Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Good morning all.
I am on babesia treatment of mepron and biaxin.
Last week, my fourth week of treatment, I was off mepron for one week.
It was a very bad week for me.....one that even though I went back on
Mepron yesterday doesn't seem to be getting better.
I know what it is.......a herx....with my monthly friend on top of it.
My Dad called last week to speak with me.
I thought I did okay with the conversation, but apparently he didn't.
He called my sisters and said I wasn't doing well.
Tried to speak with my younger sister a couple of nights ago.
I struggled. I couldn't find words. I couldn't remember what we were talking about.
I kept wanting to end the phone conversation as it was so frustrating for me.
She didn't want to.......I guess really worried about me.
When I got off the phone, I cried and cried.
How in the world can I do a Speech Therapy interview if I can't find words.
Plus, I think it is the first time my family that lives away
Has ever heard me struggle that way.
I tried to explain herx....again couldn't find the words.
Part of me is depressed and resigned to my temporary fate...
The other part thinks.....well family....what do you think I've been struggling
With for the last year and a half???!!!!
When I get the lectures of you need to go back to work and I say
I can't just yet.....as I still struggle sometimes to talk,
I get the "I have word finding problems too sometimes".
Sure you do.....I can be sued for malpractice for this problem.
Yesterday, I started this drunk walk where I feel like I have
To move to the left. I've run into walls, cars, etc.
Oh the joys of Lyme and company.
I know and pray this will pass.....but maybe, just maybe
It gave my family a "glimpse" of my life with Lyme and co-infections.
Even though they have never read about it.....and don't even ask
How I am feeling anymore (that novelty wore off a year ago),
Maybe my pathetic attempts at speaking did shine some light for them.
They are genuinely concerned (for the first time).
It is sad though. I hope and pray for better days soon.
Although I am so grateful to still be here fighting this fight.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
One side effect of bravely trying to be OK for family and trying to be everything for everyone all the time is that family and friends become inured to illness and basically forget there's anything wrong. So it's kind of a shock when you have a day bad enough not to FAKE your way through it.
A wakeup call!
You're the brave and uncomplaining kind. That might have been just what they needed to hear as you wage your silent war.
You go, Geneal. You amaze me with your giving-ness. (A word I just made up.)
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
I think some family members are scared...scared of the unknowed..they can understand that this is a bad DISEASE..they really don't think its a DISEASE at all...only our close family members even ask how he is doing..the others will say "after a year he still is not better"..then don't or won't to listen to any info about Lyme..so your are not the only one..take care and hang in there..when i read your story is all sounds just like what my hubby is going through
-------------------- madgen Posts: 342 | From newjersey | Registered: Oct 2007
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I also have that....and can't make complete sentences........I know what I want to say but the words just don't come out the way I want it to....
it makes me feel so incredibly stupid.....
I'm sorry with what you are going through with your family......but maybe this hard time for you is what they need to see.....or hear.....
i too try to put up that front...... in fact my husband just said the other day.....
...."next time we see any family......don't put make-up on..."
basicaly telling me to look bad.....
anyway....I hope things brighten up for you and this herx will fade quickly.....
thinking of you, mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Geneal,
You have helped me get through rough spots just by being there.
Hoping this rough spot smooths over soon for you.
This darn disease. At least you would think it would come with some kind of gage so we would see those symptoms coming ahead a time...
...Like...a yellow flashing light....watch out walls coming your way today...
....or brain on blink....use TDY today. Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Thank you all so much.....
There is so much about Lyme and co-infections that interfere with
How we function...or don't.
I know that this too shall pass.
I just hope my speech and language get better....
I just can't imagine not doing a job that I've done for over 17 years.
Plus....the money wouldn't hurt.
It is just that my complaints of having difficulty have
Been pooh-poohed so many times. Discounted as normal.
I usually avoid people and conversations because like you said,
I feel stupid....frustrated....and scared at times.
I used to be in command of a varied and wide vocabulary.
I can still think it (which is language), but can't pull it for the world.
Sometimes I laugh about it.....certainly has given me new insight into
How stroke patients feel.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
I remember, for some reason, the one thing that made my family stand up and take notice that I was, in fact, truly ill is when I lost my voice and could not speak above a hoarse whisper for about three weeks.
