How did you set up on your own as an adult?

[anonymous]

We've got college-age CFers in our family. One without many exacerbations. Another with many.

How did you set up on your own?
Do you have your own apartment, share one?
Do your parents still help with your treatments at all?
Do you go back to your parents when you need IV antibiotics?
Do you earn your own monies or get disability-income?

I would so love to see them both independent - knowing the pride and pleasure of not <i>having</i> to rely on mom and dad, but just asking for thier support sometimes because they want to. Still it's hard to "see".

I can hear that some of you have managed this and would love to know how you did it.

Thanks.

 

[Landy]

When I moved out on my own, I kind of stumbled into a perfect situation. Three girls were looking for a 4th to rent a 4 bedroom home and each of us would pay $100 each a month for rent and we also would split the utilities (mind you, this was in 1984, rent is probably much higher now for a 4BR house!). I got my first job as a waitress and had the time of my life with the 3 girls. Eventually I went to fewer roomies & finally an appt of my own when I got a better paying office job.
I had mild CF back then so I didn't have to have IV's, etc and I just went to my CF appts on my own, which was weird the first couple of times, then it was no big deal.
Once in a while I still call my parents though when I have to do home IV's or when I need to go to the doctor and don't feel like driving myself and my husband can't take off work, etc
I hope it works for both of your kids to be on their own, I bet they would enjoy it.

 

[thelizardqueen]

When I first moved out of my mum's place, I lived with a relative for a while, my ex, and then my grandparents. When I finally decided to actually get my own place, I decided that I didn't want roommates, and so rented my own place downtown. My parents didn't help with my treatments at all, because they live out of the city, but when I was really sick my mum would come and stay with me for a bit. I've been lucky that I haven't needed IV treatments, but when I eventually do I'll be doing home IVs as I live with my boyfriend now. Whenever I was sick enough with something (kidney infection, or my embolization), I would stay in hospital by myself. I also worked full time for 4 straight years, so was able to support myself. At the moment I was on medical leave and had employment insurance. I've always been very independant.

 

[cdale613]

I don't have many exacerbations, and have been able to transition out of my parents "sphere of influence" - not that this was a bad thing- their help made it possible for me to take those first steps like going to college, etc... dumping all of the insurance crap on me all at once right after high school would have been very difficult for me, and I probably would have done a bad job of it.

Looking back, I think it kind of went in steps...

While I was at college, which was 4 hours away from my parents, my parents were still very involved with my care, mostly because I was still under their health insurance. Example - my drugs were still mailed to my parents house, so they knew when to call for refills. They also fought all the insurance/preauthorization battles, etc. Ever since high school, I was responsible for doing my own treatments, with the exception of Chest PT, which my dad did with me. There was never any issue with me not doing them - I understood pretty early on that there wasn't a whole lot of choice behind doing them.

When I moved away to grad school - 9 hours from my parents, I dealt with all my drug/refill stuff, because I was so far away that they had to be delivered to me - parents still dealt with insurance crap. I shared an apartment with a friend from college who was a few years older than me... I lived on student loans, and very little else... all income from my part-time job went to tuition/expenses.

After grad school, I moved to Boston, got a job, moved into a house with 4 virtual strangers, and took over my stuff entirely... I have my own health insurance, and fight those battles now; I set up my own appointments, picked my own clinic (being in Boston I had the luxury of choices), etc. I consider myself fully independent.

When I need IV's, I do them myself, at home... I had my last one placed in outpatient, and went to work the next day - in the two week course of IV's, I missed 6 hours of work due to the weekly checkups... my home healthcare service drew all my lab work at night, and I was able to infuse in my office.


My parents did a few things while I was younger that set me up well for the future:

1) When I was 14, my mom and dad got a whole-life insurance policy in my name. Because of my age, and the policy they picked, I didn't need a medical exam. It would be virtually impossible for me to get life insurance today, especially at the price they got it. I now pay all of my premiums, etc.

2) Included me on at least some of the insurance issue stuff... by the time it came my turn to deal with it, I knew how to talk to the the companies, who to call, how to get claims resubmitted, etc.

3) Made complying with my treatments as easy for me as possible -- looking back, the fact that I didn't have to deal with refills, prior authorizations, etc., and just had to focus on doing my meds, made CF far less burdensome while I was in college, living in the dorms, and trying to be "as normal as possible."

