How do you spell frustration…..

[shirlsgirl]

so sorry to hear about all of that. I had no idea Caroline. That’s just awful. I don’t blame you for being so upset. Hope your Dad improves very soon. How very frustrating when doctor’s don’t communicate with each other…this shouldn’t have happened.

take care,

Jody

[Caroline]

Jody,

I think it has alot to do with the amount of paper flow rather than the people. Doctors dictate notes. Notes get FAXED and then get into piles and wait, etc. I am happy that our Dr. is phoning now instead of depending on notes anymore.

It would be nice to be born with an abundance of knowledge so you could avoid conflicts and such before they happen. As it is, we end up at their mercy and depend on their expertise to help us and our loved ones. Problem is that thousands of other people depend on them as well and they are only human and can only do so much.

Still, it gets frightening.

[Luke and Margaret]

Oh boy; Caroline, your example of things faling between the cracks is what I am terrified of here in Ontario! Our American friends may not have to worry about his stuff in quite the same way. While in their system the costs are largely borne by the user (which brings its own terrible frustraitons), in our system costs are supported by taxes.

Here in Ontario, the health care system was pretty much gutted by the last government in an effort to cost contain. The current government cannot afford a “fix” so has opted for bandaids and putting pressure on hospitals to manage differently. The result is a total dog’s breakfast. Those waits in emerg are absolutely GRINDING. We waited 48 hours of a bed last time, 24 hours this time. Even 11 hours is too long. We drag our feet in the worst way when something spirals out of control, and try to avoid it. We’ve had four admissions since August, all but one through emergency. ARGH!

Caroline, this may sound like a control freak’s solution, but I put together a patient summary for Luke. It lists diagnosis and date, all the docs, all meds and supplements, the results of bone marrow and blood tests since August, and a daily weight, temp, and BP chart along with notes. It is getting long now, but I don’t trust information to get transmitted without having direct input. Even with it, often docs don’t read the critical data, and I have to walk each new one through the issues step by step.

It is completely horrifying how much we have to become experts in our own disease to survive the system we now have.

In your dad’s situation, is there a solution that your oncologist is proposing?
M

[Caroline]

Margaret.

I have a binder for Dad and another one for my Mom. She is also terminally ill and we are seeing a host of specialists for her as well. She needs a very delicate surgery in Hamilton as soon as they can stablize her enough to perform it. At the moment she is at an 80% chance of massive stroke so we haven’t gone into too much detail about Dad’s condition. Her Vascular Surgeon has us under strict orders NOT to upset her or let her blood pressure rise. She could have a massive stroke and die. We keep her blood pressure down by telling her that Dad is ill and needs to sleep alot and eat alot of healthy food. So she cooks alot of fantastic meals and takes care of him. It helps to keep Dad calm and gives Mom a sense of purpose. It also has helped to keep Mom’s mind off of her own illness, which is grave. I…am the one who is panicking. Mom came along to the last Oncologist visit so he didn’t go into any details about what he wants to do next. That was why he wanted to speak with me on the phone after he discusses Dad’s condition with the Kidney doctors. He tells me what to do and I arrange things with Dad and Mom as non-threateningly (is that a word?) as I can so that neither of them get too upset.

So far this is working but you’re right Margaret. You have to become an expert in the field to simply help someone you love. I have spent the past 5 years living this way fighting for the health issues of my husband who lost a part of his bowel and my 3 teens (1 brain injury…1 tumour on his spleen…1 chronic migraines). Now I have added Dad and Mom to the list. Each day there are new road blocks and more to learn.

The only thing I have ended up with so far is ulcers. Does anyone have any natural remedies for ulcers? I really don’t like taking the Dr.’s medicine but Nexxium is the only thing that helps the constant pain. I can’t afford to get sick now but I can feel it getting worse.

Blessings,
Caroline

[patti]

Oy! Margaret and Caroline, I have to tell you that although American medicine might be spendy, I’d much rather have it the way we are here than government run medicine any day! As your government is finding out, it’s not cheap to insure every human being that exists in your country. I pray America NEVER gets government health care. Ya know, my husband and I currently do not have health insurance because our business is still little and we can’t afford the $600 a month they want to insure all five of us but you know what we’ve discovered? If you go to a doctor and do a fee for service plan, it’s A LOT cheaper. We pay cash (check or credit card) when we go and they give us a discount because they don’t have to bill the insurance companies. In the end, it’s cheaper than if we’d paid for health insurance. So we’ve already decided that all we’re going to get when we can actually get insurance is major medical in case something serious happens. But we’re going to get a $10K deductible because everything under that is cheaper to pay out of pocket. I’m so sorry you guys have to go through this. My husband and I have been talking all day today about it. How frustrating.

