what to do with the rest of my life

[lrusdahl]

:help:
so i have been not working for almost 1 year and this is really hard for me to take grips with. i do not feel well enough to work but i feel like i am loosing myself while i sit at home (or in the dr office, or sleeping). i just dont know what to do? i get down on myself b/c my husband works really hard to support us. i get depressed and cry a lot! sometimes i just can not think that there is enough in me to wake up and survive another day. i know that in this iam not alone but i just need to blow off some steam sometimes and i dont want to blow up at my husband.:help:

[kuntrygurl78]

Maybe you could take up knitting and then send the blankets to a local hospital. That way you feel like you are doing something productive even when you dont feel well. My grandma did that when she had breast cancer and it really helped her. I have a scarf and 2 blankets that she made that are just beautiful, and I will always treasure them.

I hope you have a better day!:angel::hi:

[ICNDonna]

Kim gave you a great idea. And if you don't knit, you might try sewing --- anything to give you something to do. I met a lady who makes tiny knit hats for babies in the Neonatal Intensive Care Unit at our local hospital. Another makes quilts for abused children who are picked up by law enforcement to go to foster homes. And in our area, every child picked up is given a stuffed animal, some hand made.

Donna

[SandyRN]

I know how you feel. I had to give up my job that I worked very hard for as a RN. I had just gotten transferred to a high risk unit that they only picked very qualified nurses for, barely worked in that job 6 months before I started feeling very tired, and in pain that just would not go away. A few months after the fibro symptoms started I went out on disability. It's a very hard to wake up every day sleepy and so tired you can hardly get out of bed. Right now that is my biggest issue (besides stomach problems)....fatigue is sometimes overwhelming. I had a bunch of lab work done at the doctor's office on Monday and you might want to have your doctor check your thyroid levels. Being hypothyroid can REALLY wear you out to the point that you want to sleep all day. Also depression in general can make you feel this way.

I think you should see a doctor, internist maybe, and get him to investigate a few things for you. It's possible a drug like cymbalta that works for pain and depression might be the ticket for you, or simply taking a thyroid replacement medicine.

You're not out of options and you're definitely not alone!

Hugs, Sandy

[lrusdahl]

thanx for all your ideas and support. i am going to think about doing something like that for the hospital or the kids.
i just feel so useless and just want to hide someplace and not come out!:confused:

really thanx

lori

[SharonA]

Doing volunteer work is a very good idea. It helps take your mind off of things and gives you another reason to keep going. (((Hugs)))

[Cherie K]

I know how you feel. I also don't work and my husband works so hard. and now just had a bit of bad luck at is job so he's in a shop he does not like and that makes me feel worse. I want him to like his job at least. I feel like such a big useless burden.


I have been wanting to do volunteer work for awhile but don't know how to get started or where to go and if I could even do it. I do make quilts though and maybe I can get my self to make them faster but how do you donate them? and how do you know who they go to? I have been thinking about making one for my doctor too because he has helped me so much but not sure if that is a good idea or not.

[SharonA]

You can contact your local hospitals, your local red cross, your local churches, your local Salvation Army, etc. There may also be a separate "volunteer" organization that has lists of organizations that need volunteers.

:) :) :) :) :)

[karen10]

I know (I think!) how you are feeling! I felt the same way when first diagnosed and dealing with crazy symptoms all the time! I left a stressful job and was discouraged about not ever being able to work again. I guess I was going thru the anger phase of grieving (I tend to stay there more than the depressed phase) and that always motivates me. I spent two months researching everything I could find on IC, 10-12 hours a day. This helped to empower me. I talked to as many people as I could, went to the medical library and then started working on promoting awareness for IC. I did this with the help of other IC patients and began presenting at health fairs. We also contacted local media and my friend's story just aired last night. Here's the link:

http://www.cbs46.com/health/15271882/detail.html#

So, don't give up trying to advocate for yourself!!! It's necessary to grieve at times, and to rest when not feeling well, but just keep pushing for answers! Be willing to try anything that has worked for others (and of course has validated research and is checked out with your doctor first).

