OT September Chit Chat

[SalpalSally]

A big hug for ((((((Joan))))))

[agate]

Joan, I'm sorry to hear that you've been having a rough time. Breaking both ankles must have been really bad news.

If the ankle fractures were in February of 2012, that really isn't very long for allowing yourself to bounce back. I'm talking about "MS time" here of course.

Every time I've had a fracture, I'd say it took me at least a year to get over the MS setback that seemed to be part of the trauma.

Give it time. Your core strength might get better. Are you having any PT?

The accessible house sounds exciting. You get to have a say-so in the plans? That's really ideal. I hope you'll be able to move in soon.

What are you selling on Etsy? Will you post a link in your Profile?

[nuthatch]

Thanks for the hug, Sally. Sending one back at ya! ((((Sally))))

Agate (I'll never forget your name . . . I've never known another Joan!)
Since I could not stand or put any weight on the ankles while they healed, my knees got weaker and they seem to have forgotten how to lock, which is the only way I could stand before anyway, by locking my knees.
When the doctor told me my ankles were okay to do some weight bearing, I tried standing by elevating my electric chair, and then sliding out holding onto the floor to ceiling pole that is installed next to my bed. (stripper pole? . . . fat chance!) I found that my knees did not lock or have the strength to hold me up, but rather did a nice slow-motion buckle. I strained my biceps muscle in my left arm, trying to keep from going all the way down, while my husband lowered my elevated chair for me so I could get back into it.
That was a couple of months ago and to this day, whenever I reach to my left, or reach up with my left arm, I get a severe cramp in my biceps. The only way I can describe it is it's like getting a charlie horse in you leg, only it's in my arm. It brings tears to my eyes, and can last for 5 minutes. OUCH!!
I did have some PT after the fractures, but that was for arm strength only, since I was already confined to a wheelchair before all this happened. The physical therapist told me to not overdo it since muscle injuries can take over a year to heal!
Well, I guess I injured my biceps, but it was either hold on or fracture my ankles all over again. The memory of the pain of the ankle fiasco was all too fresh, so instinct said to hold on no matter what. I had no idea I'd mess up my biceps instead. Talk about adding insult to injury!!!
The torso weakness is recent, don't know why.

The new house is being designed to be wheelchair friendly and comfortable for both my husband and myself, with an eye to any future needs that may arise. Aging in place is the name of the game! I'm doing lots of the planning myself, now I just need a large money tree!
Put the shop link in my profile if you want a peek.

Joan

[Frog42]

I haven't been online for a while and come back to see what terrible luck some of you have been having! Jeanie, Joan, Gary I am so sorry for what you're going through.

I'm sure I've missed someone but I've been in the hospital for a week with MRSA myself. There must be some kind of major bad vibe going on right now for some reason. Sigh.

[Gabriella7]

So Sorry....

Gary, I just read the news about your house fire. I am so sorry to hear this has happened to you. It must be a nightmare to go through something like this. I am thankful that you all got out alive. That is the main thing ....so take care of you and yours....and I wish you blessings for the future as you deal with all the ramifications this will entail.

Gabriella

[Cherie]

Jendi,
Nice to see you back and have you catch us up on what is going on.

Joan,
Do you do any kind of exercise to strengthen your core while in the chair? the NMSS has a couple of really good booklets that address this and are free for the asking. Also it sounds like a PT appointment might be helpful now with a personal plan developed with and for you. Even though I am doing quite well at this point, I still go at least once a year for gait evaluation and review of my home exercise program to see if things need tweaking.

Gary,
It's been almost a week since we spoke on the phone and I am not even sure you are getting access to the NET. Hope Trish is improving.

It's cooling off here in Southeastern NE. Nights are in the upper 40s to lower 50s and day temps today are upper 60s. We're due for rain the next couple days. Trying to decide whether to bring plants in yet. It's early but it feels so cool the past couple mornings when I have wakened that I am thinking I don't want to stress them too much.

