Back from the rheumatologist - AARGH?!
#249242 - 02/28/06 04:03 PM
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lalala
Reged: 02/14/05
Posts: 2634
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Well, let's just say I wish I could drop-kick something. A doctor, maybe?  I'm just kidding! I'm not a violent person, really, but I am frustrated right now.
On the bright side, we went over my bloodwork - everything was normal, so normal in fact that I was smack dab in the middle of all the various ranges. Only one test came up a little on the high side, and that was the TIBC (total iron-binding capacity). He said this woudn't affect my health, and it's probably due to the BC pill I'm on. He asked if I was on a iron supplement and I said, "Nope. I don't even eat red meat!" (So, there you go, you can get all the nutrients you need on this diet!  )
He went through my symptoms asked me if anyone in my family has RA. My father and maternal grandmother have RA, possibly an aunt, so that increases my risk but doesn't mean I'll get it. Today was a good day for me, so I didn't have a lot of pain or swelling; only my toes hurt and he said he could feel swelling in those joints. Because I didn't have any swelling or inflammation anywhere else today he couldn't make a diagnosis. This is where it gets frustrating - if I had come in a few weeks ago, when I was having the noticeable swelling he might have been able to see what's wrong. But for some reason, today my body was fine. (That was this morning, now I'm getting the swelling and stiffness again.)
I told him that I didn't know what to do anymore, because obviously and according to the tests I'm healthy. I'm really happy about that, but it's frustrating to be missing so much work, so much life, because of those days I do experience symptoms. I told him that because no one can find anything wrong, I'm wondering if there's something wrong with me. I know I have anxiety issues but they don't really seem to affect the stiffness, pain, and swelling one way or another. He was very kind and said that just because he couldn't find the signs or markers of a problem that didn't mean my symptoms were merely in my head.
He said it just meant he couldn't find anything wrong with my joints and that was a good thing because it meant my body isn't doing damage to itself. He said that sometimes you can only make a diagnosis when an autoimmune disorder is active and right now, today, if it is an autoimmune problem, it was inactive.
He sent me for more bloodwork to check for other autoimmune disorders (one for Lupus, a new test that can check for RA in its early stages but can also give you a false positive). I was too upset to write down the names of those tests, but I have an appointment to see him again in three weeks. Next week I see my PCP to go over the lab work again and do a med check.
Thanks for all your support everyone! I'm feeling kind of down right now, you know, frustrated and confused. But I know how fortunate I am that all my blood work came back normal and to know that I really am healthy.
Edited by Maria! Maria! (02/28/06 04:43 PM)
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My rheumatoid factor test wasn't back yet, but he seemed to think it would just come back negative. 
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Anti-CCP
http://arthritis.about.com/od/radiagnosis/f/anticcp.htm
(Okay, I'll stop replying to myself now. Hee hee. )
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that sometimes a person needs to talk to herself if she wants to have an intelligent conversation. 
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But I know how fortunate I am that all my blood work came back normal and to know that I really am healthy.
Well, I wouldn't feel that way. I wouldn't want something bad or chronic or serious, of course, but if I felt sick all the time, I'd want something in my blood work to be way out of line.  I was always so glad when I felt awful to go to my endocrinologist and have her say, "Yup, we need to up your Synthroid again."
This may be a dumb question, but as far as your rheumatologist needing your symptoms to be active in order to make a diagnosis, could you just call your rheumatologist on a bad day and say, "Hey, I'm having a terrible day. Can I come over right now?"
I'm sorry you still don't have a diagnosis, Maria.  Let us know how the tests come out.
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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Quote:
that sometimes a person needs to talk to herself if she wants to have an intelligent conversation. So true.
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But I know how fortunate I am that all my blood work came back normal and to know that I really am healthy.
Well, I wouldn't feel that way. I wouldn't want something bad or chronic or serious, of course, but if I felt sick all the time, I'd want something in my blood work to be way out of line. I was always so glad when I felt awful to go to my endocrinologist and have her say, "Yup, we need to up your Synthroid again." That was me trying to be positive. It sounds so canned, doesn't it? I spent a good amount of energy swearing up a storm after the visit and decided to balance it out with something positive.  Really, I would love it if a doctor said, "It's so simple and easy to take care of! I know exactly what's wrong with you!" And it would be nice if he/she added an "A-HA!" at the beginning just for fun.
