Just wondering...odd thing, this RA. One day you can play guitar untill three in the morning with old friends - one day you can't put on your own belt. One day you can work hard in the garden and not feel a thing - one day you relax and do nothing, then feel as if you got hit by a train. One day you wake up and realize the world won't be running a path to your door anymore...so you take a shot of Enbrel, your MTX, your Prednisone, your Celebrex, your painkillers, you take your Omega-3, then you try to remember just what door it was that you once heard knocking.
Just wondering if anyone else out there has a similar feeling?
YEP!!!!Absolutely! You got my life at least all figured out...at least the version of RA that I have.......aint it just so much fun?
You learn to cope with it is about all I can tell you. It is heartwrenching at times, other times it is just a dx, other times it is your whole world, second by second in sheer agony.
It is 1 million times worse without a spouse because whether you are in a flare or not you are the only one that is responsible for everything to do with the home and finances, raising the kids and mowing the lawn,running errands, then cook, do laundry and all the grocery shopping without the benefit of curling up into your spouses arms at night and saying, I am in so much pain, I just need a hug..........instead, you brush your teeth, goo on the night wrinkle cream, go to bed, and go to sleep.There is no sharing of responsibilities in car repair, loading the dishwasher or letting the dog outside, flare or not you do it all.
Justoday - You may be bipolar.Welcome to the boards and to the 'CLUB'
Absolutely! I know stress is supposed to make it worse, and blah de blah, but for me, there's no rhyme or reason to it. There's no way to predict it, because on some stressful days, I'm just fine, and on weeks where everything is going my way, I'm not going anywhere. Can't figure it out, and that's the biggest challenge of RA. Yeah, you just kind of have to learn to roll with the punches.Expect the unexpected. After all these years I still can not predict what sets this moster off. I've just learned to be flexible and not let the unpredictable nature of the whole thing upset me.Ditto. I have good days and think -- Ah! I'm getting better, finally. Then, slam, bam, down again.
Just remember to always get back up.
I know what you are going through. I have no husband and two kids. Fortunately, the kids are out of the house. But my daughter has severe problems that require lots of extra attention and are emotionally draining.
I was just wondering, what is it like to curl up in a man's arms and say, "I'm in a lot of pain" and get a compassionate, loving response? Even married, I didn't have that (yes, one reason I'm not married). No, the response would have been, "I want a divorce."
Well, he asked for it.
ya know girls; I was much happier divorce and single than I was married the first go around. Once I got away from the stress associated with my first marriage so much began to change in my life. Not nessesarilly my RA....in fact it got progressively worse; but I learned to deal with it. My mental state of mind changed so much after my divorce. Sometimes it's nice to be able to lay down and not have to explain it to anyone. Or stay in your pajamas late in the day or put them on early in the evenings. It's sometimes nice to not have to do their laundry and clean up after their disrespectful mess. Yes; there are indeed positives to being single. I remember them well.
NOW my second marriage is totally different. I don't know how I'd manage life without this man. Life with the right man is wonderful; even when you have RA. Having someone to say "Go rest; I'll handle this" or just someone to snuggle up with like you all mentioned means everything to me. He makes everything in my life easier. It's as if it's his mission in life to make mine better and I could not be more grateful for that.
I don't mean to get us off topic but I wanted to remind those that are single of a quote a good friend of mine told me right after my seperation years ago. She said "I'd rather be single than wish I was" and that hit me smack in the face. It made more sense to me than anything anyone said to comfort me after the seperation. I was lonely for so long during my first marriage and many, many times wondered....even day dreamed of a life with a fresh new start. I've kept those words in the back of my mind since that day and often repeat them to friends in simular situations. Single life isn't that bad when you think of the alternatives.
Exactly the same for me. Amazing how things change day to day, hour to hour. I was off work yesterday for to take care of a few personal things. Took a nice hot bath in the morning, had my coffee, did some reading and enjoyed the nice sunny day. aroun 1:00, I was tired, achy anddiscouraged...all changed in a matter of hours!!
But I have to admit, right now I would much rather be still married (our situation wasn't majorly bad-just issues) with the way things are going now. Being alone is so hard. There are times there is no food in the fridge, and I am so hungry, but in so much pain, I can't walk the 1 1/2 blocks up the hill to the store, so there is really nothing to do but try to sleep and wait for tomorrow.
I've been feeling lately like I would love to have my husband back, even if we just lived together as friends, and supported each other (he now has ra too) and helped each other out. we did have a lot in common. What is really scaring me is continuing on in the future alone, having to try to take care of myself.
