schedule options. I can even do it late at night, up to 9 p.m., under the stars.

I’ve been on Oxycodone for about 5 years, at the same dose. Used to be I’d have quite a few left over at the end of the month. Now I have to count them out very carefully to make sure I don’t run out.

I have an appointment with my pain management doc Thursday morning. Hoping he will have some new ideas.

Gastrointestinal issues.

OMG. Don’t want to get into the messy details on that one. Have stuff going on at both ends. On the front end I’ve developed swallowing difficulties, no doubt related to the Sjogren’s. Certain foods, like rice, stick and take forever to go down. I’ve been close to passing out with that more than a few times. So rice is off my menu, even though I love it, and of course, it’s cheap. These days my grocery bill is $100 a week, just for me, because of all my food restrictions. And I can’t go to the food pantry because most of the foods they have there, I can’t eat.

Upside of the swallowing difficulties is that I feel full most of the time, so I’m losing weight.

Diabetes

So far, so good. Under control. Was even released by my diabetes educator from having to take daily glucose readings, since they were within guidelines 95% of the time. So that’s one bright spot.

Sleep schedule

Another bright spot. I’m now going to bed (and sleeping) on average between 11 p.m. – midnight and waking up around 7-8 a.m., by alarm. Sometimes I wake up earlier naturally. I’m sure THAT has something to do with the bright morning sun we get in the summer time. I also wake up several times during the night — those burning knees, damn them! But I do get back to sleep eventually, mostly by not worrying about the fact that I’ve awakened. If I sleep, I sleep. If I don’t…well, that’s what Netflix and Hulu Plus are for!

I have two alarms set, one for 7:15 and one for 8:15 a.m. This is because I can’t take all my morning meds at the same time, or I will end up barfing all morning. I have to take my thyroid pill on an empty stomach, so that and the lasix come first. Then at 8:15 I get to take the oxy. If the pain is really bad I reverse them. I may or may not get out of bed just yet. Especially if I can hold that bladder longer…

Because of the pain (knees and overall), I’ve let all my housework slide and I am living in chaos. That needs to change.

…ok, that’s it for now.

I could have “thought” all day….

I do my best thinking at the swim pool. Today I “thought” (and swam/worked out) for 2.5 hours. I could have gone even longer…. I just wish that when I got home I could get all those wonderful thoughts out. But instead I futzed around with Facebook!

Today I developed several new exercises, all of which could be used by competitive swimmers and other athletes, as well as folks with fibro/chronic pain. Well, the fibrofolks need to get through the easier stuff first. But eventually – hell, if I can do it, anyone can!

As I said to someone at the pool the other day who told me, “I could never do that!” — What you mean is, you can’t do it YET.

I’m using my Reebok weighted balls for these exercises.

One requires a weighted ball and a pair of 5-inch “air” balls. (“Air” ball to distinguish from “weighted” ball.) In shoulder-depth water, drop the weighted ball to the bottom, and stretch your arms out to the sides, holding the air balls at water height. Wedge the weighted ball between your feet and lift up and out, balancing and supporting your weight in the water with the air balls. After stretching out completely with the weighted ball straight in front of you, you bring it back down. The arms and air balls move forward when you bring your feet back down.

I know. I know. It sounds really hard. But it isn’t once you’ve built up the strength through other exercises.

Another, easier one, requires the same set of balls. Drop the weighted ball on the pool floor. Stand on it, using the air balls for balance. Keep working on the balance until you can stand on the weighted ball and lift your arms up out of the water. Keep practicing and lengthen the time you can stand without dropping your arms to the water again. You can also “walk” on the ball, rolling it as you move.

A third and much harder one involves the same set of balls, and you pick the weighted ball up with your feet again, but this time instead of bringing it down to the pool floor, you swing it with your legs behind you, then pull it forward again.

Yeah. Really REALLY hard. But remember, there’s no way I could have done this back in July when I started!

Some of my thoughts while in the water:

Considering my extensive (20 years) of coping with fibromyalgia, and a cascade of other subsequent diagnoses, all the classes and workshops and physical therapy and therapy therapy I’ve had, I’ve earned at least another Ph.D. Well, without the strain of producing a thesis. Which, actually I could do if I were so inclined to go through that agony again!

