Need Very Big ADVICE

[MakinIT]

HI everyone...Long time no talk too...I'm one of the idiots who couldn't figure out why I had no access to speaking on the sight anymore and did a big DUH right before I read the disclaimer at the top of the page.
I am in serious need of advice. It makes a big impact on whether I am to go forward in life, stay stuck where I am, or if I am making excuses because I am scared to death and lack courage. I have felt very good the past 2 months. some soreness, a few flares, generally have to sleep each day between 3-5 and in bed by 9. Still take 180 mg MS contin am, pm and valium, percocet, 200 mgs Topamax...various other stuff. However my sense of humor has returned, my color looks good, and I generally feel good. I started putting out my feelers in my school district in terms of jobs for teaching and discussed w/my former principle if he would recommend me as a special ed. teacher with kids who are less severe than those I worked with before. (All my docs agree I can't lift 30 pounds or take any kicks or punches to the belly, it would be the End in terms of any life with my family my pain would be so high) Everything is squared away, resume is in, app is in, letters in, AND jobs are actually opening at my old school. Now, I am scared to death b/cause he wants to hire me for a position (but I have to go through the proper channels, ie:don't talk to him any more about it) and I had a horribly painiful, terrible week last week in terms of IC and pelvic pain. I couldn't move for the entire week. It started Sunday afternoon and got worse until I was bawling Sunday night. I had taken 2 doses of 2 10/650 percs and valium (15 mgs). I was still doubled over. I wound up doing something a little illegal to alleviate the pain (legal in my state, not in others...first time I've done it in a year) that finally eased my pain enough to get my daughters lunch made for school the next day, dinner made, and laundry finished (husband was finishing final projects in his classroom) Then I collapsed into bed. I was like that all week. I did see a massaue on Tuesday (I've seen her before) and she really helped just relax me) (And, no...I didn't do anything illegal again...I was desparate that night...and we all know how Emer-rooms are)...Thursday, I saw my chiro, and he worked his magic. thank god he has IC (not for his sake but he understands my pain) So I bawled again telling him the stress I was under, which i think is part of the pain acting up, and the pain...he did some huge adjustsments to me. My pelvic bone was so jammed into spine it was overlapping, After much torturtous twisting and turning (like a half an hour) a gunshot went off in the room and the pain dissapted. then he worked the soft tissue in my 24 pack(ha, ha) and I bawled through that (all the docs are thinking I;m going to have to get adhesions removed from my bowel soon). So my dilema is this...Do I really work my ass off to return to my job, or do I continue my time at home, collecting disability...when having a good day..being a good little wife and mother, and a bad day resting? I am ssssooooo scared no matter what I do. My husband is brilliant. Wants to break away from teaching and begin a full time consulting business. he has people all over the country who want him to set up programs at their schools. Just last year, while working full time, he made a very nice extra sum of money that are equivilant to some people's wages for a year...(like mine...on disability:lmao:
I'm sorry to sound so, I don't know, sorry for myself when it seems like I have alot. But, our marriage is in the toilet because he works so hard to make up for expenses incurred before I was ill. I have a Master's Degree in Teaching that I just, Ironically, paid of last month. That was bittersweet. $15,000 bucks in loans and I don't do doo doo. I wan't secure my future. My personal retirement account I turned into an IRA for my kids college. It's not much but It's something. I have my state retirement that will grow as I'm sitting on my ass but it won't be a whole lot when Ireach that age. So, I would also like to secure my future. My husband only bought life insurance to get my youngest through college (so a 15 year policy) with a sick wife,,,I was like ...what the hell? It would cost an extra starbucks latte each month to put 10 more years on that policy and cover me. My policy for him and the girls is for 25 years. Phooey.

Anyway, I'm sorry to ramble on. I know many of you are in much worse shape so I feel very shallow even coming with this issue but it is stuff I worry about. I really thought I was ready to work. I'm not sure now.

Thanks, I'm glad I've figure out how to work this now, ha, ha:dance:

[ihurttoo]

Okay, girl! First, take a deep breath and relax! The stress of the indesicion is what is killing your bladder. It isnt all black and white. There are a few gray options for you to consider. First of all, you could go back to work as a teacher, but instead of going full time, you could sign on as a substitute, that way when you feel like working, you can. And when the IC is flaring, you can not take the job that day.

