tag:blogger.com,1999:blog-1992059429124770965.comments2023-06-04T13:55:19.882+01:00Everyday WishesJohttp://www.blogger.com/profile/14682125599431651877noreply@blogger.comBlogger81125tag:blogger.com,1999:blog-1992059429124770965.post-26881030759683089132017-09-23T18:45:50.470+01:002017-09-23T18:45:50.470+01:00Did you know that you can shorten your urls with S...Did you know that you can shorten your urls with <b><a href="http://shortener.syntaxlinks.com/r/Shortest" rel="nofollow">Shortest</a></b> and <b>get $$$$$ from every visit to</b> your short urls.Bloggerhttps://www.blogger.com/profile/07287821785570247118noreply@blogger.comtag:blogger.com,1999:blog-1992059429124770965.post-73642324666513105982014-09-29T15:19:03.689+01:002014-09-29T15:19:03.689+01:00Old post, I know, but I had to comment! I couldn&#...Old post, I know, but I had to comment! I couldn't agree with you more. I have EDS as well, and I've been frustrated by people telling me that with determination alone, I can overcome my physical limitations. I see the empowering message there: attitude is hugely important, and a message of hope is a powerful antidote to self-pity and giving up on life. But unfortunately, attitude is not everything! Sometimes your condition just don't cooperate. <br /><br />I also see a less sunny corollary to the 'all you need is a good attitude' mantra: doesn't it also imply that, if you don't manage to overcome a limitation, it's your fault for not believing in yourself? I'm sure no one means that when they counsel positivity, but it's a conclusion that we might be tempted to draw. And of course, that's the opposite of empowerment.<br /><br />Thanks for the thoughtful post!Colin Gorriehttp://www.notthatkindofdr.comnoreply@blogger.comtag:blogger.com,1999:blog-1992059429124770965.post-60397739893743362992013-10-02T22:15:44.595+01:002013-10-02T22:15:44.595+01:00Hi Jo!
Again, you have given us another beautifu...Hi Jo! <br />Again, you have given us another beautiful, touching and well written entry and a peek at your soul. You have SUCH a way with words! I can't see a lot of your dad’s face in this picture but from what I can see, you sure do seem to resemble him! What a great picture! A treasure! (And what a cutie you were!!...and still are!:-))<br /><br />Your dad was born two years after I was. I tend to think of you as a peer so it is a bit difficult to realize I was older than him. I remember well those days when he was failing and he was waiting for a lung for a transplant. You had your mom there....your family was helping you move in the new furniture. We are coming up on the “Anniversary" of his passing at the end of the month. I always get weepy around the anniversary of my Dad's death and it was over nine years ago.<br /><br />But remembering your dad on his birthday and recalling all the love he showered on you and your family is a great time to remember him. Much happier than remembering the sadness associated with his passing. Even if I try to focus on the good times, that sadness comes as that day approaches. At least I find it happens near the anniversaries of sad events even when I am not aware of the date!<br /><br />How I wish your dad could have walked you down the aisle. I can imagine a smile similar to the one on his face the picture… but even bigger!<br /><br />Today I met with Pete, a landscaper, to look at doing some updates and stump removals out front to give the place a bit of Curb Appeal as we get ready to sell it in a couple of years. Last winter a huge, heavy snow split and broke four Arborvitae trees that my dad and I planted together many years ago. I was mentioning to Pete that my dad and I had planted them and started to get teary. They were the last remaining projects that my Dad and I did together. The others were removed several years ago when we filled in our swimming pool. Doing projects with my dad was so special. You had books and films and music and words that you shared with your dad. My dad and I did outdoor projects. We built a shed for the pool equipment, bottomless boxes for gardens, planted these trees…now they are all gone and soon even the roots will be gone, too. Sad but time moves on.<br /><br />Encretinate! Even my spell checker doesn’t know that one! Great word! Wrapping you in a huge hug from across the pond and understanding your sadness and longing to have just one more conversation with your dad.<br /><br />I didn’t know your dad, but I have no doubt at all that you were as special to him as he still is to you!<br />Love you!!!