Picking Up

The last month has been – strange.  Very good at times, not so good at others.  Let’s see if I can recap.

I started Lyrica.  It seems to be helping.  I still hurt all the time, but I have more days of functionality.  I can get more things done before I have to crash. I do sometimes still crash though, and crash hard.  One of the newest developments is back spasms.  For a long time now, I’ve had this one muscle in my lower back/hip that has always been the area that hurts the most.  I thought that maybe a muscle relaxant might help, so I asked the doctor for a prescription for Flexeril, which I received.  It didn’t seem to help a whole lot though, until… I woke up one day and literally couldn’t move.  The pain woke me about four in the morning, and I couldn’t sit up in bed to get out.  I laid in bed, trying to relax it, until about seven, when Murphy woke up, and I called to him to get Dad because I needed help.  Somehow, with a few screams and many tears, he helped me get to a standing position so I could get to the bathroom.  You never realize how your muscles interact until something like this happens, how every movement you make uses muscles you wouldn’t expect.  Anyway, my wonderful guys got me set up in a comfortable chair with a heating pad (thanks to the Ojai Unconditional Give or Take Facebook page), my Flexeril, knitting, coffee and a cane, and they went off to school and work, and I sat there, willing that damn muscle to relax already.  It did, slowly; by the next day I was mostly fine, except a lingering reluctance to move too fast, in fear that it would spasm again, and a residual ache.  I can’t remember if I blogged it, but I did see the Physical Therapist for an “evaluation” to see if I am eligible for service, according to Gold Coast Medicaid.   In fact, I saw him several days prior to the spasm, and I wondered if it spasm-ed because of the manipulation he’d done (not blaming him; there’s something wrong there and it needs manipulation to be fixed).  Anyway, I haven’t heard if I’m eligible yet.  Really hoping I get at least a few visits.

Every now and again, since I started the Lyrica, I have a day like this past Sunday.  I woke up full of energy, not much pain, feeling very much like my old self.  I got a lot of things done that have needed doing for a long time.  Of course, Monday, I woke up sore all over.  But not horrible, which is what usually happens.  Then I settle back into a medium point of  a fair amount of pain but not so much I can’t say, make dinner.   I still have some very troubling symptoms that my doctor has NO clue about and is therefore sending me to more specialists… a daily afternoon tremor/shakiness that is sometimes severe and makes me anxious, which he finally saw and documented, so I go to a neurologist, and a trouble swallowing that he’s sending me to a GI guy because the ENT referral which is like three months old already still could take months more. So all of that, plus (oh joy) my first colonoscopy scheduled this month, means I’ll be getting a lot of sock knitting done in doctor’s waiting rooms.

The Lyrica overall does seem to be helping but there is one concern; it’s making me ravenous.  It’s breaking down the walls I had built around my eating; I’m starting to eat compulsively again and in the month I’ve been on it I’ve gained almost ten pounds.  My vegan lifestyle is breaking down. It’s really been incredibly hard to stick to.  I slip in a chicken nugget here, chicken breast for dinner one night; and I even swiped a couple of my son’s cheese sticks to snack on, the one place I really didn’t want to go.  I’ve got to work on some way of mitigating the compulsive feeling.  Very troubling.

In other than health related news, I’ve been busy.  I’m trying to get out more, get over my people phobia and make some friends.  Through Ojai Barter Bin (another FB page; Ojai has lots!) I met a really interesting woman named Laura.  She and I have a lot in common; the way we think and our values, but a huge difference in life experience.  She spent most of her adult life in Japan, and only moved to California a few years ago.  I really enjoyed the night we spent coloring her hair (that was the barter.)  She’s a little guarded though, and I have a tendency to rush in, so I’m trying to hold back a little, let things progress at her pace.  I’m meeting a lot of people online, and hoping to meet them in person in Ojai at various functions, including a little Occupy Ojai type protest at BOA this weekend.  Bunch of Ojai hippies!  =]

My business is starting to percolate a bit too.  I have currently a small class of kids that I’m teaching about fiber, sheep to shawl kind of a class, and I had an inquiry last night for another.  I’m selling some yarn, and some socks. The name change to Valley of the Moon Fiber Works was helpful, I think, and I’m learning how to get the word out through all kinds of social media; Betterfly, the Ojai Wall, a Facebook page for the business, and word of mouth through FB friends.   Ambitious, but it feels good.

The family is doing well; Peru is playing around town with the band 33 North, and they have a regular gig at The Wrec Room on Thursday nights.  He’s busy with the Montessori kids; they love him.  I joined the Parent Group and may be Room Mother for Murphy’s class, and at the meeting when I said my name they all started talking about how much their child loves Mr. Bob.  It was really cute.  Murphy is playing soccer and is goalie this year; he’s doing really well at it too.  He’s in middle school now (unbelievable!) and loves that too, though having the homework schedule be different this year is taking some adjusting.  He’ll get it though; he’s so smart.  Eric is acting; he’s helping Mr. Slade with the High School production of Romeo and Juliet, playing Friar Lawrence, I believe.  The performance is in December; I can’t wait to see it.

