Everything will change as no area of life is left unscathed; flowers have their day, trees have their shedding of crispy dry leaves and every daylight period turns into dusk.
We will become adept at expecting the new bud to bloom, the new leaf to unfurl and the new dawn to fulfill itself. We know we must expect to look harder, longer and more vigilantly than a healthy individual.
We may have less bloom, slower budding and later dawns but they will still arrive.
Socially, economically, and of course the obvious, physically, life will be stamped with change.
We must acknowledge the presence of pain from disease, pain or disability from an accident, as falling equally upon all mankind. To see one’s self as the lone sufferer is destructive.
If we do not realize our burdens are also carried by others, we become bitter martyrs and life has an angry edge. That state is to be avoided by whatever means possible.
We agree to accept our circumstances with as much dignity as we can muster, with as little self-pity as possible, precisely because we know we are not alone in our suffering.
We retain the right to occasionally slip and feel the need to indulge in self-pity at a pity party but will attempt to make it a brief party and not a vacation.
Whining is allowed but monitored as one looks for clues when one’s friends and relatives run screaming into the streets. We agree to acknowledge they cannot truly understand our experience but will try.
We still retain the right to pursue life, liberty and happiness in spite of living with daily inconvenience, pain and too many alterations to mention.
We fully realize we were not promised a garden of roses, but didn’t plan on a garden of thorns, therefore we shall be armed with a box of Band-aids at all times.
We the residents of what will be called Pain Valley will attempt to live in such a manner which constitutes our happiness and the happiness of those around us, often under difficult and nearly insurmountable odds.
We claim no special considerations except humanitarian understanding as our fellow travelers on this quest for the best possible life under the most difficult of circumstances.
We would appreciate being treated like everyone else and will endeavor to return the favor. Because we live with daily pain does not make us stupid; most of the time our brains are as fully functional as the average healthy person’s. We usually are, however, distracted by our pain, medications or fatigue. In actuality, our depths of understanding and sensitivity are more highly developed, due to our suffering.
We retain the rights to our education, our families and our original intents based on our talents and God-given goals in life. We just seek the indulgence of others while we figure out a new way to attain these goals. It can be very tricky and may require new means, different modes of thinking or even an occasional eccentric method, but we will get therewhile clutching our faith tightly to our breasts.
No, we aren’t nuts, neurotics, malingerers nor crackpots (in most cases.) We just have to invent a new life now and then because nothing is easy, so best to stay out of the way of negativity.
If we are unexpectedly quiet on occasion, it may be because we can’t believe some idiotic remark some outsider just made, can’t believe their expectations or are holding our tongues and hands to keep from injuring insensitive morons.
We retain the right to kick, scream and throw an occasional hissy fit based on our level of pain and our tolerance on a particular day. We know others will not always understand, although it would be helpful.
We acknowledge our zest and lust for life has not changed; only our bodies have morphed.
We will promise our fellow citizens the same considerations we expect; full disclosure when pertinent to a specific event and a sincere attempt to keep our inalienable right to whine at a minimum level.
We declare there are going to be times when it is best to get out of our way, those of you who do not live in Pain Valley. Please keep your opinions to yourselves unless you can assure us, they hold some profound wisdom unbeknown to us. The only exception to this premise is for physicians, other medical personnel and loving spouses and even then we still retain our rights to our own opinions.
We, the residents of Pain Valley, taking all of this to heart and mind, therefore acknowledge the daily challenge which lies before us.
We pledge to each other our lives, our fortunes and our sacred honor and pray our differences will not cause a chasm to evolve between us and all that we hold dear.
God help and bless us all as we rely on Him for our daily bread, our moment by momentstrength and immense courage to face each approaching day.
BTW the polar plunges took place…..they’re nuts but raise money for good causes
I thought I wrote a comment but it seems to have disappeared. This was well done. I’m getting more skilled at keeping my mouth shut or saying what people who are superficial to my life want to hear. It helps spending more time home with the dogs or with folks in like situations.
