Hi Everyone---Just Checking In

[Jen's Solitude]

Hello My Friends,

Sorry, its been so long since I last checked in, but there has been a lot going on and a lot of adjustments I have had to make. Living in a nursing home is shall we say very different from being in my own place. I am trying very hard to think positively, but sometimes it's hard to do, given the circumstances.

I am still unable to walk, my biggest victory is that I was able to sit in a wheel chair last week. I was never so happy! I hope I don't have to wait too long before I can get into one again. I am also sitting at the end of my bed with the help of my physical therapists. I look forward to the day I can
do things like sit up and sit at the edge of my bed, on my own power.

I found d out today, that I an the only one here with MS and also that I am probably the youngest person here. (61). That explains the learning curve of having to endure the insensitive, although well-meaning comments about how I need to keep active and get out of bed. Like I have a choice on bad MS days. My doctor seems to be the only one who understands that I don't always have a choice. And that I don't want to be stuck in bed.

Anyway, it has been quite an adjustment, one that I hope eventually comes to an end. How are you all doing? I sure hope I can pop in here more often.

[Lazarus]

Oh gosh I am glad I spotted this. I hope your hopes come true and you get strong enough to sit on the edge of your bed!
so, you are the youngster! How does that feel!?
I am dealing with comments and assumptions by a wonderful young woman who helps me on my farm. I have given up after many real attempts to explain to her that I may look fine but I am not fine. Frustrating as hell.

be well old friend

[agate]

At last! People have been very concerned about you! I'm so glad to find out that you're improving but sorry you are where you are. "Rome wasn't built in a day" as they say. It sounds as if you're progressing. Some days your body just won't do things, and people will just have to understand that.

You probably have to be your own advocate in situations like nursing homes that are geared toward geriatric problems--and the staff tends to know very little about neurological problems. You might find you'll need to tell them a thing or two about how MS is.

How is the food? Do you have a roommate or roommates? Hope they are OK!

With luck you'll be back home soon!

I sure hope I can pop in here more often.

Everybody here shares that hope!

[Ikoiko]

Hi, Dar! Good to hear from you and I am glad you are progressing in a positive direction.

[Sunshine 2]

It's good to hear from you Jen, and I am sorry you have had such a hard time. I have no advice, just know I am thinking about you and hoping things can improve

[Earth Mother 2 Angels]

((((((DAR)))))) ~

It is so wonderful to hear from you! We have all been thinking of you and sending you healing energy. I'm praying for your next post telling us that you sat on the side of the bed without assistance and got in the wheelchair.

Please mention to your doctor that the staff is unfamiliar with MS and ask for training for them to be able to assist you more appropriately. It could be as simple as having the staff visit on line sites associated with MS to gain a better understanding and meet your needs.

Unfortunately, nursing homes/rehab facilities tend to have a one size fits all attitude. As the youngest patient, and the only patient with MS, there, you will have to advocate for care that is outside of the box. Starting with your doctor seems to be the best venue for that advocacy.

How is your husband? Are you able to see each other or communicate via Facetime or phone? Separation is so difficult. I hope you are able to connect in some way.

Stay strong! You have a rooting section here!

Love & Light,

❤️❤️❤️❤️

Rose

*Virtual Hugs Are Germ-Free!


THANKS!

[Virginia]

DAR, I think of you and send up a prayer most every day. I am so glad to see you posting again. Being in a Nursing Home would be taxing at any age, but at your age it is really anything but pleasant. I do hope that the food is good and if you have a roommate I hope they are at least pleasant and congenial.

I wish the caretakers there knew more about MS. It is hard to take comments about what we should be doing when sitting in our own home, but to be a hostage to them in a Nursing Home is really just not the way you should have to be living. Please do as Rose suggested and "very gently" suggest that the people who take care of you learn why you are there and what MS is all about.

Just remember there are people on this board who truly care about you and if possible come on when you are physically able.

I do hope that soon you will be sitting on the side of your bed and on the foot of it under your own power.

We truly do miss you on here and hope to see you back soon.

