Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Lana, > I wanted to apologize for not being on-list and available for the > last 2-3 days. You NEVER have to apologize for having a LIFE! We all have times in our lives where we are too busy to do email, or our computers are down, or we just don't feel like logging in. That's nothing to apologize for - it's reality. I'd be worried about you more if you were always logged in and didn't spend any time away from the computer. > really hoping to have some time for just us now, to try to work on > our issues and get more from the counseling sessions. And that is truly the MOST important thing in your life. Don't let us come between you and your spouse. > Because of all of the above and being drained physically and > emotionally, I've not been very good about being able to read my Totally understandable! Lana, it's okay to have other priorities right now and you can rest assured that we will all continue to care about you, even when you don't have time to be there for us. -Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Lana, > I wanted to apologize for not being on-list and available for the > last 2-3 days. You NEVER have to apologize for having a LIFE! We all have times in our lives where we are too busy to do email, or our computers are down, or we just don't feel like logging in. That's nothing to apologize for - it's reality. I'd be worried about you more if you were always logged in and didn't spend any time away from the computer. > really hoping to have some time for just us now, to try to work on > our issues and get more from the counseling sessions. And that is truly the MOST important thing in your life. Don't let us come between you and your spouse. > Because of all of the above and being drained physically and > emotionally, I've not been very good about being able to read my Totally understandable! Lana, it's okay to have other priorities right now and you can rest assured that we will all continue to care about you, even when you don't have time to be there for us. -Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Thanks Barb, that helps me to feel much better and a lot less pressure! Love Lana > Lana, it's okay to have other priorities right now and you can rest assured > that we will all continue to care about you, even when you don't have time > to be there for us. > > -Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Thanks Barb, that helps me to feel much better and a lot less pressure! Love Lana > Lana, it's okay to have other priorities right now and you can rest assured > that we will all continue to care about you, even when you don't have time > to be there for us. > > -Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Lana my dear friend, you have nothing to apologise for! We are the first to understand that life happens and that some days you have to prioritise where you thoughts and energies are needed. As Barb said we'd be more worried about you if you weren't taking the time out to handle stuff. You need all your time and energy to work on your life issues right now Sweetie, so please know that we care enough about you to understand and send you every ounce of our love, hugs and prayers as you face your own rollercoaster ride - heaven knows you've been there plenty for all of us on ours! Hang in there Lana and know that I am praying hard for you and your family and I'm here for you if you need a virtual hug anytime. Love always....Jo xxx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 p.s. Mike, I have someone I'd like you to visit sometime, or she can come to you, perhaps when you are home for any length of time. It's my cousin, and we are fairly certain that she too has EDS – Hypermobile. She is also very psychic, and I know you would be very interested in her views of many things. She's a very intelligent person, and one who is delightful to converse with! I will try to write you more on this later! ---------------- Let me know the details on where she lives, etc. There is not much I could do during what remains on this trip because the schedule is now pretty tight and inflexible. I will be putting out a " final " itinerary revision later today or tomorrow. We will be home for a couple of weeks in September (13th through the 19th available) and again from about th 5th of November until whenever we decide to hit the road again next spring. As for being on the road, the 20th of September until late October will be in California, Arizona, New Mexico and Texas. I could take a look at sometime during that period, but it would have to be close to where we would be because we don't have large time gaps between commitments. We left Cindy 's in Detroit about an hour an a half ago and frankly don't know yet where we are headed today and tomorrow. We are trying again to see if we can contact Darlene's cousin in the Pittsburgh, PA area. If we can, we are going to attempt to visit them over the next couple of days. If not, we are going to just take a couple of days of " down time " someplace along the way. In other words, pull back a bit on the pace for a bit of a breather. Putting it mildly, we have been pushing it rather hard the last week or so. Either way, it looks like we are going to take a different route toward the Northeast quadrant and not go through Buffalo afterall. Again, I will post a more detailed revision later, hopefully this evening. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 p.s. Mike, I have someone I'd like you to visit sometime, or she can come to you, perhaps when you are home for any length of time. It's my cousin, and we are fairly certain that she too has EDS – Hypermobile. She is also very psychic, and I know you would be very interested in her views of many things. She's a very intelligent person, and one who is delightful to converse with! I will try to write you more on this later! ---------------- Let me know the details on where she lives, etc. There is not much I could do during what remains on this trip because the schedule is now pretty tight and inflexible. I will be putting out a " final " itinerary revision later today or tomorrow. We will be home for a couple of weeks in September (13th through the 19th available) and again from about th 5th of November until whenever we decide to hit the road again next spring. As for being on the road, the 20th of September until late October will be in California, Arizona, New Mexico and Texas. I could take a look at sometime during that period, but it would have to be close to where we would be because we don't have large time gaps between commitments. We left Cindy 's in Detroit about an hour an a half ago and frankly don't know yet where we are headed today and tomorrow. We are trying again to see if we can contact Darlene's cousin in the Pittsburgh, PA area. If we can, we are going to attempt to visit them over the next couple of days. If not, we are going to just take a couple of days of " down time " someplace along the way. In other words, pull back a bit on the pace for a bit of a breather. Putting it mildly, we have been pushing it rather hard the last week or so. Either way, it looks like we are going to take a different route toward the Northeast quadrant and not go through Buffalo afterall. Again, I will post a more detailed revision later, hopefully this evening. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Thanks Jo, the hugs and prayers are very much appreciated and needed! Please take care of YOU and keep us updated. Love Lana > Hang in there Lana and know that I am praying hard for you and your > family and I'm here for you if you need a virtual hug anytime. > > Love always....Jo > xxx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Mike, she lives in a suburb of Boise, Idaho, but has family in/around Seattle. She said she would be willing to drive there to see you as well. There is absolutely NO HURRY! She is not in a lot of pain at the moment, with the biggest problem being her feet and thigh areas. I'm fairly certain she has Fibro. She hasn't spoken to her doctor regarding all of this, as she had no idea, really, what EDS was all about. I have to admit, as sorry as I am for HER, I feel a little better knowing I'm not the only family member with this - though she's not nearly as hypermobile as me. When ever you think you may have time, whether it be early next spring, or this fall/winter sometime, just let me know and I'll send you her email and so forth. I just wanted to alert you that she would like to meet you and have you treat her. She is also trained in massage therapy. > Let me know the details on where she lives, etc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Oh sweet Lana! I am so, so sorry that things have not been going well. In regard to your marriage, well, working on it is the very best you can do right now to save or make a decision not to. If you are working on it at least the lines of communication are part way open. had no desire to do so and that was our ultimate demise. As long as your husband is even a bit willing to work on it and at the very least go to sessions that is a long way from chucking it all together. And you silly nut! Never ever apologies for what life gives you. I love you and will keep you in my prayers. Debbi PS: Saying NO to some of the company might help too. Really! You are NOT super woman and with trouble on the home front company has an interesting way to just postponing the issues.. No time you know, there is always an excuse. Hang in there and let us know when you need to *talk*. You know we are always here for you. After all YOU are! Hugs your way and prayers each day. Debbi Update and Apology Hi everyone, I wanted to apologize for not being on-list and available for the last 2-3 days. Ever since I returned home from the conference, I've either been out of town or had company. For the last three weekends in a row, I've had guests from out of town. Consequently, my whole schedule has been upended regarding laundry, getting groceries, spending time with my husband, and of course, my family's emails from the list! Also, I guess I need to let everyone know that I've been having lots of problems with my husband. He has ADD and is being treated for it (as a result of our visit to Mayo Clinic last winter), but either they haven't found the right combination of medication along with his medications for Restless Leg and Narcolepsy, or it's just getting to me more. We had a couple HUGE disagreements, which led me to lots of thinking and trying to decide if our marriage is worth saving or not. I've decided that it IS worth saving, IF we can learn to communicate better without hurting each other's