But I’ve got at least a book, if not two – one focusing on the cognitive/behavioral/emotional experience and skills and another focusing on the pragmatics of physical exercise with chronic pain.

Those each would have more profit potential than the half dozen novels I have sitting on their electronic “shelf” in my computer.

And I could take a cue from Dr. Laura and use my existing Ph.D. to confuse the hell out of people.

Ah no. I have too much integrity for that. I would use it and explain it immediately, not let people think I am somehow a medical doctor or even a psych doctor.

Ahhh. So. To begin with, here’s my fibroblog!

A new direction – taking my exercise program public

Ok ok. It’s been nearly a month since my last post. I’m still not making any progress with re-establishing the bedtime ritual. I think I set myself up for failure with the blog by creating a pattern in the beginning that required a daily report on that progress. No progress. No posts. So it’s time to take this in a different direction.

Especially since I have so much that is positive to report!

The biggest news is that I am going to be teaching “test classes” at the local pool during winter break, demonstrating my water resistance exercises to others who suffer chronic pain how they can improve just about every aspect of their lives.

Since I’m at the pool every day anyway I figured I’d use some of my pool time for the classes. The Verona Natatorium is open special hours during the day during the post-Christmas week, so I will offer it every single day, at varying hours to accommodate varying needs. I got the approval and enthusiastic support of the pool director today.

When I started developing these routines at the end of July I could barely walk, and I had to use a cane to maintain balance. Getting up and down stairs was a real bear, and getting up out of a chair was a project every time. My pain levels from fibromyalgia, spinal stenosis, and severe arthritis in my knee were barely tolerable.

Today I can get down on the floor and back up again without support. I do stairs the way normal people do, and getting up out of a chair is a breeze. My heart rate and BP are excellent, and my diabetes “numbers” are also. I’m emotionally stable and happy — the upcoming holidays don’t faze me a bit! I’m using far less pain medication as well.

I’ve lost 20 pounds and 7 inches of belly fat, as well as 3 inches each off of my chest and hips.

This improvement is nothing short of phenomenal.

I am really looking forward to teaching this all to others.

Bedtime Ritual – Day One (Starting over)

Yes – it has been more than three weeks since the last time I posted. So much interfering with both my efforts to establish the ritual and my ability and inclination to write.

The ritual and the writing go hand in hand. Without one, I cannot do the other.

Some things I have learned from this process:

#1) Fibromyalgia and routine are two opposing forces. On the one hand, the pwf (person with fibromyalgia) needs routine most of all because it helps so much with the brain fog. It is so much easier to remember what you are supposed to do when you do it at the same time and in the same manner every single day.

On the other hand, fibromyalgia itself defies routine. I was doing reasonably well until the new pains hit (back, hip, thigh pain; along with the inexplicable tongue pain and “electrical” shocks). Neither condition in fact is related to fibro, except perhaps indirectly. But that indirect relationship is forceful. Fibro deconditions you and makes you susceptible to many other chronic conditions. Most pwfs also suffer, like me, from severe arthritis and spinal stenosis. I am finding, also, that diabetes isn’t far behind. Experiencing so much pain on a daily basis makes it extremely difficult if not impossible to engage in an active lifestyle.

Once a flare hits, or new pains emerge (whatever the cause), whatever you were doing or trying to do before simply falls by the wayside.

With these new pains it was all I could do to just keep putting one foot in front of the other.

#2) The medications the doctors give you are often worse than what you are being treated for.

I was first given prednisone. This helped the pain tremendously. Well, it helped the back/hip/thigh pain. But on the 7th day I started regaining the 20 pounds I had lost. On the morning of the 10th day, I took my “fasting” glucose reading. It was a healthy 104. Wonderful! Two hours later, after taking the prednisone, I took another reading. I had not eaten a single bite. I wanted to see what the prednisone would do to my blood sugar. It was a whopping 180 – a reading barely tolerable after a full meal.

