Signed up for moral support

[mneilsen2084]

signed up for moral support



So.. My name is Melissa Neilsen, I am 25 and have been married, had a child, lost the marriage and child. Then the year after the loss of my child was diagnosed with crohn's disease.
My specialist in Washington told me that I had mostly likely developed it when I was 15. So far I have tried asacol, prednizone, and every other medication my doctor is willing to prescribe that will also be paid for my Medicaid. Every treatment I tried made me more sick.
I have been off of all meds for about a year and a half now, but am very limited in where I can go and what I can do.
None of my family or friends are understanding at all. In fact, I only talk to a few people at all now. I have been alienated by this horrible disease.
I am trying to get a degree in Information Technology but wonder if I will even be able to work ever again.
I have been so depressed lately because of this lame illness that I just don't know what to do. I talk to my therapist about it, but have not seen my doctor since the last time he prescribed meds that were not covered by my insurance. He knows my income/bills ratio, but still prescribed meds that I never got to take. :-(
ne whoo I am just trying to have some support and hopefully meat some people with the same illness as mine. Thanks for the read. God bless.

 

[butt-eze]

This isn't easy for anyone. I think that you will gain support by educating your family about this disease. Try sending them an email link that describes how truly debilitating this is and how there is very little that someone can do besides cross their fingers and hope things get better. It took some people in my life a long time to finally get it. A few hospitlizations did the trick. Now they are over-protective.

Please talk to your doctor about getting samples. The drug reps drop off samples like it's going out of style. These should go to people who need them; not those of us who have private insurance can get them for cheaper.

Things do improve and will. Try getting involved in your local CCFA chapter. Meeting people with your disease helps-a lot!

This forum also helps

Please keep us updated on your situation.

Sincerely,

Amy

 

[mneilsen2084]

Thank you Amy, I will ask my specialist about samples at our next appointment. I haven't seen my specialist in almost a year and a half because I got sick of being sicker from the meds. This was not logical but felt good for a bit. Over the past few weeks I have realized I need to start seeing him again even if there aren't new things I can try yet. While I had the money I was using a special blend vitamin from vitamins.com but they are about 70 dollars each time I need more. I recently had to move into my own place because my roommate was making my symptoms worse by yelling and throwing stuff all the time. Now I cannot really afford any special needs items for this illness. Pro-biotics provide some relief, but they too are expensive (non-dairy ones).
I literally cried when reading your message. It is nice to get some positive feedback.
My blood-family was very mentally and physically abusive to me as a child, so I do not talk to most of them. I do talk to my dad but sadly he is an alcoholic who used to molest me, so I do not get a whole lot of positive feedback from him in regard to this illness.
I have an adopted brother who is married, but they did their own research on the illness. Since his wife was able to find people who live and function almost normally, they decided that I am just exasperating my issues, and that I use the illness as an excuse to not go out and do to many things. Like long road trips and drives to places without bathrooms near by. :confused2:
I used to have a rather large friend base, but even that has dwindled greatly since I got sick.
It is almost as though I might as well have a communicable illness. People tend to avoid me as though I do when they find out how sick I am. oo:Then when I don't tell people about having crohn's they think I am nuts for living the way I do.
That is why I am looking for other options of moral support.
I got to college online at the University of Phoenix and manage to have a GPA of 3.84, but even that is criticized because it is online. Many people do not seem to want to understand living with this disease and it makes me very very depressed.
People and family is what I always lived for.
I have been in therapy on and off since I was 13, and have been on over 30 different mental medications in that time. Finally I realized that no meds for my mental issues was best. I have been mental med free for almost three years.
That is probably part of why I thought I could go completely med free. I just don't see the point in taking pills/medications that make me feel worse.
Do you know if it is common for crohn's medications to make people feel worse? Prednizone made my chest feel tight like I couldn't breath and gave me a rash. Asacol made me bleed internally, and the other things that were tried just didn't help.
Correction, there was one pill that somewhat helped with the symptoms which was dycylomene (probably not correct spelling) but that tended to stuff my guts up which in the end causes more pain.
Ne ways, thank you for letting me vent and listening. I really really needed it tonight.

 

[Nicole]

:welcome: Melissa,

I'm really sorry to know that you're having such a hard time finding the right treatment and settling down.

