Is travel a problem? Liver enzymes?

About ten years ago, I was diagnosed with SLE. I have had it for twenty years at least; it just went undiagnosed and I struggled through numerous health issues. I was young; now I am 60! My maternal aunt died of SLE at 59. I am not able to work, after doing so for 35 years. I live alone, have no children and my family consists of a nephew and his two children.

In the past, per my doctors, I have taken prednisone (starting at 40 mg tapering down to 5 mg over a two week period), when I needed to travel due to several emergencies plus one vacation. After the prednisone was stopped, I would be exhausted. I was then placed on a maintenance dose of 10 mg per day, then 5mg. After about a year my hair thinned, and my face became puffy. I then weened myself off steroids. In emergencies (e.g. going to a funeral), I have prescription adderall (amphetamine) which I now use occasionally. However, I know this is something I must be careful with.

Now, I avoid all overnight travel as I fight exhaustion and pain which are getting more intense with time. Just packing my things (and meds and supplements!) is hard on my brain when I am stressed. Traveling just makes everything worse including a urinary urgency problem. Also, I now avoid all pain killers (prescription and over-the-counter) as my liver enzymes have been elevated.

My primary care doctor has stated that if I have another lab panel with a liver issue, I will need a liver biopsy. This has been an ongoing problem over the last several years; I have had two sonograms which were normal after elevated liver enzymes. I take the herb Milk Thistle and it helps, and am now taking a maximum dose.

In six weeks, I am scheduled to attend my boyfriend's niece's wedding in a city about four hours away. This will be a huge affair, and my gut instinct says that I should opt out from attending (although I RSVP'd yes) due to my health issues. Just getting there will wear me out. His family has been very kind to me; we have been seeing each other for over two years. I know my boyfriend will be very disappointed if I do not attend, yet I must always try to "honor my body" and do what is best for my health. They all know I have SLE, yet they comment on how good I look---aren't all "Lupans" familiar with that statement!

In the past, I have told my boyfriend that he may want to get a healthy girlfriend and he gets upset because he doesn't want a new girlfriend.

Any feedback is greatly appreciated. This site is the best.

The liver enzyme issue is an important one... IMHO you may want to request that your doctor go ahead with the liver biopsy, because autoimmune hepatitis (aka AIH) is common in lupies. I have AIH, and the statistics for untreated AIH are dismal: 50% mortality rate after 5 years, 90% after ten years. Now this is for completely UNTREATED AIH... the thing that worries me is that you keep weaning yourself off of steroids, and have not mentioned whether or not you are using any other immunosuppressants such as Imuran, Cellcept, etc.

I assume you keep weaning off pred because of the side effects, and the fact that it makes your face puffy, etc. But I'm afraid you may have to put your health ahead of your appearance, hon. Staying alive is WAY more important than how you look. Please consider going back on a low dose of pred to help with your exhaustion and liver enzyme issues!

I started on 40 mg of prednisone and 100 mg of Imuran in 2008, now have tapered down to 4 mg of pred and 1000 mg of Cellcept. I cannot go lower on the prednisone dosage without my liver enzymes rising and my lupus flaring. I hate being on prednisone, but have no choice if I want to live.

Best wishes to you!

JoAnn

I have autoimmune hepatitis controlled, until recently, with prednisone and Immuran (azathioprine). My liver enzymes have been very high recently. I work closely with the liver specialist (gastroenterologist) and my rheumy. Both agreed that the problem is I've been taking lots of antibiotics for infections.

It also makes me concerned that you weaned yourself off prednisone without working with your doctor. This to me is akin to a diabetic not taking insulin. There are other drugs that can be used instead prednisone.

I've been unable to travel for 3 years, due to danger of blood clots, a lung infection and a lupus flare. I can't even take a crowd or a night club even though I rested and exercised all day. A car trip poses the same dangers.

I hate prednisone for what it's done to my body. Now only my face is left. I'm one big bruise. Having 4 autoimmune diseases, being alive takes precedence over beauty.

Please, take care of yourself. Include your boyfriend in a decision whether you go or not.

Bless You

Thank you so much for your responses. It tales energy and time to participate here and I am grateful to you for suggestions and perspectives.

I did not take myself off prednisone. My rheumatologist weened me off. I do not change my meds without consulting my rheumatologist. I did not like the physical and the horrendous mental aspects of prednisone. I do not take any immune suppressant meds. I tried several in 2008 and they made me so deathly ill that I could not get out of bed....nauseous and could hardly walk across the room. I have taken Plaquenil for six years without problems.