My Dad is back to driving and not using his cane or walker (all against Dr advice). He is going to live life fully and not allow himself to act like an invalid. He refuses to look at any downsides to his actions as he is of a mindset that this will only give credence to the cancer and give it permission to remain and grow. Unfortunately, all of his children and several of his friends have noticed mental status changes (possible metastises to the brain) , poor judgement, mood swings. After speaking with him today, I am fighting feeling down myself. I mean ...really fighting it.

Blessings to all. Holding those that need to be held.

[Gabriella7]

Fall weather

The temps here are getting cooler too. Daytime temps are to be in the mid 70's this week with rain for the next two days. It is a very welcome change. My husband still doesn't have a firm diagnosis other than "motor neuron disease". If one googles that phrase you get ALS (Lou Gehrigs disease). The neuro referred him back to the PCP whom we saw last week. He ordered swallowing x-rays with barium. The PCP then referred him back to the neuro. It's a new game called "Pass the patient back and forth".

We scheduled a visit with orthopedics because of his bending over and we will go tomorrow. He just wants to get a back brace in the hopes of playing golf again. I don't see that as possible but I want him to keep his hopes up so I am encouraging him all the way. We have an appointment scheduled with the neuro on Oct 1st. If he cannot come up with a diagnosis or other tests that need to be run we are considering going to Mayo Clinic as they claim to be able to have a diagnosis in 2-3 days.

Hope all who are dealing with serious problems find peace and comfort in their lives even if there are no answers yet.

Gabriella

[agate]

Happy Rosh Hashana to all who observe it!

Joan, I looked at your Etsy shop, and your jewelry looks handsome and original to me--low shipping costs too! I wish you luck with your store. The macrame butterfly bracelets, a pair for two little girls, are especially attractive, I think.

Gabriella, people travel long distances just to go to the Mayo Clinic. My DIL's father just made two trips there, from South Dakota. I hope your husband doesn't have ALS and will get some answers soon.

Frog42, I hope they can get the MRSA under control. A week in the hospital with it must have been miserable.

Cherie, that's sad about your father. It sounds as if talking to him didn't help much.

...In case you missed it, Cherie has developed an interesting diet and describes it here:

Only registered and activated users can see links., Click Here To Register...

Since they say you are what you eat, it's probably important to watch what we're eating.

[Jeanie Z]

:) Hi everyone. All of you are in my prayers daily.

David has been on thechemo Nexavar 2 weeks now. He has blisters on his fingers and heels and soles of his feet. Not little blisters either. It is painful to look at them. David cut some aloe fronds and is putting the aloe juice on them. He also has neck and hip pain. All of these are given as possible side effects. We were hoping he would not get the worst ones.

The only pain meds he can use that are not detoxed in the liver are morphine and dilaudid. His hip and neck and blisters make it necessary to take the pain meds then he has to take a laxative to keep from being constipated.

I am still bad with sinusitis and saw the doctor on Monday and am on Keflex and a mucus thinner now. I am sick of coughing.

Mother is still in rehab. Bill (the family friend who helps her) has been to visit each day andd is taking care of the dog, mail bills, etc.

Peg Happy Birthday Saturday.

Please keep us in your prayers. Thanks. Jeanie :)

[Whisper]

Sorry to hear about the fire Gary...all my best to you and Trish.

[Gary]

Hi folks,
Just dropping by to say hello. We have some wonderful friends and relatives. Many relatives that I haven't spoken to in years have offered their help with our fire situation. Friends here on BT have stepped up. Neighbors and friends around here have offered their help. Even our insurance adjuster has been a great help. It makes a bad situation better. Thanks to EVERYONE!!

Nothing new to report other than they finished the investigation and we are beginning to get bids and we have not decided what type of house we are going to go with. We are leaning towards a manufactured home both for the cost and for the time frame,either way I am figuring 4 to 6 months. My family has suggested that once construction starts I should stay away I need to learn that "almost" is good enough. I found a fairly large motorhome for sale its not the greatest looking thing but I am going to submit the cost to the insurance as I carry coverage for some temporary housing.

