How do you get through the day? I could really use some insight.

[Minneapolismark]

This is my biggest challenge, so I hope you will share some of your strategies for getting through the day.

My toughest day is Tuesday. I take my Mtx injection on Monday and feel pretty crummy on Tuesday. The physical discomfort isn't that big a problem, but I also tend to become very negative, dark and even paranoid with my thinking. It is very tough getting through the day. It is the worst in the morning. I am on anti-depressants, so there isn't an obvious pharmaceutical solution.

On bad days in general, I am able to make the bed. I'm careful to not make much of a mess because I don't have the capacity to clean it up, and I don't want to burden my lovely wife.

I feel very isolated most days. I have moved about an hour away from my former home, and it is a long way for friends to come on casual visits.

I am not proselytizing here, but I am thankful that I can read my Bible more regularly now. I was too unfocused to read very much until recently.

TV is OK, but at the end of the day I just feel empty if that is all that I have done.

When my son and wife are around then things are good, of course. But that is a relatively small fraction of the day, and I can't lean on them too heavily.

So, assuming I'm not the only one trying to cope with the emotional and mental disturbances brought on by Wegener's and the associated drugs, how do you all overcome... despair, isolation, purposelessness, negative thoughts, feeling overwhelmed?

For me the physical problems and discomforts are nothing compared to the psychological battle. To borrow from Yogi Berra, "Ninety percent of the game is half mental."

Thanks in advance.

[dunkie2202]

I'm sorry you feel so down Mark. I don't have any strategies for getting you through the day. The emotional and mental disturbances are from the drugs we all have them. The only way I can overcome it is to have a good cry when it gets real bad and try to get it out of my system. Believe me I've done that a lot over the past few months. It does get better once pred is lowered.

[Minneapolismark]

Yeah, I probably shouldn't have posted this question. I really don't want to be a whiner.

I have to say that the "it gets better" concept is not much fun, although undoubtedly true. That is what people said to me when I went through the unimaginable agony of divorce.

There is much that I am grateful for, but I also feel lost much of the time.

I have spent most of my life using whatever skills and assets I have to help others, and now it seems I can't really help myself. If I win the battle, there is a very good chance that the prize will be "new normal," and not my old life. I won't give up, but I didn't plan on getting this old this quickly. It honestly isn't the physical pain that gets to me, although there is quite a bit of that. It is the psychological dysfunction that colors nearly every day.

I once walked two miles with a compressed vertebra. I once sparred for a half an hour with a broken wrist. I once played out a rugby game with my two front teeth snapped in half. I always found the strength, focus and determination to rally and win. The scary thing about Wegener's is that the strength itself has deserted me! There is no strength, no reserver, no extra push that I can call upon to overtake this foe.

Again, pardon me for whining. That too is something I'm not used to. And another problem is that the bizarre and transient nature of my Wegener's symptoms make me doubt my own perspective, feelings, and mind. Very unsettling.

[JanW]

Mark -- I'm sorry you are feeling so down. I don't have a lot of the physical limitations that you have, but I know that I have always felt my worse when I am on pred -- maybe that is true for you too? And of course I remember that you suffer from chronic pain, which naturally affects your mental state.

I'm sure others here will have good suggestions and please talk to your docs at Mayo when you see them as well.

[Minneapolismark]

I guess the bottom line is that I don't know how to be weak, and now I am.

[vdub]

Yeap, I definitly know where you are going. I used to be very healthy, strong, and up-beat. Now? Walking a couple blocks and I'm out of breath. And what really makes me unhappy is that I'm only 59! Lately, I've been real good mentally and I've been reasonably energetic, at least, during waking hours -- I have been sleeping 10 - 12 hours a day. But, like you, I am totally po'ed with things not being the way they were and it happened almost over night.....

[Minneapolismark]

I still have the power to choose. What I think about, how I react, how intreat others are some of the many things still in my grasp.

My kids asked what pred rage is. I explained it and they laughed because they have never seen it in me or my behavior. That is a different kind of victory born from a different kind of strength, I guess.

[Sangye]

Mark, I started seeing a therapist when I got dx'ed with Wegs and I've gone weekly ever since. It's helped me with all the issues you mentioned. I honestly wouldn't have been able to cope without it. There is a difference between a bad day or a few bad days--which you will surely get over-- and the ongoing difficulties and challenges that are part of living with Wegs.

You can muscle through it, but it sure helps to find a different way of being in the world that is more effective, relaxed and adaptable.

[drz]

Mark, I started seeing a therapist when I got dx'ed with Wegs and I've gone weekly ever since. It's helped me with all the issues you mentioned. I honestly wouldn't have been able to cope without it. There is a difference between a bad day or a few bad days--which you will surely get over-- and the ongoing difficulties and challenges that are part of living with Wegs.

You can muscle through it, but it sure helps to find a different way of being in the world that is more effective, relaxed and adaptable.

I agree with above. I requested mental health help when I was first in the hospital after diagnosed with Wegener's. Losing my hearing, kidney function, and fighting for every breath due to bleeding in my lungs was a big adjustment for me to deal with these losses. Coming out of intubation and learning to swallow and learning to walk again was also a challenge. I think the psychotropic meds and counseling helped me come to terms with my new limitations and the uncertainty of dealing with Wegener's disease.

[elephant]

Sorry you are going through a rough time Mark. I enjoy reading your post, you have so much to offer!

[DEE]

hi Mark
i too had a six week concelling (sp) sessions in the early stages which helped with exception of the disease and also falking to somone out of the box meaning not family ,not friends and not doctors helped
sometimes we did not even talk about wg but about things i still wanted to do and learnt to take onboard the bad days because the good days will come !
so keep your chin up take care of you DEE x

[Jack]

Mark, you can moan as much as you like on this forum, we can all understand your feelings even if we have not reached that point ourselves. The mental side of this disease is just as likely to need treatment as the physical side, not only are you having to cope with the consequences of the disease, but the effects of some of the pills (especially Pred) don't help.
I feel lucky that I have never needed much in the way of social contact and I'm also very accepting of life as it presents itself to me. I spend a good part of the day in front of the TV with my Laptop beside me and also have an hours sleep at some time during the day. Just occasionally things will get on top of me and I'll break down for a few minutes and I now don't handle stress like I used to so I know that I'm a bit near the edge. ;) It's only to be expected, but needs to be at a level that you can live with.

[Jaha]

Mark,
I too, struggle mentally, with not having the strength to fight this the way I used to be able to fight most anything. Your feelings are felt by most of us at some time or another. It's hard to go from being a very active-productive person to sleeping alot of the time. I have problems with feeling guilty if I'm not being what I think is productive. Thanks for your honesty and I hope that you know that your expression of yourself and your shared thoughts is always helping others on this forum.
Jaha

[Minneapolismark]

Late yesterday afternoon I felt awesome and remain feeling great today. This was my first week on Mtx injection and with a greatly increased dose, so this probably caused my emotions to tank as they did.

I'm still all Wegged up, but don't feel depressed, angry or claustrophobic.

Also, to be frank, the drugs they gave me for the Nuclear Stress EKG caused me to soil myself in a furniture store later that day. It was pretty bad and nothing like that has ever happened to me before.

There is so much shame around loss of bowel control dating all the way back to early childhood, and I think I invoked all that shame in that store.

I've forgiven myself; I really had no choice; it was aweful beyond description.

So thanks for your encouraging words. The worst part about having your emotions tank is that it seems as though that emotional state will last forever, and it doesn't.

[Jack]

I can sympathise with you over the bowel control thing, I've been caught out twice, once in hospital and once at my sister's house so neither situation caused comments or problems, but I had a great deal of trouble dealing with it mentally. I think that many of us are living near the edge of our tolerance to stress and things like this are just too much to handle on top of everything else. It takes a long time to come to terms with all the changes and to get some of the more unpleasant parts into perspective. I just keep reminding myself that I have had otherwise healthy friends who have not even made it this far, so I'm already doing better than them! ;)

[Sangye]

Oh yeah.... 2.5 years on Cellcept and there were a lot of very close calls. Sorry you went through that, Mark. :sad:

[Terri]

Hi Mark,
Glad to hear you are having a better day. You will learn how to cope with different situations. I think it is in us weggies to fight (otherwise, we wouldn't have this disease). I remember how I was when I was first diagnosed feeling much of what you talked about. Everyone on the forum kept telling me that things would get better. I know now what they meant. It took me 8 months to get back on my feet and I mean that literally. That was 3 years ago and I am fortunate to be able to still be working, so I do get out.
I wish you better days ahead and just continue to think positive and you are not a whiner!:flapper:

[Minneapolismark]

The Mrs. And I went to a jazz cafe/ wine bar last night. Today we just hung out together, and I feel much better.

Just realized yesterday that for the past severalnweeks I have been taking 100mg of Atenolol, rather than the 50 prescribed. This was due to a pharmacy error. That could have definitely lowered my energy level and mood. It is a wonder I am not dead!

