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28 July 2014

Envy



i know i need to get over this, but i don't really know how.  People post things like this at Facebook all the time.  


I look at your kids and wonder, "Where the heck is mine?"  

Family was up over 4th of July (not at our house, Duane's uncle's place).  I went over to hang out.  Hilary is a year older than our Kaylee would be, and Lincoln is 2 months older (his parents were married the week after we were).  It is getting harder to be with them as time goes by.  I wonder what she would be like.  I don't fit in with any of the mamas.  

The above pic to me is simply bragging.  I don't have as much a hard time with pics of the kids and news of their accomplishments as i do with these canned things.  ("If your daughter/son/husband/sister/brother/cousin/mother/father etc. is the best thing in your life, repost this.")  I've told Duane he won't see me reposting these things for i know too many people who want to be just where i am - in a healthy relationship with someone who loves them.  I won't brag about that.

I will sometimes be thankful for him.  I think it is different.  I could be wrong.  But again, it isn't pics of the kids and stories about their lives that makes me feel a little nuts.  It is these bragging reposts that someone else created that sometimes make it hard for me to not scream.

Friday is the EEG (sleep deprived).  I've not gotten a letter from DMV taking my license yet.  I'm very careful and limited when i drive.  I won't drive if i feel unwell, or haven't had enough water or outside a 10 mile radius.  It is kind of limiting, but i'd much rather be safe than sorry. 

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10 July 2014

Life has been very frustrating for a while now.  I'm seeing my functioning - my ability to work, to do gardening, cooking, housework, socialization, driving, most anything, go down and down and down.  What i find to be really surprising is i can FEEL that i AM healthy, that i have energy, that life doesn't have to be this way.  I can actually feel the potential energy stored in my muscles and wanting to be used.  But somehow i can't access it.  If i try to push myself to force that energy, it won't be tapped, i'll just be worn out and take days to recover. It feels like i've something unplugged/disconnected somewhere, and if i could only find that and plug in, i'd be as active, healthy, and able as anyone my age, maybe more so.  I've been trying to push the docs to help me find that disconnection and figure out how to make me functional again.

I've had two seizures - last October and in April.  I was able to keep them fairly under control with keeping hydrated when i realized that dehydration was the key.  I mostly self-treated and was very careful what i told medical professionals.  Then, the end of June i had a couple more seizures.  After the first one i was not able to hold down food/water and realizing that put me at risk, i went to ER for hydration.  Got put inpatient and dealt with a doc of whom, frankly i cannot have a lower opinion.  Waste of money and time.

Both the other docs i've used strongly felt i needed a neurology consult, but were not able to implement it.  Totally useless in helping me to get the consult i needed.  (And i'm irritated more than i can say that an EEG was not done while i was inpatient.) 

So i called and called and called.  Happened across one that had a cancellation this morning  (The next opening was the end of August.)  

So Duane drove me down.  We were both favorably impressed with him.  He was surprised that i don't want meds, but he didn't seem to be offended by it.  Said he's not run across it before.  He indicated he DOES think it is possible i have Diabetes Insipidus.  (The hospital doc stated i "can't possibly" have DI because my sodium levels are normal, which makes no sense to me.  I can't even find reference to sodium levels in the literature.)  This doc seemed quite surprised by that statement, too.  But when he mentioned meds for DI, i mentioned the contraindications - 1. seizures, 2. migraines, 3. kidney problems, and he quite understood why i wasn't interested.  

So the next step is to get an EEG.  I've an appt for 1 August.  Yep.  Not a concern on their part, obviously.  We won't have any ideas until that is done, except i need to work very hard at staying hydrated.  It is getting harder as it is taking more water every day to keep me okay.  

And i'm going to lose my driver's license.  This doc said DMV is not real swift on that.  I will almost certainly lose it for a minimum of three months, but they may not notify me for a while.  I've already limited my driving quite a lot.  This is going to make life very difficult for a while, but it is what it is.  Frankly, tho of course i'm irritated about it i would be much more angry with DMV NOT limiting someone having seizures.  I'm trying to prepare my self mentally for how difficult i will find it to be.  