Bobsled, are you telling us the weather is allowing you to hide out? I do a lot of that as a simple part of my lifestyle. Sometimes this whole mess is just too much and we have to take care of numero uno or we won’t have anything left. Hope you are staying safe in all that amazing weather and pray the power has stayed on for you and the pups. Love, Sue
I’m staying as safe as possible here in Michigan. Last week virtually everything was closed at least a few days from schools to restaurants. The state and county governments closed. The mail delivery cancelled, garbage collection cancelled both for at least 2 days. I left the house one time for groceries towards the end of the week. I however am staying home more due to issues with pain control. Michigan actually declared gabapentin a controlled substance despite it not being controlled nationally. That med had been increased because of the extreme decrease in my opiate pain meds and decreased diazepam for my muscle spasms secondary to the ankylosing spondylosis deformans. I can’t increase my NSAID because my kidneys are just starting to get annoyed and I rarely of ever use prednisone. I supplement with valerien root for muscle spasms and full spectrum CBD from hemp. Marijuana is legal recreationally here in Michigan but my codeine and diazepam will be discontinued abruptly and could lose my primary care physician if I test positive. The increased pain of course makes sleep even more difficult and the fatigue has increased as well. My house looks like a bomb went off in it as vacuuming has become very difficult as well. On the other hand my little rescue Pomeranian adores me being in cuddle position nearly all the time.
Loved reading 5his Sue
I think I’m on that angry edge waiting for that late dawn..but it always comes , there’s always one around the corner
Seems to be one thing after another tho
How’s where that injection went into the wrong bit ,you haven’t mentioned how it is now .i expect it’s become mixed up with everything else happening to you
Hi Laura …I could do with some of that mouth shut malarkey !
Chris dear, I am sorry to hear things, gut wise particularly, have not calmed down for you. I must state again how much I like that last cookbook I mentioned to you on the last blog. It covers most of the slow motility and problem areas of the gut and the recipes are good. They lay out some guidelines for eating that you and I have already discovered for ourselves over the years, i.e. smaller meals are best and more often, certain food are bad and they list them, etc. I know you would find it helpful as I have.
Unfortunately the nerve that was damaged by a shot being given too low on my hip is still acting up everyday and will probably never go away entirely. It happened five months ago and if it was going to heal, I think it would have by now. Another thing I just have to live with. Do be good to yourself my dear, Love ya, Sue.
Sue, my dear friend, your wit is only surpassed by your intelligence, compassion, and insight. I love you, sweet girl. xoxox
Phyl, you are always so complementary to me and my words. I pray you are as well as can be and happy at this time. Reember when we were kids and we said, “Takes one to know one?” Well, ditto my dear. Love you and thank FB for meeting you and your friends. Sue
I know we spoke on FB about the gabapintin, so ridiculous. I understand their are people who are addicted, but….there are responsible people who need help …from meds.
I hope you stay safe in the cold and get to feeling better.
So much of this hit home for me. The problems with my pain meds, the ridicule from today’s people (ignoramuses) who are finger pointing if they know you take pain meds. I even had a RN tell me I had to be addicted because of the years I have taken them.
Now I am having to miss injections of Enbrel because rules changed and no one felt they should inform the Dr or the patient. So far I am ok, but feeling a bit sicker than usual. Trying to stay busy because it keeps my mind off things.
The weather here is incredible. I m loving it , but….Friday it is going back to cool weather.
Hope you all are well and happy
I am so sorry, Tonie, you are still having trouble with the med. I know what you mean about others. We have all run into our share of ignorance and sometimes it’s close to home, like old friends and family. As for me, I get tired of always complaining but the truth is the truth. This way of life is hard.
Still cold out here with ice last night but nothing like your cold, snowy spells. The wind can really make you catch your breath however. So chilly. Still gut trouble here..Very bad the last two days, living on hot jello, broth and Ensure. Hate it and waiting for it to improve. Love ya, Sue
Oh Tonie. I’m so disheartened hearing you having to fight the biologic battle. I get how discouraging it is. You start to feel like you can do some planning as you have some little bit of hope then BAM insurance changes everything.
So appreciated this although I’m lots better but full of cold at the moment. Big changes going on in my life in the next couple of weeks so lots to keep my mind off discomfort and pains. Thoughts are with you as always.
Alison, RoseTint, hope those changes are going to be good ones. , Hope your special son, Simon wasn’t it is doing well on his own. Pleased to hear you are physically better. Good to keep in touch with you, Fondly, Sue
Yes they are good ones. About to move to a lovely part of derbyshire. Will be writing about it soon. Lots to do and still having to oace myself but getting through it gradually. Simon is doing great which is why im able to take a leap of faith. Take care x
Bobsled, Gees have you all been through it in your state. So scary. Isn’t that nuts about Gabapentin? I do not personally like it and took myself off it because I think it made my thinking and memory more muddled. I do occasionally take just one at night for spasms, but not usually. This whole situation for us, the chronically ill, is just getting more and more strange. I think we have too many politicians interfering when they are not even qualified to hold an opinion. Glad you always have your cuddle buddies, big and small. Love, Sue
I’ve actually titrated my dose down to a third of what’s prescribed. I still need it at night with my leg and foot pain and muscle spasms. I’m getting reasonable help from CBD from hemp. It’s always something.
Alison, All sounds good, happy for you and Simon. Derbyshire? I remember seeing it in an English film or two. Love them and your lovely country, although all I’ve actually seen in person is Heathrow airport. .I’ll check for pics on your blog. Love, Sue
Bobsled, I have found a good foot soak with hemp and several other ingredients. It’s a salts you put a small amount into hot water and it helps me get through the night with painful feet.. Empowerbodycare.com. They also have a neat roll-on hemp oil applicator. That’s so bad when you can’t sleep, I know. Love, Sue
Loved this story Sue. Never really wanted to move to Painville but that’s where life has brought me. I am awake as usual because I am also being tapered from methadone that I have been on for 12 yrs. I am in withdrawals as we speak and cant sleep. When it is done I will be fine from 90 mg to 20. I am on 40 at the moment and I feel I am being tortured. I have RA and Lupus and I did have a life in Painville but now I can only hope to just be able to get off the couch so I can once again take care of my house and take my furbabies for a walk when I can.. If at the end of my taper I’m not able to live a life without unbearable pain I cant promise that I will still be here when theres nothing left for me . Love life but this isnt life. Sorry if this seems so depressing but I’m just being real. You are an inspiration Sue to me and a lot of others and I can only hope I find the strength that you have shown. Praying for all that are suffering.🙏🙏💖💖
Doris, I appreciate your honesty even if it is very sad. Withdrawal can be hell. I just hope you are getting adequate guidance and some medical help through this by a wise and caring physician. You need to ask him/her what the plan is for helping you once you get through this withdrawal stage. Methodone is, for those who don’t know, one of the drugs they use to get people off of the heavy stuff. How did you get on it to begin with? It’s terribly important for you to be under guidance for this difficult time in your life.
You need some reassurance that someone is going to help you through this afterwards so you can live with these diseases. In extreme cases marijuana can be used if you are in a legal state. Many use it for terminal disease and the extremely painful conditions.
I am also concerned about you getting support from family or friends. You sound alone and I pray that is not the case but that you at least have a loving spouse or partner. When I worked as an alcohol treatment nurse, many patients found some relief in taking L-tryptophan. It is a naturally occurring enzyme. You should give it a try after checking with your medical team.Don’t look so far down that road…don’t borrow trouble. Try to get in the habit of living for one day or even one hour or night at a time. So much of my own strength comes from doing this and believing in a power outside myself who loves me and will guide every little detail of my life. Some of this is the power of positivism, I know, but I also believe in a great power or source of goodness in this often tragic world. I have often had days when i did not care if tomorrow ever came, but I pray and think of my family. I also ask for a sign of God’s presence in my life and it always happens, even on the worst days. Go sit outside if the weather permits and if not, go for a drive or sit by a window. Buy something beautiful like a new book that is uplifting or a blooming plant. There is power in all living things. Lastly, please keep in touch and let me know how you are. Are you a facebook friend? If not, send me a friend request, please. Doris my dear, I care and send prayers and if you were closer a hug. Fondly, Sue
Thank you so much Sue and I have been going to a pain clinic for 12 yrs and they started me on it for pain. They do suprise urine tests and call you randomly to cone in for a pill count. I have never failed one test but now because of all the overdoses they are taking people off or tapering them to a really low amount. I didnt know at the time that methadone was one of the hardest meds to come off of .I am normally a strong person and I’m just hurting emotionally and physically and also angry that what others have done wrong it is being taken out on pain patients.I do not have support from family but I’m used to that. I do everything for myself by myself. I am really relying on my strength and faith to hold on and push through and see somewhat of the old me come back I pray when this is over.Thanks for listening. Hugs xx
We all understand your pain and frustration. I urge you to contact your Representative and Senators regarding this humiliation you are enduring. I did so with mine and although nothing may come of it, I use my voice. I spoke with my Rep yesterday and to,d them what we are going through. I had my RX refused at a Walgreens , telling me they were saving their meds for their regular customers. I am filing charges against them with my state’s AG.
We need to speak up for ourselves. I pray you find comfort and the assistance you need.
Excellent, Sue. Actually, my family knows it’s bad when I go completely silent. That’s when pain is at its worst. We’ve been enjoying some of the same warm temperatures as Tonie and it’s been a blessing. Well, except for yesterday’s rain. I did get chilled and it was difficult to get warm again. Although I try to use as little as possible, I am finding myself using more meds and ointments this winter. I’m so sorry that nurse’s mistake will likely be felt by you for the long term now. You didn’t need one more thing. Allow those sweet furries to distract you as much as possible.
Chris, you are in a gut nightmare. Each time I check in here I hope to hear you are feeling better.
Bobsled, hang in there. There really should be a better way of regulating meds based upon doctors’ recommendations, not some other person’s inclination. Glad you are staying safe up there. Crazy winter!
Tonie, so sorry to hear you are having additional meds woes. Nuts!
Rosetint, best wishes for your move!
Doris, prayers as you continue your taper. May you find peace and pleasure in your life going forward that will inspire you for more.
My prayers for all.
Lyn, I always feel good to know you enjoy something I write. I am so pleased you got a break from that hideous cold spell.
Yes, the old silence does beat complaining and often brings more compassion. I often talk too much and when I get quiet, it makes Jim nervous. Yes, it is brutal that I, a nurse, had to have a lousy incompetent injection that damaged my sciatic nerve or some nerve from the hip to the calf.. I try not to get too angry about it because that gives me atrial fib to get upset so I forgive her and seek to live with it via hemp oil rubbed on and cannot sit on the edge of the bed or a hard chair.The oncologists suggested alternating heat and ice and I do occasionally, but now after all these months, heat is the best.
Looks like we’re in for some snow this weekend. Sure hope Jim can get our new TV he is buying right now set up tonight. Ours has a huge black shadow in one corner so it is a goner. It is the one in the bedroom and we now have a 55 inch which is great. Don’t want to go any larger; who wants to look up the nostrils of the folks on the TV? Take care my dear and get over that bug you have ASAP. Lots of Vit. C, juices and hot tea. Love ya, Sue
Thank you and to you the same.🙏💗
Busy week here in the wonderful weather. Today is cooler and very windy which makes me hurt all over. No swim today because we rode bikes yesterday on a soft trail. Felt like riding on sand on the beach. Good workout but I am very sore today. 5 and a half miles felt like 20 ! But it was such nice weather. My birthday. I don’t remember ever being out in shirt sleeves on the 7th of Feb. today is my son’s 41st. Seems impossible my baby is that old. I sent him seeds for his flower bed and garden for his bday. Easy and cheap because they were all from mine saved last year , lol.
Chris, hope all is well with you. Lyn, glad you are enjoying the weather as well. Still looks good although cooler.
Sue, my tv you can see the lights behind the screen, so I am afraid it is going as well. My daughter usually gets some iceones from storage units she buys. So I am holding out, lol But if it goes,I will have to bite the bullet.
Take care all
Well the other day anyway
Good you had a good day out with B and sun shining..what more could you want..
Dh has had a severe ear infection which had spread to the bone ..they were concerned and he’s on antibiotics now and seems to be improved..it’s his only ear he hears with so it was worrying..and they said they were concerned it would spread…and to look out for a swollen red bone..but all has settled…hopefully
Hope you got that tv sorted. Ours went on the blink..lost some channels had to turn it off at wall for ten mins and press some button.and hey ho it was on again…love the old TVs you just switched on….And they worked !
Hope you get some more help with this tapering off…it’s not fair that you have to suffer for others who misuse .you would think there was another way to go about prescribing them
Love Derbyshire my dad used to go up there to live a lot when small around Ashbourne..and so I’ve been there a lot in the past revisiting dovedale and the stepping stones…although redone there now
I’m envious it a great area to live you will have happy times
Your right I was in a gut nightmare …but it is settling sort of…but still keep to the same safe food
Hope all doing ok in your family
Chris dear, I was so sorry to hear about your DH’s problem with the ear. Osteomyelitis is so scary and hard to cure. Pray it is going well for him now. I can’t even begin to imagine how frightened he was about losing any hearing he had left. Seems like you guys have shared some of the weather many of our friends have had in the east here. We had snow but just for two days but a bit of everything. Now back to rain tomorrow.
So much better today after watching my diet very closely. I went for the last two weeks eating only jello, chicken noodle soup, Pedialyte and crackers…oh yes, and Ensure strawberry flavor…no seeds in that. I still highly recommend this cookbook THE GASTROPARESIS COOKBOOK by Karen Frazier. Made chicken veg soup last night and no cramping all night or today.
I know life has been more of a challenge for all of us lately…spring…we’re more than ready for you. Come quickly please. Love to you Chris, Sue
Chris, prayers for dh and his ear. That has to be a worry with it his good ear. B. Just had sad news from a good friend’s wife. She has terminal cancer and not a year left, they say. His friend lost his first wife right before we met 3 and a half years ago (time flies). So prayers for them please.
Me, still waiting on my meds Enbrel. My paperwork instead of being updated, was closed out, but I spoke with a supervisor who assured me two days ago, it would be put thru. Called back yesterday, same promise. Going to call again in a moment and see what they say today. Starting to feel really bad again, like before I started it. If nothing today I will contact my rheumy and suggest we try a new medicine. Life is tough sometimes. Going to the ortho today. Another injection in my shoulder I Hope. Got the co pay bill for my knee and it is $150 ! Soon more of those in the near future !
My great nephew is graduating from the Virginia State Police Academy tomorrow and my sister is traveling to Richmond with his dad . So proud of him,but please pray safety around him. So much violence towards the police these days. And he will be primarily of the highways patrolling. We just had one get shot and killed here where I live in a traffic stop. Young man. My other nephew is attending the Academy for County Police. He will graduate in May. Great demand these days for policemen and women. Good pay and retirement, but dangerous work.
Well, I mustget going, very windy today which makes me feel even worse. Hope you are all ok. Lyn keep that snow up there please !
Tonie, I think we shushed the last nasty batch of nastiness to the northeast. We had a progression of snow into sleet, sleet and freezing rain for a long time, finally rain. Today we just had a little snow squall go through. Pretty, but harmless. I had a rough weekend up here, too, on top of a lovely head cold DH shared with me. Still have it. Over a week now.
Lyn, Oh that’s just what you needed, a head cold…not. Lots of liquids and stay warm. Try to talk your determined little self into the fact you will get better sooner if you rest. Love, Sue
Tonie, That whole bit with the Enbrel is maddening. I know you must be at your wits end over it. Liars, lazy, etc. They should or could be politicians. I think trying another one will just start the journey again for you because this one took awhile to get started as I recall but then again, it could be easier. I think it stinks that we have to go through so much when we feel like crap. Hope the weather gives you a break and spring actually sticks around for you.
How awful about B’s friends wife. I hate it for all who love her and for her to get so much doom and gloom without hope. I don’t trust doctors who give that kind of news without hope. Some days it does seem like all we get is bad news. Tell B his friend and his wife will have my prayers. Miracles happen everyday.
I know how proud you are of the fine young men in your family and share that pride. We are becoming such a lawless society it is frightening. I was reading on FB about a Sheriff who gave up and told folks to get a gun, lock their door and get a dog. Did you post that? He’s down in Kentucky somewhere. Sometimes it feels like we are going backwards into the old West but there were more ethics back then than now. It’s so important when we’re hurting that we don’t get sucked into that wretched vortex of hopelessness. I chat with folks each day on FB who are so discouraged by the pain and understand so very well.
I feel well for the first time in three weeks because I am following the recipes and suggestions in that cookbook I mentioned on gastroparesis. I just made a batch of coconut flan with one of the recipes…lying down now, but hope it will be worth it. I have learned to be happy with just a couple of hours up and doing each day but am determined to get my home cleaned for spring. I am slowly working on my closet and giving crap away with the help of the kitty who thinks everything is a plaything. George still scares him and we’re still playing musical pets but they both bring so much joy to us. Sunny here today for a change with more rain tomorrow. Oncology for me tomorrow along with IV for bones. Forgive my quiet of late…felt too bad and didn’t want to share it. Much love, Sue
Glad to hear you are feeling well again. Too bad I am not nearby, we could get that house done inno time. So….meds finally got approved today. Will have them on Friday. Ortho says my pinkie prob is a trigger finger that he can fix quickly in the office. I will get it done soon. I have Judy going for cataract surgery the 21st, B is leaving the 27th, so I will wait until things settle down again to take care of it. It’s just startedand not that bad. But, he is on,e about getting the carpal tunnel test done, irreversible damages. Sigh…..so much I Life is just hard at times. And it seems to dump all at once doesn’t it ?
Well, tired. Talk to y’all later
Hi all, Dorothy is me but ignore, I’ll change it soon….Sue
Well dh finished the meds then the ear infection came back so on even stronger ones now
Also the plastic surgeon not keen on doing any plastic surgery around the eye with him having to take warfarin ..so have to go back In a few weeks and do more hot massaging with stuff
Small chance but dunno which way to turn with it all really as that’s not going to stop the eyelid turning in on itself
Glad the recipes are working Sue ..donno if I got the same as I’m always rushing to the bathroom
Hope that time after the 27th goes quick Tonie …what with Judy and her surgery as well
Met dd today half way had lunch and a bit of retail….always good fun and a quirky time.does me good to see life how she sees it
Do you remember how you felt as a kid after seeing a film out ,sort of new and fresh after and bouncy ….I remember feeling like that after seeing Oklahoma….ages ago I know!
Right gonna try and sleep if I can nearly 11 pm here
So sad about dh’s eye. I can imagine how hurtful and irritating that would be. Hang in there. Yes, I remember Oklahoma. Made it want to dance. Rocky, made me think I could conquer the world. Where are all those good movies today ? Watch “I Can Only Imagine” beautiful song and the story behind it. First time I heard it I cried happy tears, at work.
Finally got my Enbrel back. Took everyday phone calls but….. now maybe I will start ,feeling better. Rainy, some freezing, and yuk today. No church, so…..
Glad you got the meds you needed
How’s the antibiotics and the Lymes going
Fingers crossed the ear infection seems to be going ok,see how it goes when meds finished
Yes it was an uplifting song and I will watch out for that film
We need more films where we could feel like conquering this old world…
It must be coming up to B going back for this op.I do hope there is a time span for you to know before he goes.
Weather not bad here..gives it up to 63f by the weekend
We both did a bit in the garden today..it was good dh felt like it
Had a scone this morning…
Had to go to take some photos for the museum they want dh to then turn them into pen and ink sketches..for a walk around they are doing
How’s you sue.and the ibs ..how’s the recipes from book going
Me I’m still eating same food..just had pasta and grated cheese
I found a nice plain yogurt I like with just sugar no added stuff..a Greek yogurt,it’s nice and creamy
Hope all going as good as..