04-08-2005, 09:39 PM
I think, if we are posting our menus, then the threads will move quickly.
Dieting with Obstacles - Friends with RA and OA #16
View Full Version : Friends with RA and OA #16
04-08-2005, 09:39 PM
I think, if we are posting our menus, then the threads will move quickly.
04-09-2005, 01:15 PM
Wifie- Start slow. You can exercise in 10 min.increments. It will be just as good. Increase your time daily... Good for you on the 5 lb. loss.
Happy. I bet you have a heel spur.. Hope it gets better soon. I have had that and it is painful.
Hello all. Back later..Joanne
04-09-2005, 01:41 PM
Wifie, although I don't have RA, I have chronic pain with Osteoarthritis and Fibromyalgia. I am also so darn limited to what I can do. 8 years ago I could hardly walk, but by trying different things, other than medical, I have improved greatly, although I still am very limited. It is the pain that is controlled and I no longer have to take pain meds daily. However, a couple of years ago, I was diagnosed with Atrial Fibrillation and put on Sotalol, a BetaBlocker. That slows EVERYTHING down, and it seems impossible to drop even a pound. The fatigue is the worst for me. I can deal with the pain, but not so much the darn fatigue, which is a trademark of Fibromyalgia.
Congrats on your weightloss. We will all just keep plugging along here.
I will be gone from today until probably Wednesday or Thursday. I hope to see some menus posted here when I get back.
Happy Lifestyle change ladies.
04-09-2005, 08:15 PM
I walked to the art show here in town. all total more than 2 1/2 miles. It was ok just. Too many people there to really enjoy what was there. What I say was so high priced I couldn't believe it..
My menu for today was:
breakfast-tortilla high fiber no fat,egg sub.1/4 cup,1 slice veggie cheese(soy) 2 slice 98% f/f ham,1/2 sm. banana
lunch- 1/2 cup cottage cheese F/F,2 slice turkey breast .1 slice ham both 98% F/F,2 lettuce leaves and sm. tomato
Dinner- Pork loin chop, Egg sub with mushrooms and Green beans.
I weakened this pm and had a few low fat chips..I have to watch that!!
I hope you girls did better than me..Joanne
04-09-2005, 11:51 PM
To our thread, Wifie! Sorry you've had a rough time...hope all is going well with you & husband, now. ((hugs)) I also have RA, along with OA & a few more things. I take Methotrexate shots once a week, & Remicade treatments every 5-6 weeks. I know the feeling of wanting to walk as I used to. I would go & walk around the school track with friends.........really enjoyed it. Now, I dread going to town to buy groceries. :(
I can't stay......been so busy.......
Breakfast: Coffee (decaf)
Lunch: Atkins bar 1/2.........strawberry smoothie from juicer.....mmm good!
Supper: Went out with DH & friends....salad, mushrooms, & water
Lunch: Atkins bar 1/2....strawberries with whipped topping (sugar free)
Supper: Small piece of chicken, one tablespoon green beans, tomato juice
NO SUGAR FOR 6 DAYS!!!! DOUGHNUTS STILL UNOPENED!!!!
Did you get my pm, Happy Canuk? If so, don't worry about it, Connie (at the tv station) gave me a CD Burner! Now....to install it. :D
Hope all feel well...............
04-10-2005, 12:22 PM
Thank you for your kind welcome. Is everyone following a basic plan? I'm used to the regular Atkins diet where you can eat all you want as long as it is protien. It seems your all watching your portions as well.
I have added the low carb bread for breakfast I have 2 slices with crunchy peanut butter. For lunch I usually have tuna or chicken I never notice the portions I also add mellon or strawberries. For dinner I have meat and salad. for desert I have berries. Ok have to go finish up our taxes. ugh! Wifie
04-10-2005, 12:25 PM
I blew it big time yesterday. The kids were tired and acting up, so I got overly stressed, and overindulged on everything.
Breakfast: cocoa puffs, 2 % milk
Lunch: BK double-cheese burger-NO bun
Dinner: 2 BBQ chicken legs
1/2 cup rice a roni
diet vanilla pepsi
2 slices cheese
DEFINITELY NOT WHAT I WAS AIMING FOR. I NEED TO RESTOCK THE FRIDGE AND QUIT THIS AWFUL WAY OF EATING.
My mom wants to try the SB diet so maybe if we can go through the phases together, we can both conquer this.
Have a great day! I didn't make it to church. I was too tired. I helped my sister clean until 10 p.m., then came home and watched The Day After Tomorrow with my husband and his former boss's family. Didn't get to bed until after midnight and I was just to wiped out to move. Today is going to be a busy one trying to get the yard cleaned up for the summer. And maybe get the shed put up and some painting done.
Check back later. Love you all.
04-11-2005, 12:05 AM
Had a beautiful weekend, weatherwise. Wifie....we're not on the same diets. Just posting what we eat daily, to help us stay on track. Chrily....don't worry about it...start over tomorrow.
Breakfast: Coffee, breakfast bar
Lunch: Hot dog (DH worked today, & wasn't anything else here!)
Supper: Banana, Strawberries & sugar-free whip cream
Have a goot Monday, everyone..........
04-11-2005, 12:50 PM
Sunday for breakfast I had peanut butter on low carb bread with a drop of blueberrie preserves. Lunch I had mellon and almonds
Dinner I had a hamberger no bun with a salad. Mellon and nuts. coffee
Monday peanut butter sandwich on low carb bread and coffee for breakfast
lunch salad with mozzorella cheese
I woke up in alot of pain today . It's almost 12pm and I have taken my painkillers early. Everyone in my house has a cold and I seem to be coming down with it as well. This in not good because my RA really acts up when I'm sick. I feel so tired. Oh well I want to make sure I don't cheat on my diet since I'm feeling so hungry and miserable. Oh well at least I feel better looking at all the success stories. until next time Wife
04-11-2005, 11:44 PM
I refuse to post that I had yogurt and three cookies for breakfast!!!
04-12-2005, 12:13 AM
It's late & I'm tired. Hope all had a good day. I didn't have sugar, but sure didn't try to stay on any weight loss diet. I was hungry all day!!!
Breakfast: Coffee, diet bar
Lunch: Grilled cheese sandwich, water
Supper: Chicken finger, about 4 fries, water
Snack: About a fourth of BBQ sandwich (our cooking show at the station), water.
Have a good evening.
04-12-2005, 09:02 PM
The chips are still calling me.. One good thing they are lite..
Yesterday I walked almost 3 1/2 miles. Today I walked 3 miles..
Monday- Breakfast,1/3 c eggbeaters,2 slices 98% FF ham ,1 oz cheese, 1/2 ban.
Lunch- Yogart FF and 1 c kashi cereal
Dinner-Chicken strips ,brown rice and veggies
Tuesday- Breakfast- Kashi 1 cup and strawberries 1 c ,soy milk 1/2 c
Lunch Veggie burger (no bread)Lettuce leaves tom and 1 slice FF cheese, Cantalope
Dinner-6 oz salmon, eggbeaters with one slice of FF cheese.
Now if I had just stopped there. My hubby asked for a banna cake...I ate a small piece.I seem to sabatoge myself..
