Most of us have seen the TOY STORY animated films and know those dear characters come alive when humans are not around. They talk, skip, fight and basically behave as who they are. Instead of being a stuffed, mechanical or dismembered toy, on the floor, on a shelf or stuffed willy-nilly into an old toy box, they’re ALIVE. So what if we do live with chronic pain? We may be temporarily lost but we’re alive.
I often feel like one of those toys and want to shout, “You Hoo! I’m still alive in here!”
I know many of you share my feelings that we are in the lost and found department, voiceless, unidentified and without purpose. As those humorous yet dear toys from those films have shown us, anything is possible. Just because we’re maimed, sick, older or in some other way changed, doesn’t mean we need to rot away in the lonely box of some lost and found department of life. We need not let ourselves be discarded, only put into a new place or role.
I often have to remind myself I still have value, purpose and a reason to be alive. Today, I would like to share a few of my lessons learned from this different way of living; different than it once was and different than many other folks in this world.
A missing piece or part has to be prioritized. If it’s an extremity, it’s darn irritating and may hurt but it doesn’t deserve the same grief work as a missing heart, brain, or courage. You can have heart trouble or you can be heartless and cold hearted. There is a huge difference. You can have brain trouble, cognitive difficulties, etc. but that’s different than being thoughtless. Any injury, painful part or battle you fight needs to be examined objectively. After you’ve prioritized, you’ll realize you can’t be upset over everything, all the time, or do you want to be?
One has to accept it is lonely in the lost and found department. You and I are left out of the invitations, celebrations and trips. If we do go, we don’t perform as we once did, if at all. There is a good chance we are uncomfortable while we should be enjoying ourselves and others. Again, the balance has to be sought and determined. If it’s important and you go to this activity and moan and groan, that’s not good. If you attend and are sick, in pain or vomiting all the next day, was it worth it? If you broke down and wept after the event or worse yet, during the event, that’s probably the answer you seek for the next time. Oh yes, if you or I behave in some foreboding manner by behaving badly toward others or performed the role of Joan of Arc, again, more thought is needed. If your joy in attending outweighed your misery during or afterward, then it’s probably a good thing. If you attended for someone else’s pleasure, that can be okay, too, if you made the decision with all the knowledge available to you. Did it bring you deep pleasure and joy?
I have often found when something is lost, something else is usually found. It’s the idea of gifts of exchange. Life often requires us to exchange one experience, talent or favorite activity or even job in order to find another. If you were once good at one thing; you can be good at something else. If you’ve never been good at anything, always hated everybody, always felt defeated, well, good luck. You’re apparently still the same old you, don’t you think?
That reminds me that we must have hope here in the good old lost and found department. We have to hope we can replace what is lost by finding something else. It’s only the query, the uncertainty and the emotion of fear that threatens us. Hope can take care of all of those empty spots we feel deep within, just keep believing an answer is being formed and developed and will arrive when it should. When you dig a hole at the edge of the sea, does not the ocean with its millions of waves eventually fill it?
It helps when you have lost, are lost and are seeking new ways to live, to realize others are in that search with you. Become part of something larger than yourself. Can you do that? I have found it helps enormously. Want to try it?
Don’t forget the importance of silliness and laughter. A gray day can become sunny with just one sound of laughter. I find the older and more ill I become, the sillier I get. Oh dear…is that possible? If it brings you joy and is legal and doesn’t hurt someone else…do it. Last week I told all of you about my Valentine tree which is replacing our Christmas tree. My grandchildren love it and are enjoying it tremendously. During these dark, damp winter months it offers light and pleasure and yes, a wee bit of laughter. When shopping the other day in the lingerie department at our local J.C. Penney’s, I spotted a table full of lacy Valentine undies. I had to buy a pair, not for me but for my Valentine tree. It was a whim and it has brought humor to me and to some members of my family. The panties fit right into the theme of the tree in all of their lacy, dotted pink and red glory, hanging on a red satin hangar. Have you a silly impulse or whim? What are you going to do about it? When her children showed their mother, my daughter this new addition to the tree, she asked very complacently, “Are they yours or Pop’s?”
The Valentine tree reminds me of one of the reasons we are here, whole or compromised and that is to make memories for ourselves and others. My grandchildren will never forget when Nana decorated the tree for this dark Valentine’s season. All of life is making memories for someone; either ourselves or someone else. Be whatever you want to be while you are in this state of being but never, oh please, never be boring. What’s fun about that?
Plan to be surprised. Some of the surprises I am facing are not surprise party fun but by informing myself through reading I was a bit more informed. One of the surprises which surprise me as I deal with my own surprises is that so many other humans out there expected to leave this world intact. Probably want to read that again…I’m sorry. It was a bit confusing but I must admit surprise when an 80 year old person complains when something goes awry with their health. I think it’s wise to squeeze that tube until it’s empty, use it all up and live right up until the end. Do what you want to do in any way you are capable of doing it. When someone advises you not to do something and you want to, or they ask you why you are doing something, just tell them, “Because I can.” Politicians get away with that kind of thinking all the time, don’t they?
While you and I are daily looking for what we have lost and finding new parts of ourselves, we will have advocates and we will have enemies. Unfortunately, some of them come from two specific categories which are relatives and medical personnel. We each have to be wise enough to know which types are which and do something about it. Try not to allow either one to push you around. Will you learn to glean out the good from the bad?
Remember there are many ways to be lost. We’re faced with it each day in many forms and not always in us. A very drunk lady hit a telephone pole in front of our house the other night. She is lost indeed and has been lost for a long time. (Physically, she is fine after the accident.) Lost children fill our milk cartons and Facebook pages each day and that’s a special kind of sorrow, although most are stolen by one or other of the parents, it is still a scary prospect. We can be lost in so many ways and we speak of losing one’s health. Many other parts of life can be lost. Friendships, loves, other types of relationships can be sacrificed on the altar of failing health. Understanding must be there for us to continue and it often is not.
To be found can be the ultimate joy as we are presented to old friends, new friends, new vocations and undiscovered talents. Finding our way home is always a fine thing, don’t you think? No, it is indeed never boring here in the good old lost and found department.
Weekly Dose of Sue 
Sue I relate to that blog so much. I think that my choices of what to stop doing due to my pain issues has given my dad some fears about my isolating myself. I have talked at length with him about it over the years and I think he may understand a bit. Having mutual friends that can take my place at some functions and listen to his fears about my health (and occasionally explain things to him better than I can) helps. I wasn’t sure I would be able to attend a party with my dog training friends the other night (barometer change and needing my infusion) but I did go and not only had a great time but felt physically better afterwards. I do believe in the therapeutic effects of laughter. I have let friends help me more and am very greatful that I’m blessed with friends that want to help me. I work hard to not ask too much or too often so I don’t make them feel used either. I offer what I can to others such as being able to call me to talk 24/7/365 especially friends having health issues.
