my update

[alexciasmom]

ýSo its been a wile sence i have done a update on myself for ya all.

Well here go's.

Christmas was busy, felt like crap most of the time. Still feel like crap. I have a sinus inf, ear inf, and pneumonia. And now the thrush is back. so its been up and down. all of you know all about that right? so my pred is down, and i now have neuropathy!! with Mom, gma, and my sister all have been in the hosp. Gma has Renal kidney failure. Mom has Pernicioous Anemia. My cousin has MS and fibromyalgia. and my sister has neuropathy, Ra, Psoriasis, and scoliosis. And we have all been diagnosis in the last year.

I am on a bunch of meds. I am totaly lost on what is my normal and whats a flare up. Heres a list of my meds. Any thoughts????

fluticasone propionate 2 spray each nostral 1x. Only 3 days a week. For synus crap.

Genteal each eye 1x. 3 days a week. For eyswelling, and dryness.

Zantac 150 prn. Not on any more.

Hydrocodne 10-500 prn. 3 days a week 0 to 3. 4 days 3 to 4. For back and joint pain.

Metformin 1000 2x. Every day for type 2 diabeties. Sugers run 135.

Gabapentin 600 2x. Every day for np in hands and feet.

Ondansetron hcl4mg prn. One or two a week. For vomiting.

Levoxyl 125 1x. Every day for hypo thyroid.

Ramipril 10 mg 1x. Every day for bad fam hist of heart probs and diabeties. Don't know what pb runs but low enuff if it was any one else they no worrie.

Folic acid 1mg 1x. Every day but Sunday. Cuz of mtx.

prednisone 12.5 mg 1x. 1 to 4 days a wk 10 mg the rest 12.5. For joint pain and swelling.

Fluconazole 200 mg 2x. Every day why I got thrush till ani fungle runs out there thinking of adding mouth swish.

methotrexate 2.5 mg 6 tabs 1 a wk. Sunday only. For wg.

Advair 250/50 2x. Every day when I remember. For ashma.

Ventolin 90 mcg 2x. 4 times a week. For asma.

Morphine sul er 30 3x. 4 days a week 1 to 2. The rest 2 to 3. For joint pain and mucle pain. I up this med befor I add the lortabs.

Cymbalta 60mg 1x. Every day for damagde pain in lft foot. And nerve pain.

Wecol is how I think it spelld. 1 to 4 a day. I take 1 to 3 a day.

I have a spreed sheet that makes a pie chart with days and weeks. With all symtons entered and times they start and end. Then what times I take what meds. So we can't track any issues. I take this to all dr appt. The dr let me self adjust to how I feel on a lot of it.
O joy right. and lets not talk about the emotion rollercoster.

[annekat]

Wow, that is a lot of drugs. Sorry I can't help you much with what might be a flare vs. what is normal, but I think it is normal to be having symptoms if you are not yet in remission and are trying to taper your prednisone. Others can help you more with what would constitute a real flare. The current infections you have sound scary and could contribute to triggering a flare, I think. Since you live in Salt Lake City, are you seeing the Wegener's specialists at the University of Utah? I hope so. That's what I'd hope to be doing if I was anywhere near there.

[annekat]

Oh, and sorry to hear about your relatives with serious health issues, too. That is a lot for one family to deal with.

[Dryhill]

Alexciasmom, are you taking 1mg of Folic Acid a day? I am on 5mg more of Methotrexate a week than you but take 5mg of Folic Acid once a week. There is not a lot of difference in the quantity but it is interesting how doctors have different ideas about taking these meds. Also as far as I can tell you do not seem to be taking anything to help combat the damage Pred does to your bones. I am on two calcium tablets a day plus another tablet once a week.

Boy you and your family are having a rough time, I hope you all start feeling better soon.

Jim

[pberggren1]

Those are a lot of meds for sure. Just wonering about Metformin? Do you have diabetes? Do you have SS or Asthma?

[mishb]

My goodness, it's no wonder you keep getting thrush with that cocktail combination.

I was going to say the same as Jim about the calcium.

I think it would also be a good idea to take a probiotic to include some good gut flora, should assist with the thrush also.
(I don't know half of the names of the meds that you are taking so you could possibly be taking them already).

I hope everything sorts it self out in time for the big party.

[alexciasmom]

Yes I have diabetis type 2. And my dr cks my calc evey month and its fine.

[Al]

Yikes--a walking pharmacy! With all those other drugs, I am not surprised you need the cymbalta. In any case, you have clearly been through the wringer. Is the high glucose drug exacerbated? I hate to thing about your having to take another drug, but usually the thrush has to be knocked out by a anti-fungal, usually in syrup form.

In your case, it may indeed be hard to know when you are having a flare, given all you have to fight through. I hope you are having regular blood tests....

