let's go girlfriend..arm in arm.... onward and upward only.. no backstepping!!!
[QUOTE=kelstev]Glad the injection helped...curious...did it hurt a lot or was it tolerable when it was being done?[/quote]
I find having any joint injected an ordeal and this one was no exception. However, as always the anticipation of the discomfort, for me, is always worse that the actual procedure. After the initial injection of local anesthesia their was no pain except for one brief moment when he pulled down and out on my jaw to open the joint.
The injection directly into the joint was not painful but the feeling of pressure made my left eye tear and I has a short-lived "ice-cream" headache.
I have some bruising from the manipulation of the jaw and a slight amount of swelling directly over the joint.
[quote]
[QUOTE=babs10]Hi (((Shug))) I'm a little behind on my posting. Am so glad that the jaw issue was helped with the injection....don't even want to think about it!!!!
Are there any drugs out there that will counteract the colonization? Other than Pred. Any of the chemo drugs? Can you try Humira and another dmard to stop the inflammation? This is crazy that it's gone to your heart and lungs in such a short time. It's a real battle for you but you still can win. It's not a dance any longer but all out war against the disease. Take care and have a restful day. Lindy
[QUOTE=LinB]
[quote] This is crazy that it's gone to your heart and lungs in such a
short time. It's a real battle for you but you still can win.[/quote]
I was stunned at how fast both my heart and lungs were affected...but in retrospect my renal amyloidosis went from 0 to failure in a couple months. Secondary amyloidosis is an aggressive disease. AA amyloidosis, from chronic inflammation, is the result of what are called
that are constantly being produced in very large numbers in the liver as it reacts to chronic inflammation. And to complicate things just a bit, long-term haemodialysis can result in another type of amyloid protein colonization, so one more thing to be constantly aware of.
[quote] It's not a dance any longer but all out war against the disease. Take care and have a restful day. Lindy "Chemo therapy and even bone marrow transplant are often options with cardiac involvement. However, none of the physicians recommend pursuing that course without a healthy renal system. The cardiologist in SLC was very blunt and told me his opinion was that I would not survive long enough to know whether chemo was successful or not"
I thought I remembered that chemo and bone marrow were used but didn't take into consideration your decreased renal function. You have a great medical team and a wonderful support system to take to war with you. Lindy
[QUOTE=LinB]
[QUOTE=Spelunker]Tuesday, I have a second cardiac evaluation as it _seems_ my heart is "labouring" in its rhythm. I am confident that is is simple a hiccup and that cardiac output and function is adequate.[/quote]
Ah, deep sigh, shoulder shrug, and then a deep breath.
The labouring heart has been diagnosed as "stiff heart" a complication of amyloidosis. Next week I will be consulting via phone with many of the "team members" while we decide on a course of action, or inaction, as the case may be. Cardiac output has dropped about 22% in two weeks---not good. Pulmonary output remains
Bob, bless him, made me laugh when he said that my heart has always been as hard as a diamond, so this should not be any kind of a hindrance.
Shug, DAMN, I've been wondering how you're doing. Is there a treatment plan or don't you know yet? I guess you won't know till after the phone consult. Sometimes you just have to find some humor in a situation....that's how i deal with it. Lindy
[QUOTE=LinB]. Sometimes you just have to find some humor in a situation....that's how i deal with it. Lindy[/QUOTE]
Yes, humour has become my crutch, cane, and walking stick. Without Bob's finite and spot-on comments I would, certainly, be wallowing in the depths of despair.
Right now any intervention via medicines is ultra limited secondary to zero kidney function...the tentative plan is to implant a pace-maker to keep cardiac rhythm as level as possible. We shall see what the long-distant members of the team come up with.
Another implant! at this rate I should soon qualify for bionic person discount at every retailer in the nation!
Keep that stiff upper lip to go along w/ the other body part....
You're remarkable.. I don't care what Bob says about you
Hi Shug
You have always been so supportive of others on this forum and you sure deserve all the support you're getting right now! This disease I'm learning is so unpredictable. I'm so glad you have a great team of experts on your side fighting for you as well as friends and Bob's sence of humor to help you through this. Please keep us posted , even if you feel like you're complaining, you'll always have support on this forum. Try to embrace those days you feel better, keep thinking ahead of how wonderful your holiday's will be or things that make you happy! Do you have any pets? I've heard dogs are great little companions and can do wonders for a person's spirt. (I wish I had one myself!) keep smiling
Kelly
[QUOTE=klynn141]Hi Shug
[QUOTE=babs10]
Keep that stiff upper lip to go along w/ the other body part....
