Looking for support from fellow caregivers

[mj47]

Hello everyone.
I must say that yes, I am eternally grateful for this forum.  Thank you to every single person who posts.  It helps me to see that my husband isn't the only person in the world going through the pain, anger & frustration that these conditions bring.

But, I admit that I feel like I am wearing thin.  I want nothing but the best for him.  I try so hard to be strong for him.  We run a business together, so we spend 100% of our time together.  From what I hear, most people wouldn't be able to handle that, even if they're totally healthy.  😉  Throw into the mix a whole lot of tears, anger, pain & frustration and wham!  recipe for disaster.  It's devastating to me to hear that he can't handle it anymore….that God must hate him.  The last few days have been emotionally draining.  I know that it's worse on him…he's the one that has to go through it.  I get that.  But, when I see him getting soo down, it reminds me of how hard the last few years have been, how difficult it is to run our business (especially during these economic times), how we may need to start completely new careers & that neither of us has any idea whatsoever of what we could possibly to for a new career especially when we can barely keep up with what's already on our plate….then I go on a downward spiral.  But, I'm not allowed to!  If he sees that I'm down, he tells me I'm mimicking him & that it hurts him & makes everything more difficult.  Boy, oh boy does that feed my bad feelings.

How do all of you others out there who come to this board in search of answers for your loved ones do it?  How do you keep it up?  I believe that I am a strong woman.  But, lately I feel like I want to crawl into a hole & sleep forever.  I feel guilty just posting this because I know so many of you are dealing with equal or even more difficult situations…but, I am reaching out because I don't have anyone else to reach out to.  Most of our friends have bailed out because they just don't understand why we can't do the things they ask us to.  And, I feel like I don't have anything positive to say to anyone anymore.  My family is supportive, but I feel like they don't get it either.  And, I hate to go on & on about how hard life is.  I realize that I'm perfectly healthy, so I shouldn't be complaining so much.  But, I think I'm in a depression that I'm having a hard time shaking.

Thanks for letting me vent. 

[judy cash]

mj47,

Funny how things work, because I feel everything that you are feeling pain, anger, feelings of despair,feeling traped, the depression, no where to turn to,  no friends or family that understand, unsure of the future, worry about the kids, worry about myself, my husband, no one to talk to  because everyone has stopped asking, or has even forgotten about the illness, as if it just goes away one day…..The holidays have been tough for me this year, I'm sure they have for you too. You may be surprised when I say this, but I am the one in this situation , the one with the disease (RA). And you can't believe how I despair over what my husband and 10, and 12 year olds have gone  through, because of my illness. . I am the “mommy”, you know the one who is supposed to keep my family going. 

 Please don't take this post the wrong way. I cryed when I read how you feel, it makes me realize why my husband is grumpy, and down a lot. This is not the way any of us thought our lives would turn out. It's heartbreaking when you think of our spouses, how they feel left out, when people ask , etc. I feel left out of life sometimes too.It's hard!!!!!! I guess we all just have to find a little more patience, with each other. This site is for everyone, including spouses, I'm glad that you posted and I'm sure others will respond. I just wanted you to know that everything that you feel , your husband probally feels also. Love to you .

Judy

[lmartin]

I'm so sorry to hear that both you and your husband are in a bad place right now.  But this is a great place to vent as you're definitely not alone!  My 16 year old daughter also has PSA but since she's young and it hasn't affected too many joints, she's not in much physical pain right now.  However, she's in a lot of emotional pain.  She may have other issues (like a perfectionist personality which doesn't make you too happy as no one is perfect) but the other night she was in tears, crying that she's a loser.  It made me cry because nothing could be further from the truth!  She's such a wonderful young lady, so I started thinking that maybe this is part of the disease, the depression that they talk about.  So there's not just the physical aspect of this disease but emotional as well and together, can make for a very rough road.  I too wondered why God let this happen to my daughter, she's a very good kid, she definitely doesn't deserve anything like this.  Then I remember what someone said on TV – God never said it was going to be easy, but He did say He would be there for us.  Although sometimes I do feel alone, I know God is there.  They say things happen for a reason.  I wish I knew the reason!  But in the meantime, I will continue to pray and lean on friends and family.  And of course, this posting board!