It’s been an emotional roller coaster, but then, I guess it always is.  I’m so grateful to the Beloved, who helps and supports me in every way, all the time, and never indicates a bit of resentment or frustration with my ups and downs, or with the slack he has to make up, and beyond that, still loves me more than I ever expected was possible.  I am a very lucky woman.

My Day

Haven’t posted since getting back from Ohio. Had several weeks of recuperating, a day or two of decent health. Murphy went to camp, which I’m going to write about in a more pleasant post, but this, unfortunately for you, Kind Reader, is not going to be a pleasant post.  This post is about My Day Today.

So, here’s my day.

I wake up early, and as usual, my laptop won’t connect to our internet somehow.  I can’t figure out what the problem is; sometimes it works great, other times it connects for two seconds, then disconnects over and over.  It’s not the ISP; all the other computers in the house work fine, so it’s something in the way my laptop communicates with the router.  Go figure.

I take my handful of meds with my coffee and breakfast and go to take a shower.  I’ve been heartbroken about  being out of my favorite soap and shampoo, made by Lush. Fragrance is Karma, a blend of patchouli and orange, which is strange because while I love patchouli, I hate orange.  But it works.  Anyway, on a whim, I look under the other sink in my bathroom in the box I keep my Lush treasures in, thinking there might be a sample of something else in there, and what do I find?  TWO bars of Karma shampoo bars.  I leave it to you to visualize the dancing of the happy dance naked in the bathroom, or not, as you prefer.

I take my shower, no mean feat for me. Taking a shower wipes me out, but I’m bright and shiny simply because of my Karma. I get dressed and go to work.

That’s where the trouble begins.  My boss, BR, is not home, and her fiancee is, and obviously torqued off. They’ve been having issues lately, trying to see if they can save the relationship, and I think uh oh, maybe not!   I sit down at the desk and sigh. The desk is piled HIGH with disorganized miscellaneous papers.  Bills, mail, lesson notes, club info, catalogs, checks and payment receipts, tons of stuff to sift through before I can even begin to figure out what I need to be doing.  There are three companies that I’m doing bookkeeping and administration for, each with a clearly marked inbox, yet only about half make it to the correct box. Of the remaining half, half go in the wrong box, and half are strewn all over the L shaped desk.

So I wade through the papers as much as I can.  It’s so awkward for me because there are hundreds (literally) of notes scrawled on the backs of envelopes, on lined paper torn from legal pads, on torn up recycled scrap, all over everywhere, and I don’t like to mess up her piles,or delve too deeply into what it is, because I don’t know what’s personal, what’s confidential-none-of-even-an-admin’s-business, and what is stuff I’m supposed to deal with.  I do my best and after about 40 minutes, I have a little bit of a clue; well, I found the mail, opened and sorted it, and figured out what bills need entering, as well as cleared a small work space.

I begin doing my thing, and run into the next snag. The printer was out of cyan ink for weeks, and hooray! they finally installed new cartridges!  But the  *%&$(+ HP machine (or the computer, actually, now that I think of it, it has to be the computer) still thinks the cyan ink is out.  Despite the lovely ink indicator widget that shows it’s full. I have a work around that manages for a while, maybe an hour or so. BR comes home, obviously torqued off, and in a rush, because a client is at the door.  She needs copies of the intake forms, which I manage to print for her, and she asks for several more copies for later. I start trying to diagnose the problem.  I align the cartridge. I clean the print heads. I check there’s no tape over the thingys.  I reboot the printer.  I re-install the cartridge through the program on the printer.  Nothing works.  I try the help forum on HP; astoundingly unhelpful. I finally decide to reboot the computer.

Disaster.  The laptop will not boot back up. I try and try and try, for fifteen to twenty minutes, same thing every time; the computer stops booting really early in the sequence.  Finally, radically, in an effort to NOT have to take the laptop to the repair shop, I try accessing the BIOS during boot up- it works!  Get to the BIOS menu, continue boot up from there, and magically, it works.

By this time, it’s almost time for me to leave. I tidy up and write BR a note.  The same note that I’ve now written three times.  I need her bank statement from May, in order to reconcile her account. That’s right, I said MAY.  Her bank account is online, and if I ask her to log in while I am there, she gets all flustered and upset and can’t remember how to log in.  So I’m trying to get her to print it out for me when no one is looking over her shoulder. You need to understand that BR uses her debit card for EVERYTHING and keeps no record, so at the end of the month I have to enter a hundred or so individual debits into QB to keep her account equal to the bank.  Now, add to all this knowledge the fact that she pays in and out of ALL THREE separate companies; a trust from her parents, her personal, and the business account; she pays in and out of all three accounts sort of indiscriminately.  No funny business at all, don’t misunderstand, just a disorganized mind and a poor understanding of accounting.

In the note, I also ask again about the mortgage bill, which here on the 6th of the month, I have not seen yet (due on the 1st).  She has no clue.  She will go and pay it at the bank, with a check I will have no record of, and I will also have no record of the principal vs interest on her adjustable rate mortgage to post. Sigh.

So, for three more-complicated-than-they-need-to-be accounts, I work three hours, twice a week.  How much can I realistically get done?  Pretty much the only productive, necessary thing I got done today was putting the business deposit together to take to the bank.