4) My parents made me very aware of the importance of health insurance, and as a result, I chose to go directly to grad school right after undergrad - my parents' insurance covered me until age 25 as long as I was a full time student. I wanted to get my Masters while I was still covered, and was healthy enough to go to school full time and work 20 hours a week. It was demanding, but looking back, its how I got the job I have now, which has AMAZING benefits.

I hope this helps with your transitions...

Chris
25 w.CF

 

[NoExcuses]

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[kybert]

hmm i was going to answer these questions then i realised that even though i live on my own i havent really 'set up' on my own at all. i am still say 75% reliant on my parents and always will be to some degree. in fact, i will probably have to move back home soon because of money problems. my ex partner has finally moved out and i simply cannot afford to live away from home with my measly disability pension.

 

[anonymous]

Well, my experience was pretty good in most senses...

My first time moving out of my parents' house when I was like 20, I moved into an apartment about 3 blocks away! It was perfect and a great was to transition... I must admit, I was home for most meals, and when I couldn't sleep, cause my cousin (my roomie who was out late drinking most nights), I'd often even crash at home. It was great, cause I was thinking "independent", yet I still had many ties to home life. I took my laundry there, did homework there (when I needed help or needed to get away from roomie), etc.

As far as treatments, I had the vest, so did all my treatments on my own, as I had done this for several years already.

After I was married, hubby and I moved 3000 miles away and that was the big test, but it really went fine... I was already pretty independent from living with roomies for a couple years (though still coming home for most things). I did (and still do) meet up with my mom whenever I need IV's in whichever city we're living in at the time. She is a nurse and helps me do home health and keep me motivated when I'm "sick".... that REALLY helps! I've only done about 1 week without her, and I could do it, but its MUCH easier having her fly and be by my side the whole time. I guess we always need our parents, don't we? <img src="i/expressions/face-icon-small-smile.gif" border="0">

Sonia

 

[anonymous]

Oh, and I did work part time and go to school the whole time I lived in apartments. I made enough to pay rent and for food, but that was about all. I didn't ask my parents for much, cause they didn't have too much money at the time either, and I'm sure they would have just felt bad had I asked and they couldn't help.

I continued for my Master's degree once I was married and living 3000 miles away, and worked for a bit, but started getting VERY run down, so I was blessed to have a husband that doesn't mind if my full-time job is taking care of myself. So, that's what I do now.

Sonia

 

[luke]

my story isn't quite so heart warming....

My brother and I were "kicked out" of our house when I was a senior in highschool. We began living in a camping trailer but ended up in 2 bedroom low income apt. with 2 other guys(4 total). I was working at hardees to help pay the bills, I was already accepted into college so once I was able I moved into the dorms later that year. My parents divorced when I was young but I was still covered by my dad's insurance so I had that. I applied for disability and waited to see. I ended up moving out of the dorms, (another story) and lived with my girlfriend at the time(my ex wife). I did recieve my disbabilty and with public assistance, food stamps and medicaid I made it through college. I didn't have any help or support from anyone but uncle sam.

I would have loved to have good supportive parents...but I didn't. I guess my point is life gets rough but you can make it through. Good family just makes it easier.

For the record...I feel mine is a success story so without "bragging" about my accomplishments I am confident to say that I turned out just fine without help from anyone but the gov't.

Luke

 

[NoExcuses]

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[CowTown]

I know for myself as well, being independent has always been a HUGE deal to me. Since I was little I could never wait until I was out of the house, paying my own way, not answering to anyone, living my own life. Freedom is still one of the biggest things for me.

How did you set up on your own?
During college I live at my mom's, but had crazy hours so my life was pretty much independent. It was a good time for me. After college I moved to the beach with 2 friends and it was a really great time, and really good for me to have finally moved out of the house. About time. I started to work for myself right after college and the income was fine and shaky at times, but I made it work. After 2 years I was getting run down and a little sick, couldn't keep up with bills b/c I was not feeling so well, and the stress was building so I moved back to mom's house and focused on getting better. After that year being "back", I moved out again for a 6 month time and it was super! I ran on the beach almost everyday, got in shape and took really good care of myself. Then I met my husband, we moved out together........

Do your parents still help with your treatments at all?
I think the last time my mom helped me with my treatments, I might have been in like 5th grade or something. I always wanted to do everything on my own, and it wasn't a problem for me to do so.

Do you go back to your parents when you need IV antibiotics?
I have never had to do home IVs while living alone. It is very nice to have someone around just in case something might go awall.