Love you all..Joanne
04-12-2005, 10:57 PM
Well.....suppose I gotta change the name of this thread to "Friends with RA and OA, Lupus, and Fibro"http://img.photobucket.com/albums/v185/Angel-Lover/4_9_7.gifThat's the news I got today! I now have Lupus & Fibromyalgia to go with my RA & OA! I'm so depressed tonight. I don't think I can take the Remicade with Lupus, so don't know what to expect when I go for my treatment May 2nd. I don't want to take steroids. My back is in too bad of a condition with OA to bare anymore weight. I guess I wait & see.
Joanne...sounds to me like you're doing pretty well. Remember, you're maintaining, so you're allowed once in awhile. At least, I had lost another couple of lbs. Suppose I'll put the tracker back up, if I'm not put on steroids. Dr was happy I had quit the sugar! It's been 8 days, now!http://img.photobucket.com/albums/v185/Angel-Lover/clapsmiley.gif
Ageoldie...I don't blame you for not posting that yogurt & 3 cookies!
Wifie....I'm sorry you're feeling so bad. I hope you're doing better now. ((hugs))
Happy Canuk...I'm worried about you. Are you sick, again?? You've been on my mind, today...because we haven't heard from you for a couple of days. Please let us know how you're doing.http://img.photobucket.com/albums/v185/Angel-Lover/Number%208/loveyouthismuch.gif
Hi Chrily....take care of yourself!http://img.photobucket.com/albums/v185/Angel-Lover/Number%20three/throwingxs.gif
Breakfast: Coffee, 3 sugar-free cookies
Lunch: Chicken Finger, glass of water
Supper: Cup of beef stew, tomato juice
04-13-2005, 12:49 PM
Its too hard for me to figure out what I'm eating all day long and post before I eat it sooo....
cereal with 1% milk
lunch (gulp... :o )
quarter pounder (no bun)
hard shell taco
YIKES! Not good.
04-13-2005, 01:03 PM
OKay i've showed you my depressing menu from yesterday. I knew I was going to my sister's...around lunchtime and I knew in my mind that I'd end up eating bad if I didn't take my own food with me. And that is exactly what I let happen. Therefore my new plan of attack is going to be having a box of healthy snacks in the van for those so-called "unexpected" visits to peoples houses. I am going to make sure I have something to take with me for a lunch and carry a couple extra bottles of water to drink. I've identified a problem and that is my fix for it.
Charlotte-OH my gosh, hon! I'm sorry to hear that you have lupus and fibro. My grandmother had lupus. I don't remember much about it because I was littler. I know that its one of my fears though. I've read so many articiles that say if you have one auto-immune disease, you are more likely to pick up another. My mom is a good example of that one. She started out with sarcoidosis and now she has RA too. I wish I could take the worry away from you and all those bad sad feelings.
Hi Joanne-The sweets have called me a couple times too. My stepmom made me a cheesecake for my birthday. Needless to say, it made it to my mouth. Now its back to good behavior.
Hi Wifey-Did you get any news from your doctor? I'm reliving my sleepless nights as I read through your post. I am sending you a hug or two. Those nights are the worst. I had quite a few where I've been up all night sitting up in a chair nursing my arms or hand and crying all night cuz it hurt so bad. Rest when you can. I know the fatigue can be overwhelming too. Honest...it does get better. You've just got to hang in there. :)
Hi Chanuk...and Hi Barb! Hope you two are doing okay. Don't worry about the cookies for breakfast. Let it go and start fresh. You're doing great! :)
Gotta go get the laundry folded. Not my favorite job in the world. But has to be done before I head off to the doc. I have these little teeny tiny bumps all over my upper arms and on my back and they are itching like crazy. They have been for a couple months now. My Rheumatologist says it looks like folliculitis. So I'm taking a trip to the dermatologist today and see what he can do for me. I'll let you know how it goes.
04-13-2005, 07:13 PM
Back from the dermatologist. He says I have keratosis pilaris. Its a genetic follicular condition. I'm going to thank my mom again for all these weird things that happen. Anyhow I get to use a really pricey skin lotion ($33/bottle). The pharmacy had to order it so it'll be in tomorrow. As long as this itching stops and these bumps aren't so bad. He says it'll never go away totally but I can get some relief with treatment. If this lotion doesn't work...I get to go back. I read up on it and sometimes they have to use antibiotics too. Oh well....
Back to the laundry monsters...
04-13-2005, 08:35 PM
Angel- My sister has had lupas now in remission.. She went to a support group meetings for years.. Maybe you can find one.It seems like a lot is piling up on your plate..Sometimes support groups can help,but, then again if there are a bunch of whinners there they can do more harm than good. Why don't you consult with the medical group you go to and have them advise you.
Chrily- I hope the medication for your skin helps..I have little bumps on my face that get sore sometimes. I use peroxide on them. I also use Clinic's products. They are pure and have no perfumes in them..Their cleansing routine is one of the best that I have found. I was at their counter today. It is Bonus week at Dillards here in Fl.
Today...Breakfast- Kashi cereal 1c, 1/2 banana,strawberries, 1/2 c skim milk
Lunch- SUBWAYS grilled chicken salad, lemon juice for dressing
Dinner- Salad mixed veggies, chicken, red wine vinager and olive oil dressing
Ok girls, don't concentrate too hard on what you may eat out..Make up your mind that there are certain things you are not going to eat. So what if someone doesn't like it!!You are taking care of yourself..Bye till tomorrow.. Have a good day...Joanne
04-14-2005, 01:41 PM
Rheumatoid Arthritis Drugs Tied to Skin Problems ProHealthNetwork.com
Study Links Humira, Remicade, and Enbrel to Skin Conditions
By Miranda Hitti
WebMD Medical News
Reviewed By Brunilda Nazario, MD on Monday, April 04, 2005
April 4, 2005 -- Dutch researchers have linked a group of rheumatoid arthritis drugs to skin problems. Humira (adalimumab), Remicade (infliximab), and Enbrel (etanercept) are mentioned in the study, which appears in the journal Arthritis Research and Therapy.
All of those medications are biologic treatments for rheumatoid arthritis (RA). They are a new type of treatment approach that inhibits TNF, a chemical made by the body to induce inflammation. These chemical substances lead to joint inflammation seen in RA.
The study "shows that dermatological conditions are a significant and clinically important problem in RA patients receiving TNF-alpha-blocking therapy," write the researchers.
Out of 289 RA patients taking biologic agents, 72 (25%) consulted a dermatologist about skin problems over an average of two years. In comparison, in a group of RA patients who had never received these drugs, 37 (13%) consulted a dermatologist. The comparison group tended to have less severe cases of RA, say the researchers.
Most Common Problems
There were a total of 128 skin problems among the 72 patients taking biologic agents who had consulted a dermatologist. Their most common conditions were skin infections (33 cases), eczema (20 cases), and drug-related skin eruptions (15 cases). None required hospitalization but seven patients decided to stop taking the drugs because of skin problems.
