Feeling Sorry For Me Today

[MikeG-2012]

Poppy, I too went back to work full time a month after my diagnosis in April of 2012. Worked through the Cytoxin and boatloads of Pred. I also traveled to LasVegas for a convention in June of that year and and 650 mile one way to MO on the motorcycle in July. When the pred started to taper down, I lost my invincibility factor and crashed, almost like you posted here. Life then sucked pretty bad for a few months, until I learned what my new normal is.

Now, almost 24 months later, I'm back trying to recover after a nasty flare-up and going through a lot too. I'm back to work about 35 hours a week, and crashing on weekends. Have to work to keep my benefits so I can afford all the healthcare bills. So, know that you are NOT alone!

[mishb]

I also work weekdays 40-45 hrs a week. Up at 5.00am and home at 6.00pm.
On the weekends I sleep until lunchtime (except for the half hour that my husband wakes me with some breakfast).

My job isn't very strenuous most of the time, just a desk job, however I can see how hard it would be (and is) to work fulltime.

I'm like Mike, I need to work to keep the bills paid.
I do have a lot of sick days owing, so can take them if I need to.

Just recently I have started taking every second Wednesday off, just to recharge the batteries in the middle of the week.

By all means, feel sorry for yourself.........you deserve it as much as anyone else does.

[jakekell]

Poppy64,

I just joined the site and did because of feeling sorry for myself day. I feel better just knowing I am not alone as I have had this for 8 years now with no one that understands the day to day. My Husband is great just always hate to share it all with him as he deals with this everyday. Thank you for sharing as I know I needed to hear what you had to say.

[mishb]

Hi jakekell and welcome to the forum and your first post.

Eight years is a good time to have WG, you are quite allowed to have a "feel sorry for yourself" day.

We would love to hear more about your journey. What has affected you, what medications you are or were on and have you reached everyones goal, being remission.

[Michael Bell]

Hi Poppy, I realy crashed when I got Wegs, I was in hospital for five and a half months, two of them in an induced coma. But two months after leaving hospital I started back to work part time and built my hours up over the next two months until I got back to full time (four twelve hour days, then four days off, then four twelve hour nights and four days off)> it has been very hard at times and I've lost a few to infections but I could not sit at home watching day time TV. Keep strong, keep pushing and always have a rant on here when the need arises. You will find many sympathetic ears. Good luck and God bless.
Mike

[dennis2512]

hi take care yes it is hard working my husband has wegs and works fulltime I admire hes strength try and rest as much as possible and vent whenever you can to anyone who will listen, as a carer and also having lupus myself ive had to vent to cope through the rollercoster crissie

[jakekell]

I have had many rough spots since this began, but hanging in there as it sounds most are. I was first put on the heavy does of Methotrexate once a week for 4 1/2 years along with heavy does of the prednisone as I have gone deaf. The Methotrexate was giving me the gift of many infections until I had to stop it even thought the Docs said no.

My daughter did some research on using C-Naltrexone 4.5 mg for MS/Wegs, no real side effects and sounded like good results. My Doc only wanted to do the "norm" treatments so looked for another doctor. This is a drug that is compounded for me at about $40 a month. I went to a compounding pharmacist and ask for more information about the C-Naltrexone. This pharmacist said he feels it is a super important find for looks of things especially people with MS/Wegs/Lupus issues. I told him that my doc said he wanted to go with the same treatments I was on so looking for another doc. The pharmacist told me he couldn't recommend docs, but he would tell me the doc that treats many MS/Wegs/Lupus people in the are I am from. I am in the Kalamazoo Mi are of the US. I took the docs number and been going there since that time.

I began the C-Naltrexone 4.5 mg about 3 1/2 years ago now and doing better than I ever did on the other meds. The med takes time to work, but not to long. I am still tired, some swelling in the legs/ankles, joint pain not to bad (it was very bad) sinus issues better, nose bleeds down, kidneys good so far.

I worked the first 5 years for a bank so a sit down job, but the stress didn't help I am sure. I don't seem to go totally into remission, but if this level maintains it is do able most of the time. I am now retired 68 this year so a lot of the stress is gone, but the C-Naltrexone 4.5 mg have made a world of difference for me. I am down to 2 mg prednisone I started on 80 mg and gained 60 pound. The weight wasn't helpful as some of you know I am sure. Thanks for listening need this for a long time I am thinking, hope it helps some one.

[Alysia]

Hi jakell,
welcome to the forum. maybe you should write a new thread and introduce yourself, if you feel like.
that med is intersting. I don't know it. I wonder if others around have any exprience with it.

[Alysia]

I also work weekdays 40-45 hrs a week. Up at 5.00am and home at 6.00pm.

wow, so many hours, Michelle, I declare you as superwomanweggie

[NikkiNicole]

Hello Poppy,
I also am working full time (plus many hours of overtime) while dealing with this. While I am not as banged up as you, I struggle constantly with the 'fed up' feelings and feeling like I can't deal. I hear your pain! I hear it loud and clear. It's comforting to me, reading this, and knowing that I am not alone in this world feeling the way that I do. Hang in there girl. We are all here behind you, and while we may not physically be able to help lighten your load a little, our ears are always turned your direction for you to scream and vent and cry and shout. I am always here.

nikki1412 at gmail dot com