That morning’s prednisone was the last one I took.

I was switched to neurontin. Neurontin helped with the back/hip/thigh pain at 100 mg 3x day. But it didn’t do a thing for the tongue pain, and that one was driving me crazy. Saw a PA at my pain doc’s office & they ordered a head MRI and told me to up the neurontin to as much as 600 mg 3x day. 300 mg, however, nearly knocked me out completely. Well thanks, but no thanks. Sure, the pain wasn’t bothering me…because I was sleeping all day. Not much of a life, plus I needed to be awake for my nanny job! I had already cut out the afternoon’s dose so I could be reasonably awake for the kids. But that meant not doing much of anything else.

So I stopped. Cold.

#3) Exercise helps. It REALLY REALLY REALLY REALLY helps. All the while I was running through the medications, even during the worst of my pain, I kept up my swim/water exercise routine, increasing it from an hour to an hour and a half, and increasing the intensity of the exercises. Believe it or not, I can now water walk without a flotation belt carrying a 6 pound weighted ball ABOVE the water from the deep end of the pool to mid-length (12.5 meters) without stopping.

And even though I stopped taking the neurontin completely, my back/hip/thigh pain is….GONE! I still get an occasional tug on the thigh, but I am walking without assistance of a cane, walking normally, walking even up and down stairs, and….

I can get down on the floor and back up again without needing support of any kind.

You heard right.

People with fibro and other chronic pain issues know how utterly astonishing that is.

#4) If at first your doctor doesn’t have a clue – use the internet (that’s how I found out about diabetic proximal neuropathy and trigemenal neuropathy). If at second your doctor doesn’t have a clue – use the internet.

The PA I saw at the pain clinic sent me for a head MRI to find out what was going on with my tongue. She said my symptoms were inconsistent with the usual trigemenal neuropathy presentation. (She is also the one who upped my neurontin.) Well, I had the MRI, and it was totally normal. They thought they were giving me good news when they gave me the results. I said all that tells me is that you know what it ISN’T. And you DON’T know what it IS! And it was STILL driving me CRAZY!

Anyway, the doc came up with a new referral for me – an otolaryngologist. But the earliest I could see him was…DECEMBER 9. Oh gee. Thanks.

In the meantime I decided to do a bit more internet research, and came up with another explanation. It seems that various tooth whitening products can cause this horrid tongue pain. I had been using Crest whitening mouthwash. Hmmm. Well. So I stopped using it, and lo and behold, the tongue pain has diminished to tolerable, and I suspect it will go away completely after a while.

So – predisone: gone. Neurontin: gone. Back/hip/thigh pain: almost completely gone. Tongue pain: on its way out. Weight: back to 15 pounds weight loss, the other 5 hopefully are back on their way out. And more to come (fingers crossed).

And finally I can begin to write again.

Bedtime ritual – Days 27-29 – limping along

Another three day hiatus.

Trying to get back to the ritual but having a hell of a time disciplining my inner child!

When I got back from my swim at 7 I was really exhausted. I’d spent most of the day doing laundry at my daughter’s house & just sort of being there for the kids while my daughter was off on some photo shoots (she’s a professional photographer). There was no school because of an almost week-long teacher conference in the district. That meant I had time off from my nanny job, but I’d spent extra hours on that job the day before.

Now, I love my nanny job. The kids are really easy. The hard part is getting them to get out and do things instead of plopping in front of the tv, watching mindless cartoons. I don’t HAVE to do that. My boss is ok with me just sitting with them when I’m not feeling up to snuff. But that gets boring really fast. I am getting paid very well and I don’t like just sitting around!

Wednesday I took them to the library, and had my youngest grand daughter with us, to give my daughter a bit of a break. I was really surprised at how Annika and the boy took to each other like they’d been friends forever. Good to know they get along so well!

Hard part of that was when we got back to the house. The family has a big dog, a BIG and very energetic and enthusiastic dog. Annika is not comfortable with big dogs jumping all over her. Scared the heck out of her. The older girl had problems understanding why Annika was so freaked out. But for Annika, everything is always bigger than life. She’s highly sensitive and emotional, and having experienced what she did with her father’s suicide heightens everything as well. So I have a challenge before me: first, to help Annika become less afraid of the dog, and to help Hanne understand Annika.