You're remarkable.. I don't care what Bob says about you
[QUOTE=waddie]... Know I will be thinking of you and humming my special song, visualizing a strong heart to match your strong will.
Waddie
[/QUOTE]
Waddie, my dear, your kindness and understanding humble me. I am beyond thankful to have folks like you in my life.
Thank you... ... ...
I'm sorry to hear about more burdens visiting you Shug, but I feel confident your remarkable attitude will see you through. I hope the remedies are simple and recovery swift.Thank you Hillhoney, I appreciate your confidence in me. I will do everything in my power to prove your confidence was justified!
Shug, does your herder try and herd the ankle biters? Our cow dog spent 16 years trying to get the cats inline, sort of like nailing jello to the wall. They're so earnest when they're herding and funny when it's the cats. We let Dalai loose in the field with cows and she was terrified. We had to rescue her. Our animals make each day more present and comforting. Lindy
[QUOTE=LinB]Shug, does your herder try and herd the ankle biters? Our cow dog
spent 16 years trying to get the cats inline, sort of like nailing
jello to the wall. They're so earnest when they're herding and funny
when it's the cats. We let Dalai loose in the field with cows and she
was terrified. We had to rescue her. Our animals make each day more
present and comforting. Lindy[/quote]
No, but they do herd the guinea fowl who are surprisingly herdable, at least as far as the biggest tree in the 'hen yard'. And then, opps they sit amongst the top branches and torment the dogs.
However, the ankle biters herd the Aussies, especially the smallest of the pack, Lily, who at 4.5 pounds has a 300 pound attitude and Polly, a pound and 1/4 large, has recently developed an immense sense of protectiveness toward me and does her best to keep those big ol' four-footed fiends at bay. I have become Polly's job of work.
I agree about our furry-faced friends adding to our lives: quite honestly, I am not sure what I would do without each of them!
Shug, I don't know how i missed this thread..
I really hope things work out for the best..
I agree about humor, its as necessary as breathing for me..
You have always been so supportive of me.. I hope I can return the gift..
Shug,
God Bless you, girl. Sorry I didn't catch this thread earlier! You are in my prayers, hon and I am so glad the injection worked! I get RA in my jaw for a couple of days sometimes, but I cannot imagine having it for longer. It sucks! I will continue to keep you in my thoughts regarding your heart problems. I can't even imagine how stressful that can be! Keep your chin up! All will work out, of that I am certain!
Kathy, thank you so much! The support and comfort I have received from the members of AI has become my cornerstone. I am thankful for each of you beyond what words can express.
Schell, thank you too for your prayers and good wishes. They keep me mental strong and able to set one foot in the front of the other day after day.
I am, I *think*, dealing very well with the stress of the past few months and find a niche in which to tuck each new difficulty until I can garner the fortitude to deal with them one-by-one and vis-à-vis.
I am always inspired by the depth of strength and the breadth of courage members of this forum display day after day.
Prayers Shug. All of my strength I send to you. It will undoubtedly take me more than a couple of days to come to an understanding about everything that was said, proposed, and formulated in the nearly two hour long telephone consult this AM. It was nearly unanimously decided that a pacemaker would not be of benefit; overall prognosis is poor; reduce corticosteroids to less that 80mg/day by mouth to eliminate the possibility of a secondary infection form repeated venous punctures. Provide palliative support as necessary...
Not all bad news, but certainly not much good news. Now to shake off the infernal sense of doom and get on getting on with living life to the fullest
Yikes! You must get tired just trying to think about everything. Hope it all works out for the best.Shug, I understand what you're saying. There are moments when I realize that this is the most insidious of any of the diseases. I'ts sneaky, evil, corrupt, and all consuming. Both of our hearts and lungs are invaded but mine has manifested itself in a different way.
I hope that each and every new person reads your story on this forum. If they learn nothing else I hope they learn that the ONLY way to have a fighting chance with this disease lies in taking the medications that are now available or are available in the future.
My heart is with you, as are my thoughts. This has been gruelling for you. With hope that the side effects stabilize. Hugs, Lindy
Shug,
I feel so sorry for all that you and Bob have been going through. Even tho' it seems like you can not catch a break you never ever complain. I really don't know how you do it day in and day out. I have learn so much about RA from you and I have also learned the graceful way to approach every single thing it throw my way.
You are a great teacher Shug and someone I consider a friend and mentor. I speak your name out loud to the Lord everyday during my prayer time and I will continue to do so for you and Bob.
Take time for yourself and for Bob. I will check in on you later in the weekend.
Sent with warm hugs and Love...