<br />Sue<br />Sue Mhttps://www.blogger.com/profile/15704816136367478130noreply@blogger.comtag:blogger.com,1999:blog-1992059429124770965.post-5822198922564153752013-10-01T22:07:06.884+01:002013-10-01T22:07:06.884+01:00You look so much like your dad! What a lovely phot...You look so much like your dad! What a lovely photo. I'm so sorry for your loss xxflohttp://www.disabledmedic.blogspot.comnoreply@blogger.comtag:blogger.com,1999:blog-1992059429124770965.post-23767033798581957272013-03-29T03:21:10.083+00:002013-03-29T03:21:10.083+00:00That is so awesome! What finally made the differen...That is so awesome! What finally made the difference in the stability of your lungs? I had asthma as a kid but nothing like you deal with. I still have an inhaler in my purse always but it still amazes me when the doctors ask when I last used it and I have to really stop and think because it's been so long. I can't imagine how surreal it must feel to go from frequent emergency hospitalizations to not needing your inhaler regularly. So excited for you! Sending you love, hugs and prayers - Allie<br />cb allie1Alliehttps://www.blogger.com/profile/05146422826331761081noreply@blogger.comtag:blogger.com,1999:blog-1992059429124770965.post-72346354773013135662013-03-26T13:23:54.347+00:002013-03-26T13:23:54.347+00:00Hi Jo!
As usual you make me smile and fill me wit...Hi Jo! <br />As usual you make me smile and fill me with admiration for all the knowledge and wisdom you have amassed in your 30+ years! <br /><br />I can imagine that opening every unopened box felt worthy of a celebration! I am celebrating with you! :-)<br /><br />Also very cool that you have not had an emergency hospitalization in 8 months! That is outstanding!<br />Sending you waves of positive energy! Hope you are having a very good day! <br /><br />Love you!<br />XOXOXO <br />SueSue Mhttps://www.blogger.com/profile/15704816136367478130noreply@blogger.comtag:blogger.com,1999:blog-1992059429124770965.post-79601439302606711012013-01-23T13:40:24.034+00:002013-01-23T13:40:24.034+00:00Good morning, Jo!
Just poured myself a cup of (im...Good morning, Jo! <br />Just poured myself a cup of (improper) coffee ;-) and will share a brief coffee break with you before I head out to Physical Therapy!<br />I love you! I love your way with words! I love the way you know yourself and I love the way you have of sharing yourself with all of us! You Rock!!<br /><br />This latest post is so helpful! I have not had to have surgery often and certainly one that pose the post-op challenges you have faced, but these tips and the lessons you have learned are indeed very helpful! I will certainly pass along your blog address to my friends who are facing surgery and check back and review them the next time I go in for surgery…Which will probably be to replace my port. (It has been giving me grief! But it was “installed in Sept of ‘07 so it doesn’t owe me much anymore!)<br /><br />Some of your advice is helpful in getting ready for the horrid storms we have been getting in our neck of New England these past two years that resulted power outages of week! I did plan ahead and had personal wipes and a few of the other things you suggested…but you gave me more ideas for my emergency supplies and preparations!<br /><br />I just realized that I somehow missed commenting on your post of October 1…the one where you discussed your new baseline and the realization that you will probably never be a mother. I grieve that loss with you. Your personality and wisdom would make you an excellent mother. It will also make you an excellent aunt and friend…but as you noted, it isn’t the same. When you spoke of not being able to lift a child, I do understand that. My muscles have deteriorated to the point where this past weekend was probably the last visit with Gabe when I will be able to lift him. I didn’t try. I sat and had people bring him to me. It is a helpless feeling to know that if something went wrong I couldn’t pick him up…unless some huge rush of adrenaline kicked in!<br /><br />You wrote that because you can’t do and be all you would like to be for those you love, you are a failure. That word could NEVER describe you! Wouldn’t be anywhere on any list of words that describe you! You inspire me and so many others. We love you because of the woman, person, friend that you are not because of anything you might do! Sharing your soul is such a gift to all of us! I treasure your friendship and I have never met you in person!<br />Hope this finds you having a good day! Thanks for sharing “coffee” with me! <br /><br />Much love and many hugs form across the pond!<br />Sue<br />Sue Mhttps://www.blogger.com/profile/15704816136367478130noreply@blogger.comtag:blogger.com,1999:blog-1992059429124770965.post-11782011273055421572012-10-07T00:06:34.042+01:002012-10-07T00:06:34.042+01:00Hi Jo,