feelings or giving the feeling of rejection. We recently began counseling last week and had our first session, which I think went pretty well. At least we both know this is something we both want-to be happier with each other, get to know each other again, and make our marriage not only survive but improve. Add into that, our health conditions, and it's just been somewhat overwhelming to me. I have added to my medications-Buspar, to help me with anxiety. I find conflict of any kind to be very upsetting, and don't really deal with it in a very good manner. Hopefully, this will help and I can be in a more positive attitude, especially toward my husband Mike. Also, I'm really hoping to have some time for just us now, to try to work on our issues and get more from the counseling sessions. Plus, we have a new program at work that we all need to learn, and I'm trying to look after my aging parents; which isn't a huge task, but my Mom doesn't get around well at all, can't walk much past a block due to lumbar spinal stenosis. It's not that they're demanding, but I just need to check in on them to make sure things are going OK and to let them know I haven't abandon them. Because of all of the above and being drained physically and emotionally, I've not been very good about being able to read my emails. There are a number of people I want to personally apologize to, including CindyLouWho, Sis (Lonestar Rose), S. and the people I owe emails to from the conference. I HAVE read your emails, and in some cases, heard your voice message on our phone, and just have not had time to write back or call back - and I'm VERY sorry about that! I hope you all realize how very important you are to me! I consider my friendships sacred to me. I promise I will be more available, now that it looks like I won't be having constant company on the weekends (I work full time for those of you who don't know). As for the rest of my beloved EDS family, please forgive me as well, for not being able to reply to missed birthdays and pleas for suggestions or just plain support (Jo, I have you directly in the front of my mind here, along with Betty and S)! Also, as an update, my husband has now figured out what our problem was in regards to capturing the videos I took at the conference, and duplicating them to share. I hope to begin sending them to people in the next couple weeks. Finally! J I always include all of the people from the support lists I belong to in my prayers and positive thoughts, and that will never end; so please know that I haven't abandon any of YOU either! I'm sorry this had to be a `group' email, but I hope you can see that I just didn't have time or energy to send to everyone privately. I hope you all have a great week! Love Lana p.s. Mike, I have someone I'd like you to visit sometime, or she can come to you, perhaps when you are home for any length of time. It's my cousin, and we are fairly certain that she too has EDS - Hypermobile. She is also very psychic, and I know you would be very interested in her views of many things. She's a very intelligent person, and one who is delightful to converse with! I will try to write you more on this later! To learn more about EDS, visit our website: http://www.ehlersdanlos.ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Thanks Debbi! I do take it as a positive sign that both of us are willing to go to counseling - which is much more than I expected. I am cautiously optimistic, though I know it will take some time. Believe me, I AM going to say no to company for at LEAST a month now! Love Lana > Hugs your way and prayers each day. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Thanks Debbi! I do take it as a positive sign that both of us are willing to go to counseling - which is much more than I expected. I am cautiously optimistic, though I know it will take some time. Believe me, I AM going to say no to company for at LEAST a month now! Love Lana > Hugs your way and prayers each day. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 In a message dated 8/16/2004 12:04:05 PM Pacific Standard Time, mike@... writes: the 20th of September until late October will be in California, Arizona, New Mexico and Texas. Mike....Hello...I've heard a tiny bit about your work with in PA & would love to hear more about it. I'm in California (east of Los Angeles). Have had much seccess with alternative practices, especially since kidlet & self are highly energy-sensitive as well as badly affected by western meds. What is the best way to contact you for more info?! Liza Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 I will make sure to get with Debbbi at the next meeting! We've a long history with " energy " experiences. Starts with a family history of " seeing " auras, ghosts, energy sources. Most of our female relatives have stories of sensing illnesses in people around them, seeing ghosts, not being able to stand being in crowds of people, etc. has pointed out the " pretty colors " around people, pets, plants, photographs, etc since she was able to first talk. She drove relatives nuts at a couple family reunions talking with the dead ones that as a child she didn't know had passed away. Never started working with the energy till the kids & I started martial arts & Tai Chi. Several instructors would mention they could feel our energy flow very easily & we became adept at snuffing candles & knocking over opponents with directed energy. A chance meeting with a massage therapist trained in Reiki, auras, & Tibetan massage (she spotted a mile away) helped us learn to understand some of that energy. Thru her we've met people who've worked with us with crystals, auras, Tachyon beads, etc. We've had 2 levels of Reiki training. Most explain that is some sort of " natural conduit " and seems to always be channeling negative energy thru herself to " cleanse " it. She's in need of learning to balance, shield and bolster her own reserves, and connect to the universal energy grid properly. We can help each other a lot, but find our own health depleted afterwards at times. The feeling with our energy flow to me is sort of like a manic/depressive situation. Out of balance, either WAY ON or near-collapse. Every new method we try seems to help a bit....then we seem to fall out of balance again? Our chiropractor has wondered how much we affect each other...and if so, how to balance our interaction? Would love to figure out just what causes the imbalances....EDS or???!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Lana As it always has been said....do not apologize, we are here to help, listen, support or whatever we can do. Good luck with your counselling , hope everything works out for you. Take care Betty Update and Apology Hi everyone, I wanted to apologize for not being on-list and available for the last 2-3 days. Ever since I returned home from the conference, I've either been out of town or had company. For the last three weekends in a row, I've had guests from out of town. Consequently, my whole schedule has been upended regarding laundry, getting groceries, spending time with my husband, and of course, my family's emails from the list! Also, I guess I need to let everyone know that I've been having lots of problems with my husband. He has ADD and is being treated for it (as a result of our visit to Mayo Clinic last winter), but either they haven't found the right combination of medication along with his medications for Restless Leg and Narcolepsy, or it's just getting to me more. We had a couple HUGE disagreements, which led me to lots of thinking and trying to decide if our marriage is worth saving or not. I've decided that it IS worth saving, IF we can learn to communicate better without hurting each other's feelings or giving the feeling of rejection. We recently began counseling last week and had our first session, which I think went pretty well. At least we both know this is something we both want-to be happier with each other, get to know each other again, and make our marriage not only survive but improve. Add into that, our health conditions, and it's just been somewhat overwhelming to me. I have added to my medications-Buspar, to help me with anxiety. I find conflict of any kind to be very upsetting, and don't really deal with it in a very good manner. Hopefully, this will help and I can be in a more positive attitude, especially toward my husband Mike. Also, I'm really hoping to have some time for just us now, to try to work on our issues and get more from the counseling sessions. Plus, we have a new program at work that we all need to learn, and I'm trying to look after my aging parents; which isn't a huge task, but my Mom doesn't get around well at all, can't walk much past a block due to lumbar spinal stenosis. It's not that they're demanding, but I just need to check in on them to make sure things are going OK and to let them know I haven't abandon them. Because of all of the above and being drained physically and emotionally, I've not been very good about being able to read my emails. There are a number of people I want to personally apologize to, including CindyLouWho, Sis (Lonestar Rose), S. and the people I owe emails to from the conference. I HAVE read your emails, and in some cases, heard your voice message on our phone, and just have not had time to write back or call back - and I'm VERY sorry about that! I hope you all realize how very important you are to me! I consider my friendships sacred to me. I promise I will be more available, now that it looks like I won't be having constant company on the weekends (I work full time for those of you who don't know). As for the rest of my beloved EDS family, please forgive me as well, for not being able to reply to missed birthdays and pleas for suggestions or just plain support (Jo, I have you directly in the front of my mind here, along with Betty and S)! Also, as an update, my husband has now figured out what our problem was in regards to capturing the videos I took at the conference, and duplicating them to share. I hope to begin sending them to people in the next couple weeks. Finally! J I always include all of the people from the support lists I belong to in my prayers and positive thoughts, and that will never end; so please know that I haven't abandon any of YOU either! I'm sorry this had to be a `group' email, but I hope you can see that I just didn't have time or energy to send to everyone privately. I hope you all have a great week! Love Lana p.s. Mike, I have someone I'd like you to visit sometime, or she can come to you, perhaps when you are home for any length of time. It's my cousin, and we are fairly certain that she too has EDS - Hypermobile. She is also very psychic, and I know you would be very interested in her views of many things. She's a very intelligent person, and one who is delightful to converse with! I will try to write you more on this later! To learn more about EDS, visit our website: http://www.ehlersdanlos.ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 The best way to reach Mike is by emailing him directly at mike@... (mike @ uggen . net ). When you write to him, it's usually best to cc me just in case they are having email trouble on the road, I can get the message to him. -Barb Uggen- (aka Mike's daughter) Re: Re: Update and Apology > In a message dated 8/16/2004 12:04:05 PM Pacific Standard Time, > mike@... writes: > the 20th of September until late October will be in > California, Arizona, New Mexico and Texas. > Mike....Hello...I've heard a tiny bit about your work with in PA & > would love to hear more about it. I'm in California (east of Los Angeles). Have > had much seccess with alternative practices, especially since kidlet & self > are highly energy-sensitive as well as badly affected by western meds. What is > the best way to contact you for more info?! > Liza > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Mike....Hello...I've heard a tiny bit about your work with in PA & would love to hear more about it. I'm in California (east of Los Angeles). Have had much seccess with alternative practices, especially since kidlet & self are highly energy-sensitive as well as badly affected by western meds. What is the best way to contact you for more info?! Liza ------------- I have already been cc'd by Barb where she sent you my email address off-list and she is correct that that is the best way to contact me. When we are home, I read most, if not all of the CEDA posts. When we are on the road, I read very few of them and then generally only those that I know pertain directly to me or are called to my attention. For one thing, I simply don't have the time since I am usually either behind the wheel driving from one place to the next or at some place working on someone. After getting a $1200 cellular phone bill last month before we got our service plan changed to something more reasonable, I have also been trying to keep the amount of time on it down. At any rate, stay in touch with Debbi Brown regarding the next SoCal EDSers party in October. I will also be putting out another post with the actual itinerary for the next trip, but the tentative plans look for us to be in the southern California area around the last week of September and first week of October. I would be very interested in learning more about which alternative therapies have worked for you and for which conditions. Also, since you and your kidlet are both energy sensitive, have either of you done any treatment work yourself, like on each other? If you have not, it would be very easy for me to " throw the switch " for both of you. I have recently been doing some work where I first get the parent and child to feel the energy by having them put their hand on someone's leg, my hand on top of theirs, and then calling up the various rhythms through their hands so they can actually feel it. I then take my hand off theirs and have them do it on their own, followed by them moving their hands out about an inch off-body and having them feel it off-body. After going through that drill, I then have the parent sit on the other side of the table and work in tandem with me on the child. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 lana - saying a prayer for you and all that you have to take care of right now. realize you are not alone! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Thanks much Betty! We're giving it our all for sure. Love Lana > Lana > As it always has been said....do not apologize, we are here to help, listen, > support or whatever we can do. Good luck with your counselling , hope > everything works out for you. > Take care > Betty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Thanks much Betty! We're giving it our all for sure. Love Lana > Lana > As it always has been said....do not apologize, we are here to help, listen, > support or whatever we can do. Good luck with your counselling , hope > everything works out for you. > Take care > Betty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Thanks much Betty! We're giving it our all for sure. Love Lana > Lana > As it always has been said....do not apologize, we are here to help, listen, > support or whatever we can do. Good luck with your counselling , hope > everything works out for you. > Take care > Betty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Thanks so much , I appreciate your prayers so much! Love Lana > lana - saying a prayer for you and all that you have to take care of > right now. realize you are not alone! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2004 Report Share Posted August 17, 2004 Lana: Don't beat yourself up about this....O.K? I found having overnight guests on the weekend a great deal of work particularly when I was working, and three weekends in a row has probably done you in. It can be enjoyable but as we wives all know there are extra groceries to buy and meals to prepare and bed linens to change plus the laundry. Summer is busy as it is but I really found weekend guests or entertaining is a huge amt of extra work, particularly for a wife. All us married ones have most likely ben there. My husband also has ADD and we went through all the medication trials, both with him and my ADD, LD, HEDS dtr. I love summer when my dtr. doesn't have to take Dexedrine to function at school and I don't have to deal with the stress school causes her and the severe increase in fatigue she endures. After enduring the side effects of the ADD meds for more than a year my husband decided the side effects were more than he could live with and I have to say he is much easier to live with now. When doctors don't have to deal with the emotional drop and anxiety that occurs each day when the med would wear off about 5 to 6 o'clock they just don't realise how tedious and difficult it is for the person to cope with. What was really complicating it was that the Dexedrine also ruined the amt. and quality of his sleep, so that he became doubly irritable. Over the years, I think he had found better compensatory measures for the ADD than the meds were able to provide... yes, he had better concentration during the day but the accumulation of side effects, particularly tension, were worse for him, but everyone is different and all adapt in different ways. At the time we and he did not realise the toll it was taking over the long term. With my dtr, because she has mild POTS and low Blood Pressure when standing (orthostatic intolerance) she takes midodrine to improve her Blood Pressure and she finds that it also improves her concentration and endurance so she also prefers to take it to the Dexedrine. It just took us a long time to figure this all out and achieve a balance on things, but I have to tell you that there were many, many times that things felt pretty crazy and stressed out around here. Those seemed to be the times when everyone was short on patience and had little good will towards each other. Often, we just need the stamina and courage to ride it out. Also, take down time for yourself. I know that is frequently easier said than done. For me it meant learning to accept the things I could not change, and no doubt that will be a continuous process for me. Hang in there girl and take care!!! Bernie Update and Apology Hi everyone, I wanted to apologize for not being on-list and available for the last 2-3 days. Ever since I returned home from the conference, I've either been out of town or had company. For the last three weekends in a row, I've had guests from out of town. Consequently, my whole schedule has been upended regarding laundry, getting groceries, spending time with my husband, and of course, my family's emails from the list! Also, I guess I need to let everyone know that I've been having lots of problems with my husband. He has ADD and is being treated for it (as a result of our visit to Mayo Clinic last winter), but either they haven't found the right combination of medication along with his medications for Restless Leg and Narcolepsy, or it's just getting to me more. We had a couple HUGE disagreements, which led me to lots of thinking and trying to decide if our marriage is worth saving or not. I've decided that it IS worth saving, IF we can learn to communicate better without hurting each other's feelings or giving the feeling of rejection. We recently began counseling last week and had our first session, which I think went pretty well. At least we both know this is something we both want-to be happier with each other, get to know each other again, and make our marriage not only survive but improve. Add into that, our health conditions, and it's just been somewhat overwhelming to me. I have added to my medications-Buspar, to help me with anxiety. I find conflict of any kind to be very upsetting, and don't really deal with it in a very good manner. Hopefully, this will help and I can be in a more positive attitude, especially toward my husband Mike. Also, I'm really hoping to have some time for just us now, to try to work on our issues and get more from the counseling sessions. Plus, we have a new program at work that we all need to learn, and I'm trying to look after my aging parents; which isn't a huge task, but my Mom doesn't get around well at all, can't walk much past a block due to lumbar spinal stenosis. It's not that they're demanding, but I just need to check in on them to make sure things are going OK and to let them know I haven't abandon them. Because of all of the above and being drained physically and emotionally, I've not been very good about being able to read my emails. There are a number of people I want to personally apologize to, including CindyLouWho, Sis (Lonestar Rose), S. and the people I owe emails to from the conference. I HAVE read your emails, and in some cases, heard your voice message on our phone, and just have not had time to write back or call back - and I'm VERY sorry about that! I hope you all realize how very important you are to me! I consider my friendships sacred to me. I promise I will be more available, now that it looks like I won't be having constant company on the weekends (I work full time for those of you who don't know). As for the rest of my beloved EDS family, please forgive me as well, for not being able to reply to missed birthdays and pleas for suggestions or just plain support (Jo, I have you directly in the front of my mind here, along with