I am going to ask my rheumatologist about lupus hepatitis. And my primary care doctor as well.

I know there are so many of my fellow lupans out there with much worse scenarios.

Thank you for listening.

Oh, you are sweet to be generous enough to want to do things with and for family, and extended family. You know however, by your own admission, that you have to "honor your body" first as you put it. This is a two-sided coin (aren't they all?), and sometimes we do things that we know full well have a cost to pay later. Take everything into consideration though... your present condition and treatments, the circumstances you will be exposed to, and any current responsibilities to yourself and others. One thing to take VERY seriously is the triple threat flu seasons we're in the middle of right now. A new strain of respiratory flu, a new strain of Norovirus, AND the worst Pertussis outbreak in 60 years is not to be taken lightly. My mother recently travelled to Oklahoma (from CA so it was air travel) for an aunt's funeral. I won't lie to you, I fretted and I still am because she's only been back a few days. She'll be 73 in a couple of months, and my dad is 5 yrs older. He has health conditions of concern with his heart and such. It could be devastating for either of them to catch something. My mother also works fulltime. I know it was an emotional decision for her. I respect her decision to go. I am still cringing though.

I think the suggestion to go ahead with a biopsy might be something to consider. If there has been this much concern, it sounds like you need more defined answers. It's not something I have had to face, but my liver was enlarged for a few years (normal now) and I know just that thought of something being wrong is a tremendous stress that is hard to ignore.

Regarding steroids.. and any other med that you might still be on that suppresses the immune system, weigh that in the light of the afore-mentioned flu season. If your immune system is being quashed by anything, you're at an increased risk and travel makes that nothing short of scarey. Even if you go by car, at a social event you are exposed to everyone there AND everything and everyone they have been exposed to in the last 2 weeks (this flu has a lengthy incubation period of I think around 10 days). I don't mean to come off alarmist and doomsday, but I'm going for realistic. You have to ask yourself how serious it usually is, or would be right now, if you did contract a virus. That's the reality.

I know you said that you don't take any suppressant meds, but Plaquenil should be addressed here. It is not technically an immune suppressant. Technically steroids aren't either because it is a side effect, not it's primary purpose. Plaquenil does however attenuate down the response of the receptors, and over time it tends to lower your white cell count. Mine is a little low after only 2 years on it. It's just something to be aware of. That is what the medication is supposed to do - reduce the immune response reactiveness - but there are some negative potentials in that as well. It doesn't stamp out your ability to fight things off the way that steroids do, no. It does however regulate in a way that could make you a little more vulnerable. Just take that into account.

My mother made a valid point in her decision-making process that I do understand. It's even something that I frequently apply to my own life choices. You can't be afraid of everything or ever doing anything, but it does still have to be balanced with wisdom. So you do have a lot to think about. Your gut should tell you what the right things to do are. If it's screaming at you "don't do it", then it should give you pause. You know yourself better than anyone else. In this case it's really not about conquering a fear in some type of challenge. It's about making sure you don't make yourself unnecessarily ill. Make a choice that you know you can live happily with and go from there. If you go, take all the precautions necessary and stick to a plan diligently. #1. is always take care of you.

Just curious why are you not seeing rheumatologist for your liver problem? and you can take pain killers some work completely off your kidneys and others the liver. You need to use ones that work off being cleaned out by your kidneys.

My husband has hemochromatosis which is too much iron in your blood...but you have elevated liver enzymes and other liver problems. Like lupus it can attack any major organs in your body and can be missed by many doctors from what I am reading on support group posts..sites for it like this one for lupus. I would get tested and you might eventually needed liver biopsy .my husband did and most all people on support site seem to also have one. It is not pleasant so ask to be put into twilight zone. It does run in families...it is genetic. My husband's siblings all got tested and not one other did have it which is unusual.

I personally think you should try to go since this is very important to your bf. I know you need to put your body first....and there are some things you can do so at the wedding you can do just that. Like if reception is being held in nice hotel book room in same hotel so you can go up and rest. If not book a room in hotels as close to reception as possible so you can go and rest as you need too.

Sure you bf will do all the driving....plan on time to stop every hour and let you get out and walk and stretch your legs....drink fluids during the entire drive...yes you will need to stop to go the bathroom but that is good since you can let your legs stretch and move.