Another option is going on full time, but SSD gives you several months to make sure you are actually able to do so. Then, if it turns out that you overestimated your health, you can just quit, and you havent lost your disability income!

Lastly, another idea would be to keep a pain diary for several months. Record your good days and bad, and how you feel throughout the day, as well as how much time you spend resting etc. Also, write down whether or not you would have had to call in sick, if you were working. Then, after 3-4 months, count up all the days you would have missed work. If you would end up missing more time than you would be allowed to thru personal days, vacation days, and sick days, then you are obviously not physcially able to return yet in a full time capacity. If however, you ARE able to work full time, then you will know for sure, and you can sign on to sub for the remainder of the year, and look for a full time positon next year.

Lastly, please talk to your dr about this and see what he or she advises. Sorry, I dont have any better advice for you. I know it is a very difficult descion. But please take your time and make the right one for you. We will be here for you every step of the way, rooting for you! Hugs, Amy

[MakinIT]

Thanks for the quick advice..thought of those things but if you've ever thought of subbing, it's Dante's seventh circle of hell, without benefits (and I would make less than I do on disability, if you can believe that!!!)

I am on Mr. Bush's new and efficient Governement programs that make you wait at least an extra 2 years beyone original estatements to see faces for a hearing. My lawyers are furious and have been fighting to get me in to get SS but I guess next Christmass is a good guess. Poop. My former school district has a LTD plan that is what I am subsiting on.

I will not just sit around and do nothing, next year if I can't work, I will volunteer in my daughter's school to help.

I want to go back to school to learn a new profession but my current LTD co. says "if you can go to school you can work"...they are such asses. I guess if I win SS, it will be less than my school district plan so the last 3 years...25% goes to lawyers rest to LTD...EXCEPT 500 each month for the 2 kids . The lawyers would get their 125 bucks and I would get 375 for each month I'm on disability.

Thanks much, you are great.

[ihurttoo]

I just thought of another job option for you, although it is not in your field, it is just a thought....elder care. My mother sits for elderly people in their homes. She makes $12 an hour and works at nite. She has sat with several ladies and the job is very easy. Mom goes in and makes sure they have eaten dinner, gives the person her meds, assists with her bath, and then the lady goes to sleep...and so does Mom! Mom has her own room there, and the lady has a baby moniter in her room and one in Mom's, so she can call Mom if she needs something. Most of the time she just needs Mom to help her to the restroom, if she needs anything at all. Usually, she sleeps thru the nite, and so does Mom.....all for $12 an hour. Then, in the morning, Mom gives her the am meds and cooks her breakfast and helps her dress. Then she goes home. That is it!!

It would be a great job for an ICer, b/c you could go to the restroom as often as needed, sit, stand or lay when you needed to do so, etc. Also, you could have a friend fill in for you when you couldnt make it. Granted there are no 401ks or insurance, but it would be something you could do while on disability and not risk losing it. It would be a great way to supplement your SSD income without risking it. You would also be free and alert in the daytime to attend classes if you wanted or whatever else you wanted to do. My mother found her first job by contacting the administrator at a nursing home to ask if they knew of anyone needing a sitter. Now she gets calls all the time from the ladies friends wanting to know if she knows anyone else that could sit for them or a member of their family.

Anyway, I know that you would probobly prefer to teach, as that is what you went to school to do, but I just wanted to throw this idea out there, just in case it might be an option that you had not considered. (Or in case there are any other ICers who need to find a job that would be accomodating to an ICer.)

I will pray that you make the right decision for your physical and mental well being. I know these decisions are not easily made. I genuinely feel for your predicament. Please know that my thoughts and prayers are with you. Hugs, Amy:grouphug: :kissing:

[vm]

Well, what decisions you are facing! I sure don't have any answers, but do want you to know I am thinking of you as you try to figure this all out and decide what is best for you and for your family. :kissing:

I don't know if you are a believer, but when I am faced with a big decision like you are - one that doesn't seem to have a clear cut answer one way or the other ----- I pray/meditate my butt off. I pray that I will somehow know in my GUT which course to take. I ask that all the people involved with my decision be given inspiration that will aid me in making the decision.