Laura, I know. It is difficult when you feel like your life is spilling over and affecting those you love. I know you don’t want to worry your Dad because that’s the kind of person you are. As a parent let me tell you…no matter what he knows, he’s going to worry anyway. Might as well fill him in. If he’s anything like you then he would want to know what you’re dealing with. I see that you must struggle with this. There is something about so many of us who are nurses…we want to take care of others even when we’re standing on a leg and a half. I know you are a good friend and have many good friends. It’s kind of a cause and effect type of symbiosis, don’t you think? It’s a fine thing when you can see and count your blessings as you do. Love ya, Sue
An interesting “take” on living with Pain and major changes in our life–you my dear Sue have opened up a BIG window that for whatever reason–suddenly feels easier to peek out and take a good look at being in the “Lost & Found Dept.” Its a place we have all been at–some of us will probably be bouncing in and out of this dreaded area of life~~but here is a key to not miss picking up! That key is the simple fact we are still even ABLE to take a gentle stroll through the LFD area—at times we will be crawling through and on the worst days–maybe we sit at the edge of those doors, wrapped in our agony-wishing we could look in the LFD, but know there is nothing left in our bodies on those bad days and we PRAY for the day to pass quickly.
I believe we are so Grateful as the next morning dawns and we realize~~~”Heh-I made it through the roughest part” and we smile with Joy because we ARE still here! Yes the things we once did are now reduced to a very small list, but at least there is still a LIST! We are struggling with the nonstop changes Pain brings to us~~~and there are days when all we can do is sit and ride through the storm that surrounds us.
Many times I have said ‘Oh what I would give for just One Do-Over Day” meaning if I could travel backwards, I would NOT have climbed up a tree, and fell so hard to the Earth—because that day is when I first met up with Chronic Pain and it was horrible! I have slowly learned there is no purpose served in looking back and tossing the “What if” over and over in my mind. I prefer to be here in the present life—no matter how bad the Worst days of Pain are—I am still here and life is precious!
Thank you Sue–this posting of yours will bring all of us to deep reflection………….. blessings, martha
Martha, yes, reflection, provocation of thought and action as well as entertainment. I think we need it all. I find it seldom helpful to look back and haven’t wished for a do over in ages. Life is now. There are always so many challenges each day, so many wonders to explore, so many friends to chat with and always the pups to laugh with.
We’re having sun right now with a cold and very chilly wind but it is lovely outside. I was just reflecting on our throw away society as we had a plastic settee blow over in our last windstorm and it now is a three legged settee. So much of life to compare, isn’t there. I’m thinking, oh well, we got several years use out of it and realize how much I hate it when someone treats me like my useful days are over and I should just “chuck it.” They don’t actually want me to jump…it’s more of a, “well, she’s not much use anymore.” I think each phase of our lives have purpose and lessons to be leaerned and shared…don’t you? Fondly, Sue
Sue, You have certainly found at least one purpose to keep going and that is this blog. You always manage to lift our spirits, give us a few things to laugh about and encourage us to find new purpose in our own lives. Thanks again for being you. Janet
Janet dear, well, hope your long driveway is completely ice free today. What an up and down summer you’ve had. I talked with my son in Dallas this morning and he commented on the crazy dips in temps and then back up again. You know, in all the time we’ve been sharing I don’t think I ever asked you what keeps you going.nI know it’s lonely for you at times and know you have deep pain and other problems but just wondered. Just coming on here to chat shows effort. Thinking about you..Love, Sue
Sue, I think that I am just to stubborn to give up. Also have dear friends and family. I am told at the gym that I am a role model for aging, I’m not so sure I deserve that, but it’s something to live up to. I have always been oriented towards the positive in life. I really don’t think I am lonely, I have never minded being by myself. I miss my husband very much, but even when he was here we both liked to have our own space. What gets me down now is that the pain never goes completely away. Some days are better, but it’s always there, that’s where you guys on the blog come in, I know that I am not the only one. There’s an old saying “misery loves company’, which is kind of morbid, but appropriate. The tremors are not so bad tonite, so this went on a little longer than usual. You take care now. gentle hugs. Janet
Oh Sue sweetheart, there you go and you did it again. You my friend are truly amazing. I needed this today because I do feel as if I’m in the lost and found dept. with Woody and slinky…… With all that seems to be happening to me so fast ( ? 2 years and 2 months later – duh?) right now I feel lost and cry, then I remember I will finally have my wish come true, just like a princess, I will meet my Rheumy and I’m so happy so I cry. I feel very unstable at this moment in time. I have to wait 6 working days then call them back to get my appointment with the Rheumy that is best for me according to my file. Well that is a bunch of poo poo. I read what was written in that file and not is all well there. Will have to set the Rheumy straight on that one. Sue any advice on how to do this in a nice kind way. Don’t want to step on another doctor’s toes. Or sound as if I’m not grateful for my family doctor. I’m sure there is a game to be played there as well. Maybe it’s all those pills that are making me crazy. Not sure what is happening with me these days but I’m certainly in the lost and found. We had one of those at school, and I remember cleaning it up with the help of some children. What a nice thought.
You are really my special angel, remember that song. Look it up and listen to it.
Love you to the moon and back, oh by the way it’s a full moon tonight.
Sleep tight my friend.
Gentle hugs and kisses.
XXX
Suzanne:
Don’t worry, when you get to the Rheumy he or she will take all your info, run all the tests and set his own opinion. You do however, need to correct what is not right in the file. Make yourself a list of things ot talk to him about so you don’t forget anything. I learned to do that early on. I am so glad you are finally getting to go.
Do take care
Love
Tonie
Oh my good dear, the nurse called me today to say I couldn’t go to the hospital to meet with a Rheumy there cause that is not where my doc wrote on the pages she gave me. I had to fax them yesterday so they called to say I have to go to a clinic for Osteoporosis. I told them that was not what I had but they said there is nothing they can do about that because they have , get this, one thousand people waiting to see a Rheumy. BIG SHORTAGE IN QUEBEC. She did calm me down though when she said there was a Rheumy there at the clinic. I now have to call on Monday , she was going to fax my papers to them today. That was kind of her, cause she could have told me to do it. Since I don’t have a fax that means going out to town. Not feeling great with the antibiotic I’m taking for my ear infection and sinus infection. They make me feel dizzy and out of it. Plus my ear still hurts even when I am taking oxycontin for the pain for the RA. Hasn’t been they best day but I had fun typing up the recipes. Maybe I’ll send more on to you but not today. I’m going to lie down, just so exhausted.