I had this same situation last summer with my niece's wedding who means a lot to me. They also did somethings like made sure there was parking near the wedding so neither of us..since my husband's ankles are destroyed from the disease. We did bring chairs since sitting was said to be limited and i did not want to keep bothering them as weddings are stressful....but they had chairs reserved for us as well and in shade. If it out doors...i have some very large nice straw hats with 6 inch brims so my entire face is covered as well as shoulders. I get this sunscreen that has zinc oxide in it so it is thick and takes about half hour to soak in...but it has stopped rashes even in car..where i tend to get worse ones. Isabella catalog carries excellent sun protection that they try on themselves before offering . but sure you have sun block that already works by now for you.

I would add good extra hour to drive or half hour so you can drink fluids all the way down plus stop about every hour to go bathroom plus stretch your legs. Do not starve yourself either try to stick to your normal eating times so your body stays on as normal schedule as possible. You can nibble at reception if it has full meal and you are not that hungry at that time.

Do not drink alcohol...i save small portion of champagne for toast if i am feeling okay if not i do not.

But at my niece's wedding....wedding was nice...but where they had reception was normally a wine tasting room...large room. Friends have winery and let them have use of it to be married in garden area than reception in this large room. It was extremely noisy and my poor mom could not hear me even across table and i had hard time to hear her. Noise like many of us have said just really made me start to feel sick....and i noticed with all these people they had only two bathrooms...if i get sick one is going to tied up with me until i can get well enough to get home to even my parents house or friends. So I did end up having to leave after the meal because it was just too much noise plus...but if yours in a place with room upstairs than i would have just gone up there....and rested a bit with my husband than come back down.

Plus if you spend the night and ask for room not at end of hall but in middle will be quieter since you do not hear fire door slamming shut or opening all night...you should be okay i would think.

Bring all your meds plus any extra that you might take if you do get sick. I just have bag that all of them go into....but just make sure you have place to go rest if you need during the reception time. Make sure your bf will fine with you needing to rest during it and he might be left alone...but since it is his family he should be okay.

I have found main key to keep drinking fluids, water, juices all day and resting as i need too. Even if i go on plane....i get more drinks than they offer and yes you have to get up and go bathroom but walking is good for us as i get stiffen up once i sit more half hour...there are those compression socks but if you do stop every hour to walk a bit etc...than you should be just fine.

I hope you try and go...as it does mean a lot to your bf. They give ups so much for us due to our diseases that i try hard to go when it means a lot. Also...if you feel stressed etc....your doctor might you one or two low dose as possible of of lorazepam it is weak version of Xanax and help you relax or sleep on way down even.

GOOD luck on going...also i hope you are off pred pills and hope you are getting regular bone scans by now since sounds like you have been on it off and on for while. Pred pills can do more damage to your kidneys than any otc is going to do to your liver...so you should check out serious side effects of it...plus my brother at age 30 had bones of someone in late 60's due to pred pills..i also was getting weaken so i stopped letting them prescribe it unless in very serious situations..life /death kind. There are other drugs...also your body can stop producing it so you should also have test...takes almost all day by endocrinologist to make sure you are still producing it.

Making your face get the 'moon' is nothing compared to all the damage it can do internally to your body ...so please be cautious using pred pills...and see specialist for your liver problem to get to the bottom..i hope you do have good time at the wedding!

Yes, agree with siskiyousis to seeing specialist. Best specialist to see is a hepatologist, but if you live in a small town or even a medium size city there may not be one near you. A hepatologist is a liver specialist, and is actually a type of gastroenterologist, just a little more specialized. So perhaps you could find a good gastro to help you figure out what's going on.... ?

Take care!

JoAnn

Oh my !!! am so afraid to take a vacation !!! Am not sure what is going on with me - my stomache hurts so bad sometimes and i votomic some times . Hope that you get help with this soon, take care and wish you well ,( far as this LUPUS can come when it want to )-smile !!! talk with you later ...Beverly L.

Hey.. some pills have done that too me. NSAIDS.....i took so much motrin i now cannot take any of those or have bad stomach pain....and did find small bleeding ulcer. Which has healed...but lyrica if don't eat a meal i will get nauseated and some times puke it up....sevella never could take just kept puking every time no matter with food or not.