So, for now no answers, and no idea which direction to head for answers.  I'm more than a bit impatient with both Connealy and Ruelas for giving me no additional support.  I quite understand that to some degree they would be working blindly, but i still believe there are support measures (IV Vitamin C and glutathione and other things) that could help slow my loss of functioning, possibly help me maintain better, even if we don't know the exact reason for the losses. 

When all is said and done and i, hopefully, do have answers i may re-evaluate where i want my $$ to go - whether i've made the best choice in docs who can be helpful.



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22 June 2014

I am hopelessly inept at social functioning

This is one of those days where i'd just like to bury myself in the covers and be unconscious for a long, long time. 

People think i'm fishing for complements when i try to explain.  My mother's legacy is that she told me over and over and over that people wouldn't like me.  Oh, she didn't say it quite like that.  She said, "People won't like you if _________"  Fill in with "you bug them," "you're a pest," "you're a bother," etc.  However, i mostly just heard people won't like you if they know you.  That somehow, if i spent time with someone and they REALLY knew ME, there was not a chance they would ever like me.

So i never really learned to read social cues.  I simply made myself as invisible as possible.  The times i pushed out of that, it felt like i had my hand slapped, over and over, reinforcing what i'd been told.  Whatever effort i made it seemed to have bad results.

Thus, in time, if someone was nice to me or would hang with me, my response has been, "This is a really nice person.  They are going to tolerate me."  And i  rarely believe - no matter what is said - that they do anything but suffer me, to grin and bear my presence.  (And when i try to explain this, people don't seem to understand i'm telling them "this is how i see the world."  I think they think i want reassurance.  Reassurance is nice, but i tend to discount it.  "They are saying that because they are a really nice person and would say it to anyone.") 

I've made a few friends over the years.  I can name off 4 long-term folks that i still am in contact with, we write or talk on the phone, or occasionally see each other a couple of times a year.  They continue to be kind and endure me. This is probably really unfair to my friends.  We don't live close and it is a challenge to remain in contact with me.  They DO reach out to me.  (This belief of mine, on people not being able to like me, is one of the many reasons i find Duane to be a constant miracle.) 

I have, over the years, tried really hard to read people better and to connect.  I've tried to change my mind-set that people put up with me.  I've read, How to Win Friends and Influence People, more than once.  I'm pretty inept with it.   I find it is hard, really, really hard. 

I've tried, i truly have.  I post a lot of controversial stuff on Facebook, mostly on GMO/processed food info or on natural health.  I quite honestly imagine most of the people i know on FB have the setting in place so they don't see what i post.  I doubt many abide my posts, unless they also have a similar mind-set.  In the past i've tried to meet people through Bible Studies and book clubs and writers groups and women's retreats.  I just don't seem to connect to people well.  

And then, almost three years ago i began going to a knit/crochet night in Orange County.

It is unlike anything i've experienced before - not in church, not in school, not at work.  These folks (if you fit into the group, and somehow i do) are accepting, supportive, funny, alive, aware, sensitive, friendly, understanding, empathetic.  They are also very down to earth, real, honest, homey, sometimes bawdy.  There is little in our conversations out-of-bounds.  Some folks could be really offended, but somehow it adds to the authenticity of this group.  I can't use enough positive adjectives to explain it.  We laugh together a lot. 

And somehow they tolerate me. I can be there every week and they let me come.  

We've had them come to Big Bear for a weekend three times now.  The first one was really lovely, except that someone joined us who really did not fit in.  She was less socially adept than even i.  Things went pretty well until part of the group wanted to do something that did not fit her plans, and then things became rather odd and weird.  Even so, the group tried to reach on and patch things over, and it simply could not be done.  So that first weekend tends to be overshadowed by that experience.  

Unfortunately, i see a lot of her in myself.  

