I read last week's postings and am also thinking of Ed. I cannot imagine being without health insurance; it has to be incredibly difficult. I remember when Hilary Clinton tried to get national insurance passed when Bill Clinton was first elected; that was a huge disaster. I was behind her all the way but big pharma and the AMA never want to see that happen. Even with excellent health insurance and only having to pay 20% of my prescription prices, it is still a hefty amount. Massachusetts has just passed a new law which forces people to get health insurance or get fined. I can't figure out how they plan to do that. Those who are very poor sometimes qualify for no-cost health insurance (Masshealth which is an excellent plan) but if you're gainfully employed and can't afford your employer's group insurance (which can be many hundreds of dollars a month) or if your employer doesn't offer insurance, you are up the creek without a paddle. My two sons, both in their 30's, didn't have health insurance after graduation from college because they worked for their Dad's small business and he was unable to offer health insurance at that time. They would never go to the doctor unless they were squirting blood from an artery or something. A lot of my drug addict patients work under the table as construction workers/house painters/laborers and still qualify for Masshealth which kind of pisses me off since they spend all their money on drugs. I guess I better get off my negative soap opera. My friend's girlfriend was just diagnosed with MS; it puts my troubles into perspective.
Just another comment which is a question. I have arthritis in my hands and they feel like they are burning from the inside out. Does anyone know what I mean?
I do, Clare... I was diagnosed with Osteo-arthritis but I am showing classic symptoms of rheumatoid artritis... I have all the burning, throbbing pain and the swollen disfigurement of the joints.
clare - so sorry for the osteo-arthritis in your hands. yikes. it hurts so badly, doesn't it? i am not even sure what you can do for it.
yes, the insurance thing is criminal. that they screwed hillary's plan is beyond ridiculous. hope next mo we can get insurance. if they'll give it to us.
ed saw the dr yest. he DID have a mild heart attack on sat. i KNEW IT. he got some meds to take, also some nitroglycerin. and now that we're aware of it, we are working harder on eating better and he is trying to exercise more. what a wake up call. i wish we could have gone to the hospital on sat, but we don't have money laying around, and he just tried to deal with it. now we know we shouldn't have. thanks for all your thoughts!!
oh my god, jessie, that's terrible. doesn't he need to see a cardiologist or anything? does he have arterial blockage? my ex-husband went through this and had to have a stent put in the artery to open it up. i have your, ed, and lillie in my prayers.
Hope everyone is doing better this week. I missed last week and read the comments to catch up. It is truly deplorable that in this great country people who have worked hard all their lives cannot get proper medical care. I went without insurance for 7 months and will start back in August. With my fibro I get tendonitis almost everywhere and I cant take nsaids because I took so many I was bleeding from the stomach. With no insurance I cant get a shot to help with my heel pain...its so frustrating. I also had to quit my job in January after surgery to release the tendon in my elbow...I was afraid that the lifting I did would re-injure it. And you are all correct. Out there no one cares if we hurt. I am so tired of being in pain all the time. Tylenol is useless and I would give anything to be rid of the fatigue for a few days. I have had FMS since I was 25 and I fought a good fight, kids. I am now 56 and cannot fight this anymore. I have had to give in to the fatigue and sleep 10 hours a day; this from a woman who loved adventures and sharing fun. Now all I want to do is sleep. The pain can be risen above but the fatigue has stopped me cold. Thanks so much for letting me vent here in this safe place. Now I can pick up and go on again. I will keep you all in my thoughts.