I couldn't read this and not comment. I...Hi Jo,<br />I couldn't read this and not comment. I know I don't know you that well, but I am absolutely sure that you are in no way a failure to anyone. From what I know of you, I know that you're a brave, caring, beautiful, inspirational person. I have no idea where you get your strength from with all that you go through.<br />Sending you lots of love and hugs<br />Dawn xxDawnhttps://www.blogger.com/profile/06719226642700362070noreply@blogger.comtag:blogger.com,1999:blog-1992059429124770965.post-60102983227089579632012-10-04T15:59:27.326+01:002012-10-04T15:59:27.326+01:00Thanks Bill! I am so grateful for those people who...Thanks Bill! I am so grateful for those people who share my grief as well as my happiness, especially you and Sue. Richard and I have a number of close friends here in London and we get so much pleasure from 'sharing' their children. I suppose, like being a grandparent, we get to enjoy the best bits without the sleepless nights, tantrums and snotty noses!<br /><br />You are extremely kind to say that I do give something back to my loved ones. That means a lot to me! <br /><br />Keeping you and your family in my thoughts, as ever. Please hug Sue from me and ask her to do the same for you!Johttps://www.blogger.com/profile/14682125599431651877noreply@blogger.comtag:blogger.com,1999:blog-1992059429124770965.post-74688337095809670192012-10-02T10:08:53.335+01:002012-10-02T10:08:53.335+01:00As always, Jo, your posts are so authentic and cre...As always, Jo, your posts are so authentic and create such a strong connection to you and your journey. That is one reason why you can only post when you have the mental energy to write what is in your heart.<br /><br />I grieve with you at the thought that you and Richard will not be parents to your own biological children. You have so much capacity for love.<br /><br />But I can't let the closing comment go unchallenged that you are not a good wife and friend. You are an exceptional source of strength and comfort to all of us who know you. Your life lights the way to understanding what is important and real, as opposed to what is only a surface appearance.<br /><br />I thank you for sharing with us.<br /><br />BillBill McConnellhttps://www.blogger.com/profile/04263982063765718513noreply@blogger.comtag:blogger.com,1999:blog-1992059429124770965.post-60899229669875108702012-08-24T08:44:46.657+01:002012-08-24T08:44:46.657+01:00Thanks Stephanie!
Hi Chronicrants, and thanks for...Thanks Stephanie!<br /><br />Hi Chronicrants, and thanks for your comment. I have the same thing with friends; that they don't want to tell me about their health (or other things) because they feel that it's insignificant in comparison to my illness. I tell them that I love them and want to be a good friend, supporting them through their hard times. I want all the friendship responsibilities - not a censored friendship!Johttps://www.blogger.com/profile/14682125599431651877noreply@blogger.comtag:blogger.com,1999:blog-1992059429124770965.post-16845973040641578932012-08-24T01:24:17.520+01:002012-08-24T01:24:17.520+01:00I hope many people read this and understand it. So...I hope many people read this and understand it. Sometimes my friends hesitate to talk about their problems, saying they're nothing compared to mine, but I try to assure them that their problems are bad for them, and that my situation makes theirs no less real. It's the same way that my concerns are no less valid just because someone else is in worse shape than I am. You are so right that everyone's problems are real and valid and we must respect that.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1992059429124770965.post-59131904591630124652012-07-20T04:32:39.576+01:002012-07-20T04:32:39.576+01:00Well said :)Well said :)Stephaniehttps://www.blogger.com/profile/10376604610344801300noreply@blogger.comtag:blogger.com,1999:blog-1992059429124770965.post-21241018462175872862012-07-20T04:29:23.228+01:002012-07-20T04:29:23.228+01:00Thanks for sharing :) Posting on my GP FB page to...Thanks for sharing :) Posting on my GP FB page to inspire others. Please don't be embarrassed, just feel the love!Stephaniehttps://www.blogger.com/profile/10376604610344801300noreply@blogger.comtag:blogger.com,1999:blog-1992059429124770965.post-15031719096249473522012-05-31T01:21:33.293+01:002012-05-31T01:21:33.293+01:00Hello Jo! I do like this blog of yours :) And I li...Hello Jo! I do like this blog of yours :) And I like this post very much. You articulate things so clearly, and in a way that I can't.<br /><br />We must skype soon; sorry I've not been in touch. Late library sessions til 10pm +, and I know you're early to bed.<br /><br />xxxThe weirdest (endo) sister of them allhttps://www.blogger.com/profile/04214713259753806739noreply@blogger.comtag:blogger.com,1999:blog-1992059429124770965.post-77697225594183522742012-05-22T13:56:50.900+01:002012-05-22T13:56:50.900+01:00Good Morning Jo!
