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Posted 5/10/2009 11:26 AM (GMT 0)
I decided that I would share what is happening personally (I am trying to listen to my fellow CPers).

The Good     As some of you know, I have been overworking and paying a price. We enjoyed our largest fundraising event last night, a banquet/auction. It was grueling for the last few weeks trying to make all the plans and predict all the details that could go wrong. It was the best banquet that we have had. It exceded my expectations as we had some of our students share their personal story of freedom from addiction. I also had several mothers come in from out of state to share what it was like for a mother to see their son/daughter lost in addiction, calling from jail, stealing from them and the constant worry if they were going to physically survive. It was an exciting evening and the people who came were so tuched.

The Bad   It was a very long day and I was on my feet standing for many hours before the event and during the event since I am the one who is responsible if it did not happen as planned. I noticed that not even half way through the event, I was having trouble walking and standing and knew that after it was over there was going to be a big price to pay. I did not get home until 11PM and was drained. I tried to take a long hot shower hoping my meds would kick in and I would at least be able to lay down.

The Ugly   I confess that I did something I have not done in a long time. The pain got so bad, I increased my meds more than ever before. I could not stand, walk, sit or lie down. My wife tried to help but there was no relief. I got to the point I could not get to the bathroom and was just physically sick from the pain. I was wanting to fix my wife and family a nice dinner for mother's day but I doubt that is going to happen. I have been reading posts just to distract myself from the pain. What is so stinking rediculous is as I fight through this all I can think of is now I have ruined her mother's day. My meds are finally starting to kick in, hopefully today won't be a total loss. I am already thinking of cancelling my meetings Monday and Tuesday in hopes that I can still make it for my trial stim on Tuesday. I have fought the desire to delete this as I know it is not honor but stupitidy.

Posted 5/10/2009 12:00 PM (GMT 0)
Geeze-Louweeze FJ> Cut yousef some slack> will ya!!! You just pulled off another miracle my Sainly Friend! Just think about how many lives you may have change by disreguarding your own health for others AGAIN!!! Now as for Mothers Day, who would understand better what you have just accomplished than your Loving Wife? She sees more than anyone what you are going through and what you have done for all those who were counting on you. You my friend are the biggest pressent of all that you can give to your wife for Mother's Day! Plaease take care of yourself today and take off Monday & Tuesday! If anyone ever deserved it, you do! You are not helping your wife or family by cripling yourself, thats no present!! If your able, take your wife out for dinner, if not, maybe you can call someplace and have it delivered? There is no sence killing yourself trying to show yor wife that you love her and are thankful for the wonerful mother she is!! She knows! Please don't beat yourself up over this, it's such a little bitzy peice in the big picture!
Your Buddy,
Pete
Posted 5/10/2009 3:20 PM (GMT 0)
Right on Pete. You have said it all and brilliantly, I might add.

Fatherjohn, delivered dinner sounds like a plan to me. I love it when we order out and it is delivered. Anything to keep me off my feet from cooking. Don't worry so much, like Pete said, your wife understands and you have done a yeoman's job helping people who really needed the help. I'm with Pete, cut yourself some slack!!

Lindaloo
Posted 5/10/2009 4:00 PM (GMT 0)
Hey, FJ.

Do something really stupid. Like promise to make it up with a "Half Mother's-Day".

Find the day between this mother's day and next, and give your wife a special day in her memory. On top of that, make that day a memory of all she did to allow you and help you to bring off this dinner on her 'normal' special day.

But honestly, I agree more with the others. Your wife knows you better than anyone, and knows that this was all part of continuing to put bacon on the table as well as bring joy to hundreds if not thousands. Directly in the banquet/speeches as well as through the money raised and what it can do for those hundreds or more.

You have a LOT of reasons to be proud, and very few, I think, to feel bad.

No whining seen. And I'm not pandering.

I honestly see a wise man who made decisions and stuck by them. To his own and potentially his familly's detritment. But honestly, Father John, trust your wife to trust you. And I think you know that is right. If you need a little conviction bolstering, consider your conviction bolstered.
Posted 5/10/2009 4:01 PM (GMT 0)
fatherjohn
I am glad to see your post! You are a Human Being! You may be doing the work of a Saint, but you are only human. I think your wife understands that! You know the biggest and best gift you can give her, is just being there for her, if you show her, as much caring and compassion and understanding that you show all of us here, then your doing OK, and you should not worry! Ordering out and having it delivered sounds like a Great idea, or if you can physically tolerate it take her out to eat. But mainly just be there for her, and let her know how important and how much she means to you and everything that goes with that!
Happy Mothers Day FatherJohn!