Al

[alexciasmom]

All three of my dr do blood and urin every month. I take antifungal every time I get thrush I have had it 9 times in 12 months. There doing a tummie scop on the 20th. And the funny thing is the cymbalta is for the neropthy and not my moods.

[Sangye]

Holy smokes!!! I'm having a really hard time believing that all those meds are justified, as there are so many that are redundant. You're on Morphine AND Hydrocodone AND Gabapentin AND Cymbalta for pain?? What is the source of the pain?

Also, my antennae went up with the sinus infection, ear infection and pneumonia. Pneumonia on mtx is very likely to be pneumonitis--an allergic reaction to mtx. This is very common and often misdiagnosed. (Happened to me!) If it's not a reaction to mtx, I have to think that all 3 are due to active Wegs. That would also correlate with severe pain and development of neuropathy.

Thrush can be treated holistically:
1) Take a probiotic daily. Get a mid-priced brand from a health food store. Pricey ones with added stuff are not necessary. I like the brand PB-8 since it's decent quality, affordable and available everywhere. Take 5-7 billion units a day (2-3 capsules) on an empty stomach (ie, 45 mins before eating or 2-3 hrs after eating). If you usually get up in the night to pee, take the daily dose then. Stay on the probiotic even after the thrush clears up.

And
2) Drink apple cider vinegar daily. Use organic, unfiltered ACV with the "mother" in it. Braggs is a good brand-- inexpensive and available in every health food store. Add 1 tablespoon ACV to a glass of water and swish some around in your mouth before swallowing. You don't need to swish all of it, but drink the entire glass. Repeat 2-3 times a day until the thrush is gone. ACV corrects the pH of your GI tract, making it inhospitable to yeast.

And
3) If you're a sugar junkie you'll need to ease up a lot or stop completely since sugar feeds the yeast. It's rare to see yeast problems in people who don't eat a lot of sugar. The good news is that as the yeast disappears so do sugar cravings.

I cannot tell you to stop taking the Fluconazole since I'm not your doctor. But adding these 3 holistic remedies will not interfere with it and work great. They won't interfere with any of your meds, and they won't annoy the Wegs dog. :wink1:

[pberggren1]

Thanks Sangye for posting this. I was trying to say this but the pred head is in the way.

[Sangye]

Man, I thought my head was gonna explode when I saw that list. I've seen so many people overmedicated, especially with pain meds. They wind up with tons of symptoms that no one can figure out-- drug interactions and side effects. :sad:

[pberggren1]

A friend of mine is on about 40 different meds. At least 7 of those are pain meds. He never tells me what he takes. I ask him now and then what changes and he says not too sure just what the doc said......I don't know how he lives. He seems like a zombie most of the time. And when not a zombie he is usually pissed off about something. One time he went to the washroom and I took a peak in his med cupboard......WOW! I was blown away. He says he needs all of them or would die in about 2 days if even one of them was taken away.

[Dryhill]

Yes I have diabetis type 2. And my dr cks my calc evey month and its fine.

They checked my calcuim levels and all seemed fine, then they did a bone density scan and found that my bones were not as dense as they would like and immediately put me on 70mg of Alendronic Acid a week.

Jim

[Al]

Sange says an important thing: The more drugs you take, the higher the risk of bad interactions. Side effects expand arithmetically; interactions geometrically.

"Calcium levels" say nothing about bone lose. When the body needs calcium that is is not getting through diet, it leaches the bones to get its fix. A bone density scan once a year is appropriate for anyone on prednisone. Much better than drugs to keep bone density is gravity resistance work, assuming that you can actually do it: walking, light weight training, and so on. Again, drugs drugs tend to have side effects.

Al

[alexciasmom]

wow you gave me alot to talk to my doc about. i will have to print this up and bring it in so i dont forget any of it.

[Al]

A friend of mine is on about 40 different meds. At least 7 of those are pain meds. He never tells me what he takes. I ask him now and then what changes and he says not too sure just what the doc said......I don't know how he lives. He seems like a zombie most of the time. And when not a zombie he is usually pissed off about something. One time he went to the washroom and I took a peak in his med cupboard......WOW! I was blown away. He says he needs all of them or would die in about 2 days if even one of them was taken away.Ths is often the case with vets--particularly those with PTSD. Their docs get far more "bang for the buck" treating them pharmaceutically, esentually masking the symptoms, rather than going putting them through talk therapy and counseling.

Al

[gunnyl]

I'm taking MTX x 8 Tabs once a week and my doctor has me on 1mg Folic Acid a day as well.
I have pneumonia, hopefully the antibiotics are working because my Pulmonologist is going to admit me on Wed if they don't.
Sangye, great advise on the natural remedies!
I've used ACV in the past to takle PH levels in the GI tract. Works wonders!