[QUOTE=wanttobeRAfree]Yikes! You must get tired just trying to think about everything. Hope it all works out for the best.[/QUOTE]
It is tiring and I have been taking a vacation day each week. On that day we have agreed not to talk about all that must be talked about, to sit on the verandah early in the morning and listen to the world awaken around us. To cook a meal redolent with the waning produce from the garden, to share a bottle of sparkling cider with the same gusto as a bottle of sparkling wine, to listen to music, to read poetry, to cuddle (sans all the tubes and the background hummmmmm of the HD appliance) surrounded by all the furry-faced friends, and to turn our phones off. Peace and contentment.
[QUOTE=LinB]Shug, I understand what you're saying. There are moments when I realize that this is the most insidious of any of the diseases. I'ts sneaky, evil, corrupt, and all consuming. Both of our hearts and lungs are invaded but mine has manifested itself in a different way.[/quote]
Thank you Lindy. I KNEW, upon diagnosis, that this RA comorbidity was fatal: I just did not understand that it would reach that point so fast. So fast...
[quote]
[QUOTE=ToBPainFreeAgain]... I have learn so much about RA from you and I have also learned the graceful way to approach every single thing it throw my way.
You are a great teacher Shug and someone I consider a friend and mentor. I speak your name out loud to the Lord everyday during my prayer ...[/QUOTE]I am humbled by your words and tears of delight have replace those of complaint and sadness. Thank you. Shug
Shug, I am sorry to read this news. I am constantly amazed at the beautiful way you handle yourself in facing what you must. Your courage in your heart is a wonder. I wish I could hold your hand and really walk beside you.
You are a wonderful teacher and I, too, am grateful for your sharing the journey. I look for the beauty to be found in each and every day... you have taught me the importance in doing so.
Waddie
Another physician's appointment and, at least from where I recline, another day of disappointment. There has been further denigration of both cardiac and pulmonary output as well as a marked advancement of amyloidosis in not only my chest but now also in my abdomen-specifically my liver has now been invaded.
Additionally, my white blood cell count is so low that I wait in my car until the nurse comes to escort me directly to the exam room---I feel rather like a leper!
Both the cardiologist and the pulmonary specialist have urged us to cancel our upcoming celebration secondary to both the amyloidosis advance and the marked drop in WBC. I keep saying we need to proceed as planned, however Bob (being more logical and ultimately rational than I) agrees. I think we should simply go forward as planned, but I am not so foolish nor reckless as to risk my well-being. So---...---...it seems as if there will be more than a modicum of conversation, discussion, debate, and decision regarding the next month.
Thanks for listening to me whine, moan, and complain.
Shug - I am so sorry. I will keep you in my thoughts and prayers. You are a real fighter!!! Keep it up.
Kim
[QUOTE=Spelunker]
Thanks for listening to me whine, moan, and complain.
[/QUOTE]Not a whine or moan.
You are in my thoughts Shug and I can only wish for a more comfortable time in the coming months..
Hi Shug, like you, I think you should go ahead with the celebration. Everyone else will do what has to be done. This should be a day of joy for you, no matter what.
You're in my heart and I'm thinking about you and sharing mediatations with you. Lindy
Oh Shug- what disappointing news. Both for your health and the kabitz on your celebration plans. Not fair! Why exactly are they telling you to put it off? Because of your WBC? Will it make you susceptible to catching something which would make you more ill? Are they saying in time you will be better enough to do it or just call it off? How about if you wore surgical masks? I hate to think you have to give up on those wonderful, romantic plans.
Well you could have a more private ceramony. Not what you had planned but still romantic. We all had the flu last week and told my grandmother who is 88 not to come over. She said she is starting to feel like the one who is sick. We want to protect her but I do not want her to die of loneliness. Shug you are in my prayers each night. We are going to compromise: renting the Knights of Columbus Hall which has a commercial kitchen, complete with a rotisserie large enough to accommodate our requirements. No one, not even those bringing their own lodgings with them (motor homes, travel trailers) will stay here, rather they will stay at one of two local RV parks; others will be 'put up' at a motor lodge in town that we negotiated a reduced three-night-stay with.
I will go to the celebration for three hours to exchange vows, mingle with the guests and then home and back on HD. The next day we will meet at the Hall for brunch and good-byes.
The reason for the concern on behalf of the doctors is partly because of the chance of infection secondary to my very low WBC, and partly because of my deteriorating cardiac and pulmonary status.
Now! back to the planning and the logistics.
