PDA

View Full Version : frustrated, just need to vent



scubagramplit
12-01-2009, 11:00 AM
My dr. has been tapering down on my prednisone, it started at 40mg a day and he took me down to 20mg fairly rapidly without any problems and left me there for a short while and then started again by dropping me down to 17.5 for two weeks and then to 15 for 2 weeks, which at 15mg I was doing fairly well but I did notice that my energy level was going down and I was feeling much tireder( don't know if this is a real word or not but being I have used it in a sentence it is now) in the morning, it had been slowly feeling this tiredness as the taper from 20mg was taking place, right now I am on 14mg for the last week and a half and have been feeling more fatiqued, most of Thanksgiving was spent laying on the couch and not doing much at all. The frustrating part is my wife who has been so supporting this whole time now all of a sudden when I mention that I feel tired and fatiqued is telling me that it is all in my head and that I am convinsing myself that I should feel tired because of the taper. I told her this morning that I should have her tell me how I am feeling from now on, I have notice also with the taper my irritability has come back, just really short. I am thinking that the dr. is going to eventually put me on methotrexate which my wife is totaly against, all of a sudden I am supposed to be drug free and convince myself that nothing is wrong and I have all kinds of energy. I guess the old saying is true even to family members, if you don't have lupus you just don't get it. I am the sole provider for my family and since this awfull disease entered my life I saw my career come to an end as a lineman, by God's graciousness I was employed at a lineman college, which I enjoy, now I am woried that if I cannot make it to work, such as today, I could lose this job. that obviously produces other worries that I do not need to think about yet. My appologies for the rambling, as I said I just needed to vent.

Saysusie
12-01-2009, 11:35 AM
I am so sorry to hear that your wife's misunderstanding about this disease is starting to present a problem. I think that I mentioned to you, in another post, that what is happening, while you are tapering, is not uncommon. Both symptoms (fatigue & irritability) sometimes re-surface when tapering Prednisone. It is exactly for this reason that doctors will order a drug like Methotrexate so that the Prednisone dose can remain small, but the symptoms are still controlled by the other drug.
Your fatigue is NOT in your head. It is a very real symptom of Lupus and it happens to be one of the symptoms that Prednisone helps. So, naturally, when Prednisone is reduced, the symptom will often reappear. Not to mention that being extremely fatigued, by itself, is enough to make a person irritable!

The most important thing that your wife needs to know is that: THERE IS NO CURE FOR LUPUS..IT DOES NOT GO AWAY...WE ARE ONLY ABLE TO CONTROL/MANAGE OUR SYMPTOMS WITH MEDICATION AND LIFESTYLE CHANGES! Sometimes, the meds and lifestyle changes can control our symptoms to the point of remission. Remission does not mean that you are free of the disease, it merely means that the disease is inactive and/or the disease can be controlled without a lot of meds. But, if meds are reduced or not taken, all of those symptoms can & will rear their ugly heads again!

Please know that Methotrexate is a medication used for cancer. When used for Lupus, the dose is much, much smaller. However, that does not prevent many from having 1-2 very sick days after taking it. Many have to take to their beds on the day that they take Methotrexate (it is usually taken only one day per week). There are other immunosuppressant drugs that can be used, but Methotrexate has had the biggest success with Lupus.

I do hope that you are able to find a combination of medications that will allow you to maintain your job and that will alleviate some of your fatigue. Know that we are here for you!

Peace and Blessings
Namaste
Saysusie

scubagramplit
12-01-2009, 11:47 AM
Thank you susie for the understanding and compassion, it certainly helps to know that I havn't completely lost my mind.

magistramarla
12-01-2009, 01:30 PM
I agree with SaySusie, the fatigue is not all in your head.
I'm taking methotrexate, and it's not so bad. I can't take steroids at all because I have avascular necrosis. For me, the combination of MTX, Plaquenil and mega-doses of vitamin D has been a success. It has done a lot for the fatigue and rashes. I have the injection on Sunday evening, and I usually feel a bit queasy and draggy until mid-afternoon on Monday. For the rest of the week, I feel pretty darned good.
Now if my knees and hips would just move better, I'd be almost back to normal.
Check out the thread called "It's M day" (in Lupus Medications Forum) to get a lot more feedback on MTX.
Hugs,
Marla

scubagramplit
12-01-2009, 02:46 PM
Thanks Marla, I did read through a couple threads on the big M. I am not looking forward to the ill side effects however it would be worth it get rid of this fatique.

debbie-b
12-01-2009, 02:53 PM
Thank you susie for the understanding and compassion, it certainly helps to know that I havn't completely lost my mind.

You have not lost your mind. We all go through this, you feel good for a little while and then bamm, out of no where, it hits you again.
I have said this before, my husband is loving and helpful, that is for sure, but does he fully understand, NO, but how could he, we have a hard time understanding this nasty illness.
For your well being, you have to do what is right for you and work with your doctor. Hopefully he can figure out the right treatment for you.