Betty and S)! Also, as an update, my husband has now figured out what our problem was in regards to capturing the videos I took at the conference, and duplicating them to share. I hope to begin sending them to people in the next couple weeks. Finally! J I always include all of the people from the support lists I belong to in my prayers and positive thoughts, and that will never end; so please know that I haven't abandon any of YOU either! I'm sorry this had to be a `group' email, but I hope you can see that I just didn't have time or energy to send to everyone privately. I hope you all have a great week! Love Lana p.s. Mike, I have someone I'd like you to visit sometime, or she can come to you, perhaps when you are home for any length of time. It's my cousin, and we are fairly certain that she too has EDS - Hypermobile. She is also very psychic, and I know you would be very interested in her views of many things. She's a very intelligent person, and one who is delightful to converse with! I will try to write you more on this later! To learn more about EDS, visit our website: http://www.ehlersdanlos.ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2004 Report Share Posted August 18, 2004 Bernie, thank you SO MUCH for your understanding and kind words! I am so appreciative to know your (and your husband and daughter) experience with ADD!!! What you said about 'coming down' around 5 or 6 o'clock, someone else just told me, and I'd never heard nor considered that before! So at least now, I kind of know what to expect! Also, it helps to know that the medications your husband were on caused other sleeping problems - and that kind of seems to be where Mike is right now. He is on slow release Ritilin, and has lowered the dose for the restless leg to every other night; but if things don't work out, I'm sure going to let him know what you said! Especially since by then, we will have had some counseling, and I'm hoping that will help him or give him hints to deal with some of the frustrating issues he faces daily. Truly, it is so very helpful to me, and I thank you again for sharing your experiences! Love Lana > Lana: Don't beat yourself up about this....O.K? I found having > overnight guests on the weekend a great deal of work particularly when I > was working, and three weekends in a row has probably done you in. It > can be enjoyable but as we wives all know there are extra groceries to > buy and meals to prepare and bed linens to change plus the laundry. > Summer is busy as it is but I really found weekend guests or > entertaining is a huge amt of extra work, particularly for a wife. All > us married ones have most likely ben there. > > My husband also has ADD and we went through all the medication trials, > both with him and my ADD, LD, HEDS dtr. I love summer when my dtr. > doesn't have to take Dexedrine to function at school and I don't have to > deal with the stress school causes her and the severe increase in > fatigue she endures. > > After enduring the side effects of the ADD meds for more than a year my > husband decided the side effects were more than he could live with and I > have to say he is much easier to live with now. When doctors don't have > to deal with the emotional drop and anxiety that occurs each day when > the med would wear off about 5 to 6 o'clock they just don't realise how > tedious and difficult it is for the person to cope with. What was > really complicating it was that the Dexedrine also ruined the amt. and > quality of his sleep, so that he became doubly irritable. Over the > years, I think he had found better compensatory measures for the ADD > than the meds were able to provide... yes, he had better concentration > during the day but the accumulation of side effects, particularly > tension, were worse for him, but everyone is different and all adapt in > different ways. At the time we and he did not realise the toll it was > taking over the long term. > > With my dtr, because she has mild POTS and low Blood Pressure when > standing (orthostatic intolerance) she takes midodrine to improve her > Blood Pressure and she finds that it also improves her concentration and > endurance so she also prefers to take it to the Dexedrine. It just took > us a long time to figure this all out and achieve a balance on things, > but I have to tell you that there were many, many times that things felt > pretty crazy and stressed out around here. Those seemed to be the times > when everyone was short on patience and had little good will towards > each other. > > Often, we just need the stamina and courage to ride it out. Also, take > down time for yourself. I know that is frequently easier said than > done. For me it meant learning to accept the things I could not change, > and no doubt that will be a continuous process for me. > > Hang in there girl and take care!!! > Bernie > > > > > Update and Apology > > Hi everyone, > > I wanted to apologize for not being on-list and available for the > last 2-3 days. Ever since I returned home from the conference, I've > either been out of town or had company. For the last three weekends > in a row, I've had guests from out of town. Consequently, my whole > schedule has been upended regarding laundry, getting groceries, > spending time with my husband, and of course, my family's emails from > the list! > > Also, I guess I