GL

[Palmyra]

I agree....the more meds, the more side effects. Antibiotics and inhalers for asthma will contribute to thrush (fungal growth)

Question: How often do you use your inhaler? Is your 'thrush' confined to the mouth (if so, I can help and will send a private message) Has anyone done a sputum culture to determine what type of organism might be causing your pneumonia?

~Jane

[alexciasmom]

ok i will go in to my first post and edit it to explaine more

[alexciasmom]

Today I feel like the tin man from wizard of oz and I lost my oil can. My head feels like a soda can took to many rides on the tilt a whirl.

[gunnyl]

Ths is often the case with vets--particularly those with PTSD. Their docs get far more "bang for the buck" treating them pharmaceutically, esentually masking the symptoms, rather than going putting them through talk therapy and counseling.

Al

You're 100% right on that Al............Sad but true...............

GL

[alexciasmom]

O yeah yesterday the doc took me off the morph and added oxyicoton and off lortabs and added pircocit. Then uped my gabbipenton and cymbalta. Sort can't spell right now my head hurts. To much. Have a good day all best wishes.

[gunnyl]

alexciasmom,

That is way too many pain meds............In my opinion!

GL

[Al]

alexciasmom,

That is way too many pain meds............In my opinion!

GLI agree. With all these meds, it is really hard to know what is working and what is going the wrong direction.

Al

[me2]

I know just that many pain meds would mess me up. They are a viscious cycle to get on. When I took them no one told me about their effect on bowel movements either. I froze up something fierce. Now when I have to take those class of pain meds for even short periods of time I do a pre-emptive strike with Senna and stay on it until I am done with the pain meds. It works for me.

I saw a chart in the newspaper recently that showed state by state what regions were prescribing narcotic pain meds and by what quantity. I was shocked to see areas of the country where docs were prescribing very large quantities. And not surprised that my state was very low. My docs are loathe to give out meds like percocet, oxycodone, oxycontin, morphine etc. I don't know why other areas are handing them out like candy.

[annekat]

I know just that many pain meds would mess me up. They are a viscious cycle to get on. When I took them no one told me about their effect on bowel movements either. I froze up something fierce. Now when I have to take those class of pain meds for even short periods of time I do a pre-emptive strike with Senna and stay on it until I am done with the pain meds. It works for me.

I saw a chart in the newspaper recently that showed state by state what regions were prescribing narcotic pain meds and by what quantity. I was shocked to see areas of the country where docs were prescribing very large quantities. And not surprised that my state was very low. My docs are loathe to give out meds like percocet, oxycodone, oxycontin, morphine etc. I don't know why other areas are handing them out like candy. I've been watching those Intervention shows on TV about people who really get messed up with drugs, and the pain killers listed here are involved in many of those cases. They can be very dangerous, especially when combined with each other or with other drugs or alcohol. I'm not suggesting anyone here is in that much trouble, but I think we need to be very careful with these!

Kirk, I'm curious, what is Senna? Yes, I could look it up......

[me2]

Well, I had to look it up. Wikipedia has lots of good info. The short answer is that it is a plant with laxative properties.
My knowlege of it is from my sister in law who has been a nurse forever (especially if you ask her) and worked a lot in elderly care. Senna is renowned amongst her people as being effective and gentle. Many laxatives are a bit harsh or don't work real well.
Senna is supposed to be one of the best, I can attest to its effectiveness. I became aware of how great it is when I had hernia surgery. Recovery was rather slow and painful. Okay, a lot painful. The combination of pain killers ( causing constipation) and the location of my wound made the Senna an absolute hero to me.

[annekat]

Thanks, Kirk! That sounds like a really good one to keep in mind in case one ever needs such a thing!

[alexciasmom]

Just got back from dr and my anka level is high so we start retoxon gain. He's trying to get it app with ins.

[pberggren1]

Oh ****! I thought you were flaring.

[Al]

Just got back from dr and my anka level is high so we start retoxon gain. He's trying to get it app with ins.Sorry to hear this. Let us know how the rituxan works out....

Al

[alexciasmom]

i was thinking i was but was not sure. but with all the systoms and blood work. says yep i am. and about the pain meds. i dont know what i would do with out them. i dont take them every day or as much as the dr has rx. she lets me take as needed. so i wate till i cant handle it then take them. and we are realy watchen for symtoms and signs of me taken to much.

[Sangye]

Holy smokes, too many pain meds and dangerously addictive ones at that. If you're in that much pain the Wegs is highly active. If it were me I'd get off of those pain meds asap after starting treatment.

[alexciasmom]

O I have gone months with out them I only take when absolutely need too.

[alexciasmom]

I have a 6 year old, a 60 year old, and a 89 year old to care for. So I only take them if I need and when I'm no caring for them.

