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[user=1670]mj47[/user] wrote:
The part about him still being him & the words just being a manifestation of his fear & powerlessness really hit home. They triggered a call for compassion from me….not that I'm devoid of compassion – far from it!! But, sometimes I think there's a need for extra love. I guess I'm there. I gotta say I'm so thankful for all the support this forum provides. It's fuel for the ones running on fumes!
So, my hubby was on 50mg of minocycline for 5 weeks, then he went to 100mg & has been doing that for 6 weeks now
About 3 weeks ago, he started having burning in his stomach. He has been taking pepcid at night for a long time, so he has taken a few in the morning to help & he started chewing DGL & it seemed to help as well. Sometimes, especially during big stresses, he gets a pain in his right side under his ribcage.
Last year, he began having this same stomach burning & pain in his side that triggered an incredibly horrible anxiety state that lasted for about half of last year.
The burning made his throat feel like it was closing up & then the anxiety began.
Anywho, needless to say, this stomach burning issue has made him leery that the anxiety would come back unless he got rid of the thing causing it (in his opinion, the pred). So, he's been able to get down to under 2.5mg of it and he wants to get off completely in the next week or so.
It doesn't help that on New Year's Eve, a part of his tooth fell off. He has bad teeth & the dentist, or anything relating to his teeth, is a source of great anxiety to him.
Hi MJ,
Wow, such an outpouring from everyone here! Everyone understands what you're going through and I think it was wise lady, Judy, who brought up the subject that really there is not much difference between the emotions felt by caregiver and sufferer. The emotional suffering on both sides of the coin is like a mirror image. The person suffering feels powerless to carry their equal share of responsibility and the caregiver feels equally powerless to make things right.
My husband and I have been married 25 years and I've been through cancer with him and now he has been through RA with me. I suppose each of us has seen both sides now – in sickness and in health – which has brought us closer to some understanding of the pain and fear we've both had to endure. We've had our victim and “why me?” moments, too…the anger “spillages” of the unfairness of it all. Somehow, though, it's got to a place where it's okay to spill our guts and neither of us takes it personally. It just is what it is and that's okay. It hasn't been easy arriving at this place, but communication has been key…me telling him when I have felt like crap and him telling me when he's on compassion burn-out.
I think the difficult arises for caregivers when the natural anger and inevitable guilt that follows sets in. We're supposed to feel compassion for someone who is physically sick – that's what good people do, right?…but when a caregiver goes through compassion burn-out, who do they turn to? The guilt is monstrous. I remember feeling that way when we were through the worst of my husband's cancer treatments. When I could finally start to breathe again, I suddenly realized how how much internalised anger I felt…not at him, like Michelle said so eruditely, as he was just so courageous, but angry at the situation…the pain and suffering he went through. Marj is right…it's so important for caregivers to have time for themselves, too…to remember who they really are. One of the most healing things I've ever done was to remember my creative side and go out and do something I loved doing. It somehow revitalizes the spirit.
On to protocol issues…my guess is that the recent changes in doses and lowering prednisone, in addition to the stresses of work and holidays, have probably got a lot to do with what your hubby is feeling right now.
Some things that came to mind as you were sharing what is going on with him, physically, right now were:
- pain in upper right quadrant under ribcage can be related to gall bladder issues (sludge/stones). Has he had this checked out? This kind of problem can cause reflux, bloating, pain, gas, burping and general abdominal discomfort (knifelike pain which can radiate into the mid-back and right shoulder). Milk thistle will definitely help, but lecithin should also help to thin bile and help things flow a bit better. I recently did a liver flush, which I've done before and this can clear GB problems, but advisable to do it with a naturopathic doctor's guidance when first trying it. Constipation can make things much worse, so keeping the bowels moving is really important. Also avoidance of bad fats, but an increase in liver-friendly good fats is helpful.
