Hi my fellow Sjs, sorry to jump back in after a long departure whining again. But once again, I've hit a wall big time, and have no clue how to get around it.
My husband hates that I take medicines because the cost of the copays eats up "all" Of his money and he can never get ahead. He has been picking at me on the subject in one for or another for several months, but it's really become hurtful in the past few weeks.
Granted. even the copays can add up when your on every drug known to western man. I just added it all up - my copays for prescriptions alone is $263.89. I've been weening of medrol and only have about a week at 2 mg then it's gone. I also weaned myself of the miripex that I was taking for restless leg syndrome. They haven't bothered me for a while, so I'm going to try to go without.
We have insurance and what would be considered a decent income if we weren't constantly shelling our money for doctors and prescriptions.
I can understand his upset, but it has become terribly personal, I tip toe around the house for fear of setting off his temper. I finally suggested we fix up the house so we can sell it, pay off any debts on it, and walk away from it and each other debt free. He made some comment on how he'd still be on the hook for me in some way, and I assured him I have no intention of asking for alimony. I'm just tired of living this was. We had a couple of really good years when he was on antidpressants and was handling things better, but he decided he didn't need them anymore, so he titrated himself off.
I have an appointment next week with my GP to see if we can't whittle down my drug list a bit more - but in all honestly, I don't think the co pays are the real issue, I think he's just tired of living with someone who he sees a pretty much useless - I can't work and I'm forever having surgeries or procedures. I have a surgery Sept 23 to move my morphine pump, and he's said he will not take the time off to take me to the hospital, be with me during surgery, or bring me home and stay with me afterwards. So my sister is taking me and my son will pick me up when its over and stay the night.
After my surgery, I hope to look for some type of job to bring in some extra money. Have any of you had jobs you could handle with the ups and downs of your Sjs? I'd really like to hear about them. I have a feeling I'll be divorced and on my own be the time out bankrupcy is over in 2 years. He wonders why I'm always sick---lets talk about stress, right!!!
Thanks for listening. I'm feeling very beat up right now - my son did get his orders Sat - he's going to Iraq Now this mess, a great big cocktail with all those drugs he hates so much might be mighty fine right about now. Don't worry, I'm not really thinking about suicide seriously. When that time comes, I won't say anything to anyone, just leave notes of goodbye.
Thanks for listening, Tracy
Hi Tracy, it was so saddening to read your thread tonight. It is awful when the family start nit picking over an illness or complaint such as our's, especially ones husband, mine isin't so bad, but he sure doesen't fully comprehend the frustration of it... I say it time & time again, not even most Doctors realize what we go through with Sjogrens.. Fortunately I am in England so I don't have the worry of paying out huge sums of money for prescriptions, but I do spend quite an amount on other things I need that do connect with this complaint, such as a lot of mouth product's, e.g. sugar free sweets, and gum, loads of moisture creams, etc'.humidifiers, sun specs, oh the list is endless... Can you get your Doctor to talk to Hubby and explain to him of your complaints,have you no other close family that can help and advise you?
I wish I could say something more useful to you , but I'm sure you will get much support from others here.. I sincerely wish you well and will pray for your peace of mind, Best regards Dolly.
Hi Tracy
Now you got me worried. You've been down before - but this post sounds like it's time to talk it through with someone. I can't imagine the situation you're in with your husband blaming you for needing medicines and spending on them. It worries me that you feel you need to wean yourself off some. It sounds to me as though he should be spending on meds for himself too. I can understand why a split sounds like a way to more peace of mind. Walking on eggshells is no fun.
I'm sorry your son has finally got that call up. It's just the last thing you need on top of everything else. When you see your GP I hope you get to voice your worries.
Take care - Scottie :)
Hi Tracy, I do understand what you are going through personally, and also I have a g/friend with SS/Lupus who has similar issues in her marriage. It takes a mature, empathetic spouse to handle living with an unwell partner. You don't have to accept 'crap' behaviour/verbal insults from your husband. I also walked on egg shells, but could give as good as I got, which wasn't a good way to live :(
After many sessions of councilling with my ex-husband, I ended my marriage in 1996 (I asked him to leave). He could never undersatand why I had no energy and was unwell a lot of the time. My girls were 10 and 8. It was the best thing I ever did, but it's not for everyone. Yes I get lonely, but the good times out weigh this. I believe my ex was depressed as well, but would never admit it. He learned about depression 6 months after we parted company.