I wouldn't want have a roommate myself. I just barely got both kids out the door. And, everything I think one of them might need to move back in, I just cringe at the thought of giving up my hard earned personal space. But Tara, I totally understand what you are talking about. There are some other things you can do, depending on what area you live in. Your local grocery store or pharmacy may deliver. Fortunately, this trend is growing. Some hospitals can connect you with a social worker to help do some of these things. It's a kind of assisted living, but not outside of your home. It is hard though, and sometimes, I cannot go out and take care of the simplest things. I tend to buy my groceries at Target where I get my medications. I have to force myself there and I can pick up a few things. You should look for whatever help that you can get. That's going to be easier than finding a good man. And, maybe you and your ex could find ways to help each other. But do you really want to live with him again. That sounds kind of stressful even in the best situations. Besides, what happens when you both are flailing on the ground together, unable to move. And then there is all that constant "crunching" noices as you move through the house. Of course, you could cry together and vent. But that doesn't sound much better. The roommate suggestion is pretty good. Also, you can get home health aides that the state will pay for to come in your home and do things for you. But it sucks living like this. I forget are you already on disability? Well, when you put it that way then me, too. When they are cool, they are really cool. Deanna, In your search for the frog with the body parts, maybe you will find a few frogs that are really princes for those of us single women as a "bonus" to your endeavor!!!
Hmm... I think that's harder than finding the spare body parts. I don't have much luck with men. Hey, are you still good looking? Maybe we could use you for bait. Find the frog and then one of us, could kiss him. I voting for you. I think I've kissed a few too many. Let's go frog hunting together. Maybe if we look for frogs instead of men, we'll lucky. I miss men. You're right. You can't cuddle up to yourself. Perky boobs, that will probably do it. Boobs seem to be real "big" thing on this forum. Everyone seems to want a new set. I don't what the limit is on frogs. I wonder if Roxy knows. She's a park ranger. Let's go ask Roxy. HEY ROXY!!!!!! I may have to get a dog. At least I'd get kisses and something that was always happy to see me.
I enjoy my single life most of the time. But, as I am getting a bit older, knowing the kids are going to be gone soon, I like the idea of having a best friend around all the time to snuggle with, play with, talk with and in general grow old with... I miss the adult male companionship.
I've kissed a few frogs myself, what's the limit? Do we have to go through fish and game for a license?
I cuddle with my dog every night, he even snores in my ear with his head on my pillow, but it's just not the same.... *sigh*
You guys are funny! Deanna, I can just picture me &
my ex laying on the floor crunching!! Roxy-the
'frog count' thing brings back memories...counting
fisherman and fish egs with my dad in yellowstone!!
Deanna-great ideas about the assistance. I'm
especially struggling now since I live in 'the city'
without a car, etc. Keep thinking about home sweet
home in las vegas-no family there now, but having a
car and and easier place to live would make sooo
much difference. Not sure if that is the answer or
moving near one of my sisters, or...? (long story as
to how / why I am here now)
Anyway,,,I'm not on disability because I really have no
choice but to work as it is so expensive to live here
with all my bills, etc., and of course the need for
insurance. I have been diagnosed about 1 1/2 years
and missed alot of work at first. This was of course
documented on my year-end review, and I didn't get
much of a raise because of it.
I'm constantly reminded that I have to control my
'excessive absenteesim", so every day all energy
goes into getting up, getting ready for work, taking
the 2 buses, and doing a good job. Ok, now I'm
really whinning. But thanks again for the support
and the ideas for assistance. Will have to see what
is around.
Tara,
I had forgotten about where you live. There is town close to San Francisco which has a blind school. That's where my ex-boyfriend when for his training. He said it was across the bay and very easy to get around. I don't know if that might be a possibility for you. I forget the name of the place. But it does have the blind school.
Las Vegas, though, might be a good place. At least until recently, housing was much lower there. Plus, it's flat. I can't do all that climbing up and down those streets where you live.
Maybe you could check out the resources ahead of time by looking on the Internet. Then when you find the right set of resources, look for a job.
As far as your sister's, that would really depend on how supportive she would really be. Families can be very variable on that. I can't trust anyone but my kids. My family still doesn't get that RA is so disabling.
But at least you know there are options out there.
Yep, going to try to figure out andThat's what we all come here for rambling and listening.
Hey, don't listen to your dad about your age. We are the same age and that is not going to stop me from taking new steps in my life. Anymore, 48 is just not that old in the workforce. Well, maybe in CA it is, but not in Phoenix.
