talking to myself.

5:42 am.  thinking about the new rheumy. first time i saw her i told her about some of the stuff that had happened over the last year plus with health/side effects and the need to find a new doc.  the second time, this Monday she now had my medical records.  she listens, it's more about what she doesn't say. 

the plan is to start taking gabapentin in a lower dose, then increase it each week until i reach three hundred miligrams a day.  this will gradually establish the presence of this med in my system without giving it too much from the get go.  the idea is to lower the pain from the fibromyalgia to help with sleep and with daily function.

nothing bad at all, but she doesn't speak about the CFS. she doesn't address the fibro save the idea to add gabapentin or how to make life with severe arthritis better, or how to help myself with pacing ......... i feel as if she almost doesn't know she's a rheumatologist and i'm a patient.  feels almost as if i've stumbled into the wrong place yet again and i'm more alone with illness than i think i should be. 

i want a doctor who says stuff like "i want to help you function better.......find ways to help you cope and live with illness.  i want a doctor who addresses the challenges of having these various illnesses in a direct way.  i feel like a nebulous sick cloud floating through her office.......feels like she doesn't know what i'm doing there and it makes me wonder .......am i in the wrong place?

i did some more research for doctors in my area.  there is a place that treats chronic illnesses in my area.  whether it's any better or does anything more is hard to know from a website.  i want a place that helps manage chronic illness including a compassionate understanding of what it's like to live with this all these years........someone in a position as a doctor who can recommend, suggest and think outside the box to improve living with all this medical mess. 

it's almost as if ......maybe it's exactly as if i am still not seen by this doctor as having real illnesses in need of real advice, guidance and help.  the same way a doc would help a patient with say diabetes.  with that illness they send you to classes to learn how to eat, use meds correctly.......they give you concrete ways to best treat your disease.  it feels like i'm getting treatment light instead of treatment right.  maybe what she's doing is all she knows how to do for someone like me?  maybe she doesn't really go in depth with illnesses like mine........i'm not upset per se, but feel like a big red balloon blowing here and there wishing there was a place to go to moor.  a place to feel safe and cared for with this list of long term illnesses.  maybe she doesn't know of anything new or innovative, maybe she's only interested in R.A. or. other more distinctively discernable diseases? i don't know........i really don't know.

when she entered the room for our appointment she was holding a sheaf of papers in her hand.  she said "all these records......then her voice just drifted off and stopped. the last time i met with her she said she needed my medical records.  that is why i contacted my primary care doc, the former rheumy, the second opinion rheumy and got the newest test results from the orthopedist office.  i got the records cause that has a direct impact on my life every single day ......year after year after year.  when the primary conversation is not very substantive, not very filling......not very much about what and how and who and what......i don't think she would know why.......but some of the other things i think should be brought up and talked about at the table of each appointment.  a how is your day, how are you coping, what are your pain levels........something.  some serious something to help me, others like me.

i was reading an article about why people with illnesses like me give up on so much because of interactions with doctors like this.  the article says we don't feel heard, we don't feel treated, guided and such. 

she did say my situation is tricky, cause i have all this joint pain......the pain travels down into the muscles and that's when the fibro pain takes over.......and dumps even more pain into my body.  that it makes it all so much tougher.......she's never physically touched me in any way to examine me.  she's not tested me to see what my overall strength is, she's not tested my fibro trigger points, she's not directly addressed the CFS at all.......if she says she treats these illnesses then when does she actually do that? 

it's all a little too little to feel fed at her medical table.......maybe that's the best she has to offer?  maybe this is not what interests her?  both times when i've been there there aren't very many people there.  there seems to be something going on.......the few people come in to the waiting room, they go back....come out a few minutes later and off they go.  it's pretty quick........do they get some kind of shots/injections for ? it's pretty quick, they don't have a lab there .....so it's not like patients come in and out for lab work. 

she is very nice, she is present.......but i feel that she isn't quite there about me/about the illnesses i have.......something is not all in.  not everybody has to make pretty speeches, i don't know, maybe this is all there is to help for me.  maybe this is all i get.......i get more info at the dentist about care for gum disease, for care of my teeth overall than i feel that i'm getting from this new young nice doctor lady. 

it's another doc who doesn't know, doesn't really have a plan to help me live with all this crap.  all this medical mess. 

