re: Sue from Micha

[Guest guest]

Hi Sue, how did it go Friday? I hope I haven't missed a post on this.

I guess, I need a medical dictionary for I'm not familiar with meds in general. I take is aspirin for the headaches, but it doesn't help for any kinds of other pains. Next to this I use Xanax. I started it for fears. But now I also use it sometimes for spasms.

My family-doctor prescribed an anti-depressant which is also a pain-killer, but I haven't taken it yet. The whole meaning is that they will slowly replace the Xanax and I will have sometimes that helps with the pain.

If I understand you right, than there's a chance the pain meds may cause the trouble?

I read your post about the pharmacy. I had a similar experience that the pharmacist interfered with my doctor's prescription on the Xanax. Apparently this seemed to have a great influence on my doctor, because of this she wanted me to cut down on it. I agreed for I'm so long on them and although I was careful with them, I'm aware I get used to them. But it isn't the right time 'though, especially since going to this physical rehab program and need to organize so many things for my disabilities.

I hope you're over the shame by now. I did understand it, although it made me angry at the time. My doctor ordered every prescription, so it wasn't as if she didn't know about it.

I hope this with the meds is solved. You just have an agreement with your doctors, so in my opinion a pharmacist mustn't interfere with this.

As your home is now in FL. it might just not be the same to visit a place where you don't have your own home and to know your children in the neighborhood. Here in Amsterdam people don't burn leaves. I think it might cause the police and the fire-brigade to turn out. The Public Garden Department takes care of the leaves. Nowadays instead sweeping the streets, they use a sort of vacuum-cleaner. At the moment it's 70 degrees F, so that's a good temperature. Last week we had a storm and showers.

That's nice you're taking a course. I've always liked studying, but I can't do it anymore. My study in business science was the first I gave up, because the brain fog already appeared years ago.

With joy and admiration I look up on you who can do a course.

That's really neat.

I don't work anymore. It was the last I gave up. I'm on social security disability now for three years. The first I asked in desperation was, what to do when I would get better within these three years. " Doing some volunteer work" the American disability doctor said. I could tell by his accent, he was American. Even before the diagnose fibromyalgia was laid upon me, the disability doctor put me on these three years.

Nowadays, I try to look at the bright side of this. I'm getting help and I will with my small house-hold. Someday, I'll move to an apartment with adjustments, meant for people with disabilities. I feel a bit like moving to a elderly home too soon, yet it isn't a home. The way my disabilities are increasing it might be I need to a house next to a home for disabled where I benefit all

Although I can't do so much else than climbing up against the walls - even so to speak, no bungy jumping here :-) - I can't even do my own small household.

It don't need to have a flare to need to choose between having a shower or cooking my dinner. So, I'm in admiration you take care of your grandson during the day. In general I wonder how people

with children do this.

I think, the most important thing is each of us individuals value our own abilities. I try to pat myself on the shoulder for things I never valued before, but lay sometimes in my abilities.

It doesn't always feel like a pat on the shoulder, yet I try to change my mind on this by keep on looking at the things I did, instead didn't do.

You take care too. Love.

micha.

Micha

Hi Micha! thank you for your good wishes about my bloodwork...was scared..now I just want to know whats going on! I do take alot of tylenol as its in two of the pain meds I am on so I will try to get my Rheumy to change the darvocet to something else....I know the Lord wants me to rely totally on him and not be afraid of tomorrow....I've always been a worrier type so thats something I have to work on! I do like the fall weather...I miss the leaves turning colors and and those cool evenings with the smell of people burning their leaves!! But you know....we went back to Indiana a few years ago and I had always thought it was my home deep down....couldn't wait to get back to FL !! Maybe if I was there longer when we went it would of been different...I know we have alot of old friends there and I do miss them! My kids are all here in Florida though..so here I want to stay.

