OT July Chit Chat

[renee]

Reinventing one's life without a longtime spouse or partner is very hard business.

I fell out of my wheelchair today- buck naked, of course- and unable to move.

Lifeline brought EMTs through the living room window.
I got a shirt on, the cat hid, a dear friend actually got a call.
Nothing broken but it sure would have been nice to have Mr Significant nearby.

Dear friend stayed with me a bit.
We laughed, we cried and we hugged.
I stayed home to wait for delayed symptoms of breakage.
Zip.

I you can't have your partner there, it sure helps to have
even a few good friends to share lives with.

The band name, "Bare Naked Ladies " kept going through my head
as well as the Beatle song that starts "She (he?)came in through the bathroom window..."

Ahhhh.
Take care of yourselves, peeps.

[agate]

renee, too bad you had a dramatic episode. At least it sounds as if you weren't injured. And that's a big plus. Nice that the cat didn't go out the door too, come to think of it.

Gabriella, Jeanie and Virginia, I think that time does its work but very slowly when we've lost someone so important to us. The horror and grief have a way of fading into the background or at least they don't stay uppermost in our minds, and one day we realize we're finding some things to smile and even laugh about again.

[SalpalSally]

Renee!!! So glad you didn't hurt anything but your pride.
Glad the police didn't come. you'd have been arrested.

Gabriella, so sorry for the sorrow and lonelyness you are
feeling. I pray that things get better for you soon..(((((hugs)))))

[Virginia]

Renee, sorry about your fall. Now that would upset me. Yes, it is nice to have a friend. I have a couple, but not any that I think would come in circumstances such as that. However, I could be wrong. I have had more friends than I knew I had these past couple of months.

I am so glad you were not hurt and I am glad you have life/alert.

[SalpalSally]

Are you OK Renee.?.

[Jeanie Z]

:) Hi everyone. I got my first dust mite allergy shot on Tuesday and gave myself the second one today. They are every third day and go up each time by 0.05 ml. So far no site reactions but no change in my coughing yet.

Renee I am glad you did not hurt yourself falling. I do no think I am able to get up off the floor without help. Luckily both my sons have cell phones so I would only have to stay on the floor until one of them could come over. Cherie your side effects do not sound good.

All the coughing has caused me to have to wear pads all the time as sometimes I cough so hard I leak. I hate cooking every night. All 4 mango trees are full of fruit. I have eaten a few, given away some and have more to cut up and put in the freezer.

My son came again this morning and mopped my whole house. I am really grateful that both sons have been so helpful. Please keep me in your prayers. You are all in my prayers. ((((Hugs)))) Jeanie :)

[Cherie]

It's been nearly 2 weeks since I have checked in and, as I read all that all of you are going through, it is hard to fathom how some of you are coping. I am so sorry and wish there was something I could say or do to help but Renee...(you do have a flair for the amazingly incredible!) sorry that happened. Glad you are essentially OK. Virginia...I just cannot imagine coping with that kind of emotional pain. Jeanie...sorry about your Mom's friend and the house and the estate and the allergies.

Did a whirlwind trip back to Upstate last weekend to take Dad to the Oncologist Tuesday. His PSA has been steadily rising since February (my last trip) and his scans last week confirm that the cancer is once again active and spreading and growing. Plus he has been having an increase in cognitive decline (early to moderate Alzheimer's) with occasional horrendous mood swings and personality shifts. Mom is barely coping. Sister Tricia (his Health Care Proxy) has been ill for over a year with still undiagnosed rheumatologic problems and is recovering from surgery to remove a kidney cancer they discovered while trying to find out why so much joint swelling and pain. Lots of family illness ongoing. Probably will have to spend the week there in three weeks when the next oncology visit is taking place.

Started Tecfidera a few weeks ago and I have to say, it is the most difficult DMT I have ever tried. Side effects are awful compared to any of the injectables. However, as I finish out the third week they are tapering off. I would not, at this point, encourage anyone to try it but will stick with it for at least another month in hopes that the side effects taper even more.

We had a couple weeks of horrendous heat and humidity with temps hitting 100 plus 5 days in a little over a week and a half of 90+ temps. Highly unusual for coastal southern New England. The past couple of days have seen a delightful change in climate with rain and temps in the low to mid 60's. ahhhh..... I appreciate it.

Newport Folk Festival starts today. David will likely end up kayaking to the center stage water side tomorrow and Sunday. Free and as good a seat as any of much higher cost. Had a great few hours with older 2 grandsons this afternoon and evening.

[renee]

I'm ok.
The next day I drove 3 1/2 hours to see my youngest bro.
It was a 24 hour visit. We had dinner at 7:30 pm and stopped talking
@ 3 a.m. He went to work at 8:30.
We ate more BBQ ribs. I headed north at 8 pm.
He's one of my best friends.

