Brief Update - 11/6

Thought I would post a few quick things on my situation

Still waiting for that back-pay from the VA and my first check.  According to the person at the VA while I was setting up my direct deposit on the phone, checks were cut on November 1.  Now 5 days ago, so should be showing up anytime, I hope  Future ones will be direct deposited, and he said they pay from behind.  December 1, they will cut money owed from November, and so forth

I see my oncologist 3 weeks from today, already got a pretty long list going for that visit.

This business of my hips, and now knees going "dead" on me is getting progressively worse in a hurry.  Started about 2 months ago.  First it was only right hip, but now it can happen on either hip, or both at the same time, and at times the "feeling dead" business will go from my hip to my knee.  When this happens, I have no sensation in the effected area(s), its just like someone turning off a switch inside my body.  There is no feeling, no sense of muscle control, and down I go on that side.  Happens the most often, if I am walking steady, like through a big store, or down a side walk.  Happens sometimes in the house, but rare, because the distances in the house are small and there is plenty to hold onto.

I go to PT tomorrow, and based on last time, they may order me to start using a walker.  Nothing scares a physical therapist more than having a patient fall down, serious liability issues for starters.  It's bad enough I depend on a cane constantly, the thought of being regaled to a walker is tough on my mind and pride, would make me very self conscious.  But my fear of falling and breaking a hip or something is much worse.

Pretty sure my doctor will say its the continuation of severe never damage in my body, and I doubt there is any scan that will show up the cause.  It's not a muscle or a bone issue, it simple goes dead, for just a second or two, then when it "kicks" back in, its ok for awhile.

At Sam's recently, I bet my hip gave out at least a dozen times within the space of 30 minutes.  Finally, I had to push the cart to keep myself from falling, least I can hold on with 2 hands.

MY meds right now seem to be fine.  The switch over from Lortab to Norco went pretty smooth.

Will be having my monthly free massage next week.  Though it only provides short term relief from the pain (like an hour or less), its still helps for that moment.

In general, I feel like I am still on a downhill spiral.  Fatigue continues to increase, no improvement in the pain department (aside from the meds), and still have serious sleep issues.  It's hard to be awake 19-20 hours a day when you are dealing with what I am dealing with.

I am going to ask for another PSA on this visit, not for my doctor's use, but in case the VA wants a current one.

My mental spirits are still good, but my body is continuing to go downhill, despite over 2 1/2 years of PT.  I must admit, that my ability to fight hard in my PC journey is winding down a little at the time.  I am sick and tired of being sick and tired, and trust me, if you ever had to deal with such severe CP for as long as I have (3 and 1/2 years), it just whittles you away, a piece at the time.  The only time I don't hurt is when I am sleeping, which isn't often enough.

Finally, and this is kind of optimistic all things considered, we already booked our next cruise for next October.  This one will be a 7 day eastern Caribbean, again on Carnival.  And to celebrate our upcoming 40th anniversary, we upgrade to a proper suite with balcony.  I barely made this last cruise, from all the walking and climbing, so hoping I will be in shape to actually do the next one, but at least I can have a dream in front of me to look forward to.

David

Post Edited (Purgatory) : 11/6/2013 8:52:40 AM (GMT-7)

Thanks, Phenom.

The other thing that is really helping, is my renewed interest in matters of faith. Sometimes I wish I could expound more on that strictly at my personal level - but know what would happen. Let's just say, I feel even more than ever, a need to bond my spiritual side to my physical side. I can't keep doing this alone.

David

Thanks for the update David. If the walker will help prevent a fall I am all for it. I can also relate to what you said about doing this alone. While I am with my wife and have family around there seems to be a disconnect. Socially I just cant do what I once could do. So I am looking at ways that I will feel connected to my community. Hope your check gets there today as that will lift your spirits for a bit.

Michael

It is human nature to fight these add-ons.

My Dad really resisted using a cane well into his upper 80's... until he had a bad fall. He fell on the sidewalk but actually tumbled on a bush. That broke his fall and he got severe bruising, but thankfully due to that bush nothing broken. He then realized that being stubborn won't do it. It was very difficult for him to make the decision, but once he did he never regretted it. He went to a walker at age 96 due to similar circumstances. He had PC for about 20 years, but passed away at age 98 from a rare skin cancer (Merkel Cell Carcinoma).

I guess my point is that eventually we have to make allowances.

Good luck.

Mel

There are worse things than a walker. When I get bad gout attacks I use a cane but there are times I think a walker would be better. Get the kind that has a built in seat.

Hang in there,
Andrew

Purgatory/David,

Maybe I missed it somewhere in another post, but is there some reason you don't/can't get more sleep?

I know I "only" have Lupus, but I couldn't function before I was given Trazadone as a "sleep aid". (Cross-use, it's an anti-depressant at other dosages.)

