Hi khaya,thanks for all your sharing, i really do appreciate it. and yes, i guess we are friends now. when i lived in spokane wa, where i raised my family, i had some friends in church and a few parents of my kid's friends. but like you sai

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Hi khaya,thanks for all your sharing, i really do appreciate it.  and yes, i guess we are friends now.  when i lived in spokane wa, where i raised my family, i had some friends in church and a few parents of my kid's friends.  but like you said, after so many declines of invitations, they seem to go away.  then we moved to the west side of the state and started building and getting sick, there was no opportunity to make any friends.  my son kept at me to get into another local church and make friends.  i tried to explain that it takes energy to do that, but he could not understand. i don't know if anyone can understand until they go through this.  hopefully, though, they can learn to accept that there are things in life that come along that change things beyond our control.  

my mother will not give up her sweets.  mainly because she is in denial that she even consumes much.  again, she thinks of 'sugar', not all the stuff that it is in.  my one sister who visited told me that she can't understand the 'reasoning' of why she can't have it.  but we are all working on her to cut down, so maybe a little bit at a time we can reduce it.  however, if she doesn't change, her decline will progressively increase, leaving her having to accept loosing her independence.  then we will have some control over her diet.  until then, not much we can do.  we have tried.  my husband said i have to back off because it is causing more stress, for mom and me, and that is unproductive also.

also, i too have had to go through sugar withdrawal, several times.  it is so addicting, people don't realize it until they withdraw.  as far as getting mom's dr on board, he is worthless.  their office walls are plastered with pharma posters and the dr only wants his fee for the 10 min.  my folks complain about that, but do nothing to change.  so weird.  actually, we got my step dad to go to a more local dr here because he needed more care and this was closer and easier for him.  but again, we are working with conventional med. who just don't know. 

 took my mom to a g.i specialists because of all the g.i. problems mom was having, and this dr had absolutely no suggestions other than a colonoscopy, which they seldom do at mom's age, and to go down her throat into the stomach. other than that it was just proton pump inhibitors. she said that they have many patients who are on these and do fine with no stomach acid. my folks won't pay for a n.d. as we have suggested to get better care.  if medicare doesn't cover it, they won't go.  not much we can do until they can't take care of themselves.  just the way it is and we have to accept that. 

i really do know that raising children is making a contribution.  i have good kids. they have their 'quirks' like all of us, but they are mostly well grounded, good productive citizens and loving kids.  i am very grateful for them.  and i have to realize i was the best mom i could be.  my children always came first and i was always on their side, and they know it and appreciate it. my health did interfere, but i was there for all their games, school events, church events, and whatever else they did.  and i think it paid off, and again, i'm grateful.

breakfast dishes???  i don't think i can distinguish breakfast dishes from all the other dishes!!!  some days i can keep the kitchen up and some days not.  but i'm ok with that.  my husband would like a more orderly environment, but he is 'growing and learning' that it's ok to have some things out of order. i'm a good teacher.  i like my daughter in laws approach, remember she had 4 kids in about 6 yrs.  she said that clean counters are over rated.  so i fall back on that a lot. 

 i've come a long ways from super mom and relaxed my standards a lot.  i remember when my kids were still in school and theirs all their friends bikes were all over the lawn.  mom looked at it and asked me 'doesn't that bother you?' (her yard was like a part).  i said,' i can't afford to let it bother me'. so i have chosen to fall back on that standard.  do what i can and let go of what i can't.  i don't always let go perfectly, but i'm working on it, as we all are.  

take care, barbara

 

Dear Barb,

After all we have recently shared, I think it is safe to say that we are now friends. And I also lost touch with many friends and even some relatives. I suppose some of those friends might have been lost even if I didn't have LD--who can say? But it takes energy to maintain a friendship. When people reach out and you keep saying no, for whatever reason, they give up. The lack of energy and the depression--not only friendships have suffered. Sometimes I don't even have the energy to read, so I just listen to music or watch TV. Luckily that is not as frequent as before.

Why do you say you have not made a contribution to society? One of the great wrongs that has been done to women is lack of appreciation for raising children, which you know is quite a challenge. My only real ambition was to raise children, but since I never had any (undiagnosed LD and gluten-intolerance), I continued to work. I will email you more personal details ... later ...

Also, I do not believe I have been as debilitated as you are. For one thing, I do not believe I have any tick-borne co-infections. I have funguses and viruses, and I've struggled for years with heavy metals. But the only time I was unable to cook meals, etc., was immediately after surgery. I thought I used quite a bit of sick time, but I cashed in quite a bit when I retired. There were many days when I came home from work, made supper for myself, and went to bed. But there were also work days when I went out to dinner and to a concert with friends. Life without a husband or children was much easier for me in many ways. My second husband makes my life even easier--I am so lucky!

I was treated as a hypochondriac all my life, because there was so much time when there was no apparent reason for me not to feel well. But when I did have a recognizable illness my parents were wonderful with me. Over the years that pattern continued and friends and family often struggled to be patient with me. But once I was diagnosed with LD, which was just beginning to be known and publicized in 2000, they could all accept that. (Except my mother, who by that time had no sympathy for anyone but herself.) In fact, I think others accepted it more than I did. I expected that, once I was diagnosed, I would get well quickly. My husband knew better, and was very upset. But I was elated that we finally had an answer. I was unaware that the treatment can make you feel even worse ...