The paralysis from the neck down, the constant collapsing to the floor, etc. didn't do it for them.
For some reason, it was losing my voice that made them wake up. I don't get it, but that's how it went.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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Sorry you are having frustrations, but glad your family is starting to see things aren't as they seem.
Mtree, I always say even a dead man can look good in make-up! Much of this illness is silent suffering, and symptoms that others have also, so they can't "get it".
My sister recently was enlightened to our plight and had a lightbulb moment. She says she can't believe we've been going through this for over 2 yrs and she is just now getting it. She was a big pusher, thinking if my daughter would just "try harder" she would get better.
I'm not sure what straw broke the camels back, but so glad she understands better. She is a big help now and our line of communication.
Hope some good things come your way. Don't suffer silently too long without checking in with doc... I'm always afraid to bother him, but he personally returns most calls.
Hugs to you!
MommaK
Posts: 242 | From Mississippi | Registered: Oct 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
G...
It is frustrating not being able to get the words out.. but I can't imagine how you deal with it knowing what you do for a living. It must be 10 times as hard hitting for you than most. So sorry.
Looking at it from another point of view may help?
I use to do public speaking with audiences of several hundred people at a time.
Then I got to a point where I couldn't organize the talks.. or even speak the words. No one understood this problem if they didn't know me personally and few knew how bad I had gotten.
Even though I was no longer doing talks... I would still get requests. Many of them were to do a program on Lyme disease.. which I had done for a good while. I knew no one else was doing them so I hated to miss the chance to educate others.
I got so rattled even thinking about doing them though, by the time I had to do it I was a nightmare... a complete fizzled out freak.
One day I was feeling really bad and was scheduled to do a program... against my better judgement.. but I had a hard time saying no to friends... and folks were driving a LONG way to hear me speak.. so I couldn't back out.
When the time came I sat down in front of the audience (big no no) and rather than trying to hide the problems I was having... which was sooooo stressful... I started out talking about them.
I explained how the Lyme had affected my brain and speech and that I use to be able to stand for an hour, all spiffy and pretty, and present a formal program.. and rarely had notes even to go by.
But I told them... now I can't.
I told the audience that I had to go slowly that day... might not comprehend their questions.. and may stumble on answers.. but if they were willing I would be able to continue in that fashion with that understanding.
It was horrifying to have to do a program like that for me.. but you know what...
Once I accepted it and shared with them rather than try to hide it.. I was closer to them and they understood.
In your job perhaps YOU having had the same experience many of them had... will make it better for everyone? Do you think so?
Or, you can go around thinking you are the doe doe Dork of the county and think everyone is pointing fingers at you. And you can stress over it till you make yourself sicker.
Your choice.
And I know so well that it is hard to make that leap.. but I also know you can do it if you want to. Let some of that pride go and adjust to your situation.. just like you so wonderfully teach others to do.
posted
How well I remember those days of careening and slurring and struggling just to get from one thought to the next, one moment to the next, one recliner to the next.
"We must be willing to let go of the life we planned so as to have the life that is waiting for us." - E. M. Forester
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I am a Speech Pathologist/Speech Therapist.
My concern is that I will probably go to work back in the public school system.
That will allow me to keep my children's schedule.
I can't imagine sitting with a parent, who trusts my expertise
And judgement and not be able to articulate/formulate
What I think their child is exhibiting and ways to address the problem.
I don't think that would be a confidence booster for any parent
Who believes you really know what you are talking about.
I am going to wait a couple of weeks prior to calling and setting up
An interview......like most things this I am sure will pass....eventually.
Thanks for all the positive words....I may be down, but not out yet.
Maybe it is not in the cards for me this Fall....maybe in January.
I am going to pray about it and see if the doors open for me....or not.
If not......I have thought about disability as I speak/teach for a living.....
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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I have not been on the site very long, but I do see how you are so caring and give people encouragement. Now you need to stay positive.
I can not speak from a Lymie point of view, but I see how frustrating it is for my wife at times...
I am a big believer in positive thinking. I know at times it is hard, but it makes you feel better if you can do it.