The one good thing about the work situation is that both of them, BR in particular, don’t usually take their stress out on me; they speak civilly to me at worst, and nicely most of the time, but seriously, the tension in the house is ungodly. I’m so glad they don’t have kids.

So I come home.  Too tired to go to the bank, and not enough time, really. I get a phone call from Murphy’s school; they want me to come work for them. Gratis, of course.   Dear god.  Really? You’re going to do this to me now?  They need someone in the office two days a week, 8 am to 2 pm  and since we’re applying for a scholarship and all….. I’m freaking out; first of all I’m driving, and I hate talking on the phone while driving, but when I saw it was the school… well you know I’m a catastrophic thinker.  I’ve got all these thoughts in my head – what if this is a threat to our scholarship?  Why, just when I was getting some bites on paid fiber ed jobs?  Why, when last week I couldn’t even walk without a cane and my brain is turning to mush besides?  But maybe if I was volunteering, it could turn into a paid position, and she even said as much, and how cool would that be?  I explain my situation a bit, and say I’ll talk it over with the Beloved and get back to her.  And I’m home.

I have a doctor’s appointment at 1:30.  I’m famished, but the only quick food at hand is tuna salad, and I took pity on the poor doc and opted for rice cakes and vegan cream cheese. Tidy myself up, leave, and am at my appointment 10 minutes early.

Now, I take the 1:30 appt because it’s the first appointment after lunch, and theoretically, they shouldn’t be behind. So, I sit and wait, and knit, and sit…. actually, today the wait actually wasn’t bad, only about 20 minutes or so.  From the appointment time.  I limp in to the prep room, get weighed (if you had an appointment every day, they would still weigh you.  Drives me nuts.)  I note that I have gained about four pounds in two weeks; partly due to fluid retention, and partly due to old habits slipping back in.  I’ve been so stressed, and so immobile to fix my own meals as much, that I’m starting to make poor choices again, which feeds more poor choices.  This has to stop now.  They take my blood pressure, 120/90.  My diastolic tends toward the high, but no one in this office has ever even commented on it. Mostly, it hasn’t been that high, but like I said, I’ve been under a lot of stress lately.

I head towards the exam room; they asked why am I here?  Duh, cause he told me to make an appointment for two weeks last time!  I give the poor nurse a break and say for Fibromyalgia follow up.  She asks my pain level, and actually, it’s not horrible, so I say 6.  She says, the doctor will be in shortly.  So I sit, and I knit, and I sit, and I sit…. The longer I sit, the more my pain worsens. I do focused breathing while knitting, and it helps a bit. Finally, the doctor comes in.  He’s pleasant, as he always is.  I do note that since I took my husband with me, he does seem to take me more seriously; don’t know if that has anything to do with it, or if it has more to do with an actual diagnosis by someone he thinks is smarter than him, but either way, it works.

He asks “What can we do for you today,” and again, I think YOU wanted me to come in. I ask about the ultrasound of my thyroid I had last week, and he’s flustered, he hasn’t seen it. I ask about the status of the consults I’m supposed to be getting: ENT, GI, PT, Rheumatology; again, he knows nothing. I ask about the preauthorization he was going to get for my thyroid med that is no longer covered, and the Lyrica we wanted to start; again, nothing. He says “you haven’t heard anything?”  I’m supposed to hear?

He goes to check on those things with the nurses in the office, and I sit. and knit, and sit. While I sit my doctor visits two other people and a pharmaceutical rep.  I know that he did, because the walls are so thin that even with the doors closed I can hear what’s being said.  I even heard the nurse discuss the approach to take with Medicaid in approving my meds. I sit, and I sit, and I sit.  The longer I sit in that horrible chair, the worse my back is getting, and my pain has moved from a 6 to an 8.  I’ve had no pain med today, and I’m miserable. I’m shifting around in my seat like a hyperactive 5 year old at a birthday party – in a candy store!

Finally, he comes back, tells me the work around we’re using with the meds, so I’ll get them tomorrow.  Tells me they’re still working on the consults, and tells me the u/s showed my thyroid was slightly enlarged, but not enough to cause the trouble swallowing I’m having.  He can’t think what might be causing it, and says the ENT will figure it out.  If I ever see him.

He makes the mistake of asking if there’s anything else he can do for me. Well, yes, there is.  I feel shaky in the afternoons. My hands  and sometimes my legs, have tremors, sometimes (not often) bad enough that it’s hard to knit. This is a problem, since I’m currently trying to earn a living (unsuccessfully, but he doesn’t need to know that) by knitting. To my surprise, he actually pays attention to this one.  He does a bunch of “touch your nose” type neuro tests, and while I pass, he can visually see my hands shaking. He’s not quite sure what to do about this either, and starts thinking about a new med, and I stop him.  I’d rather know WHY.  We decide that until it gets worse or there’s other symptoms, we’ll just “watch” it.  I leave with new meds called in, still waiting for consults, with an appointment guess when?  Two weeks.

