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Grime
03-29-2009, 06:01 AM
Last weekend I went sailing for 3 days. Did I cover up? You bet I did see new photo in my album. All this past week I've been totally exhausted like I have never been before. I spent 99% of the time out of the sun. Well yesterday I need to go to the marina for a couple of hours. I had on all my protective cloths and sunscreen.

After Lisa and I left the marina we went to the every Saturday night dinner with our marina mates. I sat there freezing and the temp was 68. Got home an all night I had night sweats.

Well Thursday I have an appointment at the VA with the dermatologist and rheumotoligist (sp) and more lab work. This will be the first time to see the rheumy since I was told I had Lupus. Lisa and I have a question list for them.

I'm learning how this stuff can kick my butt.

mountaindreamer
03-29-2009, 08:21 AM
hi david,

tell lisa hello for me...i am so glad you have her.

i know what you mean....i have always been "over active" and now, i never know when i will find myself struggling just to get back in bed.

i love to camp, but can't even imagine trying it because i am afraid that setting up camp will put me in my sleeping bag for days...and that would not be fun. ha ha ha

i so hope your dr. appt. goes well. let's keep our fingers crossed for a dr. that truly cares, and will stay with you through this tough walk.

hatlady
03-29-2009, 08:55 AM
Hi David;

Oh that "balance" is so hard to figure out. Mainly because the fulcrum (isn't that the thing-ee in the middle that holds up the teeter-totter?) keeps moving. I often find myself knocked out because I forgot and just DID for too long.

Hope you get back on your feet quickly - and that you learn to sail relaxing with the wind.

Keep up that list for the doc - I usually make 2 cc's - one to give to her, one to keep for myself. Helps me be SURE I get through all the questions...

Grime
03-29-2009, 09:21 AM
Phyllis I'll tell her when she wakes up for her nap. The one that I should be taking. :sleepy:

VA is socialized medicine and you don't always see the same doctor. My dermatologist is great. She really cares and has made it a point that I see her. My plan is to talk the the VA advocate to make sure that I always see the same doctor. Seeing a bunch of different doctors is a nightmare. They each think they have the cure and not the experience to deal with you.

Right now the limpnote (sp) in my neck is about the size of a chicken egg and very tender. Something I need to put on the list.

I've got to get back to the boat today an get some cleaning done. My family made a mess of her and you don't leave a lady dirty.

I get to be home alone tonight. Lisa is going to a slumber party with the girls from the marina. This will be great for her. All the stress with me put her to the emergency room Thursday night. She'll relax have a few to many margaritas to drink and have a blast. All the gals are in their late 40's and early 50'. They'll end up acting like grade school girls.

Have a great week all.

Angel Oliver
03-29-2009, 01:23 PM
Oh David ive not seen you for a while. Hope you feel better soon n your appointment goes well. Gentle hugs to you n Lisa.

Love
Angel.xxx

Rastagirl
03-29-2009, 02:04 PM
Hi David...

Be sure and take it easy while doing your boat cleaning duties...don't overdo it. Give yourself some extra time so you don't push it. Lupus just waits for another chance to knock us to the floor.

I hope your appointment goes well this week...sure hope the Patient Advocate can assist you in getting a little better continuity of care, at least with a Rheumotologist. Let us know how it goes.

And lastly, I hope Lisa had a wonderful time at the Slumber Party. What a fun night for the girls and a chance for Lisa to let go of some of the worry and anxiety that goes with this rotten disease. Our significant others need a break from the Lupus too, especially if they want to be on their toes and have the energy to come back and deal with the muck.

Hugs to you both,

Lori :cool2:

p.s. Thought of you yesterday when I heard one of my fav sailing songs "Southern Cross", by Crosby, Stills and Nash...

rob
03-30-2009, 06:12 AM
How are you feeling today David? I tend to over-extend myself too, and end up paying for it. it happens to all of us sooner or later. Hope you are taking it easy, and having a better day today.