I am having my coffee with you th...Good Morning Jo!<br />I am having my coffee with you this morning and smiling. I smiled and nodded as I read your post. You see a bigger picture than most people do. I am so pleased that our paths have crossed. (Thank you, Ryan!*) I am happy for myself that you, such a beautiful and courageous woman, are part of my life. You inspire me and many others every day. <br /><br />I and happy that you are able to see the wonder in every day despite all you deal with on a minute to minute basis.<br /><br />We DO get to experience wonderful things every day. Some days we just need to look a little harder for them! ;-)<br /><br />I so love your way with words and especially the thoughts and insights behind them, Jo. I have shared several of your CB posts with friends in the past. Bill shared this post on FB. It touched him. <br /><br />I am taking today off of work. I have NO appointments so I don't have to leave the house! I can dig into a project or two that have been hanging fire...and have coffee with a dear friend from across the pond!):-)<br /><br />I am sending you and your med team loads of positive energy and wrapping you in love and light today! Hope it is a good day for you and the Lovely Richard, too!<br />Love an a HUGE HUG<br />Sue<br /><br />*Less than a minute after I wrote that I heard a train whistle. They are not all that common here. I always think that it is Ryan saying, "Hi" when I hear one!Sue Mhttps://www.blogger.com/profile/15704816136367478130noreply@blogger.comtag:blogger.com,1999:blog-1992059429124770965.post-59613962083213903722012-03-26T09:54:33.124+01:002012-03-26T09:54:33.124+01:00Your soup request reminds me of when Sue had gut g...Your soup request reminds me of when Sue had gut gvhd and could eat only a very bland diet for many days. She requested that friends post on her caring bridge site what they were having to eat so that she could enjoy the food in her imagination. Not everyone could understand, but she got some great responses.<br /><br />Unfortunately, I am a very limited cook, with no recipes to offer. So, instead I send warm thoughts and good wishes.Bill McConnellhttps://www.blogger.com/profile/04263982063765718513noreply@blogger.comtag:blogger.com,1999:blog-1992059429124770965.post-24108784470769759302012-03-25T19:34:32.625+01:002012-03-25T19:34:32.625+01:00Thanks for sharing your update, I had no idea you ...Thanks for sharing your update, I had no idea you had a blog and love it! I too love knitting, reading baking and as you already know, food :)<br />Having been in your shoes last summer with the Botox treatment and now with tube I can completely relate to what it feels like. I admire your attitude and determination as well as continued love for all things tasty, despite the restrictions. I've written about my experiences on my blog but if you ever want to know more or just feel connected to someone who has been there, I'm happy to chat. Keeping you in my thoughts and crossing my fingers things turn around for you soon!<br />StephanieStephaniehttps://www.blogger.com/profile/10376604610344801300noreply@blogger.comtag:blogger.com,1999:blog-1992059429124770965.post-67826313469294975362012-03-03T18:09:35.557+00:002012-03-03T18:09:35.557+00:00Happy birthday for next week! I hope you feel as p...Happy birthday for next week! I hope you feel as proud as I do for getting to each birthday!Johttps://www.blogger.com/profile/14682125599431651877noreply@blogger.comtag:blogger.com,1999:blog-1992059429124770965.post-36853295103122786542012-03-03T18:08:54.001+00:002012-03-03T18:08:54.001+00:00Hi Allie,
Of course you may quote any part of thi...Hi Allie,<br /><br />Of course you may quote any part of this blog on your CB site. Linking back to the blog would be lovely - thanks!<br /><br />Hugs, JoJohttps://www.blogger.com/profile/14682125599431651877noreply@blogger.comtag:blogger.com,1999:blog-1992059429124770965.post-62358172876698435572012-03-02T01:43:52.154+00:002012-03-02T01:43:52.154+00:00Brillaintly said! Do you mind if I quote some of t...Brillaintly said! Do you mind if I quote some of this on my cb site? If it's okay, would you rather I include a link back to your site or just include your name?<br />Thanks! -Allie<br />cb allie1Alliehttps://www.blogger.com/profile/05146422826331761081noreply@blogger.comtag:blogger.com,1999:blog-1992059429124770965.post-15308867294932374462012-03-02T01:40:53.099+00:002012-03-02T01:40:53.099+00:00Hi Jo!