It is so nice to have a safe place to write about these things. Everybody above is in my prayers. Mary, I am so sorry for your pain. Candida, my palms are always pink; I think it's just my coloring. Jessie, I feel like I know Ed from all your wonderful writing and pictures; I hope he does okay. Pearl, so sorry about your RA. Prayers and hugs to all of you. I woke up this morning feeling really sorry for myself. My body hurt (I hate that burning sensation), my tongue and mouth were dry like the Sahara and stuck together, and my eyes hurt so much. I was thinking that if I don't have Sjogren's then what the hell is wrong? If I do have it, how will I work and make a living? It's very frightening. I have made a decision to be very positive (in the early morning my guard is down and all my symptoms just made me feel really depressed) and if people here can stand me, it will be my one place to be honest. It's been hell dealing with all of this on my own (I'm divorced and live alone) and I don't want to tell my family stuff anymore because I know I sound like the world's biggest complainer. Here, I can be honest. The truth is I'm scared...scared that they will find something and scared that they won't. Either way I have to find some way to deal with this stuff. Thank you for listening...
Thank you for posting your kind thoughts, Candida. I am so sorry you had such a bad time in the store. (((Candida))). This really is quite a journey, isn't it? Everything seems a bit surreal to me right now.
(((Candida)))) more hugs for you...I am so outraged over the healthcare issues and the fact that you feel that you have to go out without your wheelchair because of thoughtless individuals out there. Rember that old playground chant?? "Sticks and stones may break my bones but names can never hurt me" Dont listen to those words. Listen to us. We know and care about what you are going through. Together as a group we will be strong. Its so good to have this safe place to just let it all out. It makes it easier for me to go on. (((Clare))) thankyou for caring. I know how frightening illness can be esp when you worry about how you can care for yourself. I will keep you all in my thoughts.
ah, hello everyone!! i am so glad that this healing garden is working for us! these new orange colors on the comment boxes make me sick (literally) so i haven't been on gather much. i emailed ben to see how i can fix the colors on my webpages, until/if they fix it. it is pretty amazing to me, that they would have chosen these colors. lots of people with neurological problems (and fms) have always complained about bright colors on webpages. well, i bet gather didn't know. but here i am rambling.
clare - YES girlfriend, we are here for you. not complaining, you are exploring and learning and we are listening! i am so sorry. it is so hard to cope with disabilities - esp new ones - alone. we are here for you. i don't know much abt sjogren's. do you have insurance? how do they test abt it, treat it??
mary - i am so sorry. yes, the fatigue is more than we can bear, isn't it?? i hope that you can let yourself sleep. a friend of mine with cfids sleeps 14 hours a day. i wish i could, my cfids is such that i have to take sleep meds to sleep. crazy, eh?? what can you take for pain?? did you ever try ultram? that worked for me for a while!!
you're right - it is so hard to give up our SELVES and adjust to the new self that our disabilities have forced onto us. i keep feeling like i should be the world-traveler that i used to be, the vibrant woman who had such fun doing things. now, i look at my smaller world and sometimes shake my head. i've grown used to it, i know it needs to be this way for me to not get sicker, but it sure is crazy.
candy - wow. i am so sorry you felt the need to go w/o your wheelchair, and then things got worse. yes, people's comments can cut to the bone. i don't care any more. i am too sick for it. but they do hurt, don't they? i am so sorry. what abt your husband - what is up next for him? your insurance situation pisses me off so badly. argh!!!!!!!!
well, ed carries his nitroglycerin around everywhere. thus far nothing yet, he says he has some phantom pains and aches bc he's thinking about it too much. of course. he can't do much exercise, etc...we swam in lake MI sat night and even the smaller waves wore him out. we can't do any testing until we get insurance. we can't afford it. we could barely afford to pay ourselves for the dr appt and the in-office EKG....sigh. our system needs to change, that is for sure. so hopefully next month we can get it going. i am so freaked out. his dad died at about the same age, when ed was 4. lillie's 4 now. we have to break this cycle!!! i can't live w/o him, that is for sure.
for myself, i am exhausted. we have one more weekend to go, down to my parents on the weekends to watch their dogs while they're in scotland. after next weekend, we'll have been gone 4 weekends in a row, bc we went up to our cottage for the 4th of july. it is really difficult for me, all this traveling and changing houses and etc etc. of course i would do it in a heartbeat for them, but still my body is complaining a bit! of course.
today i need to take it easy. the house is a complete pigsty. usually there are paths in rooms, but lillie's toys are so everywhere that there is no path. we'll see. it's been so hot and muggy that we've just been inside as much as possible. i am so grateful for AC....
i am so glad that we are using this group to help each other, and ourselves. love and hugs to you all!!!!