Okay – Caroline – your ulcers. I just popped up with one this week. Lovely. Due I’m sure to all of the stress. Never had pain like it. There is a natural cure though! You can take something called DGL Licorice. You can buy it at http://www.puritanspride.com. Very cheap for a bottle of 100. It is a tablet of sorts that you have to chew or suck on because it needs to mix with your saliva for the enzymes to start working. It tastes terrible but I discovered sucking on it in the cheek and it’s not too bad. You take it 3 times a day and it will not only take the pain away but it will actually HEAL the ulcer. So I’ve been at it for two days and I am already feeling better. Also, stay away from dairy. It aggravates ulcers. Which is totally against what I thought. I always thought a good glass of milk would make it feel better but try that experiment and you’ll quickly discover it makes it worse. I am so thankful my herbalist told me that because I like milk! Fermented dairy products are okay (yogurt). She also told me it won’t work to just use any kind of licorice. It has to be this “deglycerized” type. If you can’t order from Puritans Pride (not sure if they ship to Canada) I would actually be very willing to do it for you and ship it myself through our business. I’m just thankful the stuff works after this week! I thought I was having a heart attack it hurt so bad.

Best wishes to you both,

Patti

[sugarwhale]

Dear Caroline,
This little note concerns your ulcer. I am under the impression that medical science has now found that ulcers are caused by a bacterium. They have an antibiotic. If you take a full round of the antibiotic, the ulcer will disappear. A friend of mine had this done recently; there were no problems at all.
I wish I could help you with all your other problems. You must be a strong person. You HAVE to be! Just know that you are in my thoughts and that I hope things turn out better for you. My dear mom has a saying that I can share with you. She says, “Always remember that things never turn out the way you think they’re going to, and sometimes they turn out better!”
Thinking of you,
Janet

[eve]

some ulcers are caused by something called
H – pylori – some are not – there is a blood test that can be given to determine this

unfortunately because of my dad i have become quite familiar with ulcers in the last couple of months – his newly developed ulcer has periodic bleeds – it causes a major hemoglobin drop – his is not caused by the virus, so he is being treated with protonix – we keep our fingers crossed each month after his vidaza treatment because that is usually when it happens (his platelets drop quite a bit after treatment)

eve

[Caroline]

Patti, Janet, Eve.

My husband and I are also self-employed. I do custom knitting/crocheting/spinning and Peter is a programmer. Even though we live in Canada, alot of our Medical Coverage is NOT covered when you are self-employed. We have no benefits so we joined a group insurance plan. Get this….we pay $3,500 per year just to be allowed to be in the plan, plus we pay $500 per month for benefits. There are 5 of us in the family. This does not cover all benefits. We still have to pay for alot of the dental, some of the hospital, a portion for drugs, etc. For example, if one of us gets a cavity, we pay 20%. If we need a root canal, we have to pay the whole thing PLUS we pay for a cap, preferably a gold cap according to our dentist. Peter needs a root canal done but he doesn’t have the $2,500 so he has to wait. In the meantime, he has to pay for the pennicillin everytime the tooth infects. I’m not complaining. It could be alot worse but you get an idea.

Thank you for your Ulcer advice. I will go to the site and check out the licorice. I don’t like the taste of licorice but I’ll try it if it makes the pain go away. I had all of the blood tests done last year. I am my own worst enemy. With all of the stress over the past 5 years, I developed headaches overnight every night. They were horrible. I couldn’t even open my eyes. So, every morning I got up, made coffee and swallowed 2 Advil. After a couple of hours the headaches came back so I took more Advil…and so on throughout the day. Ultimately, I burned holes in my stomach with the medication for the headaches. When I told my doctor, he yelled at me, then he laughed and called me an ‘idiot’ and said that he didn’t blame me but I should have come to him with the headaches…NOT the medicine cabinet at home. I didn’t know that you can get ulcers from Advil. It takes years for the ulcers to repair so I take Nexxium in the mornings. Things were going well until Dad and Mom got sick. Now the stress is back, and the burning has started again. I guess the ulcers were not completely healed up yet. I’ll try the licorice. I will let you know if I can order it online Patti.

Hope you all have a nice day.

Caroline

[Author]

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