MS is ramping up probably due to stress. I am trying to deal with one thing at a time. I also keep reminding myself that everything we lost is just "stuff". I need to motivate myself to get moving but it is much easier to surf the net than to get something accomplished. Just major stress and depression nothing to worry about. My wife's breathing had improved with medication but now the air quality is extremely bad due to high pressure holding smoke from all the huge brush/forest fires through out the area.

Thanks again everybody.

Edited to add: Hi Jendie glad to see you back!

[stillstANNding]

Hi all. I hope all the situational "fires" in our lives are calming down and being put out. Good to see Whisper. Gary, as a person w MS I don't think I could go through what you are enduring. Same for Jeanie. So many here having a difficult time or someone they love is.

I'm back from a schedule neuro visit. I actually had no neuro as mine is on sabbatical and the stand in also left. The original has extended sabbatical for "at least" another year. So, I was happy that the new fellow I saw today has an attending back-up that I like and also met today. Nice to have docs again.:)

We talked about the new oral drugs. The only one I am interested in is BG12. Not for now but as my "go to" drug if I should need one. It sounds great and has been used in Europe for psoriasis so has a good safety record already.

I also asked the attending about giving Copaxone less than every day. She thought for me, at this time, that would be OK. Small studies show no or very little difference she said. I don't plan this now but the legs have been through 5 years of A, 5 of R, and in 6th year of C. So, my plan is to decrease to less than every day when legs tell me to and if that doesn't work we will go to BG-12.

And, I get to go back to PT:) And I gave 6 tubes of blood to 2 immunology researchers- for the greater good. Let's hope it helps.
ANN

[agate]

Gary, as a person w MS I don't think I could go through what you are enduring. Same for Jeanie. So many here having a difficult time or someone they love is.

I can only echo this, ANN!

Good to see you back, Lorraine.

[Cherie]

Oh...my friends...

Gary,
You do need to stand clear once the adjusters have made decisions and helped set the reconstruction phase in place. I know that is hard for you but it is necessary for your health and Trish's health and your family's sanity.

Gabriella...I think of you often and pray for you and your husband at least daily.

ANN
I agree that BG-12 seems promising for those of us who have matured through the other drugs and might need a break to repair skin and keep MS under control.


Agate,
Thanks for the suggestion that we are what we eat. These changes for me have taken years to actualize but are bearing fruit in the form of better over all health and better function and fewer MS related symptoms. I do not , for a moment, think this is an MS Diet but I know that this form of eating has worked for me personally as far as improving my overall general state of health.

Jeanie,
Continuing to hold you and David and your mom...


Nuthatch Joan...
Two words...Physical therapy! Please consult and form a plan that works for you...not a template for THEM!!!!


One of our business associates brought in a loaf of challah yesterday and we had the most wonderful French Toast from it today! My husband is a happy camper on that front. On another front...he has passed several kidney stones from the right kidney in the past month and diagnostic imaging has shown a huge stone in the lower left kidney. Yesterday it was "blasted" and we expect to see gravel passing for several days or weeks and some blood as well. He is not following DR instructions to go face down belly down for30 minutes twice a day. Tonight I got him in position and worked on the kidney area massaging and working the area and he is finally seeing some result of return of gravel.

Work is intensifying and becoming more satisfying at the same time. Our Real Estate "Family" is beginning to trust me to manage transactions and the office , for the first time ever is seeing more transactions coming through the office I am now in than ever before in the 5 years since my position was created. I think some of this is because they know me as "office family" and partly because I have shown that I am a professional that can get them through difficult transactions. This is nearly three months now and in the past 2 days, I have gotten 3 new files to manage, The office has never had this many files managed by a transaction Manager Office ever in the 6 years they have had someone in this position.

Who would have thought a nurse would end up doing the Real Estate Minutia?

Mom and Dad are troubling. Both seem to be making decisions and choices that are questionable. Sibilings are emailing and calling and asking me to intervene. Calls to parents are not giving the desired results and they are voicing their need to be independent of others making decisions for them. Difficult.

Blessings to all of you

[agate]

Happy Birthday to Pegakafarmgirl!

Today is Peg's birthday.

HAPPY BIRTHDAY, PEG!