One of the things I would look into is prescription vites that are not offered OTC. Am I right thinking your insurance will pay for prescriptions? See if you can find a group online of CF(cystic fibrosis) patients in Canada. They malabsorb like we do. See what vites they get scripts for. I am at a disadvantage not understanding your insurance but I know there are forms of iron, D, etc that are prescription here.
And you have your recent hospital visit you can use to prove you need these prescriptions!!!!
I'll look and see if I can find information as you suggest on CF patients within Canada. The issue is that I am on a lower form of insurance. ODB (Ontario Drug Benefit) is a way for the government to provide drug and dental insurance to low income earners, however it is also a way for them to pay less than private insurance would. I was checking the ODB formulary last night to see if any new items were included, but that was not the case.
The only government funding for vitamins are for First Nations (Native Americans) who have a different formulary, and there is another program for people with genetic (for lack of a better term) disorders that have malabsorption issues. However, on that list of covered items each item is denoted by what condition is covered for it.
If I had private insurance the real issue might be getting dry formulated vitamins. I actually went to the Walmart pharmacy where I brought the vitamin D 50,000iu prescription my family doctor gave me to inquire if they by chance had a dry formulated version of the vitamin D, but the pharmacist I spoke with in my opinion didn't seem to understand my inquiry. She kept saying "vitamin D is fat soluble..." so I just gave up. I could inquire with other pharmacies, but I suspect they won't carry it due to the fact it seems only a very small number of manufacturers even make it to begin with. Not finding it within Canada sort of also leads me to believe that. There was one or two Canadian websites that I believe were US run operations offering the D3-50, but the cost was almost the same for what I could get 200 capsules from Amazon and the shipping would have likely doubled it as I more than likely would be dinged with a hefty brokerage fee and duties. At least with my friend he could mark it as a gift and I would not get hit with those additional fees.
Jeff
I am glad my post about my struggles and lengths got you fired up. Munchkin has a great idea with CF group research on what SCRIPTS they can get covered.
Additionally as larra mentioned there are some real key supplements to prioritize.
Best of luck in your endeavor. We are rooting for you and want you to get healthy.
Scott
Scott,
I'm going to fight tooth and nail to find some sort of coverage/reimbursement given how I've seen certain things can affect me. That is what I have been doing now is prioritizing what supplementation I need now due to levels that are outside a normal range. Larra did mention that the numbers I sent her privately she couldn't really give too much insight into given that the system is different in the US.
Presently I now have my MV (Kirkland brand, although I'm curious why it is a 500 count in the US and only 350 in Canada! I may have to look at the cost per tablet and if it works out better with the exchange for the US version I'll pick some up if I go to Detroit with my other grandfather this summer to catch a baseball game), calcium in a liquid form that seems to be a mix of citrate and another form of calcium that I can't recall at the present. I picked up some zinc last night and hope that will clear up the dermatitis issue on my face that has flared up for most of the month (can't recall it ever going on this long). However when speaking with Larra she felt 200mg might be too much. I was sort of going off your regimen. Given that my zinc was below the normal range perhaps 200mg for a period of time might be ideal until blood labs show it in a safe range? I am also going to look into vitamin A as that was low and I'll order it along with the D3-50 from Amazon.
I really do need to see a full on blood panel though and as aforementioned I really do hope the Toronto General Hospital did a full panel and sent the results to my family doctor so I can request a copy. They took almost a dozen vials of blood and usually with the tests not covered at the lab at my doctors office it's only a couple vials they take. So fingers crossed!
I am appreciative of the support and guidance being offered by those who have more experience in these matters, but at the same time I'm trying not to come off as dismissive given the financial constraints I am under, lol. One problem I have is that I am all too willing to help others in need even if it puts me out. Some family members owe me a combined sum of nearly $700. That could help cover a fair amount of supplements until I get some sort of coverage. The sad thing is this is just two people who make 2-3x more in a year than I do. It's good to be charitable, but I have to now put more concern for my own well being at the forefront. If I'm not around then I can't help anyone.
@Baldrick, hello and welcome.
I'm sorry that you have had such a difficult time with funding for the vitamin supplementation necessary for all DS patients and have no answers for that other than to possibly reach out to manufacturers and see if they have programs for low income patients, the way some pharma companies do.
In terms of seeking employment, volunteering would be one way to add something to your resume that would demonstrate your ability to show up, work well with others, complete tasks, etc. Another idea might be to enroll in an educational or vocational training program that would help with placement. Student loans might also help fund housing, food, and *supplements*.
Wishing you all the best!
Hilary
Hi Hilary,
I did do some volunteering and was made an honourary member of a local rotary club shortly before DS revision. I helped co-run a initiative that actually helped me with some funding for a bariatric hospital bed and the old chap who started it actually convinced my wealthy grandfather/uncle (my uncle tends to be brought into financial matters) to cover 1/3 the cost. We would receive requests from medical professionals (usually occupational therapists), we'd review the request, my more able bodied and full rotary club member would conduct a face to face interview with the person and then we'd make a decision on whether to try and fund the request. The cost of the medical equipment was basically a split between the service clubs from the region who would participate cover 1/3, the family would cover 1/3 and I believe the other 1/3 we looked to the government.
It was a an interesting volunteering experience. However I got sick and then my grandmother who was diagnosed with terminal cancer passed away and I took it very hard. The old chap who retired and moved up north decided he missed doing this work so he moved back to the area and he took back the program and I was sort of just cut out. He did visit with me once not long after he had returned, but there was never any closure. I think at that time I took on more than I could chew. I had thought about reaching out to them again to see how things were going and perhaps see about helping in some capacity, but I have trouble with confrontation as I always assume the worst. Honestly I am not even sure if Ron (the old chap) is still alive and well, which is also sad.
Right now until I get the calcium issues sorted out I'm not much good unless I'm sitting doing desk or computer work. I'm only 31, but my body feels like it's 80 at times due to all the wear and tear it had to endure.
Certainly something to explore. Although last night I had a positive conversation with an old friend who is in web development and for the past few years I was looking to start an online business, however with no budget that made it difficult. Trying to find people who will do work for promises isn't easy, however a partnership did peak his interest. Now I just need to get my buddy out in California to start talking to me again and accept my request to have him come back on as the graphic designer and things could be looking up. If it pans out I could be off disability within a year (if not sooner).
Anyways...clearly I'm yappy today due to limited social outlets today, heh.