I truly hope that you and your husband find some peace.  And keep venting if you need to!

[judy cash]

Oh my goodness, my post sounded terrible, I'm sorry.  Here you were looking for support and BAM, I feel like I cut you down. I did not mean for it to sound that way at all.  My point was that…..everything that you feel, I feel too, so you are not alone. I do understand even if we are on opposite sides of the fence. I'm sorry for what you are going through, you are not alone……..

Judy

[Maz]

Hi MJ,

I'm going only by memory here, but your hubby has been on mino for just a little over 2 months now? I also noted in your sig line that he reduced his pred quite quickly at the end of Oct/early Nov. How is he doing with that? Any recent changes lately, apart from added work and Christmas stress?

I wonder if the two things above may be involved for many of us at this time of year…you know, the fallout from trying to keep up, the financial burdens of the season, rushing around and dietary changes, etc.

I'm sure the other caregivers who post here can share their journeys with you…you're all amazingly strong and courageous as these diseases are not easy for anyone involved. All I can share is the perspective of the patient and I'm sure you get that every day anyway. If this helps, though…you're hubby is still the same guy inside. I always tell myself when I've been down that it's just the inflammatory cytokines taking over my brain….literally, they do. Parisa has been on this journey with her hubby for several years now and she's a wealth of info and support to others. You could try PMing her, if she doesn't see this.

If it's any comfort at all, MJ, two months in is still very early days. I worsened significantly in the first few months of AP and after that it has been a slow back and forwards dance all the way. It may even be too early to think about dosage adjustments or adding a second antibiotic.

Hang in there! Your hubby is still your hubby and what comes rolling out of his mouth when he's in pain is not the guy you married…it's fear and powerlessness speaking, that's all. But, he needs to know that you are entitled to your meltdowns, too, when you need them. 😉

Sending hugs of support your way and sure other caregivers will come along to help with some tips for getting through the rougher times.

Peace, Maz

 

 

[mj47]

Oh Judy, please do not apologize.  Your post did not sound terrible to me.  I already knew that you are the one suffering….before you stated it.  In a way, what you said is a good reminder to me that my husband is trying so hard to deal, to cope.  Man, do I know what you mean about people not asking anymore, or seeming to forget what's going on…like the problem just went away *poof* like that.  We've experienced that numerous times with both friends & family.
I feel like I should apologize too…I knew that people who are trying to deal with difficult pain would read my post….and the LAST thing in the world I want to do is make people cry!!!  You must know that your family loves you &  only wants the best for you.  But, honestly…I'm happy that you wrote to me.  I felt the love you sent & it fortified me.  I appreciate that even though you are suffering like my husband, you welcomed me with open arms.  I agree, patience is a virtue.  And when I'm running out of it, I am so relieved that I can come here.  Thank you & love to you.

[mj47]

lmartin,

I've been watching your threads & I feel for you tremendously.  Your daughter is a trooper.  I know how devastating it can be to watch your loved one go through this.  I can't imagine how you, as a parent, can deal with the meltdowns of “why” & “i'm a loser”…I've been there with my husband innumerable times & I know (like you do of your daughter) that he's an awesome guy…talented, loyal, loving…the list goes on.  It's hard to convince someone otherwise sometimes, especially when they are in the throes of depression.  And, yes, I do believe that it's the illness that causes this.  When he feels ok, he's driven & curious.  When he starts feeling bad, all that goes out the window & it's a minute by minute thing.  So, I understand your pain.  But, you & your daughter are lucky that you've started on the AP path & so quickly too!  Hopefully all the research & proactive moves on your part will spare her of joint progression…you know that catching it early is a very promising thing! 
I am happy to have another person dealing with PSA here too…please feel free to keep in touch.  We all have a lot to learn & a lot to teach.
Best to you.

[lmartin]

mj47,

It is so hard to convince people of their own worth sometimes!  You can easily see it, why can't they?  But we'll just keep on trying!  We love them too much not to.  Thank you so much for your words of support.  Best wishes for health to both your husband and my daughter.  And for everyone!  This can be a long, slow road but AP certainly does give you hope.