[Psyborg]

Don't forget you have a you to take care off as well :)

[Lightwarrior]

I have a 6 year old, a 60 year old, and a 89 year old to care for. So I only take them if I need and when I'm no caring for them.

You have to decide when you need them. If you can function without them that is the best, however quality of life is important. Your quality of life is important and you are the only one who can decide what you need to make that happen.

[alexciasmom]

You have to decide when you need them. If you can function without them that is the best, however quality of life is important. Your quality of life is important and you are the only one who can decide what you need to make that happen. that's exactly how I feel. Thank you for putting it so well.

[alexciasmom]

Well mom freaked out and moved mom and grandma out. So well I don't have that stress. But what it comes down to it mom can't handle I'm now a different person because of wg. Well chin up..:D

[alexciasmom]

You know I just wish my family and friends would research wg and the treatments. And read theses forums to kinda know what I'm going threw. Is it to much to ask them to get off Facebook for 1 hr and do this. Or am I over stepping my bounds?

[annekat]

You know I just wish my family and friends would research wg and the treatments. And read theses forums to kinda know what I'm going threw. Is it to much to ask them to get off Facebook for 1 hr and do this. Or am I over stepping my bounds? No, I don't think that is too much to ask of them at all! Or if you could forward them information or posts to read that you feel would be especially helpful, and they should read them! But I understand why you would want them to take the initiative to do it themselves.

[Dryhill]

You know I just wish my family and friends would research wg and the treatments. And read theses forums to kinda know what I'm going threw. Is it to much to ask them to get off Facebook for 1 hr and do this. Or am I over stepping my bounds?

Surely it is not just a reasonable request but something anyone who cares for you would automatically do. My estranged wife was diagnosed with Menieres Disease some years ago, not have living together for twenty odd years did not stop me finding out about her ilness and seeing what I could do to help.

Next time your mother visits you why not sit her down in front of your computer and ensure she reads some of the items on the forum. Hopefully she will have a better understanding of how you feel and what you go through.

Jim

[pberggren1]

They should take the time to talk to you. They should trust you.

[Al]

You know I just wish my family and friends would research wg and the treatments. And read theses forums to kinda know what I'm going threw. Is it to much to ask them to get off Facebook for 1 hr and do this. Or am I over stepping my bounds?You would think this, but, just to play devil's advocate, allow me to point out that the idea of empathy is really hard. Oh, it sort of works for victims of gun violence, or the ravages of fire, or something else that is visibly obvious, but WG is not nearly so obvious. (You don't look sick!). So, no, you are not overstepping your bounds. But you can't expect too much of people, either.

Al

[alexciasmom]

Thanks for all your best wishes.. You don't know how much you all meen to me :D:D:D:D:D:D:D. Not only did I loss them physically but emotionally as well there's only three family members on my side that will talk to me
I guess I messed up big time..

[alexciasmom]

Well its been three days sense mom and gm moved. In that three days I only have half of house clean and rearranged so rather wg has made me slow. Or in just lazy.o.o.o. I know my I issue has clears up because know my medicines have altered me so I now have super eyes. And so now I see dirt every were. AAHHGG!!!!!!! Quick has anyone seen my spandex? Seeclops to the rescue!!! Off off and aways!!!

[pberggren1]

u didn't mess up.

[Lightwarrior]

Thanks for all your best wishes.. You don't know how much you all meen to me :D:D:D:D:D:D:D. Not only did I loss them physically but emotionally as well there's only three family members on my side that will talk to me
I guess I messed up big time..

You didn't mess up, I agree with Phil. This is always a safe place to vent. I'm so sorry that your family doesn't understand. I don't think my family fully understands weg, they just know that I can't do what I used to and they take care of me. Since I am sole support of all 10 of us I worry about what will happen when I can't work anymore, they are emotionally supportive but they really don't get what it will take to run our family financially..

[Al]

Thanks for all your best wishes.. You don't know how much you all meen to me :D:D:D:D:D:D:D. Not only did I loss them physically but emotionally as well there's only three family members on my side that will talk to me
I guess I messed up big time..As I said earlier, people are people, and people are weak. Statistically, men are worse dealing with sickness than women, but true understanding is hard for anyone who isn'!t as sick as you. (We on the forum are, of course, also sick people, so you can vent as much as you like here!)

Al

[Al]

You didn't mess up, I agree with Phil. This is always a safe place to vent. I'm so sorry that your family doesn't understand. I don't think my family fully understands weg, they just know that I can't do what I used to and they take care of me. Since I am sole support of all 10 of us I worry about what will happen when I can't work anymore, they are emotionally supportive but they really don't get what it will take to run our family financially..
Wow. It might be time, I think, to wean them--for their own good. Just sayin'....