I made a real blunder this weekend.  We were talking on a topic and i made a statement (actually, i think i made several on different topics) which were seen as political comments.  I didn't think so then, and i'd rather not think so now, but i must be wrong.  I wasn't trying to change anyone's mind on issues, i simply wanted to speak, and i missed all the social cues telling me to shut up, this isn't a discussion the group is open to.  

One person ended by saying, "Kathryn likes to debate."  I think i'd almost rather she'd slapped me.  That is saying (in my hearing) that i'm being contentious.  AND that the tolerance of the group is close to giving way.  I've been trying all day to deal with the perception of myself as a contentious person.  Not something i want to add to my identity.

I know most people struggle to connect, to make friends, to relate, to feel they are understood and accepted.   I just feel that most, however they fight with this, do not have that deep, deep belief that they cannot connect or be liked by anyone. 

They've reached out, too, tried to smooth it over.  We still are talking about "the next one,"  But for right now, i feel i have no voice, there is nothing safe i can say, too many of the things i think and discuss are unacceptable. 

This group is obviously very, very important to me.  I'm sure in time i'll bounce back.  I was quite aware today how easily i could have burned bridges and had the weekend result in a fiasco like that first one.  A new reminder of how clueless i can be. 





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11 May 2014

Don't like to think about this day

Today is Mother’s Day.  Apropos of nothing.  It still hurts.  There is still nothing i can do about it.  A friend posted this at FB for me, tho.  I thought it very sweet.


My SIL got a very fancy book of her wedding pics.  I was really hoping there would be one of Duane and me.  We walked down the isle together and i was hoping that we'd have a good pic of us together together.  

(So here is my favorite from the photo shoot at church for the Church Directory.  No, this isn't the directory pic.)

Actually, there are almost no pics of me at all from that wedding.  Which, frankly, is a good thing.  I'm in a few pics, and in every one i look very grim.  I hated that wedding, i hated being part of it, i was uncomfortable nearly every minute of the whole time.  I was just trying to endure it, and my face showed it in the few pics i'm part of.  I thought that as time passed the feeling would pass, too, but it has not. 

Agatha Christie wrote a book in the 70s called "The Mirror Cracked."  The title is from a poem called "The Lady of Shalott."  But the premise behind the book is a lady, very kind, well-meaning lady, who never reads other people.  She would do what she considered the right thing to do, never considering the wants/needs/ desires of the other person.  In the book this gets her killed.

I find my SIL very much like that.  She is never unkind.  She is gentle.  But she never considers what other people might want or think.  The whole wedding was that way.  She was NEVER unkind, purposefully.  She was not a "Bridezilla" in any way.  But the comfort of anyone else was never considered (i could go on about this for a long time).  

This week she and BIL and nephew were at my IL's house.  She started laundry at 6.15 in the AM - in the room right next to us.  It is loud. I know perfectly well that if i would mention it to her, her response would be entirely puzzled, and a bit apologetic.  "Oh, did that wake you?  I'm sorry."  But saying anything to her will never make a difference.  She might think to wait a day, or do it in the evening another time, but she might not.  And making her aware of it now will never change her behavior for something similar in the future.  She simply never considers another person when she makes decisions.  

I want to care for her - for Duane's brother, for his brother's step-son, but i find it really hard.  They are making a lot of choices that are going to cost them a LOT in the future (like watching a train-wreck about to happen and being able to do nothing to stop it).  I find that there is nothing i can do to help or make a difference.  It hurts me now, it will hurt in the future, and i can't stop it.  They don't want to hear about it.  Caring is costing far too much.  
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I saw a new doc a week ago.  I found it difficult.  I was nervous and not communicating well.  He recommended some tests and treatment that i can't possibly do; we simply don't have the money to do them.  I was feeling despair as i felt he wasn't going to recommend anything at all.  I've been steadily getting worse in the past few months and i'm almost desperate to do something to help me improve.  

He then said he could recommend something similar to the expensive one, but that it would not work as quickly, and that it wasn't as "aggressive."  My response was that, frankly, given my current functioning, i don't think my body could handle aggressive treatment anyway.  So i bought the supplements.