Rob

Grime
03-30-2009, 06:47 AM
I think I'm feeling better today. Yesterday took another toll. I took it easy an cleaned the cockpit. After that I told Lisa I was going to the truck to get a drink. I just sat in the truck not able to get the energy to move. She got worried an came up to see what was going on. After that I just watched her clean the cabin. That's my job not her's. She takes care of the bus and I take care of the boat.

I dropped her off at the slumber party and headed home. The 26 mile drive home I was not sure if I would make it. Got home fixed me a pot pie and went to bed. I didn't sleep very good with the night sweats. I never stay in bed 12 hours.

I feel so darn useless. I'm going to get my head around this Lupus and kick it in its butt. I am not going to let it get the best of me. I've always been a hard core fighter and survivor and I'm going to fight back.

I sure hope everyone has a wonderful week.

mountaindreamer
03-30-2009, 07:21 AM
hi grime,

so hope you are having a good monday. i too get so frustrated when i feel like lupus is kicking me around. it is very difficult to sit and watch others do for you what you should be able to do. just remember, some days you will be able to do as before, and some days you have to let others help. my girls tell me that it makes them feel useful when they help. normally they feel so helpless when it comes to my health, and helping me makes them feel like they are contributing. don't know about this, but it is what i tell myself when i start to get down about feeling useless myself.

hope lisa had a great time at her slumber/margarita party....sounds absolutely marvelous...so glad she has an outlet, i know she is worried about you.

have a good week.

DrinkofWtr
03-30-2009, 02:12 PM
Those night sweats are the pits. I stayed in the sun too long this weekend barbequeing and had the night sweats too. They are so uncomfortable, aren't they?

Rastagirl
03-30-2009, 02:37 PM
That's exactly what it takes, David...a hard core fighter and survivor. That's what I am and I know that's why I'm still here.

I REFUSE TO LET LUPUS WIN!! I REFUSE TO LET IT RUIN MY LIFE!!

Yes, there are some things I have to let others do for me at times...but there's still a helluva lot of things I can and still do for myself.

When Lupus kicks my butt...makes me feel useless...I wallow in it for a day or so...and then get right back up and come out of my corner punching for all I'm worth.

:chairshot: <<<<<<< That's Lupus on the left.....It doesn't have a chance!!

Hang in there...

Fondly,

Lori :heart:

BonusMom
03-30-2009, 02:54 PM
I get to be home alone tonight. Lisa is going to a slumber party with the girls from the marina. This will be great for her. All the stress with me put her to the emergency room Thursday night. She'll relax have a few to many margaritas to drink and have a blast. All the gals are in their late 40's and early 50'. They'll end up acting like grade school girls.



A slumber party on the boat with friends and margaritas--does it get any better than that?! So glad Lisa had the opportunity to enjoy both.

As to you Grime, I am very sorry that your precautions didn't minimize the effects of the sun. How frustrating it must be for you to take the necessary steps and you're still in misery. I've not experienced the sun sensitivity (except for my eyes--the baby blues have always been sensitive to UV rays), so I'm not able to offer any words of widsom. Just know I'm disappointed for you in that in order to indulge of your passion of sailing your health is compromised.

As to the VA, my dad has been treated for lung cancer through the VA (thank you all for your service to the USA). His specialists have remained the same throughout. If you have a chronic illness isn't there a way to see the same specialist consistently? I'm hoping the advocate (or Rob's sis) can give you some guidance. You served your country with pride and dignity. Your health care should give you the same.

Hope you feel better soon.

mountaindreamer
03-30-2009, 03:19 PM
good job lori,

your attitude along with the little guy wacking the other with a chair, and lupus does not stand a chance.

i feel badly that i have been negative lately with my posts. i am battling a heart situation and waiting for an ablasion (sp). my heart rate runs crazy then slows down to the 30s. the back and forth has me really having to fight for energy which i am loosing. this heart stuff also has my fibromyalgia running crazy, i am sure the lupus is jumping in there somewhere, and i have really just felt lousy....even my little dog Roscoe is not real happy with me lately.

to everyone on the forum....what lori posted is absolutely the only option for taking on our various illnesses whatever the diagnosis. so glad that we have some proud military buffs among us. you guys can help us arm ourselves with chairs .