Take good care my sweets.
XXX
Suzanne, I agree with Tonie. Most specialists like rheumies, will make up their own opinions about you and your condition. Just remember dear princess…sometimes you end up kissing a frog. I pray this doctor will be a good one and help you, but just get organized, ask your questions and explain your symptoms…usually five is about all they want to deal with. If you get one you can’t communicate with, remember, there is a tadpole born every second or two. Just pray and hope..it’s better than it was a few months ago. Right? Fondly, Sue
Thank you both for the info. I will write down what I need to tell him or her. Questions and symptoms. Will keep you all posted. I feel emotionally drain. One minute I will see one for sure and now not sure when that will happen. Going to lie down. Later alligators.
XXX
Suzanne dear, I had a feeling because you were so excited…as well you should be about getting help but often we find ourselves on a circuitous route. I know that sinking feeling so well. Jim and I used to drive to LA, to Beverly Hills to be exact, I found a wonderful doctor there, finally but it was a three hour drive from where we lived and it was miserable, three hours each way. I had read articles by one rheumy and drove down there to see him and it was the worst visit I ever had. The man took 14 phone calls during my exam. I cried the whole three hours home and my tushie was killin me. Hang in there my dear. Seeing am obsteoporosis doc might be a way in to see someone else…Faith dear heart. Sue
Sue:
Wonderful ! I have been much thinking on the same subject. I watched a dvd the other day and laughed til I cried . This man is a Christian and he witnesses yet he talks about his life. (he is 69) and all the trials and troubles in a comical way. He is a slender man, well preserved. Yet at the end he shows us a picture of himself 5 years ago and he is a much LARGER portion of himself. He said he had retired, and stopped living. Seeing that photo, he understood he was still alive and he starting LIVING LIFE FULLY ALIVE ! I thought that said it all. We need to STOP looking back at the “what if’s” and suck it up and go on with the “here and now;s” . I have always wanted to be able to make things and sell them. Now I am, even if it is mostly for the one family I work for. I am going to start making quilts again, I am going to make my garden really produce this year (Lord willing) I have my friends, my work, my church, my animals, and kids. (not in that order of course) But all this makes up my life in the NOW, my past is gone, and my future is ahead. WHo knows what it will bring but for now, well I am going to do what I can while I can. Being ALIVE in what you are, and your PAIN is not who you are , it is a circumstance of life, a part of me. But now ALL of me. I push it aside to do what I can and take it to bed to sleep it off. It awaits me in the morning and we go thru the day again. It is not going away, so we have to learn to live together somehow. It is kinda like a parasite huh ? We have to come up with a symbiotic relationship (and we really can learn from pain) to get thru the rest of it.
Love you much and so enjoy your writing. God bless
Love
Tonie
Tonie ~
“It is kinda like a parasite huh?” ~~ That line really gave me a laugh! Yep, a leech that has latched on, and we can’t detach him, so we learn ways to limit his damage. He’s too small to eat us up TOTALLY, right?! 🙂
Blessings,
Trish
Trish, Indeed, Tonie is right. Sue
Tonie, I had this flash when I was reading your comments that this chronic pain is kind of like a Velcro pal…we can’t get it off so we might as well drag it along. We can’t give up. We don’t want to be defeated therefore we need to find the things we know we can do, expect the joy of productivity and there you have it. Like baking, we often have to use what we have on hand, right?
Hope all your chickies and rooster made it through that last cold snap.I’ve just remembered when I was a child in Pomona, CA they used to burn smudge pots of oil in all the orange groves when we had a freeze. Our petticoats would turn black on the edges from the soot in the air. Funny the things you find in your memories when you seek, isn’t it? Let us know how you’re feeling…hope a bit of snow blew on by you. Love, Sue
Hi Sue:
The cold came and left us a little snow, but it was warmish and sunshine today. Too bad it was “One of those days” for me. I had coffee with my brother and sis in law at Judy’s this am, came home and have been laying around all day. Just feel ucky ya know ? I guess the weather n all. My hips are getting more painful and stiff, I just pray it is from the cold weather. My shoulders are painful as well and that is not from the weather. I have another RA and ORtho apt the 27th so I will see what happens with that. I just had a half sand and some cottage cheese, and think a cup of tea will fit the bill now. I love tea at night, so relaxing don’t you think ? I can totally relate to the British tea time. I remember smudge pots in the peach orchards here. Yes, the memory has a way don’t it ? Take care dear friend. Know I love ya
Tonie
Well I called for an appointment with a doctor at the clinic – not good they say it might take months they just can’t say how long. Their Rheumy is off work with no date of return back to work. The lady I was speaking with told me not to call back, they would call me. She also asked me if I understood what she said cause it would get me no where calling every week. Guess she caught my English accent while speaking French. It’s the doctors that decide who they will see next I was told.
Well now you know what type of day I had.
It is very cold around here – 27 and windy. Brought Molly for a very short walk today but was happy to be outside in the very fresh air.
Tonie I really like what you wrote above me. symbiotic relationship. I am certainly not there yet. Parasite yes. I guess I just need a bit more time. It was a hard weekend and really thought I would be seeing a Rheumy soon. I still had hope last Friday. Tomorrow when I’ve stopped feeling sorry for myself and put on my big girl pants, I will be looking up private clinics with a Rheumy and I’m not sure they have that around here. Have no idea how much this would cost and I hate to do that because it already costs us an arm, a leg and a pint of blood for our health care system in Canada. I’m not sure how it works in the rest of Canada but in Quebec it is certainly not working very well. I’m at the point where this is not working for me anymore. I was 57 when this suddenly started and I will be turning 60 in a few weeks and nothing much has happened to help me feel much better.
On a much lighter note, Tonie I found one of my recipes I use to make all the time for the kids when they were going to elementary school. I will send it along shortly. Thank God for recipes. Love sending them, wish we lived closer you and I could put together a great cookbook for everyone and make enough to sell. What should we call it. It has to have a name. Don’t y’all think?
Well thanks for listening, it certainly makes me feel better coming on this site where you feel welcomed and people give you info to help you make clear decisions. You are all special in my life. hope everyone had a good day or as good as you could day.