Do you work? I stay home now and take care of my grandson all week while my son and daughter in law work all day. I am also taking a Bible course (correspondanse) through Liberty Un...am almost done and then I can take other courses...it very interesting. Write again soon!! Take care...Love from---->Sue

[Guest guest]

Hi Sue, I hope you will hear soon more from your primary doctor about the test-results. Especially, if there can be done something done about your liver-enzymes, perhaps. Did you hear anything?

I find the waiting-time the hardest part mostly.

Very stressful too.

That's the way it ought to be, to have a good doctor, or even two.

I've put all my hopes up in the rheumatologist. The Dutch lupus foundation referred me to two rheumatologist here in the city and I try to find out who of the two are the most humane, I don't want the technique best one.

You are right to be parenting your grand-child, yet I wish you many happy days of independence, for you to come.

I have so many days, I need to go to bed a few hours after I got up, so I can very well imagine you feel like going to bed after your husband is gone.

I have felt like such for years, and carried on and on. I was a kind of work-aholic, not for the work, yet for the so many things behind it. I made my health so much worse by carrying on.

I live from day till day now, even from hour to hour.

I got so worse by my thought I could work. Just after one meeting, I could go into a flare for weeks. Sometimes for months even.

We are all different, in our health, in hopes, in what keeps us upright today. I can't think of any future, only based on how my health goes now, so I learned to live on a day to day base, even on a hour till hour base. I feel the less depressed by this way.

I'm right behind you, when it comes to doing things to develop your skills. Aren't there any safe places, where your grand-son can develop his skills and get love, surely not the same as with you, but perhaps just a few hours?

It was my choice to never have a partner who took care of me.

I think, to hear in your words you want some hours for yourself.

What do you need, so you can fulfill your needs.

Only you can, for you know what they are.

I have freedom in no commitments to relatives surely not, yet I do have friends. I do have children too, two live and I don't know where, and will never know, where.

I care about myself a little. I need to do more and I do, more than when I worked.

To you, I think, I understand you very well about taking care of your grand-son. With MTCD/lupus, the body, no messing around, you probably can learn me so much more.

Great, the way you walked out the family-situation and chose for the most, less stressful day.

Thank you for sharing.

I hope all your days may be indepences days, for you.

I am looking now for an easy course, I found several courses I'm interested in, yet they all need home-work, only three lessons a month. I'm not so sure if I can handle this, for the brain-fog.

I can't know if my hands will work to make the home-work.

There are a few obstacles more, yet I feel inspired by you and Athena, to learn.

with sweet greetings from Micha.

Re: re: Sue from Micha

Hi Micha!! Its nice to hear from you! My liver enzymes were up and I thought maybe the tylenol that is in two of the meds may be why. My husband has Hep C and of course that thought occured to me that I may have contracted it from him...I called my two doctors today and asked told them about my liver enzymes and they were going to call my primary to get the bloodwork faxed to them for them to see....didn't hear from them yet. About the pharmacy incident...I did stick up for myself which made me feel a bit better. I just get tired of being hassled...I want to scream "This isn't fair!!" at the top of my lungs sometimes...although now I do have actually two good doctors which I am blessed to have. I am also so blessed to have an angel for a grandson...he is easy to care for...he learned to walk and talk early and he is so cool! He does far more for me than I do him! His hugs and kisses keep me going....but I do get tired ! sometimes and just wishI could go back to bed after my husband leaves in the morning...but then one day I will not have Jake here anymore...he will be in school and may not see him much. Thank you for all your kinds words! I wish I could get back on track with my course...I need to finish it and yet it seems like much of my time is not my own. Or..I give my time away!! LoL.. I don't work either...don't think that I will be able to for awhile...I would like to think that I could at least part time....I never say never. I would never do that I didn't work long enough to get disability....and don't qualify for SSI as my husband makes too much money and we don't have dependant children at home. I may have to try and do something.

Take care and hope you have a wonderful evening!

love from---->Sue