What kind of work do you do? Because I am familar with both Santa Fe and Albuquerque. I was born and raised in New Mexico. My sister lives in Albuquerque and I have researched moving to Santa Fe.
Santa Fe is really nice, but expensive. However, it is easy to get around in. It only has around 60,000 people. Plus there is Sandia Labs and Las Vegas, NM, both of which have a lot of jobs. The pay scale is lower than CA, but so is everything else.
But you sound like you would be more comfortable in Las Vegas, NV. If you have a good church there, it is an awfully good place to start to find resources. You could even call the pastor and tell him what you are trying to do. You never know, the answer might be a call away. And, not being so lonely and isolated is one of the best treatments for this illness.
Hey Tara, have you ever thought about hiring a teenager to run errands for you? For a few $$ a week you may be able to get groceries bought and put away, plus a few other things done. Maybe a neighbor or someone from church has a responsible teen/college student looking to pick up a few extra bucks each week. It sure beats babysitting someones brat for money!---at least through the eyes of a 16 year old.Secondly, IT HAS BEEN BETTER FOR ME being single tham married to my ex husband, no doubt about that for me in my situation, my ex husband is crazy, irresponsible and nutz, mostly disrespectful to his children, well "our daughter". First born gets away with too much, always did always will. My fiance'.......an entire different monster situation and yes the compassion would have been appreciated if it would have only lasted.
My daughter has begun to help out more around the house, have a car prob right now (at 11 last night had to go to follow her home, minor prob with the car) She is responsible for the laundry, at least hers and will pick things up from the store. When I was a young mom, divorced, it was difficult, I just learned to order in ( well my kids had learned how to order in at a very young age) and I bought large amount of food when at the grocery...*along with the wine but don't tell anybody!*
It would be nice to find a man to curl up to at night and say to him , "I don't feel good" and recieve a warm and compassionate response because he understands RA, understands mother nature and her joke on the human body concerning the aging process ( better known as "too many birthdays" quoted from my RD). But I am better now being away from the x husband and the x fiance'. I miss my friends though so I invite them here to enjoy BEAUTIFUL MICHIGAN! *
The advice on this thread has helped me a lot concerning the nature of this beast and being single.
"I'd rather be single than wish I was"
This is the best saying of all time.Thank you! Says it all in a nutshell huh?
As far as RA :
Example:
I was on the road all day yesterday, then a meeting last night ( my bro-in-law is running for County Commisioner(SP) so we politicted last night)(not my fav thing to do but will be supportive of family), then the neighbor got a new sports car convertable ( his wife recently moved out) so he took me for a ride in it........oh Spyder Mitubishi (sp)you are sooo sweet!WE both needed an escape and the convertable was fun ( ANd no, this is not a romance, we are just good friends ) Anyway, Then watered the lawn and then at 11p/m had to do the rescue thing with the car and daughter issue..............all on 2 hours sleep the night before. It was midnight before I got to bed, then the dog barked wanting to go outside, and you guessed it; right when I layed my head on the pillow. SO I am fatigued, in pain and need to rest today.I know I pushed myself too far but I had to do it and if I would have tried this even 4 years ago I would have been bedridden for a week after all this activity...granted it is way to much anyway for me but I HAD to go for a ride in the car(wink) and laugh for awhile, and the car thing with the daughter was an emergency.
You just learn to cope with this disease or cry because you cannot cope, that is all I know. That is all I have done. Ra is unpredictable. Period.If you trust your RD and know he/she is seeking your best medical treatment possible that is all you can do.
jode
Tara~Sweetie I feel for you. I've actually been feeling pretty good lately so last night my husband and three of our children decided we'd walk down town (About a mile and a half there) and go to the Thursday night concert and get some dinner and ice cream. I wasn't half way there and I knew it was a mistake. (I did make it there and back though thank god!!) I can not imagine having to depend on walking for everything. I think the teenager idea is awesome! I have a 16 year old that would jump at a chance like that.
A few dollars for gas and even would have him jumping on the idea. It would be well worth it for you.
I just love you guys-so good to talk to others who understand,,,and I REALLY appreciate all the ideas. So many things I never thought of!!
Deanna-I spent 20 years working for Levi Strauss & Co. (in vegas-distribution center) as a quality/ops/inventory/accuracy manager (various lengths of time in each position) I loved it. i was able to be very active and out of the floor, and of course, it was a lot of responsibility. (I have dreams about doing that type of job again, but don't think I would be able to now with the RA) Now I am working as an executive assistant at williams-sonoma and am thinking I need to looks for similar work, possibly also operations/project management stuff. LOVE inventory management & very good at it.
