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Topic: Clusterheads Wife, New to site (Read 353 times) |
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donnalu
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Clusterheads Wife, New to site
« on: Aug 22nd, 2004, 10:54am » |
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Hi to everyone. Have been reading posts on this site for about a week or so. You guys seem great. Have been extremely helpful to me. My husband started getting CH while in high school. He is now 37. He hasn't had any CH's in 5 years, until 2 weeks ago. When they started 2 weeks ago, he had some Imitrex injections leftover, so he used them. Then he ran out of them. Oh my god! I finally saw and felt the terror he had described. We have been married for 2 1/2 years and he told me about the CH's, but I had never heard of them. Once the Imitrex ran out, the real terror began. I have never felt so helpless. There was nothing I could do to help him, and I had never seen someone in such pain. This was on a Saturday, and no doctor could see him, and he wouldn't go to the ER. So, he suffered all weekend. One headache lasted two solid hours. I cried with him, helpless. On Monday, we went to my family doctor. He gave us Axert to try, since we have no insurance. Well, they helped somewhat, but ran out quickly. Filled the prescription, (6 tabs), it ran out, filled the refill. The HA's still going on. I wonder if this will ever go away.
After reading so many of your posts, yesterday I went and bought some Melatonin, Magnesium, and B-50 complex vitamins. Gave him 400mg of Magnesium when I got home. A little later, he fell asleep and a bad CH woke him right up. He took an Axert and finally came out of it. Then I gave him a B-50 vitamin and 9 mg of Melatonin. He went back to bed about and hour later and slept all nite, and is still sleeping. Thank god he hasn't had one since last nite.
He has to go back to work tomorrow. He took vacation last week because of the CH's, hoping they would go away by now. No such luck. I can tell he is afraid to go to work tomorrow.
Just wanted to say Thank you all for all your help. I will continue to read and research in hopes of helping my husband. Good Luck to all of you suffering and God Bless.
Donna
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ex_pat_asia
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Re: Clusterheads Wife, New to site
« Reply #2 on: Aug 22nd, 2004, 11:33am » |
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Donna,
Reading your post I felt that you were pretty agitated and who wouldn't be. I am very sorry that you need to be here but this is the right place to be. I hope you might encourage your husband to become involved also. He will sense an enormous amount of support if he posts here and that support is a big help in feeling better. No one can chase away a cluster with words, but there will be inspiration on these boards and information to help him deal with "the beast" as we like to call it.
I gather that other then the melatonin and the vitamin and mineral supplement, Axert is the only medication he has tried since this cluster began. Axert is one of the triptan drugs, and can be very effective in aborting cluster. However, stopping an attack is half the battle. From your reading here you must have gathered that a treatment strategy is a two pronged approach. There are drugs used to prevent the attacks (or greatly reduce them) and then there are the drugs to abort the attacks themselves. Your post did not mention oxygen for aborting an attack. It is, in my opinion, the best option for many clusterheads. It is true that it doesn't help all cluster sufferers. In fact, it is true that even those of us who get relief from inhaling Oxygen during the attack, do not always successfully abort the attack. The attacks, as you know, can vary widely in intensity and duration. Your husband's two hour ordeal is a case in point. But the number of people that do get relief from Oxygen seems to be very high. It has the advantage of being natural and virtually unlimited as to how often it is used. It is not as portable as a vial of tablets or an Imitrex injection, but I have taken it in my car everywhere I went during some of the sycles I dealt with in the past.