The number of skin problems reported during or after treatment was 56 for Humira, 49 for Remicade, and 16 for Enbrel, write the researchers, who included Marcel Flendrie of Radboud University Njimegen Medical Centre in the Netherlands. Most of the skin eruptions occurred in the first five months of treatment with the biologic agents and were caused by all of the drugs, the researchers report. Reports of skin problems had surfaced in study trials of the drugs but this is the first large study that tracked problems as they unfolded, say Flendrie and colleagues.
Who Took What Drugs
The group included 70 patients who were taking more than one TNF blocker. Eight patients took more than two anti-TNF drugs, say researchers. Humira was taken by 108 patients, Remicade by 167, and Enbrel by 78 people.
"Based on the information in the article, we really can't address [the study]," says Candace Steele, director of global public relations for Wyeth Pharmaeuticals, which markets Enbrel in the U.S. together with the drug company Amgen.
"I can tell you that we have seen dermatological effects with some patients who've used Enbrel," says Steele. "Essentially, if a physician were to contact us about dermatological effects, we have standard information [stating that] skin rash has been described in clinical trials, postmarketing experience, and literature reports." Patients should report any skin conditions to their doctors, she adds.
"Injection site reaction is a possible side effect that's listed in our label. In fact, it's in the label of all TNF inhibitors," says Jim Bozikis, manager of pharmaceutical public affairs for Abbott Laboratories, which makes Humira.
"Our experience with RA patients and Humira is that when side effects do occur, they're so mild that patients choose to continue therapy because the benefits greatly outweigh any side effects," he says. "In general, with anti-TNF therapy, patients are more susceptible to infection and the key is for patients to work closely with their physicians and carefully monitor their progress," says Bozikis.
Source: WebMD (online at www.my.webmd.com)
ARTICLE SOURCES: Flendrie, M. Arthritis Research and Therapy, April 3, 2005. News release, BioMed Central. Candace Steele, director, global public relations, Wyeth Pharmaceuticals. Jim Bozikis, manager, pharmaceutical public affairs, Abbott Laboratories.
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04-14-2005, 01:47 PM
Hi. Back from helping my aunt pack. I did get to visit with two of my GF while I was away as well.
Didn't do too badly with eating at all. Stayed on my diet. Just so frustrating because I have only lost 1/2 pound. This makes me crazy, but I guess if I stick with it, it will eventually LEAVE - I HOPE!!! anyway, feel a lot less sore without sugar.
Will be back later to post my menu for the day.
No Barb, we don't want you to post the yogurt and three cookies you had for breakfast :lol:
Chris - glad you found out what the skin thing was.
Joanne - you are a dynamo!!
Angel - I'm sorry about the diagnoses of Lupus and FM. Just more of the same darn pain, although I think Lupus carries some other stuff with it as well. The thing with FM is the fatigue for me, more than the pain. I can deal with that, but not the darn fatigue.
Will be back later.
04-14-2005, 08:22 PM
Good to hear from you Happy Canuk.
I guess I forgot you were going to go help your aunt pack. I was getting concerned about you.
Thanks for the info. My Dr talked with me about the possible dangers & side effects of Remicade before I started on it. I just have to decide which is worse, I suppose. So far, after almost 3 yrs of Remicade, I haven't had any side effects. The Methotrexate is a different story, though. I know I need it, but I hate it, & wish I could get off of it, because of that. The Dr says he's afraid for me to take the Remicade without it, though, because I'm so sensitive. :dizzy:
I know what you mean about the fatigue. That's why I knew something else was going on. I've had problems with it before, but, the last few months I have to force myself out of bed, out of a chair, or to do anything at all! I'm just fatigued to the point of not even knowing how to explain it, especially to my family. :( Sometimes I think I should just go away somewhere & live alone, so I won't be a bother to anyone. I suppose that's just part of the depression, or whatever, that goes along with it. I'm mostly sick & tired of being sick & tired!
Joanne...support groups sound nice...but, I don't have time, or the strength, to be truthful. I'm getting afraid that the fatigue will start being a problem for me to go to the station. (& I love it so well) As soon as I can, I have to get back home, while I have the strength. I have a feeling there's no meds for that. Being off the sugar has helped with a few things, though. I seem to be feeling better in other ways, & not hurting so much. Yes, I know Lupus isn't supppose to be what it use to be, but still dangerous. I had a friend at the station that had Lupus, & died a couple of years ago (younger than I am). Her lungs crystalized. Death isn't caused by RA or Lupus, but by complications caused from them.
Chrily...I'm sorry about your skin condition. You have enough to contend with, without more going on. I think about you a lot. The Methotrexate breaks me out in a rash & itches, so I know a little what you're talking about, but sure your situation is quite a bit worse. Don't worry about me, like I said it's mostly the fatigue.
Hello Wifie & ageoldie...hope you're feeling well today.
Breakfast: Coffee, 3 sugar-free cookies
Lunch: 1 Lean Pocket & Diet Sprite
Snack: Strawberries & sugar-free whip cream
Supper: A spoon of white beans, very small piece of steak, water
04-15-2005, 01:32 AM
Evening...almost bedtime for me really. I am so tired. I'll post my menu tomorrow. I just don't have enough energy to do it tonight.
Charlotte-Are you feeling any better? I was going to ask too-How do they test for fibromyalgia? I was curious after reading your post about being extremely fatigued. I have been that way for a few weeks now. I'm so tired, its hard to wake me up in the morning. I am just exhausted and feeling generally *blah* until around 2 in the afternoon. I don't feel like doing anything. My husband is starting to complain about my lack of housekeeping skills lately. Its like I am physically tired, as well as mentally. My body feels heavy and I swear if I laid my head down sometimes...I'd be asleep in less than a minute. I don't know if you can relate or not but...
Hi to the rest of you. I'm going to bed. Morning is coming way too early. I did my first application of my cream tonight. I don't itch as bad...guess that's something. See you all in the morning.
04-15-2005, 01:20 PM
Have a question for you guys, I don't think anyone here has had gastric bypass, but do you know of anyone with RA who has?
I'm actually considering this (well, more than considering, I"ve made the appointment with the surgeon). I was wondering what kind of hurdles I was going to have to jump through with the rheumatologist.
04-15-2005, 01:24 PM
Dear Angle lover, thanks for asking. I wish I could say I'm doing great but the truth is I have been in alot of pain lately. my feet and hands are hurting so much these days I can hardly stand let alone walk. MY dieting is becoming a struggle and it's only a week and 5 days. I guess I'm so miserable with my pain that everything seems like a big hurdle. I know what you mean about being sick and tired of being sick and tired, also living alone and not causing anyone any trouble. With me my children and Husband have become acustomed to hearing me complain about my pain that sometimes I think they just don't realize how bad off I truly am. Oh well enough about me.
I am sorry you are having difficulty with the meds. I know how hard it is not to let the depression get the best of you. I hope things work out for you and you have a great weekend. love Wifie
04-15-2005, 02:36 PM
Chris, the only test for Fibromyalgia is a pressure test on 18 spots on the body. I tested for 17 out of 18. They do have to rule out certain other diseases, however. So you may be asked to do a 24 hours urine test, among a few others. That is how they diagnose FM right now.