Hanne ended up taking the dog for a walk while Annika and Erik played in his room. Then the challenge was to get Annika to accept leaving when the mom came home!

It will work out. And Hanne will learn a lot from the way I am handling this. Stay calm. Don’t force anything. Put yourself in the other person’s shoes. Consider all your options and find one that is workable for everyone. We will plan ahead for the next time I have the kids together.

There’s another “but” to the “I love my job” statement, and that is of course that it cuts into my day. If I’m particularly groggy in the morning and slow getting myself moving, I have less time to get things done. And so the blogging ends up low on the priority list.

Right now my brain is barely functioning. I’m back on the prednisone for the nerve pain. Though that means less pain, it also means less sleep, because it makes me hyper. So I’m back to taking 25 mg Seroquel for sleep, which increases the fog factor. I’m also starting to add weight back on because of the prednisone. ARGH! The carb cravings have come back with a vengeance. Ate nearly half a gallon of ice cream last night at bedtime. Terrible thing to do. Counterproductive for many reasons, not the least of which is that glucose control is central to relief and recovery from the neuropathy. So today I’ve resolved to get back to making better food and drink choices, starting with peppermint or ginger tea instead of ginger ale.

Need also to stop deviating from my bedtime routine. I did turn off the tv at 10:30, but then I was at the computer & got caught up with that again. Working on photos, facebooking, etc. Shut that down at 12:30, took a shower, got into bed at 1 a.m., but then my rebellious inner child flicked on the tv again. There wasn’t even anything I really wanted to watch. More crime tv reruns that I’ve already seen many times over. Or ones I never wanted to see in the first place.

I kick myself for having signed up for a 2-year contract with Dish TV. As soon as that is up I am dumping cable altogether. I will stick with Netflix and also go premium with Hulu. That will save me a lot of money, AND I’ll have better options! I am so tired of paying for tv that I don’t watch and for tv I wouldn’t watch if I had other choices!

I think I fell asleep somewhere around 2 a.m. and woke to an 8 a.m. alarm. Finally crawled out of bed at 10:30. Pain, exhaustion, fog. But I know how to deal with this. I just need to find the strength to do it.

Diabetic Proximal Neuropathy

This is it. This describes EXACTLY what I’ve been experiencing the last few days. Unfortunately, although my swim last night was very helpful, it offered only temporary relief.

As indicated in this article on Diabetic Proximal Neuropathy, the worst experience of the pain is at night. God bless. Of course! I didn’t have enough already to disturb my sleep. Must add to that this absolutely excruciating pain in order for my life to be complete.

Worst case scenario is that this will last up to two years, with pain bad enough to put me in a wheelchair. Best case scenario is that it lasts only a year and all I need is my cane.

Hoping against hope that my swim regimen, already established, will shorten that and reduce its intensity.

Hope. That thing with feathers that perches in the soul, and sings the tune without the words. And never stops at all…(Emily Dickinson)

Doc prescribed a 5-day dose of prednisone, but I don’t think she really knew what she was doing with that. She was going to give me pure Oxycodone (no acetomenophen) to add to my existing dose, but I mentioned that I’d gotten excellent relief before from cortisone shots. I was thinking that this was just an arthritis flare. She misheard me and prescribed the prednisone (pill). When I corrected her she stuck with the pills, saying it’s a systemic approach rather than localized.

I’m supposed to call Thursday morning if there is no relief.

But after reading up on proximal neuropathy I could tell immediately that arthritis was unlikely as a cause for this extreme pain. The main difference, aside from the intensity, is the anterior thigh pain. That I have never had before, and it is specific to this particular form of neuropathy. It is nerves, not joints.

I don’t understand how I could have such a serious development with diabetes when I’ve only been diagnosed diabetic for a few months. And I have my glucose under control after just  a few months with adjusted diet and the addition of a rigorous exercise routine. But it’s right there, staring me in the face.