White Beard
Posted 5/10/2009 5:21 PM (GMT 0)
Thanks all for your encouagement. My wife would be ok and probably would prefer me to stay in bed the whole day. I had bought the special ingredients for a special dinner as my son and his SO and my daughter were coming over. It is absolutely more dissapointing to me then them. They have lived with me with CP for over 11 years and they know it comes with the territory. I am sure some of you know the dissapointment of the pain interrupting you plans and desires. I am considering taking sick days for Mon. thru Wed. I will see how I am getting around tomorrow. My wife and I agreed we need to get away but a few days doen not cut it, It takes that long for me to begin to relax. We have a week schedlued for Arizona in June. I have a 3 day conference and several speaking appearances but added a couples days just for us. We might even look to fit a week off before then. I talked to my wife about a semi-retirement. I presented her with the idea that if we could add a part time staff member, I could take that job and allow someone else to take the Executive Director position. Since I am a little short of the 59 1/2 magic age, I can't start drawing on any retirement accounts. I hope by then the markey is back up and investments look a little better. Since there was nom sleep last night I hope to find some today.  

Posted 5/10/2009 5:55 PM (GMT 0)
Awe Father John, Make those days in June special and don't over do it with all the lectures, maybe cancel a lecture.
People would understand, sure hope you can get someone on a part time bases..
will say a prayer for you...
lots and lots of soft hugz...
(((((((((((((((((Father John)))))))))))))))))))))))))))))))
Posted 5/10/2009 8:27 PM (GMT 0)
Fatherjohn,
I'm late in signing on today, so I'm just getting through the posts. First, a hug,

(((((((((((((Fatherjohn)))))))))))))

I am so glad you didn't delete your post! Good for you! :-)

I hope your pain has eased a bit by now, but you really pushed yourself hard, so I am glad you are canceling today's plans. And the fact you're talking with your wife about semi-retirement, or some options, is probably a great Mother's Day present for her! You can cook that dinner another night....maybe after a successful stim. implant or pump or whatever is going to help you feel a little better in life. If it were me, a delivered pizza with a lit candle with be great!

I have a hunch you're also feeling guilty about taking extra meds. But I know you do that rarely, and i suspect if you talked witn your doctor and asked if you could do that on these rare occasions it would be ok - like needing extra BT meds. But I can see some positive learning has come from the experience. I guess maybe some of us (and I include myself here) have to hit the wall head on before we acknowledge it's right in front of us. ;-)

I really hope you do take the next couple of days off. That implant trial is important and you don't want to be so stressed you can't get a real "read" on how much it's helping. Because I think I've read others say you'll have to gauge how much it's help your pain, and if you're in abnormally high pain you might not get a fair assessment of how much the implant would help you on "normal" days, if you get what I mean.

You went above and beyond and really produced for your organization, and I know that's very meaningful to you, but now it's time to take care of you as you "try on" some things that may be extremely meaningful for your future.

Hugs,

PaLady
Posted 5/10/2009 9:34 PM (GMT 0)

PAlady, I am not feeling guilty for the meds. I think I am beyond that point. My pcp thinks the PMS is under medicating me and as you well know that can be a touchy subject to bring up to your PMS. As I don't have another option for a PMS except move back to Montana, I am carefull but I think its time to have the discussion with him, at least for something to handle those break through times. You mentioned the issue of being in too much stress so I can get a real rear on the effectiveness of the trial. That is what I am looking at as I am still registering pretty high on my pain scale and sitting in a seminar for 1 1/2 days before having the stim put in on top of where I am now could be a major mistake.

Char, I am hoping that by June, we have either the stim or a pump set up so the last few days in June will be a restful time. I find that a trip like that and sitting in seminars or even lecturing takes a toll and then it takes several days to recover. At least my wife will be in a warm climate and can worship the sun as Oregon is not known for its sunny days.

I am back in bed trying to manage the pain that is exercising its wild side. I hope that mother's day has been good to all of you. Blessings!