The fatigue - well how to explain it. It isn't just being tired. It is a body in complete exhaustion after sleeping a whole night. It feels heavy and doesn't want to move. This is when I hit the carbs - sweet ones. It doesn't seem like I have any control over it. My body is craving sugar for energy. It sometimes works to eat sugar. The funny thing is, I can sit and eat TWO chocolate bars, my blood sugar goes up, but it NEVER falls back down. That is the only way for me to get over the fatigue. Fruit doesn't work, and Vitamin B doesn't work.
I hope you were able to get some much needed rest.
Wifey - I hope you feel better as the day goes on. I don't have any experiences with RA, thank goodness. I have OA and FM and that is enough to contend with.
Well everybody have a good day.
04-15-2005, 02:40 PM
Just putting this here for those that HAVEN"T read it. Give it to your family and let them understand it from this point of view.
An excellent story for anyone with chronic illness. This is about Lupus but certainly tells the story for all people that have chronic pain.
The Spoon Theory
My best friend Jenni and I were in the diner talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me this time, with a kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. Jenni had seen me cry in pain, what else was there to know? I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I donít try to explain this, how could I ever expect her to understand. If I canít explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; **** I grabbed spoons off of the other tables. I looked at her in the eyes and said ďJenni, here you go, you have LupusĒ. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands. I explained that the difference in being sick and being healthy is having to make choices, or to consciously think about things when the rest of the world doesnít have to. The healthy have the luxury of choice, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a ďlossĒ of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didnít understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many ďspoonsĒ you are starting with. It doesnít guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. Iíve wanted more "spoons" for years and havenít found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You donít just get up. You have to crack open your eyes, and then realize you are late. You didnít sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you donít, you can't take your medicine, and if you donít take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasnít even gotten dressed yet. Showering cost her a spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didnít want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didnít even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your ďspoonsĒ are gone, they are gone. Sometimes you can borrow against tomorrowís "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didnít want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldnít have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didnít even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you canít do it all.
I rarely see Jenni emotional, so when I saw her upset I knew maybe I was getting through to her. I didnít want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly ďChristine, How do you do it? Do you really do this everyday?Ē I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I canít forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, ďJenni, I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be preparedĒ
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said ďJenni, donít worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I donít have room for wasted time, or wasted ďspoonsĒ and I chose to spend this time with you.Ē
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isnít just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they donít take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".
© 2003 by Butyoudontlooksick.com
04-15-2005, 04:20 PM
Kim, I'm not sure they'd even let someone with RA have gastric bypass surgery. I'm not sure but my SIL had the bypass surgery done and she got an infection and she had breathing problems from the anesthesia. She was in ICU for awhile. Don't mean to scare you. It's a very risky surgery.
Joanne, That's exactly how I feel. Totally and completely exhausted after a full nights sleep. I'm sleeping so solid right now, I don't even wake up to go to the bathroom like I usually do. But when I get up in the morning (only because I have to take care of my little girls), I feel like I haven't slept in days and my whole body is extremely heavy feeling. ANd I have been craving the carbs like crazy too. I don't have any aching pains though...so thats good.
Okay...I'll address the rest of you later. My sisters' are here with all their children. I'll catch up with you in a bit.
04-16-2005, 11:19 PM
Chrily....It's hard to explain Fibromyalgia.......for me it's mostly FATIGUE, but, then, RA & Lupus causes that, also. Need to separate the word fatigue from tired, also. I feel NO energy. This is all the time. But, there are times, it's like I've got nothing but water in me....no blood. I can't sit up, stand up, or do anything. I've been dressed for church before & going out the door. Fatigue would hit me, & I'd have to sit down. Finally would decide I wasn't able to go & DH would go on alone. I went into town today feeling fairly well. I was going to check on my mother & get a few groceries. Decided to stop & see my sister at the shop she works at. I got so fatigued, I had to go home without groceries, or checking on my mother....barely able to drive. It's hard to plan anything. Also, the pain. I will hurt in different places at different times....very strange. Happy Canuk told you how they check for FM. There's not a blood test for it. It's possible you have it, but also, the way you have to take care of your children & the house & DH with RA could also give you the fatigue you're talking about. I've had RA for 3 yrs now, & have gone through that since I was first diagnosed.
I have spells of insomnia, then spells of wanting to sleep all the time. So sorry you're having these problems. (((hugs)))
Kim....I'd be very afraid of any surgery with RA. A few weeks ago, there was a possibility of sugery on my neck. My Rheumy was very concerned & wanted to make sure the surgeon set it up in the middle of one of my treatments. There's lots of danger of infection. Every little thing that happens to me causes infection. I burned my finger on a hot plate 2 weeks ago. My Dr kept going on about it this past Monday because it's swollen & almost blue! Wants me to let him know if it gets worse! All because of RA! Just be careful.
Happy Canuk...I've always enjoyed that story of the spoons. In fact, I've had it saved in My Documents since the first time I read. It explains things better than I EVER could!
I went through a spell of craving those sweets yesterday! We had Gumbo cooked by Br Jones mother, who's visiting from LA....so, she knew how to cook it! She also knew how to cook a declicious cake. I ended up eating a very small piece. I know...........
Wifie.....you sound so much like me...we could almost be sisters! In a way, I suppose we all are! Hang in there. What choice do we have? It's either fight for our life, or give in. What kind of life would that be? I still have things I want to do, & I sure won't get to do them if I give in. I know my family doesn't understand. They seem concerned, especially my 3 married daughters, but I don't want that. I just want understanding when I don't feel well. I like to just be left alone & people to not be hurt at me for not doing things they want me to do. I'm sure you understand what I'm saying. There's always something going on, places to go, etc. I have 11 grandchildren that I love dearly. I'm not able to go watch them cheer, play ball, etc. As the day goes on, I get weaker. I do try to take one grand at a time & have a day alone with them. It's always been a tradition. This way, I can pick the day I feel up to it. I'm sorry.....I'm rambling.
Hi Joanne....How's it going with your sister, now? Have you worked anything out with her so you can have some beach time alone? I hope so. I bet that beach is warm & beautiful now! Oh, I'd love to go lay out or walk a little while on it!! Think of me next time you go.
Breakfast: Coffee, 3 sugar-free cookies
Lunch: Salad, Diet Sprite
Supper: Gumbo, The remainder of my diet Sprite, a very small piece of cake.....well, I was honest!
Saturday: Coffee, 3 sugar-free cookies
Lunch: Lean pocket, water
Supper: Beans, a little cornbread, polk salad (anyone heard of it???) Picked out of the fied....boil & drain...fry with onions & eggs....yummmm! , water
04-19-2005, 02:51 PM
Good-almost-not-morning. Looks like its getting closer to lunchtime. OOPS
Well I'm still kind of fatigued but I've been trying to get myself in bed before 10 and that seems to help a bit. Its just strange because I'm not really hurting at all, except for my foot. And that I believe, is because of my shoes.
I'm working out the kinks in my eating little by little. Yesterday I didn't have any sugar. I felt alot better without it. I also drank 74 oz. of water by dinner time. Today I had some oatmeal so far. I'm trying to keep drinking water. I read an article that said sugar and artificial sweeteners can create a build up of junk and make your liver not function properly. So I guess I'm trying to get rid of that stuff in my body..at least some of it.
