Saysusie....

Oluwa · Posted: Tue Oct 07, 2008 6:12 am Post subject:

Hi you..

I see you are back from your vacation...Welcome home....I missed you. How was it? Better than the last one? Less stress, rested....alleviated your depression. Depression hurts the body too...

Times I find just being somewhere new feeds the mind and makes me feel happy....

I do hope IT and IT's cronies gave you reprieve and the bees have left the hive.

Have you pulled out your tandem bike yet...we did a few spins for a couple of night. Not bad on my joints.

I am now dosing with Lunesta..ever try that drug. My eyes still open, wake up..but I can fall back to sleep immediately. My body feels rested with less pain now, but boy do I ever yawn...

You mentioned you've been through cancer. Am I being too personal if I ask where..its okay if you say it is...

Wow, this last biopsy was a doosie. I survived. I wrote about the event on my very first thread when I met you. I go something like this.

I am glad you have a best friend to chat up with, makes living with our disease so much better. Do you ever talk about Lupus, FMS together or all has been said. I only talk here...

When I mention an ailment, I feel like no one in my family really wants to hear of it..so I no longer say anything. They seem uncomfortable with words of illness. I speak with my husband..with him I can tell he just wants to fix it but feels frustrated because he doesn't know how.

My brother, who was here this past Spring, we are best friends...we chat up about anything and everything except IT..if we do it is mentioned in passing. We send each other surprises. State quarters we collect. I just sent him three bottles of Texas Pete Hotter Sauce...couldn't find it in Seattle. I turned him onto it, two years ago.

I hope the real estate market picks up here as I do, so much want to move. I think the weather here brings out the worse in me, in Lupus. Just like theplants here, the right condition of humidity and heat, our yard has a brown fungus. Like me with my skin. I feel dirty, with a fungi.

I thought the rash was shrinking, but I was inspected by my husband this morning. He said, nope. Just not red and the scabs healed, but it is still covering my trunk and elbows...a gazillion skin toned bumps...g-r-r-rr. Sucks for lack of a proper words... I've been having so much control over the itching. Itching made it itchier.

Hope since you've been back, life has been stress-free...enjoy the day. I am. Happy Tuesday..

Hugs full of love,
Oluwa

Saysusie · Posted: Tue Oct 07, 2008 11:24 am Post subject:

Oluwa

Yes, the week away did wonders for me emotionally. I think that I was getting rather depressed and being in constant pain with that all-over sick feeling was not helping much. The pain has subsided a bit (or could it be that I am feeling better emotionally?). Whatever the case, I am grateful for the reprieve.
We have not pulled out our tandem yet. But, hubby promises that we will. Just being out in the air makes me feel better.
By best friend is a Director of Nurses and so I can talk to her about my Lupus, Fibromyalgia, and all of my other various illnesses. She is a wealth of information, but even better, she is a very good listener and she always gives me comfort and support. I also can talk to my husband about everything. While he often tries to "fix it", most times he does just let me know that he understands. I am sorry that you do not have that, but as you said, you can always come here and talk to me and/or everyone else here. You know that we understand, we care about you and we really want to help!
I'm glad that you are getting some relief from your rash. I wish, like you, that it was gone. But, I guess that we have to have a bit more patience as it sounds as if it is healing slowly.
I had thyroid cancer. I discovered it myself (the lump) and so it was caught very early. I did have surgery to have it removed and then had to do three years of iodine treatment. I take thyroid medication daily and have bi-yearly follow-up appointments with my endocrinologist (sp?). It was quite a scare for us at the time and now, every time that I find a lump or bump on my body, I freak out. I just had a MRI on a lump on my upper right thigh that my doctor said was probably benign. But, I insisted that we find out exactly what it was before I would be able to relax about it #Mad

So, we'll see in approximately 10 days!
I think that I'll ask my doctor about Lunesta. I had to stop taking the sleep medication that she prescribed because it was aggravating my migraines. I won't mind the yawning if I can get some rest with less pain.
I hope that your day goes well and that you have another restful night!
Talk to you tomorrow..................

Peace and Blessings
Saysusie
_________________
Look For The Good and Praise It!

Oluwa · Posted: Wed Oct 08, 2008 7:30 am Post subject:

Hi you...

Lumps bumps, with Lupus.... so many things to cause fears in us..especially since you have been through cancer. I am so thankful you found it early and treatment was a success.

A disease that causes so much fear...we need reassurance, medical evidence that future lumps and bumps are benign. Prayers go out from me for you... It will be benign. Head hug...

I am happy to know you are finding an emotional better. Young, old, experience of many years or a few months with the disease is hard on all of us. I think the difference as we live with it longer, age...we just become more experience, more articulate in knowing, describing our pain. Knowing the cause..but I think the mental hurt, the hurt spirit is the same. And with more experience we learn to find ways out of the stupid hole. I fall in, I teeter at the edge..but most of the time I am just a foot away.

Do you think you are feeling blue as Lauri's Birthday approaches Friday....hugs. I wish I could say something to soften the sadness. I hope you are able to celebrate her life, her day and not feel a sad mourning. I am here, tell me of her wonderful smile, how she giggle...what was her craziest birthday....

Yes, do give the Lunesta a whirl. It says it is a non-narcotic sleeping pill and has a low dependency. They suggest not to flat out stop it when taking long term. Unlike Ambien's take it as needed....with Lunestra I was told it is taken nightly, which I was prescribed tooo. Stopping cold, turkey, if you will, doesn't create insomnia like the others would...so I was told... Also you get refills, unlike Ambien I was only prescribed the one... without refills.

Today I didn't wake with the yawnies..but my body does feel so much better. My attitude doesn't feel so grim...I see there is a big connection of finding the sleep, sleeping to heal the blues, the pains and aches.

The rash..I am trying to have complete restraint. As long as I don't itch it it it doesn't worsen. Heals but the bumps are still there. I just haven't scratch them off. When I have skin to skin contact it burns. I may go in for that biopsy with my PCP or I'm debating it with... see a dermatologist and wait the usual wait...5 -6 weeks...g-g-g-r-rr-.

I just solved the debate..I just called my PCP..tomorrow at 12:10.

I keep thinking what if it is an infection of sorts. I have it on my left eyelid too...it isn't psoriasis, not scales or plaques. Like sand paper. Hard little bumps, like blisters...when I scratch them they leave a hole. So, I have this pinhead size hole in masses...but they have scabbed over and now are healing...crazy...

Do you live by leaf bearing trees that turn in the winter...or with no frost is the change of color just dormant yellow, to brown to dead? Here, last year they changed, even had some reds, but two prior falls, then went just to dead yellow. Falls are ugly here...

I realized yesterday why I feel so like a cat in a cage, despite driving, going to the parks. It is because my eyes can only see short distance because of the landscape.. there is nothing. Flat, filled with trees. I miss seeing past the block, seeing the mountains above, seeing the water, The Puget Sound below..so much for the eye to see...besides the rear lights of the car in front of you or the next block of trees that block the sky view, what is in the horizon?

You don't see the sun setting or rising off in the distance, unless up on the highway bridges. It sets behind your backyards trees... I miss open, rolling hills filled with homes, the Cascades framing the city, the burbs, the city's skyline...water, lakes....Ones' eyes can see so far without an interruption of trees..anywhere, just like a postcard...

Driving through Seattle, to the East side...north..west...it is like a photo album, turning a page, a breathtaking view with each mile...and never the same. The view seem infinite, her in SC it just ends abruptly. Being such a visual aroused person...it suffocates my spirit. Soon, soon as soon as the market goes up.

I think to go visit, but I feel it will be such a tease and it would be harder to return to SC. My husband is talking about a skiing trip there...he loves Snoqualmie Pass. If I did need a dose of home, I would really like to go in May. I suggested Denver for a January holiday...or he set up a weekend trip to Denver with his colleagues as I don't ski...

The UP reminds me of a small version of Seattle....and I am so excited to be vacationing in 14 days...ooolala...Hats, scarves, boots...now that is reason to stay covered...the texture, the colors the warmth and not to hide...

Cheers to a feel good day..Happy Hump Day...Wednesday....I care about you too...hugs.

Love,
Oluwa

Oluwa · Posted: Fri Oct 10, 2008 6:11 am Post subject:

Saysusie for your Lauri..Happy Birthday Lauri...

For you Saysusie..head hugs full of love...

Celebrate this day, her day...

