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Frustrated
TeddyBear
13 Posts

Hello everyone, no news……..is good news? Or is it just a really badly strained healthcare system. Some of you know my newest journey began last fall, 2021. Because of new symptoms and findings in my bloodwork by my rheumatologist re AI diagnosis. I have no idea why it took 8 months to do the few labs that have been done since. MGUS was diagnosis last fall. No idea why my neurosurgeon’s referral took 8 months either. But at least they are done. My labs from a month ago not so good I think….but still no clear explanation by a doctor. My Nurse practioner says it is over her head.I have an appointment with my rheumy Aug 8. Still no X-ray series either, as of yesterday I am not even on the list for an appointment. I was told they are at least 3 months behind. Called my rheumy again today, reception says she is trying to reach out to a hematologist about my lab results. I guess so she can give me as clear an explanation as possible without the availability of an actual hematologist. She referred me to one back in the fall but was denied and told she had to do the preliminary testing. Like a rheumatologist has any more time than a hemo. So needless to say I am some frustrated. One good thing is after all this waiting the fear is gone. After such a long drawn out affair, then getting the alarming labs back and hearing from nobody about them, I just have given up. I just don’t care anymore. I have battled AI disease all my life. The way I figure, my handling or treatment of this newest problem will be no better than my diagnosis so far. Who wants to live like that? Amid allot of whinny, overpaid, underworked staff, and then watching the few good ones left horribly overworked, in a system where you are made to feel like the burden and blame for it all. Not me. One would think that after a lifetime of AI struggles, and now a new possibly much more serious battle that at the very least we could have a timely and appropriate diagnosis, let alone treatment. I would just like to get on with my life. I need to know what is going on with my health, be able to say I educated myself, and considered all options. It has been over eight months now and I haven’t even been able to get that. Not only is our healthcare system not helping me it is actually harming me! How is everybody else in Canada doing with this mess of a healthcare system? I hope and pray for all you dears, that it is going better than in rural southern Ontario. Teddy Bear

3 Replies
supersu
1297 Posts

@TeddyBear

good morning - reading your post I completely understand your FRUSTRATION. I feel my blood pressure rising just reading it, on your behalf!

what a gong show your very complicated case has become! I cannot offer you anything that I am sure you have not tried. as a long time patient you sound very sophisticated and able to navigate the system.

if you need a fresh set of ears the Information Specialist folks at CCC are there for you.
1-888-939-3333 is the number to call, or they can be accessed via chat box from the home page here. maybe, just maybe, they have something to offer that you've not tried yet??

this community is a wonderful place to share stories. and of course, by sharing our story we often find out that we are not alone in our struggles. thank you.

hugs from over here,
su

#frustration #healthcaresystemfrustration #waitinggame #MGUS

Nicky01
302 Posts

@TeddyBear So sorry to hear about all the delays in getting treatments and the answers your are seeking. Yes our healthcare is at the breaking point and we are all stuck in it’s wheel that keeps turning more and more slowly everyday. Like you I have been frustrated more times that I can count for 18 months now waiting for test results or simply trying to get tests done in the first place until 6 months ago when talking to a nurse on the phone trying to get an appointment to have some tests done that I was told I needed she told me that as a patient under the healthcare system I had the right to expect to have treatments in a timely manner no matter where I had to go for that treatment.
So I decided to make an appointment with my GP and I did not ask but demanded to have the tests that I needed to be done no matter where I had to go in Canada, he was more than surprised by my demand and asked me if I was sure that’s what I wanted to do, I said yes because I am tired of the run around I am getting here while my health is declining every day. Three days later I got a call telling me I had my appointment to have my tests done in my own town 5 days later, tests that I was previously told I would have to wait 32 months to have them done because there was so many people on the waiting list. The reason I was able to get it so fast was that the way the healthcare system is set up when you ask to be sent anywhere to get treatments they can’t refuse you and they have to pay 80% of all your travel expenses including meals and accommodation. I live in Quebec but I imagine it would be the same thing no matter which province you are from in Canada. I also did the same thing when I was told I had an 18 months waiting period before I would get to see a rheumatologist, 2 weeks later I was seeing a rheumatologist.
Do not give up and do whatever you have to do to get the healthcare you need now…not later down the road…..no matter what keep fighting for yourself!!

Nicky.

Cynthia Mac
3983 Posts
Nicky01‍ Good for you for advocating for yourself and getting results.

TeddyBear‍ , when I was with my Dad on his lung cancer journey, I learned that the medical community tends to react in a “triage” manner - if the condition is serious and life-threatening, they don’t waste any time, and if the condition is less so (as it was with my experience with HPV decades ago), the response will be slower.

According to the Mayo Clinic website, Monoclonal Gammopathy of Unknown Significance (MGUS) “usually causes no problems.” However, you also have a life-long autoimmune condition that could impact that, so, without knowing the possible ramifications of that, it seems important to get those routine blood checks done.

There are good ways and bad ways of going about advocating for yourself. In your case, I think this is what I would do:
1. Call your doctor (“Rheumy”) or NP and request an appointment to discuss your case. (Try to keep the time as short as possible)
2. Write down a list of all your questions and leave room to have the answers written in.
3. If you have someone who can go with you as an “extra set of ears” do that, and let them be the “scribe”: hand them your list of questions so they can write the answers down while you focus on what the medical team member is saying. I did this for my Dad with much success.
4. Ask very clearly for the opportunity to have further consultation if you have more questions after the appointment.

If this process is unsuccessful, then I would start notifying people in writing. If the holdup is at the lab, write to the head of the lab company to let them know what is happening in the field office. If the issue is with test results not getting to the doctor from the hospital, write to the hospital CEO and let them know how this concerns you and how it impacts you. If the issue is with the medical practitioner, you can write to their association or professional college to make them aware. Any such letters should also be copied to the person or office or department of concern, and with the knowledge of the repercussions the letter could have on the health care system at large.

Hopefully these tips will help you get some answers.

#SelfAdvocacy #gettinganswers
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