I agree with Scottie, it's time to talk to someone else and your Dr is a great starting point. Could you get your husband into some councilling sessions? When you're going through these personal issues, it seems that everyone elses family has got it together but that's not the case. There are many here who have been where you are at present. Please keep us posted.
Take care, Lesley (NZ)
Hi and thanks so much to those who replied,
I am seeing my therapist Thursday. He knows that I feel that someday my back, this disease or my husband (or the combination there of) but most likely PAIN will cause me to take my life. I've been in pain for17 years, 2 months (I don't count the days). The every day, no real relief pain is a real bugger. He just tries to help me make the most of every day that I'm here.
I saw my family doctor today. I tool my most current list of meds and told her that my husband wants me to go off some, if not all, of the meds to save money on our co-pays, which gets pretty high each month.
Her first response? "He's gone off HIS meds, hasn't he?"
She offered to call him and have a discussion about my health and the need for the medications I'm on and that to stop them to save some money would create a whole new realm of problems. Since he already thinks I conned her into prescribing anti depressants to begin with, I said it would be best is she just spoke with him the next time he comes in.
It helps alot to have her on my side. Now I have to get hold of my rheumatologist to get answers to a few questions, but he seems to have gone missing.
Thanks again for your support. I am trying to make the best I can of each day. I think things will be better after my morphine pump is put back where it belongs and I can sit comfortably again.
Tracy
Tracy, You are between a rock and a hard place. I feel badly that you are in a position to be so "low" about life. As I read your last post the first thing I thought of was that you have all the pain, but yet the thing that you seem to post about the most is the constant stress and upset concerning your hubby.
I don't presume to tell anyone what to do---at least specifically what to do--but have you ever taken some time away from your hubby now that the kids are gone. It might give you a new lease on life. You might be surprised to find that your ability to deal with pain will improve or the pain itself will not be as bad. Remember that when we are under constant stress our body has a way of telling us. Because of your back issues I would presume that stress has a good place to lay down and raise havoc in the pain department.
I have no idea what I should even be saying, but it seems to me that you have invested too much time and energy in trying to keep your body healthy to give up in the latter years of your journey. Your kids are grown, you had a good idea about the house and selling etc. Maybe it is your hubby who can't part with you. He may need you to give him something to complain about. My guess is that if it wasn't your co-pays, he would find something else to complain about.
Hang in there, talk with professionals such as minister etc. You sound like you need someone to help you find your way. Maybe if you could do some volunteer work you would find someone or something that would strike a chord that would jump start your plans for the future. Please try to think beyond suicide as it doesn't solve problems. Think of your boys. They will always need you in the way that grown kids need a mom---especially when they are married and the babies come. Double Hugs Irish ;D
Tracy dear, I wish I knew what to say to you that would give you some comfort. But the thing of it is, I don't. I feel so very bad for you, and so angry that you have to go through all of this. And now to add to the stress your son has been deployed.
I know the stress of the medication costs, I know how I stretch my prescriptions to save. Some of them you just can't stop or stretch because the alternative is to much pain. I wish we had insurance that allowed us to pay a co-pay, but right now it's pay all or get no meds.
About the only thing I can do for you is to keep you in my prayers and your son also. Please let us know how you are doing. We all care very much about you.
Hugs, and God Bless,
Pooh
Tracy honey,
I'm sorry you are in such pain both physical and otherwise. I can't offer any great words of advice or wisdom but i will add yu to my thoughts and prayers and hope that things improve or you soon
Pud
Tracy,
I am truely sorry you are in that situation! I wish I had some advice (or a wand) to help. But all I can offer is a listening ear and hugs! Ill keep you in my thoughts and prayers.
Barbara
aka
Solmom
Barbara,
Sorry to hear of you situation. I am a spouse of a sjogren's sufferer. Not only does this crazy disease affect the person with it, it also affects there spouse and families. Most of us spouses are men and at times we're as thick as a brick! If the spouses had a place to vent to other it might help.