[dunkie2202]

Mark,
I too, struggle mentally, with not having the strength to fight this the way I used to be able to fight most anything. Your feelings are felt by most of us at some time or another. It's hard to go from being a very active-productive person to sleeping alot of the time. I have problems with feeling guilty if I'm not being what I think is productive. Thanks for your honesty and I hope that you know that your expression of yourself and your shared thoughts is always helping others on this forum.
Jaha

Yes Feeling Guilty..Thats it..... for the life of me I couldn't get the words to go with the emotion
My husband works hard long hours and then comes home to look after me. Its the Guilt I feel because I can't do these things myself.
I use to work up to 7 days a week, have the washing done the meals cooked and make hubby's lunch for the next day. Its frustrating
you feel useless and guilty because someone else is doing it for you. Your independence is somewhat gone.
Hopefully 2011 will be a better year for all of us :thumbsup:

[dunkie2202]

The Mrs. And I went to a jazz cafe/ wine bar last night. Today we just hung out together, and I feel much better.

Just realized yesterday that for the past severalnweeks I have been taking 100mg of Atenolol, rather than the 50 prescribed. This was due to a pharmacy error. That could have definitely lowered my energy level and mood. It is a wonder I am not dead!

I'd say that is a big YES Mark double dose OMG...note 2 of the side affects are depression and fatigue
Glad you had a nice night out :biggrin:

[LisaMarie]

Mark SORRY u r having the emotional roller coaster ride...it suck..been ther alot lately..enjoy your night out

[Sangye]

Holy smokes, Mark-- that's a very dangerous drug to take incorrectly. Please call the pharmacy and raise a little hell and also let your doc know it happened in case they need to do something. Did you do the stress test while taking the wrong dose? You might need to repeat the test.

[Jack]

Making a mistake with your dose is a very serious matter, but I don't think you need worry too much in this case. I take 100mg myself and have tried to get by on 50 but find that it is not quite enough. Do not change your dose of Atenenolol too quickly or you will feel the effects.

[elephant]

Mark do you have a blood pressure machine to check your blood pressure daily. I think it is important to check it daily ( esp if your on high blood pressure medicine and changes in medicine, weight and disease), I have for over 20 years. I think it has saved me from having a stroke.

[drz]

Mark do you have a blood pressure machine to check your blood pressure daily. I think it is important to check it daily ( esp if your on high blood pressure medicine and changes in medicine, weight and disease), I have for over 20 years. I think it has saved me from having a stroke.

I have variable prescriptions for two blood pressure meds so take them according to my blood pressure readings from a portable machine I bought at local drug store. I was on three until I fainted from low BP and dehydration. I think the oxygen meter which also give pulse rate is also very helpful in assessing daily health. I was also told to check temp regularly as part of self monitoring at home.

[Minneapolismark]

I am feeling loads better on my true dose of atenolol. I also take Lisinopril HCL, so there is a cumulative effect. 100mg, for me, was a disaster. It could have been partly to blame for my recent "mock heart attacks". Anyway, I seem to be doing better... :thumbsup:

[vdub]

I hate to hear of anyone going thru bad times, particularly when things are going well from me. Makes me feel very guilty.

I'm almost sorry to say this, but I am feeling great! I have granulomatosis hypophysitis due to WG, so I'm a little bit different. The most important thing to me is my cortisone. A couple weeks ago the pharmacy ran out of the generic stuff and had to give me the real McCoy..... Dang, I think it made a difference. I haven't felt this good in months. On top of that, they gave me 1,200 tabs!

One thing that is concerning me is a constant headache and a semi-constant cough. Both are being held in check by Tylenol/Codiene (T3) until I can see the specialists in SLC. Live through chemicals.....

[Jack]

100mg, for me, was a disaster. It could have been partly to blame for my recent "mock heart attacks".
Atenolol affects the heart's rhythm so can be quite alarming. I get the same effect when I reduce below 100mg. I can just about get by on 50 but I don't feel quite right so 100 it has to be even though my pressure is low. I don't get any fainting or anything so it does not worry me and I think it is quite good for the kidney.

[Sangye]

vdub, that's great. You should ask your docs to prescribe brand name only as medically necessary. I have that for several of my drugs.

Bad combo--headache and cough. It's also concerning. When is your appt in SLC again?

[vdub]

I am definitly going to make sure I get the good stuff.

I messed up last night and had bad night, but it was my own doing. I forgot to take my night time pills which is desmopressin. I have been wondering how long it would be before something like that happened. Now I know -- 8 months. Fortunately, forgetting the desmopressin is not an earth-shattering experience. You simply pee a lot and drink a lot of water. I got up around 0200, drank 5 bottles of water, then had to get up again at 0300 and drink some more. That's when I figured out that maybe I had forgotten, so I checked my pill-minder and, yeap, Saturday's evening pills were still in the box.

SLC apt is first week of Feb.