Love you,
Oluwa

Saysusie · Posted: Fri Oct 10, 2008 6:39 am Post subject:

Sweet, Sweet Oluwa;
I cried when I read your posts because I think you are soooooooo right and the realization hit me like a rock. Each year, I go through this. I think that it starts as soon as September and/or October approaches. Cognitively, I am not able to put two and two together until some caring, perceptive person (like you) draws it to my attention. I keep thinking that I will get through these months better, but it never fails; every single year...I get sick, go into a flare, and fall into a depression....it's like clockwork. Even when I don't realize what I am doing to myself, I still end up here!
Previously, once I've come to the realization, I know that I will not be fully functional until the year has ended (the Holidays are just not easy at all)!
Thank you so much for your birthday wish for Lauri. She would have been 33 yrs old today. I try to imagine how she would look at age 33...but I can only see her at age 24 or younger. Oluwa, I miss her sooooooo much and it just does not get any easier.

I had to chuckle at your process regarding the biopsy Smile

I am glad that you made the appointment. Please let me know what they decide to do and I hope they come up with something that will speed this healing along.

I have written to my doctor and asked her about the Lunesta. So far, she has been very cooperative with me once she realized, as she said, that I was an intelligent person who understood my disease! I won't tell you how long it took her to come to that realization...that's another story for another day (lol).

We live in the High Desert, one of the few places in California that actually has seasons. So, yes, I do get to see the leaves on the trees change and I do get to witness the beauty of each season. The problem is that, with constant growth up here, the seasons are getting shorter and shorter. I swear, it felt as if this year went from winter straight into summer and that we are going from summer straight into winter. That is not fun at all.
We are surrounded by the San Bernardino mountains and I can see them from my front door, back door, upstairs windows etc. I can see the snow on the tallest mountains like little white night caps on snuggling bears. When our mountains catch on fire (as they do every year), it reminds me of an old man lying down smoking a pipe. I need only drive South East for about 20 minutes and I am on my way up to the mountains. That is such a beautiful drive and I love to do it several times during the summer (as Victorville is always in triple digits in the summer) to cool off and be "somewhere that's green" (from Little Shop Of Horrors).
I'm sorry that you no longer enjoy the beautiful sights and sounds of nature as you once did. I can truly understand your urgent need to move somewhere that is good for your soul. That is so important and can have a much more significant affect on our health than we realize. I hope that your vacation does for you what mine did for me! Fourteen days sounds wonderful!!!
Have a wonderful weekend! I always put a birthday greeting in the newspaper for Lauri, so I am running out now to purchase the paper.
Thank you for being so sweet, so understanding, and so comforting...especially at times like this when I truly need it!

Always
Saysusie
_________________
Look For The Good and Praise It!

mnjodette · Posted: Sun Oct 12, 2008 4:30 am Post subject:

God bless you, Saysusie, as you pass through this tough time of the year. You honor your daughter in the most special way - with this incredible forum; with your music. She must be smiling and nodding, so proud of you and feeling so loved. Thank you for sharing her with us. Hugs...prayers...good thoughts....all coming your way.

Jody
_________________
"Always laugh when you can. It is cheap medicine." Lord Byron

rob · Bear Joined: 12 Feb 2008 Posts: 681 Location: Maine

Hi Saysusie,

I'm sorry that there are so many things causing you such pain both physically, and emotionally. I can't imagine how difficult Lauri's birthday is for you. And the holidays are never the same after you've lost a loved one, especially when that loved one is so young, with so many wonderful things ahead of them. It's an emptiness that can never be filled. I think alot about very close friend of mine who left us far too early, and I wonder what he would look like now too. I try to imagine it, but he'll always be 26 years old in my mind.

Lauri would be so proud of you, and all the good you have done for so many people in honor of her. Despite all the sadness, all the good that Lauri has inspired will alway be something you can smile about and look back upon with pride. And nobody, or nothing can ever take that away.

Rob

Oluwa · Posted: Sun Oct 12, 2008 12:09 pm Post subject:

Hi you Dear Saysusie...

I do remember your blues last year at this time. I wish I could say something to make it easier for you. I tried to find ways for me with my Momma. I get the big aching sigh. Head hugs...

I was just saying to my husband yesterday...oh, my Momma eats that (ice cream sundaes with Spanish nuts)..then realize I say a lot. Daily he says. My Momma, my Momma did this, my Momma did that...she use, she did, my Momma taught me this, she said this...and I never say it often about my Dad, sisters or brothers. I think we do it..to keep them alive...a way for them, my husband to met them, my Momma, know them like we do.