Well, here in Michigan it's almost 11:00 and I haven't even done the breakfast dishes yet! I'll try to email more later today, if I can fit it in.

Your friend, Khaya

>

> khaya,

>

> we are very similar. my real dad died in 1996. he had been a greyhound

> bus driver since i was a little girl. he started when it was WA motor

> coach then changed to g.h. he held, at the time, the highest safe driving

> record g.h. had given out. actually, never had an accountable accident

> with them. i have one of his awards, a chime clock that i cherish. before

> age 62 he started to have some problems but wouldn't give in to them. but

> he soon felt he would put others in danger so retired at 62. soon after he

> began to have heart attacks and strokes. he started to forget people, semi

> bed ridden until finally totally dependent in bed. it took 5 yrs of this

> and we cared for him at home. really hard on my mom.

>

> in may of 96, two days after my daughters wedding, which he attended in a

> wheel chair, he had his final stoke which affected swallowing. we could

> not give him anything to drink or eat, he would die, and he did, within a

> wk. on memorial day, at home. so hard to not be able to even give him a

> drink. if we had he would have choked. after a few days he slipped into a

> coma.

>

> the following sat. my husband and i were married and then the following

> day, sun. was his memorial service. so in two wks we had 2 weddings and a

> funeral. we had decided to go through with the wedding because family had

> come some distances etc. so everyone was home for the weddings, and stayed

> for the funeral. but it was comforting to have everyone there.

>

> my dad's driving was a problem because of his occupation. he thought he

> could always drive. mom started complaining about his driving off the

> road. didn't take long and that came to an end. but one day he made it

> out to the care and wouldn't get out. he had no keys though. we called the

> fire dept. and they decided to remove him might cause more harm to him.

> called my brother and he finally convinced him to get out. he was in

> there for over 4 hrs.

>

> my step father is starting to not be able to stay in the lane when he makes

> turns. mom is commenting about his driving also. didn't know the driver

> licensing place made decisions on this. i think his license isn't up until

> sept. so will see.

>

> i have often wondered about being born with candida. i've had separation

> anxiety and stomach problems my entire life. didn't have the meds like you

> until my teens though. then since 1980's they made up for it. for my s.s.

> disability had to list the meds and they fill almost 2 pages. because i've

> been so sick for so long my family, in some ways, have grown tired of

> hearing about it. one day my daughter said, 'doesn't anything work on

> you?' i said no, not much. they were not very patient with the lyme

> diagnosis and all the problems and possible 'cures' i was hoping for. i

> think my kids, who have really only known me as sick, starting thinking i

> was a hypochondriac. then their dad's sister got lyme, almost died from

> not being able to eat. well, then they took another look and realized lyme

> was real and not just 'mom being sick again, still'. they seem more

> patient today towards me. i have a sister who is a saint and has been a

> huge support through all this and the benzo recovery. but i have had to be

> careful and not talk about my health issues of late. guess it's good to

> not focus on them with others. others just don't understand and grow tired

> of it. with fibro it seemed i just kept going, pushing, but this is totally

> different.

>

> i never had a career like you. i was always a homemaker. did a couple

> short jobs. in 1995 when i first divorced, worked with an attorney. they

> fired me because i was too sick to do the job and actually helped me get

> ssi for fibro. then i worked as a notary doing in home loan signing for a

> few yrs in the mid 2000's. but having to function and the stress of it,

> wore me down to where i was too sick to work again. i did manage to get

> enough credits and have applied for ssdi and have my hearing in june. hope

> it works, it will give me insurance for awhile before 65, as it is i'm

> not insurable. sometimes, unlike you, i don't think i was able to make

> much of a contribution to society.

>

> my first husband was the son of two alcoholics and so our life was kind of

> crazy because the counselors said he was like a dry drunk. when he started

> to become abusive to the kids, teenagers, i was done. i had held it

> together until then, pretty much by myself. i was a super mom then. so

> i guess that was my contribution.

>

> so today, i am learning to do it day by day. type 'a' personality is gone

> and i'm learning to procrastinate with the best of them. once in a while i

> get a spurt of energy and take advantage of it and it feels so good to be

> productive. then the next day, back to the recliner. i'm hoping that by

> living with my husband's daughters family it will give me a purpose to

> function. a reason to get up. it is so easy to just sit here. with just

> fibro i was often able to overcome the physical with the mental drive, but

> not now. so i'm hoping that when the benzos are done and i can do the vit

> d,b,and some other supps, overcome some of this depression i may get some

> 'umph' back. but if i can't i can still sit in the recliner and have my

> little 8 yr old grandson bring me my water. i loved it when my g.kids were

> here, they loved to get my water.

>

> well i should quit writing, i do ramble on so. time to go coil. my

> husband is an early to bed, early to rise. i'm opposite. my cortisol

> levels are almost not there in the a.m. and very high at night. so i have

> to get my coiling done early so he can sleep, otherwise i'ld be up till

> midnight. i'm working on changing my schedule because his is a healthier

> one, but i just do not function until about noon, no matter what time i go

> to bed. but off i go.

>

> take care and i loved talking with you. i have no friends anymore except

> my sister. are most here in that situation?

>

> barbara

>