Hang in there! It does get better. It's really important that you learn to cope mentally. Dr. Kristene Whitmore, an IC doc who has seen over 8000 IC patients and been involved with IC for 20 years says: "if you can't cope, you can't heal." She recommends therapy for all IC patients.

I hope you find some relief very soon! :pray:

[kdksa54]

I was DX in 2004 with IC and had worked a variety of jobs due to the pain and missed days due to treatment. I finally found a job that was perfect for my credentials and my personality, the best part was I helped my husband get a job there as well so we got to see each other at lunch. I had been thier since June of 2006 and was really making a name for myself with my boss and the president of the company. In march of 2007 I had sooooo much pain I could barely get out of bed or sleep. Finally I went into the hospital I was thier for 5 days with a bladder infection and intestinal infection. They kicked me out after 5 days with the lead Dr. telling me he had one more regular Dr. he wanted to have talk with me before they dismissed me. The regular "Dr." was a psychatrist who said that I must be depressed because I was on Elavil. I tried to explain that it was a standard treatment for IC and that other than being in a lot of pain, with little relief and people treating me like I was crazy I was really not very depressed. Well after I was released I went to a new Urologist and OB/GYN who immediatly took steps to help. I had some X-rays, CT Scans, and MRI's for the chronic pain in my right leg. The pain and muscle weakness was contributed to my IC, since everything came back normal. I had some scar tissue removed from my three C-Sections, they checked for endometriosis, to figure out the reason for my ovarian pain, and then did a cystoscopy w/biopsy. The cystoscopy showed that the lining in my bladder was almost completely eroded. I did not have endometriosis, and was recomended for an interstim device. I wish I had known then what I know now so I could have declined the offer but I didn't and now I have an implant that had to be turned off becuase of the intense pain at the battery sight. I moved to Ohio to be near to family so they could help me raise my three girls. They are 12, 6, and 5, my husband is soooo great but he can't do everything by himself. I have been working in some capacity since I was 13, at certain points in my life I have been the bread winner and took pride in knowing I could provide a better life than I had for my family. But now I can't work, I can barely walk with out either my crutch, cane or I have to use a wheel chair, because my right leg is so weak. I tried physical therapy for my leg and was told that my condition didn't seem to be related to my back and they agreed it was organ related and thier was nothing they could do to help. I have to take naps through out the day but I also have my 5 year old at home because she doesn't start school until this fall. I have had to come up with intersting things to keep her busy without getting into trouble while I nap. I can no longer have sex with my husband because the pain is to intense and it lasts for days. I feel like the further this disease goes on the more and more I am loosing who I am, and who I used to be. I have gotten used to all the doctors telling me they can't help me, even my new ob/gyn said there is not much he can do for my ovarian pain. I have a pain management doctor is wants to change my neurontin to lyrica a stronger nerve blocker. I am afraid the side effects may be to much for me to handle since I am already having issues remembering things, and finding simple words. I try to help as much as I can but then my husband reminds me that what I do today will affect my pain level the next day. He works, cooks, drives, helps with the kids, and really tries to make me feel better and most importantly normal. He never gives up hope that I will get better, but I am not so optimistic. I have applied to SSA for disability because several of my doctors have said they don't think I will ever be able to work again. I have found that keeping a journal of my disease, how I feel, what medications I take, what the doctors say, what I ate, how many times I was up in the night with pain or going to the bathroom, if I feel useless as a mother, wife, and person. I write what ever feels comfortable that day. I have found it really helps to write down my feelings and leave them on the pages. I have read many of the other suggestions people wrote you and if you are good a making things that would be wonderful. I however am one of those people who have no physically creative talents but I can write. The other reason I do this is so I can look back on my experince later in life, and if I am not around to see my children live thier lives they will have a journal of my life and thoughts. I have IC, Chronic Pain Syndrome, and probably some issues with my reproductive system they haven't figured out, I only have my ovaries and cervix, due to my last pregnancy being a placenta previa that was attached to my uterus and my bladder. They were able to save my bladder but not my uterus. My youngest daughter my also have some mental/emotional disorder due to the lack of oxygen and her being premature. Unfortunately we have not been able to dx what is wrong with her. She does have exema, low blood sugar issues, is not able to process and retain fat normally. She once passed out with a blood sugar of 40 which is leathal if not treated immediatly. All in all it is a struggle and sometimes I think my family would be better off if I left so they didn't have to take care of me. My kids are so used to having to take care of me it makes me cry because I should be caring for them. My heart breaks when we have to cancel plans because I am not feeling well. My one saving grace besides my family is my 84 year old Grandmother, she had bladder cancer and injured the nerve in her right leg and has trouble walking. She can relate to my pain and my frustration. I joke that since I always said I wanted to be just like her that I got what I wished for. God deffinately has a wicked sense of humor. I am glad that I am not the only person who feels the way that I do. Cymbalta did help some with the day to day depression, some things no medicine will help with. I had to stop taking it becuase my insurance company refused to cover it. They tried me on paxil but the depression got worse. I have also tried zoloft but I couldn't make any important decisions I would just shut down. I will say that I do not respond to treatments and medications like most people so I wouldn't necessarily take my reactions as gospel. That is another reason my pain management DR. has troubles with me because of the list of pain medication I am alergic to. I hope this has helped you and I am glad for the forum to discuss my situation. If you need to vent or want to talk my email address is kdksa54@yahoo.com.