Lunesta...I was mentioning on another thread. I feel like my body slept, but you don't wake with that wow, oh, I feel so wonderful oh, this bed feels so great, I want to stay under the covers for another hours. It is like drinking water it quenches your thirst, but a Lemonade..or Champagne...wow.

Lunesta is like water. You sleep, get up. And because you sleep, wake without the lug..it makes it a great day. I do feel less pain...well, especially since I am starting to dose with 60mg of scaroids. But know I notice a quantum improvement before the Prednisone...

Finally was prescribed prednisone for my rash...it is stopping it in its scabby tracks. Elated!

Your home, location sounds beautiful...mountains..they call my name. It is a wonderful feeling when you can fill your eyes with snow tops.

Happy Sunday...
Hugs,
Love,
Oluwa

Saysusie · Posted: Tue Oct 14, 2008 5:14 am Post subject:

Mnjodette;
Thank you so much for your sweet words & kind wishes. I often feel, in my heart, that she is happy with me. I do believe that I am not nearly as blue as last year, or the year before that, or the year before that. It's just that it catches me off guard each year because I think that I am going to be fine, and I'm not quite there yet. Being here, with all of you, is a big help to me and I think that it is a large part of what keeps me sane during these times. So, I have to say "Thank You" to all of you Laughing

Rob;
I remember you sharing about your friend and I know how such a loss can leave an emptiness that can never be filled. Fortunately, I begin to dream of her often during these months and that truly, truly helps. It's almost as if she knows that I need her, so she comes to me in my dreams; sometimes at age 24, sometimes at age 6, sometimes at age 19, etc. I wake up feeling so much more calm on those nights when I dream about her. Do you often dream about your friend? I truly hope that you do.
Thank you, Rob.....for ALL that you do!

Sweet Oluwa;
Like you, I spend a lot of time saying, "Lauri once did this", or "Lauri loved this show", or "Lauri and I always did this or that.." I think that you are absolutely correct, it is our way of keeping our loved-one alive.
I went through years of therapy after we lost Lauri and one of the things that my therapist drilled into me is that; Yes, I should talk about her as often as I want and whenever I needed to. If there is anyone who does not want to hear me talk about her or who thinks that there is something wrong with the fact that I continue to talk about her, then I need to drop-kick that person from my life because THEY are the ones with the problem....not me. So, I say to you.......keep talking about what your Mother did, what your Mother liked, what made your Mother happy, etc. Keep talking about your memories of her. Don't be put off by anyone who does not want to hear what you are saying. Keep saying it, even if you are only saying it yourself...just don't let anyone or anything make you stop speaking your Mother's name! The bond between mother and daughter is a unique one that is so blessed. It is not the same as the bond between siblings or other familial connections. Your mother is in your heart. For you, that is where she lives. Since she is always in your heart, she is always in your thoughts - since she is always in your thoughts, she will always pass through your lips in the sweetest, memorable words. That is a tribute to her and a comfort for you. Don't stop.

Thank You All.....
Saysusie
_________________
Look For The Good and Praise It!

Oluwa · Posted: Thu Oct 16, 2008 6:56 am Post subject:

Hi you, Saysusie...

Just checking in....

Counting the days till..here I come UP. Flannel jackets, Alpaca hat all packed. Counting today, 7 days hitting I-26....

I need a vacation with family, faces, conversations from the sickly leisure woe is me life with IT. And I am making sure IT stays home...and if It decides to find its way into my baggage I'll snuff him out with a red eye beers and grilled brats.

Today, it is going to be a great day....I will make it that way.

Hey, hey..hey Happy Day...Hugs.
Love,
OLuwa

NoodleMom · Labrador Joined: 09 Nov 2007 Posts: 305

Saysusie, I am sorry about your daughter, Lauri. Imnot sure if I remembered about her from last year. Not sure if I was even here last year. Come to think of it I wasnt. I didnt join til Nov.

My daughter would have turned 14 on October 4th. She has been gone 9 years now. The lastb irthday I got to throw her was her fourth birthday.
This time of year is always so hard and I like you dont feel any less pain until after the holidays. They are so hard.

Praying for peace and comfort for you and for me and grace to get thru the next couple of months.

Happy Birthday Lauri and Hayley!! These Mamas are missing you.