Sleeping isn't just to give you a respite from pain, but even nerves, etc get some rejuvenation from what the body does to cleanup/reset organs, etc. while we sleep. I assume you drink plenty of water and take the vitamins that support nerve function (B12, if I recall correctly).

Sailor, my good friend, I am not indicating that I am giving up or remotely giving up, just stating that with all the pain and fatigue issues, its just gets harder to fight as time goes on. Not a question of being tough or weak, or power of mind over body, just the physical reality of what I am dealing with. For starters, and I know you will understand, I will need more help from our dear friend Pio.

Michael, still no check, convinced today was the day, the VA guy told me today, it was in route, so hopefully it will show up before the end of the week. How fitting, as Monday is Veteran's Day. I am trying to re-connected after spending the last 5 years being isolated (mostly by choice, some by my condition). I am back active in the KOC (Knights of Columbus) and already been invited to become an officer and to become a 4th degree.

81, I am constantly aware of that fact, the HW gang, and its a daily part of my help for sure

Andrew, think all of us have issues of pride when it comes to walkers and canes. Took me a while just to get use to the constant use of a cane. Without it, I would be on the ground half the time. I will be talking to my doctor about this when I see him soon.

Billy - its the other way around here, it took over 36 years of marriage to convince her of the joys of being on a ship and cruising. After the first one, it made her a convert for life. We are looking forward to the full week the next time around. When she retires, then we can talk about 2 week cruises, right now, she could never get that much time off from work. I never get bored onboard, always loved anything about ships

Lynn - you just don't have Lupus, I know how serious Lupus is, first hand among the wives of some friends of mine. 2 of them are no longer living. Me and sleep goes my entire life, its only been made worse by my PC battle, pain issues, etc. I have been on Ambien for nearly 14 years now, and I take Tranxene as well, to help slow down my brain late at night. And at other times, I am simply hurting to much to relax enough to sleep. It's an issue my oncologist works closely with me, as he knows first hand, that poor sleep only makes my other problems worse

david

Purg,

The shopping cart trick is one I use on bad days. I park next to a 'corral' and grab one to use as a support to get in and back out. Everyone thinks I'm a good citizen because I bring my cart back. Little do they know.

David, I'm sorry to read about your condition update. You are in my prayers. Keep those spirits up and keep the faith !


Don

Hi David I so wish you could get some relief from all the pain you go through. I'm glad you're going to talk to your doctor about the walker. I will have you in my thoughts and prayers as always my friend.

love and hugs
Loretta

Bill,

Sounds like one real tough b.i.l. you have there. Reminds me of my neighbor, ex-Jar Head, tough as nails, his list of medical woes makes mine look pale, but he keeps on kicking. My dr. considered the botox in passing, but that works better with a working bladder, not a non-working, non-connected bladder like mine. Outside of that high risk complex surgery, that so far, not a single doctor will commit to, there is little hope of improvement in that area. I am starting to accept the fact, that the spasms are just part of the cards dealt to me, and I will just have to continue to have them. After 5 plus years, there is no getting use to them, each one hurts as much as the first ones I had years ago, but at least they don't last forever.

Polio was some bad business back when we were both young, was so common to see kids with leg braces, etc. Thank goodness its mostly been eradicated.

Hope you are doing well.

David

Dave, thanks, and for the prayers too.

I don't worry about winning or not winning the war, I may or may not, actually, I don't worry at all. My daily goal is to fight the battle of the day - fighting against the Pain Troops and the Fatigue Troops, that's enough to keep me busy on any given day. I don't allow myself to think about much long term, its enough to deal with what is in front of me.

You would love cruising, you and your wife. My wife avoided them for over 36 years of our marriage, she had a certain fear of being on the water, far from land and getting sea sick.

Last year, on our first cruise, we were the classic cruise virgins. We didn't know what we were doing, but we learned fast, and there's plenty of seasoned cruise vets to help you along the way.

My wife loves it, its all she wants to do on vacation, so as I mentioned, we already have number 3 booked and paid for. And never once, has she ever remotely gotten seasick.

This years cruise, we were more comfortable, already knew the layout of the ship by heart, and looked like experts.

Next year, upgrading to a Suite with a balcony, is going to be a blast, and a great way to celebrate our 40th.

And they don't have to be expensive. On our particular 5 day Bahamas' cruise, not counting taxes or travel insurance (a must if you are not healthy), I think it cost us around 750 bucks for the two of us.

Once you check on board, you don't have to worry about anything, not a thing, for the duration of the cruise. Everything is taken care of, and you can do as you please, when you please. We always choose "open dining" because I am a touchy eater, and didn't want to be limited to a set dining time.

Hope you all get the chance to take a cruise, pretty sure you would enjoy it.

David

Dave/Purg,
Veteran's Day is just around the corner and I'm hoping you receive the check prior to it..If you do you can forget the pain! Keep up the good fight and keep us informed. All the best to a Vietnam Vet.
Bill