Debbie

Angel Oliver
12-01-2009, 06:01 PM
Oh im sorry to hear about this,but you need to explain again and make your wife hear you.You know we understand you,but sometimes our family just dont get it, mine doesnt! Goodluck,keep strong and let us know how you get on.I understand also the worries on top of all this with work and money,but just take it one day at a time and keep posting to us.xxxx

Lots of love
Amanda.xxxx

pandagirl
12-01-2009, 06:44 PM
After reading your post I really thought about how my husband must feel...he doesn't get it for sure..he tries to be patient..I think a big part of the spouse issue is denial..they don't want to believe it in a sense because it scares them and they can't or don't really even know it themselves. Unfortunately, my 23 year old daughter is now symptomatic too.so at least in addtion to you all..I have her who does get it because she has the symptoms as well. Another issue is when you look healthy..people really don't think you are feeling ill..I get that alll the time..."but you look good"..yeah well I feel like ***t..hang in there Scuba..stress is the last thing you need. I would try talking about it to "clarify" some things for her. Be well...

sick n tired
12-01-2009, 07:09 PM
Hey just adding my voice to the others...I have done the tapering off Prednisone and it sure isn't fun...the fatigue is real...Your wife might have been wishing or hoping that because the doc was taking you off Prednisone, you were getting better or perhaps well...Like Saysusie says, there is not cure as of yet....I am praying that you will be able to handle the taper off better...so what does your doctor say about the extreme fatigue?

abbasgirl
12-02-2009, 09:13 AM
I haven't heard it yet, but I've seen "the look" on hubby's face when something didn't work and he was disappointed. I know he was thinking it but glad he didn't say it. Still though...it was far from supportive. He's passive aggressive...he finds other ways of expressing how he feels. Thankfully it's something he's aware of and working on.

My pcp gave him some advice at one appt...and shared how it is for people with AI diseases... she explained this could take a while to get control of and we can only slow this down, not cure it. She did me a big favor! He didn't like hearing any of that but in time he's come to terms with it. He's read a few posts here and that helped too. This AI thing scares him really bad at times and he's having to learn to cope with this same as me...only, I'm the one with the physical challenges with it. So I cut him some slack.

Maybe your doc could explain it to your wife?

scubagramplit
12-02-2009, 11:24 AM
Thank you all for the support and advice. Cindy and I talked this morning and cleared things up. She told me she got on whl last night and responded to some of the posts, I don't know which ones, however she said in reading some of these that it sounds like it is us against them, I explained to her that is just what it feels like a lot of the time, I think reading them has opened her eyes a little. Any way that chat relieved me of that small amount of stress, still flaring though, fatique,soar achy muscles and joints, concentration is a bit off. yeehaa:(

DrinkofWtr
12-02-2009, 11:55 AM
I am so sorry that your wife is so not understanding. It is so hard to deal with this illness. People don't even believe we are sick and think all kinds of unkind things about us. Sorry all this is happening to you. Just deal with it the best you can.

Druid
12-09-2009, 03:43 PM
As a spouse of someone who has SLE/RA/AI I can attest that it takes time to comprehend and understand what these diseases are. What they mean. How they are going to impact your lives. And then accept and learn how to deal with it.

My spouse was perfectly normal. We had an active fun, rich life. Slowly things went medically wrong. You have to stand back and watch it in order to see the trend.

Then came the visit to the ER followed by a series of horrid mis-diagnoses.

Several months later came the first generally correct diagnosis of SLE. Followed by RA. Followed by AI.

Between the first visit to the ER, first of many now, and the diagnosis I watched my spouse sleep. Being exhausted. Being not on the ball. Having their libido, which had dropped slowly and surely over the previous years, absolutely disappear. (Yes, I have needs too.)

Trust me, I get it!

All of this does not mean that it's easy to deal with being the partner of someone diagnosed with this disease. In fact, it's a royal pain.

Sometimes I just want to scream, cry or throw a tantrum. :hissyfit: Or just simply give my spouse a gentle hug and have them NOT pull away, cringing in pain. It's hard not to take that personally. And most of the time I don't. But it's hard on everybody. Spouses, children, friends, family, parents and so on.

The worst part as the spouse, is that there's nearly nothing that you can do.
You can listen. TRY to understand it all. Be attentive. It all feels so ... so utterly inadequate.

And in trying to take care of their needs, I am finding that my own are utterly unmet. And I am not a particularly needy person. I feel utterly guilty when my spouses friends come over and give me a hug and I melt into it.
My knees literally feel weak. Not from desire for them. Just for a simple need being met.

So please understand, it takes some time to adjust. And even then it feels like there's nothing that we, the spouse of the affected, can do. We just try.

And when the next wave of bad news comes in, please understand that it hurts us too. We won't always react in just the right way.

SLE and it's brethren wreak havoc on families, not individuals.

signed,
a lupus spouse

magistramarla
12-10-2009, 08:44 PM
Oh, Druid,
As I read your post, I sat here looking at my totally oblivious DH and nearly cried (if the Sjogren's would only let me produce tears, that is). I know that I feel bad about what this is doing to him, and I'm sure that others feel the same way. You did a great job of speaking for spouses affected by lupus and other AI diseases. I know that my hubby just wants to fix things for me, and then feels very frustrated when he realizes that he can't.
Your support and understanding means the world to your spouse, even if they don't say it. Keep researching and learn as much as you can about what your spouse is going through, and keep coming here. We appreciate your input, and we'll try to help you out if we can.
Thanks for being there,
Marla