my sleep doc called me today at home.  this was a good thing.......i got up enough gumption to send him a message in the patient portal about the last visit.......and we had a good talk.  he finally understood what i was saying/what i was needing and it went well.  connecting with people is hard enough, connecting with a doctor person can be really hard.  sometimes i feel as if they see me as more the doctor than they are.......as if hey, you have all this stuff going on what do you think about it all.......?  what do i recommend that i do to make a life with all these shitty physical pains and problems going on.  would a doc treat diabetes or m.s. or parkinsons or cancer or kidney disease like this?  or would they step up and do and say more?  i pray that they would, that they do.

tonight is dinner at stella's. sam is coming to talk to stella about how to pay off her mortgage early.  she wants a plan to pay it off so she can hopefully retire before she's 100.  at 53 she want's to know that someday she'll own her home, be able to work less......and take care of herself........not have to work as hard as she still does.......so that's the plan. dinner at stella's at 7:30.

i've been overdoing it here.....painting stuff.  got blue and green spray paint all over my feet.  uh oh.  not the best look.  used nail polish remover to get some of it off.......it looks as though the tops of my feet are healing from some bad bruises.......no, it's just me holding another paint party on the patio.  i spray painted two metal white chairs a bright deep blue.....marina blue.  then i painted some old planters green.......they now look brand new!  it sounds so simple when i write the sentence above......but it takes a lot more than that to do it.  i dragged a yellow chair from inside the garage to sit on. it's a straight chair that is easier for me to rise up from.....i had to lay down a plastic paint tarp on the grass.  i had to wash/scrub the chairs and the planters and then let them dry in the sun.  i had to drag out some dirt and containers to put dirt in as i shifted the plants from the old ugly planters into the new freshly painted planters.  it was a lot to do........i didn't do it all at once.  i started on saturday and did a little bit each day since.......

i also took an old piece from the thrift store......a really messed up frame holding a monet garden print......i removed the old print, cleaned up another nice frame from the same thrift store......put the monet print into it and hung it in the master bathroom.  after forever hemming and hawing about what i wanted in there i feel like i've finally connected the design dots.  i got a white shower curtain that has a dragonfly pattern on it.  the fabric looks like linen, the design looks like it's hand painted on softly with watercolors.  the picture over the commode is a lake with soft wispy clouds, pretty yellow flowers at edge of the lake......there is an antique book shelf that i found six baskets that fit just right.  in the baskets i keep all sorts of products, make up, hair products, lotions, body butter......all that infernal lady stuff is there but it's nicely organized.  there is a vanity in the bathroom but it's not enough storage space......it's also harder for me to access things stored in the vanity. it's a deep cupboard space that means a lot of bending to get to the stuff.  i use it more to keep stuff i use less than the stuff i use daily.  i already had a pretty white bathmat in there, but i added the next size matching white rug for in front of the bathroom sink.  it's not a lot of changes it just feels more cohesive.  i put some deep blue hand soap in the soap dispenser, that reminds me of the water.......i keep odd bits on an old clear glass plate that has deep emerald green glass swirling through ......its a collectible working in todays space......i love old and new working together throughout my living space.  makes me feel at home, comfy......peaceful, content.  it's nice. 

i really like the white bedspread i added to the bedroom.  it cascades to the floor and does that slight puddly fabricky thing along the edges of the soft carpet.  there are six large pillows on the bed now.  before there were the more standard four.  two have vintage fabric blue and white pillow cases, the other four are white pillow shams.  there is a pale blue bedspread that is folded over the end of the bed.......then i added a long pillow that was just waiting for a chance to shine somewhere here....it was stored upstairs in one of hte kids old bedrooms.  it has a white background, it's a longer than usual rectangular shape, the colors are soft, muted......deep blue, soft pinks, greens.......a little of this and a little of that. gives the bed a focal point.  i keep all the night fibro helper pillows in a big wicker basket by the bed.  squishy pillows i recovered by hand stitching fabrics to make them look fresh and new.  i put them under my neck, under my arms, legs........arrange them to offset the pain when i sleep.  got to help the princess feel comfy in bed.......yes, that is a scenario when i play the princess.  i rarely think of myself that way.  usually i think of myself trying to fight the good fight to take care of me on my own ......for the most part that is not only how it is, but feels a little too lone wolf too often.