[/*:1sajbjnx]
- longterm use of pred is a demon for sure and it won't be making matters any better unfortunately, so weaning off is a good thing…but slowly. Takes time for the adrenals to start producing it's own cortisone again and weaning too fast can result in the need to go back to higher doses again and AP treatment failure. Unfortunately, if there is any chance of stomach ulcer, too, pred can delay healing, but aiming to come off those last few mgs of pred in the next week or so may be way too fast….just a heads up on that. 😉 Those last few mgs can be the most challenging of all. Your hubby might like to read about how others have done it here to figure out timings for this.
[/*:1sajbjnx]
- is your hubby making sure to remain upright when he takes his minocycline for a couple hours after? Taking it at bedtime or just before lying down for a nap/rest is lethal, as reflux or a stuck cap can cause horrendous esophageal burning and very bad sore throat, making swallowing painful and difficult.
[/*:1sajbjnx]
- has he ever been checked out for Heliobacter pylori infection? This is a nasty spirochetal organism that can cause severe gastritis, reflux and stomach ulcers. It's an infection that has been tied to RA, but being a spirochetal organism, I wouldn't half be surprised if it manifested as all kinds of other AI diseases, as well.
[/*:1sajbjnx]
- teeth, a huge potential source of systemic infection and also another type of spirochetal infection linked to rheumatic diseases. There are some folk who know it when their teeth are infected, because they feel unwell systemically. Getting teeth cleaned up and in good shape is really important.
[/*:1sajbjnx]
- anxiety…well, yet another spirochetal organism – lyme – and its nasty hitchiker coinfection friends – is notorious for this.
[/*]
I know this is so much to take in, MJ. However, if your hubby gets angry enough, it may even turn out to be a blessing for him as it may provide stimulus to take the reins in his own healing, which could prove very empowering. It's so difficult for caregivers to know where the balance lies between care-“giving” and care-“taking.” Giving care to someone incapable of doing it for self is one thing, but the lines can become blurred when caregiving enables a person to reliquish self-responsibility who is otherwise capable of taking care of their own needs. It can be a huge pitfall for both caregiver and sufferer knowing where to draw that line, as it can result in both parties feeling drained and powerless. Re-drawing that line in the sand at intervals may be critical, especially as improvements start to occur. 😉Please don't feel you need to reply to any of this…these were just ruminations that came to mind that may or may not be helpful in figuring things out. Instead, please just use the precious time you have to go out and do something for *you* – you deserve it, MJ!!!
Peace, Maz
[user=1758]Roz[/user] wrote:
Dear Michelle,
You are soo lovely and beautiful.
May your family be blessed abundantly with heavenly joys, and earthly blessings.
You are a JOY, Roz
Wow. I'm very humbled by this – thank you so much. Truly…thank you!
May you and your family experience the very same blessings you placed upon me and mine!~Michelle
P.S. My mom was a nurse for over 30 yrs. She was an awesome nurse. She nursed the elderly and also worked for years in OBGYN. She's always been the one to give the care to others. What goes around, comes back around.Wow. Thank you all so very much. I am speechless (& that's unusual for me!;))
Your understanding, wisdom, genuineness & caring support have overwhelmed me. What amazing responses to receive. I truly don't know what to say (I keep typing sentences & then deleting them!!)
Maria, you are a gem. What strength. Your story brought tears to my eyes. I try to not dismiss my feelings as I know that that only leads to a big explosion when they finally do come out.
Marg, the winter is particularly harsh. Right now I believe it's 9 degrees outside…no fun! It makes it harder to enjoy life, and it makes my guy hurt even more. There's a website called accuweather.com that has an index for the pain level of arthritis (it factors in all weather conditions that contribute to arthritis pain like pressure, humidity, temp) and I find that it's pretty accurate. We've had some particularly nasty weather over the last 2 weeks & when it said that the index was extreme…well, let's just say, it wasn't wrong!
I need to take heed to what several of you said & make sure that I take time for myself. Perhaps joining some kind of club-like thing would be refreshing. Today, I am going to make sure that I get into the studio & do some creative work.