I’m really grateful to be able to see a doctor; I know a lot of people aren’t able to, people in worse shape than me. But still, I think, here is medicine at the bottom of the barrel.  Literally across the parking lot is a Complimentary Doctor I’d love to go to; a doctor that blends “alternative” medicine with “regular” medicine, who has an open mind, who could provide treatment and medication and testing that is simply not available to those on Medicaid. I know that his office is private enough not to hear other people in the hall or even across the hall.  Instead, I have a doctor who seems less than sure of himself, who doesn’t seem to understand a lot of what I say,or what I’m going through (although, I must admit, he was much better today!) in a clinic with paper thin walls and a door that must be unlocked to let you into the examining area. I would LOVE to see a chiropractor, and it’s even covered on Medi-Cal (though I’m not sure about the new Gold Coast (ptooey), but that doesn’t matter much when there isn’t a single one that accepts it. PT would help a lot too, but the consult for that has been pending for 2 months, as have all the others listed above.

So anyway, I get my appointment scheduled and get ready to leave.  Suddenly, my phone rings.  Now, when I went home between work and doctor, the Beloved was out cold on the couch.  I got my snack, cleaned up and left with him still snoring. I forgot that today was Murphy’s first real day back at school, and he needed to be picked up at 2:30.  My phone rang at 2:57. It’s the Beloved. No one had picked up Murphy.  He seems a bit annoyed. The Beloved does drive him to school in the morning, and I usually pick him up, but with the crappy day I’ve been having, coupled with it being the first full day and me forgetting to set my alarm, the appointment that I didn’t expect to last an hour and a half, and the fact that the Beloved had passed out as soon as he got back from dropping him off, and slept through my noon visit, I thought he’d probably be awake to pick him up.  Of course, he didn’t know what kind of a day I was having; the last time he saw me I was doing the dance of joy.  A wee bit of a miscommunication deal here. So, I go pick up Murphy and drive home, not looking forward to soccer practice at 4:30. Thank goodness, the Beloved agreed to that duty, and even said he’d get pizza for dinner, so I can rest. Instead, I wrote this train wreck of a journal entry.  Helped to get it out anyway. It’s now almost six o’clock; hopefully the rest of the evening will be peaceful; tomorrow is Murphy’s birthday and I have a TON of stuff to do. Sigh.

You know with the exception of a few major meltdown days a month (you know what I mean girls…) I’m really a very happy person.

Sad News

Last Tuesday, I received a call from Dan, a friend of my brother Keith, who told me that Keith had passed away on August 8th, the day before.  It was a bit of a shock.

As I put the story together later from friends, co-workers, and the coroner, apparently Keith had been not feeling well for a very long time.  He had diabetes and high blood pressure, and didn’t take very good care of himself.  His legs had been really swollen for years.  For a long time, he didn’t have health insurance, but when he got hired at Lexus-Nexus, he did get some; it’s not clear that he’d seen a doctor regularly though.  He had stopped going out since he got back from Manila, not seeing friends very often because he was too tired, too unwell.  He smoked heavily.

His girlfriend Tracy had gone to Cleveland for the weekend, and spoke with Keith about 9 pm Sunday night.  On Monday, she texted him several times, and called with no response.  When she found out after work that he had not been to work that day, she became concerned and went over to his house, got his landlord, and found him on the floor, not breathing.  They called the police and they investigated; they determined that he’d likely had a heart attack.

Tracy got in touch with Dan, got our family numbers from Keith’s cellphone, who called us to let us know.  It must have been a horrible thing to have to do, call some stranger and tell them that their brother had died, when they were grieving themselves.  I’m very grateful that they were thoughtful enough to call.

Then I had to tell our mother.  My mom and dad were on vacation in Europe, on a river cruise.  Luckily, she had left the name of the ship with me, so I was able to track them down through the cruise line.  Unfortunately, I wasn’t able to call internationally, which in my muddled state I forgot, so for several hours I was unable to reach them. Finally, I reached the ship by email, had a message sent, and my mother was able to call me using one of the crew member’s phone.  Somehow, I managed to tell them through my tears.

After a day of emailing and calling and crying, my parents found a way to come home early from their trip, and we decided we’d all meet in Ohio.  I am eternally grateful (again, and again) to my asbestos friend Barbara, who gifted me the airline tickets to get there and back, or I would never have been able to go say goodbye.  Thank you, thank you thank you.  My brother, who had already planned to go camping with his family on vacation, decided to drive out, and camp in Keith’s back yard.  I stayed with Tracy, who was unbelievably kind to me, and went above and beyond the call by picking me up at the airport late at night, and even worse, waking up at 3 am to drive me to the airport on Wednesday for the flight home.  Mom and Dad got back from Europe on Thursday, left Friday morning to drive up to Ohio.  They stayed at Keith’s.  I flew out on Monday.

It was an interesting experience.  The emotional impact of Keith’s death hit me hard.  Really hard.  Sent me into a bad FM flare; on Wednesday I was a zombie.  I could barely move, and every muscle hurt individually.  My husband was amazing, as always; let me cry, waited on me, didn’t expect me to function at all.  It was a really hard day.  Thursday I was a bit better.  However, Peru was feeling bad; he thought maybe he’d been bitten by a spider.  He didn’t call the doctor though, and on Friday, he had a rash on his stomach that worried me.  Being male, he still didn’t call the doctor, and on Saturday when I looked at the rash, I thought “uh oh; that looks like shingles.”  So finally on Sunday, when he was concerned that it was spreading to under his arm and his back, we went to the ER and they confirmed that it was indeed shingles.  Got the medication, which thankfully was not horribly expensive as we feared, and it seems to have stopped the rash spreading.  Thank goodness; because the poor man was going to have to deal with a lot, and me away in Ohio.