This may be a dumb question, but as far as your rheumatologist needing your symptoms to be active in order to make a diagnosis, could you just call your rheumatologist on a bad day and say, "Hey, I'm having a terrible day. Can I come over right now?" That's a good question. When I was waiting to get my bloodwork done my fingers started to swell. I considered running back to the rheumy's office to show him...I'm going to ask my doctor about that. Or maybe I should do something before I go in that usually causes a flare-up - like scrubbing the tub or something.
I'm sorry you still don't have a diagnosis, Maria. Let us know how the tests come out. Thanks, Sand. It'll be a few weeks before the results for those newer tests get back, but I'll be sure to update.
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It's kind of weird. Here my doctors want me to see a rhuemy doctor because of possible autoimmune problems and I don't have any symptoms but they seem to think something might be there while you have symptoms and your doc's don't think anything is wrong. (sigh) To me it's just a big pain in the butt sometimes to deal with your health. Again I truly believe you have to be an advocate for your own health and body. Good Luck with everything Maria. I hope you find some answers!
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Hugs sweetie!! I know how frustrating it is to be sick and for the dr's to not know whats wrong. And why does it seem that our bodies are always on their best behavior while we are at the dr's office but as soon as we leave, they act up again! I would definitely call them the next time your having a lot of swelling and just say, I need him to see me like this now! As I mentioned before, you can have RA without the positive blood test but it is hard to diagnose, especially if there is no swelling on examination. Have you tried taking Advil when it hurts? It seems to take the edge off a bit for me and physical therapy does seem to be helping also. Hang in there, I hope you gut some answers soon!
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Taking it one day at a time.....
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This sounds SUPER frsurating! Did you ever call the doc and find out if you can just come in and show him how inflammed things are when you have a flare up? I like the idea of doing something to make things flare before your next appointment (I just hate that you have to go through pain to get properly Dx!! )
How are you doing today? Yoyu mentioned that you were swelling up yesterday...has it gone down yet? *hugs*
Sending you lots of love and continued strength and courage on your journey on the road to answers and recovery *hugs*
Lots of love,
Sarala
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Formerly known as Ruchie
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...is pretty good. I'm still waiting to have that one. 
Sounds like RA to me. You ever had Psoriasis???
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I'm not sure how often you check these boards anymore...but thanks for taking the time to pop in here and reply. How are things going with you? I hope you're feeling better. Are you still in a flare-up?
No, I haven't had psoriasis. Is the citrulline test also known as anti-CCP?
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I'm not sure if anyone is still keeping up with this...I barely am!
I tested positive for the RA factor, positive for ANA, and positive for another test (the anti-CCP, I believe - I'm not sure because I didn't get a copy of the results). I saw the results and we went over the scores and what they meant, but so much was going through my mind I don't remember everything that was said.
BUT, I still don't have a RA diagnosis because... Well, I think it's because the positives weren't positive enough? And because my sed rate is normal, which confused my doctor.
I see the rhuemy in two weeks to go over these latest results and then he can diagnose me or decide to do more tests or take a wait-and-see approach. That's sort of how my doctor explained it.
I'm so confused, but I believe I probably am in the early stages of RA.
Hey, do ya think exercise will cure it? 
Edited by Maria! Maria! (03/08/06 11:34 PM)
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If you tested positive for the RA antibody AND have joint swelling and pain, its a pretty safe bet that you do have RA! Be sure to stress to the rheumy about the swelling, even if it isn't present that day. The swelling in my hands varies from day to day as well. I saw my rheumy this morning in fact and, I guess luckily, they were VERY swollen. From all the research I've been doing, everyone recommends treating it NOW. If you take the wait and see approach, irreversible damage can be done in a short period of time. Most of the DMARD (I think thats the acronym they use) drugs will take 3-6 months before they start working, why wait until your absolutely miserable before you begin them. You want to slow the progress down NOW as much as possible. Sed rates are used to try and measure the amount of inflammation in your body but they are not real accurate.