If support and understand are what you're looking for, you've come to the right place.
We have all, at some time in our experience with this disease, felt alone so we can relate. The folks here have a wealth of experience and can give construction input on any topic. So, come to the forum and let's work it out together.

Amy is right. It is imperative that your loved ones understand the physical, psychological and emotional effects this disease have on its victims:ybatty:. There's a lot of information on-line educating the general public about IBD, many of which speak directly to the families of the patient.
Maybe if you invite a member of your family or friend to one of your doctor visits it may help them to understand the severity of this illness.

Remember, stress is a negative factor in this type of condition so try not to worry too much. I'm confident things will begin to look up soon.

 

[mneilsen2084]

Thank you Nicole,
That is excellent advice of taking a family/friend to my appointment.

I am so thankful right now that I found this discussion forum and can be a part of it. for me it is a light shining into the darkness.

 

[David in Seattle]

Melissa - The details of what you have had to endure are heartbreaking. You WILL find the most empathetic, kind people imaginable here. Always remember, you are the VICTIM of a disease, and of life circumstances which are not your fault. AT ALL! It is very unfortunate that you are surrounded by such unsympathetic people. I agree that you should try to educate them, and perhaps bring one of the more open individuals to your next appointment. In the meantime, try contacting CCFA'S Northwest Chapter

Unfortunately, many people are simply incapable of appreciating something which they have not experienced themselves. It sounds like it may be time to reach out and make contacts with some who can. Coming here is a good beginning. Contacting CCFA will be an excellent next step.

Congratulations on how well you are doing in school!

You are not alone!

 

[Guest]

hi Melissa and welcome to the family

aw honey you have been through so much! i have to give kudos to you for still maintaining hope and determination, despite all the knockbacks life has thrown at you.

i hope that joining here is a turning point for you - there is so much help and information here, if you just spend the time reading through past threads, and asking for specific advice.

reading between the lines, it seems to me you have a serious lack of a people support system. everything is so much worse when we're facing it alone - and Crohn's is no exception. two people can have exactly the same diagnosis and symptoms, yet their coping mechanisms can be totally different, depending on the support they get..

i have a few suggestions and thoughts.. first of all, have you altered your diet to fit in with your Crohn's? wrong foods for us can be a biggie in making symptoms worse, and giving the knock-on effect of making us feel worse overall... also, i think you should definitely see your specialist again, being under the care of someone professional when we have a condition like Crohn's is very important, and even if they're not prescribing, just knowing they are there is reassurance.

i wondered if you'd be willing to research local facilities to where you live, like maybe a church organisation or other facility where there may be support workers, and maybe you could give something back by doing voluntary work? i just think it would be good for you to get out there and make some friends, and at the same time, get some help.

regarding meds.. there is something called LDN, (Low Dose Naltrexone), which has in trials shown to be effective for Crohn's.... but it's often really hard to get hold of - might be worth asking your specialist about this one - there are no nasty side effects.

i'm glad you joined us, Melissa, and i hope you get a lot out of this forum

 

[cins]

Hi there,
It's really upsetting to hear your story. Your family may not understand what you are going through. But we do. I decided that i did not want to take and steriods until the situation got really bad. So i'm on pentasa at the moment and it feels like i god send. It hasn't affected my stomach in any bad way whatsoever. It's got one of the least side affects. it's been compared to ' like taking asprin'.

You need to remember that stress affects our situation and makes it majorly worse. If your family doesn't believe you then you do what needs to be done to get yourself better. For one if you think this specialist isn't helping find another one. There are specialists who really care about the patient and can help you get the right medication. Your specialist doesn't seem to be listening to you well enough.

Remember you are incharge of your body. Doctors don't know how you feel exactly. You do what you need to feel better. I have and even if i offend people i don't care anymore. I am feeling better after 7 years. People repect you more if you stand up for what you need.

Wishing you all the best in the world

 

[ChefShazzy]

Hi Melissa. I am glad you found the forum! It is a great place for support, especially if you feel isolated and alone... a lot of us have gone through similar things. I'm so sorry your family is not understanding...

I was diagnosed with CD just before my 25th birthday; I was 26 when my husband and I separated because of the stress my new illness put us under. It was the most miserable time of my life, I had lost all my friends, my family. I had no one - only my dog, and a job which I wasn't sure if I could keep. I was thisclose to losing my house. I had dreamed of trips and a family and all those married-couple things but all of a sudden it was all gone.

