Financial Support: Where Do I Go For Help?

By Jaxx2727

Last Updated:

1 min read

My name is Yvonne. I was diagnosed with AS a couple of months ago.

I have no income.

My doctor is not cooperating. He says if I can feed, dress and walk, then I DON'T HAVE A DISABILITY. My specialist won't start me on treatments until after my MRI for the results of my kidney cancer (had my left kidney removed in October 2019).

I live 24/7 in excruciating pain!

Called a number of resources...I either have to get my doctor involved or I don't qualify.

WHAT, WHERE can I go or turn too for help?

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Patti49 Member

Awww im so happy for you. Gee i hope i get lucky to. Im turning 50 in August and as for help ..um im doing it on my own. I have 3 kids who try and help me and a husband who talks the talk about helping me but pfft thats a joke. Im alone..full stop!
Patti49 Member

I hear ya...i left my job cause i was in sooooo much pain ..but after using all my savings i relised that i dont have any money for anything. So..i got another job..im scared that im gonna be in pain but i need money. I heard to get on disability payments u have to sell a bloody kindney. I just dont have the strength 😔 
1. Jaxx2727 Member
 
 <inline-mention username="Patti49" user-id="4538120"/> HI Patti, I'm sorry for not responding earlier, I wasn't up too much of anything, just hiding everyone and everything! I was losing hope fast, even somewhere in to the cardboard box I might have to live in! I was going very fast to a dark place! I kept fighting and fighting! Then I was blessed with a TRUE MIRACLE! Where I was getting the bare minimum support ($425.00 a month), nobody can live off that! They totally agreed, but I needed a doctor's note about my condition, which my physician wouldn't cooperate. They gave me some numbers to call, and I found a Wonderful Doctor! What I have been going through for almost 2 years; suffering, stress, pain and neglect, all got taken care of IN ONE VISIT! I was so overwhelmed, unbelievable, I just started bawling! She prescribed a pain relief, gave me a Doctor's note, and made an appointment to see her to fill out the application for financial support for the most difficult and highest support and financial assistance you can get! It's getting accepted into Harvard or something like that. You/We/Us have a Nasty, Painful, Disability/Disease! Keep fighting, get another doctor. You're the only one who knows what your limits/capable of. You shouldn't have to stress your already stressed body! May I ask how old you are? Do you have a significant other/children to give you extra support? I had no one. My Husband of 32 years passed in January 2018, my Father in June 2017, and my husband's Mother in October 2016. I got kidney cancer and had my left kidney removed in October 2019, I'm still in remission, now this diagnosis, AS in October 2021! I Love You Today 💖 Yvonne Parsons Edmonton, Alberta, Canada 🇨🇦
Jaxx2727 Member

That's Fantastic Julie Adalimumab works for you! I wish I could say the same! Still suffering 24/7 excruciating pain! It's getting more difficult to function day by day especially mornings. I figured treatments would soon as I was diagnosed in early October 2021. I'm at wits end. I guess it's not important with this COVID. I sure hope to catch a break soon! Take care, thank you for your support. Yvonne Parsons
Jaxx2727 Member

Hi Auldyn, I went to another doctor, his response was I have to much history with my doctor and go back to him! I must be cursed! Is anyone else going through this kind of inhumane, stressful, neglectful treatment. I had an appointment with my Specialist on Jan. 19 in hopes I would get/start treatments. She (my Specialist) ASKED ME what treatment I wanted...are you serious! I don't know, you're the damn Specialist! Gives a medication sheet for the drug Adalimumab Injections. Told to stay by my phone and make sure I answer! It's now Jan 27...NO phone call yet!!! It's the end of the month and the bills are rolling in. I have NO income, NO treatments, NO cooperation from my doctors, NO support and still in excruciating pain 24/7 and...NO HOPE! I have reached out to every resources I could...Radio and TV stations! I live in Edmonton, Alberta, Canada 🇨🇦 
1. Julie Vallortigara Member
 