It is another reason to keep pills down to as little as possible...they damage our stomach and other areas...but woman hand endoscope on another lupus site and they found inflammation of stomach which is common from people who take nsaids...and easy to fix with prescription ant acids but sure must be stronger ones...sorry i do not recall actual medical term but tell your doctor...or i take otc ant acids as well as my prescription one...and i eat Greek yogurt plus that type jaime lee curtis pushed...it does help..as well as probiotics liquid yogurt to make fruit/veggie drinks with ...and seems to calm it down. But i would call your doctor of course just in case. OR pharmacist might help if it is one of your drugs. i am sorry...it really hurts...also if you vomit blood...so look call dr asap or early next day! that is how i knew i had something wrong.

Beverly L. said:

Oh my !!! am so afraid to take a vacation !!! Am not sure what is going on with me - my stomache hurts so bad sometimes and i votomic some times . Hope that you get help with this soon, take care and wish you well ,( far as this LUPUS can come when it want to )-smile !!! talk with you later ...Beverly L.

I was having better liver enzyme reports while taking the Milk Thistle. My liver specialist opened his eyes wide and as emphatically as he could be, said that this substance does not help the liver, but creates false test results. I did go through the biopsy, and I have NASH (Non Alcoholic Steato Hepatitis) in its third stage. Four is the final.

Airlines usually adapt to patients' needs if you call them ahead of time. Many medical suppliers bring you whatever equipment and the supplies you need to wherever you stay when you call them ahead. When I arrived at the hotel, all my breathing equipment and supplies were already in my room and hooked up, ready to be used.

If you travel, include a day upon arrival to crash and reboot your system before the wedding. I do not do it often, but I have traveled, keeping into consideration my needs, and planning ahead, and have enjoyed my trips.

Latina, that's interesting about your liver specialist and Milk Thistle... my hepatologist told me to take Milk Thistle, that it DOES help the liver! :)

Latina said:

I was having better liver enzyme reports while taking the Milk Thistle. My liver specialist opened his eyes wide and as emphatically as he could be, said that this substance does not help the liver, but creates false test results. I did go through the biopsy, and I have NASH (Non Alcoholic Steato Hepatitis) in its third stage. Four is the final.

Airlines usually adapt to patients' needs if you call them ahead of time. Many medical suppliers bring you whatever equipment and the supplies you need to wherever you stay when you call them ahead. When I arrived at the hotel, all my breathing equipment and supplies were already in my room and hooked up, ready to be used.

If you travel, include a day upon arrival to crash and reboot your system before the wedding. I do not do it often, but I have traveled, keeping into consideration my needs, and planning ahead, and have enjoyed my trips.

Tala,

What a thoughtful and helpful reply. You gave me so many great tips and info I wasn't aware of. I am grateful for your feedback!

LupanCatwoman



Tala said:

Oh, you are sweet to be generous enough to want to do things with and for family, and extended family. You know however, by your own admission, that you have to "honor your body" first as you put it. This is a two-sided coin (aren't they all?), and sometimes we do things that we know full well have a cost to pay later. Take everything into consideration though... your present condition and treatments, the circumstances you will be exposed to, and any current responsibilities to yourself and others. One thing to take VERY seriously is the triple threat flu seasons we're in the middle of right now. A new strain of respiratory flu, a new strain of Norovirus, AND the worst Pertussis outbreak in 60 years is not to be taken lightly. My mother recently travelled to Oklahoma (from CA so it was air travel) for an aunt's funeral. I won't lie to you, I fretted and I still am because she's only been back a few days. She'll be 73 in a couple of months, and my dad is 5 yrs older. He has health conditions of concern with his heart and such. It could be devastating for either of them to catch something. My mother also works fulltime. I know it was an emotional decision for her. I respect her decision to go. I am still cringing though.

I think the suggestion to go ahead with a biopsy might be something to consider. If there has been this much concern, it sounds like you need more defined answers. It's not something I have had to face, but my liver was enlarged for a few years (normal now) and I know just that thought of something being wrong is a tremendous stress that is hard to ignore.

Regarding steroids.. and any other med that you might still be on that suppresses the immune system, weigh that in the light of the afore-mentioned flu season. If your immune system is being quashed by anything, you're at an increased risk and travel makes that nothing short of scarey. Even if you go by car, at a social event you are exposed to everyone there AND everything and everyone they have been exposed to in the last 2 weeks (this flu has a lengthy incubation period of I think around 10 days). I don't mean to come off alarmist and doomsday, but I'm going for realistic. You have to ask yourself how serious it usually is, or would be right now, if you did contract a virus. That's the reality.