Morning Shug, I just knew that there would be a way to make it happen. I'm thrilled that you can still have the ceremony and celebration. It's way too important. LindyLindy, it took more than a few minutes to get this plan in place: there were moments when I felt like I was being pelted with stones, from several different directions, but I prevailed!
Shug, everything that I would say has been said already and I can't improve on that, however I want to wish you and Bob a wonderful celebration on your special day.
You have set a wonderful example of courage and stamina and I will try to carry on with that in my life.
Nice warm hugs to you and Bob.
Shug, what's a few stones pelting you? That's nothing!!!! So happy you prevailed. You actually have me thinking about renewing our vows. Will keep you posted as the winter approaches. Maybe an early summer ceremony. I'm anxiously awaiting your renewal stories and descriptions. I know it will be perfect for the both of you. LindyYou sound busy Shug. Glad you worked it out. Enjoy your special day.
Shug,
I am sending warm hugs and love to you and Bob.I'm so glad you figured out a compromise! From the sounds of things it will be a great ceremony and you will be able to participate yet protect yourself as much as possible. Renewing vows is such a wonderful event and I know from reading your posts how important it is to you. So go girl!!!!
I want to take this opportunity to thank everyone for being supportive, for caring about me, and for expressing your concern for both me and Bob. I realize that I have nearly monopolized the discussions over the past few months with my on-going saga and am appreciative that you have provided me with the safe-space in which to do so.
I know that I have been far too self-centered and far too serious for far too long. I recognize that I am no fun and that I add nothing to the overall humour, spontaneity, and even less to what should be the upbeat flavour, of this discussion forum. So, once again I thank you for indulging me.
My very best wishes to each and every one of you, Shug
oh my goodness!! Shug!!
You have NOT been self=indulgent!!
Look about us.. there is nothing but support forthcoming FROM you to US!!
Do not for one moment consider that you are not deserving of any and all attentions that come your way.
My friend.. You know how I feel.
Please don't thank me for caring or expressing concern - that's why I post and it's who I am. I don't need thanks but it's nice to hear.
Support should come naturally and no one on the forum is self-centered. we're in pain, dealing with a dreadful disease and incapable of doing things that we loved. That doesn't make us self-centered. It's hard to be witty and the life of the forum when you're attached to a whirring box. I don't think any of us expect you to be. We're the ones who should thank you for allowing us to share in your journey and for supporting each and everyone of us.
ENOUGH! So how you doing today? It's overcast here and looks like some more rain may fall. The fields are fallow and the trees are colorful. I personally can't wait for All Hallow's Eve and the trick or treaters. We're going to our friends house on trick/treat night and help them hand out treats. They live in a development where there will be plenty of kids. We're dressing as the Adams Family.
Hi Snow.
Lindy
Hi Babs, you sneaked in when I wasn't looking. You've been missing in action about as much as I have been. How are you and what are you up to? How's your grandson? Ready for Halloween? LindyI agree with Sno & Babs. Please do not feel that way. Life is what it is- we laugh with some, we cry with others. There are lots of in betweens. At this time of your life you need support. Nothing wrong with that. I have also seen you continue to be supportive even as you go thru your own trials.[QUOTE=Spelunker]Lindy, it took more than a few minutes to get this plan in place: there were moments when I felt like I was being pelted with stones, from several different directions, but I prevailed! [/QUOTE]
GREAT!!
Shug, I am so glad you were able to find a way to celebrate..
these milestones are hugely important..
And no you aren't monopolizing, it's wonderful to hear from you..
Gosh Shug, I don't even feel that what you do is complaining but rather talking and sharing and educating. Please don't stop, we all need a place to go to vent if for no other reason than to save our loved ones a bit of added stress. Mostly, though, we
need to talk through things. I know you know all this because you have so often offered me the opportunity.
Indulgence? Never! Just returning the kindness! My ears are yours {{{{{{Shug}}}}}}, keep talkin'!
Thank you all. I appreciate your uplifting support. Your care and concern are priceless.
HI Shug,I often come here for inspiration and you are it! God Bless, much love and prayer from Janie.
damn, Shug!!
IDK how you can stand so much on your plate! You're amazing that you even take a moment to come here.. and help to educate us as to what can happen.
I am SO sorry it is happening to YOU
No wonder you haven't been around...ugggh- that is not good news at all- so sorry to hear it! Hope the headaches have at least gone and you can keep comfortable. I have been having my share of glum news and bad things happening in my life but when I read something like this I can say- be thankful you have your health-that's the important thing.
I wish you all the best.
Oh yuck! I hope that you are feeling better! Sending good vibes your way!~~~~~~
You're a strong woman - not sure how you do it, but you amaze me. Take care of yourself.Oh Shug.. I am so sorry to hear this.. Why do we downplay our health issues? I'm another one who waits til things are nearly unmanagable..