[lrusdahl]

thank you so much for that insite. i write down my issues and pains that kind of thing each day but didnt really think about the rest.

my hopes and prayers are with you and your family.
and i hope that we cacn vent or chat soon i'll email you

[muxerr012]

Hey what about working from home on your computer? You can set your own hours too!! My sister worked from home for extra income for the home shopping network taking calls and placing orders. She made some GOOD money doing it AND she got to set her own schedule around her other full time job. You can sign up for shifs whenever you feel like it!! Just a thought :)

[Berkshire Road]

The easiest volunteer work you can possibly do is go to freerice.com.. It's free to use, you can do it at home any time you're more or less awake, and you can do it any time you want. Basically, you take vocabulary quizzes, and the more you get right, the more rice gets donated to the U.N. Millions of people are doing it, so everyone's contribution, however small, is a help. Plus, it's a lot of fun.

[hdb1982]

Gina, How did your sister get setup with the hsn job? I looked under the career section on their web page but didn't see anything like that. If you wouldn't mind, you can pm the info if you would rather do it that way. That is the kind of job I need. Thanks ~ Heather

[lnseagraves]

Hey,

I actually work in a field that needs to use a lot of volunteers (museums). Before my current job, which includes managing volunteers, I volunteered at a number of local museums. When my IC was bad, this was a good compromise as it was rewarding work in my field and it was still giving me experience but with not as much of a commitment.

If you are looking for good volunteer opportunities in your area, (not just museums but other non-profit and service organizations) visit 1-800-volunteer.org. http://www.1-800-volunteer.org/1800Vol/OpenIndexAction.do?nationalPortal=1

You can sign up at this free website and they will give you volunteer opportunities in your interest area that meets your time-commitment requirement. (in other words if you can only volunteer occassionally, it will give you those positions, if you want to volunteer weekly it will give you those positions etc.) The site also has a feature that you can sign up for email alerts for volunteer opportunities in your area.

Most cities/states also run their own websites that are affiliated with 1-800-volunteer.org You can usually find those if you google your city or state and "volunteer".

Happy hunting for rewarding volunteer jobs!

[muxerr012]

Hi Heather,

My sister and her 16 yr old daughter worked taking calls at home last year for the HSN. I'll try to find the website they used. I know that it was a website of 3 different companies offering employment for NO fee. They signed up, passed a verbal test by phone and were hired. I believe they were paid $11.50-12.50 per hour. I emailed my sister and will let you know if I find out more info. Thanks!