My flight out was pretty good, actually.  I was very relieved; the last time I flew I was so uncomfortable and in pain.  I brought a cane, since I didn’t know how much walking I’d have to do, and let me tell you, that cane was a gift from heaven.  Airlines are very solicitous of the handicapped.  I got wheeled and carted and helped everywhere; people were very nice.  The sixty pounds I’ve lost helped a lot too; not enough to not need the seat belt extensions, but enough so that I was reasonably comfortable in the seat.  I packed light, and only brought one carry on bag that fit under the seat, so that made things easier too.

The thing that made going to Ohio so amazing was getting to meet all the people Keith cared about, and who cared about him.  I heard wonderful stories of his humor and his kindnesses, the way he helped everyone around him.  He had a lot of people that considered him a friend; I’m not sure he really understood how much he was liked.  It’s very comforting to hear those stories, get a feeling for what his life was like.  It had been a long time since I’d seen him, decades. We’d kept in touch a bit recently by Facebook, but there were many years he had pulled away from our family for many reasons; some I knew about but there were some I didn’t too.  He was a very private person.  He’d made a lot of poor choices in his life, but the last few years he’d really made a lot of changes.  He got a good job that he liked, he was repairing relationships, getting settled and stable.  It was a hard thing for him to do, and I had been so proud of him.  He’d visited my parents, and my brother, and I was next on the list, but he didn’t make it.

Keith was very into Asian culture, and had always wanted to go to Japan.  He got close; this spring he’d been sent from work to Manila for training.  He had planned to go to Japan after, then return to Manila, but unfortunately, the earthquake interfered shortly before he was to leave.  Travel bans were put into effect that prevented him from going.  So he stayed in Manila for six weeks, I think; and he had a great time.  I”m so glad he got to go on this trip.

The viewing was hard.  I’ve never seen my mother so flustered or emotional, not surprisingly.  My father and brother were just as upset.  We all cried very hard.  The people who came, more than we expected, were all so kind and had lovely stories to tell.  The funeral home had a table with little cards where people could write things, and they said that in all the years they’d done that, they’d never had so many.  Tracy’s daughter Brittany made a lovely poster board collage of pictures of Keith from work and with her family; it was very touching and sweet, and we appreciated it so much.

Margaret and Bruce were amazing; Keith’s house was rather a mess, as he’d just moved in and hadn’t even had time to unpack, and he wasn’t the best of housekeepers anyway.  Kinda like me.  While my parents were out taking care of legal business, they whipped through the house and got it presentable and safe at least.  Margaret, especially, waited on us hand and foot, taking care of meals and anything that needed doing.  Their kids, Teresa and William, were so sweet and adorable; I’m so glad I got to see them again.

It’s always so strange that good things can come out of bad.  It was so good to meet people who cared about Keith so much; it was wonderful to see the family again, and get along so well.  Why is it hard to do this in happy times?  We always wait too long. I hope we learn not to do that anymore. Life is too short.

Traveling so much in such a short time took a lot out of me.  I came home Wednesday, and today is Saturday, and I’m just starting to recover a little.  I’m exhausted and sore and sad, but so glad that I got a chance to say goodbye.  My husband has been a rock, as always, though he’s sick and has been working playing quite a few gigs this week; he still takes good care of me always.

I’m so grateful for what I have and so glad that I’m smart enough to know how good I have it, surrounded by family who love me.  I want to take care of myself, and take care of them, as much as I possibly can, so we can love each other for a very, very long time.

Watch out; another rant.

My clinic just called, to inform me that Dr. A, who I’ve been seeing for around two months, will no longer be seeing patients at this clinic, only the one in Ventura. So tomorrow’s appointment will be with the only other doctor in Ojai that takes Medicaid patients; the one who told me I should see Dr. A because he felt “incompetent to treat (my) complicated illness.” Oh joy.

I’m trying not to see this as a setback.  Failing, somewhat, but trying.  Now that I’m starting to think okay, maybe it really is FM, maybe I can work with Dr. S on Dr. A’s plan.  He was a little more amenable to suggestion than Dr. A, so we’ll see.  It’s very hard though.  I feel like I have little say in my care.  I have to fight the medical community, the financial setbacks, the loss of my mobility and strength, the pain, the guilt of not contributing to the home.  Oh yeah, and the pain and exhaustion.  And the pain.

If it doesn’t work, I guess I can always make appointments with Dr. A in Ventura, though that increases the cost of a free visit  a bit.  I’ll see how tomorrow goes first. Maybe he’ll work the Rheumatologist angle, since he was so eager to turf me before.

The Best Medicine in the World

It’s not Vicodin, it’s not Neurotonin.  It’s not the vitamins and supplements and the changes in diet trying to control this disease.