Posted 5/11/2009 5:12 AM (GMT 0)
John,
I think taking some time to rest before the trial is a good plan. For the trial period itself, you really need to be participating in the kinds of activities you would normally participate in or you won't get a good read. If you either over-do & go running out in the middle of the night to chase down a student or if you just lay in bed for the trial, you will not really know whether or not it is helping. The whole purpose of the SCS is to get you able to participate in more activities, so if you aren't participating you won't be able to tell.

On the other hand, the SCS is not a cure & part of its success depends on the patient being reasonable about his/her limitations post-implant. For me, I had mine in my neck & went from not being able to sit & type for more than 10 minutes without being in excruciating pain, to being able to type for up to 20-25 minutes as long as I had a special keyboard & a good chair & a properly positioned computer screen. I can reach over my head now whereas before my arms would only go as high as my shoulders. The middle range headaches that I used to get every day are pretty much gone. I still get the really, really horrible ones, but those only come a couple times a month & usually are the result of driving a lot or trying to lift more than 5 pounds. I still can't lift much. I mean, I am physically able to, but I get those nightmare headaches & the room spins & I get sick. And it doesn't matter whether it's from something stupid like trying to carry in a heavy bag of groceries or something more altruistic like trying to help an elderly neighbor re-arrange furniture. The consequence is steep (not to mention that I scared the living daylights out of the poor old woman who watched me collapse on the floor, try to get up & hit my head on the wall & then collapse again :).

I hope I don't come across as too harsh. I certainly don't mean to. But your story reminds me in some ways of my own. When I ignore what my body is trying to tell me (i.e., STOP!) then I end up losing out on all those other things that I enjoy & that are valuable to many others. Now, only you can set the priorities for your life & maybe your job needs to be your number one priority, but if that's the case, then you need to cut back on family life, friendships & such b/c it can't all be done. It just can't. The SCS does not eliminate CP nor does it cure it. All it does is mask the pain for part of the day, up to a certain point. Just like bariatric surgery, you can "override" it by doing too much & cause your disc damage, joint damage or damage to vertebrae to spread. You can further irritate nerves & tissues. So it really is important to be realize that you will still have limitations even with a successful implant. However, I & many others will attest to the fact that the SCS coupled with behavioral mod, PT & some meds can really be life-changing & makes the simple activities of daily living much more bearable than they've been in quite a while.

I do wish you the best & will be praying that you have a very successful trial this week.

blessings,
frances

Post Edited (Frances_2008) : 5/10/2009 11:16:41 PM (GMT-6)

Posted 5/11/2009 4:42 PM (GMT 0)

Hello FJ,

I enjoyed your post and how you named it, very appropriate lol. You did it, you pulled off the big fund raiser and it was a big success. I know you were sweating bullets over this too. Kuddos to you.

However, in all of the goodness you do, it is really sad to see a person get spread as thin as you do and take yourself to such inhuman limits. I am not sure there is much in the medical field that will ever improve your physical health because of the extremes your body is pushed to. Our medications, SCS's,  intrathecal pain pumps, Tens Units, things like this are nothing more than tools to help with our pain. If our bodies are not given proper rest and nourishment it needs to function all the extras in the world are really not going to help us as much as much as they normally would. Frances brought up some excellent points on what we have to do in order to make these tools work and be a success.

You mentioned in a previous post the organization you work for is a large well known one. You have obviously made your school a tremendous success. What I guess I don't understand is, if the higher ups in this organization have acknowledged your work and what you have done for this school to be a success, why do they think this can be a one man show only. I am looking at it from a management angle when I ask this question. What if something happened to you and you were not able to be there, are there no other people in this large organization that can be put in a post. Expecting one person to be there 24/7 is not realistic from a management point of view, its just not good business. I understand the part about alot of the money for the school is raised by fund raisers, donations and things of this nature. I am sure that I am missing something here and thats why I am so confused lol.

I really hope you will follow thru with taking the time off before the trial. Otherwise, I see an exhausted, pain wracked body not being able to really know if something is giving some relief because the pain levels are too far out of control.

You know, I am sure your family really does not care if you don't stand in the kitchen turning out some special dinner for them. If anything you probably make them feel guilty because you push beyond reason with this super human nature that just does not exist in a normal body. They would probably much rather see you sit down in a chair with your propped up relaxing for change. Why can you not allow yourself this simple little luxury? You know when our bodies are spent, our emotions are spent and we really are not much use to anyone. I know in my mind what your family see's you go through is not what they want to see.