I'm working on stuffing hundreds of en...Hi Jo! <br />I'm working on stuffing hundreds of envelopes at work (literally) so I'm using the time to catch up on your posts while my hands are busy. I've mastered the art of reading and stuffing at the same time. -although I do have to take a break to type! :) <br />Your scenerio at the top sounds all too familiar. It finally occured to me that one of the reasons I push so hard on the good days is that I always have this fear that it will be my last good day for a while, so I feel compelled to get everything in order 'just in case'. For me, I had no idea when I left work one Wednesday in November 2007, that it would be months before I was able to work consistantly again. Or that over 4 years later, I'm still only able to work part time. Lately I found that more and more often I was pushing myself till I crashed everyday at work, 'just in case'. I finally sat down with my boss and planned out the whole month, assigning tasks to each day. (my tasks basically repeat each month) Now I know that once I've finished that day's tasks, I can leave. I even thought to include several 'catch up' days with no tasks assigned, so that I don't fall behind if I miss a day or two. And best of all, my boss knows what will be done when, and what exactly she needs to cover if I'm out for more than a day or two. Trusting that the schedule works enough to stick to it is still a work in progress, but the longer I stick to it, the more I realize that my body is much more predictable when I'm not constantly over doing it. Now if only I could do the same for errands and housework!<br />-Allie (cb allie1)Alliehttps://www.blogger.com/profile/05146422826331761081noreply@blogger.comtag:blogger.com,1999:blog-1992059429124770965.post-27664660060975676402012-02-29T21:24:29.043+00:002012-02-29T21:24:29.043+00:00Just lovely, Jo. You are right to mark the milesto...Just lovely, Jo. You are right to mark the milestones. They all count - even more so, because of the struggle it takes to get through every day of each passing year. PS It's my birthday next week too!This Limbohttp://this-limbo.blogspot.comnoreply@blogger.comtag:blogger.com,1999:blog-1992059429124770965.post-19814911841720221862012-02-26T15:29:46.412+00:002012-02-26T15:29:46.412+00:00Hi Shannon,
That's definitely a frustrating s...Hi Shannon,<br /><br />That's definitely a frustrating situation. Pacing is a big goal - why not make it your goal to keep a diary of how much activity you do and how bad your symptoms are (I find it easiest to give a score out of 5, rather than trying to describe symptoms)? It's a bit of a chore, but might give you an idea of how much you can do on a 'normal' day so that you can start to pace around that level of activity.<br /><br />*hugs*<br />JoJohttps://www.blogger.com/profile/14682125599431651877noreply@blogger.comtag:blogger.com,1999:blog-1992059429124770965.post-67448848524472952782012-02-26T15:13:41.692+00:002012-02-26T15:13:41.692+00:00I'm still learning how to pace myself. I usual...I'm still learning how to pace myself. I usually do too much and crash. I find even the slightest exertion exercise-wise makes my symptoms (and pain) worse. A simple outing to the doc's office has me recovering for days. So my current goal is to learn how to pace myself. Right after I figure out how many spoons I have on a given day. If you don't know how much energy you have in store, then how can you know how much you have to pace yourself? Rather frustrating lolShannonhttp://www.livingwithfibromyalgia.canoreply@blogger.com