You will be able to go to work again. You will get better. You have much to give to people.
Have some chocolate!! Posts: 39 | From NJ | Registered: Feb 2008
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Cobweb
Unregistered
posted
I can identify with your situation because I have been unable to work for the past two years.
I am currently waiting for an "analyst ability" report to figure out where or how I want to re-enter the workforce.
I know I will not be able to go back to the job I lost due to Lyme Disease-however, like you, it is important that I do something that will make a difference in people's lives.
I was feeling discouraged knowing I would not be able to go back to hands on direct service-but I realized I could still make a difference-just in some other way.
I also need to be able to work at my own pace or I know I would crash and burn real quick.
You know so much in your field-how else could you put that experience to use? Seems like you would make a great compassionate counselor,too-perhaps for the very stroke victims you identify with?
Just wanted to let you know that this is an issue I am working through too.
I have come to a level of acceptance that I cannot provide direct services to the population of children I worked with-so I'm trying to figure out how else I can make a difference.
tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
I can relate completely! I think because I don't look that sick (so I'm told), even though I feel that I look like a different person, people think I'm milking this.
I think everyone thinks I'm not working b/c I'm lazy. On the rare occasion that someone actually asks what's up with me, my husband and I now say I have Neurological Lyme Disease. It seems to strike a different chord than just saying Lyme.
I've noticed when I say Lyme most people think I just have some aches and pains. If my family would take some of their precious time to at least look up Lyme Disease maybe they'd understand a little better and I wouldn't have to explain myself so much.
Posts: 2541 | From Northeast | Registered: Jan 2008
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quote:Originally posted by Cobweb: [QB] "We must be willing to let go of the life we planned so as to have the life that is waiting for us." - E. M. Forester
That's a good one!! Geneal, I am glad your family finally gets it. Do be warned that they MAY blame it on your current medications.
I sincerely hope not!!!! Just giving you the heads up so you can be ready for that one!
Hang in there, kiddo...It gets better. Just takes a lot of time.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Geneal, it will get better. Hopefully once you get on the upper climb of this illness. It would be very hard for you to do your career job with the difficulty you are having.
I'm taking adult education classes to try to learn something new. If it was lyme disease studies, I might be able to remember some of it. Especially since I've lived it.
I'm very behind and going to have to pay to take the classes again. But that's okay. Maybe I can learn it? I'm pretty sure I can? I like the material, actually I love it. But I must be able to retain this info and some days are very hard to retain stuff.
I have lots of short term or long term memory lapses. I struggle with words and remembering things all the time. I've just learned to laugh about it. My family and friends understand I struggle sometimes to remember something or say something. They laugh with me.
It doesn't hurt so much when you laugh. I usually cry with frustration only with my Mom and my hubby on really sucky days.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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It is sometimes a bumpy journey full of potholes and red lights... There are green lights ahead. And angels here to hold your hand, comfort you and pray for you all the time.
(That's what you told me) Look at all the Angels!!! carly
Posts: 797 | From New York | Registered: Feb 2008
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I am so blessed to have all of you...
I am the first in my family to go to college and graduate (the last one expected to )
And thus far, the only one with a graduate degree.
I worked so hard for those things.....I am still paying off my grad school loan.
I know I can probably be a better therapist now that I can empathize
Rather than sympathize on how difficult speech and language problems are.
As well as swallowing.
Maybe this is part of God's plan.....so that I can bring more of myself
And my experiences to work with me.
My Dad is coming to see me next week (joy of joys ).
I know he loves me, but......he drives me crazy most days.
Hon.....you need to do this....Hon....you need to do that....
Hon....you're going to lose your skills if you don't keep in the game.
I think I am going to open a lemonade stand this summer......to do something with
All of these lemons coming my way.
Anybody else up for a glass of cool, refreshing, full of hope lemonade?
You guys are the best of the best....I feel like I know each and every one of you.
You know me better than most of my family.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Cobweb
Unregistered
posted
You don't happen to have red hair-do you?
"Watch out for competing lemonade stands" Cobby said tartly.
posted
Geneal, I'm so sorry to hear that you are having such a rough time. I used to work with speech therapists (I was an early intervention coordinator prior to having my girls) and my heart goes out to you.