I know you said that you don't take any suppressant meds, but Plaquenil should be addressed here. It is not technically an immune suppressant. Technically steroids aren't either because it is a side effect, not it's primary purpose. Plaquenil does however attenuate down the response of the receptors, and over time it tends to lower your white cell count. Mine is a little low after only 2 years on it. It's just something to be aware of. That is what the medication is supposed to do - reduce the immune response reactiveness - but there are some negative potentials in that as well. It doesn't stamp out your ability to fight things off the way that steroids do, no. It does however regulate in a way that could make you a little more vulnerable. Just take that into account.

My mother made a valid point in her decision-making process that I do understand. It's even something that I frequently apply to my own life choices. You can't be afraid of everything or ever doing anything, but it does still have to be balanced with wisdom. So you do have a lot to think about. Your gut should tell you what the right things to do are. If it's screaming at you "don't do it", then it should give you pause. You know yourself better than anyone else. In this case it's really not about conquering a fear in some type of challenge. It's about making sure you don't make yourself unnecessarily ill. Make a choice that you know you can live happily with and go from there. If you go, take all the precautions necessary and stick to a plan diligently. #1. is always take care of you.



Lupancatwoman said:

Tala,

What a thoughtful and helpful reply. You gave me so many great tips and info I wasn't aware of. I am grateful for your feedback!

LupanCatwoman



Tala said:

Oh, you are sweet to be generous enough to want to do things with and for family, and extended family. You know however, by your own admission, that you have to "honor your body" first as you put it. This is a two-sided coin (aren't they all?), and sometimes we do things that we know full well have a cost to pay later. Take everything into consideration though... your present condition and treatments, the circumstances you will be exposed to, and any current responsibilities to yourself and others. One thing to take VERY seriously is the triple threat flu seasons we're in the middle of right now. A new strain of respiratory flu, a new strain of Norovirus, AND the worst Pertussis outbreak in 60 years is not to be taken lightly. My mother recently travelled to Oklahoma (from CA so it was air travel) for an aunt's funeral. I won't lie to you, I fretted and I still am because she's only been back a few days. She'll be 73 in a couple of months, and my dad is 5 yrs older. He has health conditions of concern with his heart and such. It could be devastating for either of them to catch something. My mother also works fulltime. I know it was an emotional decision for her. I respect her decision to go. I am still cringing though.

I think the suggestion to go ahead with a biopsy might be something to consider. If there has been this much concern, it sounds like you need more defined answers. It's not something I have had to face, but my liver was enlarged for a few years (normal now) and I know just that thought of something being wrong is a tremendous stress that is hard to ignore.

Regarding steroids.. and any other med that you might still be on that suppresses the immune system, weigh that in the light of the afore-mentioned flu season. If your immune system is being quashed by anything, you're at an increased risk and travel makes that nothing short of scarey. Even if you go by car, at a social event you are exposed to everyone there AND everything and everyone they have been exposed to in the last 2 weeks (this flu has a lengthy incubation period of I think around 10 days). I don't mean to come off alarmist and doomsday, but I'm going for realistic. You have to ask yourself how serious it usually is, or would be right now, if you did contract a virus. That's the reality.

I know you said that you don't take any suppressant meds, but Plaquenil should be addressed here. It is not technically an immune suppressant. Technically steroids aren't either because it is a side effect, not it's primary purpose. Plaquenil does however attenuate down the response of the receptors, and over time it tends to lower your white cell count. Mine is a little low after only 2 years on it. It's just something to be aware of. That is what the medication is supposed to do - reduce the immune response reactiveness - but there are some negative potentials in that as well. It doesn't stamp out your ability to fight things off the way that steroids do, no. It does however regulate in a way that could make you a little more vulnerable. Just take that into account.

My mother made a valid point in her decision-making process that I do understand. It's even something that I frequently apply to my own life choices. You can't be afraid of everything or ever doing anything, but it does still have to be balanced with wisdom. So you do have a lot to think about. Your gut should tell you what the right things to do are. If it's screaming at you "don't do it", then it should give you pause. You know yourself better than anyone else. In this case it's really not about conquering a fear in some type of challenge. It's about making sure you don't make yourself unnecessarily ill. Make a choice that you know you can live happily with and go from there. If you go, take all the precautions necessary and stick to a plan diligently. #1. is always take care of you.