Al

[alexciasmom]

Thank goodness' my hubbie makes enuff that I don't have to work. I am not sapos to work right now. So.i got approved for disability. It felt like my family was sucking the blood right out of me. But my daughter now has her room back. But my sister and my mom mad at me and not taking to me cuz I asked my mom to see if grand ma hid some she's 88 she sometimes does that and the smell will make me throw up. I whispered it to her in kitchen and she says I yelled it. That why they moved. Other sister is mad cuz I told her to come pick up her daughters computer. Her daughter is mad cuz I can't afford to pay her to help clean cuz I have to pay that huge ritouxin treatment copay. And her 21 year old buff son wanted to kick my butt over what I saosably did to mom and grand mom. So every one on my side but net 22 year old son and my cousin are not talking to me
but I have gotten 5 or more hrs of sleep a night sence they movies. That's alot for me. Sorry about typing my computer down and I have a hard time some times with my touch screen phone recognizing my phingers from the neuropathy in them. Thanks for letting me vent It meens alot to me. Kisses:P

[pberggren1]

You vent any time you want to. That is why we are here. If you feel the need to vent and let it out you do so. It is not healthy to keep this stuff in. And by the way, your family needs to grow up and treat you a lot better and respect you more.

[Fran]

Hope the family issues get better soon - not easy when your nearest and dearest don't understand about WG and also how it changes us, but then it is a lot to take in when you think about it. I am in my 14th year and I still can't make head or tail of it. It must be a lot harder for those of you with youngsters to bring up :ohmy:

Fran

[annekat]

I think you are better off with fewer people in the house and more time to yourself, to sleep as long as you want and have less stress. I do hope you and your family can patch things up. They do need to get a better understanding of the seriousness of what you are going through with WG, the expense of the meds, the pain and tiredness, etc., and the fact that you need their support and help and not their bickering at you. Congrats on getting disability, as we know from others on here that it is not usually easy and often impossible.

[alexciasmom]

Thank you all so much. I really do need some one to talk to you guys are the best. My family just made me fell lime they ripped out my heart and mushed it. I told my cousin and nephew I still talk to i don't want to here about what's going on with them right Dow unless its some thing seareass cuz i can't take the drama right now. . And lucky there not taking sides. I did get some yard work done yeahh. O and i start rituxon on Monday. Yah lol.

[pberggren1]

We are your family too and will not judge you. We are here to support you in any way we can.

[Dryhill]

I agree with everything Anne, Al and Phil have said. I pray the RTX treatment will go well.

Jim

[alexciasmom]

aHhh thanks.... I going to cry in my beer. Well root beer lol

[Al]

Thing is, you need time to deal with your own problems and fatigues. It sounds like your family is willing to meet you 40 percent of the way. But they don't realize that that those ratios need to be reversed. I say, too bad if they are offended. You did what was needed. Now goo have a root beer. Just one, mind you, because of the high fructose corn syrup....

Al

[alexciasmom]

Ahhh man to late I had two. Ops. Lol. Over the past almost year I have been on this site you guys have made me feel like part of the family. And I do thank you. I have looked and looked and there's no face to face support group here for wg let alone resources to help us. My cousin has ms and we were talking there every were. And we were talking about our dieses systems and all its weird ok it's not but u go up to anyone and say I have ms and even if they don't know about it much or at all they know it's bad and go o man in sorry. But u say wg and you get the deer caught in a head light look. ,and she tells me I may have ms and fm but at least I don't have what you have..??? So it makes me wonder alot about it all. And omg my not to sweet niece sent me a horrible text. What it came down to is she says I deserve to die alone. OMG I can't Beale e it.. WTH...o well she's only 18 hope she grows put of it.. Lets say a prayer.

[Al]

Ahhh man to late I had two. Ops. Lol. Over the past almost year I have been on this site you guys have made me feel like part of the family. And I do thank you. I have looked and looked and there's no face to face support group here for wg let alone resources to help us. My cousin has ms and we were talking there every were. And we were talking about our dieses systems and all its weird ok it's not but u go up to anyone and say I have ms and even if they don't know about it much or at all they know it's bad and go o man in sorry. But u say wg and you get the deer caught in a head light look. ,and she tells me I may have ms and fm but at least I don't have what you have..??? So it makes me wonder alot about it all. And omg my not to sweet niece sent me a horrible text. What it came down to is she says I deserve to die alone. OMG I can't Beale e it.. WTH...o well she's only 18 hope she grows put of it.. Lets say a prayer.What I am saying: These people seem to be upset that you are not carrying their baggage, and the fact that you have medical issues seems to be a direct insult to them. Don't know of an easy way out of this. In all cases, though, the solution would be be for you to meet them 60 percent of the way. Frankly, I do not suggest this.

Al

[alexciasmom]

I got it I got it. Don't yell at me..lol. Your preaching to the bible of my in laws.