Do you earn your own monies or get disability-income?
I have always earned my own money with of course occasional help from my mom when I needed it. For me there has always an extra stress about having enough extra cash in my account for those times when I have to go in the hospital and have down time to get better without working. Always, when I know the money is in the account, the stress factor goes away completely for me. Money can be so evil, especially when you're sick!

 

[luke]

Amy,

I have sent you private message giving you the password to my photobucket account. I have re activated my supersized "picture" through my profile. If you can fix it so it wouldn't be so large that would be great.


thanks

 

[NoExcuses]

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[S]

you can also resize pics right in photobucket, just click on "edit" above the pic, go down to "resize picture" and chose either 75%, 50%, or 25% of original.

 

[S]

as for my living situation:

i have pretty much lived with one of my parents so far in life. living in newport beach on a disability check would be impossible. a studio apartment runs $1000 a month. the condo i live in that my dad owns is worth about $900,000 right now, he bought it 4 years ago for $400,000...it's just plain RIDICULOUS here! currently he lives with his fiance up in another city nearby and uses the place i live as an office, he'a a real estate developer. so my girlfriend and i live here along with our newborn daughter rent free so far...works out perfectly cuz he just writes off the mortgage payment as an expense for office rent. i also work for him doing all the billing, answering phones, etc. right outta my downstairs, so it really is an ideal situation...and under the table so far. he's only here for an hour or so once or twice a week so we have all the privacy we need. without help form my parents cf would have taken me long, long ago!


I have been in charge of treatments for at least the past 10 years, once I turned 18 I decided that it was time for me to take charge and be responsible for them. I am in the hospital 3-4 times a year and usually come home on i.v.'s after a few days in...let me tell you, the i.v. schedule has really prepared me for the baby schedule, basically no sleep with either!

I am currently on disability. One thing that irked me about the amount I get, $640/month, is that I could never work full time due to my health, so the amount I was able to get based on work experience once declared disabled is probably half of what it could have been. I just started thinking about this recently and figure it's too late to appeal 5 years into receiving benefits. Anyone else have any experience with that or have any stories of explaining to them that the amount of money you were able to make was based on working while sick and that you couldn't work full time, hence lowering your benefits? Anyone think I could explain this to them and possibly get more at this point? I have an appointment on monday to see if my daughter is eligible for any money through my disability.

 

[JazzysMom]

I have not been TOTALLY on my own for any more than a year. When I graduated high school, I went straight to work & my Mom moved to Arizona for 4 years. Before leaving she made sure I had a descent place to live & bought me a new washer/dryer. I had the old family car that was in good shape which I was driving. That was it. I had no health insurance until eligible for my own at my job. I switched jobs 2 times during the time my Mom lived in AZ & except for that first year, I lived with someone. I also financed my first vehicle on my own. I lived with someone until my first husband & I split up & I had my own place again. I was by myself for about 6 months before having a new roomy. Then I met my current husband & we moved in together. During this time my Mom might throw $$$ at me for various things, but I supported myself & definitely helped in my share when in a relationship often carirying the health insurance. At that time it was no big deal because my health was easily handled even when not doing my treatments. As I got older it became harder. I have no doubt that I could still manage if I needed to, but it would be much harder especially now that I have my daughter.

 

[catboogie]

it seems like you have a good attitude: you want your family members to be independent, yet you also want them to know you are there for them when they need you. that is the kind of environment where someone with cf can flourish, i think.

i have lived alone or with boyfriends (gosh, that sounds bad!) the entire time since i moved away from home. i never wanted roomates b/c i prefer to have privacy when doing my treatments and stuff. after i lived alone i actually got more and more diligent about taking care of myself.

my parents don't help with treatments (i use the flutter.) but they do help with my bills. my dad sends me a little money each month and my mom will help on request.

when i have been on IVs (not that often in the last few years) i have usually had a family member come stay with me for part of the time. (they all had to come from out of town.) it mostly depends on how i'm feeling. i am pretty independant, though, and don't like to ask for help unless i really need it.

i earn my own money and also get some help from my family and boyfriend. i have never been on disability. i might could qualify if i had a full time job, let myself get run down for a year b/c i didn't have time for all my treatment and exercise and sleep. but instead i work a 3/4 time job, which gives me time to take care of myself and earn enough to get by. i do have a state insurance program which requires me to make less than poverty level to keep on it. but it pays for basically everything.

hope this helps.

laura, 27