There are several drugs used for prophylaxis, the most popular seems to be Verapamil. You will find several links to info about this drug and its effectiveness in cluster headache. Upon starting the verapamil there iseems to be a general consensus here that a prednisone taper should be started as well. The prednisone is used to ameliorate the attacks while the verapamil reaches a level of performance which, according to several posts here, may take two weeks. It may take longer, simply because Verapamil effectiveness can vary greatly from one patient to another, and the right dosage may take time to "dial in". You mentioned that you do not have insurance. Fortunately Verapamil, Oxygen, and Prednisone are all inexpensive. Unfortunately, the triptan drugs are extraordinarily expensive, and have restrictions as to the amount that can be used. Most cluster sufferes butt up against that dosage ceiling before the headaches go away or are reduced in number. There are other abortives, including ergotamine (cafergot) that can be effective for some cluster sufferers and will not break the bank. Sansert, is a faster acting ergotamine. There are recommened dosage levels for these drugs as well but if effective, there is more dosages available (in terms of the recommended dosages) then is the case with the triptan drugs.
Here is a link to a good summary about meds.
http://www.headachedrugs.com/archives/preventivemeds.html
There is a wealth of info here about alternatives that can reduce the pain or provide a way to deal. Suggestions like ice packs, meditation, hot showers, strong coffee, should not be discounted.
Finally, I note that the melatonin may have given your husband a night's sleep without an attack. This is pretty remarakable for the first time out as your post seemed to suggest. I'll be eager to hear if that success continues.
Again, very sorry that you have a need to be here, but am happy for you that you have found the site. Please post more info about your husband's case and progress.
Best Wishes to all for PFDAN
(I had one teeny little attack today to break my string of three days PF...but I am feeling more confident then ever. I got this cycle on the run I think)
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| « Last Edit: Aug 22nd, 2004, 11:43am by ex_pat_asia » |
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ex_pat_asia
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donnalu
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Re: Clusterheads Wife, New to site
« Reply #3 on: Aug 22nd, 2004, 12:17pm » |
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Thank you for your response to my post.
In regards to oxygen, I have a few questions. Is the oxygen prescribed from the doctor? If not, how can you get it?
Also, when we went to the doc on last Monday, I told him about what I read here about prednisone. He gave us a script for it, 10 mg 4 times a day. Steve has all but used up the script, but as I continue to read posts here, I find that the dosage described to most is much higher than 40 mg a day. Should I talk to doc about upping the dosage. Will this help? I also wonder how long should he take the prednisone.
During some of the HA's, we tried the Red Bull drink, didn't help, tried the ice pack, he couldn't take it, took a trazedone for sleep, didn't stop it, he has taken a old script of mylan, don't know if this did anything. I worry about giving him so much of anything. But he is trying everything he can get a hold of.
I am so afraid of these "beasts"! I want to help him so much, but am scared of him taking so many things and not knowing if it will help or hurt him. I don't won't to leave him alone because I've seen the pain that he goes through, and don't know what could happen if he was left alone. It is so scary. I have to leave here in a little while to go to my Restaurant and get ready for work tomorrow. Wish I could just stay here. But, being the owner, the Restaurant won't wait until tomorrow.
Thanks for helping me.
Donna
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FZfan
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Re: Clusterheads Wife, New to site
« Reply #4 on: Aug 22nd, 2004, 1:14pm » |
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Donna,
Sorry to hear about your experiences in dealing with the beast. You have definitely come to the right place for help and support.
Watching an attack from a supporter's point of view is probably nearly as excruciating as suffering through the attack itself, due to the complete helplessness a supporter feels. Believe me, the best thing you can do is whatever your sufferer asks, even if it is to be left alone.
ex_pat_asia gave you some great advice on meds and their usages. I really can't add much to that, other than to back up what he is saying about oxygen. I, personally, have found oxygen to be so effective at aborting my attacks, that I didn't take any other meds at all during my last cycle. But everyone's experience is a little different. I believe roughly 80% of the sufferers on this board find at least some relief using oxygen therapy.
Oxygen can be expensive if procured at a medical supply shop when you have no insurance. One e-tank, pretty much a standard medical oxygen tank, costs 100 dollars or more if you purchase it. Re-filling it at the same med supply shop costs 20 dollars or more. 1 e-tank only aborts 4 or 5 h/a's for me, so when I am in cycle I have to get my e-tank re-filled nearly everyday.