[pberggren1]

By the sounds of it you are way more responsible and mature than your whole family combined. Try not to let your niece get you down. If fact, I've had a few family and friends tell me the same thing, like: take your damn disease and go die somewhere. It hurts at the time for sure.

[Dryhill]

Whenever I get cut-up or abuse from another motorist, I offer up a taxi drivers prayer "Oh Lord, please let their gear box pack up, or perhaps their head gasket". As you can see I am very tolerant and forgiving, but it does make me feel a tiny bit better. Perhaps when we weggies are confronted by nasty relatives we should have a weggy prayer something along the line of "Oh Lord, please let them suffer this for a week/fortnight/month".

Ok so I am not very nice but unfortunately a lot opf people are not very nice. When you see how family members can react to their so called loved ones, it is no surprise that we get situations like Rwanda and the Twin Towers plus people like Pol Pot and Hitler. :crying:

Jim

[Sangye]

Please never, ever ever wish suffering on another being. Everything we do comes right back to us eventually. And even if it didn't, how can it make us happy to think that someone else is suffering?

[alexciasmom]

I just think it's the whole.. If you can only live in my shoes send. I can understand what that's like but I am not as nice as him. I don't want them to feel as bad as i do. I want them to suffer long and slow.. Like walking down the street fall in a pile of barbed wire then get drenched by lemon juice.. And then when that's over they get... No I'm just kidding. Its nice sometime to think about but not be to serious about..

[alexciasmom]

So at hosp getting ritoxin and h get 4 units down and I get hives every were... I looks like well I got hives more benadril fot me

[Sangye]

I just think it's the whole.. If you can only live in my shoes send. I can understand what that's like but I am not as nice as him. I don't want them to feel as bad as i do. I want them to suffer long and slow.. Like walking down the street fall in a pile of barbed wire then get drenched by lemon juice.. And then when that's over they get... No I'm just kidding. Its nice sometime to think about but not be to serious about..
"Nice" to think about torturing someone???? Then don't be surprised when people don't take your pain seriously.

[alexciasmom]

Sangye I hope I did not upset you I was just kidding. I deal with every thing with laughing and goofing around. Your right its not nice to think mean. But you have to admit. After your whole family rips your heart out and runs it in blender you some times have keen thoughts. I can't help it it just happens sometimes. But I would never tell it out loud to them and hurt them on purpose.

[pberggren1]

We are all tempted with thoughts like this but it does not mean we have to entertain them. When a thought like this comes along we just shove it out.

[Dryhill]

Sorry Sangye and Phil, when I get hurt by someone I am afraid I do tend to wish that person could suffer a little bit, but I would never voice my feelings. The stupid thing is, if they were to suffer I would be one of the first to try and help them. In future I will try and think what you two would do, but cannot promise to be perfect.

Jim

[Sangye]

It is natural for us to think that others should suffer as we do, but it has to be uprooted from our minds. I mean, it's also natural to kill others but we train ourselves not to act on that impulse. Everything we do comes back around. We who are suffering so much have got to be the most determined to uproot thoughts of harming others. We know what suffering is like and have to do everything we can to alleviate it for others or we will suffer even more.

[pberggren1]

Everything in life is about choices. We can choose to be nice or not nice. The more we practice to be nice the easier it gets.

[annekat]

When I am "not nice" to someone, or wish them harm, it leaves me with a sick feeling inside, a feeling of regret and dislike of myself. It feels so much better to have responded to someone with grace and equanimity, regardless of what a jerk they have been, knowing that they may learn from that and what goes around comes around. On the other hand, it is often appropriate to be honest about one's reaction to something hurtful that someone has said or done, yet without causing additional hurt. It is quite a balancing act and one that most of us probably struggle with. It is easy to say how we should think and act but not always easy to control our behavior and thoughts in everyday life. I like Phil's idea that it just takes practice.

[alexciasmom]

So today's hubbys b'day. And at 9 am I get Started on.then a total of three reactions and 11 1/2 hrs later I get home. So tired. My first set of 4no reation. This time I got hot ichy hives all over body under hair even eyes were red and ichy my bp uped my pulse and o2 it burned and skin was hot. So they would stop give IV benadrill when rash gone we restart at a slower speed uug I just know the last half of day it was 100 ml an hr..so sums it up to three relations. Two benadrill night before two before IV and three bags and two benadrill before bed and u still can have a reaction. Doc says hubby has st say up and check to see if im breathing or breathing funny or rash back if so call 911 if just rash got to er.i forgot how it feels during a treatment. It feels like soda bubbles in my gains and they keep pop popping..

[alexciasmom]

I do try hard to be nice. But if you new my fam you would understand how hard
In one day of living with them i dot care who you are heck thay would have the pope having plans to get rid if them. O better yet he would tic them of and they would plan it so that he would drive them nuts and they would do to him he would kick them out and they would make it out to be all his fault and not there's and he owes everything to him and they owe him nothing. Bit the truth would be he let the get away with everything and lay down to be walked on and say thank you to them. And he got tired off it and grows a back bone kicks them out of it and the fact they never payed for all they were assigned to do. Now every one hates him.. There that bad..