When I was hospitalized, there was no one to come visit, no one for the doctors to call. I was isolated and withdrawing more and more - it got very scary. I'd struggled with depression even before my diagnosis, so I had a bit of a background on how I could deal with illness and loss. I joined the forum when I had no one else to talk to, and it has proved to be one of the most helpful things. At first, I just sat back and read everyone's posts... When I felt more comfortable, I jumped in and started posting. Anyways, I don't mean to yak on and on about myself - I just wanted to share that I can relate to some of what you've been through. Now, two years later, I'm nearly divorced (official on June 3!), and have a small support system and still have bad days - but overall looking forward to the future now.

I'm in Canada, so I don't really know how things work in the states... Are there local support groups or organizations to be involved with? I was able to access some free counselling through my family doctor and pick my life back up again... You have to grieve your old life but also prepare yourself for your new one... It's a process but entirely possible. You're off to a good start by being here. Have you considered volunteering when you feel well? That's a good way to start interacting with more people, and give yourself a bit of a boost.

What kind of dog do you have? That is fantastic that you are pursuing an education! Don't bother with what everyone else thinks and be concerned about their approval - do what makes YOU happy and focus on the things you CAN do. Sounds like you've done some research about diet and are watching the things you eat - that is a valuable thing to do for yourself. We're here if you need to vent anytime.

 

[Regular Joe]

Hi Melissa,

First let me talk about the disease. Crohn's disease is not a simple disease with simple, across-the-board remedies for symptoms. This disease has no cure, so it's one of those things you or me can't change.

There is only a single thing in life you or me can change...that is attitude. My attitude is this with Crohn's disease: I don't have an incurable life-long illness. I only have Crohn's disease for the next 24 hours. I only have Crohn's disease today, while I'm awake. I know I can make it through the next 24 hours because I've been doing that with a Crohn's flare for a year so far.

There is a place where many of us reach called acceptance. I know what I can't change, so it won't do me a single ounce of good, I won't find a lick of healing at all, if I think I can change Crohn's disease or my diagnosis - even my symptoms. But there is something more important to me involving this disease and my attitude.

I have to live within my physical limitations. Some of my mental limitations are also unchangeable, but there are so many mental limitations that I can change. The biggest one involves asking myself a question: Am I a slave? Or am I a master? I made a decision that I would rather be a master than a slave.

What I'm saying is this: You have a choice. You can either let Crohn's Disease define you, then you become the slave. Or you choose to let your soul and the stronger good within you define Melissa, and you take charge of your disease and become the master. You don't have to become "Crohn's Disease". You can become Melissa instead, and use the strength within you to tame the "monster under your bed". Most of the time, the scary monster under the bed is not so big and scary when you turn the lights on and drag him into the light.

Crohn's Disease will give you clinical depression as a symptom, even if you've never had it before. If you've had depression and been treated for it before, you are more inclined to become depressed again - that's a clinical fact. I say "you", but I'm talking about myself. too. I was treated for clinical depression for 4 years with Celexa. When that cloud of depression lifted, by God, I was never going to let depression back into my life if I could help it.

I have probably a day or two of clinical depression a month. I know it is part of my Crohn's Disease flare, so I live through it. For me it doesn't last more than a day. Don't get me wrong, there are many days I wake up and feel bad or sad or lonely, and I don't want to face anyone or anything, but I've learned to put one foot in front of the other and walk forward into the day in spite of what I'm feeling. I make the choice to let my actions direct my thinking for the day, instead of letting my feelings direct my actions for the day.

That 4-pound jiggly mass of brains really does have a lot of power, and a lot of "tricks" that I have to learn how to use to live life, instead of only surviving.

You said you tried prednisone and the aminosalicylates (5-ASA compounds). Many people have allergic reactions to things such as Asacol. These are anti-inflammatory drugs that work on the same principle as asprin. Many people can't tolerate asprin, so these drugs probably won't work for them. Prednisone is a steroid, and steroids have very nasty side effects. They are prescribed short-term, and designed to reduce the inflammation. Controlling inflammation is only half the story.