I opted for the placquenil but there are several other drugs that will slow the drug down as well. I can't remember what your "child bearing" status is? Several of the other drugs they use for RA are not compatible with pregnancy but placquenil can be taken while pregnant. Also, the positive ANA test, that's the Lupus test, can be a big issue when trying to get pregnant.
I know you were joking about the exercise however, do know that even when your hands are swollen and sore, you do need to keep them moving. If you "baby" them too much, you can lose a lot of range of motion and mobility! Someone suggested to me the hot was treatments and they really do help! You can by the wax machine and wax at bed, bath and beyond for like $40! I've been going to physcial therapy for several weeks now and they actually gave me this ball of silly puddy like stuff that I'm supposed to squish with my hands and fingers to try and keep the joints lose and moving.
Please keep us posted!! I know your probably over whelmed right now but I'm so glad your seeing the rheumy dr again soon! Hugs!
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Taking it one day at a time.....
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Well, at least you're getting somewhere. Even if no one asked you if you wanted to go. You mentioned in another post about doing something like scrubbing the floor before your next appointment, to bring on the swelling -- this is an excellent idea, maybe if the rhuemy actually sees the swelling he'll be more inclined to actually diagnose you.
So is fibro still a factor? Or if it is RA does that mean you don't have fibro? Or could you have both like Michele? I hope not.
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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What did he say about the positive ANA? Because that is the lupus test. I know mine came back positive but it was speckled and at a low titer. So the rheumy doc said because I didn't have much joint pain I probable don't have Lupus. Isn't crazy how these tests can say they are for one disease but the minute you test positive and don't have certain symptoms then there are a ton more tests they have to do to rule it out! I am going through this right now and it is frustrating!!
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I'm not even going to pretend to follow all the tests you're talking about, but it sounds like your doctors are hacking away at the underbrush. Frustrating, scary, maddening, and way too slow, but unfortunately necessary.
Please remember you can ask for help. Your freemate (aka, significant other), siblings, parents, and friends can go with you to see doctors and get tests. Sometimes having someone else with you can make everything go easier, especially if it's just one more test or doctor visit too many. Also, having someone else there to hear what's said means you don't have to remember it all yourself. Even better if your companion drives, so you can just be a lump until you get there.
Take care.
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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I've had offers from friends, family, and my partner to go with me, but I was just so used to doing things on my own I didn't take them up on it. You're right. I need to be a lump sometimes! The drive is long (same city where I work, so almost an hour away) and it would be great not to have to worry about the drive. So, I'm definitely having someone else come with me to my next rheumy visit.
Thanks, Sand!
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Quote:
If you tested positive for the RA antibody AND have joint swelling and pain, its a pretty safe bet that you do have RA! Be sure to stress to the rheumy about the swelling, even if it isn't present that day. The swelling in my hands varies from day to day as well. I saw my rheumy this morning in fact and, I guess luckily, they were VERY swollen. From all the research I've been doing, everyone recommends treating it NOW. If you take the wait and see approach, irreversible damage can be done in a short period of time. Yes, I don't want this to happen. My PCP didn't seem to know much about RA or what the best treatment options are, but after meeting the rheumy he didn't come across as the type of doctor to wait for it to get worse. Most of the DMARD (I think thats the acronym they use) drugs will take 3-6 months before they start working, why wait until your absolutely miserable before you begin them. You want to slow the progress down NOW as much as possible. Sed rates are used to try and measure the amount of inflammation in your body but they are not real accurate.
I opted for the placquenil but there are several other drugs that will slow the drug down as well. I can't remember what your "child bearing" status is? I'm not planning on having children. I've been with my partner for ten years and we both don't want children. OF course, I don't know how I'll feel five or ten years from now, so all I can say is that I'm not trying to get pregnant. Several of the other drugs they use for RA are not compatible with pregnancy but placquenil can be taken while pregnant. Also, the positive ANA test, that's the Lupus test, can be a big issue when trying to get pregnant.
