Ginnie,
Thats terrible, I hate being ordered about too. When u can barely cope with the pain n suffering u just want ur family to back off n give u the space n time needed to hurt n heal... The stress on care givers is great I cared for 2 cancer sufferers and swore I would never want to go down that path again, but NEVER did I make demands on them, all I did was feed open curtains to see the sun shine and help when i was called to n left them alone when they wanted it. We need the same now, we need to feel loved n not blamed, we need to be asked not ordered and we need to know that its ok to hurt without guilt.
Im yet to start my journey Im still waiting, my partner thinks im incapable of helping him cook or clean the house, I cant do it all but im not broke enough to not help. He wants to manage my every move so his life is easy... what about mine??? My life is a minute by minute hell, he cant understand that his and my daughters worries become mine. I was cruel enough to demand that he keep his feelings to himself from now on as I have enough to deal with. Didnt get me anywhere just another argument. Now my speech is almost non existant, my throat hurts and I am really sick of being the only one that can hear me. I love him for trying to care for me I just wish he would take my lead, allow me to tell him what I need and in turn how I can help.
Ahhh the horrors of being ill and being a carer. Im ready to call a friend to come step in n take him away from me for a few days, we both need to breath before surgery.
I guess its the same for u too. Im sooo sad that ur in so much pain and unable to walk much, hoping n praying for u that ur doc gets the help u need. Sharing my angel with u
Big hugs ginnie n butterfly kisses for ur forehead to help calm u some
Cass

Hi Cass

I totally understand your frustration, but don't forget - men are wired to 'fix' things. Women 'talk', men 'do'.

If they can't fix it, then they feel useless and that may explain why he wants to do everything for you - because he feels powerless in this situation (as we all are - this is unpredictable and beyond our control).

Try writing him a letter, or getting someone you trust to talk to him. I really feel that a lot of the time partners and families are the biggest victims in this whole annnie journey. We have the power to take action, fight this, and hang on, but they just have to sit and watch it all go on around them. Often times, their world will spin out of control if something happens to us.

So, be patient, loving and kind. He is going through a massive ordeal too.

Go softly, but never give up your right to love, respect and understanding. You are right, his daughter's problems can't be yours right now - you have enough of your own.

Lyn

I did what Lynn said, I wrote a letter to my help person. I laid out exactly what was bothering me and why, and it has worked. I think Lynn had a good idea you may want to try at your house. Even to daughter, you do have enough to go through until your surgery. We sure need to talk here don't we>
After an 8 hour battle with two doctors, and lack of communication between offices I got some relief at 7 p.m. My pain specialist is a good guy, but his staff is horrible to say the least. I won't go into it, but it was very sad to be treated as if I were dishonest, or criminal. For example "why did you quit taking your medicine?" I replied it did work,, she said I didn't give it enough time, well I had been on it since the 11th of last month. NO respect at all.
I am doing alot better this morning. My biopsy came back negative, Thank God for that. I have two appts. next week, with the rest of my crew to keep my body in shape.
I do hope you have a good weekend and like football. I will be glued to the TV, even though no teams I wanted to win in the playoffs will be at the superbowl. Have some fun Cass!
Lynn, I hope you have a good week end too. I don't know you very well, but I hope to some day. ginnie

Hi Lynn,
I had tried that and yes I do understand he is under alot of strain. I was a carer as well and its a nightmare, but I didnt rush nor push. I think my partners problem is that he is a manager outside of the house n now trying to be one inside the house. I will be calling a friend as he needs to talk to someone as much as i do and he needs to get things figured in his own mind without taking them out on me. I tried taking control of a spiraling situation and realised that I just cant. Being a carer is not fun at all and not easy. I do think of him going thru this and since i have been where he is Im trying to help him help me. Of course thats not going to happen lol.

Hi Ginnie,
I do like footy but not american footy. I am gearing up for our state of origin, I hope to be able to yell at the telly come June/July and make my kids laugh. Im usually a quiet person till the footy comes on. I dont watch weekend matches but I have plenty of garden that needs tending today while the sun shines. We have had noting but constant rain for weeks now. I think 2 days in the past 3 weeks has been clear.
Anyway I wish both u lovely ladies a great weekend and whoever u barrack for Ginnie I hope u have a win. Good to hear they sorted out ur pain n feeling more at ease today
Much love n big hugs
Cass

All has finally calmed down at home... too much frustration was sorted out.

My partner was getting frustrated with me for not sitting all day long. He now understands I can help and will offer to help and Im not completely incapable and I do call out when it all becomes too much.

I had a good week this week, I managed a trip to the shops with my partner just to get out n have a walk about. We were out for about an hour when i was finally pooped and asked to go home. The following day i wanted to go up to the local shop n get some stuff for scrapbooking. The plan went well till i wanted to buy a cup of coffee and couldnt remember my pin to my card. I paniced n went to the bank in ears where i was met by a lovely Teller who organised me and sent me on my way. I enjoyed my cuppa and bought what I needed and headed back home. Because I had a big day on my own and a bit emotional too I ended up with a killer Migraine which upset my partner. we got it under control but we both now realise I simply cant go out alone for now and will have to limit trips to no more then 1 hr.
What I noticed was my speech got terribly worse when I paniced and the staff in the shops treated me as if I had a mental disorder not a speech issue, so im now setting out to create a witty T-Shirt to wear out on such occasions. A friend had also suggested I make up a couple of witty badges instead of shirts to pop on when struggling in public.
I certainly dont think and act as I did 6 months ago and I just hope it all comes back after my op.
Speaking of Op's. Since my second trip to hospital was on the day before my surgeon appointment I have been placed back to the bottom of the waiting line which means right now we dont know when I will get into see him but it looks like nothing will be happening this side of July at least. I will keep u all posted tho.
Much love n big hugs to all,
cass

woohoo I finally got another appointment quicker then expected. Im back to surgeon next wed, heres hoping I keep a cool and calm head and dont miss this one. Then the ball will be rolling and the annies on their way to being fixed.

I hope all goes well, and that you can be fixed up soon. Get that taken care of and you will feel alot better. You will be in my thoughts and prayers. ginnie

I hope your appointment goes really well - don't forget to take all of your questions. Let us know how you get on.

Regards

Lyn

Hi all,
I had my appointment today, my angiogram is being booked and will take place in a few weeks. Following that, my surgeon sits as the outpatients clinic once a month so we are looking at possibly April for next appointment with the surgeon. They are only looking at the 7mm Annie with the other 2 being put on the wait and watch program. After I have seen the surgeon then we will be looking at either coiling or clipping within 6 months of that. So I guess most of this year will be taken up with quick appointments followed by months of waiting.
At least we are moving forward. The doctors assure me that my TIA's and migraine disease arent related to the annies, but somehow I beg to differ since it all happened at the same time. They the experts tho so I have to go with what they say and hope they are right. I am not returning to work till all this is over as I feel the type of work I was doing brought all of this up in the first place.
Good news, a few steps forward, cant ask for more then that.
Big hugs to all!

Good luck Cass

I hope you get some answers and some actions soon. I am glad that you have been given some timeframes and some direction.

Cheers

Lyn