Lupancatwoman,

My husband is from Salt Lake and I am from San Diego...we live smack dab in the middle. What I have done to make it more comfortable is that I basically turn my seat into a bed. There is a neck pillow that looks something like a "dog bone" but boy is it comfy. I also have a couple of pillows that have those little white beads in them so that if I need to place them between myself and the window or door (just make sure you lock it, lol) they just mold to you. Comfy blanket, pillow under my feet and I actually sleep most of the way. That said, my husband does stop every hour, which is important so that you can stretch your legs.

This serves two purposes, first you are comfy and second you are rested when you get there. I refuse to allow this disease to confine me to my house...goodness without working I get awfully tired of seeing these walls.

Please take care of the liver enzymes. Many of us have enzymes that fluctuate, sometimes from the meds but sometimes from other issues.

You asked for suggestions, and my dear here you will find many, all meant with the best intentions.

I must agree that this site is the best...I do hope that you will enjoy it as much as I have.

Hugs,

DeAnne

DeAnne,

Thank you so very much for your ideas regarding comfortable travel. Plus, just your thoughts and experience.

This is second time I have posted a message and the response has been unbelievably good. The first time I was asking about Benlysta (several years ago) which I tried and it didn't help at all.

I completely understand what you mean about staring at the walls, yet I have been in bed so much that I feel like I have lost years in a fog of pain, fatigue and subsequent depression. It's been a real battle and often I have wondered who was winning!

All the best to you!

Lupancatwoman

When I get depressed, I wait until night time and go outside and look at the stars. Or, take my waltker and walk a little from my sidewalk to the one across my house. Just go outside, anywhere. Getting out of the house helps me from the boredom of looking at the walls (I do too).

Hello Lupuscatwoman,

Regarding your liver i highly suggest what "JoAnn" as put forward for you...as our liver is highly precious to we...i've got a tumour on mine besides it working overtime to keep up with my tegretol and ontop of that my sjogren's keeps shrinking my organs...so please react on getting it sorted.

Regarding flights you keep taking and how you feel with your mobility...have they ever mentioned if you have Antiphosphospholid syndrome known as Huges syndrome reagrding your blood and clotting as this is very important to known where Lupus is concerned where your going on flights besides, so i'd ask about that also.

Sounds to me you have a loving boyfriend who apreciates you dearly and although you think the wedding day will be to much, which it can be with what we suffer and what you've explained...why not attend in a wheelchair as there's many members who are in them when need be including myself.

Large hugs Terri xxx

Hi, there are lots of great tips here. I’ve found that travel & getting out is so good for my mental health - I fear the after effects, but I don’t want to be ruled by fear. That said - I take it really really easy on myself when I go, and I only go with friends/family who won’t expect more than I can give.

Sleep or meditate in the car. During the event, listen to the conversations & music - don’t feel obligated to chitchat. Have an escape plan at the wedding reception and dinners (can you take a cab back to the hotel if you’re pooped or is there a back room to lie down?). Stay overnight or two, that makes the stress of packing worth it, and order room service! Clear your schedule for the day you get back home so you can recuperate. Smile the whole time :slight_smile: and experience the joys around you.

Great input RB and especially great reference regarding the wedding if Lupuscatwoman attends :)

RB said:

Hi, there are lots of great tips here. I've found that travel & getting out is so good for my mental health - I fear the after effects, but I don't want to be ruled by fear. That said - I take it really really easy on myself when I go, and I only go with friends/family who won't expect more than I can give.

Sleep or meditate in the car. During the event, listen to the conversations & music - don't feel obligated to chitchat. Have an escape plan at the wedding reception and dinners (can you take a cab back to the hotel if you're pooped or is there a back room to lie down?). Stay overnight or two, that makes the stress of packing worth it, and order room service! Clear your schedule for the day you get back home so you can recuperate. Smile the whole time :) and experience the joys around you.

RB,

Great advice that I will use myself. It's important not to let this disease interfere with LIFE! Sounds like you are taking it on like a champ :)

XOXO,

DeAnne

RB said:

Hi, there are lots of great tips here. I've found that travel & getting out is so good for my mental health - I fear the after effects, but I don't want to be ruled by fear. That said - I take it really really easy on myself when I go, and I only go with friends/family who won't expect more than I can give.

Sleep or meditate in the car. During the event, listen to the conversations & music - don't feel obligated to chitchat. Have an escape plan at the wedding reception and dinners (can you take a cab back to the hotel if you're pooped or is there a back room to lie down?). Stay overnight or two, that makes the stress of packing worth it, and order room service! Clear your schedule for the day you get back home so you can recuperate. Smile the whole time :) and experience the joys around you.