[pberggren1]

I'm so sorry dear. But that is a very good analogy of how things really are in the world today.

I hope that you don't have that bubbles feeling in your veins right now.

[alexciasmom]

O I will have that feeling till im off the treatment. But I felt like crap yesterday but man I feel good today yeah!!!!!

[Lightwarrior]

When I am "not nice" to someone, or wish them harm, it leaves me with a sick feeling inside, a feeling of regret and dislike of myself. It feels so much better to have responded to someone with grace and equanimity, regardless of what a jerk they have been, knowing that they may learn from that and what goes around comes around. On the other hand, it is often appropriate to be honest about one's reaction to something hurtful that someone has said or done, yet without causing additional hurt. It is quite a balancing act and one that most of us probably struggle with. It is easy to say how we should think and act but not always easy to control our behavior and thoughts in everyday life. I like Phil's idea that it just takes practice.

This reminds me of a story I heard once. There was an old man walking along a river and he noticed a scorpion hanging at the end of the branch, very nearly falling into the river, so he crawled out on the branch and reached his hand out. The scorpion stung him, soon a much younger man was walking by and stopped to watch as the older man got stung twice more. Pretty soon he had all he could take and he said to the older man "Old man, are you stupid? don't you know that it is a scorpions nature to sting?" the older man smiled and said ""Yes, my son I do know that, but did you know that it is my nature to save??"

I think of that story when someone hurts me or is insensitive and I am reminded that regardless of how other people behave towards me I must remain true to who I am, even if it means I get stung again.

[Sangye]

What a beautiful story, Light.

I loved your post as well, Anne.

[Al]

It is natural for us to think that others should suffer as we do, but it has to be uprooted from our minds. I mean, it's also natural to kill others but we train ourselves not to act on that impulse. Everything we do comes back around. We who are suffering so much have got to be the most determined to uproot thoughts of harming others. We know what suffering is like and have to do everything we can to alleviate it for others or we will suffer even more.Everyone has at least a touch of Schadenfreude (the pleasure derived from the misfortunes of others), I think. I once heard the Dalai Lama speak. He said as much. The trick, he said, is in overcoming them and acting in a different direction. (He also alluded to other passions denied those of his calling, with the same conclusion.)

Al

[annekat]

Everyone has at least a touch of Schadenfreude (the pleasure derived from the misfortunes of others), I think. I once heard the Dalai Lama speak. He said as much. The trick, he said, is in overcoming them and acting in a different direction. (He also alluded to other passions denied those of his calling, with the same conclusion.)

Al I like that word, Schadenfreude, it sounds just like what it means. I remember as a young child smiling when some other little kid fell and got hurt or got scolded by a teacher. It must have been a sheepish smile, because I never knew why I did it. I know other kids did it, too. So maybe there is some misguided instinct causing it. I do not enjoy the misfortunes of others now that I'm an adult, but some people thrive on them. And why do people enjoy seeing boxers beat each other bloody in the ring, or cockfighting and dog fighting, or gawking at accidents on the road? If the Dalai Lama acknowledges this tendency in humans, then it must be deep-seated. But like he says, we are human, we have a choice and can overcome it and act in the opposite way.

[alexciasmom]

Well my bp has been so high the last 4 month they have talked about raising my meds. But the last three dr visets well since the family moved. Its been low. Do ya think there's something to that?

[annekat]

Well my bp has been so high the last 4 month they have talked about raising my meds. But the last three dr visets well since the family moved. Its been low. Do ya think there's something to that? Without being any sort of expert on the subject, I would say YES, I think there is something to that!:thumbup:

[alexciasmom]

I have lost half my hair thow. The dr says it's from rtuxin. So many I need to start taking donations.

[Fran]

Glad to hear your b/p results are better.

So sorry you are losing some of your hair - hope it grows back in soon !

Fran

[Dirty Don]

I have lost half my hair thow. The dr says it's from rtuxin. So many I need to start taking donations.

I'm on mtx, so I don't know if side effects are similar, but my doc increased my folic acid dose and the hair has come back in quite nicely, in fact, wavy...I've never had a curly hair on my head in my life! LOL

[annekat]

I'm on mtx, so I don't know if side effects are similar, but my doc increased my folic acid dose and the hair has come back in quite nicely, in fact, wavy...I've never had a curly hair on my head in my life! LOL Interesting. I've lost quite a bit of hair while on CTX and am now on MTX. I'll ask my doc if it's OK to take a bit more folic acid. My hair is wavy to begin with, but I wonder if it will grow back straight or wavier? I know a cancer patient who lost all her hair while on chemo and hers is growing back grey where it wasn't before, and a bit wavier. Her son also had chemo and I think she said his grew back reddish and curly, where it was straight and brown.

