Feeling Sorry For Me Today

[Poppy64]

Well today is my day of feeling sorry for myself. I'm just so tired and done with this awful disease and medicine that makes you feel worse. I felt better before I was diagnosed. I couldn't breath and sounded like Darth Vader but I didn't feel achy and tired every day. I was diagnosed end of August. Have had 4 bronchoscopies and 3 rituxan infusions since then. Started off with 80mgs of predisone along with cyclophophosphamide, Bactrim, omprazole, 2 inhalers and singular. Am now on a high blood pressure pill and am down to 2.5 Mgs of predisone and taking everything but the cyclophosophamide. Got pneumonia after my 2nd infusion and the flu (I did get my flu shot) after my 3rd infusion. Scheduled for another bronchoscopy Thursday. I also work full time 5 days a week and oh, going through menopause and hot flashes all day and night! Im trying to not let this disease run my life. have only taken 1 day off from work since i have been diagnosed. i go in after infusions and bronchs. I'm tired, my body is tired, I'm achy and scared. So now I vented and I'm gonna put on my big girl pants and get through this. Sorry for the rant just needed to get this out. Thanks for all your support.

[Allisonquast]

Oh poppy hang in there ! I'm amazed you have worked while going through this. You are very strong!
I'm just the caregiver and I've had to take time off work. I am familiar with the hot flashes etc, maybe your doc can give you to help with that. It's tough on its own. Stay as strong as you are mentally and you'll feel gain your physical strength back.

[Pete]

I can't imagine working full-time while in the active phase of this disease. Hope you feel better soon!

[vdub]

Not to worry. Its pretty normal to go through this phase. It could last a couple years, but eventually you will find your new limitations and boundaries. Once you find your limits and start settling into your new life, things aren't quite so bad. It takes a while, though. It took me 3 years. Hang in there. No harm in crying once in a while.

[windchime]

Poppy I admire you for working through the entire mess. Wow. Sounds like you are in need of some rest. There are others on here that have worked through it too, but I think it would make your recovery slower since you are not getting the much needed rest that also goes with this disease. Are you able to take a leave of absence? If taking off is not an option for you, is it possible to work a reduced schedule for awhile. Something to give you a little down time to recover.

All the added illness has not helped to be sure. Full recovery from pneumonia and the flu can take weeks. So some of what you're feeling may be residuals from those two illnesses. Best to you and keep us posted.

PS It's okay to feel sorry for yourself. We all have one, two, or three times before. Hang in there, this too shall pass.

[renidrag]

I too can't imagine working full time with all you have gone through. Ranting is good for you and we here understand. I hope you can find some you time soon
Dale

[Debbie C]

Poppy,I also can't believe you are working thru all of this. Can you see about getting disability or getting a note from your dr. saying you need time off ? I don't see how you are doing this it's now wonder you need to rant. I do it all the time and I am not working. And then going thru menapause on top of it :sad: Stress only makes it worse so try to take a break from it all...Take care

[Poppy64]

Thanks everyone for your encouragement. I think the working part is actually keeping me sane. My husband and I also have a 17 year old daughter with down syndrome who is also legally blind, non verbal and totally dependent on us. Wouldn't trade her for anything. Love her with all my heart. My pity day is over and I am feeling much better today. Just needed to let it out.

[Alysia]

Hi Poppy,
thanks for sharing. we are here, just to be with you, for whatever... :hug1:
I understand and know about the things that you are going through... the pains, the fears, the fatigue.
I also work and there are days in which it is so tough to endure the day, when feeling so bad.... sometimes I am kind of "holding"/forcing myself to do what I need to do, and then, after it, I cant stand on my feet anymore...
try to find more rest... take care and continue to write.

[ingemlb]

Hi Poppy. I am amazed by your strength. I can understand how work can distract and stop you from focusing on the illness all the time but with that heavy load I can't imagine how you can pull it off. Your daughter although adding joy also adds stress. Our youngest son suffers from Schizophrenia and it is a constant worry for us and since me coming home from hospital he has had a psychotic episode. He is 40 but more like a teenager. Venting is great. But don't go too hard on yourself. As others said , rest is very important to help with healing and you don't want to give this illness any more power than it already has.

Don't know where you live and what your situation is with sick days but I would strongly recommend not pushing yourself this hard and taking time to recover. Especially on treatment days, surely there must be ways to be able to take those days off.

All the best. Inge.

[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 :thumbup:

[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

[jakekell]

Hi Alysia,

I am not very good with the computer, but will try to figure out how to do a new threw with the info I put on this one.