Thanks again guys for the ideas, and if you know of any cool jobs...let me know.
And about being single/married....I do remember I was grateful not to be 'stuck' in the marriage at the time. I did feel hopeless a lot. could be my thoughts now are just 'the grass is always greener' thinking!!! Happy Friday to all... I recently heard someone that I've grown to respect say "The grass may be greener on the other side; but it still has to be mowed" That made a lot of sense to me. Tara, I understand about the heat. It kills me in Phoenix. I keep threatening to move away, but something always brings me back. Now, that both kids live here, I don't have much desire to go. I think following what your heart wants is always better for your body. It seems to lift it up and carry it along in spite of this illness. You have an interesting career. I wonder if your experience would translate into those Project Management positions that I see open all the time. I know your experience would get you good jobs in Phoenix. I have to think the same is true in Las Vegas. It's a lot to think about, but you'll find what you want to do. Listen to the beating of your own heart. That's where the answers are. That's what I'm trying to do for myself. I have to make a change too. Roxy is right, you should get closer to your family...you would prob. have a lot less stress just knowing they were close by if you needed them. Last summer I was planting a garden. I was lifting heavy bags of dirt and putting them all around, digging up the ground, planting in a fence etc. 6 months later, my husband was trying to feed me, help me get out of bed to get to the bathroom, was laying in bed crying night and day cuz the pain was so much i couldn't even roll over in bed, i had to have my legs lifted into it. Exactly a year later this month, I am now on lots and lots and lots of medications (still more to come next week) can finally do almost anything i need (still have bad pain but can walk around and do normal stuff myself like dress, eat etc.) But it is amazing to me just how quickly i went from loading and unloading heavy stuff to not being able to lift and hold a spoon well. Marisa, You could be describing me with the "can't get comfortable no matter what" description. I spend half the night on the couch and half on the bed because certain parts of my body start complaining. CA has to be one of the most expensive states to live in. In AZ, we have had a huge influx of Californians looking for lower prices and more elbow room. Las Vegas is even cheaper than Phoenix. It's probably worth looking at. The one thing RA gives you is plenty of time to think about things. Unfortunately, this often turns to worrying for me. My son just dropped by and I wanted to talk to him about my different options. Sometimes, he can be the most understanding, sensitive guy. Today was not one of those days. Oh, he started with the "don't think about what you can't do any more, start thinking about what you can do" speech. Now, him giving me that speech is ridiculous. As many difficult situations as I've had to work my way out of, and he knows it, well... I just think he can't accept my limitations. His mom can do anything. This is the same kid that comes over and routinely moves this or that or cleans for me. He knows I cannot do things. I'm just discouraged because I am having a hard time deciding what I am going to do about work. I'm supposed to be working from home, but have only been able to manage that 2 days this week. I am so tired and working hurts so much. And, all the things I love to do most are things I do on the computer. It really is hard on me to try and consider a totally different career path or to choose disability. He doesn't understand disability at all. He sees it as giving up. And, his attitude depresses me. I asked him what he would do if he lost the use of one of his arms. Oh, he'd keep working. He'd find a way. Well, I'm glad he has that spirit of determination. And, he gets it from me. But right now, I could use a little understanding about how difficult this situation is. In a month, my boss is going to want to know what I am going to do about my job. When I go back to the doctor and I am not doing any better, they just might insist I go on disability. What I think I want to do is go back and get a master's degree, like some of my friends here have suggested. But that is not a quick process and I have to solve my work situation sooner than I can get into school, if I can even do that. Plus, I am afraid I won't be able to hold up even to school. It's been pretty downhill physically lately. The rest of my life has started going like I wanted it to. But this darn body will not cooperate. I hate the downtime that RA gives you. It gives you too much time to think about what live could have been and isn't and what you want it to be and how hard it is to get there.
Now about this RA thing, this is the first time where both my RA and OA are flaring at the same time. The engery level is low and I want to do so much but can't. The only thing that is good about this is that I don't have to worry about going to work. The bad thing is that with all of this pain, I can't get comfortable. If I sit where I can prop up my leg to ease the pain in my knee and hip, my opposite shoulder will hurt. If I lay down to ease the shoulder pain than the legs will cramp and I become very stiff. On top of all of this ,my foot and ankle is so swollen that I can't get the shoe on! Walking around barefooted isn't an option as I find the litter that the cats have tracked on the floor. Yes, living with this is a challenge and sometimes I don't feel up to the challenge. Guess I need to go put on some Biofreeze and take a pain pill.
Marisa
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