The best medicine in the world is having a spouse that loves you unconditionally, and takes the trouble to show you and tell you in so many ways every day.  Having someone that can make you laugh when you’re on the verge of crying from exhaustion and pain is a miracle.

Cymbalta may help, and Lyrica may mitigate, but only Dr. Peru makes any major difference in my health.

Thank you, my Beloved.

Disappointment

So, after a day and a half of improvement, today is not going well.  I woke up aching before I  even moved out of bed.  The tinnitus is bad today, and the newest symptom, which I’ve had on and off for a week or two, a burning sensation in the soles of my feet, is so bad I don’t want to put my feet on the floor.

It’s extremely discouraging.  I had really begun to believe that the Neurotonin was helping; I suppose it still may be, but it would have been awfully nice to have more than 36 hours of relief.

The noise in my head is so distracting I can’t knit; added to the distraction of my soles being on fire and my threshold of stimulation is so over the top I can barely keep from screaming.  The TV is alternately too loud and too soft, sometimes both at the same time.

I’m trying to distract myself with more pleasant things but not having a ton of success.  The current political debate is too depressing to even try to contemplate.  Going to go teach Eric how to braid…

Second Guesses

It’s so terribly easy to begin to think that these nebulous, non-specific, not objective kinds of symptoms are all in your head, that really you’re just lazy, or your muscles have atrophied, or some other thing where it’s all in your mind, or somehow your fault that you’re not doing the things you should, or even want to do.

It’s on days like today that I realize how much I second guess myself.

Today, after several good nights’ sleep, I woke up feeling a bit more energetic, a bit less in pain, a bit more hopeful.  Every time I wake up like that, feeling better, I just start in, doing things.  Cooking, cleaning, interacting with the kids, whatever is there.  Without thinking about it.  I just DO it.  It makes me realize again that no, I’m not lazy. I’m not avoiding work.  I’m not exaggerating my pain or fatigue. I do things when I can.

All my adult life (I’ll exclude my teenage years, as my mother would probably refute it, with cause) I’ve never shirked from work.  I’m not always the greatest at figuring what needs to be done, but if someone tells me “this needs doing” I pretty much have always just pitched in and done it.  There are even household chores I actually enjoy; laundry, washing dishes, sweeping, even mopping floors sometimes (though I admit, my house does not always indicate such.)  I have felt so guilty over my inability to do these things lately.  Washing dishes had become really painful, even when the fatigue was better, that I’d taken to leaving even just a cereal bowl in the sink, because the thought of the pain involved in standing there to wash it for 3 minutes was too much.  I hate leaving my mess for others to deal with.

I don’t know if it’s the new medication actually working, or just a cyclical reprieve.  I hope it’s the medication, as that would bode well for the future, but whatever it is, I’ll take it for as long as it lasts.  Another blessing to count.

 

More On Pain

So, I’ve accepted that pain is going to be a part of my daily life.  The question remains: how to cope?

I can’t take ibuprofen anymore; it causes tinnitus. I have a consult pending with an ENT to see if there’s an organic cause, but I know for sure that taking ibuprofen makes it worse, so it is now reserved for severe headache, balancing the benefit against the consequences.

I had been taking Vicodin, about one a day.  I gradually, without even thinking about it much tapered myself off; it just doesn’t seem to help a whole lot.   I now take one a week or so, usually on the days where I have to work, and the pain is severe.

I saw my doctor Tuesday, after work.  I was in pretty bad pain when I saw her, about an 8.  Verge of tears kind of pain.  I hadn’t taken a Vicodin for work that day, because I wanted her to see me in pain.  I explained why I stopped taking the Effexor, and said I was open to trying a different SSRI, so she prescribed Zoloft.  Told her about not being able to take ibuprofen for pain, and she said we could try gabapentin (Neurotonin.)  Gave me prescriptions for both, told me to start them about a week apart.

After doing some internet research, I decided to start the gabapentin first.  It’s an anti-seizure medication that often helps with neuropathic pain.  I read many reviews of people with FM who have used it successfully to reduce their pain.  So I took my first dose last night.

The main side effects are drowsiness and dizziness.  I have never really had a lot of side effects from medication, so I was hoping I wouldn’t with this.  It’s only been twelve hours from taking it, so my experience is limited, but it did make me pass out on the couch, which after several nights of insomnia was a good thing.  Less of a good thing was being unable to move to the bed without help.  Even this morning, I’m dizzy, in a weird way.  I’ve been having bouts of dizziness, vertigo, which I absolutely hate, worse than pain.  With pain, I can still function, though it hurts.  With the vertigo, I’m down for the count; can’t do anything.  Can’t drive, can barely walk to the bathroom.  It’s totally debilitating.  Luckily, it’s only happened a few times.  With the gabapentin, this dizziness is a little different; it’s almost like being drunk without the euphoria.  I’m not nauseous, which helps; with the vertigo I am.  If I move slowly, it’s reasonably manageable, though I don’t think I’ll be driving.  I’m trying to find out from other users if this is a temporary thing.  And a dose related thing.  Right now, I’m on a very low dose; therapeutic  dose could be three, four, or even five times the dose I’m on.  I haven’t really noticed any effect on my pain, but I wouldn’t have expected it to happen this quickly anyway.  So I’ll try it for a week, see how it goes, then try the Zoloft.