Then, if it still isn't clear, I tell God/Higher Power/whatever you call "it" that I desperately want to do the right thing, that I want to follow "His" will for my life b/c I know it is best. Then I decide and ask that "He" redeem it if I have chosen poorly.

I believe that when we have done all the footwork we can do, earnestly seeking "His" will, and then decide based on that - we can't go wrong. I believe if we choose "wrong" under those conditions, "He" will redeem it.

[If you aren't a believer and are offended by the suggestion of prayer - just ignore all of the above! :) :) :) :) ]

[ICNDonna]

I wish I could help you make your decision. If you have adhesions, you might think of resolving that problem before attempting to return to the work force. When I was first diagnosed with IC, I had severe pelvic adhesions and after I had surgery for that, it made a real difference in my pain levels.

And if there's a way you can go back to work on a trial basis without losing your disability pay permanently, that might be the best route to go.

It's a decision you'll have to make for yourself and I know it's a hard one.

Sending warm healing thoughts,
Donna

[Alijon]

I struggled with the work decision for years - 15ys to be exact. I'd feel better, seek employment, and the ic or the ibs would bounce me right back home again. For me, trying to deal with highly personal and sometimes embarrasing aspects of both disorders in a public place was just too hard. Trying to always offer some sort of respectable reasoning for why I had to leave yet one more time became impossible (and unbelievable). And I always felt remorse for having involved my employer in all of my concerns when I knew in my heart that he could've hired a healthy person and not had to deal with the aggrevations I brought.

I've even tried as recently as last yr - hard-headed woman that I am - but I suppose that last attempt knocked the ball home for me. I finally accepted that gainful employment is simply not ever going to be a part of my life. I don't really want it anymore anyway. I have volunteered over the years in a variety of capacities. That seemed to always work out just fine. But since I haven't been getting the remissive periods I used to get. I've had to re-define the expectations and dreams I had for my life. I am mouring the loss of my dreams and I have to come up with a new vision for my life. That is no easy task. It took 40yrs to get here. Funny how life turns out isn't it? You just never know what you're going to get.

[MakinIT]

Thank you all for replying...First VM...Please don't worry...we are in America after all and I believe we are still free to worship as we please and not have to feel like we need to hide or apologize for it. I very much appreciate the compassion and caring. That means more to me than anything else.

As far as all else...all bets are off on work. I've been doing the roller coaster which is why I have been remiss in replying. My mood has been awful. The job opened up for me, the door was open for me to walk right back into....But, like Alijon said, I had this internal fight about fairness to not only my employer but my kids. i was sick during my 10 years of teaching and lost alot of time. On top of that, I had two more really nasty episodes.

My LTD co is on my butt and trying to find a way to throw me off....put a new claim rep on my case so she's on me like white on rice. Sent me 9 forms in 5 days to fill out. Plus 1 more for my main doc, he and I filled it out together and he was quite firm DX #! :IC + severe pelvic adhesions that require very high levels of narcotic pain relief and, at times, med. MJ. (legal here but I use very seldom...but it's actually better on your liver and kidneys..) DX 2: Migraines, controlled to 1x per week, by shot and type 2 diabetes. (they don't care about the diabetes) Then he wrote he couldn't see me returning to work anytime in the next year. They want me to empty my TRS account (teacher retirement) my IRA (for kids college) and trying to figure my social security RETIREMENT. I'm 41. I'm not able to retire till 67. What the F..... Oh...and they never give a C.O.L.A. Right now it pays more than SSD. it would take in the SSD amount and deduct it from what they pay me and pay me the difference. But they, and my lawyers, get all my back SSD. The dependent SSD, my lawyer gets 25% of but LTD won't take. They will only count up front so all that (be about 300 X 50 months) will go into their college fund.

I JUST DONT LIKE BEING A WART ON THE FAMILY BUTT. nice analogy but that's how I feel somedays. Especially when my husband makes sure to point out that we are 800 dollars less next year because I'm not working and he made plans based on me working. (He's ok, he's just very stressed)

Anyway, Thank you all again...