[Howie]

Hi DAR. You are an old time to this forum, and I don't mean you are old, but you have been coming here a long time. Keep fighting, and keep in touch with us.

[Jen's Solitude]

Hello again . . . thank you all for your good wishes and messages. I do have a great room mate. We encourage each other and keep each other laughing which really helps. The food here is not to my liking which is a pity. Curt brings me food 3 times a week though. I just got home from seeing the kidney doctor. What a painful ordeal! I had to go in a stretcher and pulling me in and out of my bed was very rough on my hips and legs. The doctor said I have chronic kidney disease. It is stage 3 out of 5. But as long as I keep my bp and my diabetes controlled, I shouldn't need dialysis. At least I got some fresh air, and I got to spend time with Curt, which was great!!! Okay that is my update for now.

[agate]

Thank you for checking in! Wish you could be here more often but understand that it's difficult given your situation. Everyone here will be very relieved to hear from you!

It's great news that you have a congenial roommate. That makes a huge difference. But too bad that the food isn't edible. I've heard that if you get hungry enough you'll eat anything but I find it hard to believe. I'm so glad that at least Curt is bringing some food in for you.

I fail to understand why these places can't make serving appetizing meals their very top priority. I know it can be done. But they're not doing it.

Glad you got through the kidney doctor ordeal. I'm sorry you have chronic kidney disease but it sounds as if it can be kept under control.

We're still here at BrainTalk but you're much missed.

[Earth Mother 2 Angels]

((((((DAR)))))) ~

It is great to hear from you again, as we all think about you so often. I'm so happy for you that you have a compatible roommate. That must help to make the days go by faster. A sense of humor is support important to coping.

Your positive, hopeful approach to everything is fantastic! The food is terrible, but Curt brings you food 3 times a week. The ambulance ride was so painful, but you were with Curt. This is an excellent way to balance out the good and not-so-good aspects of your circumstances.

I hope that the rehab center knows your dietary needs at least.

While Jeanie says that the food in her rehab is tolerable, she may have just adjusted to it by now. I've never heard of any rehab/nursing center, which had delicious, well presented meals. Jim was only in a rehab (the best in the area, purportedly) for a few hours. When he told them he was vegetarian, they brought him a plate with a scoop of white rice, a scoop of mashed potatoes, and a scoop of peas.

This atrocious, because one of the main factors in healing is nutrition.

I'm happy also that you and Curt are able to see each other. Have COVID restrictions for visitors been lifted?

Sending prayers and healing, positive energy to you and Curt ~ blessings upon you both.

Love & Light,

❤️❤️❤️❤️

Rose

*Virtual Hugs Are Germ-Free!



THANKS!

[Lazarus]

Great to hear from you again…..I was wondering what Curt typically brings you!? Since I started taking Ritalin again I can’t seem to stop thinking about food…or eating.,! Help!!!

[Jen's Solitude]

Agate, thank you for always sending me such beautiful, and encouraging messages. It is so greatly appreciated!!! BTW, my room mate's name is Joan too. What a coincidence, right?

Hi Rose, yes the food is an ongoing issue with me. My family worries about me and encourages me to eat more. My sister tells me, 'just eat 4 bites' even that is too much to ask at times. Sadly, the covid restriction are still being enforced. I was told someone here tested positive, so everything has started all over again.

Laz, too funny about your desire for food, it was just the opposite for me when I took Ritalin, it really curbed my appetite. Curt tries to bring me something I will enjoy, but I have such a hard time remembering what I like. Plus my stomach has shrunk so I can't eat a normal helping anymore. I like cheese steaks, hoagies, Wendy's frosty's and their taco salad. I am trying to lengthen the list, but it is hard. LOL

[agate]

Probably a good idea to eat whatever appeals to you most, to try to get back in the eating habit. Yogurt? Ice cream? Maybe some juices? I like V8. If they're still stressing the importance of taking in plenty of fluids when kidneys are an issue, juices might be a thought.

[Lazarus]

Hey Dar,
whatisthe difference between tacos, enchiladas, empanadas …I never know!