Linda

[mj47]

Hi Maz.
Thanks for your post.  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  (your memory is pretty spot on girl!).  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.  He had somehow stopped taking his milk thistle & I made him start up again about the same time as the DGL.  It seems to help…it's much less often that he has the pain in his side.  All the stomach burning made him look into what could be causing it & he decided that it was the pred & that he really wanted to get off of it.  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.  Totally uncontrollable.  He took amino acids to balance his serotonin & norepiphenephrin (sp?) as per a DO that he was seeing.  They seemed to make him worse, but he stuck it out.  Eventually, he just couldn't continue & then things seemed to even out.  We suspect that they did eventually help him. 
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.  He's upset that he stayed on it longer than his rheumy wanted him to (he said about 5-6 weeks & it's been over 3 mos now) & really wants to get off of it.  He has experienced a worsening of his pain…mostly in his back, ankles & toes.  But, he is nowhere near as bad as he was before he began the pred & then the mino.  Plus, some things that were bad before any treatment & some that got worse when he began mino have gotten better & stayed better, like his neck & his jaw & right shoulder.  YAY for mini victories, yes??

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.  So, this whole weekend he can't see his dentist…not until Monday.  There's not a huge amount of pain, but he's very uncomfortable.
That's all I can think of as far as any big changes for him. 

I'm hoping he'll get this tooth problem taken care of & that he'll feel a lot better. 
Thank you so much for the concern & support Maz.  You're swell.:D

[heatherbell]

There is no need to apologise, ever.  You have reminded me to keep in check my shortness and sometimes nastiness (pred effect) with my family when I'm in pain.  You are a timely reminder that these insipid diseases also affect our loved ones.   Us pain sufferers are not the only ones suffering.  Thank God for this forum to get things of your chest.:crying:

 

 

 

 

 

 

 

 

 

 

 

 

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[mschmidt]

Mj,

Please don't ever apologize for your feelings–I can't even imagine what you go through each day.  I'm the sick one but, I sometimes forget that this disease has affected every single person close to me–especially my husband.  I got SD less than a year after we got married.  Although we've been together for 8 years, getting sick so quickly was devastating to him because he knew the independent, active, vibrant, fun, outgoing, carefree woman I was for 5 years.  It's hard to be sick but I often think that it's harder to be the caretaker.  I've always been good at not burdening anyone with my problems, and found that I was trying to be “normal” for everyone around me.  What I didn't realize was how bad of a poker face I had because those closest to me could see my pain, and it was heartbreaking to them.  I remember my mom coming to visit me last summer, and having to hold me down at the hospital when they did a bone marrow aspiration on me.  I was SO sick, so weak, and had such severe muscle wasting that I looked like a 14 year old girl, not a 38 year old woman.  We found ourselves sobbing in each other's arms, not knowing what was going to happen to me.  My mom was always the strong one in the family so, to see her fall apart like that was terrible for me.  I was in pain but my God, I can't even fathom what that must have felt like for my mom to see me so sick.

My husband was in denial about how seriously ill I was, and I can't blame him–I've been so strong through everything, and never asked him for any help.  I remember the day he had to carry me out of bed to the bathroom because I didn't think I'd make it there in time.  Mind you, I'm talking about the master bath–a mere 10 feet from the bed.  It was the most humiliating moment for me, and I looked up and saw his eyes well up with tears.  Again, I was hurting but, I can't even imagine how my husband must have felt. 

You are entitled to feel all the same emotions as your husband.  It's ok to be angry, sad, hurt, and even resentful for all that is going on.  It's actually more healthy to feel all of it, then to dismiss it or shove it deep down inside of you.  Life is funny, cruel and challenging…there are no guarantees about anything, other than the fact that ALL of us will leave this earth in time.  The only control you have in this life is how you handle the deck of cards life throws your way.  From what I can see, you are an amazingly strong, compassionate woman who is desperately trying to comfort the love of your life.  How wonderful that is, and how difficult it must be to be in your shoes.  Just know that no matter what, you are always do everything you can to survive all of this.  What you've made me realize is that it's not easy to watch a loved one be sick…and even harder to have to deal with everything that entails.  Just take life day by day, don't beat yourself up for how you feel, and know that even though your husband may not tell you how much he appreciates everything you do, he DOES…and it's probably giving him all the strength he needs to get through this difficult time. 

God bless you and your husband with health and happiness.

Maria

[marg]

HI mj, it's so good you talk to the others on this board. They know you are having a really hard time and no one thinks you're just complaining. You're walking a hard road.

I don't know where you are in the U.S. but if it's winter where you are the lack of sun doesn't help- I'm convinced of that!

Is it possible at all for you to do something on your own each week for a few hours? Something where you get out and have a nice time? Can you join a book club or go swimming at a community pool or take a craft  course or …This could be with new people who don't know your situation and you can explain as much or as little as you like. Truly, this could give you more of a break than it sounds like.

Never feel selfish for looking after yourself. Where would your husband be if you were not OK? These illnesses affect the whole family. Depression is very real and very debilitating. Do what you need to , to keep yourself on track.

[mkbeeliever]

Woooa, what a topic.  I am so glad you reached out!  It is important.  I am a caregiver to my mom.  I am 43 years old and never married without children.  My dreams for that life have been replaced by a bigger and more important “vocation” of the single life and caring for a sick mom.  I went through a lot of resentment, sadness, why me etc. for a few years but now I seem to be OK with what the Lord has asked me to do.  (I want to warn you, I am very transparent, blunt, and very comfortable with my faith.  I normally talk and write with a very religious tone naturally, so stop reading now if you will be offended in any way by those things. :roll-laugh: I am a devout Catholic and don?t apologize for it.)

My cup gets emptied quite regularly.  I get resentful, I get pissed – but not at her.  At the situation, at the disease, at the injustice of it all.  And if I don?t watch myself, she thinks I get frustrated at her.  It?s so hard.  I have found these things help me a lot with coping:
1.)    I know that the face of my amazing and precious mother is actually the face of Christ. 
2.)    I know that we are called to care for the poor?the definition of poor is not always one without money.  The poor are the sick, the downtrodden, the hopeless, the helpless and the vulnerable.  The people who are poor in spirit?Jesus was born poor.  A poor little helpless baby in a nasty manger.  Our God became just like us, poor.
3.)    I pray a lot.  I am in constant prayer it seems.  We pray as a family.  I go to church.  We bless ourselves with Holy Water from Lourdes every night ? the healing waters of Lourdes, France that we know have helped her heal. 
4.)    I have a great network of friends.  I force myself to talk.  If you don?t, you will withdraw.  I sometimes don?t want to talk.  It exhausts me.  I talk all day long on the phone with my job.
5.)    I try to get out of the house or read and do fun stuff.
6.)    We?ve got tons of people praying for us.
7.)    I allow myself to cry.  I allow myself to vent.  I allow myself to take a Zanex once in a while!
8.)    I always end up seeing someone, hearing something or reading about a situation worse than ours so it puts things into perspective.
9.)    I ask for help.
10.) We laugh like crazy people all the time.  Mom and I are like Lucy and Ethel especially when I am trying to get her in and out of places in the wheel chair.  There are so many times when I am bumping into things or almost flipping her out of the chair.  She takes it in stride and laughs her ass off.  Laughter is the best medicine!
11.)  We are grateful.  We?re always making sure we think of what we are grateful for.  Gratefulness puts things in perspective too.  We reminisce.  We make sure we look at where she was at her worst and now where she?s at and we are grateful.
I hope in some ways these things helped you.  You are in my prayers?everyone on this message board is in my prayers.
Blessings,
Michelle

[Roz]

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

[lynnie_sydney]

mj47 – Coming here to express your feelings was a very smart thing to do. This is a safe and supportive place. Others have given their perspectives and wisdom and I'd like to add a couple of other things that may be of some use to you. David J Levy is a well known speaker and writer on family caregivers. Quite a few of his talks/papers are accessible on the net. This is a link to a presentation he gave at the National Conference for Dysautonomia Research: http://www.ndrf.org/DavidLevyPres.htm. Additionally, the Foundation gives some tips gathered from around the world for caregivers coping with chronic illness: http://www.ndrf.org/Caregiving.htm. Dont feel guilty for coming here and sharing, congratulate yourself for doing so. And do seek some additional help for your depression if you need to, you deserve support for your needs too. Lynnie   

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

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