Michele, although I do not subscribe to any particular religion…your words did not fall on deaf ears. I certainly am not offended by faith. Thank you for sharing how you cope. I particularly liked #7 & 10! 🙂 I am working on being able to ask for help.
Lynnie, thank you for the links. I've read half & am going back to finish the rest. You are so thoughtful in providing these links.
Maz….you must have one big hammer, because I have no idea how it is possible for you to hit so many nails on the head at one time!!!!! I will look into the gallbladder issue asap. I know there are so many other trails to follow with regards to my husband's health (all that you mentioned are issues that I believe he needs to pursue). But, I know that he's not up to it yet. I do hope that you're right & that as he feels a little better, he'll be able & willing to pursue the next thing. That seems to be how it's gone so far. I believe we're on the right path finally. I truly appreciate your candor in sharing your personal experiences with your husband.Thank you everyone. I don't believe that I can say or feel that I'm alone any longer. You all are super duper. Now, I'm going to go do something for myself & hope that you all take a little time this Sunday & follow suit…we all deserve it!!! :blush:
Dear mj47 and all who replied to you,
So often we get caught up in a stressful situation and feel terrible, sometimes because we are chronically ill or because our spouse or other family members are. Stress in our lives is much more devastating that we may realize. It actually has a pronounced physical effect, and even robs us of nutrients that can cause further physical as well as mental effects.
We are all different, but I find if I listen to something soothing & beautiful, it can have a profound effect in changing how I feel — can make me feel better, more hopeful, renew my faith that things can & will get better, that I am not alone. This is one of my favorite songs, and I want to share the words with all of you. Wish I had a link that could play the music for you. AF
[align=center]
On Eagles Wings
by Michael Joncas[align=center]Refrain:
And he will lift you up on eagle's wings,
Bear you on the breath of dawn,
Make you to shine like the sun,
And hold you in the palm of his hand.[/align][align=center]Verse 1:
You who dwell in the shelter of the Lord,
Who abide in his shadow for life,
Say to the Lord: “My refuge,
My rock in whom I trust!”
Refrain[/align][align=center]Verse 2:
The snare of the fowler will never capture you,
And famine will bring you no fear;
Under his wings your refuge,
His faithfulness your shield.
Refrain[/align][align=center]Verse 3:
You need not fear the terror of the night,
Nor the arrow that flies by day;
Though thousands fall about you,
Near you it shall not come.
Refrain[/align][align=center]Verse 4:
For to his angels he's given a command
To guard you in all of your ways;
Upon their hands they will bear you up,
Lest you dash your foot against a stone.
Refrain[/align][align=center]
[/align][align=center]This page is part of the
HeavenlyHarpist websiteHome Page | Hymns for Healing CD
[/align]
[/align]
[user=28]A Friend[/user] wrote:
[align=center]
On Eagles Wings
by Michael Joncas
[/align]I love this song!!!
Trudi
Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
Well what a morning reading all this. I read it to my hubby Joe, because I know how hard it is for him too. Because we are just the same, I get so frustrated with him, I even hate him, and when I annalize it all I realise It's me I hate. I hate it that he has to do everything, cooking, cleaning, getting me bathed, dressed and everything else every single day. I hate that I can't do it. I like things done well and that's difficult for us. We are always yelling at each other and he doesn't shut up and let me tell him because he sees it has being told off as if he's not doing things right and that upsets him. Although I get angry and i'm a horrible person, I know really that I have the best man in my life. He may not do things in my perfect way, but he loves me, he makes me cups of tea all day, he make good wholesome food and fantastic soups (he's had a good teacher LOL)
I'm very grateful MJ that you wrote just how you felt, you Did us all good, and a great start to our new year. I'm glad I could read it to Joe so he realises he's not alone going through this.
Thank you
love
Rosemary XX
Rosemary,
God Bless you Dear One,
Thank you, andall of you who have shared your true emotions. We all keep things bottled up inside,because we think, “WE ARE THE ONLY ONE”, who could feel this way, when in fact the opposit is really true. We are “ALL” just “PEOPLE”, who are trying to get through each day the best way we can. I am so thankful for The Road Back site, and all of you, MY FRIENDS, and even though we may never meet in person, I love and have respect and compassion for all of you. Thanks to a special caregiver MJ, who started this discussion.
Love to all,
Judy
Rosey UK,
(With tongue in cheek:) I identify with you, in my perfectionism about how I want things to be and to be done; and for so long was able to do “all of it”! I also identify with you in having a good husband (thank goodness!).
With my appointment in Ida Grove in January 1997 (now 13 years ago), there were forecasts of a blizzard from the east and one also from the west in areas where we would be making that long drive from Texas to Ida Grove. I told him we should cancel my appointment and reschedule. He said no, that we were going; that we'd gone skiing in that kind of weather, and we were going to Ida Grove!
He, too, had read Dr. Brown's book right after I found it (found the same day my internist called me saying my dx per lab test was RA).
Throughout our marriage, I've discouraged him from doing anything in the kitchen, though. He's like a “bull in a china closet.” And I wouldn't want to eat his cooking, though he warms up a good can of Campbell's soup. But, Rosey, I can promise you, you've got a thoughtful JEWEL of a husband.
Let's both of us pray that we can quell those perfectionistic tendencies (though I'm not sure I'll ever change wanting things adjusted. (Again, tongue in cheek:) Maybe it's our artistic eye that sees things as we'd like them to be.
Anyway, again, your husband sounds like one of God's Earth Angels to me. He must love you very, very much, and he sounds very devoted to you. When our end comes, the things that have bothered us won't matter all that much, but the love we've shared (I keep reminding myself) certainly will be missed.
AF
Hi MJ;
Slow but sure Lynne finally gets around to reading a few posts.Kid,you have be bawling my eyes out .I am sure that most of us here have gone through something similar at some point,I know I have.I will leave those that have a better commands of English to give you all the technical things you have to learn.
I took care of my mom for years as she had Altzheimer's and there were times that I thought I just could not go on anymore.Dad would sit me on his lap ,rock me and call me “baby” as if it was 5 years old instead of 55.We would both have a good cry but then feel so much better after.Today they are both dead but I can still smell my dad's sweaters or pipe in my mind.
I just wish I could hold you and say that everything will work outright so just pretend that I am in that rocking chair with you on my lap,stroking your hair and giving you peace for a few minutes.I have not read the other replys but I am sure that the whole gang here feels the same way.I know that without them I would not be here today.
Lynne XXXXXXXXXXX…it's athe French thing to do[user=31]Lynne G./SD[/user] wrote:
XXXXXXXXXXX…it's athe French thing to do
Hi Lynne–
Everytime you mention kissing and the French I have to smile. My son-in-law is French and his parents flew in for all the festivities. Yes, the French do like to kiss–especially in greeting and farewell–on either cheeck and sometimes four times!! I love it!!
This has been a wonderful thread posted by special people. I come here everyday for the comfort and knowledge you all bring. Thank you.
Take care,
Trudi
Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
Oh Rosemary & Lynne…
You have brought tears to my eyes today! But, they're not sad tears.
I truly didn't think that my post would bring so many incredible responses.
Thank you for sharing your feelings & experiences with me…with everyone!
I will call on your words when I am feeling down. I will think of you both…in fact, I will think of all of you who've responded so candidly, when times are tough. And, when times are good…I will still think of you all. You've no idea the tremendous change you're creating in my attitude. Never before have I felt such support coming from complete & total strangers…but you're all friends in my eyes now. Thank you, thank you…a million times THANK YOU!!!!!!
Lynne, XXXX to you! 😀Hi Judy,
You know I cryed at your post as well as MJ's this morning. When I saw you with your lovely children. I was so upset knowing how difficult it gets, and I can see you are a lovely Mum and a very special person. And the children are very lucky to have you as their Mum.
hugs and love to you all
Rosemary XXX
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