I wish I could offer more than my prayers... I know that better days are coming for you. Just hang on and keep making that lemonade. Posts: 237 | From Rhode Island | Registered: Jan 2008
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I find myself trying to protect some family members. Eventually, i couldn't anymore and learned its not in MY best interest to not let them see what really happens.
My dad, bless his soul, asks me everyday how I am and i am honest with him. If i say bad he gets upset.
If i say good, he acts like its over and now we can move on! Of course he usually gets disappointed within the next couple of days again.. From him i learn my optimism
My friend at work says she knows when i am going to call out by the paper work and emails i send her-gibberish!
BTW, I sometimes have the "walk to the left" thingy too?!!! What the heck is that?
Well, i hope you feel better. We are such better people for the painful road we have had to travel. this is our destiny
Posts: 368 | From freehold, nj | Registered: May 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I have no idea where the left walk thing comes from.
I usually adjust well, but I am definitely clumsier when I get this.
I've never really ever been graceful. Where some people can just
Ski and such, I have to work on my center of balance.
Kind of fits my blonde hair.
An incredibly diverse group of people....with the common thread being
Illness or loving someone with this horrible illness.
However, I couldn't of hand picked a finer, more supportive,
More encouraging or educated group.
When I prayed for an answer I found Lymenet.
That led me to my LLMD.
The blessings keep coming from here day after day, herx after herx,
Month after month. I am so grateful.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Oh Geneal, this is just awful!
I'm so sorry you're going through this.
Had you been taking any other meds besides the Biaxin & Mepron? I think Mepron can possibly interfere with some antidepressants and cause the balance & speech issues.
I had stuff like that happen to me when I was Txing Babs and I was on Effexor. It was REALLY frightening. It did stop after I got off the Effexor, though. (It also had happened with missed doses of Effexor)
I hope this passes quickly for you. I'll keep you in my prayers.
Hugs & Prayers, Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Cobweb
Unregistered
posted
Watch this video-it's sure to turn your frown upside down!
just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Geneal,
I am sorry you misunderstood,,,,I am NOT coming for a visit!! --dear old dad--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Now Don.....that would be a visit I would be eagerly anticipating.
My Dad's wife is some type of distributor for some bra making company.
I had a message on my answering machine the other day.
Geneal.....I need to know your bra size....I have a free one for you.
I am 42 years old......Please don't bring me a bra.
I'd really rather not discuss this with my Dad.
I've managed to elude him for some time now....just 'cause he just
Doesn't get it....or me....or my life.....
I know he loves me, but sheesh! I'd love him more if he kept the bra for himself.
I swear.....He has Lyme too.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Hi Geneal,
Having had lyme all my life, I chose a profession where I don't have to talk much, just listen and be still.
I do counseling and energy work. I had to give up most of the counseling, except for the people who don't want to be counseled, and just want to talk. The energy work keeps me healthy, and I've gotten better at it due to my illness.
I never used to know why I'd get in front of a group of people, go to speak, and nothing would happen, even when I thought I knew what I wanted to say. Thanks to you, now I understand it a whole lot better.
Now I find that I'm rarely at a loss for words, but still have a major phobia about public speaking.
In any case, the word search issue does get better. You'll get to go back to work and do what you love when the time is right. Sounds like you have a really good LLMD, and you are on your way.
Family. Sheesh. My father asked me once how I was doing. Sometimes I tell him when he doesn't ask, but I don't think his hearing is so good.
I hope your father's visit is as pleasant as can be hoped for. And I hope the worst of this herx is passing by.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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Cobweb
Unregistered
posted
quote:Originally posted by just don: Geneal,
I am sorry you misunderstood,,,,I am NOT coming for a visit!! --dear old dad--
Is it because your tractor got a flat or the cow kicked the bucket?
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
No....I can't take minocycline. True vertigo for me.
I really think this is a babesia herx as balance issues have flared doing this
Treatment as well as increased air hunger, heart palpatations and night sweats.
Did I mention night sweats? Yikes!!!!
I have to change the sheets daily.