I know you were joking about the exercise however, do know that even when your hands are swollen and sore, you do need to keep them moving. Yep, I have heard this. My piano teacher had RA so bad that her fingers were crooked. She kept playing the piano and had one of those hand ball things you described. If you "baby" them too much, you can lose a lot of range of motion and mobility! Someone suggested to me the hot was treatments and they really do help! You can by the wax machine and wax at bed, bath and beyond for like $40! I'll have to check this out! My fingers are always cold too, so the heat sounds very nice. I've been going to physcial therapy for several weeks now and they actually gave me this ball of silly puddy like stuff that I'm supposed to squish with my hands and fingers to try and keep the joints lose and moving. I think I'm going to get one of these this weekend.
Please keep us posted!! I know your probably over whelmed right now but I'm so glad your seeing the rheumy dr again soon! Hugs! Michele, thanks for taking the time to share your tips and wisdom! I don't know what I do without all you guys!
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Angela -
She didn't say much about the ANA test, other than it was positive and she couldn't remember enought about it to interpret it. So, I'll have to wait and see what the rheumy says about it.
It is a lot of tests, but I'm just glad they're finally listening to me and trying to figure out what's been going on with me. A little over a year ago, I went to see a doctor (my PCP's partner) to talk about these same problems. She gave me a rectal exam (even though my IBS was stable at the time and not an issue), made me do squats and push against her arms to check my muscle strength. She told me I was "really strong" and then told me to see a nutrionist and take a multi-vitamin! "I'm not going to give you antibiotics," she said. When I told her I didn't want any and that I didn't see how vitamins would help the joint and muscle pain, she said, "What do you want me to do for you?" Aargh! It still makes me angry. I let my doctor's office know I didn't like her and to not schedule me to see her when my regular PCP was out.
Sorry to go off about that, but it still bugs me!
You know, even though I'm confused right now, I feel hopeful. It's good to see that my doctor and rheumatologist are working together in order to help me. And neither one of them has even assumed that the pain and fatigue might have to do with depresssion. I feel like they're really listening to me and respect me.
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Quote:
Well, at least you're getting somewhere. Even if no one asked you if you wanted to go. You mentioned in another post about doing something like scrubbing the floor before your next appointment, to bring on the swelling -- this is an excellent idea, maybe if the rhuemy actually sees the swelling he'll be more inclined to actually diagnose you. Yep, that's the plan. I'm scrubbing the tub and cleaning the floors before my next appointment. At least, when I get home after seeing the rheumatologist, I can enjoy a clean bathroom!
So is fibro still a factor? Neither my PCP nor the rheumy have mentioned the fibro. I brought it up to my doctor, but she seemed to be thinking it was RA, which is why I was sent to the rheumy. Or if it is RA does that mean you don't have fibro? Or could you have both like Michele? That's possible. I'll have to bring it up to the rheumatologist next time I see him. I hope not.
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I know how frustrating it is to live in the land of limbo with inconclusive test results. No treatment plan because they aren't sure what exactly to treat.
The whole gluten, gallbladder test results have had me in limbo for some time now...as everyone knows too well by now. I wish I never had the stupid tests done.
But, I'm sure your doctor will give you a definite diagnosis. I wish you the best, sweetie.
I know it's hard to ask for help....but try to ask and don't keep apologizing for the inconvenience afterwards!
Keep us updated on the breaking news!
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Thanks for your support, Beth! I knew you'd understand, considering what you've been going through with the gallbladders tests and those confusing celiac tests! It would be nice to get a straight answer, wouldn't it?
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I was looking through our catalog and saw that we're ordering The First Year: Rheumatoid Arthritis. I've placed a hold on it. Not sure if you've read it yet - it just came out last year - but I'll let you if it's worth checking out.
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If they can't interpret a test, who the heck is suppose to? Isn't that why they spent tons of years in school/residency ? More like "How to confuse your patients as much as possible"? Or maybe it was basket weaving! 
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Thanks Maria!! I have not read any books on RA yet, just what I've found "googling!"
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Taking it one day at a time.....
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Oh my goodness! Will the doctors EVER get it together???
I'm sooo sorry you are going through all of this Maria! *hugs*
How are you doing? How are you handling it all? As far as I can tell you're taking it like a champ!!!
Of COURSE we are keeping up with it all!!! Keep posting and updating us on how you're doing ok?
Here's to hoping you get some answers in 2 weeks (or sooner!)
Love,
Sarala
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Formerly known as Ruchie
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Maria,
Sounds very much like the mixed bag that I am faced with. I too got + for RA, + ANA and have a sed. rate that is elevated, but not sky high. My rheumatologist is calling it lupus for now and does not rule out the RA diagnosis in the future. Do you swell up in the sun? Do you get random sore throats when you're not "really" sick? Do you feel like you should be in a nursing home some days because of the aches and pains? Do you have psoriasis? I just wondered how much if any the dr. talked to you about lupus. These autoimmune diseases are such a gray area it seems. My rheum. is a great guy and he will say things like "Well, whatever it is, I'm glad you've been doing better." Oddly enough, I am satisfied with that because I really, really to not want to go on DMARDS and maybe I am in denial. If my next round of x-rays shows any damage, I will seriously rethink my position on that, but so far no damage has occured.
Anyway, I can sympathise with being undiagnosed because I'm sort of in the same boat. What about Plaquenil? It is supposed to help all of these immune diseases. Did you talk about that with the doctor?
Mostly just giving hugs to you, Maria and hoping that you can feel beter soon.
Laura
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Re: Placquenil
#251150 - 03/09/06 01:26 PM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Is actually used for both RA and Lupus. I've been on it since mid January. I seem to tolerate it pretty well. They started me on 200mg a day for one month. The first 2 days or so I felt a little "off." Mostly jumpy and kind of wound up and unable to concentrate but it quickly passed. A couple of weeks ago, they increased it to 200mg twice a day which I will probably be on forever. Again, for a day or two I felt off but now I'm ok again.
The one concern with placquenil is that it can have serious affects on your eyes. You must have a complete, dilated eye exam once a year. As long as you keep the mg's you are taking to a certain ratio to your weight, than its very rare to cause eye problems but they like to have it checked to be for sure!
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Taking it one day at a time.....
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This is what I've been telling people. When I get a diagnosis, I'm going to throw myself a party - with cake, not pity!
So, I'm doing alright. I actually feel better than I have for a while - maybe not physically, but emotionally. It was great to read how well you're doing! Really, that made my day! I love hearing good news!
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Hi,
I also test positive for ANA, however my GI told me that that doesn't necessarily mean that I will get RA. He thinks that I tested positive b/c I already have some autoimmune things going on (I have ulcerative colitis and thyroid disease).
I hope your doctor is able to give you a more clear diagnosis.
Jenn
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Quote:
Maria,
Sounds very much like the mixed bag that I am faced with. I too got + for RA, + ANA and have a sed. rate that is elevated, but not sky high. My rheumatologist is calling it lupus for now and does not rule out the RA diagnosis in the future. Do you swell up in the sun? Do you get random sore throats when you're not "really" sick? Do you feel like you should be in a nursing home some days because of the aches and pains? Do you have psoriasis? No to everthing, except feeling like I should be in a nursing home. Sometimes taking a shower can be hard work! I just wondered how much if any the dr. talked to you about lupus. These autoimmune diseases are such a gray area it seems. No, they haven't brought it up at all. But I agree - it seems like autoimmune diseases are not only hard to diagnose but also difficult to differentiate. My rheum. is a great guy and he will say things like "Well, whatever it is, I'm glad you've been doing better." Oddly enough, I am satisfied with that because I really, really to not want to go on DMARDS and maybe I am in denial. If my next round of x-rays shows any damage, I will seriously rethink my position on that, but so far no damage has occured.
Anyway, I can sympathise with being undiagnosed because I'm sort of in the same boat. What about Plaquenil? It is supposed to help all of these immune diseases. Did you talk about that with the doctor? I haven't been to the rheumatologist since I got the test results back from my PCP. I'll be seeing him in two weeks and I have no idea what he'll say.
Mostly just giving hugs to you, Maria and hoping that you can feel beter soon. Laura, thanks so much for your support! I didn't know you were going through something so similar to what I've been dealing with. I hope you're doing well.