need to let everyone know that I've been having lots > of problems with my husband. He has ADD and is being treated for it > (as a result of our visit to Mayo Clinic last winter), but either > they haven't found the right combination of medication along with his > medications for Restless Leg and Narcolepsy, or it's just getting to > me more. We had a couple HUGE disagreements, which led me to lots of > thinking and trying to decide if our marriage is worth saving or > not. I've decided that it IS worth saving, IF we can learn to > communicate better without hurting each other's feelings or giving > the feeling of rejection. We recently began counseling last week and > had our first session, which I think went pretty well. At least we > both know this is something we both want-to be happier with each > other, get to know each other again, and make our marriage not only > survive but improve. Add into that, our health conditions, and it's > just been somewhat overwhelming to me. I have added to my > medications-Buspar, to help me with anxiety. I find conflict of any > kind to be very upsetting, and don't really deal with it in a very > good manner. Hopefully, this will help and I can be in a more > positive attitude, especially toward my husband Mike. Also, I'm > really hoping to have some time for just us now, to try to work on > our issues and get more from the counseling sessions. > > Plus, we have a new program at work that we all need to learn, and > I'm trying to look after my aging parents; which isn't a huge task, > but my Mom doesn't get around well at all, can't walk much past a > block due to lumbar spinal stenosis. It's not that they're > demanding, but I just need to check in on them to make sure things > are going OK and to let them know I haven't abandon them. > > Because of all of the above and being drained physically and > emotionally, I've not been very good about being able to read my > emails. There are a number of people I want to personally apologize > to, including CindyLouWho, Sis (Lonestar Rose), S. and the > people I owe emails to from the conference. I HAVE read your emails, > and in some cases, heard your voice message on our phone, and just > have not had time to write back or call back - and I'm VERY sorry > about that! I hope you all realize how very important you are to > me! I consider my friendships sacred to me. I promise I will be > more available, now that it looks like I won't be having constant > company on the weekends (I work full time for those of you who don't > know). As for the rest of my beloved EDS family, please forgive me > as well, for not being able to reply to missed birthdays and pleas > for suggestions or just plain support (Jo, I have you directly in the > front of my mind here, along with Betty and S)! > > Also, as an update, my husband has now figured out what our problem > was in regards to capturing the videos I took at the conference, and > duplicating them to share. I hope to begin sending them to people in > the next couple weeks. Finally! J > > I always include all of the people from the support lists I belong to > in my prayers and positive thoughts, and that will never end; so > please know that I haven't abandon any of YOU either! I'm sorry this > had to be a `group' email, but I hope you can see that I just didn't > have time or energy to send to everyone privately. I hope you all > have a great week! > > Love Lana > > p.s. Mike, I have someone I'd like you to visit sometime, or she can > come to you, perhaps when you are home for any length of time. It's > my cousin, and we are fairly certain that she too has EDS - > Hypermobile. She is also very psychic, and I know you would be very > interested in her views of many things. She's a very intelligent > person, and one who is delightful to converse with! I will try to > write you more on this later! > > > > > > To learn more about EDS, visit our website: http://www.ehlersdanlos.ca > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2004 Report Share Posted August 19, 2004 Your most welcome Lana....anyway I can help let me know. My husband would be more articulate on the side effects that built up than I even, and I'm sure would be willing to e-mail yours if that could clarify things. Take it easy! Bernie Re: Update and Apology Bernie, thank you SO MUCH for your understanding and kind words! I am so appreciative to know your (and your husband and daughter) experience with ADD!!! What you said about 'coming down' around 5 or 6 o'clock, someone else just told me, and I'd never heard nor considered that before! So at least now, I kind of know what to expect! Also, it helps to know that the medications your husband were on caused other sleeping problems - and that kind of seems to be where Mike is right now. He is on slow release Ritilin, and has lowered the dose for the restless leg to every other night; but if things don't work out, I'm sure going to let him know what you said! Especially since by then, we will have had some counseling, and I'm hoping that will help him or give him hints to deal with some of the frustrating issues he faces daily. Truly, it is so very helpful to me, and I thank you again for sharing your experiences! Love Lana Quote Link to comment Share on other sites More sharing options...
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