i talk to helen a couple of times a week now.  i'm going to a new bible study for multigenerational women this thursday if i can.  i'm making plans with new neighbor ginny to go out to dinner.  now i think i should have suggested lunch instead........either way, it's good to be making plans again.  so good!  i'm working at consistency.  calling mardy regularly.......as in once a week to touch base.  i actually called her on sunday to see if she wanted to go run errands with me and never heard back.  so i tried her again yesterday.  she answers the phone by saying who is this?  i say it's me ruthie......she says she was just getting into the shower.  ok, i let her go.........she said she'd call me right back.  not a huge deal either way, but it was a good two hours later when she called back, this time she said she couldn't talk to me until tomorrow cause of the big storm. she said she can't be on the phone during a bad storm.  we live about 8 minutes from each other.......we had no rain here at all.  not saying she didn't have a storm at all......but there was nothing to indicate a bad storm outside or on the weather forecast.  but it's ok, we can always talk another day.  i just don't know her all that well still and don't know if she's ok.......if she has anxiety?  i know a lot of people don't shower for example during a big storm......but are phones dangerous to talk on when it's raining?  is this a thing?  so confused.

either way.......my old at&t land line phones as of yesterday no longer take messages. the equipment says that the machine is set to take a message after four rings like before but it doesn't kick in.  now it just rings and rings and rings..........does this mean i have to get new phones?  sigh......still haven't fixed the broken doorbell.  it's getting lighter now........6:44. 

i don't mean to sound like i'm picking on Mardy......we all have our worries, i want her to feel safe........and at ease when she's on the phone, i don't quite understand. it was as if her reaction was more for say a tornado watch than a summer rain storm.  but maybe she gets scared during summer storms?  maybe so........the pain in my shoulders and arms is horrific right now.  i keep trying to pretend that it's not so......push on.  be a person who does and keeps on going like the energizer battery bunny.......but i wish i could take my shoulders and upper arms and tuck them in to a trunk until the pain goes far far away.

rio is circling my legs right now.....mia is getting in some good ol claw sharpening time on one of the cat scratcher cardboard thingies.......the back patio looks good overall.  lots of healthy plants in clean tidy planters.  yay........one of my side tables needs to be taken down to the trash.  it's a heavy blue and white tiled table with heavy iron legs.  i painted the legs a clean fresh white.....then one of the bottoms of one of the legs almost feel off.  by keeping a planter on the back of the table it stands ok, take the plant off and it looks like it's about to collapse.  i got it for a few bucks at a thrift store a few years ago.........sad to see it about to conk over. wish there was a way to save the table top.  it's such a friendly happy little table........my garden bench collapsed.  i should have treated the wood so it could withstand the elements.  it was a really old bench that i got at an antique shop in winder.  i still remember racing the store owner outside the shop.....her hubby was cheering her on as we raced with our canes to see who could get to that bench first.  it was a funny site.......loved it when she grinned and said "RACE YA!" and off we went in our slow wonky determined pace down that walkway.  i'm so going to miss sitting on that bench in the corner of my garden.  maybe if i bought newer things i wouldn't have to say so many good byes......but i feel so right living with older much loved well used things.  always dragging home spare chairs from some yard sale or other.  have one in the garage right now begging for paint. it's a really solid sturdy old library table chair.  i want to paint it either gold or silver....glam it up.  use it in my bedroom to put on shoes and pants and such.  a hard surface to help me dress.......the bed is ok but not as good as a straight chair.  like having these little diy projects to look forward to.

i found a pair of wire framed glasses for a teddy bear.  the lady told me they are the ones kids get at build a bear at area malls.  they are round red frames with gold side pieces.  i put them on a rescue teddy bear. i made clothes for the bear out of some antique doilies....put some pink lace around her tired old head.  she sits on the stair way and i always smile when i see her.  i think that bear and i have a lot in common, we're both weary but not unhappy in general.......just trying to do our best.

time for me to go back to bed.  last night i ate a peanut butter & jelly sandwich for dinner and it gave me a tummy ache.  not sure why......time to rest my eyes, my arms, my shoulders.  my left foot has had edema going on for over a week now. can't wait for it to finally release and feel comfortable in that foot again.  don't know what caused it to swell.......the only thing i was doing different last week was to go off xarelto, magnesium and vitamin d for five days. so that's what i'm attribiuting it to........it's not as bad in the mornings, but the skin still feels stretched and angry.  maybe if i drink a lot more. water this morning it will release the edema......

time to actually stop typing now.  trying to think of something to take to stella's for dessert.  hmmmmmm. later world, later later alligator.