A friend pointed me this morning to a link that discussed pain in a really intelligent, thoughtful way.  Chronic pain is so hard to quantify.  I’ve had some severe pain in my life; childbirth, though that wasn’t nearly as bad as I expected (I’d rate it about an 8), and the headaches when I had meningitis  and the pain from gall bladder attacks were both bad enough to induce vomiting from the pain alone. So that’s what I rate as a 10 on the numerical scale.  The most severe pain I can ever remember.  Contrasted with that pain, my day to day pain rates about a 5.  The problem with that is that five isn’t horrid.  Until you realize it’s never going to end.

That post linked to this one.  One of the comments on this post made a wonderful analogy; I’d like to give attribute but the poster was simply named as anonymous.  Here’s what this pain sufferer said:

I wonder if one of the biggest challenges with classifying pain is the fact that there are 2 types, transitory & chronic. Transitory pain can be excruciatingly awful, such as a broken bone, or a migraine, or childbirth… but it goes away. A few days of medication, and there is a resolution. It is clear that it can be “fixed” by drugs, breathing techniques, meditation or distraction techniques.

Chronic pain is a trickier beast. If you have a rock in your shoe, it is not a pain worth mentioning. It is a 1 maybe a 2. The assumption is that the rock can be shaken loose, that the foot will soon be comfortable again, since it is a small pain. It isn’t much, really, just a little thing. An aggravation in your shoe.

But it isn’t a little thing at all.

At first, it is an annoyance, really. An aggravation, if you tend towards anger. But after a while, the pain dominates your thinking. All you can think about is how long until I can take the pebble out of my shoe.

You start trying to walk differently, trying to avoid the thing that causes pain, but then other parts of you start to ache because you aren’t using your body the way it is supposed to be used. So you go back to walking normally, pretending the pain doesn’t exist. You walk slower. When that doesn’t work, you walk faster.

You buy better shoes. You buy a cane. You take Tylenol, and Advil, but the pebble is still there.

You try hopping. You try crawling. Still a pebble.

Mind over matter, you tell yourself. Meditation. Breathing. Hypnosis. And a pebble, still in your shoe.

“You don’t have acute pain, you don’t need strong drugs,” the doctor tells you, and you can see him thinking don’t you know there are people who are in serious pain out there? Stop whining.

“What’s the matter with you?” your boss asks, “Your mistakes are costing me money!” and you want to scream can’t you see the pebble? I can barely think past the constant background noise of the pebble! How am I supposed to work as well as I used to?

But of course no one else can see the pebble. Most don’t even believe it is there, not all the time. It couldn’t possibly be. Pain is a transient thing, after all. No one could REALLY be in pain ALL the time.

Those who do believe don’t understand why you don’t just take a Tylenol and make it go away, like they do with a headache. Pain is conquerable, after all. We have the technology, they say.

Because the alternative is too scary to contemplate: What if the pain never goes away? What if I’ll always have a pebble?

Chronic pain doesn’t have to be a strong pain to have a strong effect on your quality of life. Even a chronic pain of 2 or 3 should be taken as seriously as a chronic pain of 7 or 8, because your life changes in so many ways.

And it doesn’t just affect the person with the pain. My kids are 6 & 8 and my daughter has never known me when I wasn’t in pain, and my son was too young to remember it.

My pain affects their life every day, and I hate that. I find it so hard to live with that knowledge.

It doesn’t have to be a 10 on the pain scale to be a 10 on the “negatively affects quality of life” scale. If a doctor can give me back my quality of life by medicating my pain, even if my pain isn’t a 5 or higher, then why on earth would they choose to not medicate it? Why would one force my kids to make sacrifices in the richness of their life experiences just because one thinks my pain isn’t strong enough to warrant treating with anything more than over the counter meds? If OTC meds were working for me, I wouldn’t be in the doctor’s office saying I’m in pain and please help me do something about it. I’d be out there doing fun stuff with my kids and enjoying my life to the fullest. Yet, being young, and female, and diagnosed with fibromyalgia among other things, I find it next to impossible to get adequate pain control, and our lives are the poorer for it.

This is the root of chronic pain.  It changes our lives, every day, every minute, all the time.  It makes my son think twice before he asks me to get up to come see something he wants to show me.  It makes him ask how just going to watch him play baseball can wear me out so much. It makes my family schedule shopping trips around my pain schedule.  It makes my husband avoid intimacy because he’s concerned about my pain.  It makes me rethink and reroute everything I do. It adds stress to my thoughts and to my relationships, not to mention my finances.  It causes grief, anger, and transient depression.  It’s always there. The affect it has on my family is worse than the pain, so often I do things I probably shouldn’t because I want to be there for my family, and then of course, there’s the payment due, in the form of days or even weeks of a flare caused by doing too much.

It’s more than four years since I first noticed the symptoms; the fatigue and the brain fog was the worst at first, and I didn’t understand it.  Then the last two years it’s been the pain. And it’s still getting worse.  More symptoms, more diagnoses, more drugs and tests and consults with doctors who simply see me as an overweight middle aged pre-menopausal depressed* female with multiple complaints.  They turf me to the next guy in line and never think about how my disease affects my life.

