Spring into summer and normalcy

[Tom]

Been out for a while! Back in March I was talking about de winterizing the camper and going to the camp ground.

My wife says she wants to clean it and stock it before we go but its still too cold to camp according to her, but not me!
In early April. I have plans to move a fence line, 6 post and since Im on oxygen, the sons, I have 4 grown, said they would put the fence in for me when they can get together. I wanted a shelter for my meat smoker and since my wife didn't want to get the camper ready until it warmed little more, I went out and tried to do what used to be normal things for me!
I decided to dig post holes!
I got 1 dug in after nearly 2 hrs. of digging and resting, I set one post at 40 inches deep!

I went to digging the second post and it took me 3 days to get 36 inches and my wife met me at the house door on the third day and asked what I thought I was trying to do? I told her that I was digging post holes for the fence and smoker shelter! I in turn, asked her What she was doing and she said she was going to clean the camper and I should come in and rest with the oxygen ! I just smiled and complied for an hour but shed some tears after she was away from the house when later I went out to back the truck up to the camper!

I had an appointment with my oncologist that week and I told him what I had done and that the pulmo told me to stop working because I have passed the stage where my lungs can't keep up and to walk for exercise! Those that know me knows that I am independent and when I want something done I want it done now, and my way! The oncologist looked at my chart and saw the osteoporosis and couldn't believe that I didn't break my shoulders while stabbing that post hole digger in the ground!
He knows me best I guess because he treated me for stage 4 cancer and never stopped doing my life as I pleased!
Now here's the truth of the thing, I am a self starter and like my independence but I know and learn each day that my life has changed!

Since 2000 when I broke my back and then in 2006 when I started my cancer journey to the diabetes and then eventually Wegeners with my lungs destroyed, I try to find my new normal everyday!
I have told the Drs that I want total honesty with regard to my over all health and my COPD and have asked how long I could expect with the best case scenario. Im told 10 years may not be possible but with no crystal ball there is no answer except he doesn't think in 10 years I will have an appreciative quality of life at the the stage Im at!
So with that thought, I still do what I want every day and when asked about if a particular thing is normal, I just say that this moment is normal for me and I have no other normal that I recall because its been so long since I was healthy and un inciumbered by WEGENERS,or cancer side effects or a broken back and no diabetes!
So at age 59, I still cry for maybe 5 minutes and the wife and I talk when I know that my lung disease has advanced, I then move on to my next normalcy! I love life but when my time comes, I will be ready in body and spirit and hope its many years from now!
this is an off topic forums so I need to share to relieve some stress and I cant lie and say there is none!
Everyone live in the moment!

[Debbie C]

Tom, I am so sorry to hear your lungs are in such bad shape. Is there any way you can get on a transplant list ? Your wife is right about digging the posts holes. You have 4 grown boys ,get there butts together and let them do it. Get your camper together and take that trip and enjoy the time with your wife, you can't do anything if your break your shoulders...so like it or not you need to depend on others to do what you can no longer do. I know how you feel ( although my lungs aren't that bad ..yet ) We are the same age and I also want thngs done when I want them done and in turn I also end up overdueing it and usually will strain my chest and have a hard time breathing for weeks,its not worth it. You need to do what you said in your last line..Live in the moment and enjoy life...Take care

[renidrag]

Good to let it go Tom, certainly can relate to what you do and why you do it. I have had to give up a lot, LOT, of independence since 2009. Any time I want to do something my wife will say she will get the boys to do it. Not the point. I want to do it.. in reality I can't or should not. Not how I was brought up nor how I think. Anyway my new normal is always changing. Good luck to you.
Dale

[Jaha]

Tom,
I really admire your honesty and straight forwardness, some don't really get it and want to candy coat everything. I like you want things done when I want them done and I want to do them. This stubbornness gets me in some real predicaments at times. I also have bad lungs and neuropathy that effects my hands badly, which leaves me very limited at doing physical things at times. I'm really glad that you came back online with us, I have been wondering about how you were doing. I think I remember that you also have COPD along with your Wegener's, is that correct. I asked one of my doctors which one was going to kill me first at one time and they didn't answer me, but I really wanted to know. I try real hard to live one day at a time but it is really hard, when you keep running into road blocks. I'm glad you are venting and it sounds like you are able to keep on keep'n on, no matter what each storm brings you. I'm wishing you lots of relaxing, happy days to come in that camper. Take care and keep us up to date on those camping trips.:hug2:

