Those of us who live with chronic pain each day of our lives, have so many issues to deal with; as if the pain isn’t enough? In the Fairness Act written by Mother Nature, Fate or the Devil, they didn’t cover that little clause of how much misery would be doled out and to whom. Somebody screwed up when handing out the pain because some of us got too much. Don’t misunderstand me. I would be more than willing to give back all of it or even share it, but would that be fair? There’s that word fair again.
One of the additional little jewels of unfairness in my life is one brought about by one of the rheumatic diseases, still unnamed. I have been diagnosed with several of those types of illnesses over the years but seem to have bits and pieces of each of them. Truthfully, my friends, one thing I have learned these many years of going to doctors with the whole spectrum of rheumatoid disease, is the fact that many times your diagnosis depends on your rheumatologist or internist. The diagnoses can also change from year to year. Thus far I have had five diagnoses in this field/specialty. Eventually, you realize you must stop getting “hung up” on names and simply deal with your symptoms. I know it is a comfort to have a name for this “enemy” that is now us within our bodies because it somehow validates our pain and loss. Whether you or I have a name for this suffering or not, that old clock just keeps on ticking and our bodies are still being dragged along with time and age.
Now that summer is baking down upon our heads, it is time to talk about responses to the sun’s rays. As I’ve shared with you over the years, one of my early symptoms was a severe and surprising reaction to the sun. Just to recap briefly, I was working my job as an RN Director of Nursing in the central valley of California, you know, that polluted once beautiful state known for its sunshine and movie stars? I owned the only car I have ever truly loved in my entire life; a new baby blue Mustang convertible. Life was good, the kids were in high school and one about to enter college. My dear husband, Jim was advancing his career as a respiratory therapist and entering nursing school while working fulltime. I loved my job, as well as my little car but did notice my thighs were getting burned when I wore a skirt, each sunny day as I drove to work with the top down. My face became extremely flushed on the cheeks and nose and my scalp also began to itch and develop sore spots. I was exhibiting the classic malar flush or butterfly rash that goes with lupus and a few other rheumatic diseases. If I knew that at all, I tuned it all out in the busyness that was my life.
I also developed acute fatigue which I simply chalked up to motherhood, a more than full time job and just keeping up with life. The spots on my scalp became very painful, coin sized lesions and took forever to clear up. Simply running a comb or brush through my short hair was very painful. The sunburns became painful, itchy rashes which defied any of the standard creams I used. I was so busy I was able to do a pretty good job of ignoring all of these annoyances until I began to have pain in my sitter, tushie or bum. Well, you get the picture or maybe not a picture, no pictures please, but you get the general idea. Sitting anywhere made me miserable and caused my legs to lose all sensation. By the time I got out of a meeting, I staggered. When I tried to get out of my car after my half-hour drive home, I was a pitiful sight. One’s entire upper body rests upon the pelvic bowl with the hips, spine and sacroiliac joints forming the frame. I gradually knew there was something terribly wrong.
Each year I try to bring up this subject of photosensitivity because there are still millions of folks limping around, out in our world with this problem. They have had a day in the sun watching a game, gardening or just tanning at the beach or by a pool and wake up that same night with chills, achiness and a general flulike feeling. It is usually followed a day or three later with a rowdy rash appearing on the skin which was exposed to the sun. It can be a symptom of lupus among other diseases in this general category. Whether it is a trigger or a symptom is yet to be determined as one of those “chicken or the egg” type of situations. For me, the overall joint pain got worse, having started in my sacroiliac joints and moved to other joints. Always, the SI joints still remained a problem. I know, I know, I’ve gotta’ say it. “What’s a nice girl like you doin’ sittin’ on a joint like that?”
The obvious question is how to see if you are one of those rheumatoid patients who has a problem with sunlight and if you do, how to avoid it in this very bright world. I think you will find out if you face the scenario I have faced for thirty plus years of my life. If you have sores on your scalp after being in the sun, a painful rash that doesn’t seem to be your typical sunburn and any of the after effects such as diarrhea, nausea, chills and fever and the worse of all, perhaps, painful joints. The symptoms can last for several days after exposure to the sun.
Perhaps this would be a good time to revisit the basics of sunlight. There are basically three types of ultraviolet light: UVA which is ultraviolet A, UVB, which is ultraviolet B, and UVC, which is ultraviolet C. The two we have to worry about are UVA and UVB. UVC is basically absorbed in the world around us and the stratosphere. UVA ages the skin and UVB can burn it. Both of these two types can alter the DNA in skin cells and in those who develop sensitivity that DNA can die. The debris from those dead cells can travel and cause trouble throughout the body for some. For others, it can lay dormant and appear later as various forms of skin cancer.
This is basically a potential problem for everyone because many of our medications may cause photo sensitivity. Be sure to read about the medications you and your family members take. Keep and read those pamphlets that come with the medicine. Everyone can potentially be made photosensitive from certain medications. The most notorious for causing photosensitivity are non-steroidal anti-inflammatories, steroids and other drugs used for arthritis such as methotrexate and the anti-malarial drugs. Some blood pressure medications as well as cardiac drugs, anti-depressants, antibiotics and anti-histamines can also cause this problem. Remember, medicine is essentially dangerous if not given in the diagnosed amounts and taken at the correct time. Medication is also dangerous unto itself and we need to be knowledgeable about what we are taking into our bodies. Here we are, sick, in pain and surrounded by legalized poison but for many of us, that’s all we have and we grab onto hope of any kind like a querulous fly being chased by bug spray.
If you are one of us who suffer these symptoms, your life changes. I know mine did. I wear a hat every time I walk out my doors. I have a large variety of hats and have learned the hard way that straw hats with holes don’t protect the scalp. One year at Disneyland when our grands were young, I left my hat at the hotel and had to buy a hat at the theme park. I bought one with the cutest Minnie Mouse ribbon on it but with holes in the straw weave. I learned two lessons from that: never be lured by the cuteness of Minnie Mouse on a pink ribbon and holes in a straw weave will burn your scalp in that same pattern. From that time until now I only wear hats that are certified UVA/UVB sun proof or labeled SPF 50+. Both kinds of dangerous tanning rays are covered that way.
My favorite hat company is still Wallaroo hats. They are very reasonably priced, stylish and comfortable. They have them for infants, children and adults. I have several types of theirs and have had two of my favorites for many years. They are adjustable with a drawstring and washable in the sink with a gentle touch. My husband has had malignant melanoma in the past as well as every other type of skin cancer, including one our dermatologist had never heard of. I have bought him two of Wallaroo’s best men’s hats. Please let me know if you have any hints, tips or tweaks on how to get a stubborn man to wear a hat when he should. I could use them. So far, he wears one to the annual airshow, car shows and that’s it.
Since this whole subject has come to “light,” oh dear, terrible pun, more and more products are being produced to protect us from the sun’s rays. There are some great lines of sun proof clothing today, and come in all types of clothing you would wear outside. I have yet to see a sun proof nightie, but you never know and I don’t get around that much in this kinky world. I wear long sleeved clothing all year long. In the winter, the sun still shines so this is not just a problem in the summer. Even hazy or cloudy sunshine can be dangerous. It is more of a problem when bright, of course. You can find many fine sun proof clothes for men and for women online, also. The summer sun proof clothes are of a more sheer and therefore cooler fabric. Many of them have vents woven into the back and the armpits. All of these products are a wonderful surcease from the sun for many rheumatoid patients and skin cancer patients, as well.
Sunscreens are available by the thousands and come in all strengths of protection against the sun’s rays. According to the July, 2017 issue of Consumer Reports magazine, only so many of those can be tested by the FDA due to their tremendous workload. CR does much of its own testing and the list is a long one. Try to grab that article while the magazine is still at the market and read it for yourself. As a general rule, it is best to go with a higher SPF number because most of the ones they tested only performed at about half the rate they touted. Try a small size jar or tube of your favorite brand and see if it works for you. The amount they cost is not a factor, apparently in their effectiveness. They tested 58 sprays, lotions and the ones you apply from a stick, and only 20 of them tested were working well at half of their number on the label. Since each of us have varied types of skin considering our ages, whether our skin is dry or oily, amount of time spent in the sun, it is difficult to pick one that works for everyone. Some of the creams they mentioned I have never seen in our area. I usually like the Neutrogena line and use a quick drying version. Some of the companies leave you looking like a white-face heifer calf so be sure it rubs in well. It is recommended, always, to put on sunscreen at least 15 minutes before you go out in the sun and replace it, waterproof and not, within a couple of hours. Is that practical, no it isn’t so it’s up to us to know how much we perspire, whether in water or not and the general conditions we’re in. I have discovered over the years I get more sores, fever blisters, nose sore spots from the sun and find taking daily L-Lysine, a natural free form amino acid helps to clear up these eruptions. I take more when they are present and even find the L-Lysine lip ointment much less expensive and more effective than others of twice their cost. Be sure to report any unusual skin conditions to your doctor if you experience some of this for the first time. I had my first problem with the sun when I was 42 years old and was not on any medication at the time. Just be aware and also be alert for skin cancers.
All of us who live with chronic pain, whatever the source, know the shadows of life can be as challenging or perhaps, more so, than the sunshine. As long as we use precautions we can protect ourselves from most of the problems caused by sunlight. The darker regions of life, the shadows, cause us to have changes to contend with in every area of our lives. Many of us have lost our professions, relationships of all types and our bodily images. Many of us are unrecognizable to ourselves from body and facial changes. We have to remember who we are at the core or ourselves, be true to that self and soldier on. I know I make that sound so simple when it truly isn’t but it is a goal to shoot for.
Many of us suffer the darkness of depression due to all of these changes plus the fact we feel rotten most of the time. It is difficult to feel sunny and bright when your body and heart are aching. Adjustments to new physicians, new medications and all of their side effects, as well as the daily ups and downs of pain, all pull at us. Often, when I am asked how I am feeling I don’t know how to answer the question. Am I expected to be positive and say, “I’m fine, thanks”? Should I be truer to myself and say, “Oh, I feel like crap today, you know, like I always do,” thus embarrassing the well-meaning individual who asked? I often get the feeling others want whatever is wrong with me to heal, go away and cease. It is a difficult concept for others to realize you and I may have many illnesses and problems which are only going to get worse with time. How do you or I explain to others our fear of the future while coping with the dark optics of today? How do each of us cope with what we face each day and find the renewal to go forward and soldier on?
There are no right or wrong answers to that question. This way of life and indeed, everyone’s pathway is as individual as a snowflake in its conformation. I have discovered it can be made better and more tolerable by the choices we make on a daily basis. You and I do make choices from the time we awaken until the time we seek a peaceful night of sleep. We choose our attitude, our activities, our physicians and our obedience to what we know will help. We learn how to fight back and not roll over and lie there like a sleeping cat or dog, with our legs in the air, if we can get the there. Be pugnacious. Be steadfast and stubborn. Love yourself enough to fight for your very life.
We do not have to live life in the shadows of life. Your life and mine might be curtailed, compromised, painful and yes, scary but it can still be a good life. Any of you who have read my blogs over these last eleven years know the drums I beat when sending out this message and that tune has not changed. We need meditation or time of solitude to think, to pray to accept or to change. We need to observe and become a part of the beauty that surrounds us in this fabulous world. We need to note the blur of the wings on a humming bird, the double blossoms on a peach toned geranium, the way the shoreline laps at ones’ feet on the beach. We have mourning doves in our neighborhood who coo all day long. Those doves, along with the ticking of two wall clocks, a small snoring Yorkie, air fresheners that spray and traffic occasionally going by outside; these are the sounds of my daily life. Listen, smell, observe, laugh, cry and feel all that is around you. Live while you are alive my friends. Shadows, sorrows and suffering serve a purpose of enrichment. You and I change each day as we hopefully grow wiser, more aware and more cognizant of the wonders of this whole experience we call life.
Weekly Dose of Sue 
Sue
That was so good to read. informative and it is your life. And if course many others
What choices we have to take which road do we travel…we have got to be so careful to make the correct ones and get it right
I think that is why this blog is so good ,it is helpful in that it says to us to look after ourselves and fight for ourselves
I hope you are feeling better..I say this most times ,but it says what I want to know
I’ve got some bladder problems ,not infection,just my usual .been lifting and bending too much I think
I’ve always got it but it’s worse this last 24 hrs…got to lose some Weight I think that would help
Chris
Chris, I am sorry you are having some bladder problems. Is your IBS acting up? Sometimes they go together. Perhaps it is too much bending. Holy Cow girl, you’ve done enough cleaning for one lifetime lately. I know you are looking forward to your new cooker..am not just really clear on whether or not that includes the oven. Ours are usually together unless built-in to the wall. Wow, a whole year already for the “new” house that is actually turning out to be new with all you have done to it.
I have trouble with the blogs sometimes while wanting them to be informative, entertaining and inspiring.
I’ve been trying all week to put our house back together after moving my desk downstairs. SO much paper work involved and my back and knees are screaming with any lifting at all. Beth and kids back from CA today and sounds like they had a great trip to central valley of CA and coast of CA> big wildfires at coast right now. It’s some of God’s most beautiful country. I lived in Santa Barbara a few years as well as going to college there. SO awful right now. Temps in CA are extremely high. Where the kids were visiting in the central valley, got up to 109 F. Small wonder they headed to the coast to cool off. Glad you liked the blog. Love you, Sue
It has an oven too,it is a free standing one..a belling make..do you have them there?
It seems the weather everywhere is altering..in OZ it’s getting hotter too.
Do you miss it back there apart from the heat and sun I mean.it sounds beautiful
I do notice my skin gets more neuropathy after being in the sun,but it must be awful with such sores for you
Hope you settle with your space and desk and Jim his. Be great to share it with your grands. Our GS used to show DH what to do ,it was good to see
Ok gotta start the day .ent appt for DH later.and he wants to go to buy a scanner for photography as with how he is he can’t get out as much and this gives him another development .he can do different things. His walking is not too good with his balance.sometimes ok and we go out..but others he safer to stay in.hes started the moving head exercise again it seems to be helping
Chris
Sue, another wonderful post containing so much helpful information. I’m afraid I’ve overdone and must call it a day for today. I’ll bet you have in transferring your desk and all its contents downstairs as well. I hope it will make life easier for you in its new location. Rest well. Job well done.
Lyn, I still owe you an answer from yesterday but did enjoy reading we all seem to have the same type of stoves…electric with the ceramic or glass tops. Your Mom and stepfather’s new home sounds so wonderful and convenient for them as well as beautiful. One floor will be better for them apparently but oh my, the job of moving. I know they will be thankful for all the help all of their family will provide. Just remind her once they are in, they can settle slowly. Getting all of their possessions packed and move is always the hard part. Well, actually, I think it’s the sorting out of what to move and what to not that is really the chore. Do be good to yourself. I know you push yourself but also know what a loving daughter you are.
Hope Sadie is doing well without her little playmate. She is one lucky pup.
We are moving everything around to make room for Jim to have a spot for a used table we bought last weekend for him to have a place to play. He ordered a new gaming computer and is anxious to get it all set up. Our computer guy has it right now. He and our local grandson who is almost 14 both love to fly simulators. Jim used to fly for real. Jim is about as good with computers as I am and that isn’t good. I know he will love this, however because he has played with GS on his gaming computer.
I know the blog was a bit dry but had to be shared. I have had a miserable week because I was careless with just a bit of gardening in the sun. Enjoy your little convertible…Love, Sue
Sue
I had never heard of being allergic to the sun until you. I must admit, I forget to reapply sunscreen and as much as I sweat, I would have to do it over and over. I do, however, wear a different hat now, a type of bicker hat, with a flap over m neck and eyes. The baseball cap just didn’t cover enough face.
I am in the sun all the time during the summer. And even though it affects some, I a, not sensitive to the sun. Only when the heat goes high, like it will tomorrow, 90′. So I will stay in the shade.
I do hope you are feeling better. Very informative. I will, however have to read it again, as my granddaughter has talked non stop.
Love ya
Tonie
Posted to lyn on the old blog..I shd have waited
Warm and muggy here
Off to hosp for DH
Hope all ok as can be
Chris
I’ll go back and check it out. Thanks, Chris!
Thanks, Sue. I’ve been photosensitive since all my troubles started over 20 years ago. First I was told I was allergic to suntan/SPF, but I broke out with a painful itchy rash with or without. Then they blamed it on Celebrex which I took for years, so I tried to avoid long exposures to sun. When I went off Celebrex and onto to Lyrica, they said it was the
I’ve been off NSAID because of my Lumbar fusion and I still got the rash last week while out in the sun.
The rash and the itching is bad enough, but I also get the sensation of something crawling on my skin?
I twitch and feel like I can’t sit still when this happens and it takes a week or two to go away? It feels more nerve related?
Just wondering if you get this as well?
I know now that it’s a symptom of my Fibro, Arthritis or something else not from drugs.
We move to Central Oregon because we thought the dry heat would be good for me, but now I have to hide from the sun! 😜
Thanks for your blog, I learn so much more than from my few minutes with Doctors!
Vicki, it is so good to hear from you after becoming so well acquainted on FB. Everything you shared makes so much sense to me since I have been there myself. As I mentioned in the blog, I wasn’t on any treatment drugs when I began to develop photosensitivity, unless you count estrogen following a hysterectomy when I was in my mid thirties. I know you have olive toned skin as I do and that makes these problems all the more confusing. Obviously those doctors you had were wrong and guessing.
In researching for this article which was not my first one since I began writing 25 years or so, it sort of lit a light in me to see and realize how many of these category of diseases have sun problems BUT many others do very well in the sun and love it for sore joints. My sister, for instance, had psoriatic arthritis and should have had sun problems but never felt better than when she was on vacations in Hawaii from the SF bay area where she lived.
We moved from the Central Valley of CA to Astoria just for this reason. It isn’t usually a problem here on the coast as long as I don’t treat the beach like the ones in CA. I rarely have to spend any time in the severe sun times of the day, between 10 am and 4 pm. I try to water my plants in the AM or on a cloudy day and ALWAYS wear a hat and long sleeves, even to get the mail. Yes, you do have hot summers where you are and do need to watch the glare of the snow in the winter, but what a lovely spot from how you’ve described it. You can make it work for you with the right hats, clothes and sunscreen but will be limited. We have a friend who lives very close to where you are. She moved there from CA about 20 years ago. She is also on my FB page.
There are well over 100 types of rheumatic diseases and they all share symptoms. Have you found a good rheumy in your area or in Portland? Let me know if you need some recommendations via PM on FB. I do get numbness sometimes from the sun and often have the shakes which I always called the chills the night or two after sun exposure. We have to help each other and share info since it is a huge subject and there is so much to be learned, even by the specialists. Do try the recommendations I made after sun exposure, especially the Lysine.
Thank you for validating my blogs. I need to hear that, especially right now. Love ya gal, Sue
So sorry I’m so late in thanking you for the reply!
I’ve found that Benadryl is the only thing that works with the itch and the
“Creepy crawlies” and helps me sleep!
Like you said I have olive skin, tan really easy, but still need to be careful due to a couple of spots on my nose I have to get burned off once in a while.
I need to look for a cute hat!
I’ve bought a couple of rash guards for when I’m by the pool or lakes. They are made from material that’s SPF 50, pricey, but worth it!
Hope you start feeling better soon, I’m struggling with this fusion. Had to cancel plans to go to Seattle and visit with my daughters:(
Praying every day for you and all that are hurting❤️
You always have the best timing Sue. I’ve always had issues with the sun having the complexion of a red head..burn freckle and peel. I don’t remember a year until nearly my 30’s that I didn’t burn to a blister at least once. Sun screen has improved greatly in the last 25 years or so. My best friend is a Neutrogena spray high spf spray that dries quickly and isn’t greasy. Second best friend is a hat with a large front brim that has a drape down the back of my neck. It’s a brand called “Sunday Afternoon”. I started wearing that brand when dad and I were very active in the British car club. I do feel horrid after being in the sun too much, family just doesn’t understand. Yard work can cost me a few days in all problems including diarrhea, nausea and headaches, not just muscle and joint pain. Missed the daughter of my heart’s bridal shower yesterday and combined with a front coming in couldn’t walk well enough to go to my water balance class this morning even with Remi. She’s finally settled down instead of clinging (helicoptering) trying to make me sit down. My California friends understand I can’t be there this time of year because of the heat and smoke. (Central California; Sierra; Kern river valley) . I spend so much more time inside avoiding the heat, air and Sun I find myself getting SADD in the summer.
Dear Laura, so many problems and all of them familiar. I am so sorry. I usually just tell folks that I am allergic to the sun but you and I, as RN’s know the skin is one of the body’s major organs and can suffer severely, even kill us as in melanoma and is very symptomatic. I have lived with it a long time as have you and please, try not to be too hurt by the ignorance we receive, even from close friends and loved ones. I am constantly amazed by all you are able to do, especially when you tackle yardwork.
I know the loss of special events can be sad and so often. My DD’s kids are so understanding thanks to her explanations because I have missed so much outdoor activity. I love to fish but can only do that in winter and it’s so cold here, that never happens. Hard benches and sun at ball games are an insufferable problem.
SOunds like Remi is coming along and I love the explanation you give of helicoptering around you. She had a very hard act to follow as we all know. I know your friends in CA must understand your situation and shouldn’t expect you in summer…oh dear, just the thought. My DD and grands just got back from a trip down there yesterday and it was 109 F. I don’t believe it’s global warming because it’s always been hot as H down there.
Your hat brand sounds like another good reference point. I never use spray on anything in the line of cosmetics because of my dry eyes with SJogren’s. Hang in there my dear. It’s a hard life and thank the Lord we are nurses or we’d both be dead by now. Love, Sue
Sue, I wouldn’t say this blog post is dry, I think it is very informative. And it validates what many of us experience, myself included. (I get the itchy rash if I’m not careful.) Sadie is thrilled to have her playmate back (owner was gone to the beach a week), and looks for him daily. Days when our schedules don’t mesh, she misses him, I’m sure. But you are right. She certainly gets her share of exercise in the warmer months when I am more able to walk her! She most definitely got it yesterday. We had a walk in the morning, and during her play session with her buddy last evening, they both saw and took after a rabbit. Her buddy didn’t get far because we were in his yard and he has an invisible fence. Sadie, however, had no impediment and took of sprinting after the rabbit. DH and I were both visiting with our neighbor while the pups played so we went out front looking for her. Nowhere in sight. We began calling her name and she came running from around the corner. Not sure how far she chased the rabbit, but she did come back to us right away. Crazy pup. I have long told DH I don’t trust her completely off leash where another animal is concerned. Guess I was proved right. 😉 Not much traffic in our development, so she was safe. We will have to work on her commands a bit more, I suppose, although frankly I didn’t really have time to react and get them out before she was off.
Lyn, wrote you a long reply last night but it has disappeared. Thank you for not thinking the blog was dry but informative. It is that time of year. I am sorry you also have rashes at times. DO be careful.
Oh that sweet Sadie…obviously has a taste for rabbit or the chase. Thankfully, she came back to you. She is so adorable.
Things to do here today. Still cool compared to your scorching heat. How awful and lightning storms, too? Is our weather channel correct about PA? We are staying in the 60’s all week with clouds and sometimes bright blue skies in the late afternoon. Ordered a new fridge from Costco for the upstairs. Have had a tiny one up there for years. Great to save steps down to and back up from the kitchen. Fixing up my old office for the Mr. for his new gaming computer. Bought a retro of an old style in turquoise blue. Should be fun and I like the space in it, for a small refrigerator. Even has a tiny freezer. Gotta keep that Ensure cold for mornings before I can walk down those stairs.
Just found new fridge on front porch. Today’s project when Jim gets back from errands. More stuff to move.
Try to stay cool and safe. Love ya much, Sue
Hi all
Been feeling worn out ,brain feels as if it won’t move
I cancelled Windows that day as it looked like heavy rain.being done Friday now,but same day as the cooker coming…but different times
So went to coast for day ..better weather there that day
In the night the fridge tripped the meter when the motor went on.
I hear it as since we moved it makes a cracking noise ..so we had to order a new fridge/freezer.we were delaying it with all being done.but didn’t think it safe with it doing that
So could have done without it
At hosp they have referred DH fir a coclear implant..he’s keen but I’m not sure.as it means stopping the warfarin and I’m not sure about all the worry of it
MY sjogrens seems dryer at the moment everywhere
Hope all ok
Chris
Chris, well, a new cooker and a new refrigerator/freezer. You are indeed going to end up with a new house. Did the storm materialize? I am sorry you’re feeling so badly. Has it been hot there and could that be a factor with the SJogren’s. I know mine has been bad and I think it’s all the fans and air conditioner we still need upstairs; it isn’t that hot outside but the bright sun bakes our old house’s upstairs. The dryness for some of us can be so disruptive. I’m still nursing a bad upper lip and nose from the sun from last week, even though I was wearing a hat.
Flowers all over the porch look terrific and now with the shade hung over half of the porch I can enjoy it more. Try to do any dead heading in the morning or at night. Well, need to get to work.
I wrote on FB about a bad encounter I had with an office member on the phone at my new internists office. Will tell you about it later…no time now but she was rude and pushy over a medication refill. I was furious. Do you have that problem over there? Much love, back later, Sue
Hi
Just a shorty can’t explain but been not too good and stuff that went wrong
Tired and have oral thrush or maybe sore mouth can’t be bothered to go to drs.just using script she gave me to have on hand
Be back when less overwhelmed with all
Yep we have uppity receptionists at drs …funily enough I can deal with them tho.but I do remember one very close one
Back soon
Chris
Hello all
Sue, your blog, and my grandboys sunburnt backs, encouraged me to pick up some sunscreen I had been forgetting. As I have told you before, I sweat a lot. So I got the sport version that doesn’t need to be reapplied so often. Put it on my face, shoulders and arms today.
I survived the invasion, but after dropping them off yesterday, I have been exhausted. Them, and the heat of now is getting to me. Slept in this morning and did things in the house that I have been avoiding. Had to turn on the AC at 10 am. Already 80′ inside. It was 90′ in here when I got home yesterday. Watered the garden and did very few things outdoors today. Cleaned up and ready self to sleep this afternoon. The other day I discovered a large bite on the underside of my breast, must have been a spider. I wear tank tops and Ahhh bras when I work outside, so figure it slipped in while I was in the weeds somewhere. Yesterday I saw the infection core was gone and big hole in its place. Keeping it full of antibiotic cream and covered with a bandaid for now. Very red, but keeping an eye on it. I had one on my shoulder a few weeks ago, I thought it was a mosquito bite, but Judy said Spider.
Chris, maybe you are stressed out causing your Sjorgrens to act up ? Does it do that way like RA and FMS does ? Glad you heard the fridge go off. Seems like when they go, it is overnight. I have to get a new washer soon. FM says when he comes back, new fridge and washer. I had to do three loads today, sheets towels and clothes. And I could hear bearings that were not happy.
Sue, hope you recover from your sun damage soon. I have been watering everything here as we have no rain of late. The grass is getting crispy. It rained around us yesterday, but supposed to get some tonight and tomorrow. I sure do hope so. It is bone dry.
I got some cucumbers, zuchinni, shallots, spinach and lettuce from the garden. I saw potatoes that need to be gotten in when I was watering today. Picked my first strawberry out of the patch I planted. And my tomato vines are full of green ones. So hopefully soon. I want to go back to the blackberry patch. Tomorrow, maybe. No one is picking but me, and with no rain they will be ruined soon. I have a lot in the freezer already, but can always have more.
I hope you all survive the heat.
Love
Tonie
Tonie, That spider bite if that’s what is sounds ugly. Do take care. I guess Judy and you know the types of spiders you all have down there. Scary things. I know you’re tired after the invasion and also know it was worth it..truly. You mean your son didn’t even come to your place at all? Really, sometimes they get so wrapped up in their own lives but…
Your garden sounds wonderful and from past years experience with you, I’m guessing the hot weather will ripen fruits and vegies quickly now. Sounds like more work coming your way with canning and freezing. You must have a large freezer compartment or should. Your berries sound so wonderful. All the wild blackberries here are just a handful of juice and seeds once they ripen..no shape. I am tempted to freeze or jam more of the wonderful strawberries I bought from that farmer. I bought strawberries shipped in from CA the other day at Safeway and they tasted like dirt. II forgot what a difference there can be.
Regarding your questions to Chris about Sjogren’s, I have found fatigue, meds and definitely environmental factors effect my Sjogren’s. Stress? Not so much.
I think we are about the only place in the country right now with cool weather but of course, that could change at any time. Do be care in that bright stuff. Love, Sue
Sue
I have a small chest freezer that all those berries are in. Yes, still recovering from the little beejuns. Nope, no visit, he was busy buying a car. Got himself a nice used Toyota Landrover. Like the Queen Mum drives.
I did some errands this morning, and then went to ride my bike a while along the river trail. So nice and peaceful and cool. But, I had the seat set up too high and went to stop, couldn’t put my foot down in time and took a tumble. Skinned my knee and have a long cut on my arm. I have no idea how that did, unless where I smacked down on it. But, I am ok. Reminds me of early days when I always had skinned knees and elbows from bike wrecks haha ! Resting for a bit. Made myself some fresh tea, cold. It is thundering and dark, hoping it rains. If not I will go on and pick berries in a little bit. The bite is looking better also. Not as red, and not hard anymore.
I picked my first strawberry off my new vines. Oh my how sweet and good. There is such a difference in the fresh off the farm ones, you are right. Make your jam and freeze it for this winter. You know it will be good then, still taste the summer sunshine.
Hope your eyes are doing better, not so dry and aching. How are the knees ? I dropped off Ms Alice’ old Walker with Mrs Blair this morning. She was very happy to have it. She has one, but it was covered up. Big and heavy and doesn’t fold up. So this one will help her. I am going back on Tuesday and help her some more. Tomorrow , maybe the lady I helped paint. Waiting on her to call. Have a good weekend, and take care
Love
Tonie
Sue, I’m not sure what Weather Channel is showing for PA, but it is probably correct. Like Tonie, it has been warm – low 90’s this week, I think. A cold front is supposed to move in and make the weekend more pleasant. Yesterday and today, in particular, were not pleasant to be outside. You can’t tell Rufus that, however. Crazy cat still begs to go out. It rained off and on today, right now the sun is shining. but more showers/storms are expected later. Your new fridge sounds cute. 🙂 Glad you are finding some times of day to get outside a bit without the nasty sun.
Chris, my goodness, now a new fridge, too. You certainly will have a proper new house now. I can understand your concern for your DH having to stop the meds for the implant. Hopefully, it can be done without too much issue since he seems to be looking forward to it.
Tonie, that bite sounds nasty. Glad you are keeping an eye on it. SB was camping at the beach since Monday and came back with his share of horsefly bites. They actually returned a day early because it was so miserable there. Hot, muggy, and buggy. He has his share of sunburn, too. Never fails when he goes to the beach, even when slathered up. It’s all in the timely reapplying. He kept falling asleep on the beach and kind of missed that timeliness. 😦
Hi Lyn, I hope your weekend does cool down for you. Sounds very muggy. Rufus is obviously a man of the world, at least the feline world. All the pics of the storms back there have been very impressive with the rain coming down in sheets. So much heat everywhere I almost feel guilty our weather has been so beautiful. We were just pushing 70 degrees today with a mild wind and such gorgeous blue skies.
Jim and I went downtown to find a graduation gift for our grandson who also just got engaged. It was sort of a “twofer” gift. He and his fiance are living in DC and loving it. He is used to it since he just graduated from American Univ. I told Jim, as we were walking along holding hands, (him with his artificial knees, me with so much pain in back and knees,) that we looked like an old couple trying to hold each other up. I recently have been searching interesting canes online. I have a nice Hurrycane but think I’ll be more inspired to use a prettier one. Then I read the latest Guideposts mag. and there was a story of a younger woman who basically didn’t want to use a cane until a friend gave her a beautiful floral one. There is an amazing selection of them. Better think about dinner here…won’t be exciting. Stay safe and hope SB doesn’t hurt from that sunburn. Sorry his weather at the beach was a bit much. Hope DD is doing well and her BF. Love ya, hang tight in all these weather variations. Love ya, Sue
Sue I’ve accumulated a small collection of pretty canes. I tend to use the one most coordinated with my clothes. I do have basic black for when I sing at funerals. You can get them fairly inexpensively on Amazon. I’ve found the “bypass” handle style the easiest on my wrists as I walk. I do use them despite having Remi.
Laura, thanks for the tips. Actually I have been looking at the canes on Amazon and they led me to a type I like called Royal Canes. They are so pretty and reasonably priced. I will check out bypass handles and see if they would work for me. Hope Remi is learning more each day and you both are not suffering too much in the heat and storms back there. Love, Sue
Hello all
Been a busy couple of days. I had just started working in the garden yesterday afternoon when the lady I help paint called me to come work. So off I went there for a couple of hours. I had to get things ready for a birthday party at church for one of the ladies who turns 90 tomorrow. Up early to cook. We had the Gideon’s there today as well as the dinner for her. Then, a surp use visit from my daughter. She, her boyfriend, Nathan and one of the younger boys went to Ohio to pick bf daughter. Nathan is going to stay with me for a couple of weeks. I am happy. He is my sweet boy. And he will help me. No fuss when he is here. He is self sufficient except I cook for him.
So……some happy days ahead.
Hope you are all having a good weekend.
Love
Tonie
Tonie, this is good. I know how close you feel to Nathan and he will enjoy having that time alone with you , also. He’ll be such help with the garden, animals, etc. as well as helping at Judy’s. How’s she doing and Mary? Has she started on the oral chemo yet? Poor soul. So many problems.
Is all well with Nikki? Hope that cut on your arm is healing without any problems, you Rough Rider you. So pleased you are getting some work and I know the women you are helping are gaining from the experience as well. I’m sure Ms. Alice would be pleased to have someone get some use out of her old walker. Hope her daughter is doing well and settling back into home after their long vacation.
Still picking berries, I know. You are going to enjoy them all winter if they keep producing. Just stick to the ones close to the path or road, okay? No hiking through berry patches. If they’re like ours, that can be a very painful experience and at the rate those vines grow, if like ours up here, you could fall and be covered in vines by the next day…well, almost. How many of your own strawberry plants do you have?
I’ve been quiet for a couple of days. Such a busy couple of weeks moving things around and all the little bits of lifting that add up to so much which equals pain and misery. Almost finished but one bedroom to change around now. We’re selling two twin beds with headboards that we’ve had for the grands but since they live so close and are older now they rarely stay overnight. We need the room and will just get something else for them and when our son comes for one of his visits from TX. Been looking at rollaway beds and even inflatable ones. My parents used to have the most comfortable little rollaway bed that really beat the hide-a-bed for comfort. Don’t think they make those, the beds hidden in couches that much anymore. The big thing now is the wall bed and they run into the thousands. Crazy! Society has come full circle. In the old days they were Murphy beds that came down out of a wall, remember?
I hope your weather is less hot but doubt it with all those storms. We have been continually mild with temps in the 60’s, winds light and an occasional rain shower. Since I’ve had so much trouble with the sun this year, having to work out in the flowers in the evening. I could get up early and hit them at dawn but that isn’t going to happen. Today GS coming over for part of the day. GD out of town with friends. Pretty quiet here on the western front. Love you much, Sue
Sue
Sounds like you have had a productive changing of the guard, so to speak. It is fun I think to redo your home in small ways like that. Judy is fine, doing better. Mary has taken to the chemo well right now. They are giving her shots through the port. First antibiotics and then the chemo. She goes today for checkup with the Dr to see how she is holding up. Judy has appointments for exercise and shots in her back, etc. Busy, as always.
Yes, picking berries still. No rain where they are, so drying up on the vine. Sad. We had a good rain yesterday, thank God. But 4 miles away, no rain. Strange.
I have seen several hide-a-beds online that look really interesting. One folds up into a hassock. And is made of memory foam. They do still make the sleeper sofas, I see them in the store all the time. Fran has one of the blowup beds, has a stand and everything. But a lot of trouble to unfold and refold to put away. I like the idea of the hassock ones.
Well, you saw my request for prayer for pain last night. It was for my ribs. I rode Sweetie and she bucked and threw me. I landed on my tummy with all the weight forward on my sternum and upper ribs. Knocked the breath out of me badly, scared Nathan. And me. Wasn’t expecting it, all was fine, then she went nuts ! Like a bronco.I can stay on with the bucking but she was twirling in circles. I am sad, I have really bonded with her. I have an ad to sell her. I can’t do that. Or if she doesn’t sell, FM will deal with it when he comes home. He called me to make sure I was okay. To “hear the sound of my voice and make sure”. Prayer works, God is good. I am sore, but nothing else today. Going to work shortly.
Another adventure in my life. So thankful I didn’t get hurt badly. Now pray I can find a good buyer for her and later buy me a horse who is more docile. Whatever is the best in His plan for me.
Love ya
Tonie
Vicki, I’m not sure what a rash guard is but you should be sure, if it’s a hat, that it covers the top of your head and ears. Cute sunproof hats are easily found online and more and more garden stores are selling them I’ve noticed. I am so sorry the post-op back surgery is still so miserable for you. What do the doctors say? Time? Probably have to take it easy this summer until all heals. I know, it seems like forever. Thinking of you over there east of us. Stay cool. Love, Sue
Dad surprised me yesterday. We were on our way to meet my sister and BIL for lunch and he came out with “your sister just doesn’t get it about you does she” . I was so surprised. We’d eaten together on Saturday as well then went on the boat. She’d asked if I could drive dad to the next town for his plastic surgery for his lower eye lids (in preparation for cataract surgery) and she’d meet us there. I reminded her that I have no clue if I can walk let alone drive any given day. There isn’t a chance I can predict how i’ll be in 2 weeks. I guess dad has been paying attention and perhaps done some reading about the autoimmune diseases I’ve admitted having to him. (I’d faked it for several years pretty well but can’t hide the effects anymore). I feel better that dad knows. Most of my true friends do. I stayed in my cousin’s restaurant with Remi yesterday while dad et all went out on the pontoon to fish. I’d gotten too much sun and both Remi and I overheated on Saturday.
Laura, I know it must be a sense of relief to know at least your Dad understands your problems; as much as someone outside of you can. There is no pain quite like the pain of our own families not understanding what we are going through. I guess the word alone and loneliness don’t quite do it.
I know how I used to feel many years ago when I had to stay off of our ski boat due to the sun and the roughness of the ride. Missing out on all the fun hurts. One year, when we still lived in CA Jim invited our internist and his family to go skiing and I recall our doctor saying to me, “Aren’t you coming with us?” We’re kinda out there on our own at times and we never quite get used to it. Much love, Sue P.S. Hope you got some fresh fish out of the deal.
Tonie, So sorry Sweetie didn’t work out. I know you had bonded with her. You are in my thoughts and prayers. Love, Janet
Thanks Janet. I know you understand
Hi all
Tonie hope you are better by now
Do be careful in all thats two falls now
Just a shorty.
I’m feeling a bit stronger.my mouth is sore still and throat.i cant seem to get better
Eyes sore and aching
Just sjogrens marching away at moment
Glazing and new cooker went wrong other cooker next week now
Usual mess up
Chris
Chris, this dreadful stuff has really got a grip on you, I understand maybe more than some. Awful stuff. Remember to hydrate your body like crazy with the increased heat. For me it’s the wind that dries me out or I just forget to drink. Hope you have allergy drops, artificial tears and steroid drops for your eyes. Some days it takes all three. OMG, more stress for you with the house! I hate to hear that. You know you’re in my thoughts and cares, Sue
Aw Chris
So sorry you are having such a time with your Sjogrens and the work. We are alike in things going wrong. So sorry. But it will work out in the end. Maybe a better, longer lasting cooker.
I am very very sore across my ribs, but doing okay. My grandson and I worked very hard yesterday, so that is attributing to it as well. But second day after….always worse. I took it easy today. Slept very late, and just worked in the house with the ac on. Made some blackberry jam and caught up on my sewing repairs.
Do take care . My grandson is worried who will do the voice for Wallace and Gromet now the man has died. He so loves that cartoon. Drove me nuts with it when he was smaller. Still watches the one I bought him years ago.
Keep us updated and, like Sue says, drink drink drink. Oh and have your pleasure too !!
Love
Tonie
My GS used to love Wallace too i used to get him to watch it with crackers and cheese.
Do hope all is better for you today
It must be all sore
I had a darn pleasure today toooo much of it
I had a small tub of icecream all to myself I wouldn’t share it either!
Chris
Chris
Good for you !
Chris, I just caught up on here after being away a bit and had to chuckle at you and your tub of ice cream I just had ice cream for dinner! A good bit of it, too. Why? Because I could. I am sorry to hear you are having a time of it. Sure hope you can get the Sjogrens under better control soon.
Tonie, so glad you are ok and so sorry about Sweetie. Please take care. I’m glad you have Nathan there with you.
Sue, I have a rather sweet picture of you and Jim making your way, holding hands. Why not try out a new cane or two, pretty and colorful. Life is too short not to amuse and please yourself.
Hi, Janet, hi, Vicki!
Bobsled, glad your dad now knows a bit and is noticing how others don’t get it. Now if only the others would get it. Maybe someday.
Been a busy time and a stressful time here, lots going on and major rehearsals (2 Saturdays) and a concert in the bag – Brahms Requiem, for you music lovers. I am in recovery mode this week. Did something to my left hip area that radiated down my leg. Still not sure what, been hurting 2 days, but finally tapering off, I think. Always something, it seems. Enjoying the bounty of fresh fruits and veggies. Tomorrow DH and I are treating ourselves to a long overdue “date night”, dinner at our favorite local fine Italian restaurant. Can’t wait!
Good morning all
Lyn, you have had a busy time. I love the Requiem, wonderful music. I love classical, not many people in my life share that, even FM. One thing we differ on. I hope your hip heals soon. Ice cream for supper is one of my favs. I load it up with fruit I have on hand, and maybe some dark chocolate topping. Yum !
BSL, glad your Dad gets you. My FM is the only one who has ever researched and read up on what is going on with me. I guess it comes down to the “caring” doesn’t it ?
Sue, I forgot to mention your canes. Of Course you should sport a nice pretty one. One that says ” wow ” instead of “oooh” ! And you and Jim walking hand in hand is , as Lyn says, a sweet picture in my head.
Yesterday was busy again. Cleaned Frans house, Nathan did all the vacuuming and she paid him. She is so sweet. We went and bought him a wallet to put his newfound wealth in. Talked to his girlfriends mother and setting up time together next week. So sweet. But it breaks my heart when he talks of getting married and having a family. But in his child mind, he can do everything. Would that we kept that, right ? Then we rode bikes for a while. We were both whupped ! He is working out now, which I have been encouraging. My sweet angel, always happy.
Today is my FM’ s last day at work. He wrote me this am that it “pinched his heart, but he must do it without tears” I told him how some of us on FB were talking about our favorite teachers recently. There are some that leave a lasting impression on our lives. I am sure you all can think of a few in your lives.
Going swimming this morning. Then a friend from there is coming by to spend some time with us. Maybe pick blackberries.
So I wish you all a good day, full of pain free activities you choose.
Love to all
Tonie
I know your FM’s feeling. Been there, sort of. My last day I wasn’t 100% sure I wouldn’t be back, but I suspected it to be so. How soon until he can be here in the States?
Dear Nathan. Glad he is enjoying his time.
My day wasn’t completely pain free, but I did what I chose. 😉 I hope yours was a great one! Now, back to reading. 🙂