Charlotte-Any news about what they are going treat your lupus and fibromyalgia? I wish you felt better. Darn stuff! Rest when you need to, I guess. I'm still struggling with that with my husband. He thinks I'm faking the non-peppy feeling. I wish he only knew. It goes right along with that "you don't look sick, so how can you feel that way" thing. Just had to tell you too, that I go through periods (long periods) of insomnia too. No matter what, I have a hard time staying asleep during those times. Wonder why that is.
Hi Joanne, How's the beach? I really dream of being there today. We have a yucky cloudy, snowy, drizzly day. Its a nice day to stay inside but boy would some sunshine on my face feel so good.
Hi Wifey-How are you feeling today? Hopefully somewhat better. The beginning is the hardest. Along the way, you find ways to cope with the pain and different ways of doing things. There are tricks to try with RA... ;) Each person, I swear, is different. I haven't had any real intense pain days for almost 2 years now...with the exception of my wrists. Since I've been put on methotrexate, I've been so much better. Also good enough to not take much of anything else. Thank God!
Well my sister is here, so I'll check back later.
04-20-2005, 01:31 PM
Hello everyone, I am back feeling a little better. I started taking all my vitamins and herbs correctly again and am feeling better. I also got tougher with my diet, and am only eating meat,eggs,fish, poultry, and small amounts of vegs. I am also staying away from the scale for a while. That is what got me in trouble last week . I seemed to have gained back 4 of my 5lbs. that, and my pain threw me into a nasty mood.
Thank G-d for this board and all the words of encoragement (sp?) it's what I needed to get me back on track again. I will have to find some form of excersize that I can do without having to put too much stress on my feet. It was bad enough not having energy but now with both feet causing me so much pain. Oh well in the imortal words of Scarlet I won't worry about it today I'll think of it tomorrow. lol . I have to say now that I cut out all the carbs I'm feeling more energetic.
So far today for breakfast I had about 2oz of chedard cheese, coffee and a bite of pork chop from last nights dinner. Wishing all a happy, and wonderful day. love, Wifie
04-20-2005, 07:07 PM
For those interested in Fibromyalgia. Some info in here. I have a support board for chronic pain, if any of you are interested, let me know. It is a closed board and can be accessed by invitiation only.
04-20-2005, 08:41 PM
Hello Everybody- I went to my first water exercise class today. And yes I am sore. Mainly my legs, knees and feet. I also walked 3 miles today. The class was good. I would recommend it for anyone who finds it hard to do regular floor exercise. That gave me 2 hours of exercise today. I will keep to that schedule 3 times a week and just walk the other days. I am trying to increase my exercise . Maybe that will keep me over the edge when I feel like I just have to cheat on my eating plan a little.Being just me I know that is what I am going to do. I have too many temptations.
Happy - What a cute little girl. Must be your G/daughter.
Chrilly- I am usually in bed by 10 but read till 11. Getting to sleep is hard for me..I take enough over the counter stuff to put a horse down. Not me though.The beach is nice. It was hot today when I walked out there. It is getting in the 80's here now.
Wifie- Keep working on your eating plan.. get rid of the carbs and you will get to your goal..
Angel- I do hope you are feeling better by now..My sister has decided that it is too far for her top walk with me "at her age". She is 2 years younger than me.God is watching over me. I had a feeling she would tell me that in the long run.Yes ,I will think of you and pray that you will feel like doing something really fun at least once a week.Get well.
Bye You All...Joanne
04-21-2005, 11:58 AM
I seem to be having alot of water retention. I have to admit I have not given up coffee, and I'm not drinking enough water so maybe that has something to do with it. Until I get rid of this fluid I won't go near the scale. Today for breakfast I had 2 tyson ready cooked chicken drumsticks. I was the only thing readily available and the way I was feeling I had to grab something fast. lol Last year by this time I had lost a good 30lbs due to my depression. I just couldn't eat. The weight just dropped off. Of course now that I'm desperate to lose this weight I'm having a hard time. Go figure. Oh course I was obsessing on something else last year. I have to keep reminding myself that it is not that long since I started this diet. It sure feels like a long time.
Hope everyone has a great day. love Wifie
04-21-2005, 08:24 PM
Wifie- You are probably eating too much salt. Remember any fast food,even the ones you have in your freezer have a lot of salt.. I use the chicken breast and cook them myself.Use lemon juice and seasonings.You won't miss the salt. The white meat is the least fat.. Drink plenty of water. Mark it down everytime you drink a glass(8 oz).That is what I have done in the past in order to keep tract. I have not given up coffee and will not unless someone tells me it is going to kill me. :lol: I have given up just about everything else.
04-22-2005, 01:36 AM
It's funny you should mention water retention. I was undressing to take a bath last night and there was a major indentation where my socks were around my ankle and my feet were puffy. My stomach feels bloated too. I haven't had that much retention in a long time. But I know I have been drinking alot of diet pop lately...extremely large amounts of sodium. Bad choice for me!
My feet are aching more again. Don't know if its the RA advancing a bit or if its my darn shoes.
Hi Joanne, I have a question about these water aerobic classes. Do you have to know how to swim? I don't but I have heard so much about these classes. It actually sounds like something I could do...provided I don't have to save myself from drowning. I wish I knew how to swim. I'm scared of deep water and I think it has something to do with not being able to see without my contacts in. I have the worst eyesight. My glasses that I wear at night are very very thick so I panic when I can't see.
Charlotte-Evening! Hope you're doing okay. Sure am thinking about you and praying for you.
Hi Happy, So is that your Granddaughter. She's going to break some hearts when she gets older. She is such a pretty little girl. The thought of my little girls getting older scares me, makes me sad, and hopeful all at the same time.
Barb-Hi to you too. I know you've been having a hard time also. Sending prayers and good thoughts your way too.
I really better get to bed. I'll talk to you all tomorrow.
04-22-2005, 05:32 AM
Hi Chris. You don't have to know how to swim to water aerobics. You can stay in the very front of the pool, but the deeper you go, the better workout you get. I like to be at least chest high.
Yes, that is my little Ashley. She just turned 7 this month. I can't believe where the time has gone. This was taken a few months back when the kittens were still small. They have now grown into full grown cats!!!! She has two of them. This one gets her in trouble, because she goes into her toys and pulls out the Barbie and Polly Pocket shoes and purses, the throws them around until she finds what she wants to play with. It is so funny. Her Mom and Dad thought it was Ashley doing it, but then they caught the culprit.
Wifey - hope things go better for you. That water retention is for the birds. When that happens, my joints get so darn tight they ache. The Dr. gave me some water pills for when that happens.
Joanne - glad you are enjoying your classes.
Angel - hope you are feeling ok?
Well, it is late and I need to go to sleep. Check back later to see how everybody is. This darn FM keeps me awake or makes me so fatigued I can't think. Seems like no happy medium.