It didn't feel like they were making a difference.  The last time i had a good reaction, it was like a rocket-ship taking off, and the crash was like that, too.  I think they are making a difference, but so slowly i wasn't really aware of it.  Wed. night a mama in my knit group brought her baby.  She's a sweet thing and i had so much fun with her.  She only weighs 13 pounds, but i was able to play with her much longer than i was able to handle Duane's cousins' baby (weighing about the same) last fall.  I was very, very tired the next day, but i recovered.  Then i had one of my girls here Friday and i was able to work much of the afternoon with her.  And on Sat. we had folks over for dinner and i did quite a lot then, too.  Now i've rested most of today, but this is an improvement.  A month ago just one of those things would have worn me out in about 1/2 hour and i would have had to spend a lot of time recovering.

So, i'm hopeful!  :)


541

03 May 2014

Spring is here?


We had snow last weekend, and i was quite worried for our trees, especially the apple, but it seems to have survived and we have a loot of blooms on it.  Hopefully we will have apples again this year.  


The past 12 months have been unusual for the mountains.  We are having a second year of early, very warm spring.  But not as warm as down the hill!  I just saw a post that Costa Mesa is 95F.  That is summer weather, and we are just barely into May.  It was quite hot when we were down this week.  I found it difficult to tolerate.

i had been trying to be "dairy free" for a couple of weeks the end of April.  I found it a trial.  I know several friends who have improved being both dairy- and gluten/grain- free.  I manage the grains okay (usually, i cheat from time to time), but i find no cheese, butter, and cream a real challenge.  I'm not much of a "foodie."  I have certain things i like, of course, but i don't live to eat and would be pretty happy if i could manage, somehow, by being anorexic for the rest of my life.  

Which means, since i strongly believe that regaining my health and maintaining Duane's begins in the kitchen, i have to fight my natural inclinations when it comes to food.  

Still i see, every day, new reminders on Facebook of how well most people do with the Wheat Belly diet (which is largely grain- and sugar- free), and i see none of those benefits for me.  Well, that is not entirely true.  I have much less pain and almost no migraines these days, so i do benefit, but i was not seeing the weight loss i so dearly want.  Dairy-free was suggested to me as the next step.  I found it difficult, and it is my opinion, if you have to eat it just is not worth it without (healthy) dairy - butter, cream, cheese.

I think i may have lost a couple of pounds while dairy-free, because my "set weight" now for a while has been 172-174 lbs, and nothing much seems to change that.  I didn't weigh myself doing dairy free, but my first day of this new thing my weight was lower than it has been in a while.



This is me, with my two sisters, in early April, right before i started the dairy-free torture.

But last week i began an new program called, The Plan, by Lyn-Genet Recitas.  It seems to be an elimination program of sorts.  The underlying idea is that each person has different things to which their bodies react.  Poor reactions lead to inflammation in the body, which means the body retains weight.  In fact, she says that "healthy food" like oatmeal, salmon, and Greek yogurt are some of the foods to which most (not all) people react.  Learning which foods cause reaction and eliminating them can help facilitate weight loss.  After a period of time (3 to 6 months), you can try re-introducing things to which you reacted to see if your body has healed and will now accept it.  

So, today is day 8 of that. In the first 7 days i lost 4 lbs, from 169.9 to 165.8.  I've lost another pound now on day 8.  This plan does seem to work. I should be shouting and jumping, huh?  Well, one, this is only 1/10th of what i want to lose, so i've only just begun.  Second, i don't find this at all easy.  And because of that i am essentially not following the plan.

I did follow it pretty strictly for the first 3 days, which is the "detox" phase.  I did feel a little like i was detoxing - achey and a bit like i had mild flu.  I also did not - at all - like my food choices.  At one point about the third day, i was thinking if i had the choice to eat like that for the rest of my life and feel better, or be sick and not eat that, it would be a really hard choice.  

But i did find that i liked a couple of things when i was able to add things back in.  First off, one of the big majors is a toasted flax seed.  I do not like it as a "cereal" for breakfast - i don't eat cereal.  But i DO like it added to salads some or eaten like a toasted cracker.  Second, i found that blueberries and soft goat cheese are quite nice together.  

As i said, i'm not following the plan now - her suggestions for meals and what to "test" each day.  However, i'm following the plan in theory - eating only what i've already shown to work for me, and testing something new each day or every other day.  And so far it seems to be working, even tho i'm not following HER plan.  (She discourages what i'm doing because she says her meal plans are properly balanced.)  

I disagree with her on quite a lot of things.  I won't be adding grains.  I did one day of rice, and it was a mistake.  Anytime her advices disagrees with Wheat Belly, i'll go with WB/Dr. Davis.  She is also really down on salt.  Her recommendation follows the RDA.  I agree that processed food contains far too much processed/white salt.  BUT sea salt or other unprocessed salts are much healthier.  Also, if a person is getting proper nutrition with balanced amounts of salt/sodium, potassium, magnesium, and much more then salt intake isn't such a problem.

Anyway, i'm giving it a try!  

I also saw new doc this week, but i'll save it for another time.


540

22 April 2014

More trite tidbits

My head has been in a strange place, recently. 

I’ve decided i like the doc i work with.  It took a while to come to this conclusion because she is hard to read.  But after two years now i think i “get” her better than before and am satisfied.

She recently suggested i not come to OC weekly anymore.

Wow.  I don’t know exactly what was behind this suggestion, but it is powerful and negative.  I understand why she might say it the prep and coming down every week adds a lot of difficulty to my life.  However, i gain a lot thru it, too.  (I’ve had friends make this suggestion before and i’ve always rejected it out of hand.) 

It feels like giving up coming to OC is, well, giving up.  I’m a bit dismayed the doc suggested this for it feels like she’s saying she doesn't think she can help me.  Certainly, in the two years i’ve been working with her my functioning has decreased.  There is no where in bb that i can do the work i do in OC, so, essentially i would be giving up working.

Now, if it comes to this there will be compensations.

It might happen for reasons entirely unrelated to me.  Duane’s job has been, um, flakey, for a while now.  We are hanging on reasonably well and continue to enjoy our lifestyle with little change.  However, if the job ends and Duane ultimately ends up doing something else, life will become very different.  The only reason this works now is because we come down together.  I cannot drive myself, and i can’t stay in OC for five days at a time.

So, if i no longer came to OC, i would be looking at doing things differently in BB.  I might raise chickens.  We could get a dog.  I would be better able to come to OC on weekends for family events (maybe).  I would have to structure my life more for some functionality, because right now my life is pretty unstructured and i don’t feel like i accomplish much.  

But i’m still hoping for more functioning i’m not ready to give up yet!  I had improved functioning on some supplements last year (but my energy went up and crashed like a rocket).  I need to titrate the supplements for a slow, steady increase.  I’ve also heard of a couple of different treatments to try.  I discussed them with Duane and he is willing for me to give them a try.  I also try to balance my talking of this no one wants to hear of my woes over and over, and i certainly get tired of talking about it.  Yet it so impacts and impairs my life it is hard to ignore. 

So much more has happened.  We’ve had a very early spring.




I had another s.ei.zure a couple of days before i had company arrive.  That was a disappointment.  OTOH, i didn’t injure myself too much this time, only bit thru my tongue.  It happened in the shower again, when i was stressed and had not had enough water.

My parents and both sisters were out for a short visit the second weekend in April.  It was a good visit, but difficult, too.  One of my sisters sees most attempts at discussion as confrontation, and the rest of us were walking on eggshells not to cause problems.  This trip was for the celebration of my parents’ 55th wedding anniversary and none of us wanted to do anything that would injure our reason for being together. 


(My family - Duane, his parents, my parents, and my sisters.) 

Recovery from this visit underlined how much i’ve lost in functioning.  Even during the visit i was stuck in a recliner for a couple of afternoons; i could not do much at all.  My body just would not cooperate. 

A lot of other things have happened, or my brain has been focused on weird stuff, but that will wait for another time.

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