Laura
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Thanks for replying, Jenn. I'm hoping these latest test results will get my doctors on some sort of track that will eventually lead to a diagnosis.
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Hi,
I did not find anything about hypermobile joints. I know i have them. Maybe you might have them too. Actually there seems to be a connection between IBS and this syndrome. All due to weak connective tissue.
Good luck with everyhting!
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Well, I think I had another post announcing I was diagnosed with lupus back in March, but thought I should update here.
First of all, after reading up on lupus, I'm learning that a lot of the health problems I've experienced over the years are typical lupus symptoms. Also, those blood tests are pretty accurate and I'm responding well to Plaquenil. The IBS may or may not be due to lupus: the colon is made up of connective tissue which can be affected by lupus, but I also had a terrible GI infection immediately before the IBS started. Either way, I'm still following the IBS guidelines. I think if it wasn't for this diet, which is HEALTHY and IBS friendly, I'd probably be a lot sicker. So, thank you, Heather!
I've been on Plaquenil for over a month and this week the rheumy doubled my dose. No side effects! Yay! About a week or two ago, I started noticing that my skin was looking a lot better. Not as bumpy or inflamed. I've been more careful about sun exposure and have been using sunblock, so I think that's helping as well. I've also been noticing gradual improvement in other areas - my hands don't hurt as badly, I'm not as fatigued, a lot of my generalized pain and tenderness has been reduced. I never thought I'd see ANY improvement, so...WOW!
I ended up not applying for disability because I wanted to give this medication a chance. I did speak with my supervisor and she helped me adjust my schedule so that I could spread my hours out over four days, five hours each day. I'm still only working part-time, but I feel good that at least I'm still working! (However, this schedule also gives me time to continue writing and now that my brain fog has lifted I'm trying to take full advantage of this opportunity. So if I'm ot at work or on the boards, I'm typing away! It feels so good to be able to do what I truly love again.)
I think it's been almost two months since I had to call in sick to work. I still have some bad days, but now I see a light at the end of the tunnel. I went to a concert last week and spent the following day in bed because I was so exhausted, but that's still so much better than not doing anything and sleeping for 14+ hours/day for a week.
Some of you also know that I've been dealing with anxiety issues. I think a lot of this had to do with knowing there was something more to my problem than just IBS. The first couple of week after the diagnosis of lupus, I was feeling down and cried easily, but then I started feeling relief. At least I know what's wrong and I have my doctors' support in helping me get better. I'm seeing my PCP next month and I'm going to ask about getting off Buspar. I'll continue to take my 10 mg amitriptyline at night because I do think it's helping me sleep better and helping me manage the IBS and muscle/joint pain. One thing my doctor told me about drugs that are used in pain management, like benzodiazapenes (sedatives, anti-anxiety meds), is that they affect how you react to pain. I never considered the way in which I reacted to pain, but after she said that I realized that I do tend to go into panic mode when I start feeling pain. So now, I try to be more aware of what I'm thinking when the pain starts. Instead of assuming that it will become uncontrollable and I'll have to go to the ER again, I try to remember the last incident of pain, how I dealt with that, what worked, what didn't work, how bad did it really get. This actually seems to be helping!
In other life news, I sadly lost my aunt (through marriage) to colon cancer two weeks ago. Although I hadn't seen her in a few years because she lived in Spain, I have many fond memories of her and how well she took care of me when I visited Spain as teenager. Just this last week I learned that my step-father has cancer and yesterday he had a tumor removed. This has been a tough year for my family - we just lost my grandfather less than a year ago and I know that a lot of my family members thought they were losing me too because I was getting so sick. I'm very thankful that at least I'm getting better so that I can support my mom, since it was her father she lost and her good friend (my aunt), and now her husband is sick. I visited her yesterday and we had a good cry. My sister and I got her a gift card to Sephora for Mother's Day, which may seem a little superficial, but I think it will help her take her mind off some things to treat herself to some fun beauty products.
Anyway, I want to thank everyone for their support and well wishes and prayers. Thank you!
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