If these costs are too high for you, you should consider getting welder's o2. It is much cheaper and every bit as safe as medical o2. There are plenty of posts here on this subject and there are a few members here who are experts at getting and using welder's o2.
If you haven't done so already, read the oxygen info link on the menu to your left. Oxygen is only effective if it is used correctly. I know this from personal experience because I was using it incorrectly until I came to this marvelous place and learned the correct way to use it. The difference was startling.
Good luck in finding the relief for your husband you seek. The fact you are here researching for him is something he should be extremely thankful for. There are many spouses out there who don't or won't understand what this disease is or refuse to accept the fact the these attacks or so much more than just "a headache". Simply by trying to understand what he is going through, you are helping him greatly.
Stay in touch, let us know how it's going.
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ex_pat_asia
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Re: Clusterheads Wife, New to site
« Reply #5 on: Aug 22nd, 2004, 1:29pm » |
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on Aug 22nd, 2004, 12:17pm, donnalu wrote:Thank you for your response to my post.
In regards to oxygen, I have a few questions. Is the oxygen prescribed from the doctor? If not, how can you get it? |
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Yes, the Oxygen would normally be prescribed by a doctor and subsequently obtained from a medical supply. However, there are reports of Drs. being reluctant to prescribe it. If you run into that you likely have a Dr. who is not well informed. However, given that you do not have insurance there is another way for you to go. Try to make a contact with a welder's supply shop and see if they are willing to provide a tank of Oxygen. You would normally have to pay a deposit for the tank. Then get to a medical supply store and buy I full (face and nose) NON-REBREATHER mask. You might have to fool around with fittings to get the mask connected to the output valve on the tank. I don't know if you can get a regulator/flow meter from the welder's supply store. Someone else here may be able to advise better on this. Your looking for a way to regulate the flow to 10 - 15 litres per minute. At that rate, breathe deeply through the nose exhaling slowly, repeated in a rythmic fashion. (This act alone can be calming even in the midst of the pain). Coniue breathing until all traces of the headache are gone. The Oxygen should be started at the earliest sign of headache onset.
For me Oxygen sometimes simply delays the onset. That is to say that after aborting the start of an attack, it may come again in an hour or so. I occasionally take a cafergot att the same time I start the oxygen. This seems to prevent an early return of the attack.
By the accounts here you will see that the welders oxygen is safe to use. In fact, it is likely much more clean then the air we breathe each and every day. The reason Oxygen is often effective is that it saturates the blood, a condition that convinces the vascular system to constrict the heavily dilated blood vessels that are part of the physiology of the cluster itself.
Quote:| Also, when we went to the doc on last Monday, I told him about what I read here about prednisone. He gave us a script for it, 10 mg 4 times a day. Steve has all but used up the script, but as I continue to read posts here, I find that the dosage described to most is much higher than 40 mg a day. Should I talk to doc about upping the dosage. Will this help? I also wonder how long should he take the prednisone. |
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The following is from the web page I linked in my last post.
(Cortisone: Very effective for cluster headache; is used primarily for episodic clusters. It is given for 1 or 2 weeks during the peak of the cluster series. Prednisone, Decadron, or injectible forms may be utilized. When used for short periods of time, side effects are minimal. A typical regimen is prednisone (20 mg) or Decadron (4 mg) once a day for 3 days, then one-half pill per day for 10 days, then stop. Additional cortisone may be given later in the cycle, when the clusters increase. Higher doses may be needed."
I think that answers your question and it is "yes" a higher dosage may be in order. However, the lowest possible dosage is a favorable thing to try to acheive as it dramatically reduces side affects.
My personal choice of cortisone has been betamethasone. I liked it because it has a higher anti-inflammatory profile. I have arthritis and felt that I would kill 2 birds with one stone. It seems to have been very effective in both instances, reducing my attacks and virtually making my knee and wrist inflamation disappear.
