Need life advice - very personal

sauceman

New member
Hi, I am a 22 year old male, dx with CF at 22 months - failure to thrive/rectal prolapse. I also have anxiety, ADHD, depression, and recurring suicidal thoughts.
I take pancreatic enzymes, afflicted with pseudomonas when I was 14. I'm somewhat negligent at doing any sort of treatment, I have a Vest machine, but it's been a couple years since I've used it.
I attended university college and quit going midway into 4th semester in the Civil Engineering program due to chronic pain issue that doctors have not resolved. I currently take 50-100mg tramadol daily, doctors said there is a submucousal mass located in my colon. I received a laparoscopic endoscopic surgery this recent summer, however it did not alleviate any pain. Further tests performed yielded almost no answers. I have somewhat given up on hope of my chronic pain being resolved.

I currently live with my disabled obese father w/ Multiple sclerosis and neuropathy. Growing up was difficult, my father can be extremely verbally abusive at times and drank very heavily (hasn't touched alcohol in a couple years due to severe health issues). My mother abandoned my family when I was 8 years old. I have been smoking marijuana for 2 years now, but have been trying to cut back on it. It seems I can't run away from it however because my father is a heavy marijuana smoker and relies on me to go out and get it for him regardless that it's illegal in my state (Minnesota). He claims that it's the only thing that gives him a break from his health issues even though doctors prescribe him adequate amounts of tramadol to relieve his pain. Surprisingly my lungs are somewhat healthy, I don't recall ever having any lung infections and doctors constantly tell me my lungs sound very clear when I get a basic lung checkup. However I do cough up sticky green mucous regularly.

I have somewhat of a bad criminal past, got caught up with the wrong kids growing up and got involved with a few vandalism events. When I was 18-19 I started thieving from walmart simply for the rush of doing so (subtle hate towards walmart as well), it helped me get out my frustrations in life. I ended up with 2 misdemeanors for petty theft, quit thieving entirely since then.

I am an active musician, can play many instruments, formed a metal band 2 years ago, currently the lead guitarist. We perform every other week or so, have a full album of music written and recorded.

However I feel like this lifestyle isn't bringing me to where I wish I could be, there is almost no income generated from my music. When I try to get a job, employers don't want to hire me because of my criminal background. I have tried applying for SSDI, but recently received rejection notice.

The fork in my road is whether or not I should try to pursue going back to college, or settle with the college experience I have and continuously look for employment somewhere (seems hopeless at times), or if I should keep reapplying for SSDI. At the moment my health insurance is state paid, covers all my medical costs, if I have an income of more than $622, then I lose my insurance and will be stuck fending for myself entirely on medical costs. My student loan and credit card debts currently owed are around $16k and I have debt collectors barking at me constantly. Most days I feel completely useless and crippled by pain, depression. My anxiety keeps me from seeking out professional advice, not sure where to even look for advice. I want to move out from home because my relationship with my father is very hard to deal with. But it seems near impossible given that I need to find a job that covers all my health insurance needs and have enough money left over to pay for rent/food/etc. I feel like I'm stuck in a hole that I can't get out of. I'm not looking for a solid answer, just need honest opinions on what to do with my life. Very much appreciated to anyone that sheds some light.
 

Twistofchaos

New member
Link to your band's music please!

Would first focus on finding a way to get out of living directly with your father because that doesn't sound healthy at all. Not breaking the connection just getting out of there and focus on yourself. If you have the opportunity to go back to college then maybe that's a good way and give you time and opportunity to figure out where to go next.
 

nocode

New member
Hey buddy, I can certainly relate to the negative/ destructive lifestyle which is now part of my past. I am a 29 year old female and have been living abroad for many years, against all odds because of cf. In the past, being destructive and not caring much about my health was the only way I knew how to deal with the pain. Then I realized that I would only be "happy" if I took care of myself, my health and generally trying to become a better person.

It sounds like you are able to work, from a physical perspective. I think being independent would be good for you. Your dad sounds like a bad influence to be around during this time of your life.
I am not in the US so it´s hard for me to comprehend your health system and how it differs from state to state, so I cannot advise further because if working means that you´ll be stripped of your medical insurance coverage then I wanna say health is more important. But I also understand that not working and feeling useless can be very detrimental to your mental health, like it was to mine.

