Conductor's having problems--hopefully short-term...Conductor
While I still plan to regularly read and respond as much as possible, I thought I would take Fabby's advice by asking for support when I need it. There are many people I should mention who would offer their kind help, but it would take up more space than is practical!
As many of you know, I have Systemic Lupus and the Lupus Anticoagulant. This causes me to have seizures and tremors in addition to the enjoyable pain. Right now, I am having some severe problems when it comes to "shaking". In fact, I find it hard to type without making a tremendous amount of errors. I'll just complain, but I promise to "get over it" quickly.
I am hopeful and prayerful that this will be a short-, short-, short-term experience!
Thank you for listening to me!
Sincerely,
Jon (Conductor)
P.S. Perhaps this will allow others to get a word or two in edgewise!
Re: Conductor's having problems--hopefully short-term...Conductor
Hey Buddy!
I hope you can get thru this with your usual wonderful ability to be your wonderful self.
You always have so much to give to others, and I really hope that you realize that we all are here for you in spirit to help you thru whatever hard times you are experiencing.
You are such an asset to this board and such a great friend to everyone here. Im really bummed going to sleep tonite knowing that you are struggling, and Im glad you spoke up as I wouldnt be able to get good rest knowing that you needed support and I didnt add you to my list of prayers.
I hope you rest well, and look forward to hearing how you are doing in the morning. I hope you awake hearing the birds chirping, and your body feels better after having a restful nights sleep~
You are in my prayers and thoughts always, Jon~
xoxoxoxo,
IZZY'SMOM
Re: Conductor's having problems--hopefully short-term...Conductor
conductor:
I am sending positive thoughts your way and will pray for you. I wonder if this might have anything to do with the terrible fall that you had some months back. It's a thought? You have really been a great guy and given me advice and helped to keep me focused on what I should be doing or not doing. I really think of you as a friend and it hurts to see your friends hurting(at least more than usual) you can get through this and we will be here for you. don't worry if you are not spelling things correctly ok.
Re: Conductor's having problems--hopefully short-term...Conductor
Dear Brian,
It has occurred to me--certainly--that my injury could have/probably has something to do with this! Even though I had a recent check-up (follow-up or whatever), I'm becoming increasingly irritated with the entire lot of it!!
It won't be long until it will be an entire year since that "hellacious" experience. Greatly, I appreciate the fact that you recall the incident. Many others remember it, I'm sure, but I am full of gratitude to you--my friend, Brian--that you specifically remember it. It happened on June 1, 2007.
Bluntly, I do not have all that much memory from when I was in the hospital--but I apparently acted very inappropriately during my 12- to 13-day stay in the hospital. I said some of the most crass "things" while I was in the hospital! While it isn't out of my realm to state improper assertions on occassion--I usually don't go out of my way to do so--particularly when I'm seeking help!!!
From what my family told me, I said some of the most crude statements since I was in mid-puberty. They didn't state it quite that way, but that's what they meant!
While I've had difficulty with many "things", I am utterly thankful for the help you all have provided. Bluntly, it may be a few days until I sign on again! Thank you for your tremendous kindness and generosity.
Re: Conductor's having problems--hopefully short-term...Conductor
Jon, I was wondering why you were not posting as much. Darn it, I should have realized that something was up! I must imagine having the seizures must be very frightening. I pray that you are surrounded by family so that someone is close by if you are in need.
Please take care of yourself and know that I will pray for you and put my prayer warriors at church along with the pastors to work praying for you as well. I believe strongly in the power of prayer.
Re: Conductor's having problems--hopefully short-term...Conductor
Conductor,
I am sorry to here that your going through a bad period. I know you have responded to many of my posts inthe past and I wanted to tell you that I will say some prayers for you. I hope that this period will pass quickly for you and you will start to feel better soon.
Re: Conductor's having problems--hopefully short-term...Conductor
it is a bummer when dealing with tremors constant or once in a while. Sometimes beta blockers or topamax helps but not always. Most of the time when it is really bad just wait till it passes.
Have you done any diary work to see if their are triggers?