Quote:| During some of the HA's, we tried the Red Bull drink, didn't help, tried the ice pack, he couldn't take it, took a trazedone for sleep, didn't stop it, he has taken a old script of mylan, don't know if this did anything. I worry about giving him so much of anything. But he is trying everything he can get a hold of. |
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I understand, these darn things do make you a bit frantic.
I can appreciate the urge to start gulping meds. I suspect that Red Bull could just as easily be a strong cup of coffee which can help somewhat. But I would avoid the sleep meds (except for the melatonin you mentioned earlier.) They can often aggravate the attacks, and make them worse. I would urge that you proceed on a more deliberate basis using the info you can glean here and on the O.U.C.H. site linked here. Get him involved in developing the strategy (both preventative and abortive)
I don't know who gets hit harder during my worse attacks...my wife ...or me. Well, I take that back. But I know she suffers anxiety when I am like this. We have a deal that she doesn't come into the room unless I call for her. When she is not with me it is easier for her to visualize the end of the attack, which ALWAYS comes. On a rare occasion I have an attack where having my neck rubbed feels good. I confess those are actually blessed moments because her concern and care really shine. However, most of the time I prefer to be left to my own devices. If this develops between you and your husband I urge you to not feel hurt and to follow his lead.
Best of luck and please keep us posted as how things go over the next few days.
PFDAN to all!
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| « Last Edit: Aug 22nd, 2004, 1:35pm by ex_pat_asia » |
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ex_pat_asia
"Work like you don't need the money,
dance like no one is watching,
love like you'll never get hurt" - Anon.
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ex_pat_asia
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Re: Clusterheads Wife, New to site
« Reply #6 on: Aug 22nd, 2004, 1:47pm » |
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on Aug 22nd, 2004, 1:14pm, FZfan wrote:
Oxygen can be expensive if procured at a medical supply shop when you have no insurance. One e-tank, pretty much a standard medical oxygen tank, costs 100 dollars or more if you purchase it. Re-filling it at the same med supply shop costs 20 dollars or more. 1 e-tank only aborts 4 or 5 h/a's for me, so when I am in cycle I have to get my e-tank re-filled nearly everyday. |
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You made me realize how fortunate I am with regard to Oxygen supply. Here in Kuala Lumpur, the distribution of medical supplies to the public is largely focused on bedpans and canes. They just do not get into the Oxygen business. I have to go directly to the manufacturer of industrial gases. Fortunately, they supply oxygen to all the hospitals and have developed a healthy reatail business. They deliver to our home a full tank which is larger then the E size seen in the states. They pick up the empty when they deliver a new full tank. The cost? -> 10 US dollars (equivalent) per tank total. When we purchased the starter tank it was around $80 USD. Not bad eh?
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| « Last Edit: Aug 22nd, 2004, 1:48pm by ex_pat_asia » |
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ex_pat_asia
"Work like you don't need the money,
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love like you'll never get hurt" - Anon.
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synergy
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Re: Clusterheads Wife, New to site
« Reply #7 on: Aug 22nd, 2004, 3:16pm » |
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Hi - so sorry you have to be here love but you are in the right place!
Im also a supporter and i know the pain you feel when your partner is going through this. It is heartbreaking to watch but my partner says that just having me sit next to him helps him through the attack as it is scary for him.
My partner has suffered as a chronic for 3 years now but we are still very happy together with a young baby - and we cope fine.
There will be days where you will feel down and depressed about it but then there are also the days where you can lift your head up to the beast and say "you are not going to win"!
If you ever need to talk about how you are feeling or for advice (well, for anything really!) then dont hesitate to post it or send a private message to me.
There are lots of other supporters on this site who are truly wonderful and also know what you are going through (as well as the sufferers).
The others have given all the advice on meds - i will add that in most cases of CH it is the patient and their supporter that have to educate the GP. Dont be afraid to print off some information and take it down to the GP - they may think they know everything but they dont!!
