KatT's Journal

[Fred]

Are you going for the longest list of medication award amongst the Psoriasis Club members. 

Re the pain in your legs, do you have varicose veins ? I ask because I used to suffer with a lot of pain in my legs, one day it got so bad I went to the doctor and within a couple of weeks I was having both legs stripped of the main veins.  I wasn't expecting that but they said it had to be done, and they were right after a couple of months resting my legs were like new again and there was no more pain.

As for talking with your family and making plans, only you can decide on that but personally I would share with all my family and get all my affairs in order so as not to leave them with the burden on top of their loss. No we don't like talking about going but if you are at a higher risk of going before your time it may help you and your family to talk about it.

But you can't go yet, who is going to do the music playlists ?

Oh and if you do decide to sort things out tell your husband to give me a call if you are in a coma and I'll get all the Psoriasis Club members to sing "Tiptoe through the tulips" down the phone. That will wake you up.

KatT you are a great person and you have a strong mind, use it to your advantage and keep that positive attitude going.

[Forest Walker]

With such clarity, you told us what you are facing.  If you were to save that post, whether in print or electronically, and Hubby knew how to access it, then if something happened to you suddenly, your family would know what's going on in your own words.  Your post is precise, straight forward, and clearly written.  It could be a backup message until you decide how/when to discuss with your family.

I sure wish this wasn't happening at all.  Knowing that your time may be shorter than you expected, you will prioritize what matters most to you and pursue whatever that may be.  Your smart, wise, and funny forum friends are with you.       "You are a great person and have a strong mind."  I so much agree with what Fred wrote.  

If the idea of getting all your ducks in a row is overwhelming, then herd one or two.  Do what you can, but if you can't do it all, that's going to be okay, too.

You and your doctor are a stronger team, now.  She wants you to contact her as necessary and has promised to act quickly on your behalf.  What nationality is she?  I'm trying to imagine the accent.   

I care about you, KatT.     I wish I could help more.

[Kat]

I wish the news had been better. But stay positive and live life. The truth is none of us know how long we have.

As for telling people, I think that is a choice you make based on what you feel is best.

[Wooley]

Ah bloody hell Kat, not the news you wanted for sure....  19 years ago they told me to sort my affairs out, get my ducks in order etc etc - still here!!  I know we're all different with diagnoses etc but no one really knows whats going to happen.  

Things might seem a bit raw, numb, I totally relate to that but you are a strong person and once things sink in you might be able take a big leap of faith and step out and give two fingers to your prognosis..... life is for living and I know that you are one hell of a strong person and with a good positive attitude too!

Try and stay positive and know that all you Psoriasis Club friends will support you all the way 

[KatT]

I will not use quote as this will be extra long....my last update was long enough as it is aaaand I will have another quick update that I  will post later this evening as I had another appointment today that I had completely forgotten until I got a reminder from Outlook!

Thank you all for the support    The owner, helpers and members on this forum are THE BEST!!!

Yes, the post was long with a lot of information lol.....I am still digesting and trying not to get emotional when I talk or write about it!  Should be ok in a couple of days 

I did look at various blood thinners and Brilinta, the one I am currently on, I don't have side effects.  It's effects are also reversible.  Heparin, which the rheumatologist mentioned in case I need it, has non reversible effects....but it's not clear what is irreversible....this can be good or bad depending on the situation. I would prefer being put on one that is reversible.

I love the saying about cracking cars.   Hope this will be my case!

I don't have varicose veins....not yet.  The pain is really due to the statin.

Talking to my family will be really tough...will wait till I fully digest before having a conversation...I am going there this weekend again as they need my hubby to do plumbing work so might take the opportunity to talk.  It's going to be hard as on the other hand, I don't want them to panic, worry, stress, etc  They are 75.....

Getting affairs sorted is easy.  Plus I had one of my employee who lost her husband (hospital at fault and she won her case) but I saw her scrambling to find papers and other things....it took  a really long time to finalize everything.  I do NOT want my hubby to go through that!  I want to make it as easiest as possible.

I don't plan on going yet though!  You ain't getting rid of me and my playlists any time soon 

Tiny Tim will wake anyone from a coma....or kill them!  If I end up pushing daisies after that, I will go on a haunting trip.....somewhere in France....will switch the music to rap every time you try to listen to music 

I believe my doctor is from Roumania.  She is awesome!!!!!  Just difficult to hear properly on speaker phone.  I am getting used to a lot of accents as I work with IBM consultants and there's a lot of different nationalities but none are from Roumania.....

Reading and replying is perfect and what I need!  I will get through this...just need to learn to listen to my body and take action right away instead of enduring or waiting till it passes.

True that none of us know when we will go....could be perfectly healthy and get hit by a bus tomorrow and pass away..  

I could be lucky and be a cracking car that lasts a long time!  I did say I was a Chevette 

[KatT]

Update May 17, 2022

I had forgotten about the appointment with the Internist from the Gatineau Hospital today.  Thank god I had put it in my calendar and it popped up and that it was by phone so I didn`t have to cancel meetings and drive there.

Last appointment with him he hadn`t received all the test results.  Now he had them and confirmed I have lupus (old news).  Provided the criteria that I met, there`s a list of criteria and must meet at least 4 to have a lupus diagnosis.

I told him about my new rheumatologist.  He knows her as they went to university together, she was one year ahead of him and supervised him during an internship.  Small world!

I told him about APS and asked if that could have caused my heart attack.  He said it is totally possible but cannot confirm as I was tested for lupus which includes APS after the heart attack.  Basically chicken and egg scenario.

He will leave the treatment up to my rheumatologist but said he would follow up every six months just to see how I am doing.

I feel extremely well surrounded now which is great    

Now trying to get an appointment with my GP (tomorrow if possible) as I want to switch the pain medication that I was taking only at night as pain sometimes kept me awake....not that I was crying in pain, most of the time it was very tolerable but just annoying enough to prevent sleep.  A non addictive sleep med will help better.

I also want to try Ozempic to lower blood sugar, lose wait and it`s good for the heart

I also want to ask about a nutritionist....I found some that are specialized with chronic illnesses but wonder if it`s covered if I have a referral.

So good update this time....doesn`t take away the APS but taking steps to help prevent issues.  I must if I want to avoid you lot from signing to me a supposed hit from someone I shall not name....

[Fred]

Sounds like you have a good team of medical people around you KatT.

And we are all here too.

[Forest Walker]

D'oh!     You did say that your doctor was from Romania earlier.  I forgot until I read it again.  Accents are so hard to understand over the phone, sometimes.  

During the pandemic, I got into the mode of keeping my papers organized, my purse tidy, my information easy to find, but here in 2022, my desk and purse are a mess, again. I have a high tolerance for paper clutter, apparently, or a laziness about filing papers. In solidarity with you, I'm going to resume my effort to get better organized.  

I love the cracking car saying, too!

[D Foster]

Yes don't you forget we are all here for you. Take care.

[KatT]

Thank you all 

Can't wait to get over the shock APS caused....I feel like I'm on an emotional rollercoaster ride....it's draining.

GP appointment is tomorrow 

I am the same way for paperwork....my work desk is a mess....I would rather take the time to answer inquiries, work on projects, other things that take the time to clean my desk....as long as you know where things are in the clutter, it's all good