Please feel better, and try to expect that the neurologist felt he had to tell you the worst case scenario.. You aren't just anyone, you're Shug!!
I had been praying that you would not have to experience this. We are here for you Shug.
All I can do is express that we care. If you need to vent we are here. Your true friends and AI family. All of my love and strength I send to you. Many prayers.
This is not good news, not good at all.
You have more fight than I think I would have given similar circumstances.
Oh, Shug, I am so sorry to hear this! In spite of all you are going through, you are always there for someone else, giving support and prayers. My prayers are with you and your family. Lets all hope and pray that the doc's worst case scenario is far down the road and you will have many good days coming. Take care of yourself and keep in touch.Shug, call me what ever, but is there anything that I could do for you from a graphics point of view that may help lighten or brighten your days.
This could all be done behind the scenes with out anybody knowing just what is taking place, and will remain that way.
I can be contacted thru my contact page on the blog if you wish for further communication in this area.
Anything that I may do will be sent electronically and will be yours to do what ever.
{{{{{Shug}}}}}, I am heartbroken, but wide-eyed in amazement at what a wonder you are! Here you are, still sharing, still teaching, still caring enough about all of us...
Blessings to you and Bob.
God bless you Shug! Sad, sad news. Much love and prayer, Janie.XXX
Hi Shug, I was hoping that this was way in the future but it seems like it's progressing much too rapidly. I can only echo what everyone else has said. I think of you daily and hold you in my heart
I am saddened to read about your latest medical issues. You are so strong, caring and such a beautiful person. I know you can handle this. You are a very strong woman and will pull thru this. I think of you often.
Phats
Shug,
You are in my thoughts and prayers.
Shug,
I continue to keep you in my prayers.
No matter what our differences Shug, I am so sorry that you are not well. I will keep you in my prayers. and speechless...
All my love to you, Shug.
(((((((((((Shug)))))))))))
Ill be thinking about you my friend....stay strong
Thanks again and again. I have another appointment with the neurologist tomorrow to decide how best to handle these debilating seizures. Of all the signs and symptoms of uncontrolled RA inflammation that I have experienced, seizures have been the worst, by far. I spend what seems like hours regaining a sense of where/who/why/what after even the most brief episode.
My beloved Bob has spent most of the past five days on the verge of tears---that wrenches my heart nearly to the breaking point.
My very best wishes for moment of joy, continuous pleasure, and elemental joy to each of you!
My heart goes out to you- praying that the neurologist can offer a solution and for strength for both you & Bob.Shug, here's hoping that the neurologist has some answers and relief for you. Here's hugs for both ((((((((you))))))) and (((((((Bob)))))))) It isn't easy for him, Stan has been through it all with me and I'm a stronger human being because of him. LindyShug, I'm praying for you and Bob.
LeilaI will be thinking about you and Bob tomorrow Shug, as I do everyday and hoping with all my heart you find some ease. Peace, prayers and blessings to you both.
So...now I add two other meds to the mix: Depacote ER and Lyrica in addition to the phenobarbital and dilantin. We are starting at relatively low doses of both to "test the waters" of my compromised liver. This not having functional kidneys is a real roadblock to many treatments for many
complications of complications!
Shug -will keep you in my prayers...wouldn't even know how to walk a mile in your shoes. You are doing a great job of it and my deepest wish for you is to stay comfortable. Let us know how things go.
[QUOTE=Spelunker]So...now I add two other meds to the mix: Depacote ER and Lyrica in addition to the phenobarbital and dilantin. [/QUOTE]
Little to no response to Depacote etc.. I am now experiencing 20-30 seizures per 24 hours and am weary, so weary. I loathe being so disoriented and discombobulated. I admit to envying everyone who has the presence of mind, physical strength, and emotional endurance to quarrel, argufy, dispute, scrap, wrangle, and dust-up with those that you view as opponents...how can anyone suffering the
slings and arrows of outrageous fortune be opponents, enemies, and generate so much angst, anger, and finger pointing?
I know, I know, I am beginning to sound like Rodney King, "Why can't we all get along?"
Tearfully, Shug
Spelunker ( I love the name) a person who explores caves? Am I right ?
I was taking Lyrica at one point , I experienced terrible dizzy spells and nausea,
The fact that you are having so many seizures must be so hard to deal without somebody arguing with you too. I wish you well.
[QUOTE=kalamazoo]Spelunker ( I love the name) a person who explores caves? Am I right ?
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