I feel it's my responsibility to take care of my wife and I will, not because of my responsibility but because I love her. I pray that you husband would seek some help to cope with this and maybe be willing to go back on the anti-depressants. This topic has been addressed on this forum before. Maybe the administrators might have a suggestion on where and how you could seek help in this situation. You and your husband will be in my prayers.
God's blessings,
Mark....
Tracy, I'm so sorry to hear that you're suffering thru such a difficult time right now :( I really wish I could give you a gaggle of hugs. As others have mentioned, I sincerely wish that I could do or say something to help alleviate your pain, but as I cannot, I too will offer up my support & prayers for you & yours.
Please, please, do not let your husband's lack of a better method of dealing w/things, wear you down! As you already know, its not your fault that you're sick. For the sake of yourself & your boys, please focus on yourself...You deserve so much better than this!
May you find more comforting times, in the days ahead.
(http://www.freesmileys.org/smileys/hug011.gif) (http://www.freesmileys.org)
Tracy, I'm so glad you have taken the first steps and spoken to your Doctor about all your problems at home. You still have a long way to go by the sounds of it, but keep at it brave girl. I so wish your pain would ease and pray that it won't be too long before things go your way.. We all rootin for ya.... Big Hugs, Dolly
Tracy I am so so sorry to hear of all you are going through. I said a prayer for you, your husband, and son. You see I have been there. I was married to my first husband 27 years. He didn't like it when I was sick and had to pay out more for medical bills. At the time, I wasnt working as a teacher that I am now. I also have one son who is now in his 30's and means so much to me. My ex husband loved his money. Because I wasnt working at the time he did consider it is. I remember one time I was hurting in my chest when I breathed. He said, you run to the doctor so much, why dont you tough it out like me? Well, that hurt so much I didnt go to the doctor. I kept trying to take vitamins. Then the pain kept on so I went to the doctor, and had pleursy, and the doctor ask why I waited so long. I was brought up to not even believe in divorce. I got so depressed until I ended up very clinically depressed and suicidal. I don't think I wanted to die as much as I just wanted to not hurt anymore, and feel so bad about me. I had never seen my father treat my mother this way. I was in therapy a long time. No doubt I had all the early signs too of sjogrens, but didnt have a clue then. All I know is one day, I couldnt stand it anymore, and just wanted to know what it would be like to be treated nice by someone. My then therapist helped me a lot with feeling more confident, and I went back to school. I remember my husband saying he would not help me with anything to do with going back to school. I got loans. I struggled but made it. After a few pay checks of my own as a teacher he told me where my money needed to go , and how much I could have on me. This didnt last long. I left, later met my present husband, who has medical problems too, and we are so much alike. We are supportive of each other. I am the only one working now, because my husband is disabled. My time working may be limited, but all in all I am poorer than when married to my first husband, but I am one happy lady. August 29, we celebrated our 10th anniversary. If I didnt live another day, I will have at least known what happiness is. I say all this with my own story to say, I understand somewhat of what you are going through. I cant tell anyone else what to do , but nothing stays the same forever so please hang in there. My son use to say, Mom we stick around to see what is going to happen next. But remember you first have to stick around.
susanep :)
Hi Tracy, I understand about the co-pays. I virtually have no income at the moment and I'm drowning in co-pays. I'm still waiting to hear a disability decision but I'm basically living off a small 401K that I've cashed in. I don't even want to think about the penalties at tax time.
Steve
Susan, thanks for sharing that story. I'm so glad you were able to move on with a teaching career (I do part time teaching) and to find a supportive partner :) My ex wasn't at all stingy with money (he was the reverse... a spend thrift) As time went on and he became more stressed, he became verbally abusive and unsupportive and lazy. I didn't want my girls growing up with that example of a man so I asked for a divorce. Once he was living by himself, my ex became a much better dad and has supported them in a number of ways.
Both my girls are adults now and have chosen lovely men as partners. These guys put my daughters first, before themselves, are supportive and caring. I also know that my daughters wouldn't allow a man to treat them disrespectfully.
Lesley (NZ)
Tracy, Many hugs and prayers being sent your way.
Take care,
Vicky
PS. Irish made a good point in her post.