God Bless
Love ya,
XXX
DEAR FRIENDS, I’M AFRAID I MADE A TYPO ON HERE AND IT CHANGES THE MEANING OF THE FOURTH PARAGRAPH FROM THE BOTTOM. WHEN I SPOKE OF AN 80 YEAR OLD THE LAST WORD IN THAT THOUGHT SHOULD HAVE BEEN HEALTH…NOT HELP. MAKES SO MUCH MORE SENSE. SORRY. MY EYES HAVE BEEN GIVING ME FITS AND I MUST BE MORE CAREFUL. LOVE YOU ALL…NOW ON TO CHAT WITH EACH OF YOU. LOVE, SUE
Natalie, thanks for fixing the above typo…Sue
Janet, I would have to agree with your friends at the health club. You do sound like a positive, ongoing gal. Look at Betty White. 92 years old today and she’s so funny and full of life. I am also one of those women who does not mind my own company but I can get lonely when Jim’s gone too much at work and I find I talk his ear off when he gets home; however, having said that. I’m honestly glad he’s still working. He is fulfilled and I have more time to rest and do what I do in this life. I see. it as a win, win but I do wish he’d take better care of himself. I was the youngest of four girls, with my nearest in age sis being 8 years older so I was pretty much on my own. I am sorry the tremors have been so bad for you lately. That has to be very frustrating.
Hope your weekend is a good one and all you want it to be. Fondly, Sue
HELLO…….THANK YOU SUE, I GOT A LOT FROM YOUR BLOG……….LIKE ALL OF US, I LOST MY WAY MANY TIMES, BUT I HAVE FOUND IT AGAIN, AND SOME OF THIS IS DOWN TO EVERYONE ON THE BLOG, WE SEEM TO GUIDE EACH OTHER, AND I FOR ONE, HAVE STOPPED MAKING EXCUSES TO NOT TO DO THINGS….FOLKS HAVE TO TAKE YOU AS YOU ARE, WARTS AND ALL, AND IF THEY SEE A SMILE ON YOUR FACE, AND THEY KNOW WHAT ITS COSTING YOU TO PUT IT THERE, THEY USUALLY STICK AROUND….THESE ARE YOUR TRUE FRIENDS, AND BY AND LARGE WE CAN CONTRIBUTE IN SOME WAY. GOT RAGING BACK PROBS TODAY, SO KEEPING IT SHORT, NEED MY MEDS AND A GOOD OLD CUP OF YORKSHIRE NECTAR……..STOPS ME GOING RUSTY, HA HA!! A PS. COMING UP…….MY JO IN AZ HAS SHINGLES, PRAYER FOR HER WOULD BE LOVELY, DOING MY BEST TO KEEP HER SPIRITS UP, BUT I KNOW SHE IS SUFFERING, SO I GUESS SHE REALLY NEEDS THEM……………..HAVE A GREAT WEEKEND, AND KNOW YOU ARE ALL LOVED………….GOD BLESS……………JENNIE XXXXXXXXXXXX
Prayers for Jo and for you my friend. Janet
Morning all ! Hope all is well with everyone. I am feeling much better today after a good night’s sleep and the boys let me sleep in til after 8 ! 🙂 My friend here gave me a pair of Carhart insulated coveralls. I used them today when I went out to feed and do chores. Oh boy are they nice ! All that got cold was my face and nose. My ears are aching now from being in the cold even though I had them covered. I guess it is all tied together somehow. I am getting ready to make some Lemon Pizzelles Fran is having her book club meeting next week and wants me to bake something for her. I thought I would try some of these and a Honey Bun Cake. Yummee, I love both of them. I am really gonna miss them when they are gone for 2 months. My cousin passed away yesterday from the cancer, I am so glad Judy and I went to see her on Wed. I knew she was getting ready to go as she had not eaten in 4 days. I am glad she is not longer suffering but rejoicing !
Well, on to other things, got laundry doing as well. Love to all and pray you all have a great day !
Love
Tonie
Hi all
Just a quick post
I’ve had the diver and as well I have had an infection of the ureter.no burning just pain and going etc
But I don’t feel too good weak and shakey. Plus I’m not eating for three days for the diver
On trimethoprim and spasmonal ,don’t know how I got the infection ..praps the op
Be back Chris
Chris:
I hope you are getting some sort of food in you . Do you have supplement drinks over there ?? Broth maybe even. I do understand the diver, but ya gotta keep yourself in fighting form. Prayers for you dear. Lots of water as well.
Love
Tonie
Hi all:
Well, there will be no lyrica for me. I got the sample for the week to try it out. I took one today, I got nauseous, dizzy and just sick. No more, not worth it. Made my cookies, and was exhausted. Watched a movie online called “Buck” About Buck Brannaman. WOnderful ma who helped and was the inspiritation for the character in “THe Horse WHisperer” . Wonderful philosophy of handling horses. He was a severly abused child, but went on to overcome and make a living out of loving horses. I have seen so much of the “manhandling” of them growing up and never agreed with it. You do more winning their trust and loving them. I can’t wait to start working with Mars in the spring to finish winning him over. 🙂
Very cold today, I will be so glad when Spring comes !! Just a little longer. Hope everyone is having a good weekend.
Love
TOnie
ps, I am starting to get some good recipes in. Keep em coming. Maybe you can go thru : snack, meal, desert .
Hi
Just a quick note to say that I feel like crap today with those antibiotics. Getting worse every day. Just can’t handle the fact that there are one thousand people waiting to see a Rheumy. I’m just so defeated. I just feel like crying all the time which will not solve anything I know. But I just can ‘t wrap my head around one thousand people. Oh Good God please help me…. feel down.
XXX
Suzanne I know that before I got to a rheumy that really got into treating me I was incredibly frustrated. Orthopedic docs can work with some of the issues and get you on the path. I’ve had good, bad and amazing doctors. This stage is temporary. Hugs dear one.
Sent from my iPhone
Thank you Laura for the info. I am praying for good things to happen.
Hope you are feeling okay, but I do know how much you do suffer in silence.
Gentle hugs Laura.
XXX
Suzanne I hope you feel better today.i can understand the helessness you feel.is there anyway they can triage you better to get further up the list i know you have been wating so long already ..would that count?
I’ve been on two lots of antibiotics recently and yep they make you feel like crap
Thinking of you and take it as easy you as you can
I’m sure Sue will have wise words here
Chris
Hi Chris, hope you are feeling a bit better – wow two lots of antibiotics. I have 4 days left (two pills a day) and I’ll be done with them. My ear is starting to feel better. Guess I have to put my faith in God for this Rheumy. There is nothing I can do to move things up and no it doesn’t count regardless how long I have been waiting.
You take good care of yourself and rest up.
Love you big.
XXX
Suzanne:
Just don’t dwell on that fact too much. Like Sue said, when you go and see this other Dr, that may lead you to jump ahead in the line. Referrals from other Dr’s carry more weight, and they can also help you. Not a Rheumy but they can help as well. Hang in there gal, prayers going up for you
Love ya
Tonie
Thanks Tonie. Hope you are feeling a bit better today. We all seem to be having a hard week. Not sure what is going on but we all have to hang in there together.
God bless us all.
XXX
SUZANNE, PLEASE DON’T CRY LOVE, AND DON’T BE DEFEATED, SOMETIMES THINGS WORK OUT BETTER THAN EXPECTED…..JUST YOU HANG ON IN THERE, WE WILL ALL PRAY FOR THINGS TO HAPPEN FOR THE BETTER FOR YOU….KEEPING YOU IN MY PRAYERS AND THOUGHTS, GOD BLESS YOU AND KEEP YOU SAFE…..JENNIE XX
Thank you all for the prayers, I really feel I need them more than ever right now. And you are all right, I will hang in there and expect a miracle! Something has to give somewhere at some point. I’ve asked my daughter to try and get me in with her family doc, maybe a second opinion would be a good thing. Who knows but I have to keep pushing for myself. I will not just curl up and do nothing, that s not who I am. THANK YOU ALL, you don’t realize how reading your notes have built up my spirit. God Bless you all and love you big, Sue hope your eyes are doing a bit better and you take good care now.
XXX
Yes Sue–There is so much to still be experienced and treasured, especially the simple moments that suddenly have us rolling in laughter.. I have a dear life-long friend whose precious Mom is in her 90’s and Sharp as they come~~~recently her daughter stopped by and told Mom–“We are going to the Audiologist today”–her Mom paused and asked “Daughter, why are We going to see the Archeologist?” Perfect moment…… there is the joy…..
Thank you Sue for sharing……martha
SNow this am, so church has been postponed to 11 am. I need to gout and feed th chicks now. It is cold but not too bad really. We just have a lot of older folks who shouldn’t be out in the cold like this. Had another restful night , for which I am thankful. Having coffee and watching Jack Hanna. Love that guy, he has such a good show on animals. He is funny though, cause he is afraid of so many of them, especially horses ! 🙂
Have a wonderful day all
Love
Tonie
Ps Sue hope you are recupped and feeling better
Have a good day Tonie. Stay warm! Sue are you recupped and feeling better? We all worry about you too ya know. I must say I know you are right,
it is a way into the system by going to see the other. I’ll phone them tomorrow a.m. to see how long it will take to get an appointment. I’ll let you know what happens.
Hope everyone on this blog has a great Sunday filled with joy. Chris have you started eating yet? Even a little something?
Martha that was a fun little account of your dear friend and her mom. Put a smile on my face. Thank you for that. Yesterday was a very hard day for me Martha. You helped me smile.
Jennie prayers sent to Jo, I know how painful Shingles can be not personal experience but my friend had that last summer and you could just see the pain in her face. And prayers for you too dear Jennie Poo.
God bless you all.
love and gentle hugs.
XXX
Yea started eating.have to not eat for the diverticulis sometimes for a couple of days.but back on the potatoes and scrambled eggs to start off with
Glad you are sounding better in spirit,that’s good
You get them sorted at the hosp tomorrow!!
Chris
Hello, everyone. I’ve been a little too busy of late and didn’t get on here. I think I’m caught up, but too tired for individual notes. Besides, I’m sure to forget someone and wouldn’t want anyone slighted. 😉 Prayers for all, especially those in more immediate need. I had hoped to relax and read a bit tonight, take it easy, but the kids need laundry done. Never mind both are capable of doing it themselves… Me thinks they are a bit spoiled. Now, if I’d ask, they’d probably do it. But why should I have to ask if they are the ones short of clothes? Does beg the question, doesn’t it? Only doing 2 loads tonight. The rest will wait for tomorrow and the day after or so. It’s been a busy weekend, yes, full of more singing at least in part.
Tonie, I must get recipes to you. I asked tonight at dinner what they like that I should send. They said I make so many different things that they don’t get many “repeat performances”, so I guess they don’t know what to suggest. I suppose I see their point. I do try to give them a variety. Hmm, I’ll have to think some more on it, I guess.
Hi Lyn, Hope you did find a little time for yourself. It always feels good to spend some time alone with our thoughts or reading…. How old are your children? Well you must be a fabulous cook. I find I get into slumps and don’t know what to cook anymore. But that has been for always not just since I got RA. Will be interested to see what you send in the end. Of course that is when you find time. You sound very busy Lyn. Do take care sweetie. You seems to have lots on your plate and doing a great job handling it all. Thinking of you and sending angels.
God Bless you
love ya
XXX
Dear Friends, What a weekend. Please forgive me for not getting on here to comment. I did manage to read and think of each of you. I am having a terrible time with my eyes hurting when I read. We have a 57 inch TV in our bedroom and there have been times I couldn’t even make out the faces. I have tried since Dec. but still can’t get in to see the eye doc, the only one we have here in town who is an MD. I have no idea what is going on but when I push it I get terrible headaches and pressure in the eye ball. I’ll get it straightened out in time, I feel certain, but having this is a severe aggravation, as you can imagine…sort of like someone taping my mouth shut. We all know how hard that would be for me.
Suzanne, I still believe you could start down the road and see any specialist available..not all roads are straight. Tonie dear, the vision thing is why I haven’t sent you my recipes as yet..already know which I will send. Brenda, thinking of you so much lately. Lyn, what a weekend but I know you voice was a blessing to all. Love the way your Mom complements you on FB. Hope you’re not too pain filled today…Martha, loved your cute story. Chris, time to give us an update. Sure hope the gut is behaving for you. Diverticulitis is so miserable. Jo, oh dear, shingles is another misery. Do know that it will eventually end, unlike so many of your other chronic pain issues. Laura, hope that new storm is allow you to defrost first. Pups okay? Jennie, sure hope you are feeling better now. Glad you have your trip to England to look forward to. Janet, keep moving sweet lady. Love to each of you and any I have forgotten in the moment. Today is Jim’s birthday…old coot. Kids are coming for dinner. Easier for me to make a pan of lasagna than to sit in a restaurant. Grands here today because it’s a national holiday here in the USA. Once again..forgive for my silence. I have eye drops and no word yet on the new injectible med for osteo. New insurance. Seems like we wait for so much all the time. Beautiful sunny day here but chilly. Love to each of you…Sue
Oh poor dear Sue. I know it is at best difficult having vision issues (had them at times too plus very nearsighted at best) I hope that an opthamology appointment can happen or at least an MD can provide some relief in the interim. Our autoimmune issues are complex and every time you think it’s settled down something else happens to keep it exciting. All is well here, my remaining dogs (all old too) are doing well as am I (well pain die to weather but still). I’m ready for the next system, this is winter in the Great Lakes and part of living here. We get cold, snow, freezing rain and wind but earthquakes are rolling and generally not noticed, blizzard conditions are hours not days, tornados are smaller, flooding not spectacular and no hurricanes. I’ll keep living here the rest of my life I suspect.
Laura, indeed, it’s one damn thing after another with some of these diseases. UGH! I know dear girl, you do live in a very interesting place. I know you are up to the challenge..changes and all. I realize it must seem strange to have all three dogs aging so much. I understand when I deal with our Jakie who is now 13, deaf and not seeing well. I know most of the time George is too much for him…grabbing his legs and you can almost hear him say, “Come on, let’s play.” Since you’re the dog expert in our group, do you have any ideas about George’s blocked tear ducts? It may be because he’s so small at five pounds. The vet did the eye dye test and they didn’t go into the nostrils or down the throat which explains why I took him in because his face is always damp with his tears. We’re currently trying some cortisone drops in case it’s an allergy. I added the homeopathic meds chamomillia. I’ve had great luck with it in various forms with our pets. Do take care…Love you, Sue
Sue:
Good to hear from you and sorry to hear your eyes are still bugging you., I pray you get it fixed soon. Well Happy Birthday to Papa Jim !! Another one under the bridge huh ? Glad they are coming over and you are not having to brave going out. The boys and I went for a little walk this am, not very far, my hip and knees started screaming. But it was nice to be out. Lots of wind today and supposed to get snow later. I pray it is not a lot. I have my Honeybun Cake in the oven. It is starting to smell good. I will share that one with ya’all. It is a good cinnamony (my word) recipe.No hurry on the recipes. We will get to them when we do. Take care and enjoy your evening with the kids.
Love ya
Tonie
Tonie, love the word cinnamony. Just what I like in a Honeybun çake or other things like just a slice of apple.
Yummy, you my dear lady are making me hungry again.
love to you!
XXX
Sue, so sorry you are still dealing with this awful eye trouble! A very Happy Birthday to that dear workaholic of yours!
Tonie, I think we are getting some weather tomorrow in part at least from down your way. I know it is coming in from S and W for us. They are currently forecasting 4 – 8 inches of snow and a profound temperature drop. I think I’m starting to feeling the initial cool ache indicating it’s coming. Oh joy. And naturally I have an appointment in the afternoon during the heaviest snow… Appt. today with my rheumy as follow up on the new med I stopped taking due to side effects. I wonder if he’ll think we should try something else or continue status quo for now. I guess I’d better shower soon and prepare notes for the appt. so I don’t forget something.
Happy Monday, everyone!
Oh Lyn, do be careful in that snow and let us know what the doc decides. I often feel so badly for all of us and the way we live compromised lives but in the next thought am also so greatly to know each of you and to share this life with all of you.
The kids and I just returned from the store to ge the ingredients for lasagna and also picked up two large balloons for the birthday workaholic. We got a HAPPY BIRTHDAY with colorful dots and a IT’S A BOY. Sauce smells delicious and got some fresh french bread and ingred. for salad…simple dinner. Sounds restful…Take extra care today, much love, Sue
AH Sue:
Homemade lasagna. French bread Salad. Haven’t made that in years. I used to make that for the kids a lot. Never could make a small amount of it. Always a huge pan. Enjoy and have fun !
Lyn, they are now calling for 2″ here, so hopefully not too bad. Making some tea and then a shower. Settle in for the night. Be careful out there tomorrow and good luck with the Rhuemy.
Love
Tonie
Oh Lyn you write everything down and don’t forget anything. That is what I do all the time. Actually I have a book going at all times. So every day I write something in the book, pretty complete when I finally go and see my family doc. Hope all went well with that.
HAPPY BIRTHDAY TO YOUR DH. That birthday supper sounds FABULOUS to me, he must feel very special. Let us know if you can how it all went. Happy you are happy it was at your house, less pain… get it. Hope you are able to see someone for your eyes.
Love you big Sue/ take good care my dear friend.
XXX
Mornin All:
Well getting ready for the nasty weather. My body is telling me for sure it is here ! :(.
Suzanne, so sorry indeed for all your troubles in seeing the Dr. Do look into other alternatives. I am so afraid our system is going to be coming down to this sort of thing.
Hey we don’t have to live nearby , we can collaborate on line and get this cookbook together. Give us something to focus on. I will share some more with you via email or FB okay ?? We can do some good things. It is 34 right now and the high is supposed to be 35, so no big whoop there. Gotta get the move on and get ready to go, have to go and pick up RX’s this am on the way in.
Love ya girl, hang in there . Praying for a way for you, God can open doors you thought shut !
Tonie
Hey Tonie that sounds great! I’ll be checking FB and e-mail. Man oh man it is – 30 here this morning. Just so cold outside and inside. I need to get dressed but hesitating cause of the cold. Wish I still had a wood stove in my house. Would start that stove up today and really get the house nice and warm. And while it was heating the house I think I would also throw in an apple pie. This electric heat is not as good. Oh well that was a nice little dream I just had with the wood stove. Great memories.
Do take good care of yourself sweetpea!
love you big\
XXX
HI FOLKS…………….JUST WANT TO STAY CONNECTED TO YOU ALL, BUT IN TOO MUCH PAIN TO WRITE MUCH, CAN’T BREATHE RIGHT, THE PAIN BETWEEN THE SHOULDERS SO HARD TO BEAR, SO GOT TO HANG ON TILL I CAN MANAGE TO WRITE MORE……SORRY, LOVE TO YOU ALL…..JENNIE XX
Oh Jennie poo, saying prayers that this too shall pass. You lay low now and take good care of yourself.
Once the pain has passed you will have to explain to me why you have pain between the shoulders. Is that Fribro? I’m not sure about all this but I’m sending a choir of angels to help you.
God bless you and I’m keep ing you close to my heart.
XXX
Hi my friends;
Sue, DH’s birthday party sounds like fun and I’m sure you had a good time. My DIL makes lasagna with sausage that is a bit spicy … nice change from the usual recipe, I am so sorry about your eyes. As you know I have blurred vision off and on and notice it most when I use my laptop at night. I have had ultrasound of my eyes and another test with a machine that can see the nerves and vessels at the back of my eye and as of yet, no diagnosis has been made other than inflammation … just don’t know for sure why I have it.
Suzanne, I am so sorry about your wait to see a rheumy! I have never heard of wait lists that long in Ontario. Some hospital also have rheumatology clinics where you can be seen more quickly. I am waiting for my first appointment with my new doctor because my rheumy has just retired, but when I looking for a new doctor, all rheumatologists in Ottawa were taking new patients with the exception of one who is very involved in drug trials that are underway. In some areas RA patients are followed by a doctor who has specialized in internal medicine. I agree that maybe you should see another GP for a second opinion and maybe they might have some magic tricks to get you seen sooner. The reason that you need a referral to see a specialist is to ensure that you really do need to be seen by that specialty, and to stop appointments that aren’t necessary, and therefore keep wait times shorter.
I have been experiencing neck pain, quite severe at times, but this morning is better so far, so I wanted to pop in and say hi!. Because I have not yet met my new rheumy, and maybe I should have taken this opportunity to call him, but instead I called my family doctor concerning my neck and was given an appointment with her husband who is a specialist in sports medicine. I was questioning if PT might help the pain and spasm in my neck. I know it has not yet been discussed on the blog, but with advanced Rheumatoid Disease (RA) there can be damage to the cervical spine. One night in December I could actually feel an upper disc in my neck (C-spine) slide out of place and back again. Since that time my neck pain has been worse and quite severe at times. At my appointment I was told absolutely no manipulation of any kind to my neck until they see the outcome of a series of x-rays which I had done yesterday. I already know that I have damage at C2 but something new is definitely going on, and instability at C-1 and C-2 can be dangerous … and the treatment is also complex and carries risks. Also, I have read that C spine involvement in Rheumatoid Disease carries with it an overall poor prognosis, but I have already been told I am severe and have advanced disease. I have been hoping the biologics had settled things down and they have been doing a good job at making me feel better, but one risk factor for this damage is prednisone use, and I have been taking prednisone since 2000, and at high doses when required for my eyes, lungs and vasculitis. and my bones have been weakened. For those of you who started biologics before they had significant damage, I’m sure the outcome may be different, and also, many RA patients never have damage at all, or their condition will never become as severe as mine … guess I am just a lucky one!
Must go and have a rest …. but I am thinking of you all, just can’t write any more right now!
Love and Hugs …Brenda
HELLO BRENDA……..OH DEAR YOU HAVE A LOT TO CONTEND WITH YOU POOR LOVE, CONCERNING YOUR DISCS ETC, THE WARM UP ON THE FLOOR OF A GOOD PILATES DVD, MIGHT HELP, I HAVE SIMILAR PROBLEMS, AND I REALLY BELIEVE WITHOUT THAT GENTLE WARM UP, I WOULD BE IN A MUCH WORSE PLACE THAN I AM NOW………JUST A THOUGHT, TAKE CARE……LOVE JENNIE XX
Hi Brenda, My sister lives in Oakville and my SIL lives in Grimsby so I know they just pick up the phone and have an appt in no time at all. Not so in Qc. Our new docs get their degree and get the heck out of here.
Wow, I didn’t realize everything you are going through Brenda. I’m speechless. I will have to re-read what you wrote to get a better understanding of it all.
Do take good care of yourself sweet Brenda. Of course I’m sure you are and don’t really have much choice.
Thinking of you and God Bless you.
XXX
Hey everyone ~ Prayers for all your situations and challenges. It’s definitely a challenging life. I sure do empathize with everyone, and wish your struggles weren’t so hard. 😦
I’m “challenged” right now as well, dealing with my painful foot/hip and also the anxiety I have over my husband’s disease. We go to see his doctor next Friday, and that always makes me nervous as there is so much to figure out, and the doctor can’t often answer definitively. Says this disease is very hard to predict. So, the prognosis is vague and unknown. The doc may decide to start decreasing the prednisone dosage, to see if the sarcoidosis is still active or has calmed down. This will be the big test. I hope that it doesn’t flare up as the medicine decreases, but we’ll just have to wait and see, and then deal with whatever happens.
So, I’ve been feeling overwhelmed with it all — the bills, our income, the questions about health plans, etc. Yesterday I was putting all of our paid medical bills in A-Z order, and finally just put my head in my hands and cried. Life is tough. I hope I prove to be tougher, because I’m a bit wimpy lately. In Winnie the Pooh language, I’m acting like little Piglet and Eyore combined. But….”those who wait upon the Lord will renew their strength” …. that truth is where I must put my focus.
Well, time to rest as tonight I’ve got the 5-10 shift. Bought some new “Klogs” shoes the other day and they seem to give a lot of support, so we’ll see how they hold up tonight. And, then the COLD comes! Maybe flurries and temps in the teens. That’s VERY COLD for me, since I’m from that warm state down south (Florida). Hope the rest of you are bundled up and safe and warm! Thankful for heated blankets and warm mugs of coffee & tea!! 🙂
Take care ~
Trish
Afternoon all:
Nana B good to hear from you. Sounds like you have another bunch of “stuff” coming on again. You get one things taken care of and another starts, like a car with miles on it huh ? Always prayers for ya’all. Did you use the hottub at the lake house ?? I forgot to ask. That sure does help my back. It is snowy and chilly here. We have had a strange day of snow, sun melting it off, more snow and so on. It finally started coming down hard so I left early to come home down the Mtn from Ms Alice’s. It was getting a bit slick in places even thought the roads are scraped n such. Take care dear.
Love
Tonie
TONIE………..HOPE THE SECOND RECIPE I SENT WAS OK, SURE COULD DO WITH A BORROW OF YOUR HOT TUB, IF IT CAN HELP YOUR BACK, MAYBE ME TOO????? COMING OVER TOMORROW, GET IT HEATED UP…………LOVE YOU…………JENNIE POO XX
Ahhh Jennie, the motor is shot and it is sitting in the cold waiting on me to replace it 😦 I surely miss it also ! But will revive it once I get my money !! Come on over anyway ! Yes the recipes are great. I have always wanted to try Yorkshire pudding so now is my chance !
Love ya
T
To all
We seem to have a lot of everything going on here. Suzanne you keep on on getting to the hub of the problem..you will find a road that you hadn’t thought would be there . Trish I sure hope the shoes were fine. I don’t think your whimpy..you have faced up to much.you are allowed some time to feel fed up
Sue…I do hope your eyes are better for you.and the birthday boy is doing fine!
Well my ureter infection has cleared ,apparently it was full of pus…ugh. But there was some blood in the last test so it went off to the lab and I’ve got to do another shortly.finished the antibiotics
But my tum feels all very tender
The diver got better with not eating as it usually does…but as I said all tender when I move..I think from the hysto ..,maybe the older you get it takes more than the three days it says to heal
Tonie. You keep warm there
Gonna watch a prog about king Alfred’s remains being found now from 899 , you know me!
All best Chris
Very busy on here again. Sue, Jim’s birthday dinner sounds relish! I’m trying a crock pot meal recipe I was given by a friend tonight – I think it’s a teriyaki chicken meal (I don’t have it in front of me). I’m looking forward to it. It smells good.
Tonie, it’s been snowing here since before 7 sometime (I got up around 7) and it’s getting windy. We are forecast 4 – 8 inches and it is to snow through this evening to about midnight, I think, then blow and drift. The boy just asked if I’d come pick him up from work if it gets bad so he doesn’t have to stay over there. I said possibly, we have to see how it gets. I had really hoped to stay in and have a quiet evening…
Brenda, I hope you get some good news. I know it could go any which way. Prayers.
Trish, prayers for your challenges. May there be a good outcome. 🙂
Suzanne, I did write everything down and still missed one thing. I may have to call. Usually works, though.
Jennie, concerned about you…
HELLO LYN LOVE,
THANKS FOR YOUR CONCERN, YOU ARE SWEET, I AM A BIT BETTER TODAY, MANAGING TO MOVE A LITTLE MORE FREELY. STILL FIND IT DIFFICULT TO REMAIN IN ONE PLACE TOO LONG, BUT WILL GET THERE IN THE END….LOVE YOU…………..JENNIE XX
Wind chill as low as 16 below tomorrow??? NO THANK YOU!!! This is going to be another rough week. 😦
Now I’m reading some forecasting colder than that. I sure hope they are wrong. I think I’ll stop looking at weather forecasts now. 🙂
SUE AND CHRIS…….BEEN IN TOUCH, SO NOT MUCH TO ADD EXCEPT, I HOPE YOU ARE OK AS I SAID IN MY F/B MESSAGE SUE, PLEASE TAKE CARE OF YOUR EYES……………..LOVE YOU……JENNIE XX
Jennie, sure hope you are feeling better! Thank you for the suggestion to warm up on the floor but you see, if I ever got down on the floor I would need two men to lift me back up! My ankles are fused, I have replacements in both knees, one total hip, right total shoulder replacement and a plate in my left wrist so t doesn’t bend and have had numerous operations on my feet and hands. If my neck is now unstable the surgery would be very complex …. but on a positive note my neck feels much better today and although I can feel changes, it is possible I have had a bad case of tendonitis! It is very difficult for me with my grandbabies. I have never lifted any of them, but I can sit and hold them when they are very little. As toddlers they would come up to me and put their arms up and I would have to say no and it broke my heart because I knew they didn’t understand and of course I can’t baby sit them without my DH with me. My right hand has three fused fingers that don’t bend and can’t extend the fingers on my left hand so I can’t even change a diaper by myself! I also have compression fractures throughout my lumbar spine from the steroids I have had to take for inflammation in my eyes, lungs and vasculitis. I was very ill in 2002 and spent seven weeks in hospital and there was concern I might never make it home again but I am here and feel blessed that I lived to meet my five beautiful grandchildren. We were beginning to think we weren’t going to have any but we have had five in the past four years so it has been very busy! I do drive a bit again now that my shoulder is replaced, just around town, but I can’t drive the little ones alone because I can’t lift them into their car seats and I am unable to fasten their seat belts because of my hands but I love them all to bits!!!
Chris I have been trying to figure out what “diver” is but I finally got it, lol!
Can’t do anymore individual comments today but you Are all in my thoughts and prayers! PM
Brenda, now everyone can see again why you are such an inspiration to us all! Hugs, dear lady!
POMMUM…….SORRY LOVE, DIDN’T REALIZE YOU WOULDN’T BE ABLE TO GET BACK UP AGAIN.
SUE…HOW ARE YOU
TONIE ….GET THE TUB UP AND RUNNING SOON
CHRIS…..JUST WHEN I WAS GETTING OVER THE BACK PROBLEM, NOW GOT THE OLD FRIEND BACK FROM THE SHINGLES, THE PAIN IN MY JAW/EAR AND WHERE MY TOOTH USED TO BE, MAKES ME WANT TO GO TO BED, PUT MY PILLOW OVER MY HEAD AND HOWL….DON’T KNOW WHAT TO DO EXCEPT BLOODY PARACETAMOL……..OH MY.
LOVE TO YOU ALL…………..JENNIE XX
Jen
What the hec is going on?!
Why would it play up again ,does it get left over and hang about?
Here’s hoping it goes pretty damn quick!
Weather rainy and has been squally.looks dull for the next few days
My dad not too good..choked on a piece of rice..gets caught with his swallowing
But his speaking is so ..well like being drunk but worse and can’t Make it out.also it’s all gurgely.he spends a lot of time in bed
He Wanted some cough medicine,but I got just simple linctus.he wanted to stop coughing but I didn’t thing that was a good idea…to stop him incase that reflex is what he should have.
Ok be back Chris
Dear Friends, Finally got in early to see the eye doctor and it isn’t good. My Sjogren’s syndrome has dried the eyes to the point they are fried…not fried as in a burnt engine but fried as in a steak on the grill. I had a thorough exam with drops but they didn’t dilate because the eyes were so damaged, sore and red. I am now on eye drops every hour alternating saline, cortisone, allergy drops and thicker ointment at night. She suggests I cover my eyes when I sleep so have ordered a sleep mask. Oh my, what a pic I will make with dark, dark glasses over my glasses all day and a cervical collar and sleep mask at night. Might as well dye my hair green and put a red feather in it. This whole business is very painful and I always end the day with a throbbing headache so please forgive my absences from here of late. I pray this will work out for me and the doctor has other ideas. At our large university eye center in Portland they have a new procedure in which they draw your own blood and put it in a centrifuge and make a drop or ointment out of it and that seems to be helping severe cases of dry eye. We’ll see where this road leads..seeing it is the important part. The unseen I leave to the good Lord.
A new blog should be posted today but it’s a bit shorter than usual. I’m concerned about so many of you and you have my love and prayers. Please remember that…Loads of love, Sue
Dear Sue, Lots of positive thoughts and prayers going out to you. I am also concerned about so many of our friends right now. It seems so many are going through real bad times, more so than usual. Don’t know if it is all this bad weather or just coincidence , but I don’t remember a time when everyone was having serious problems. Anyway you are all in my prayers. Could use a few myself. Janet
Sue, so sorry for your misery, but at least you now know what’s going on. And a new treatment possibility to explore that’s, well, relatively close. Prayers will continue for you. Will check out the new blog in a bit. It matters not what length it is. Maybe I’ll have a better time remembering it all. ;). Hang in there! Hugs!
My dear Sue, your are going through such pain. I can’t even imagine it. Prayers are being sent your way and also onto the doctors which will be finding the procedure that will certainly help you. Positive thoughts. Even though you are in so much pain you had me laughing thinking of you with green hair and red feather with mask. You a a special person my friend.
God bless and may all this go quickly.
love ya big.
XXX