Keep posting and good luck - luv sarah xx
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BlueMeanie
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Re: Clusterheads Wife, New to site
« Reply #8 on: Aug 22nd, 2004, 4:57pm » |
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Hello Donna,
Welcome to Clusterville !!
Sorry to hear hubby is getting hit right now. It sounds like he's episodic which means attacks come in cycles. That is the good news as they won't last long hopefully. You may want your hubby to check out the site. Even though the other people have already given very good advise, sometimes it helps just to see there are others like him out there.
Good luck & sending PF vibes your hubbys way.
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| « Last Edit: Aug 22nd, 2004, 4:57pm by YOSIMITE » |
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karma
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Re: Clusterheads Wife, New to site
« Reply #9 on: Aug 23rd, 2004, 7:39am » |
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Hi Donna,
Pretty much everything has been covered about the meds.
I am episodic like your husband and one of the things to remember is that he has been through it before and will get through this one. It hurts and its disruptive but it WILL end.
I am one of those that belives that less is more when it comes to medications. I hate taking the abortives. They seem to work for most people though.
This doesn't work for everyone but I have found that remaining relaxed and deep, slow breathing help me get through the pain. When I feel the pain coming on I try and find a place that I can go and not be interrupted. Concentrate on the breathing and will the pain to go away. If I try and fight it it just goes on and on. I accept that I will be in agony for 20 - 60 minutes and go with the flow. There is a great description of the technique in one of the threads about meditation and calmness. It takes some practice but it works for me.
Alcohol is a major trigger for alot of people so stay away from that at all costs.
Good luck. Just understanding what he is going through is a major help.
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Gator
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Re: Clusterheads Wife, New to site
« Reply #10 on: Aug 23rd, 2004, 4:30pm » |
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Hi Donna. I find it truly to sad to have to say welcome to our nightmare. Lots of good info been given already. I would augment that with this:
http://www.future-drugs.com/admin/articlefile/ERN020304.pdf
It covers preventative, transitional and abortive medications and surgical options. Print it out and take it to your doctor as well. As has been said, this disease of ours is unknown even amongst much of the medical community. You may find yourself educating your doctor.
Do not forget in all you are doing to support him to take care of yourself. Supporters need support, too. As you have learned, it is an emotional rollercoaster ride and the seatbelts are broken. It takes strength to hang on and that is what you will find here.
Tell that hub of yours he has family here, as do you, and we are waiting to meet him.
Pain Free wishes for him and strength for you.
Gator
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Kris_in_SJ
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Re: Clusterheads Wife, New to sit
« Reply #11 on: Aug 23rd, 2004, 8:46pm » |
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Hi - so sorry for your struggle with the beast.
You've been given some great advice and words of wisdom (thanks much ex_pat_asia)!
For those of us who are cyclical, HA's usually last anywhere from 4 weeks to 3 months (mine are about 10 weeks without preventative meds). That's a long time to suffer!
Follow Gator's link. It's one of the best I've ever read and has become the current "Bible" for my doc. Print it out and take it to your doc. It explains everything about drug treatment for clusters from A to Z.
Many Hugs and Good Wishes,
Kris
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thebbz
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Re: Clusterheads Wife, New to site
« Reply #13 on: Aug 23rd, 2004, 11:23pm » |
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My wife goes through the same as you. It has been proven that you do feel his pain. What all have said is good advice. With time you will anticipate what to do and when. My wife bless her heart, can sense almost as quickly as I can when an attack is coming . She knows that sometimes I need her there and sometimes I need to bang my head and hang on. Especially when I run out of Imitrex. You'll learn. Has your doc referred you to a neurologist? There are many triptans the doc can give as samples, relpax, frova, axert...imitrex stat dose is king for me. Sorry you have to be here,the neuro will be able to correct prednisone dosage and get the O2. Prayers also help!
thebbz
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ExPat_jac
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Re: Clusterheads Wife, New to site
« Reply #14 on: Aug 24th, 2004, 6:55am » |
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on Aug 22nd, 2004, 1:29pm, ex_pat_asia wrote:
I don't know who gets hit harder during my worse attacks...my wife ...or me.