There are simple things i have done to deal with live with tremors. I avoid glass plates/glasses. Found some voice recognition software. Have finger food fixed ready in fridge so if i have to eat then i can. Mugs with lids.
Any way thinking good thoughts for you soft hugals
Z
Re: Conductor's having problems--hopefully short-term...Conductor
Jon- Sorry that you're going through this....Hope you start to get some relief. I miss your posts, but please don't rush back until you're ready. Take care.
Re: Conductor's having problems--hopefully short-term...Conductor
Jon
this is not a secret how devastating to leave with Lupus. Now I learned you have seizures and tremors... My heart goes out to you...
First time in my life i experienced seizures a month ago due to Fentanyl patch reaction and I still remember how scared I was, for you it happens more often, I can't say how sorry I am.
Just know we are here for you 24/7, come when you feel you need to talk, we are always here for you.
And I hope you will feel better soon, best of luck to you!
Re: Conductor's having problems--hopefully short-term...Conductor
My one reply for the day!
I am so, so fortunate to live with my Mom and Dad, who are so good to me. They take such good care of me when it comes to this "crud". Furthermore, my older brother, sister-in-law, and their three sons (my wonderful nephews) are just a stone's throw away--they treat me very well, too! We have a full family meal almost every Sunday at lunch, and they (and I mean all of them) hug me each time. That means a great deal to me.
Now...to address you all. I feel like I receive hugs from you all, too. Certainly, I wish I didn't require the attention I am currently needing!
Yes, seizures blow! The worst parts are the tongue-biting (and related pain) and the muscular pain from the tonic-clonic stuff.
Thank you ALL for being so kind to me. I am confident that this will resolve itself soon!!
Re: Conductor's having problems--hopefully short-term...Conductor
Jon,
This is awful.
And I completely missed this thread until just now. I've been so absorbed in my own struggles I selfishly didn't even see what was going on with you. I'm sorry buddy. I wish I could just be there with you, but it sounds like you may have one of the best support systems on earth.
I will pray for you Jon, that the Lord will ease your suffering and that you will actually feel comforted by Him and drawn to His side.
I have been experiencing brief myoclonic type seizures lately and, as easy as they are compared to what you are suffering, I still hate them. Mine make me feel like I've been hit by a two-by-four across the head and i can't even imagine how yours make you feel.
Re: Conductor's having problems--hopefully short-term...Conductor
Jon, I am so sorry you have to go through this, I hope it passes quickly.
I am glad you have your family support, that is priceless & I am sure it brings you comfort. Sending out prayers that you are better soon. Sammy
Re: Conductor's having problems--hopefully short-term...Conductor
Jon: I'm sorry you are struggling so right now. I am sorry I haven't posted sooner, but my house was full of visiting family from last Thursday till Sunday night and I am just now finding time to sit down and do some reading. I sure have missed things. I just wanted to let you know that I am thinking of you and most certainly praying for you and even though I was "away" for a few days, I am always here on the board in spirit.
You have always been so very kind to me and to the others here. You have taught me many things about hope and perseverence. I pray this will only be a temporary set-back for you. I do miss your posts, but I also understand that it can be difficult to keep up with this, especially when you are not feeling well. Please don't ever feel bad about asking for support. As so many have already said, this is the best place to come, aside from our family and friends, to get support.
I can't really add much in terms of advice, but I just wanted you to know how much I appreciate you and care about you. So many of your posts can bring me a chuckle and a smile. And many times, remind me that I only need to fall gently back on my faith to get me through.
Please take care and know I am among the many others here that are praying for you and wishing you a quick return to your "old self". God Bless you and send you peace of mind and body. Your friend, cmpgirl ((((Jon))))
Re: Conductor's having problems--hopefully short-term...Conductor
Jon,
after reading your post about your family and how much love and support you get from them, I told myself: he will be just fine.
Personally, i do believe in family, I believe in strong family supports. That is what helping me and many others who is lucky enough to have a good family.
You are the lucky one and I am very-very happy for you that in your uneasy ordeal you are not alone. Love makes a big difference in our lives, that is what makes people go on, having hope and so much to leave for.
you can get through this and we will be here for you. don't worry if you are not spelling things correctly ok.