One more link: a really helpful, thoughtful pain scale: The Mankowski Pain Scale.  It really is the most practical scale I’ve seen.  On her scale, I’m chronically at five or six, with flares to eight.

Current plan: Continue trial of gabapentin for at least a week.  Waiting for approval for the following consults: ENT, GI (colonoscopy), Physical Therapy, possibly Rheumatology.  See doc in two weeks.  Remind her of elevated cortisol and see if aldosterone remains elevated.

*Re: depressed: I always need to make it clear that they see me as depressed, but I am not.  I have moments of depression, as anyone with a chronic issue would, but other than my pain, I love my life, my family, my fiber obsession, music, all the things I do.  I see myself as a very lucky, blessed woman with so many good things in my life, and I appreciate all of then every minute of every day.    There is nothing wrong with a diagnosis of depression when it’s justified, but too often it’s the box they put us in when they can’t figure out (or deal with) what is wrong with us.

Adjusting

So, it’s been a couple of weeks since I posted.  Not a good sign.

For the first time, the pain has been significantly bad enough that I’ve been spending more time in bed.  Standing up, or even sitting for too long made my back feel like it was on fire.  That’s been hard to take. It means I’ve  been stuck in my room (the hottest room in the house), isolated from my family much of the time.  Isolation is not a good thing.

I’ve had to start thinking about my life differently.  I have to stop putting things on hold “until I feel better.”  I may not ever feel better, at least not overall.  I may, of course, and I can continue to hope and work on ways of feeling better; but I can’t make that my focus.  This is my life now.  I have good days and bad days.  I will have days when it gets to me and I’ll be blue, and I’ll have more days (I hope!) where I’ll focus on the good things in my life that are there every day.  I may have days when I can’t get out of bed, and I will have days when I’m almost “normal.” I need to focus on the present.  I’m learning to pace myself a bit better.  Learning to ask for help sometimes.  Still need to work on that.  I do wish I had a larger pool of people to ask; the Beloved needs a break once in a while from my neediness.

I no longer worry that this is all in my head.  Even I couldn’t invent this hell for myself.  I don’t know if it’s Fibromyalgia, or CFS, or thyroid, or some other damn thing.   I just know it’s real.  I celebrate the days I’m doing better, and just try to muddle through the bad days as best I can.

So far, I haven’t found anything that helps in any way.  I’ve tried so many dietary changes, and other than the initial “vegan” change, nothing has made a noticeable difference.  Worrying about it, and the cost of the diets, and the extra work involved have not paid off, so I’m giving it all up.  I’m going back to being “ovo-pescatarian” as that was the only thing that made an improvement in my life and agrees with my ethics.  Gluten free was simply too hard, too expensive to maintain, as was soy free.

I’m very much hoping my doctor will arrange for some physical therapy; I feel that would be the most helpful thing (other than maybe an in-house masseuse.)  She initially suggested it, so it’s a matter of whether Medicaid will pay for it or not.

Right now, my focus  is on feeling better about myself.  Making these thoughts concrete helps.  I’m doing some girly things to help me feel better about my appearance too; pics later if it turns out.  Setting a schedule, trying for some kind of flexible routine, learning what the limit is each day will help me manage my “adjusted” life.  Thinking more about how to manage my own fiber business for some sort of income.  Though even knitting is beyond me some days…

It’s strange, but in a way, surrendering to the “IS” actually makes me feel more in control; the constant struggle, denial, and fear took that control away.  Now that I’m dealing with how things really are, I’m back in the driver’s seat. How’s that for Zen?

Amazing what happens when I feel better.

So, I finally think I’m recovering from canning weeks ago.  Slept pretty well last night, woke up this morning and didn’t even think, just started doing things.  As of 2:30 pm, I have washed, dried and folded four loads of laundry, washed, dried and put away two sinks full of dishes, updated the Tour de Fleece group on Ravelry, and even worked on my room a bit.  This is quite a change from the last several weeks, during which time I was too sick, fatigued, and in pain to wash a dish, cook anything grander than scrambled eggs, or focus enough to read email.  I even had the energy to nag the kids about their chores. Oh, and I’m dehydrating onions too!  (Jola Gayle, you could have warned me about the fumes!)

The only problem with all this energy is that I want to use it while I have it, so I overdo and set myself up for another crash.  I feel so badly about all the times I can’t do things I want to make up for it.  Balance, again.  So hard to find.  Especially when there’s so much that needs doing.  It’s still very hot too; and I haven’t been responding well to heat; it magnifies every symptom I have.  I’m thinking about maybe investing in an air conditioner for my bedroom; while we can’t really afford it this room is the hottest one in the house.  I have two fans going and with the problems I’m having with my ear, I can’t hear a damn thing in my room.   I have to turn the volume up so high to hear the TV it’s ridiculous.

Anyway, after all this activity, I still feel ok; so after this respite, I’m going to head back into the fray (meaning work on the officially declared disaster area known as my room.)  More later, if I’m still up for it; and hopefully pictures of my first bobbin plied!