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Comments: 22
yes, the insurance thing is criminal. that they screwed hillary's plan is beyond ridiculous. hope next mo we can get insurance. if they'll give it to us.
ed saw the dr yest. he DID have a mild heart attack on sat. i KNEW IT. he got some meds to take, also some nitroglycerin. and now that we're aware of it, we are working harder on eating better and he is trying to exercise more. what a wake up call. i wish we could have gone to the hospital on sat, but we don't have money laying around, and he just tried to deal with it. now we know we shouldn't have. thanks for all your thoughts!!
Thanks so much for letting me vent here in this safe place. Now I can pick up and go on again. I will keep you all in my thoughts.
(((Clare))) thankyou for caring. I know how frightening illness can be esp when you worry about how you can care for yourself. I will keep you all in my thoughts.
clare - YES girlfriend, we are here for you. not complaining, you are exploring and learning and we are listening! i am so sorry. it is so hard to cope with disabilities - esp new ones - alone. we are here for you. i don't know much abt sjogren's. do you have insurance? how do they test abt it, treat it??
mary - i am so sorry. yes, the fatigue is more than we can bear, isn't it?? i hope that you can let yourself sleep. a friend of mine with cfids sleeps 14 hours a day. i wish i could, my cfids is such that i have to take sleep meds to sleep. crazy, eh?? what can you take for pain?? did you ever try ultram? that worked for me for a while!!
you're right - it is so hard to give up our SELVES and adjust to the new self that our disabilities have forced onto us. i keep feeling like i should be the world-traveler that i used to be, the vibrant woman who had such fun doing things. now, i look at my smaller world and sometimes shake my head. i've grown used to it, i know it needs to be this way for me to not get sicker, but it sure is crazy.
candy - wow. i am so sorry you felt the need to go w/o your wheelchair, and then things got worse. yes, people's comments can cut to the bone. i don't care any more. i am too sick for it. but they do hurt, don't they? i am so sorry. what abt your husband - what is up next for him? your insurance situation pisses me off so badly. argh!!!!!!!!
well, ed carries his nitroglycerin around everywhere. thus far nothing yet, he says he has some phantom pains and aches bc he's thinking about it too much. of course. he can't do much exercise, etc...we swam in lake MI sat night and even the smaller waves wore him out. we can't do any testing until we get insurance. we can't afford it. we could barely afford to pay ourselves for the dr appt and the in-office EKG....sigh. our system needs to change, that is for sure. so hopefully next month we can get it going. i am so freaked out. his dad died at about the same age, when ed was 4. lillie's 4 now. we have to break this cycle!!! i can't live w/o him, that is for sure.
for myself, i am exhausted. we have one more weekend to go, down to my parents on the weekends to watch their dogs while they're in scotland. after next weekend, we'll have been gone 4 weekends in a row, bc we went up to our cottage for the 4th of july. it is really difficult for me, all this traveling and changing houses and etc etc. of course i would do it in a heartbeat for them, but still my body is complaining a bit! of course.
today i need to take it easy. the house is a complete pigsty. usually there are paths in rooms, but lillie's toys are so everywhere that there is no path. we'll see. it's been so hot and muggy that we've just been inside as much as possible. i am so grateful for AC....
i am so glad that we are using this group to help each other, and ourselves. love and hugs to you all!!!!
yes, please rest. hugs!!
i feel like crap. sigh. c'est la vie. i am so glad i can get in the water, though. it makes me feel alive, somehow.