However, it is ok if (like david) the disease kicks our butt for a while....we will always be back, and we will enjoy the good times with new respect.

so to all of you, please ignore my negative stuff, i won't be down long,

Grime
03-30-2009, 08:08 PM
Boy the girls had a blast yesterday. It was almost noon before Lisa called for me to pick her up. She really need yesterday and I am so thankful that she now has the friends that she has always wanted and needed.

Bonusmon,
Thank your dad for me for his service to the great country. It is good to know that maybe this time I wont be lost in the system as I have been in the past.

Phyllis,
Its ok to be negative because we are here to listen. I know I want always be so positive and will come here for encouragement to make it thought another day.

I had a great day today. On the way to pick up Lisa, Charlie called, my sailing mentor, to come to his house and his wife would bring Lisa there. Charlie and I worked on the bimini frame for my boat. Got it all built and fitted. The bimini is going to cover up about 90% of the cockpit. Lisa is worried that she wont get any sun for a tan. I told her she you lay on the bow to get a tan. I'll put pictures of the new bimini in my album just as soon as its finished.

sick n tired
03-31-2009, 01:39 PM
I am not sure what I hate worse...the freezing cold or the sweats...I have that every day. There is never a time I am comfortable...
I also understand, David, about feeling so useless...we are trying to move from our house and put a wedding on and I am having a hard time packing 1 box or going out and ordering flowers...
I hope your docs can figure it out so you are back on your feet again.

lucky7
03-31-2009, 07:54 PM
Ditto Lori! Woo Hoo to those words of wisdom! I have my days, but i try to have that attitude MOST of the time!

mountaindreamer
03-31-2009, 08:08 PM
hi sickntired,

are you planning a wedding for yourself? if so, congrats to you both, and please let us know when the date is, so we can all celebrate with you.

also, congrats on the new place to live....change can be very exciting, hope this is the case. i know there is no way to move without tiring yourself,,,,so please be careful.

sick n tired
03-31-2009, 08:24 PM
No Phyllis,

The wedding is for my daughter...and hubby and I need to get the principle out of the house...my medical bills are so high....it isnt a bad move, just there is so many things going on and I am so stressed because I am not sure I will be able to get it all done in time.

mountaindreamer
03-31-2009, 08:28 PM
sickntired,

i thought you were married, but i could not remember. i now remember you telling us about having to move....so sorry, but you know, moving might remove some of the stress, in which case, you will probably really love your new home, because it will reduce the anxiety.

congrats to your daughter.....i gave my two girls weddings, and i know what you are going through...i know that whatever you do will be beautiful, and i hope you enjoy every minute.

sorry for being so mixed up on what is going on with you.....just write it off to being "loopie".

lucky7
03-31-2009, 08:51 PM
Awwww, hi Phyllis and Sickntired, just wanted to say im happy for you and for your daughter,congrats! WOW Phyllis, 2 married off! Cudos to you,daughters arent cheap are they! LOL:shock2: But we still love them!!!!:valentine4: Im having so much fun with these!!!!

sick n tired
03-31-2009, 09:03 PM
Hey Phyllis,

We have another wedding in August for another daughter.

Mountaindreamer,

I am have been married for over 26 years...the move is with hubby and the kids who are still at home.

No Lucky, Daughters aren't cheap...

Grime
04-01-2009, 02:09 PM
I love weddings. Give me a chance to cry and no one will mind a grown man crying.

We have a wedding to go to on May 3rd. One of our dock mates brother is getting married. It going to be a pj wedding. They are getting married on a yacht at sunrise in pj's and we all have to ware pj's and people think I'm nuts. Oh well I have to buy me some. I don't think jean classify as pj's. Maybe I'll even post some wedding photos so all can have a good laugh.

That reminds me I need to put some on from Halloween.

Angel Oliver
04-01-2009, 03:27 PM
Oh wow that sounds fab.Carnt wait to see the photos.

love
Angel.xxx

lucky7
04-02-2009, 12:16 PM
26 Yrs Sickntired, I LOVE THAT! What a nice thing to hear!:yes: