I woke up this morning all swlled and stiff. My left elbow was stuck in the position I went to sleep with it in. I struggled to get dressed, I MEAN struggled. I was all sweaty and pissed off.
It just sucks! I went thru all the trouble of getting myself dressed, sitting around until 1pm and then I get down to where they are going to do the TEE, and I did not even get to have it done. They had already drugged me, only to wake me back up a few mins later.
There is this mouth guard they put in your mouth to keep you from biting into the endoscope. Well, when the nurse told me that I told her my mouth did not open but so wide because my jaw was inflammed. She got it out to test it, and nope it was 1/2 to big to fit between my teeth. She tried from the side and tried the wedge it in and it would no fit between my teeth. I told her maybe once I was asleep it might loosen up and then she could force it in. She said no, because it was made of hard plastic and she did not want to hurt my teeth in some way.
So... they knock me out and try without the mouth guard and I bit the endoscope and they aborted doing it all together.
So... no new answers, a waste of a day, I did not get my bloodwork done, hubby took a vacation day (for nothing) and I have dressed and undressed a total of 3 times already!
I am just annoyed and frustrated and I just want the Remicade. I am not doing well I have more pain and I am having trouble walking again, and I just want to be functional.
I just started crying on the way home because I just want to be fixed already heart wise & RA wise.
Oh crap! That is frustrating! Do they have any other suggestions on how to get a good diagnosis?
(Sorry I jumped the gun and asked how this went when I saw you post on another thread)
Nope, not that I know of. I have no follow up appt or anything else. I am just left on my own again, it seems.
I am so sorry - that is so frustrating and upsetting. I think I know how you feel. I hope tommorrow is a better day for you.
Laker
Oh and that stuff they spray in your mouth to numb your throat is AWFUL!
It tastes like nailpolish flavored poprocks that smells like bananas, and burns when you swollow it!
Some NASTY CRAP!
[QUOTE=simplesolution]I would hate to see you have to take such a toxic drug. It will only work for so long, the you have all the blood work, and the cost is so much each month. Then they add the MTX and and then increase the doses, then what? they don't have an answer. Go to the helen foundation website. They have a treatment process that doesn't have the side effects, it won't destroy the kidneys or liver, and it doesn't loose efficacy. Do some looking then e mail me if you have any questions. helenfoundation.com and
irsinaz@yahoo.com
Please think about it.
[/QUOTE]
Ummm yeah... HELL NO!
This was not for my RA, it just effects me not getting the meds I KNOW that WORKS for my RA.
So, butt out!
[QUOTE=simplesolution]no reason to be rude, only trying to help. those drugs are toxic and they will stop working. Hey if you would rather be close minded and ruin your body, not really having a chance to stop your disease. Go FOR IT.[/QUOTE]
I SMELL SPAM!
[QUOTE=simplesolution]really, if you don't agree, that is fine, but please leave me alone I have done nothing to you, and what the Helen foundation does works. You can't tell me that if money was no object and you had a treatment that was gauranteed, no side effects, the disease would stop, and in three weeks you would freel like a new person, that you wouldn't try it?
I have had this disease since birth... so... it is ruining my body, because I have went many years without proper treatment and I am now only 29, labled disabled by the government since I was 26. I have missed out on so much thru out my life because of this disease, and I no longer want to miss out, because now my RA effects my children.
I do not care if the meds I take have side effects, are toxic, or anything else... Just as long as they work... which I know the Remicade does.
So... you posting to someone's post, that is upset and crying because she has yet met another obsticle to getting better, and it not even being anything I care to hear. Then you deserve to be told off and be rude to.
So I am happy being close minded, ruining my body, and whatever else you claim.
Do not reply to any of my posts in the future. I do not care to hear what you have to say.
[QUOTE=simplesolution]no reason to be rude, only trying to help. those drugs are toxic and they will stop working. Hey if you would rather be close minded and ruin your body, not really having a chance to stop your disease. Go FOR IT.[/QUOTE]
Stop with the whole toxic drug spiel. I've had RA for 9 years now, taken a lot of different meds and have had little or no side effects. I exercise, eat right, my blood pressure is great and so is my cholesteral.
I'm not closeminded and my body certainly isn't ruined...I've been waterskiing this week, working in the garden, mowing the lawn and walking on the treadmill. All courtesy of one of those "toxic" meds...Rituxan!
I am happy Rituxan works so well for you, Lynn.
It really stinks what happened to you today Joonie, so sorry you had such a crappy day. They'll probably figure something out and give you a call. Keep pushing on girl, we here pulling for you.
take care
hubby said the cardiologist said some thing about doing an ultrasound of my heart, but I have already had one of those, and it showed nothing.
Yeah you would think they had one of those gaurds for kids, but the cardiologist asked the tech if there was an alternative for the mouth guard, and she no, but they could try it without the gaurd, just that there was the problem of biting the endoscope. and of course, i bit the endoscope, they were afraid i would get shocked if i bit thru.
no, no answers on the holter monitor yet. last one took them over 3 months to call me for the results of the first one.
iam off to bed i hurt, swelled and can barely move. going to call rd in the morning for something to help with this swelling & pain it is really bothering me.
Joonie so sorry to hear about your terrible, awful day. Hopefully your Dr will be able to figure something out so you can get some answers.
Joonie, I am so sorry. I too am biting my tongue on this one. You deserve better than this, as it sounds like the testing site wasn't prepared for a real patient. Joonie,
I am sorry to hear about your day and please know that you are in my thoughts and prayers...Hiking_gal
Joonie is there anything else you can take besides the remicade...plaquenil, sulfasalazine, imuran, methotrxate, arava etc....
If your infusions are going to be postponed you really need to be on something else besides pred.
Do you have any assistive devices to help you function when you aren't doing well
Yeah, I am on Imuran 100mg. the 200mg I was on when I first started it, made me feel weird so she dropped me down to 50mg 2x day.
RD was talking of putting me on anti-inflammatories, but she said the predisone was my anti-inflammatory. So.. she did not add one.
As for assistive devices, nope none.
I called RD's office and she is not in until Monday. UGH!
can you take MTX or arava?
an occupational therapist can help determine what items can be helpful for you but things like long handled hari brushes, dressing sticks , reachers help a lot when the arms don't want to cooperate
Joonie,
I'm so sorry to hear that you've had such a rough and frustrating day. I'd give you a big hug, but I've got problems too, w/the shoulders/elbows and can commiserate with the struggle it can be getting dressed to get to a medical appt. Have you tried a dressing stick, there's different kinds, with different size hooks on the ends, different thicknesses of the grip, they make getting dressed a little easier.
Rest up, take care, I hope tomorrow will go better for you. Gentle hug, Joy
Yep, MTX makes me hurt worse, and arava made my teeth soft and my hair fall out. So... RD put me on Imuran, as last resort. It works, but not as well when coupled with the Remicade.
Most times my hubby is home to dress me, except that day, he just met me at the hospital. MIL has helped me get dressed before, she is the one who usually takes me to appts when hubby cannot. I just have a really hard time, no matter how well I am doing, to get my sock on my right foot. It has to do with my right/hip/thigh crap.
My fingers have just been hurting more than normal, the last couple of weeks. It hurts just to type with some of my fingers, and there are a couple of fingers that are not sensitive to touch. It has been a while since I have had problems are problems with my fingers,hands, wrists hurting and swelling like they have been. It just makes one misrable. You have to decide if you want to cause yourself pain by picking up a cup or even turn the handle to the bathroom.
I hope I'm not bugging you w/my suggestions, but have you tried a sock aid? You can google it, or I can find a website showing one. I use one, cuz w/hips and elbow problems can't reach my feet, but most of the time I go without socks and wear slip on shoes - even in winter, thank goodness our winter's are mild.
Joonie, we really should be living in a place like Hawaii - where you can wear sandals, wear shorts or a sarong all year long. Aloha!
Oh, Joonie, I know I have only been on here for a couple of days, but I really feel for you. Reading your post has certainly helped me to put things in perspective. I hurt all the time, but atleast I am still able to do most things for myself. Please don't take offense if I say I am praying for you!
Oh yeah... forgot to say... I also got a bruise & sore throat outta the deal too!
Thanks for the prayers, carolinagirl. I can do many more things when I have Remicade. So, glad to hear you can do many things still. It gives hope.
Joie - thanks for the suggests, I will look into the sock one. That seems to be my most troublesome, other than pulling up pants & putting on bras LOL!
[QUOTE=joonie]
Joie - thanks for the suggests, I will look into the sock one. That seems to be my most troublesome, other than pulling up pants & putting on bras LOL!
[/QUOTE]
Too bad Boney wasn't still around
Yep, Boney would have the ole spotty butt butt scratcher that you use to scratch your back with
the sock aid really helps as Joie said. I think you would benefit from a dressing stick. while it is not perfect I wouldn't be able to dress myself without it. It helps me with bra straps, putting shirts over my head, taking off my socks. I have long handled combs and brushes otherwise I wouldn't be able to comb my own hair. I use one of the brushes to help my wash my hair. I even have an extender that has velcro so that I can attach a razor and shave my legs. Reachers allow you to pick things off the floor or reach things at the bottom of the washer or in the back of the fridge. If you go to an occupational therapist many of the items can be charged through insurance.
also, and you may hate to hear this but you really should think about using a cane when you are out and about. It will help take some of the pressure of the knee and give you a bit more balance as you are walking around Walmart
Yeah, I know. I did try to be nice to myself when we went to a wal-mart monday. I was going to get on an electric scooter, but the people greeter had no idea on how to work it. And I was already in horrid pain from the walk into the store. So, I gave up and went and found the bench. It pissed hubby off that the people greeter was not more help on getting the scooter to work. There were 4 electric carts and the people greeter did not even know how to get one of them to work. I did not have ample time to wait until he figured it out. So... I seeked the bench that I could see from where I was "standing" and plopped down.
My lower back has been spasming a lot, but does it more when I am all hunched over. It is awful pain, but if I sit it goes away.
I am not sure about the cane. When I hold stuff for any amount of time, my fingers, hands and wrists hurt and feel really weak. I might borrow my brothers cane to see how it goes.
I was thinking of asking one of my docs to refer me to Pain&Torture (PT), but undecided which one to ask... neurologist, GP, or RD.
But is there a way to put socks on? I have resorted to my 3year old putting them on for me Well, if your 3 yr old aint available to help ya w/your socks, try a sock aid, see link. I think I got mine from this site, but there are a lot of sites that sell this and other assistive aides, others here may recommend other mail order websites or perhaps try a medical supply store, they may carry them.
There are different styles of sock aids, mine is like this one, its flexible. Anyways, check it out, could be helpful.
I checked it out. How much strength or more like grip do you need to be able to pull?
Most times when I cannot get my socks on is when my fingers and hands are swelled to the point of not being able to make a fist or touch my fingers to the palm of my hands. And my fingers are very sensitive to touch stuff or move them.
The other times when I cannot get my sock on my right leg, is when I cannot minipulate a way for me to reach my foot.
I wonder if I can try one before I buy it?
It might not be returnable, you'd have to ask the website vendor. Or, call around to some of the medical supply stores, they probably sell them, and you could check it out in the store.
You don't need a lot of strength, and if your hands are tender and swollen, you can loop the loop at the end of the pullie thingies around your wrists or forearms to pull up.
Joonie, if your insurance would cover it, consider seeing an occupational therapist. They can be very clever and helpful in figuring out ways to help us RAers with challenging tasks, plus they are very knowledgeable about all the aids and gadgets and could match your needs with the best devices.
Take care. Gentle hug, Joy
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