 <inline-mention username="Jaxx2727" user-id="4517104"/> Hi Yvonne, How are you coping? Do you have any news from your specialist since your last post? I am based in the UK so I am not familiar with the system in Canada. I just want to say that I hear you and we are here if you need support. Also, regarding the treatment advice you have been given, I have been taking Adalimumab for seven years now and it really changed my life for the better! I can function with that medication, it works very well for me. I don't have much AS pain anymore, my joints are not swollen, I can work, I can exercise and I can manage to live with my condition. I hope you can find some sense of relief with some treatment. Take care, Julie.
Auldyn Matthews Member

I cannot believe you have to go through this on top of everything else with AS. I am so sorry to hear that. It sounds like your doctor isn’t really giving you the support you need. Is there any way you could get a second opinion? I’m in the US so not super familiar with financial support. Don’t know if paying for medications is challenging for you, but if it is, calling the manufacturer is sometimes an option for help.
1. Jaxx2727 Member
 
 <inline-mention username="Auldyn Matthews-McGee" user-id="2379466"/> 
2. Jaxx2727 Member
 
 <inline-mention username="Auldyn Matthews-McGee" user-id="2379466"/> The call I got from Harmony Organon said they would be bindering the cost of the prescription from the manufacturer and taking care of the premiums for the prescription at no cost too me. It's going on 3 weeks since that call! It is really unfortunate that my Doctor hasn't been cooperating, which puts me in this terrible position with no financial aid for survival, suffering with no treatments. I've tried another doctor only to be told that I had too much history with my doctor and go back to him.
Jaxx2727 Member

Thank you James for much needed listening and responding to my turmoil. I'm in Edmonton, Alberta, Canada. My MRI came back clean for another year, Yippee! Still no treatments or any kind of relief for my excruciating 24/7 pain! Now I have to book appointments for immunization shots. More waiting! Good note, have an appointment scheduled on the 19th of this month with my Specialist. I'll gather any and all applications for financial support with disabilities. I have an organization filing a Disability Tax Credit on my behalf. It's only a one time payout and mine isn't very much. If only my doctor would've reacted in a better manner and cooperated, I most likely would be on some sort of Disability Support. Waiting times and very strict guidelines are very difficult to be accepted, and without any doctor's support for this condition is impossible to attain acceptance. Very bleak start to a new year with no financial support and a newly diagnosis of this disease, which I'm still trying to comprehend. All I know what has been told is I have AS, and my back is deteriorating. All I'm feeling is excruciating 24/7 pain everywhere and my joints that are visible protruding out of their sockets! INHUMANE TREATMENT is absolutely unbelievable! I even touched base with my MLA, who don't deal with such matters.
1. James Hollens Member
 
 Hi <inline-mention username="Jaxx2727" user-id="4517104"/> That is awful I am sorry that you still have been unable to receive any treatment or financial help. Can they not prescribe anything based on the fact you have been diagnosed despite what the MRI may have said? How did your appointment go? Were you able to make any progress after it? I really hope you are able to make progress soon - both with your applications and your condition itself. Sending love and positive vibes, James (Community Member)
James Hollens Member

Hi <inline-mention username="Jaxx2727" user-id="4517104"/> , I'm so sorry to hear that you are going through all of this, this stress on top of the pain is surely the last thing you need! Where abouts are you located? What you can apply for depends on where you are but most countries have things in place to provide some kind of help. I hope your MRI results go well and you are able to start treatment soon and get some much needed relief! Sending love, James (Community Member)
1. Jaxx2727 Member
 
 <inline-mention username="James Hollens" user-id="2386640"/> Stress is sure playing its role! I live in Edmonton, Alberta Canada 🇨🇦 We do have programs for people with health problems, very good programs! Any/All programs/organizations/support requires Doctor's cooperation/support, without their cooperation your application doesn't even get looked at! I'm lost for words!