The problem is that Crohn's Disease is autoimmune...it's something your body does to itself. Inflammation is the first part. The other part is the immune response to the inflammation. If the medicine you've tried targets inflammation, and the inflammation doesn't go away, the immune response will continue. That means your immune system will continue to attack your inflamed gut because it thinks there's something like a germ in there.

So the other half of trying to induce remission is to "turn down the volume" of the immune response instead of calming the inflammation. If the body stops attacking itself, the inflammation will eventually heal on it's own. There are new drugs coming out each year that target the immune response in Crohn's Diesease. There are drugs called "Immunomodulators", "immunosupressants", "biologics", and "anti-TNF" drug therapies for Crohn's Disease. These drugs include 6-MP, Imuran, Humira, Remicade...there are many others, and people here who haven't done well with certain drugs, have found that other treatments do work.

Surgery is also another way of living with Crohn's. 60-80% of us will need surgery at least once, sometimes more. There are men and women in this forum who have learned to live with surgical procedures. That is, they do more than survive, they live, love, and laugh. They are wives, husbands, mothers, and fathers responsible for the well-being of other people in their lives.

I understand many of the things you're going through including Crohn's Disease, depression, mental illness, physical abuse as a child, sexual abuse...I've been through these things, too. It takes time and a lot of hard work, along with determination to live a fulfilling life instead of just surviving - to keep these things from becoming my master. They were my masters at one time, and it seemed hopeless, like I didn't have any way out.

I'm not being insensitive by telling you that you can and need to make some choices - that you need to do some hard work on the inside and out. That changing your attitude first will help you start moving forward. Healing - whether it's Crohn's Disease or emotional recovery from incest - healing is a "forward-moving" process. The only place where I can begin to find healing is in front of me and ahead of me, not behind me. So I serve myself better by moving forward one footstep at a time, instead of looking back and getting stuck. When the train I'm riding wrecks, isn't it the best idea to get up and walk away from the wreckage as quickly as I can?

I also can reach out for help from others. Sometimes this disease is too big for me alone. It's terrible that you can't find family support. I know how it feels to be abandoned by a parent and your family. I couldn't change any of that. So I have to look beyond my family for support.

I'm going out on a limb here Melissa, but I'm going to say that you probably haven't tried all the drugs available to treat Crohn's disease. Also, with depression a part of your past and you're feeling it now, to ignore that symptom is dangerous. There are drugs available today that weren't available when I was taking Celexa just 6 or 7 years ago. From what my Neurologist told me, and he is a genius when it comes to understanding prescription drugs and side effects, clinical depression is treatable and curable. If you have unhealed emotional pain, Melissa, why live with it if treatment is available?

We are here for you. Learn all you can about Crohn's disease, and find a GI specialist who understands it, and that you feel comfortable with. Then dig in your heels because sometimes finding remission can take a long time. And be prepared to take on yor difficult feelings - just do it one day at a time.

All the best to you.

 

[Cackman888]

Regular Joe, that is absolutely brilliantly written.... I agree with you 100%, as you say its very hard to put into practice but each and every day we must try and take control of our disease and not let it define us!!!!! We are NORMAL!!!

Best of luck Melisa I hope you feel better soon.. x

 

[dreamintwilight]

Hi Melissa! I wanted to welcome you to the forum!

I came to the forum for the exact reason you did- for moral support. I was so overwhelmed with my Crohn's diagnosis. It really helped to find a group of people that knew exactly what I was going through. It is an amazing group of people that I've always been able to count on for support and advice.

So glad you found us. I agree with all of the advice everyone else has given so far! Hopefully having the extra moral support behind you now will give you the strength to make sense of all of this

 

[mneilsen2084]

Thank you all for the helpful words of advice. My dog is part Beagle and part pit bull.
I used to volunteer at the local humane center, but lost my vehicle last year. Sometime when I get another ride, I would like to start volunteering again.
I will write more in a bit, I need to get off of here and diagnose a computer problem real quick like.

 

[ataloss]

Welcome! I am pretty new here as well but have already found an abundance of support and information. The people on this site are truly amazing. Regular Joe....you really outdid yourself with your post....very well written and right on the money. Everything in life takes hard work and perseverance and crohn's is no exception. Best of luck on your journey through life and with battling this disease.

 

[GoJohnnyGo]

Hi Melissa,

A lot of us started out on this forum in similar straits.

Welcome to the team.