Things I learned from my bro:
1. Mick Jagger uses dental floss three times before throwing it out. ECCCHHH.
2. Airplanes need to fly into the wind for take off and landing
3. EMTs see really, really horrible things and a little nudity does not merit embarrassment

Good night and thanks for all your concern.

Newport folk fest in a sea kayak- how beautiful.
I am sooooo jealous.

[Gabriella7]

My thoughts are with everybody trying the new medications and experiencing all the side effects. Sorry about your fall, Renee. I have a close friend with MS who has started falling more frequently. I finally went back to the urologist for a recheck and I still have an infection. This has been why I have been feeling so lousy. He asked me if I knew why I passed out on Mother's day as he didn't see any reason for it. I'm taking Nitrofuraton until Wednesday when the culture will hopefully be back and we will know what antibiotic will be best to treat the infection.

I had to take Hydrocodone today as I couldn't stand the pain any longer. I find it strange that the Gabapenten doesn't work for me and the only drug that does work is Hydrocodone and it is beginning to get harder for getting a new scrip. I guess the doctors are getting reviewed more often when they write these scrips. Our newspaper has a full page ad concerning treatment for neuropathy and I plan to call to see what the treatment is Monday and will let you know if I go for treatment.

Still thinking about the re-invention of life. I went to a seminar at church this morning on spiritual warfare and have more questions than answers. Not certain I am in agreement with the presentators opinions but I will have a month to search for the answers. I was able to mention Joe without crying for the first time since he passed. I'm holding all of you close in prayer (((hugs))).

Gabriella

[renee]

Spiritual warfare. Big topic.

[SalpalSally]

Spiritual warfare. Big topic.

Yes, let's not play it out here..LOL!!

[SalpalSally]

DD finished her MS Muckfest yesterday.....down and dirty..LOL
She is a little sore today, after 5 miles of yucky road, but with
no MS repercussions. Thank you Lord. So jealous and Happy
that she was able to do it. They had a blast and raised a bunch
of money for MSS
~~~~~~~~~~~ DD IS SECOND FROM RIGHT...BOTTOM ROW.

[Cherie]

Newport folk fest in a sea kayak- how beautiful.
I am sooooo jealous.

He has gone over every year for folk and jazz by kayak. The main stage is right on the water and he says the seats and sound are as good as any of the higher priced gate seats. He has gone over with friends in their boat on occasion but generally the water off the stage is solid watercraft...literally hundreds of non-paying observers


The worst of the side effects from starting Tecfidera seem to have passed. Not that it's free of side effects but things are better. Still not as easy as an inject-able interferon to tolerate. I am hoping I can stick with it long enough for the side effects to slip into the background....or to see some peel back of MS symptoms that ramped up with the relapse in March but remain in place.

Sally,
Congrats to your daughter. That's for the kids. I have no desire even to be able to do that.

Kristof and Gregory were here for dinner Friday night. Kristof and I played several duets with him on recorder (soprano and alto) penny whistle and piano and me on flute, recorder, penny whistle or fife. We had a blast playing around with harmonies. He's really getting the hang of reading music and is not thrown off by me playing something different either in note or rhythm than what he is playing. He starts Violin early September in school and is working on getting the hang of getting a good sound out of the flute. Fingerings are so similar to soprano recorder which he has played for the entire last school year. Gregory has no interest in making music.

[Jeanie Z]

:) Hi everyone. Sally I cannot imagine even trying that mud fest your daughter did. I am glad she is doing so good.

All of you trying the new drug Cherie is taking good luck. I hope it really winds up being helpful.

I am on the third shot of dust mites for my 10 month cough they attribute to dust mite allergy. So far no reaction at the injection sites but no changes in my cough either. I did get a RX for Benzonatate 100 mg cough pearls three times a day. There too they don't stop me from coughing altogether, just maybe not as much. I am still taking Benadryl around the clock.

I am barely functional. I sleep late and get up and accomplish almost nothing. I am hurt that I discovered some things about David in his files that I knew nothing about. I gave him half my house in 95. He had a whole file about the house including surveys, etc. He also had copies of all my bank statements. Also in 2008 he apparently tried to get a mortgage and an equity loan on the house. There were letters from his bank stating he could not get a mortgage or loan unless I signed also.

I thought I knew David well after 21 years. Still he had a lot of good points and they did outnumber others. Please keep me in your prayers. You are all in mine. Jeanie :)

[SalpalSally]

Jeanie, they all have bad and good points. My DH of 35yrs, before
he died, did too. I'm just glad that the good outweighed the bad,
And that's what I dwell on, not the bad stuff.