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It's been a very hard week for me..harder than most...
Coming here helps, reading this almost made me cry (damn it...there are times I do that too much as it is)
Sorry friends...but I need to say this.
I was married for about 12 to 14 years, to what now I know was a wonderful woman. I can honestly say one of the few people other than my mother that understood what these headaches REALLY did to me...the pain, the effect they had (and have) on my life...
Stupid me...I let her go 
We still stay in touch (as much as I can from here...which now isn't that much) and before I moved here, I spent a few weeks with her. when she found out my plans the first question she asked me was
"Your doing WHAT???? Jac...how are you ever going to live in the tropics for god sake?????"
I remember making her live in a house as cold as a meat locker...because it made me feel better....
I remember watching her as she so wanted to just reach out and touch me....and me pushing her away...because her touch made things worse...
Oh dear god....thinking back, I see how very much my problem effected her...and how very patient she was...and how much she understood....
Just her words when I told her I was coming here told me that she of all people KNEW.
She understood....
I lost that.....
Donna ....be strong.
Understand....
Do not take offence at what the deamon makes him do....
Ex_pat_asian....you don't know who gets hit harder you or her?
Buddy....I'll tell you....
She does......
Because our pain stops....
But she has to live with the knowledge that she will have to spend the rest of her life watching you fight this...and never be able to anything about it....
We at least can try things....we can keep our hope up....
She has to just live with it....helplessly watching....
By-the-way.....
Tell that sweat, understanding lady of yours...
Happy Birthday!!!!! 
Peace everyone.......
I need to go blow my nose and wipe my eyes now....
Jac
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Woobie
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Re: Clusterheads Wife, New to site
« Reply #15 on: Aug 24th, 2004, 12:43pm » |
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on Aug 24th, 2004, 6:55am, ExPat_jac wrote:
It's been a very hard week for me..harder than most...
Coming here helps, reading this almost made me cry (damn it...there are times I do that too much as it is)
Sorry friends...but I need to say this.
I was married for about 12 to 14 years, to what now I know was a wonderful woman. I can honestly say one of the few people other than my mother that understood what these headaches REALLY did to me...the pain, the effect they had (and have) on my life...
Stupid me...I let her go
We still stay in touch (as much as I can from here...which now isn't that much) and before I moved here, I spent a few weeks with her. when she found out my plans the first question she asked me was
"Your doing WHAT???? Jac...how are you ever going to live in the tropics for god sake?????"
I remember making her live in a house as cold as a meat locker...because it made me feel better....
I remember watching her as she so wanted to just reach out and touch me....and me pushing her away...because her touch made things worse...
Oh dear god....thinking back, I see how very much my problem effected her...and how very patient she was...and how much she understood....
Just her words when I told her I was coming here told me that she of all people KNEW.
She understood....
I lost that.....
Donna ....be strong.
Understand....
Do not take offence at what the deamon makes him do....
Ex_pat_asian....you don't know who gets hit harder you or her?
Buddy....I'll tell you....
She does......
Because our pain stops....
But she has to live with the knowledge that she will have to spend the rest of her life watching you fight this...and never be able to anything about it....
We at least can try things....we can keep our hope up....
She has to just live with it....helplessly watching....
By-the-way.....
Tell that sweat, understanding lady of yours...
Happy Birthday!!!!!
Peace everyone.......
I need to go blow my nose and wipe my eyes now....
Jac
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All I can say to THAT is ........... WOW
smoke in my eyes over here!!!
Donna -
Welcome aboard!
Check your PMs. 
and Jac - have you TOLD her this??? You need to tell her. WOW
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