04-22-2005, 11:17 AM
Chrily, Well I drank so much water yesterday but noticed my water retention is better. You could have been me talking about your feet, that is one of the major problems I am having right now. It used to be one foot that hurt like **** now it spread to both feet. When I take my socks of I'm shocked at the red mark around my leg. I am getting better though I think its due to taking all my nutrients. Happy Canuk I know what you mean about the joints being so tight. There are so many problems with this RA. Although I haven't been on the scale my H noticed that I look like I have lost weight. He is better than a scale because he has never been wrong.LOL
Yesterday I went to the supermarket and was going crazy with the store bakery smell. It was driving me crazy. But I was strong and today I'm feeling stonger for it. I'm going to try to do a little excersize today. How everyone has a great day love Wifie
04-22-2005, 08:25 PM
Chrily - I can't swim enough to save myself.. Never learned. I was always afraid to get over my head unless I had something to hang onto.The pool where I go is only 4 1/2 feet deep .I am just to my shoulders in the water and thats where the instructor wants us so that everything is done under water. You should try it..
04-23-2005, 01:08 AM
It's been a long day. I got some errands ran this morning and my sister came over. I helped her study for her physics test and then cleaned some and helped my husband put up some siding tonight on our shed. Needless to say...I pushed a wee bit too hard and now my wrist hurts AGAIN! It'll be in the splint tonight for sleeping.
Wifey, My feet are still a bit puffy today and they are achy. Of course, I get achier at a certain time of the month and thats only a couple days away, so that might explain my little aches and pains. What kind of nutrients are you taking? I've thought about it but never remember to look at the stores for anything and then I sit there and think-"Why would I want to have to take another pill?"
Joanne, I'm going to have to see if they have any classes for water aerobics that would fit my schedule. My other worry is being embarrassed in a swim suit and I don't know why but it embarrasses me to say "hey I have RA". It makes me feel different from everybody because of my age. I feel like a "baby". No offense to anyone but when you here the word arthritis, most people think of someone older. And when I tell some people I have RA, they look at me strangely, like they're saying...you wouldn't have arthritis if you weren't so overweight.
Charlotte-Hope your getting some rest. I know you are having such a hard time. I'm saying more prayers for you tonight and for all of my friends on this thread. I wish we were all normal, not sick- but normal seems so far away anymore.
Pleasant dreams and prayers for all. Wishing you all a nice night for some sleeping.... :)
04-23-2005, 08:31 PM
Chrily- If you can find a place that you can go for water exercise.YOU GO! And to devil with anyone else there. They are probably there for the same reason you are. To get healthy. It doesn't matter what you look like in a bathing suit.Keep in mind you are doing this for yourself. You are the important one.My daughter is a small person .Less than 100 lbs. She has arthritis. It isn't only the heavy people who have this problem. I have had oa since I was 18 years old. I didn't weigh 100 lbs then.I can't believe I used to struggle to gain weight! Now I struggle to lose it. Imagine all those fat cells I was growing..What I do now to stay healthy is for me..You do the same. I know you are probably a busy girl. SOOOO! take an hour out of the 24 for yourself..Your family will survive..
Love you all ..Joanne
04-24-2005, 11:07 AM
We've really been having showers the last few days. Before that...beautiful 85* weather! It's turned cold again for a few days. (Blackberry Winter)
Sorry I'm slow about posting, lately. Just haven't been on the computer much. I've been pretty busy with different things....so, when I stop, I'm exhausted! I went 2 nights in a row with NO sleep, or daytime naps...then, slept about 30 minutes one night. :( I finally slept last night. Must have been really "out of it" though. I woke up this morning with my duster still on, over my pj's. :^: I didn't tell DH...he thinks I'm crazy enough. :o Not going to church this morning.....
Thank you all for your sweet concern. I'm ok. Just have to vent sometimes. I know DH & a (very few) others I vent to, must get tired of hearing it. I'm trying to cut back on complaining to them so much. I don't want to be a whiner. I'm really being taken care of at the TV Station. They bought me a very nice comfy chair this past week! They said they noticed I'd been squirming around & have to walk around holding my back, sometimes. Well...the other chair (which they bought me 2 yrs ago) was still fairly comfortable, but this one is MUCH better. ;)
Also, one of the AV Engineers goes to a place where he buys large boxes of brand new item, at REAL discounts, not knowing what's in them, & resells for a profit. He gets some really nice stuff! I'm getting a new computer desk (very nice!) for only $50! I checked it out, & it normally costs over $300! So, I know he's really giving me a deal on it. He could make a lot more profit. ;) He says that whatever he gets that I want while refurnishing the house, to let him know. :D Maybe we're beginning to see a turn around here. :) I know I'll feel better about everything when the roof is finished & DH is off of it. It has such a high pitch, it worries me. He doesn't want to admit that he's not so young anymore! ;)
Joanne...I weighed 98 lbs when I got married. :D I was soooo skinny! I was embarrassed because I didn't have boobs. :lol: My daddy told me that if I didn't have hips, my skirts would fall off. :o My weight changed when I started having babies. Of course, the first being twins....... Now, I wish my boobs were smaller! :^:
I'm glad things worked out with your sister. I thought of you a lot...I know what that "alone time" means to me.
Chrily...Sorry your wrist is acting up again. It sounds like your RA may be advancing. Just be sure to tell your Dr everything. I didn't take my Rheumy serious, at first, when he told me to tell him of any changes. I understand now, that any changes might mean a problem. Like my thumb problem...I thought I had a sliver of glass in it, or I wouldn't have even mentioned it. Now, I realize I could have lost it, or my hand! EVERYTHING needs to be checked out, just to be safe. Speaking of my thumb, since I've been on the circulation meds (Trental), it's doing fine. :D
Wifie....I'm glad you & others mentioned the indention the socks make on your legs. I'm sorry it's going on....just glad it was mentioned. I haven't said anything before, but, it doesn't matter how soft the sock.....looks like I've had a tight rubber band around my leg all day! :( I have diuretec in my blood pressure medicine, but doesn't seem to be enough. My legs & ankles are swollen bad by evening.
I worry about the scales, also. I know my weight is a little better, since I've been off sugar. But, I still fluctuate. I know it's the fluid retention, but it's still aggravating.
Happy Canuk...Thanks for the site....I'm trying to understand more about it, to maybe, help myself. Do you go back & forth with insomnia, then wanting to sleep all the time, & hard to wake up? That's how I do. I do notice a pattern, though. When my Remicade starts wearing off, the insomnia is worse. Dr. prescribed Zyrtec for me, but it's soooo high. I only use them when I absolutely have to, & when I take a treatment. I have to take Zyrtec & Benadryl during the treatment, because I'm sensitive to Remicade, & an allergic reaction can be dangerous. At least, I get my sleep that evening & most of the next day. ;)
I suppose we didn't do so well keeping our meals posted. Sorry :^: I have been good though, with my eating. Still no sugar. I believe it's helping me.
Gotta go, girls. Hope all have a good Sunday. Hello Ageoldie!
04-24-2005, 02:56 PM
Hi ladies...this is going to be a group post since I have alot of stuff to do today...mainly laundry since my hand was working to fold clothes yesterday. It feels great today though.