I am sorry you´re going through all that but just the fact that you have posted this here shows willingness to get your life on a better track.

Good luck.
 

nocode

New member
Ah, I also get dopey regularly (love the appetite it gives me) but I never smoke it. Please consider that even though your lungs are not too bad now, in time, smoking will only make them worse. I always cook it in butter and mix it with different things. Some of my usual choices are dopey pancakes, dopey soup, dopey cakes...hmmmm. I have to wait an hour for it to work, but it definitely beats the harm it would do to my lungs.

Sorry if this sounds "preachy", it´s not my intention. Just trying to offer my perspective and some ideas.
 

Aboveallislove

Super Moderator
A few thoughts:
1) It is hard for me to tell from your note whether you are able to work and/or attend school. It seems like you think you are but then also mention the pain. It sounds like you have lots of GI issues and maybe need a different doctor to attempt to get treatments.
2) Marijuana is illegal and you and not your father will be the one charged with the offense if you are caught purchasing it and that will lead to another addition to your record and more difficulties.
3) I assume you have some insurance from what you said. Ask your doctor for a referal to a psychologistic or psychiatrist. It sounds like you need help working through some of life that sucked and was beyond your control.
4) But you also have control now for what you do and don't do. I couldn't tell from your email if your insurance is through your father? If you have any other living options, etc.? Going AWAY to school would be a good escape hatch IF you are healthy enough to stay in school and then work. I'd suggest you work with a social worker (again getting a referral from doctor) to plan a move-out, get life in order plan. It will be hard b/c you've never had to do it and you had horrible role models. But that you posted here shows you know you can.
Good luck!
 

sauceman

New member
Thanks for the advice guys, to twistofchaos, here's my band's reverbnation page: http://www.reverbnation.com/reverenceofapostasy

I will definitely pursue going back to college, I think I might be able to pull off attending classes again if I just limit the amount of credits I take per semester. I just needed some motivation from others to kick my own ass back into doing something. My current problem with my GI seems to be unsolvable, mostly due to there not being any specialized CF centers within my area or covered under my current insurance policy. My current health insurance is under my name. The health attention I receive is sub-par at best, but I will continue approaching the docs until they can get me the solution I need.

I currently do not work aside from doing my music. Hauling gear, performing, it does however leave me feeling extremely exhausted which requires a couple days for me to recoup. The last real job I had, I was almost fired from because I spent a lot of time in the bathroom, lousy boss.
 
can you apply with disabilty? are there any extra help programs in your state? I think you can persue any dream you want. the tricky thing is balancing out everything. have you tried college online? this way you can do treatments and go to college.
 

Tisha

New member
Music has always been an important comfort in my life. Also doing things that I love, being out in nature, watching movies... Hang in there! And try to find a reason to live. That certainly helps.
 

lilmac1177

New member
i didn't quite understand from your initial post ... have you only applied for SSDI once? if so, keep in mind that most generally a person is always denied the first time! try again.

i agree w/ trying to get set up w/ a psychiatrist as I've also been diagnosed w/ depression and anxiety and it's done wonders for me! my first issue w/ it was in 2007, and was a horrible year where i was admitted twice (it was scary being the first i was even aware i was having problems), but i believe because i got help immediately i avoided what could have otherwise been devastating. admittedly, the hospitalization did help, in addition to a combination of medications that work for me.
 

Blue

New member
I worked the CF Legal hotline (800-622-0385) to get disability benefits. If you qualify for disability (which they will help determine), there assistance getting disability benefits is free to you. It's great resource. Also look at cff.org for more programs and benefits and may also help with finding another CF Center to diagnose your GI issues.

It's really hard to give advise in situations like this, but things sound incredibly challenging for you right now! I would just encourage you to try and determine things/areas that YOU feel are unhealthy and that you CAN change, and begin there.

I'm working on figuring out what healthy boundaries are with my own parents. It's very challenging to recognize and set healthy boundaries with your parents. I've been encouraged to buy a book called Boundaries (search for it on Amazon). It may help you (and I).