Thanks for the FYI

[Auntie TooToo]

Hello Poppy....I too am amazed by your strength and while I understand how keeping working helps keep you sane, I still don't know how you do it. I was diagnosed back in April 2013 and due to both upper/lower respiratory complications and infections, I have not been able to stay on prescribed medication long enough to be of any benefit. Due to the pain, fatigue and respiratory issues, my rheumatologist took me off work back in August 2013 and I am still currently on medical leave. Thankfully, I had alot of time accured so that has not been an issue until just recently. If you can continue to work, I say keep it up .... but I do know that it is very important to get enough rest and watch our stress levels with this disease. With everything your dealing with, just make sure to take time to take care of yourself .... that way you can take care of your precious child.

[LillysMom]

After living for 20+ years with WG through our daughter, it occurred to me just today that for some diagnosed young the disease becomes a part of who they are. Physical struggles with fatigue, tissue disintegration, pain, kidney and other organ problems are life changing for some, and all that others have known for their adult lives. Other people have emotional and mental problems, addictions, damage from birth to death from sexual and other abuses, or birth defects. I have watched Lilly struggle, and my sister-in-law got MS in her 50s. Very fast debilitating kind. She has mandatory infusions each month! They bleed her bones so much that they break easy, is now trying to heal from cracked bones in her back, wearing a back brace 24/7. Both these women are the most precious people . . . very selfless, humorous, kind, loving . . . and it is easy to wonder why them. There are bad days for both of them. Sister-in-law calls me when she needs to vent, and some of you have heard from Lilly on her bad days. Anyone with this horrible disease NEED to vent and have 'feel sorry for myself' days, or they would not be human. So, for the times you feel better, I say from observation, concentrate on things you love to do, and know that what you are experiencing is 'normal' for you. No one is actually 'normal', anyway, we all have our challenges, some worse than others, and WG is part of who you are and will be. I hope and pray for everyone on site that your normal will be minimal and many remissions. All of us will have weak times and strong times. Accept them both and revel at the person you are and don't feel guilty about your feelings and emotions. You are entitled.

[jvilner]

Hi I'm new to this forum. Dx 12/2013 with limited wg. Suffering 2 yrs beforehand. Wanted to thank lillys mom for your words. Sometimes I felt guilty for allowing myself those type of days. But they are inevitable I guess.


Sent from my iPhone using Tapatalk

[Alysia]

Hi I'm new to this forum. Dx 12/2013 with limited wg. Suffering 2 yrs beforehand. Wanted to thank lillys mom for your words. Sometimes I felt guilty for allowing myself those type of days. But they are inevitable I guess.


welcome. I know too well how it feels like, the guilt feelings... but guilt is making us more sick...
you are invited to tell more about yourself, if you feel like... open a new thread on "new memebers introdcution" ....

[Jaypfei]

Poppy I think we all feel like this at one time or another. I applaud everyone that works while being sick and taking treatment. It can certainly take it's toll , and while some of us try to work, sometimes it just doesn't work out. Keeping your chin up, your mind busy and having a support network like the good folks here is a plus. Just remember, you're not alone.

[Lilly]

Hi Poppy, Its so nice to meet you! Sorry under these circumstances, but like my Mom said, Its our "New Normal". I was actually really glad to see you vent on here. That's part of what this site is all about! Sometimes, no one understands, even our loved ones, that live w us every day and see our pain. Its not their fault, but its so frustrating! So not only do we vent here, you have seen all the other things we do. We support, listen, cry, laugh, compare out illnesses symptoms, how our drs are treating us, and with what, etc. I LOVE this site! I have learned so much about this disease, met so many great friends. I am in awe of what your going through right now. Women are strong by nature, we are nurtures', and it seems like we do what we have to do without thinking, it just has to get done....(and men are like this too! :-) ) Don't want to get in any trouble here!!!! LOL But Im really glad you are here, and I hope you stay here. I will be thinking about you. My Mom and I are running errands today, and she told me about you... right when she got here. So you have really touched her, and me as well. Hang in there. I have something I have shared with the site about a diet I am on that has made my inflammation of my joints go completely away. Ive lost 5 lbs, so now Im 155, but without the extra pain, I feel so much better. Ill be thinking about you and you family and your precious daughter. Talk to you soon!

[Poppy64]

Good morning everyone! Thank you all for your replies. My feeling sorry for myself day last a few days bit I'm back. Had my bronch and they did not have to dilate. Grew a little virus but not serious enough to treat. Still tired and achy but that's my norm now. Monday I start every other day with 2.5mg of prednisone. Taking a day off today and spending it with my husband. Again, thank you all for being here.