The stress factor....

[AKmom]

I origninally wrote this as a response to a note on my messages wall but it was too long to be posted there. So I thought I might as well post here since maybe others are wondering where I have been too.

I have been better thats for sure. I have been dealing with tons of spastic spasms. I am chalking it up to the added stress I am under is causing it to be worse. Not sitting in the chair as much as I should since my hubby had surgery. I cannot get it out of the suburban by myself and he is still recovering and cannot lift anything. When the boys are with me then I use it when I can.

If you all can keep my brother in your prayers if you think of it, his pancratic cancer has come back. He was doing well after treatments but then they said they had a shortage of meds and couldn't give him a set of treatments. Yet I know another person who was taking the same treatment and had private insurance (my bro is on the obama poor man insurance) and they still got the treatment. So my bro's cancer had time to spread again and its back into the pancreas. Its not looking good. He is going to continue treatments now, but it might be too late.

So between dealing with my bro, my mom who is coming unglued over the situation, John's recovery and a new job with my company...I can only image that stress is a huge factor in how spastic I have become.

I also have had an annoying twitch on the inside of my left knee for over a week straight, and then two days ago it starting on the exact opposite knee! So now both knees are twitching, but they are extremely weak when I stand. Like they are going to give way at any minute. I have yet to fall but I do not like the way they feel and getting up to a standing position from sitting is extremely difficult. I have also noticed now that I am having to do the driving, (till John is recovered enough to drive) that it seems the gas peddle and brake are harder to push down. Like I have to put much more effort into it. This is very upsetting to me. I haven't been driving for months, but to realize now that if things continue to progress as they have been....its just hard to digest the possibilities.

I am going on a cruise to the mediterranean in 1 month and we will be gone a month! I look forward to it but am concerned that I might not be able to walk like I thought I could when we first booked it over a year ago. I have progressed so much faster it seems this past year. I want to ride a camel. I want to walk up the spanish steps. I want to see Jerusalem without bouncing on cobble stones with a pwc. Ok...I will get off my pity party. PLS stinks I get it.

 

[HelenL]

Joyce, I'm so sorry to hear that your brother is still battling the cancer... American Cancer Society has a 24 hour hotline for questions about treatments, groups, etc. their website is cancer.org I used to work there and hope they can help your family.

I know what you mean about the wobbly knees, and I have fallen a few times, the worst this summer thought I broke my toes. My "good" foot was purple for over a week, and my toes still hurt if I move them up and it was over 2 months ago. (I can't move my other toes up, so I'm just glad I can on these!)

Do you take Vit D? High doses may help a little of the twitching... also other things I use are magnets and Reiki. If there's anyone nearby that can teach you basic Reiki, it really helps calm and relax me, and you can do it anywhere! You can PM me if you want to know the details of the magnets and stuff, I don't sell it 'cause it's so expensive, but I'm laying on my magnet mattress right now!

I'm so happy for you that you're going on this trip with your hubby. And who cares if you can walk everywhere? You're there! I'm in the same boat as far as that goes... I absolutely need my scooter when I go places, I don't want to waste my energy NOT falling... just remember to bring a charger that will work in the countries you visit. Do you have leg braces yet as that will help stabilize your legs somewhat, but I find it difficult to walk with mine on uneven ground...

All of this stinks, but you're an awesome person with way too much on your plate right now... starting a new business, photography, not to mention all the health concerns... no wonder you're stressed. Don't stress about the trip, you're going to have a fabulous time!

Sending you some hugs,

Helen

 

[Alyoop]

You may find that you gain some strength when the stress dies down. I am hugely affected by stress and people being negative about my health. I found that out after spending 5 weeks without a neurologist annoying me every minute of the day. I am stronger than I was a year ago to prove it.
Stress just upsets everything, worry and fear is just as bad. Look to the holiday and believe you can do it. You will have an amazing time.
I had a friend do a medditeranian cruise last year and the days ashore can be long and tiring. Take advantage of the day tours and chose where you go carefully so that you can save energy. Instead of marching around 100 ancient ruins, sit in a little cafe beside the sea, staring into you husbands eyes, whispering sweet mornings in his ear........bliss.

Love you and I have missed you this past week. Pop in for tea, I made some nice cupcakes

 

[olly]

hi joyce,so good to see you.

firstly,i am so sorry to hear about your brother,i will most definatly keep him in my thoughts and prayers.
pls symptoms are some how connected to our emotions.........how,i dont know but anxiety ect can and do make spasms worse.
i knew you were going on a cruise soon,hopefully it will give you the rest and relaxation you need.
can you take your chair? i would think so and reccomend that you do..........i would not be able to go on holiday without one.
are you still going to the neuro in florida......at mayo?

take good care

 

[AKmom]

Hi all! Thank you for your responses. Your right, I will be ok, just been too exhausted to reign in some of my emotions on some of this. Glad I could come here and let a litte pressure off. I cannot unload here as too many people depending on me to hold it all together. Anyway, yes I will be taking the chair with me although for the most part it will only be used on the ship since most ports we are going to are old world and do not have regulations for handicap. Thus restricting what I can do greatly. I decided I will double cane it in ports and when I am on the ship rest in the chair until the next port. That and meds should help with getting through my days at port. I am really looking forward to it!

As for the neurologist afterward, nothing has been set up. I think after my first expensive trip to mayo and the fiasco that was presented with newbie doc and conflicting emg's to what the doc was saying....I am not going to spend anymore money there. I could have gone on another 30 cruise in the penthouse suite for what that waste of time cost me!

Ok...I hope you all are hanging in there. Take care!