Hugs, Kasey

Saysusie · Posted: Thu Oct 16, 2008 6:38 pm Post subject:

Noodlemom;
I am praying that you, also, find some peaceful moments where Hayley's memories bring you some comfort. Come January or February, we will check on each other to see how we are doing after the holidays.

Sweet Oluwa;
I am looking forward to your vacation almost as much as you are Laughing

You deserve it so much and I know that you will enjoy the warm fires, bundled up clothing, and clean-fresh air!
16 days & counting

Peace and Blessings
Saysusie
_________________
Look For The Good and Praise It!

Oluwa · Posted: Sun Oct 19, 2008 8:41 am Post subject:

Hi Saysusie...

How's the day in Victorville...Summerville, Sunday, the air is crisp, the yard is full of tired worn out leaves. Here they don't change colors they just wear out and fall....

Hey did you get your prescription Lunesta...if so, isn't the after taste, in the morning awful. Makes water taste like wet pennies to me. I have licked Lincoln's head and tried dirt when I was a kid.

Rash is long gone....tapering down on the Prednisone. Five more days, but my malar is getting a deep red..wonder why?

Biking for two, yet? I haven't took mine for a spin as much as I had planned or as far.

Have the results from you MRI of your thigh come in yet? Praying all is well...mmm-m---m..good vibes and that your all over feeling is better than your norm. Say NO to inflammation!

We are leaving on the 22 and be back on the 3rd. I did absentee ballot just in case I was too worn to stand in line the next day.

Shocked

Driving round trip for four days, I must be crazy. All for the animals...silly me, silly love?

Happy Sunday....enjoy each moment...
Hea dhugs,
Love,
Oluwa

Oluwa · Posted: Tue Oct 21, 2008 1:40 pm Post subject:

Hey you..Dear Saysusie...wondering how you are..thinking of you. Missing you. Emailed you too...

Tomorrow I'm off for my big adventure..UP....returning on the 3rd. See you when I get back...

Keep well...be well, Saysusie

Toodles..Love you.
Hugs,
Oluwa

Saysusie · Posted: Tue Oct 21, 2008 8:51 pm Post subject:

Sweet Oluwa;
I hope you read this before your trip. If not, I know that you've come home rested and peaceful. I am so wishing that you truly, truly enjoy your trip and that it fulfills you emotionally, spiritually, and physically.

Kaiser does not prescribe Lunesta, so my rheumy gave me Ambien. Tonight will be my first night trying it. I'll let you know how it goes.

The MRI showed fatty cells only (Thank Goodness). It has shrunk 1/2 cm, which is good news. We will do another ultrasound in 3 months, just to keep an eye on it.

Today (10/21) is my birthday (Lauri & I would always celebrate our birthdays together) and I actually had a good day. I had the sweetest dream about Lauri last night. When that happens, my days are always hopeful Laughing

It helps, also, when all of my loved-ones call me and sing to me or tell me that they love me etc. So, this birthday was a good one (it was a long time coming)

Took the tandem out yesterday.....needs a lot of work (flat tire, broken brake line, etc.). We took it to the shop to get the repairs done. In the meantime, hubby and I are taking nice walks in the evening after dinner. Just as enjoyable as a tandem ride, for now.

I got your e-mail and it was so inspiring that I printed it up to re-read. Especially when you spoke about missing your Mom. So, a reply is forthcoming Rolling Eyes

I was surprised to learn that I had lost 15 pounds Crying or Very sad

I have no idea why or how? My rheumy was not, in the least bit, pleased! You know with a history of ED, doctor's tend to ride you mercilessly about your weight! I know I was sick for a while, depressed for a bit, but I thought that I was eating. My hubby says, "no, you were picking and leaving 90% of your food on the plate, claiming that you were full". I really thought that I was full....but that all goes back to previous ED, I'm sure. I should have known when I put on a pair of jeans that once fit nicely and they nearly fell off of my hips (lol). Anyway, I am being watched like a hawk now and have to re-gain the weight. Ugh!!!

I'm glad that you enjoy my CD. It is very eclectic because Lauri's taste in music was eclectic. A little new wave, a little jazz, a little country, a little R&B......
I am finishing up my jazz CD & will start on my Christmas CD. Once they are done, I will put them online and let everyone know how to purchase them.

Do, please, have a wonderful, wonderful vacation. Come back to us rested, happy, and content! We'll miss you while hoping for the absolute best for you!

Always
Saysusie
_________________
Look For The Good and Praise It!