 

[ameslouise]

Welcome, Melissa!

You have been thru a lot and survived. You will survive this too. One day at a time.

And if dealing with your family causes you stress because of their lack of compassion, then limit your exposure to them. You can't change other people; you can only change the way you deal with them. You should only allow people into your life that can enrich your life.

Hang in there. We're all rooting for you! - Amy

 

[HospitalPatient]

May 27, 2010

Melissa:

Hi. It sounds like things look pretty bleak right now and I can relate to people doubting your symptoms or illness so if I were you I would try and surround myself with POSITIVE people and people who really care about YOU. Try to set short-term goals that are easy to accomplish so you can have some pride at the end of the day in accomplishing your goals. As far as Doctors and Medications, I would write to a Drug Manufacturer (Cimzia, Humira, etc.) and explain your Hardship situation and ask them to help you. I would do the same in your local community whether you being to a religious organization or some other community group. So, get through each DAY, get HEALTHY and then start cruising the Web for possible scholarships for people with a “Disability” who want to go to College. You would be surprised at the generosity of people when you are genuine and you simple ASK for help. Just DON’T EVER GIVE UP – you must have a “SURVIVAL” SPIRIT. (You also don't have to take this all on at once - try and plan it out and tackle each challenge at YOUR own pace.)

Once you devise a “plan” like the above that works for YOU – you will get caught up in it and then forget about what other people say or think. Right now, you should only care about getting yourself Healthy and only you now how much of a priority that is given your other challenges. You can always go to school but if your health fails you – there’s not much you can do. And every once in a while, do something NICE for yourself – no matter what your budgetary situation is like. Do something decadent and SMILE – that will attract other people to you in a “spiritual” way (I hate to sound so “Californian” but the “Vibe” you put out – does really come back to you) – and then implement this “Plan.” I bet that in 6 months you will have made MAJOR strides – and then look at life in SMALL increments so that you don’t get overwhelmed.

 

[mneilsen2084]

May 27, 2010

Melissa:

Hi. It sounds like things look pretty bleak right now and I can relate to people doubting your symptoms or illness so if I were you I would try and surround myself with POSITIVE people and people who really care about YOU. Try to set short-term goals that are easy to accomplish so you can have some pride at the end of the day in accomplishing your goals. As far as Doctors and Medications, I would write to a Drug Manufacturer (Cimzia, Humira, etc.) and explain your Hardship situation and ask them to help you. I would do the same in your local community whether you being to a religious organization or some other community group. So, get through each DAY, get HEALTHY and then start cruising the Web for possible scholarships for people with a “Disability” who want to go to College. You would be surprised at the generosity of people when you are genuine and you simple ASK for help. Just DON’T EVER GIVE UP – you must have a “SURVIVAL” SPIRIT. (You also don't have to take this all on at once - try and plan it out and tackle each challenge at YOUR own pace.)

Once you devise a “plan” like the above that works for YOU – you will get caught up in it and then forget about what other people say or think. Right now, you should only care about getting yourself Healthy and only you now how much of a priority that is given your other challenges. You can always go to school but if your health fails you – there’s not much you can do. And every once in a while, do something NICE for yourself – no matter what your budgetary situation is like. Do something decadent and SMILE – that will attract other people to you in a “spiritual” way (I hate to sound so “Californian” but the “Vibe” you put out – does really come back to you) – and then implement this “Plan.” I bet that in 6 months you will have made MAJOR strides – and then look at life in SMALL increments so that you don’t get overwhelmed.

Thank you. Do you have any advice for meating new people in my local area? This may sound odd to ask, but I have not made a new friend in about two years.
As for school, if I took a break to get my health under control I would not get my dispursment of financial aid and then not be able to pay my utilities nor feed my dog. It's crazy I know my health is more improtant, I am just trying to find a way to balance it all on my one head.

Faith and goals are what keep me waiking up in the morning. I use school a lot for my small goals. Like participating well in discussions, keeping my GPA up and other things like that help me emotionally some.
Do you possibly know where to look for these scholarships? I have gone to fastweb, zilch, and a few other sites to try and look, but always get results for many scholarships that I do not actually qualify for. I have applied for roughly sixty different scholarships since enrolling in school a year and a half ago, but have got no feedback from any of them. Because of the health thing, I am still concidered a freshman too.

Mel.