Which means I have to wash sheets daily....my favorite thing to do....laundry.
I made it through Wally World this am. Held on the the basket for dear life.
Really hard when a 45lb almost 5 year old holds it and keeps it going in a different direction.
My goodness, have prices gone up!
Thanks oil companies.
I'd be rich if I didn't have to eat, buy supplements or treat Lyme.
However, I am richer in friends and love, which is what really counts in life.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
Explore medications? to treat the speech problem.
After I had "finished" my lyme antibiotic treatment and had been retrained by state vocational rehabilitation I went to work as a substance abuse counselor. I was so sleepy. I yawned all the time. I lived to sleep. I went home early and worked part time to sleep.
I didn't realize I had speech problems. I was put on ProVigil for the sleepiness and it was a miracle. Can't work without it. For 4 months 2 years ago, I had to go off it (insurance). I began to have real speech problems. I knew what I wanted to say. Like the words were in my head but I couldn't get them all out, or out in order. It made a problem with pausing (not to think, just, well if you are a speech person you understand) much worse. Instead of "There is a woman on the phone inquiring about our adolescent program. Can you take the call?" It came out as "Woman, phone, adolescent!" To my new type A boss. I felt incredibly stupid and out of control. Somehow, the ProVigil affects the speech center and hasn't cured my speech problems, but I am functional. (that is except when on Lyrica & clonazepam 'generic for klonopin') I'm off work now because my peripheral nervous system has been progressively damaged (again) and I have had pins needles and pricklies. I worked for over a year, fighting it. But I see now that the med's make me, for lack of a better term, stupid. I can't go back to work that way. I am 4 weeks into the 6 weeks I was grudgingly given. I am terrified of jumping back into the molten lava that created this problem. I can't do it.
-------------------- Lyme is like the flu. You can get it and recover, but you can always get it again. Posts: 607 | From (deer tick)Heaven! Angeles National Forest | Registered: Oct 2000
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bettyg
Unregistered
posted
my dear friend, geneal,
i'm so sorry i'm behind in my reading posts not being on lymenet for 5 days except 20-30 min. daily since i was answering pms/questions during my 1 hr. at library.
wow, you've been thru the mill, but your family is FINALLY GETTING IT with your recent speech problem; good! and hopefully, it will last longer than a day or 2.
don, i loved how daddy dear was coming to visit G!!! what a delightful sense of humor you have.
cobweb carol and geneal, **********************
each of you brings something just SO SPECIAL to this board, and the humanity is 1st class accommodations on your reaching out to others hurting like there will be no more tomorrow.
geneal, i think the last time i read about you the SLAB OF CONCRETE HAD BEEN POURED, RIGHT? WHAT'S happening now?
better days are ahead, and geneal ... you will get your speech back; you are a BORN LEADER helping the lambs of this earth survive!
i was just picturing your dad in a bra!! of course, it has to be a DOLLY PARTON SIZE or it doesn't count!
geneal, you/family SURVIVED KATRINA; all of you in the small trailer with all those dogs; you are a BORN SURVIVOR, with a special gift of making everyone feel good during their deepest, darkest days/nights.
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Hi Geneal. You have been there for me in some of my most desperate times last year. I hate to hear you are having these hard times.
My llmd prescribed for my family a "nutritional supplement" that is prescription only, and has been shown to help alzheimers (sp?) patients. It helped me a lot with word retrieval.
With that said, I'd like to say that my husband just did not get what lyme was doing to me until he got lyme... unfortunately.
Yet, he still, from time to time, talks about "when" I go back to work, which fills me with sadness. And then he looks at me with an apology on his face.
I got my Master's Degree and was teaching college English when I became too ill to work. I've been out of the work force for ten years now, but not mostly because of memory issues, but pain and fatigue.
I will keep you in my prayers and hope you see improvement.
Mary in Switzerland
Posts: 1032 | From North Carolina | Registered: Aug 2003
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I actually took the cerefolin...but it made me feel really weird.
I really appreciate and feel humbled by all of your responses and support.
Thank you so much....Speech is getting better except when I am dead tired.
Has to be part of my babesia herx. Fun, fun, fun.
Thank you all so much for your kindness and consideration.
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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