[Tom]

Tom,
I really admire your honesty and straight forwardness, some don't really get it and want to candy coat everything. I like you want things done when I want them done and I want to do them. This stubbornness gets me in some real predicaments at times. I also have bad lungs and neuropathy that effects my hands badly, which leaves me very limited at doing physical things at times. I'm really glad that you came back online with us, I have been wondering about how you were doing. I think I remember that you also have COPD along with your Wegener's, is that correct. I asked one of my doctors which one was going to kill me first at one time and they didn't answer me, but I really wanted to know. I try real hard to live one day at a time but it is really hard, when you keep running into road blocks. I'm glad you are venting and it sounds like you are able to keep on keep'n on, no matter what each storm brings you. I'm wishing you lots of relaxing, happy days to come in that camper. Take care and keep us up to date on those camping trips.:hug2:Hi there Jana, Yes I have COPD and that seems to be consuming me physically and mentally! I broke my back in 2000 and have a sore back daily that I live with but the body has ways of compensating for pain but it has aimed at other things like the Wegeners and the COPD!
I ask all around me to be honest and straight forward because this disease is about me so I expect to be told in terms I can understand about what is happening!
I don't know if I shared that last year, the Pulmo told me "no more work"! If I want to get some exercise that I could walk as tolerated, but I was done with any thing physical! Man, I have to say that hurt but I wanted straight up! I still try to do things and that is where I am learning new limits!
The Dr asked me at one appointment if I felt like I was living in a box and the box ,over time gets smaller and smaller and its harder to move around in that proverbial box? He hit how I was feeling dead on! I told him the box was getting smaller and there were things I had to do but I was locked in the box I call life! I pushed him for a possible outside prognosis given my lungs, He suggested I live each day which I do but I needed to have something if the lungs progress to not working at all!
I was told at start of all of this with the lungs hit by the wegs that 15 years but that was still going to be a hard row to hoe! The new Pulmo about 4 years in when I unfairly pressed him, He said he didn't think 10 years would afford me appreciative quality of life! Maybe its not fair to ask those questions but Ive seen COPD in my family as it progresses.
I want to live forever and my oncologist thinks I can because I beat cancer in 2006 and then took a big hit with Wegeners and I still keep on keep'n on and try accomplish things everyday. That might be as simple as going out to get the morning paper, but I've done something and my day will snow ball from there for reaching daily goals!
I haven't learned how to respond when some one says that if I need some help, just call! I want to say thanks but no thanks with out sounding ungrateful! That's when I crawl inside my self and want to hide! I know I cant do a lot of things but I want to do for myself!
Any thanks for the reply and I'm hoping that I can be on here in years to come and be able to talk about how they found a cure for all of this crap.
We still get in the camper and hit the camp ground and will be heading up to Wisconsin on the 16th for the small school little league World Series. My Grandson is playing in it! We have our reservations for the campground already and we are taking an extra week off from local camping to get ready for this trip! take care of your lungs and do what you need to keep them as healthy as possible
LATER

[Alysia]

Thank you for sharing Tom. Honest, genuine, touching. Totally understood. Sending hugs. Take care.

[annekat]

Tom, I'm glad you took the time to express all this and maybe blow off some steam! That's what this forum is here for. And I would encourage your wife to get the camper cleaned and stocked ASAP so you can get out and do what you really enjoy this summer!

[Jaha]

Tom,
I'm glad for your response, you really do sound a lot like me with the lung conditions and other health issues that you have had to battle. Our stubbornness just might bide us a little more time, lets pray for that anyway. I'm so glad to hear you and your family are going to take that trip to Wis. to watch your grandson play ball. Take care of yourself and enjoy every minute of your camping trip.