Update on Us

[mpizzazz]

It's been brought to my attention that my absence on the forum for several months has been noticed. Now that things are going better I've been planning to write and explain what has happened. We don't normally talk about our health issues but Ray and I hope that it helps someone else avoid what Ray has gone through since April.

He has been diagnosed with Statin Induced Myopathy. Statins such as Lipitor (cholesterol medicines) can cause muscle weakness as well as many other side effects. In Ray's case it didn't show up right away but took almost 3 years to nearly incapacitate him. About 10 percent of people who take statins are severely affected. Since they are the number 1 drug prescribed in the US, that could be a lot of people.

Ray has written a very brief summary of it on his blog: http://ratbagp.blogspot.com/2019/07/

Since he came home from Johns Hopkins in late July, he has continued to improve and can now walk around the block in our neighborhood. It's .8 mile with a few hills, maybe someday he will get back to his 3 mile walk, but this is a huge improvement. He has had 2 followup visits at Hopkins. He is starting to plateau now and his bloodwork is still not good. So they want to do IV IG infusions that will attack the "bad stuff" (that's not an official medical term!) still in his blood. The doctor who developed this treatment is at Hopkins and we met him last week.

So, the moral of the story is if you or anyone you know takes a statin and starts to have trouble walking or feels weak, pay attention, do your own research, talk to your doctors about it and don't think they always know best!

And, in some very surprising other good news, I submitted my application for a Permanent Resident Visa to Australia on April 6. On Monday this week, I got a call from Australia that my Visa had been issued. Less than 6 months! The process can take up to 3 years if they want to give you a waiting period. I like to think that all the photos and scrapbook layouts with our stories attached helped convince the case officer that my sponsor and I have a lasting relationship! Now we can move to Australia anytime!

[Monica]

Wow, Marianne! That's quite the ordeal Ray is going through and a definite cautionary tale. I hope they can find treatments to help him continue to improve. And congrats on your visa!

[Debbie J]

I’m glad they figured out what was causing his weakness, now onward to healing and hopefully becoming 100% again. And that’s exciting about your visa, did Ray have to go through the same process or does he have duo citizenship?

[pat-czap]

First off...Great news on the Visa application.

Secondly, how awful for Ray. I will let Greg and my sister know about this condition.

I am happy to hear he is improving. I HOPE the IVIG works for Ray, and is not a bandaid treatment.
My hope is Ray's doc has tremendous success with this treatment. How fortunate for you to have found him.

Sending all good vibes and healthy wishes to Ray as he embarks on this new treatment. I will think only positive thoughts of his renewed health. Marianne, I hope you are taking care of yourself.

[mpizzazz]

I’m glad they figured out what was causing his weakness, now onward to healing and hopefully becoming 100% again. And that’s exciting about your visa, did Ray have to go through the same process or does he have duo citizenship?

Debbie, Ray also had to fill in a form and write stories about our relationship but not as much as I had to do. We both had to have State and Federal police checks but only I had to do a medical exam. Ray has dual citizenship, US and Aus.

[mpizzazz]

Thank you, Monica, Pat and Debbie for the well wishes for Ray. I hope his story helps other people.

[Debbie J]

So when are you planning the move? Hope to see you at ReCreate.

[nchoney]

Wonderful news on the visa!!

Good news about now knowing what's up with Ray. Wow...pretty scary!

[pbp908]

I hope Ray can get beyond the plateau, but thank goodness he has a diagnosis and some improvement.

Congrats on the Visa, but darn it'll be strange w/o you here in the States!

[paddlegal]

Oh my goodness Marianne! How scary for you both. Thank you for letting us know what has been happening and you know Bob and I wish a full recovery for Ray and that your move goes smoothly from here on out. Also this is important information since Bob is also on a statin. We’ve always been aware that statins can cause muscular difficulties but I had no idea to this extent.

Congratulations on your visa success.

[Trixie]

I am so glad to hear that Ray is doing better. What a relief it must be just to know what is causing it. Now, at least, they can treat it.

I never had a doubt that you would be accepted, just glad it was fast. Australia is lucky to have you!

[mpizzazz]

So when are you planning the move? Hope to see you at ReCreate.

I don't know at this point but hopefully before August next year. Our tenant is in the apartment until August but we can give her two months' notice if we want to move before that. We are going to OZ the end of this month and will talk to her as well as all the legal people involved in this adventure. One thing that is very convenient is that it is a furnished apartment so we can live there while waiting for our stuff that we will ship from here.

[mpizzazz]

Oh my goodness Marianne! How scary for you both. Thank you for letting us know what has been happening and you know Bob and I wish a full recovery for Ray and that your move goes smoothly from here on out. Also this is important information since Bob is also on a statin. We’ve always been aware that statins can cause muscular difficulties but I had no idea to this extent.

Congratulations on your visa success.

Thanks, Farley! Yes, I was thinking of Bob during all this. The weird thing about Ray's case that made it puzzling is that it took a long time for the effects of the statin to appear. Most people have a reaction shortly after starting it like a woman in my quilt group who said muscle weakness started 3 or 4 days after she started the statin. So she stopped taking it and then she was fine.

The only thing we can figure was that Ray was very fit from all his walking and that it just took a very long time to wear him down. Plus age and probably some other health factors may have contributed to it. He was on the highest dose. There are other drugs besides statins for cholesterol. They probably have their own side effects. Hopkins doesn't want him to add any drugs to what he is taking now until they fix this.

[mpizzazz]

Thanks, Debi, Pam P and Judy for the well wishes for Ray.

I'll only be a "click" away and I might be lobbying for a West Coast ReCreate!

[pamcook]

Ray is the second person I know who has had this happen. My mom became extremely paranoid and delusional after her first few doses.
I’m so happy he’s now being treated for the cause - not just the symptoms.

Will you move before May or any idea?