I went to my mom's yesterday and I was really upset seeing how crippled up and in pain she is. I just wanted to shake her and say...Tylenol isn't going to make it go away! She always looks on the verge of tears anymore and it just tears me up because I know how the pain feels. Well this morning at church, she told me she is getting tired of the pain and tired of crying all the time. So I asked her yet again...Do you want me to call my doctor and get you an appt? She said YES!!!!!!!!!!!!!!!!!!! I was so happy to hear that. She needs some relief. She can't straighten her arm out, her legs hurt, and she can't open one hand up all the way. I know she's got some permanent damage that isn't going to go away ( I think she knows that too) but if she could get some relief from the pain and swelling she'd be so much better. I also think she could benefit from some anti-depressants. She is just having a very very hard time. She has a very hard year so far with the uterine cancer and such. Its one of those things where if I could take it all (the pain, the emotional problems, etc)...I would do it just for her.
Today I'm going to try to get the laundry done and start working on my nephew's Spiderman quilt and curtains for his bedroom. They all just moved into a new house a few weeks ago and he doesn't have curtains so I thought that it would be a special present for him to get some with Spiderman. He's 3 yrs old and thinks Spiderman is #1. It'll be neat to get them done. Then maybe I'll feel like I'm clearing some clutter out of my sewing room. I have so many projects going. YIKES!
Gotta go. No telling where Nicole is. She's in a wild mood today. Driving her mama insane. :dizzy:
04-28-2005, 12:23 AM
Where did everybody go? I was going to check and see how everyone was. Today has been a good day in my world. I got all my laundry done and put away. A major accomplishment in this house.
Tonight I went to Pier One Imports since my SIL got me a gift card for my birthday a few weeks ago. I got a really nice spice rack, a rose scented pillar candle and a holder for it. I love the smell of roses. That and the scent of pine trees are the greatest things.
I'm hoping you are all feeling better or at the very least, getting some much needed rest. I am thinking about all of you and sending some pain-free day ((vibes)) and prayers. I'm going to go soak in the bathtub and read for a bit and then go to bed.
04-28-2005, 08:02 AM
Good morning everyone,
Finally got back to you all...even though it's almost 6 am. Woke up very early this morning. I never know if I'm going to be sleeping too much, or not enough.
I haven't been feeling well at all the last few days...didn't feel like being on computer, or doing anything, really. Maybe my treatment will help me, Monday. I sure hope I still get it....& the Dr can explain a few things to me that I still don't understand.
We've been having some beautiful weather, up in the 80's. Got a little nippy the last couple of days, but not bad. DH took the tarp off the house, to not put it back. He said there would be the black paper before any rain. Well...........surprise.....it rained, & rained, & rained! We had 3 or 4 of those 5 gallon buckets in each room catching the water! I have clothes in tubs where a closet use to be (those are my dressers for now.) They got soaked, so I've been pretty busy. I feel so sorry for DH. I'm trying my best to not get bitter toward his family for not helping him, at least, with the roof. They all know what we're going through. He has 2 brothers & several nephews that has needed his help so many times....& still do! I know......I've told this before. It's just hard for me to understand. I don't have anyone on my side of the family, left living. Just my 2 sisters.....& one sister has nothing to do with us, hardly. We stopped letting our children know so much what is going on....they were putting in a lot of their time here, & letting their own needs go. Our son that moved back home (temporarily???) after his divorce helps on a rare occasion. I love him, & I'm proud of him for getting off drugs & being a very good dad to his two little girls....but, he could help a lot more. I'm really praying that he'll decide to find his own place, soon. We've let him know that he needs too. Especially for his children's sake. He has them every other week, & they need their own place. Our bills have doubled & tripled because of them all being here, & it's rough. We're being very careful, though....he's been clean & taking the girls to church for well over a yr, & don't want to discourage him. I know it isn't easy, but I also know he's taking advantage of us. Gee.......I don't know where all of that came from. Remicade wearing off, I suppose. I get sensitive & plain spoken during this time. I don't say things I shouldn't.....just get braver with my talk & take up for myself in a way I ordinarily don't. Sometimes, I surprise people. I didn't like the way Randal (one of our younger AV Engineers, who has a LOT of growing up to do!) did with my program Monday night. He was very lazy & didn't pay close enough attention to what was needing to be done. I was visibly upset when I finished it, & told Connie. She was in our office & had noticed something wasn't going right with my program, but had people in their with her, so couldn't check it out. She said she would talk to him, & I told her not to. I could take care of myself! I came home & vented to DH (who catches everything, bless his heart.) Then, I spent the next day cooling off, & praying about it. Tuesday.....I had a "discussion" with him......in a Christian way....but, plain! He was volunteering to do things around the station for me, by the end of the day. He's a good kid, but, like I said.....really needs to grow up. Now, if I had not needed a treatment.....I would have just come home aggravated, & not said anything.
Yesterday was Secretary's Day.....I got beautiful flowers!!!
I know I've rattled on & on....it's just so early in the morning, & everything goes through my mind.
Chrily....so glad your mom decided to finally go to a Dr! Let us know how the appt goes.
Hey...you have a lucky nephew! An aunt that will sew Spiderman quilt & curtains for him! :) I hope he appreciates it.
Your birthday????? Did we miss it, or do I not remember, now, that you had one? I hardly ever check the profile........you need to tell us these things BEFORE....so we'll know! Whether we did or didn't......I sure hope you had a good one!!!
Hello Joanne, Ageoldie, Wifie, & Happy Canuk!!!
Gotta go.....love you, my friends......
04-30-2005, 11:54 AM
Good Morning Fibromyalgia, my name is Will, Will Power and I would like to introduce my friends Hope, Laughter, Smile and Prayer. We are the new sheriffs in town and we came to lay down some new law. We decided today we would wake you up instead. I see you sent Ache and Fibrofog already. Prayer and Smile are ready to deal with them before they get started. Oh, I know that they arenít gonna go away right away and it looks like Ache wants to stay all day. Thatís okay because Smile can hang with the best of them, and eventually Ache and his crazy friend Pain will just be a memory.
You see Fibromyalgia, what you need to understand is that you attacked the wrong kind of person: A Diva. You saw her break down after that car wreck and thought you would take advantage. Little did you know, Divas bounce back, and they look good bouncing back, to. Yes, I will admit, it took her awhile to give us a call, but she sounded the horn and here we are in full force, ready to kick your butt and take prisoners.
Let me further explain, remember when I went to that doctor, and you were laughing so hard you were rolling on the floor? You know the one doctor that really listened to me? Yeah, I went to a lot of them, but just remember my name isnít Will Power for nothing. Oh, did I forget to tell you that my middle name is Determined? While you were so busy laughing you didnít hear the most valuable piece of information he gave me: You canít kill me! When I finally let that sink in, you see, that is when my friends that I introduced you to earlier came in. That doctor had a friend named Hope also and another friend named Understanding. Both friends named Hope and Understanding worked with that doctor and I until we found the right combinations to replace the friends you took away. I know you have Good Sleep, but we put a remedy together that summons Mr. Sandman to appear on command. Energy is here too, but in the for of Pace, as in pace myself, and half of the time I get things done without even knowing it.
Thank you for Exhaustion, he is a good reminder of when I need to take time for me without guilt. Exhaustion taught me how to say ďnoĒ to loved ones. At first Guilt and Exhaustion used to hang out, however my buddy Prayer put Guilt out. Prayer, Laughter, and I (Will Power) got rid of Low Self-esteem, Depression, and Anxiety. My buddy, what my doctor prescribed, stands guard at the door so they wonít come back.
So, letís see where were we? Friends didnít understand and grew tired of me at first. However, Hope gave them some education. Prayer filtered out the real friends that stayed with me and removed the ones that didnít. So now I have a support group that love me and look out for my well-being.
And my buddy Laughter is the one that you got to watch out for. He has friends called Sarcasm, Jokes, and Harmless Pranks that keep us so busy; we donít have too much time to pay attention to you.
Look Fibromyalgia, I know you are going to be here with us, and from what I hear it will be for the rest of our live, but guess what? My team Prayer, Smile, Laughter, Sarcasm, Jokes, and Harmless Pranks, are going to give you a run for you money. So bring it on Fibromyalgia, letís see if you can hang with the big dawgs.
Sincerely giving you What For,
04-30-2005, 12:06 PM
Iím an Invisible Chronic Illness. I am now velcroed to you for life. Others around you canís see me or hear me, but YOUR body feels me. I can attack you anywhere and anyhow I please. I can cause severe pain or, if Iím in a good mood, I can just cause you to ache all over. Remember when you and Energy ran around together and had fun? I took Energy from you, and gave you Exhaustion. Try to have fun now! I also took Good Sleep from you and, in its place, gave you Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh, yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away, too. You didnít ask for me. I chose you for various reasons: That virus you had that you never recovered from, or that car accident, or maybe it was the years of abuse and trauma. Well, anyway, Iím here to stay!
I hear youíre going to see a doctor who can get rid of me. Iím rolling on the floor, laughing. Just try. You will have to go to many, many doctors until you find one who can help you effectively. You will be put on pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given a TENS unit, get massaged, told if you just sleep and exercise properly I will go away, told to think positively, poked, prodded and MOST OF ALL, not taken as seriously as you feel when you cry to the doctor how debilitating life is every day.
Your family, friends and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that Iím a debilitating disease. Some of them will say things like ďOh, youíre just having a bad dayĒ or ďWell, remember, you canít do the things you use to do 20 YEARS agoĒ, not hearing that you said 20 DAYS ago. Some will start talking behind your back, while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a ďNormalĒ person, and canít remember what you were going to say next!
In closing, (I was hoping that I kept this part a secret), I guess youíve already found out: the ONLY place you will get any support and understanding in dealing with me is with Other People With Fibromyalgia) sometimes with your understanding family.
04-30-2005, 03:40 PM
I left a long post yesterday and it didn't take...ARRGGHHHH!
I'm not going to try to write all that again. Today I've been busy doing housework, like usual. We have it mostly done, with the exception of the family room.
My feet are starting to ache more again. Dang it! Just when it starts going good, things change. Kelly's not doing so good either. He had his ankle swelling and turn purple on him last week and it went away. His eye was blood shot for a few days and went away. Today he calls me from work and says "Did you look at my face this morning?" I said no. He came home and showed me..it's all swollen like someone who had dental surgery done. He called his doctor and they want him to cut back on his Advicor and call him early this coming week. I think it's his thyroid. I bet it is cancerous...and they just haven't taken it out yet. Why does all this stuff happen? It's about as frustrating as it can get. I'm waiting for the day when the stress and strains of bills, work, health and family all slow down a bit. All I want is just enough time to catch my breath every once in awhile. It's seems like a fight for something all the time. Maybe it's from being a RA person. Things that other people deal with and handle, just become so overwhelming because the energy just isn't there to deal with it.
Charlotte-I hope your doctor lets you have your Remicade treatments. And I hope you get some answers to your questions. I know I feel better when I get to know more about what's going on, whether it be good or bad. It's eases my mind to know what I could expect. I'm a strange duck!
My mom almost sounds excited to be seeing a doctor for her joints. I am totally surprised. Maybe she just needed my continual prodding and not giving up on her to get her to make a decision to see the doctor. I don't know...I think she feels better knowing that someone is worried and that she doesn't have to deal with it alone. She's so busy trying to act strong for everyone, when she doesn't really need to be. She can hide it from others, but I'm "special" because I've been there and KNOW how it feels and the intensity of it all, even if on the outside nothing looks amiss.
I guess I should go fix some lunch for me and finish up with the family room. Then I can MAYBE just maybe, sit back and read or something for a bit. That is another problem for me...with Kelly working at Sears in the day and doing appliance repair calls in the evening (he started his own business), the swim lessons for Kayla, the dance lessons for Tiana, and just being a mom, there is precious little time for me to do anything for myself. I feel on call 24/7. I'm a mom, housekeeper, wife, carpooler, and bookkeeper now...YIKES! Well praying for a pain-free and restful day for all of you.
Wifey-Please let us know how you're faring right now?
Joanne-How are those walks on the beach? Feeling good too?
Anne-Thanks for the stories. I'm going to print them off and let my husband read them. Even though they are for fibromyalgia...maybe he'd understand.
Barb-Where are you? :)
Going to forage for some food in the depths of the refrigerator and see if I can come up with something healthy to eat for lunch.
04-30-2005, 11:13 PM
Hi everyone, sorry I haven't been around much, but life has been just too stressful for me the past few months. I did want to check in on everyone and let you know that I'm still around and stillthinking about you,
Charlotte: sorry about out othe new dx's. both Fibro or Lupus is something to be concerned about. I have an online friend in England that has just retired from nursing and has a fairly new Lupus site. It's called Lupie Lupus Check it out. It has a lot of info, but also a lot of humor.
Anne I love your Fibro post and your "friends"
Chris, I agree with Joanne. If you can possible find a place to do water aerobics, do it. I credit it with keeping me as mobile as I am. On the days I miss it, or just don't feel like going, I can tell by afternoon that I start to stiffen up and the pain is a lot worse those days. There are all sorts of classes and all sorts of pools, but a good place to get started is to check with your local Arthritis Foundiation. Almost all of the chapters have programs that they recomment at places that are appropriate. And some are even paid by insurance if your doctor writes a prescription.
Kim, I'm not a doc, but I disagree with the others. I think that Gastric Bypass would be good for someone with RA. I know that OA is one of the co-morbities that will help it get approved by insurance as medically necessary. But you would have to get clearance from your Rheumy before the surgeon would do it. (If not, I would question the surgeon) WLS is a big contriversal subject, and not without risks, but the outcome can be very worth it. Be sure to check out the WLS thread here on 3fc. I haven't had time to check in there for a while either, but it's usually a very friendly and informative group. Any any questions you have will be answered there.
On the whole, I am feeling much better since my doc has started treating me for Asthma and High Blood pressure. I went out of town last weekend and almost had to take an extra suitcase for all my "Pills" and things, but as long as it keeps me moving, it worth it.
I would say I would be back sooner this time, but I don't know if I could keep that promise, so I'll just say I'll be back when I can.
05-04-2005, 10:02 AM
DON'T POST HERE!!! GO TO "FRIENDS WITH OA & RA #17"
SEE YOU THERE :D
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