I wish I had answers for you, maybe wave that magic wand we all talk about and look for, that will make things right in our lives some how. I see you in my mind as a very caring, compassionate soul, trying to make this world a better place for many people, giving to everyone, except yourself. Why can you not give to yourself some of the very thngs you give to others?  You deserve it and you must stop this guilt you place on yourself, its just not good for the soul.  

I worry about you.

Susie

Posted 5/11/2009 8:01 PM (GMT 0)
Father John,
I wanted to send well wishes on your stim, hope it goes smoothly and
that it helps and works great for you..
Post back when you can..
Lots and lots of soft hugz...
(((((((((((((((Father John)))))))))))))))))))))))))))))))))
Posted 5/12/2009 3:39 AM (GMT 0)
Hi fatherjohn,

Congratulations on the successful event! It sounds like it went well, despite the physical challenges it presented you. I am also glad to hear that you are thinking of taking some time off! You need, and deserve it! As for ruining mother's day, I doubt that. I bet your wife would enjoy the day as long as you were with her, whether or not you cooked or ordered dinner. I know it is disappointing, but sometimes there is only so much we can do. I am glad you posted. Best of luck tomorrow!

hugs,
Skeye
Posted 5/12/2009 5:16 AM (GMT 0)

Thanks every one for the words of encouragement and concern. It was a long day as I spend the day in meetings (sitting for long periods of time is so good for us). I advised them that I would be leaving early tomorrow. The comment was made, "So your surgery is at 2:00 PM and it is 45 minutes away, that means you can stay until at least 1:00. I am glad that I do this work for the students who are making such great changes in their lives and not for others who only administrate. Those people are needed but I have too much compassion. Enough of that.

I am hoping that the trial will go well, meaning that there will be some relief as to be pain free has not been in my vocabulary for too many years. I am not sure if I will be taking off for a few days or not. I have more than enough sick leave and vacation time. I am thinking that taking the rest of the week off would not be a bad thing.

Susie, those to whom I am accountable to know that having one person working so hard is not good. Th funds must be raised for staff and that is my responsibility which I don't have the time to do and the organization is not going to help as that is why I am here. Maybe not the best organizational plan but I am working hard at changing what I can. I know they wonder if my physical limitations are causing the problem but when I put in 60 plus hours a week, I think I can prove my physical limitatin is not the problem. If I did not believe in what I do, I would be looking for something else. There are some personal issues that I am not able to disclose as I support those who I am responsible to even if I don't always agree with them. Some people are business minded and others are people minded. I'll bet you cound point out which one I am. I tell people that I am not a workaholic, but a ministeraholic. The difference is the way we justify it. (still not right, ok)

Anyway, I am looking forward to a good day tomorrow and I will log in after I get home tomorrow to share all the good news with you.

Posted 5/12/2009 5:27 AM (GMT 0)
Fatherjohn,
I'll be thinking of you and sending healing thoughts and wishes for success tomorrow and throughout the trial.

(((((((((((Fatherjohn))))))))))))

BTW, I'm very surprised that the facility or doctor that's doing the procedure doesn't want you there way in advance of the surgery for any preparation activities. Sounds plausible to me.(hint) :-)

PaLady
Posted 5/12/2009 6:17 AM (GMT 0)
my wife and I were just discussing it and I wll call the first thing in the morning. Maybe I'll surprise them and leave early. I'll tell them the dr wants me to eat a big lunch before I get there. That should make them think. 

Posted 5/12/2009 8:02 PM (GMT 0)

FJ,

Here is to that big lunch you will need to eat lol, loved that idea. I do hope this is going to be the answer to some of your pain, I am praying for it anyway as many of us are. We can't help but worry about you and these insane hours you work and knowing you just trudge along at best sometimes. I truly worrry about your body quitting on you. By the way, has your BP droppped down any. Hope this does not become an issue tomorrow with the trial. I have a long standing history of high BP. Pain can send your BP right to the moon. Keep an eye on the BP thing. Took me 3 months to get mine down & stable to have an endoscopy last Dec. The facility refused to allow it until I provided them with a letter from my dr.

Take the rest of the week off, what a wonderful idea-but will you do it? Do it for the sake of needing some down time to see if the SCS is helping.

Please let us know how things are going.....Susie

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