[Fran]

I have been on methotrexate for years (plus 5mg folic 5 x a week) and have never lost my hair, it has just become very fine, but lots of it. Have read that people get curls and have longed for this, but strangely, although I am getting on a bit, I am still dark haired - no grey yet !

Fran

[annekat]

I have been on methotrexate for years (plus 5mg folic 5 x a week) and have never lost my hair, it has just become very fine, but lots of it. Have read that people get curls and have longed for this, but strangely, although I am getting on a bit, I am still dark haired - no grey yet !

Fran Me, too, turning 60 this year and just a hint of grey, barely noticeable. Maybe that high dose of folic has prevented you from losing any of yours!

[Sangye]

Grey hair can be the result of a zinc deficiency, particularly if it's "prematurely" grey.

[Dirty Don]

Grey hair can be the result of a zinc deficiency, particularly if it's "prematurely" grey.

Hmmm, the question is: what/when is premature!! LOL!

[Sangye]

LOL I had a few grey hairs in my twenties. I took a zinc supplement and they went away quite quickly.

[alexciasmom]

I started tinting my hair at 16. So who knows when mine did.

[Lightwarrior]

LOL I had a few grey hairs in my twenties. I took a zinc supplement and they went away quite quickly.

My hair also started turning salt and pepper in my twenties and I was completely gray by 35. Actually it is white and silver, kinda a cool color so I never dyed it or tried to get rid of it.

[alexciasmom]

Hi all its been a while. Let's see what's been going on. My health is good. Blood and urine test good. Off all meds but Methotrexate, cymbalta, shynthroyid. I have been going to gym and studying Martial arts. Kenpo and Thi-Chi Chi. I am saperated from the husband and heading for devorse. It's a good thing. Lex is wonderful she's reads at a 9th grade level and she's in 4th grade. Edmonds good. We got a weenie dog. We named him frank and weenie. Not much else. Talk at ya later. Oxox

[annekat]

Hi all its been a while. Let's see what's been going on. My health is good. Blood and urine test good. Off all meds but Methotrexate, cymbalta, shynthroyid. I have been going to gym and studying Martial arts. Kenpo and Thi-Chi Chi. I am saperated from the husband and heading for devorse. It's a good thing. Lex is wonderful she's reads at a 9th grade level and she's in 4th grade. Edmonds good. We got a weenie dog. We named him frank and weenie. Not much else. Talk at ya later. Oxox Good to hear from you DeDe. Going through some changes. Are you still in Salt Lake City and do you go to the vasculitis clinic at the university there? It sound like you are doing OK with your Wegs, though. I hope it continues. Fill us in on any more tidbits as they occur to you. Lexie looks great. And Martial Arts, that's pretty cool.

[alexciasmom]

I am still in salt lake. My rheumatologist is Dr. Stromquest he was on state at the utah arthritis clinic. But he moved to the vasculites clinic in the u of u. I take Ti Chi I am in a gold belt. I also do Kenpo. They are both really good for arthritis. In kenpo I am a yellow belt. I test this weekend for my orange belt. When I pratice I don't think about anything but what I'm doing. So that's good for the brain. I got myself a punching bag stand with a speed bag. Wow it's work. I am sore after but it's a different sore. Like a good sore. I recommend martial arts to everyone. Really good for your heath. I'm not as depressed. And not as tired all day. I get up and spend 45 min mentaly preparing to fight the body issues. So I can pratice. Then I feel better for the rest of the day. Some days it helps better than others. But it helps.

[annekat]

That sounds great. I took Tai Chi a long time ago, but nothing like what you are doing. I need something for bodywork, and to improve my state of mind, so good to know about the positive effect of these on you.

[Alysia]

You vent any time you want to. That is why we are here. If you feel the need to vent and let it out you do so. It is not healthy to keep this stuff in. And by the way, your family needs to grow up and treat you a lot better and respect you more.

Thanks for the update Dede and thanks for writing on this beautiful thread. So many wonderful posts in it. Feels like dr. Phil is still right here to support you.
Thanks for sharing about martial arts. Its amazing how helpful it is, to the body and the soul.
Keep on writing. Its nice to see you here as well.

[alexciasmom]

Hi my loves. I am so happy and Proud of myself. On sat I had a kenpo test. Three hrs long. Not only did I pass and rank to orange belt. But I Doubled Ranked to a Purple Belt Rank!!!!!!! Thanks all. Best wishes to you.2378

[annekat]

Way to go, DeDe! Keep up the good work and you'll be a black belt before you know it. Big congrats!

[Alysia]

Great work :hug3: Thank for sharing with us :hug1: