How Dry I Am

Do you remember the old camp song, “How dry I am, how dry I am, nobody knows, how dry I am”? I know it sounds pretty goofy but we were kids. I also remember seeing it in old TV shows and very old Western movies as some poor old, down on his luck drunk is sitting behind bars singing his woes.

I was inspired for this blog today because I have secretly been singing that song to myself because I have been very dry lately. Sjogren’s is just one of the four diseases that seem to enjoy living, uninvited in my poor old body. This particular horror is called Sjogren’s Syndrome. It is my hope that many of you who suffer from SS will find something new in this piece. I have had it on my mind lately because I was put on a new pain medication two months ago and it has dried me out even more than usual. How dry I am.

Sjogren’s Syndrome was re-discovered by a Swedish ophthalmologist in 1933 when he made the connection between dry eyes and dry mouth, both symptoms of SS and connected them to the presence of rheumatoid arthritis. It is not to be confused with Mikulicz syndrome which involves swelling of many of the glands of the face and neck. Dr. Sjogren’s made the distinction between the two. It should also be differentiated from Sicca complex which has the eye and throat dryness but no other symptoms throughout the body and no connection to rheumatoid disease.

Dry eyes are the result of the lacrimal glands which make tears, and dry mouth which results from diseased salivary glands. Called aqueous tear deficiency in the eyes because of the decreased production of tears. It just occurred to me I sound a bit like a commercial for a dry eye condition that is always on TV. Dry mouth which is just as annoying and dangerous is due to a deficiency of production of mucus from the parotid, sublingual and submandibular glands. Sjogren’s syndrome can also cause damage and destruction to any part of the body that secretes moisture, such as the vagina in women, the throat and esophagus. I have also come to wonder about its effect on the digestive system as it is full of mucosa that reacts to dehydration and causes severe constipation. There is still much to be learned about the whole body and Sjogren’s. We also know it can affect the skin directly.

Let me tell you about the two types of Sjogren’s Syndrome and then I promise you this blog will stop being so “dry,” please pardon the pun. In a very generalized way, primary Sjogren’s is a dryness problem basically and most commonly of the eyes, mouth and sometimes the throat and swallowing mechanisms. Secondary Sjogren’s syndrome involves the same symptoms with a few more tacked on like rheumatoid arthritis or another form of rheumatoid disease. For me it is arthritis and a rare form of cartilage disease called relapsing polychondritis. Keep in mind the whole body needs moisture. It is now believed Sjogren’s can affect any organ in the part that has secretions.
I have had Sjogren’s Syndrome for many years and contracted it at the same time I developed other rheumatoid problems. What is it like to live with secondary Sjogren’s? It is constantly knowing your eyes will need drops throughout the day and knowing which drops you like that are available over the counter and the drops ordered for you by your ophthalmologist. More women in middle age are affected by this than men or younger folks, but it can strike at any age; therefore, you find many of us females who have it with drops in our pockets or purses constantly. Most of us with the disease have learned the importance of avoiding ceiling fans when possible, strong winds and direct heat from a small portable heater or fireplace. This means that trip to the Sahara Desert is out.

When one’s eyes are dry and the tears are missing, the eye behaves much like a magnet, attracting lint, eyelashes and any other minute particles floating around out there. Sand, salt air, and extreme temps as on hot days as well as freezing weather have to be considered. Personally, in the course of one day I use drops whenever I remember, ideally every couple of hours. During a flare of redness and burning I will use moisture drops every half hour. These drops are usually over the counter moisture drops. I prefer the ones for allergies to take care of the usual redness and irritation. I also use an allergy drop ordered by the eye doctor. During an extreme flair I have cortisone drops but those have to be used sparingly due to their possible effect on optic pressure. You and I definitely don’t want to go there. However, there are times when a flair can keep me awake with intense pain and the steroid drops are the only way to get relief. I usually have those bad nights after a long trip in the car with the air conditioner or heater blowing cool or hot air around. When extreme, stubbornly painful bouts occur, I have eye masks for nights to keep out everything and some of the good ones also come with a comforting little plastic pouch that fits over both eyes and can be chilled in the refrigerator. Nights are a good time to use the oil based drops which are thicker and stay on the eyes better but do make it difficult to see clearly. I rarely use these because of the mess they leave behind and the sticky residue which attracts more tiny fibers or hairs. I am also awake during the night for various reasons and don’t feel safe if I can’t see clearly. The eye doctor can place tiny silicone plugs into the tear ducts but in my experience this is a temporary fix as the plugs fall out.

Sjogren’s syndrome involving the mouth can lead to swallowing problems, instances of choking and can cause a hoarse voice due to the excessive dryness. Without the correct amount of hydration all day long, a sore throat can develop and it is not uncommon to awaken to a sore throat. Yes, I drink all day and at night whenever I am awake. I constantly keep bottles of seltzer water wherever I am. We buy the non-caloric, unsweetened natural spring brands at Costco box stores. I should drink water but I’ve never been a water drinker, even as a child. I also drink a lot of juice for other problems this causes in the bowel but have to beware of all the natural sugars which can cause cavities. This brings me to one of the biggest problems associated with Sjogren’s and that is oral care.

Regular and vigorous brushing is a must for all Sjogren’s patients and many of us have had some serious dental issues. Dry mouth is dearly loved by bacteria, giving them a friendly environment. Regular dental visits of at least twice a year are encouraged as well as flossing, Waterpiks or automatic brushes. There are also fluoride toothpastes that can be left on all night. There is some controversy about fluoride now so they are in question. You know, it’s interesting how so many things vacillate between good for us and bad depending on the current trends. It is recommended one chew on sugar free gum or suck on sugar free candies to keep the mouth moist. There are a few special brands on the market. I have yet to find a mouthwash or gum I like. There are saliva substitutes but frankly, they are pretty disgusting. There are many fine lip balms on the market and I use one nightly.

Sjogren’s syndrome can also cause immense fatigue for the poor patient who suffers from it as well as joint and muscle pain. Vaginal dryness in women is a common problem as well as skin rashes, dry coughs and numbness and tingling of the arms and legs. This despicable disease can also cause problems in the lungs.

It is a vast subject which is impossible to cover in a short blog. The important thing is to get diagnosed properly if you feel you suffer from it by an internist, ophthalmologist, or rheumatologist. There are tests that can be performed on the eyes or other saliva tests for the mouth. Lab work may reveal it or may not. It, unfortunately, can take many years to diagnose which is a matter of frustration for patients and doctors. The cause is still unknown but it is believed to be caused by the genes or by a viral or bacterial infection one is exposed to.

Those of us who have been diagnosed need to tell any of our other physicians, especially if they are treating any of these symptoms. Any time I have had surgery I have talked to the anesthesiologists about it so they can moisten and tape the eyes as well as be aware of the throat structures for dryness. When in the hospital your doctor can talk to the pharmacist about the kind of moisture that is available for the mouth such as artificial saliva. This is especially important if you cannot drink and hydrate your body while in the hospital. Many medications can cause dryness to be intensified and always need to be considered. Some of these are meds for diarrhea, nausea as well as pain meds. Sometimes we can be warned ahead of time by reading the label, other times we just have to try the med and stop it if the dryness is too severe to handle.

I do hope this brief look at a very complex disease has been helpful to many of you, my readers who suffer from this or other forms of rheumatoid disease. There is a great deal of information available online and new products coming out frequently. Talk to your doctors about these. Hang in there my friends, just take this complex problem one day at a time. I do it and so can you.

65 thoughts on “How Dry I Am

  1. Yea…..that’s it to a T
    Well dun Sue….
    As I said in other post I sat by a log fire was so wasn’t smoking it was great..but..,my eyes are so dry and my breathing tight and sore tonight
    It touches every part of your life you wonder what’s going to be touched next
    And yep you avoid taking meds incase it makes it all worse
    The neuropathy is bad the moment my skin on my head my hair has been combed wrong but all over
    Amytripaline helps this pain but drys you up again
    As you’ve said before choices….
    Good one eye

    • Chris, I knew you would relate to this. I suspect there are many, many rheumatoid patients who also have Sjogren’s but never put a name to it. I am sorry to hear about your eyes today and the neuropathy with the scalp. I know thre is so much, everyday you have to deal with. Please sweet friend take comfort in knowing you are not alone. Feel free to add to the article with remarks if I missed anything. Much love…Sue

  2. Good one, Sue, very helpful and informative. My eyes tend to be dry often, so I have done a little research on it. So far not enough to get too excited, but I do use drops daily throughout the day. It may just be that I’ve arrived at “that age”, but I’ll be on the lookout for additional symptoms. Sorry yours has been active lately. It has been so windy here the last couple of days, I find myself wearing my glasses more than my contacts. I’m sure contacts would simply not be an option for you. Someday they will no longer be for me either, and that’s ok.
    Chris, I know you know first hand about SS. So sorry you do.

    • Dear Lyn, sounds like you have enough dryness to make a note and tuck this info away just in case. Hope life is doable for you. Enjoy your pics of your daily walks with Sadie. Love ya, Sue

  3. The thing about it as well is smells you kind if have to walk past quick….or even newspaper print…books.
    Would you believe they have to,pass the sniff test before I can have them!…..old books from a library are best .
    Most magazines are bad
    It affects the eyes and airways burn
    Getting up at night to the bathroom if I have to go quickly without using eye drops I have to keep my eyes closed
    On steam inhalation at moment to help sinuses being dry
    My nose gets sore inside
    Oh dear….what a sh.t!
    Anyway it’s cold here today got heating on but can’t warm up at all ,it’s dull too
    Hope all doing ok

    • Chris dear, sounds like you’re having a frustrating day. I’m sorry. We went out with the family last night for Mexican food and I thought I’d have a safe pic with a shrimp enchilada and boy was I wrong. Was up all night with cramps in the bathroom. I know what you mean about SS and odors that offend the mucosa in the nose and throat. That is the reason I had to give up swimming. Our community indoor pool has far too much chlorine and the fumes are so painful. I can’t even go into the building and watch the grands swim. Sometimes I think I am part bloodhound. Hang in there sweet lady. Sometimes, if I know I’m going to be in a smoking room or something similar I will put a dab of Vaseline in the nose. Love ya, Sue


  4. It’s strange that tiredness that over comes you. It lasts for a few days and you’ve no choice but to give in..I know we all get that….the sore throat..well sometimes it’s like you have a cold starting that doesn’t arrive just the continuing sore throat. Yep I have the humidifier on….but these things seem to develop anyway…but I now also inhale steam twice a day…..awaiting a result!
    It’s the sore breathing in the chest that won’t go …
    Well today has started some stones for a rockery being delivered today.cleared up their old fountain which was rotten.,water smelling thick black stuff.and four frogs living in it..don’t know where they jumped off to….scared now will put the stones there and a few plants..also where the bamboo was…that hopefully has gone now.have to put a pot there as nothing will grow there its poisoned to death!
    Have sausages and mashed sweet potato for lunch..did the pot last night. I find it easier to bake them then mash them. It’s quick in the combination oven
    Lost my weight from two weeks of indulging….so bilimmn hard to keep it down
    Gonna get started

    • Chris dear, Please be careful lifting rocks. My dear Dad fractured several vertebrae years ago lifting paving stones. Your rockery sounds fabulous. I am thrilled with all you are doing at your new house. Pond sounds so nice. What is in it?
      Be sure you are hydrating enough, especially when you awaken during the night. Sorry about the breathing. I know that can be scary as well as so tiresome. As far as the sweet potatoes, I prefer then baked, also, until they are very soft and glazed in butter from the oven. Good for you keeping your weight down.
      Feeling awful on this end today. Having trouble breathing as well as all the dryness from the new pain patch. Looks like I’ll have to stop them. Waiting call back from pain doc now. Love ya, Sue

  5. Morning all
    Wonderful informative blog Sue. I know you and Chris suffer so much from this. I have a very very dry throats always, so I am always drinking water. Sometimes at night I wake up and my throats is stuck together, you know ? My eyes are dry, but not usually enough to use drops, but I keep them on the nightstand because I do gets achy eyes sometimes. So many things that stem from RA, and FMS, and you hope you are not picking another one up. I suffer from fatigue so much. If I give in to what I really want to do, I would sleep late and sit restingmost of the day !
    Have you guys ever tried those personal steamer things ? Where you breathe the steam ? Little machine. I wonder if they would help ? I run a humidifier in the wintertime because it is so dry. But I live where humidity is King in the other months so ….
    FM called me this morning. He says everyday in France that teachers are getting attacked and beaten by their Muslim students. Please pray for their, and his safety. Time is ticking down, and in another month he will have a birthday and retire. He is scheduling all his appointments to get his finances arranged. It seems long, but will pass quicker than I think , or my heart thinks, it will.
    It frosted here last night and was 25′ when I woke up…..ugh ! But, the sooner it gets here the sooner it is over right ? Here’s hoping you all have a wonderful day
    Ps, I see we have new readers, welcome all and please join in the conversations, we would love to hear from you

    • Tonie, I agree. I wish all those who read would also comment. It would be fun getting to others with which we have so much to share. That’s terrible news about your FM. Prayers of course for him and his fellow teachers. How awful for France. Hope as you do that the retirement goes smoothly and he can get out of there and come back here.
      Cold and freeze already? Well, looks like winter is here. We’re having rain like mad here. Please say a prayer I can get my meds straightened out. Not looking good at this point. Frustration aplenty. Love you, Sue

      • Tonie, don’t know about a small machine unless you mean the little ones you can plug directly into an outlet beside the bed. The humidifier I have also steams. Sue

  6. Tonie
    I’ve often thought of those machines..I’ll have to look into it now I’m steaming..
    That’s awful in France ..lets hope he gets over with you sometime quick
    Didn’t have that food ,day went different so have it tomorrow with roast pots
    Cold nite here
    Half term so everywhere is busy town …parks…walks…laying low till it passes..

  7. To All, our dear Jennie, who is still in France will be making her big move back to England with DH in November, asked me to relate her love and well wishes to each of you. She said she thinks of all of us each day and will be back with us after her move. It is a nightmare of paper work for them this move to another country and she is tired and dealing with many of the health issues each of us deal with. We love and miss you Jen, Sue

  8. Sue
    No, here is a little portable personal steam inhaler. My PurMist , is the one advertised, but I see Amazon has several. Capillary Force Vaporizer, is its technical name, Btu, it looks like it could help. It has like a little face mask built into it and you hold it over your nose and breath the steam. I will be and have been praying for your mess to get straight.
    Did I tell you my RA Dr said that RA doesn’t affect your back ? I forgot…..yeah, I to.d her the pain clinic was concerned that maybe the RAhad moved into my back, she kinda snorted and said that RA never affected the back. Ah well….I really have to Dr shop again….
    Okay, rest time for me now, getting late. Love to you all
    And you too Jennie, prayers for a safe and painless move

    • Hm, I wonder if she thinks ankylosing spondylitis is a thing… I have lots of arthritis in my back, but it is OA. Not fun.
      Yes, the personal steamers can be helpful. I have had one for many, many years. The kids got a kick out of using it when they were little and got sick. Also used it for SB a few times when he was croupy. Just watch that the steam isn’t too hot to burn your nasal passages. Mine has a lever that I can control how much steam it emits at a time.

    • She might be the Doctor, but I think she is so wrong. My Rheumatologist says it does affect the back and anywhere else there is joints. I was concerned about my knees hurting so badly again since they have both been replaced and he said it was the RA. The OA is why I had them replaced but the RA also affects all other joints including the back. I don’t know about some of these doctors.
      Feel better. Love you, Donna

      • I’m with you Donna. My sister had terrible destruction in her knees from psoriatic arthritis, worse than RA. She fell several years later and the knee was eaten away by one of the arthritis and no one cared which..maybe OA at her age. Knee had to be removed and got osteomyelitis and never was able to go back in again. She died a couple of years later with no knee, straight leg and lifestyle terrible. She endured so much in her life. She was once a tall, beautiful brunette fashion model. Life can be so cruel but she was always kind and as pleasant as possible. Sometimes at night when she would come to visit I would hear her crying in her room. Now I understand all I could not then. Life teaches us so much, huh?
        Pray you are better. Love, Sue

    • Tonie, definitely time to doctor shop. Semantics are always getting in the way. I’m so sick of it. This young woman doctor has an ego problem and is trying to cover up her lack of knowledge. Thanks for the info on the steamer.I don’t usually steam but will keep it in mind. I just need a moist atmosphere. The heaters dry the rooms, whole house and individual.
      Last night I took off the pain patch on the orders of the pain doc. in Portland. We will see how it goes. I have the old headache pills if I get too uncomfortable. Okay thus far. Slept better last night. No trouble breathing which was a relief. Stayed on it as long as I safely could. Can’t get in to see the doc for three weeks in Portland. Cancer shots tomorrow. Jim and I must remember to get to Walgreen’s and get our flu shots. Grocery shopping today. Much wind and rain today. Huge puddle everywhere. Went to dinner tonight. Don’t know what the next three weeks will be like. Had clam chowder, crab cocktail and strawberry lemonade. Was so good. Hope all is better with Red. Love you , Sue

      • Sue
        I know, I go to see her again on the 7th. That will be my last one. I have 3 months to find another one. I am putting out feelers to my nurse friends to see if there are any around the area. Pray that I can find a good one this time.
        I pray daily for your pain relief and comfort. I know their is an answer somewhere, but the journey there is hard.
        Glad you went to eat. Sounds like a good meal ! Me, I had to repair my toilet. Had to replace the mechanism in the tank that flushes. Took longer than it should, but done now. Can’t be without the flusher !

  9. Hi
    What is it with these Drs who are so precious about themselves….hope you are feeling better Tonie
    Yes Lyn you certainly have to watch the heat with the steam from the kettle..I sort of start up,as high as poss and work down as it cools
    Trees are changing a lovely colour now..sunny days as well
    Oh tonie how is your DD now..
    Did you see dr about the pain patches
    Suzanne how you? How’s your aunty and all ?

  10. Well today was a finding out that others are not so ‘just right’ as they look
    Our new lovely neighbours told me she has an auto immune thing that attacked her kidneys a few years ago out of the blue..she Was ill and put into a coma.she is oKISH now but has ill times..has to take medicine for the auto immune thing that bought on skin cancer has had several off her face and her hubby has heart problems.he is worried he’ll be ill when she i said to please call us if any help needed…it’s so good to have neighbours that you can both call on in hard times
    And next there were charities selling Xmas cards in a church in I went in and met a lady looking for some..of course I start up chatting as we were looking ,as I do..and she was saying her hubby has Parkinson’s and prostate cancer.and she is recovering from breast cancer and she is his carer….how down she gets but she has to be ‘up’ for him she feels …,today was a discovery of ….hell ,live for now…
    So here I am…it seems strange but when I came from out of that church even tho i was sad for that lady I had a determined spring in me to enjoy the afternoon ..instead of thinking here we go again for Christmas
    I think it destabled me ..must be a side effect of chatting to people !!
    Anyway how is the pain sue ,is it to early to say yet?
    Getting colder here

      • Tonie, you had such a wise mother. I know she laid a foundation for you to live by. Sorry you has to fix the
        toilet. I’ve done that particular job myself. Definitely… necessary. How is life around your happy farm today. Warm or cold? Definitely cold and wet here today. Hope Red is better now and know he is, of course, lonely. Bet you’re already thinking about another rescue horse.
        As you can read about my day From CHris’s post I won’t repeat myself. Feeling pretty wonky tonight. Love you much, Sue

    • Dear Chris, What a fine experience you had. I do know how you feel. Many times when I’m around other patients, like cancer patients, it instills in me a fervor for wanting to do more with my days as well as the realization I have a much deeper empathy for others. I always thought I was an empathetic person and did good deeds for others but that has changed to a degree and become more intense. I am sorry for you neighbors and once again, someone who is experiencing life imperfect. God be with them. They are so fortunate to have you as a neighbor.
      How is your rock garden coming along. Are you putting succulents in pots in there? Sounds so scenic. I love how you love your new home.
      I am nauseous today and the pain is now returning. All I have is the headache meds for the next three weeks. Rough day today with the two cancer shots in the hips and methotrexate day. Was going to get my flu shot but was afraid it would be too much for this little body of mine. When I was in the local cancer center getting the hip shots, the RN heard my sorry tale of the Butrans patches and she told me one of their RN’s died three years ago because she fell asleep on a heating pad where her patch was on her skin and died. Scary and sad. Thank goodness I did read that on the long sheet of warnings or I could have done that. I’m always on the heat when in bed.
      Hope for better tomorrow as far as the side effects of the drug but probably a bit more pain. Awe life, huh? Much love sweet friend. Sue

  11. Well my garden
    ..the rockery I have put a large urn I have at the top with a tall kiwi plant in it..a grassy thing with broad leaves
    Haven’t decided what else yet till I see it
    But today I found to put in a tall pot a prostrate Rosemary it’s called…..ive never seen one before it just trails down not so stalky as the real one..but smells the same..I wonder if you call it that with you
    We have what’s called house leeks small succulent plant like a rosette.goes from green to a large pot full of little ones
    Perhaps when you come used to coming off those patches it’ll be better.than now .do,you think it’s the withdrawel symptoms?
    Heat looks bad with those patches then ,,does it make them stronger than they should be?
    I wonder if it made then stronger the side effects were stronger than they should have been for you??
    Hope you ok today

    • Chris, your rockery sounds lovely. Can’t say I am familiar with any of the plants you mentioned but they probably have other names here. I have a rosemary by my Kitchen window. I love fresh herbs. Sounds like you have a pleasant variety of height and color in your new display.
      As far as the patches, I didn’t have the side effect until I went to a higher dose. The problem with the lower dose was that it didn’t take me through the week. For instance, I put a new one on on Saturday and it would only last until Thursday or Friday. The gut trouble is better. I have avoided meat for two days and want to see if it helps. Still have some of the drying out problems but better. No, I don’t have any withdrawal except a smidge of nausea. Hope you’re doing well and didn’t lift any rocks. Love you, Sue

      • Sue
        Could you take the lower dose..if not many side’s better than nothing and lesser pain
        Well yep lifted the larger pebbles. It was fine not heavy and I threw them..or let them drop
        Vacuumed today and the bathrooms…dust tomorrow
        Sunny here and quite a nice day
        Going out later to get some slippers…the others wore out and with this reynards need them as well as thick socks .the kitchen has a tiled going to get a carpet for it for winter..but can’t find one to suit

  12. Hey all
    Chris, I agree with Sue. They are blessed to have you as a neighbor. We were taught all our lives, to have feelings for others, to help when you can. I believe once that spirit is engrained in you, you can’t help it. It’s a wonderful feeling AND it takes your mind off your own troubles,
    Sue, so sorry you are going through all this pain again. Still praying for some relief for you.
    I had my MRI this morning. I really hate those things. I have to cover my eyes so I can’t see I am squeezed into a little tube. Even if it is open on the end. So I just lay there and pray for everyone and ask for peace. I have felt so icky for the last week. So tired. I actually took a nap this afternoon. Just feel like pond scum ! So…been resting today. Tomorrow I need to tackle this messy house, it has been beautiful today and I hate being inside when it is like that. But…this time I must listen to my body.
    My brother has a pecan tree and they always give us bags of them. I did crack put half a bag. I have them in the freezer til I need them so they are fresh,
    Chris your garden sounds lovely. I have dreams of eventually getting this jungle cleaned up and smoothed out. I have little flower beds in my mind,
    Well, have a wonderful day tomorrow all,

    • Hope you are feeling better today
      Red sounds like he’s settling
      Pecans are so expensive are lucky to have them on hand
      You’ll get your garden done esp when FM gets over and started on it.

      • Chris, with tile flooring a non-slip rug is a great idea. My sister slipped on her tiles so much and they are so cold…beautiful but cold. I can’t take half a dose because I don’t have it and because of the serious side effects, they will never allow it now. It also did not take me through the seven days. The patches are specifically dosed and can’t be cut in half. They are also dreadfully expensive for us…$158 per month. Imagine what the insurance is paying.
        Rockery so wonderful. Hope it’s where you can enjoy and see it from your terrace. Love, Sue

    • Tonie, Pond scum, huh? Hate that but am in the same pond today. My parents used to have a pecan tree and it was wonderful. They are my favorite nut. I get them at Costco where they are so reasonably priced. So pleased you hear form your FM. YES, he has to get out of there before the retirement age changes. Prayers constantly for each of you and for your future life together. I hope he is well and safe.
      Sounds like you are dragging yourself around, determined to do something productive. Good to hear Red is adjusting, even slowly. Quiet here. Sunshine today so Jim is washing his car. More rain tonight.
      No news here except health which is bad and will probably be for the next three weeks. It was so wonderful to feel and accomplish more. Oh well. Serious side effects from patches couldn’t be ignored. I always said I’d make a terrible druggie. Take care dear girl and please take care of yourself as best you can. Love, Sue

      • My dear Sue. Had prayer for you this morning at church. I know He is able. And so do you. Yeah, I can’t stand to sit and do nothing, even when resting. I have to really feel lousy to not even read. ( ever think about the word ” lousy” ? It refers to be overwhelmed with lice ! Singular louse)
        I got a lot done yesterday. And am glad to see the results today. I a, on my second cup of coffee ( well coffee and chicory). I bought FM some Luzianne while he was here and now I really like the smooth taste of it. I ordered me some chicory so I can just mix it with the coffee, The mixed coffee/chicory is very much more expensive. Chicory is supposed to be good for you as well, heart, cholesterol, liver… another added perk ( no pun intended)
        Well, I must fix my bicycle tire. I want to ride some on the trail this week . And then I will rest and crochet some more. Have several things to get finished before Christmas. Take care all.
        Oh , there was a lovely post put on Sues FB from a lady who reads the blog. I would love to post it here if Sue agrees. She feels about this blog as we do. And both of us encouraged her to write here, I hope she does.
        Have a wonderful day

  13. Sue
    It was a beautiful very warm day today and will be thru next week. High 70’s here. Red is doing better. I let him in the yard to eat today. When I went to shut up the chickens. He followed me up and then turned around and went back into the pasture like her knew he was supposed to. Yeah, I would love to get a burro, they are so cute . We will see.
    Hope you feel better tonight
    Love ya

  14. Hello all
    What a beautiful day here ! I am about to finish up my floors and go run the lawnmower over the yard for a trim. I had a surprise phone cal, this morning from my FM. Made my day. He had to work today, sports day for the kids. We spoke at length on politics, his side and ours. They have their election in May and all the people are saying that they will extend the retirement age. Ugh ! So ….he must get out.
    I got the refrigerator cleaned, inside and out, laundry is in the washer, cleaned the kitchen, I have roomba doing the floors, then I must mop. I have to get water and I am going to pick up some BBQ that the local gals are selling for a fund raiser . Supper !
    Resting now, then I must get on with it. End of the day is a wash up for the dogs and for me !
    Hope you all have a wonderful day

  15. Guys, here is the comments this lady left on Sue’s FB page. Very sweet and very true:
    Dear Sue,

    I’m among those Facebook “friends” who were blessed to find you in the cyber skies, and what a blessing it has been. You have helped me regain perspective and gratitude on days I was drowning in my own chronic pain.

    So, it is not surprising to me that I immediately thought of you, dear friend, when I opened an email this morning from Jennifer Dukes Lee, a wonderful Christian writer whose messages provide great insight and comfort, too.

    Her post was entitled “When Your Pain Becomes a Seed for
    Your Purpose.”

    Sue, that is exactly what the pain you endure (which I pray each day will be lessened) has transformed into for me. That “seed” you have nurtured and grown has become a great witness in so many lives.
    And, so too, in mine.

    I speak of you often to my family.
    They agree that it is a little miracle that I found you, and, as with the many wonderful people who share their trials and hope with you, that we all found each other.

    Life is to short not to tell people what they mean to our lives. I hope you might know what you mean in mine.

    As Jennifer says, “Our greatest pains are seeds of our greatest purposes.” But then, you already knew that…

    Prayers and Blessings Always,


    Mary Beth

    • Chris dear, I”m a bit better. That drug really messed with my Sjogren’s something fierce. Never again. Will see what can be done in three weeks. How are you? Love, Sue

  16. Oh sue that’s awful is it any better…was it the dryness?
    Me ….ok eyes bad again tho..or still.. Optician again tomorrow
    On the upside GS and girlfriend coming over stuff in they like to eat today
    Such a drop in temp here today and a cold wind
    DH off Meds for BP again..of course he feels much better but up the BP goes
    He has to go for blood tests soon for new Meds..which he has to start in a week
    Dr has referred him for a cochlear implant but it’s on the only ear that’s left to hear at have to think about it….has to come off warfarin and all.

    • Chris, yep. It was exactly like I had talked about in the blog. Sores in mouth, nose and throat. Choking because I was too dry to swallow. Now just dealing with the aftermath of all that nastiness. Chest was full of fluid..enough to scare me. Friday and Sat were bad due to dizziness and nausea continues. Severe constipation continues. I keep telling doctors I don’t do well on opioids and they just don’t listen. Unfortunately, I can’t think of any pain med that is not an opioid. Hopefully time will take care of this current crisis.
      Glad GS and GF are coming. Bet you’re going to cook up a storm. Enjoy. I know they’ll enjoy seeing all you’ve done to the house.
      Your poor guy. What a time he has had with his B/P meds. I pray he can find a solution. What are the new meds for? Having hope for his hearing sounds great but I can understand your hesitancy. Give it time and find out what the odds are, okay? Much love, Sue
      Your poor man…

      • Chris, sorry..totally left out the problems I had with the eyes. Pretty awful…grainy, day and night and constant drops. Sorry to hear you are having problems. SO miserable and so hard for others to understand until they get a piece of grit in the eye. Nights impossible. Later, Sue

  17. I do so hope the chest has cleared.are the nausea and dizziness due to withdrawal ?
    The sores in the nose are sh.t .they can bleed and get so sore .drs just don’t listen to the side effect problem. And the dryness and constipation result so bad for ibs
    The eyes at night….well prob like you I have to go to the bathroom with my eyes shut too sore to open and have to rush so can’t put drops in…it goes on…
    Yep new meds for DH for bp.he has to have a break before new ones and blood test as he has kidney cysts just to check all ok
    It’ll be a time before all is sorted for the implant for him so I can relax about that.but all maintain it would help his bp if he didn’t have to struggle to hear and make sense of everything…..but tho op for him with how he is…I dunno..I’m sure the hearing is a problem but i don’t think it’ll mean no meds
    So I’m awake it’s 4.30 am and for company dh too,,he is off his meds so is up and bright..I’m used to being on my own .so,he’s made a cup of tea…nice….
    We had two pics of his he took enlarged mounted and framed and up on wall…it perked him up ..but they do look nice.
    Well sue I hope you start having some improvement there .why can’t they find some new meds for pain .

    • Chris, indeed this whole SJogren’s thing is a nightmare. I have never been more aware of it than right now. That is because I have never had such a severe flare as brought on by this med. Still having trouble with bits of bloody nose as it heals, coughing up stuff and fatigue. I know it’s getting better but old problems emerging as they were before patches. I’m not sure they will find anything for the pain right now. All seems to be opioids. We will have to see as time passes. Yes, breathing is easier today as long as I stay hydrated.
      We had an earthquake this morning…it was a 3.8 magnitude. Thankfully, I was asleep and didn’t feel it. Jim did. Gee I hate those things. We had so many of them when I was growing up in CA.
      I do hope DH can finally find a way to get his B/P under control. I know it must be terribly frustrating for both of you with his hearing problem. It would be so good if the implant works and could give him some relief. Sometimes it seems like life just comes at us with too much. Hope your visit with the GS is a happy, carefree time and a nice break for both of you. I know you’re going to eat well. Love you, Sue

  18. Good morning all
    Sue so glad to see you back. But so sorry you are having such troubles. Chris, I didn’t sleep well last night either, even after a whole sleeping pill and melatonin, just couldn’t rest. So today will be a long one. Hope do gets all his mess sorted out. Ya’all have really had a struggle with this. Yes, I can see where his b/p would go up with this frustrations of hearing. I bet you are like me and automatically speak louder to everyone until you realize you are. With Ms Alice, my sister and brother all being hard of hearing I do that. Until I realize I am doing it. Thank goodness my hearing is remaining good, even with my tinnitus.
    Well, must muddle on with this day. Jennie should be on the move soon and soon back on with us. I miss her. Lyn, Donna, BSL, and all of you. And the new people who just read. We would really love to hear from you. This is not a closed group. Anyone is free to speak and we love it ! Sue I am having another episode with my ears and the rash again this morning.
    Take care all

    • Tonie dear, sorry to hear you had a bad night. Was something hurting more than usual? Hope today is okay for you and you sleep better tonight. I must agree with you we haven’t heard from some of our friends for awhile. I think Jennie is moving on the fourth or fifth of this month. I know she would appreciate positive thoughts from all of us.
      I am sorry to hear the rash has returned and the ear bothering you. Hope your new rheumy has some ideas and is current on chondritis. Do have as good a day as you can. Jim is off to Portland today on an errand and I’m having a quiet day trying to stay up on the news. Not sure if it is good or bad but there is a lot of it. Take care, Love ya, Sue

      • Sue
        No, nothing pained more than usual, just one of those nights I can’t sleep. But, getting ready to pack it in at 7:30. Very tired and worn out.
        Hope Jim had a good trip, and you a restful day. Earthquake ?? They scare me !
        Love ya

  19. Hya
    Before I forget enthesopathy
    Had a letter from consultant today and that’s what I have in my hip
    Have to see him in another three mths
    Saw optician today pressure up again in that eye …all very odd..that’s my sorest one with my sjogrens too
    DH has moles to be seen tomorrow at hosp
    His bp is up
    Life ain’t easy is it?
    Had good time with Gs and gf .she was saying he was looking forward to the food all day . Ahhhh
    They were teasing me what they have got me for Xmas and where I was going to,put it…but won’t tell me
    Gave him a box full of his old toy cars we found on moving..and in it was that game ,pick up sticks,…did you have drop a pile of thin sticks and have to pick them up with a stick without moving any … old fashioned ….but we played it all together and had a good time
    Oh Jen isn’t moving till 22 Nov .still a lot of organising I know to do for her there
    Well gonna try to sleep
    Hope you benefit from the sleep and feel better .the rash back that’s sh.t
    Yep,i do speak louder than I should my DD is always shushing me
    Hope you got what you wanted out of the day. ..earthquakes now..never a dull moment !

    • Chris
      Yes, we had pick up sticks. Those were fun games. There is one I still play with the kids, Jenga . You should get that one. It is a pile of blocks and you have to remove one and not cause them to fall. I love board games. We used to play Trivial Pursiut a lot.
      Well, must run, have to hit the store before work. Still having the rash and burning ears this morning, comes and goes all day. Hopefully we will find an answer.
      Have a great day all

      • Yep we have all those too tonie.good fun.not played for ages
        Wish you could find out what this all is it must be obvious to the Drs you would think…..a silly thought but could it be a new washing powder on your sheets etc.
        Dh gotta have a biopsy of a mole now…they think it’s only basal he’s had so many But could have done without it at moment
        Sue thinking of you

    • Chris dear, the earthquake was no biggie just found it an interesting item to share. They had them in Oklahoma that day also. I’m so pleased you had such a good, fun visit with your GS and his GF. I used to love pickup sticks. Jim doesn’t like to play games so I only get practice with the youngest two grads. Now my GS at thirteen is only interested in computer stuff. GD and I play games.
      It’s so much fun to know the kids enjoyed your food so much. We all seem to have such rare moments and chances to share with our grands. They seem to become more dear each year. Maybe that’s because we know they will soon be adults. Hope DH’s moles turn out to be a basic skin cancer. I am sorry to say I have never heard of that condition for your hip. We must use a different term over here. It sounds like something to do with the nerves. Pray you get some answers.
      Thanks for updating us about Jen’s move. What an overwhelming job to do, especially when you feel lousy. I’ve thought about her so often. I know she will be so relieved to have it over.
      Have had a bad week here doing without the meds and dealing with the side effects. Bad case of IBS. Slept with heating pad on gut all night…when I slept. Sure it will pass. Love, Sue

    • Chris, last night I was wondering if your ocular pressure goes up because you are on any steroid drops. I know those make mine go up and go back down when I stop them. Just wondered. Love, Sue

      • Not on any steroid drops
        But on looking at my history of pressure the optician said over the years they have gone up a lot and down a lot ..only this time only up over the three mths
        enthesopathy…..apparently is after an injury the tendon can get inflamed where it attaches itself to the bone ….funny thing … other hip plays up in same spot
        So its physio now

  20. Morning all
    Chris, no not detergent or soaps. Have used the same all natural Shaklee for years now. Nothing new on any front, I stick to what works for me in that line, cleansers for the body as well. Try to have no chemicals in them. But..the main thing is the increased pain and fatigue . So sorry about Dr and the biopsy. That is another Dr I need to visit. I have several spots on my face that need tending to. One on my nose in particular. No growths just little spots of red.
    Well, beautiful sunshine today. Going to swim, then see what the day brings. Got a note from ,y FM this morning. Says he despises his job more everyday, because everyday are more problems and complications from “this uncivilized people” . One more month and he can put in for his retirement. And I know it will be like the last month of pregnancy for him. Haha !
    Well, have a great day all. Sue, prayers for you this morning my friend
    God bless

    • Tonie, do you think the chlorine in the pool is causing any of the pain in the ears and the rash? Is the cream not helping? I will be almost as relieved as you will be when you can get some answers. Hang in there. I am so sorry to hear your FM is having such a bad time at work. The stories coming out of France are so tragic. That once beautiful, historic nation being trashed by immigrants who don’t appreciate it…hideous. I hope something can be done in the future. I also pray his future is over here with you.
      I’m still fighting nastiness from the patches but better each day, especially the breathing. Gut bad since yesterday, methotrexate day here. Not much news really. Weather nice today after rain all week. George is good..Jim and he both as ornery as ever. Love you, Sue

      • Sue
        I don’t know. I take a shower immediately after swim, so it shouldn’t. And while there is chlorine, it is not as bad as some, it is salt water as well. So glad you are getting a bit better. It cooled down a lot last night had a frost on this morning. Stilll lazing around on the bed. Saturday is my resting morning. I have to go sing at my brothers church tonight, and teach class tomorrow. Then Monday the rheumy, then Tuesday up early to go vote before work. It’s gonna be a lonnnng week !
        Yeah, FM has watched his country going down. He is so disgusted and fed up. Praying for his swift return
        Love ya

  21. Tonie, it does sound like a long week. Is the rash and swelling ears any better? Chondritis for sure because the ears are cartilage. Pray the new rheumy is smart and interested. Love, Sue

  22. Tonie
    A lot of news on France and the conditions there at moment…so much trouble
    It’s all frightening
    Yea we are getting all the news about the USA elections …be on all day over the Tuesday …oh dear!
    Very cold here and it’s bonfire night. Fireworks going all night ..well have been all last week really . supposed to go to freezing at night next week
    Got a tallish eucalyptus tree to put in a pot for round the front area we had fenced .Will have a nice coloured will give height to the area too
    Hope you are still improving sue,

  23. Chris, Hope physiotherapy helps the hip. Thanks for the info about your eye pressure. Funny isn’t it how we have the same but different language. I communicated with a friend in Belfast yesterday and couldn’t recognize any of the meds she spoke of. Hope you’re having a good weekend. Love, Sue

  24. Yep it’s funny how different the same language is and the spelling
    Just wondering where everyone is….perhaps you all still communicate on Facebook .
    Weekends .it seems I usually do housework then keep the week free for whatever happens
    Hope all ok

    • Chris dear, Can’t sleep and thought I’d check in. I know Tonie is having a rotten health weekend right now. So glad she’ll be seeing a new rheumy next week. We all miss Jen who I must check in with again on FB. Everyone is being a bit quiet. Maybe the new blog will help. It will be up tomorrow or the next day.
      Your potted tree sounds lovely. I’ve become strictly a pot gardener and I don’t mean the drug. They are so much easier to weed and take care of. I have some gorgeous full geraniums that are still blooming too much to cut back for winter and they’re all in pots. I have a gorgeous rose colored one with standard and a climbing one in a lovely blue pot that I put on our settee on the porch so it sits right in front of the front window and can be seen in the living room. I was just thinking tonight about decorating a little pine or maybe it’s cedar Xmas tree I have out front when the season rolls around. I know you’re having a wonderful time with your landscaping. I love colored or plain bark. It makes a yard look so completely and does discourage weeds.
      I should be sleeping but have a stomach ache so am checking things online. Hope you’re resting well. Have you been sleeping better on the new mattress? Later, love ya, Sue

      • Wow that’s unusual to find you on at this time…I hope your asleep now .i always say no more pots but I end up having more
        .we do have bark on the gardens but I meant the bark of the tree’s a snow gum and has a wonderful silvery colour..only thing with bark on the garden is the birds come and put it all on the path! Oh we have honeysuckle still in bloom?,
        Hope your stomach improves ..mine is playing up last few days..I bought a spiralizer and ate a lot of carrot wondering if that did it ..well not a lot just two carrots ..but you never know. It’s something on add to salads as I cant eat cues or toms
        I mite decorate an outside tree this year be different. We do have an outside electric plug we’ve never used
        I hope you get some answers to feel better, on Monday I think you go to hosp….
        how is your brother who was in hosp..he had an op
        Look forward to new blog and hope the tum eases

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