Try to just make one good/healthy decision each day or week so you don't get overwhelmed...
 

rmotion

New member
yeah this disease sucks
when i was 18 i was mad at the world too. wanted to end it and did not care about taking care of my self
now i am 42 still fighting and still dealing with stuff with one difference.
i made the decision i wanted to live and keep going. without that first step everything else is moot.
decide if you want to take care of yourself first, then do what you can to do so.
that first step will open other decisions that are in the right direction.
1. ssdi is if you have 5 years of employment - do you mean ssi which is alot less. can you work 5 years then get ssdi then go back to school or play music. if you are somewhat healthy then try to work and take care of yourself, you'll feel better mentally.
2. we all dont want to be responsible for our lives we make bad decisions and that leads to more bad decisions. make a different one then.
your dads issues are probably legit, it probably helps him just try to stay out of trouble. find him someone else to deliver etc.
3. you are young enough to make it to see a benefit with these new drugs coming out. what is going to be available in 2-5 years then in 10 or later. who knows.
4. you have to take care of your self nutritionally and medically that is the only option, if you agree to decide to go forward. right now you are not taking care of yourself mentallly. it is hard i know. good luck
 

anien2

New member
Just a little tip about marijuana. If you need to take it you dont have to smoke it necessarily. You can always make it powder and put it in any kind of chocolate cake or similar. You are going to get just as high, may take a few minutes, and it wont damage your lungs (or not as much as smoked).

It is not the kind of advise that you give to your kids, but maybe it can help you a little.

It is not something that I have done, of course. A friend of a friend of mine told me once that he saw somebody doing it...
 
E

entropy

Guest
it takes a lot of guts to come out about your past, specifically regarding your drug use and criminal history. lots of people are very judgmental about such things.

i'm also 22, and have had a lot of problems with depression, not taking care of myself, suicidal thoughts, drug use, etc. i understand what you're going through.

i used to smoke weed all the time, for 5 or 6 years, every day, all day. i don't anymore, and i do my treatments for the most part. i feel if your pain is "controlled" with proper medications, you will probably not "need" to smoke weed anymore. it's really the worst way for a CF'er to use drugs, i.e. smoking drugs. eating weed is an option, but it can be prohibitively expensive.

you obviously suffer from genetic predisposition to drug abuse/addiction, depression, etc. or at least i would assume so, seeing as your dad was an abusive alcoholic, and now you are having your own issues regarding drug abuse. having CF only compounds a person's inherited predisposition to be depressed and/or abuse drugs. hell, i think not having *some* sort of depression/anxiety is not normal for a person with CF, even if they aren't genetically predisposed to such things. we have a lot more on our plate than the average person, especially us young CF'ers. we have to juggle a lot, and it's overwhelming.

i had the same issue with chronic pain. i broke my back in 2010, after passing out from having a pulmonary embolism (i still don't know how i broke my back, no memory of it). before that, i was buying opioids off the street to self medicate feelings of depression and low self esteem. smoking weed also.

i found a doctor to treat my pain issues, and now my life is a lot better. opioids not only make me feel better emotionally and mentally, but also physically. i have energy, i can sleep well, i don't get short of breath walking around, etc. the only thing is, i'm sure you know the addictive nature of these drugs, and it's very hard to control your intake if you have a tendency to abuse drugs. this can lead to running out early, withdrawal, rapid weight loss, hospitalizations, pneumonia, etc. i've been there. withdrawing from opioids when your body is already weakened by CF is dangerous.

many doctors don't view CF as a "chronic pain" illness. but CF specialists are becoming more aware that CF is indeed an illness which is often associated with chronic pain. especially as the disease progresses. what are your PFTs? if you want to get into pain management, you need to have some kind of legitimate reason. you can't just go in there saying "this hurts, give me narcotics please." if you can get a doctor to refer you to pain management, there are some things you could print out to show to the doctor regarding CF and chronic pain. just google "CF chronic pain" and you'll see what i'm talking about. maybe you'll get lucky and he'll treat you with compassion and prescribe you what's needed. the DEA is making it much harder for doctors to prescribe narcotics, and doctors seem to be especially wary of prescribing to people who aren't old. i'm lucky in that regard. my doctor knows my history, and he treats me with compassion. in fact, he writes me a more generous script than most of his geezer (sorry, geriatric) patients.

do you have a girlfriend (or boyfriend, whatever)? that would also greatly help to alleviate your depression.

i wish you the best of luck. we have a lot in common.
 
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