DEDICATED2HIM   38,098
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My life in 7 points

Friday, September 26, 2014

I have a lot to say....since almost a whole month has gone by since I last did much of anything on Spark's site. Here's a quick summary:
1) My book is now being printed. I should receive my first box of books any day now.
2) My weight has been fluctuating back and forth over the same five pounds. However that whole "range" is five pounds lower than it was before. Which means I've lost anywhere from 5-10 pounds. But I'm frustrated because I'm so STUCK.
3) I was temporarily involved with a different support group for AI (autoimmune diseases) I got "burned" because some of the people are very much "know it all" and can be curt and kind of nasty if you say something they don't like.....So I learned my lesson and am coming back to the best AI forum on the web. The One right here at Spark (Living with RAD)
4) My liver enzymes were shooting up so the doc took me off of all my meds and put me on an oral biologic which is just for PsA....not for any of the other RADs I have. It seems not to be helping but he said I have to give it three months. So far it's been a little more than one month.
5) I have to go to a neurologist because my husband suspects I have RSD/CRPS which is a disease that is EXTREMELY painful involving numbness , furious itching, sensitivity to touch all in one area that had undergone some trauma to the nervous system. My area is my right thigh and that is pursuant to hip replacement surgery.

Of course when I read up on this disease, it is HIGHLY prevalent amongst people with RAD and inflammatory disease such as asthma (both of which I have) I'm not going to get all freaked out ....I may have something else, who knows.

6) I have not been tracking my food. I eat out way too much but I always bring home half of the meal and often skip dinner (or lunch depending on when I ate out) and I will eat the meal the next day. I am making some real progress about not eating at night. I don't know why or how but I'm not goign to look a gift horse in the mouth.

7) I feel terrible for not being present as a team leader. I promise to try to do better from here on in. You guys (ladies) are the best!!

  
  Member Comments About This Blog Post:

JANISMKW 9/27/2014 10:25PM

    Congrats on the book. How exciting!

When I started Humira it took a good 3 months to start working but has been enormously helpful, so it can take that long for meds or biologics to work.

Hey, you've avoided going into the hospital for breathing issues, right? That's a good thing. I'm on another prednisone taper now.

As always, you are in my prayers. I'm sorry you have so much pain and other nerve symptoms. Hope you find help or relief somehow. I just bought C. S. Lewis' book "The Problem of Pain" but haven't read it yet.

God bless you and keep you.

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_LINDA 9/27/2014 11:47AM

    You have to look after your own needs first. All Autoimmune disease sufferers understand this. So very sorry to hear you may have yet another nasty thing piled on top of your already overflowing plate :-(( It is best to rule out anything though. Three months before you may see some results from this medication?? Seems way too slow for a biologic to start showing results..
Maintenance is good when you are dealing with these troublesome issues. Some of us can't even maintain when the going gets tough :-/ Keep on going, you are doing great!
Congratulations on your book! Best of luck with sales for it.
{{{gentle one armed hugs}}}

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EBURGITE 9/26/2014 11:25PM

    i applaud you for continuing to push forward....keep up the great work! emoticon

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SEATTLE58 9/26/2014 7:31PM

    You are one of the very best on our RAD team and we just love you! I hope that the itchy area that you have can be remedied normally and that it's not another disease added to your list of troubles. I'm rooting for you in all areas and good job on weighing less, no matter how much it bumps around, it's bumping on the minus side so that's awesome. Mine lately is bumping on the plus side which I hope to turn around real soon! I have this bum right knee that more than likely will have to be replaced sooner than later the Ortho. says. Ugh! Hugs to you, Karen

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ROCKPORT9 9/26/2014 6:20PM

    I hope you find relief for all that is affecting you. emoticon

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In Production!

Friday, September 05, 2014

That's my manuscript...not me. My days of "production" are long gone. I got the email today that said that everything that my manuscript needed was done and now they are going about typesetting it and printing the galleys. I am REALLY curious how many pages it will end up being. The length of the book is what affects the price of the book to the public. My guess is that it will be about 300 pages. The trim size is 6x9"

But HERE IS THE REALLY GOOD NEWS!!
I AM WEARING AT THIS VERY MOMENT A PAIR OF "SKINNY JEANS" I had ordered and when I got them in the Spring of this year they were a good 6" away from getting them buttoned. I despaired. Today I put them on, at first not realizing that these were "those" jeans and I put them on and they fit perfectly....except i have to keep pulling them up because they are loose!!! Can a ten pound weight loss really make that much of a difference? I'm so happy. I had really given up on myself.

I have not done any exercise at all except for one day when I did 22 wall pushups and 25 squats. One day. My breathing has been a big issue. Today I tested my oxygen saturation in my blood with a pulse oximeter device and my SAT was 84!! 95-100 is acceptable (good) and less than 90 is considered serious. 84 could have gotten me on a ventilator if they had been unable to bring it up. I put on my BIPAP mask and hooked up the oxygen to it and took a nap. When I woke I tested it again and it was 91. Not good but it will have to do because I am NOT NOT NOT going to the hospital for steroids. Not when I just started losing weight. NO way.

I have not been really attempting to eat well. I eat healthy foods when I eat out but at home I just eat whatever I find. Often it is a frozen Amy's meal or a Marie CAllendar pot pie. I know they have sodium but they are small portions. And they taste better than anything I can cook easily. I bought some butternut squash that is all peels and cut into chunks. I don't know whether to make soup or cut up some apples and nuts and sautee it in real maple syrup. HMMMM that sounds really good actually. Maybe I will make that. Tomorrow. Today I am too tired and feeling weak - probably from weight loss.

Have a good night sparkers.

  
  Member Comments About This Blog Post:

_LINDA 9/6/2014 9:40PM

    emoticon on your manuscript and your weight loss!
Losing 10 lbs without putting any effort into food or exercise is going to make those of us struggling with the old fashioned way will wonder what is your secret??
Not good news about the oxygen levels :-( I wonder if learning yoga breathing would help you. When I took my first chair yoga class this instructor went through with us step by step the relaxation breathing process. It was meant to make your whole body and mind totally relaxed by the end of it. This instructor was just subbing though and the regular one just said practice your ashstanya (SP?) breathing without directing us. Think I needed a few more instructions to get the hang of it. Its actually remarkable what yoga has done for people with disabilities. I have seen some videos of amazing improvements. It may not take the disability away, but improves the quality of life. It doesn't require deep or forceful breaths at all.
Hope you feel better.
{{{gentle hugs}}}
Linda

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JANISMKW 9/5/2014 10:30PM

    emoticon emoticon emoticon on your manuscript and your skinny jeans!!! I know you had been losing llbs.

I know I feel bad if my O2 is like 97, so no wonder you don't feel peppy.

I've been sick with asthma and bronchitis, as you know, so I'm all about easy food lately. Today for lunch I had 2 100-calorie Greek yogurts and put some raspberries on them in the containers. Some days it's cottage cheese and some vegetable. I like Egg Beater omelettes... just pour in the pan, add vegs and cheese, voila.

God bless, hope you keep feeling better.

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SEATTLE58 9/5/2014 6:50PM

    emoticon on your manuscript and your weight loss! emoticon It will be so fun to try to find your book one day! I'm so happy for you! emoticon

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SENIMMO 9/5/2014 5:36PM

    emoticon emoticon emoticon

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EMMACORY 9/5/2014 5:17PM

    emoticon on your manuscript! What is the story about? Blessings on your journey! emoticon

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short note....

Thursday, September 04, 2014

Today I have been busy readying my manuscript to send via email to the publisher. Ran into a snag and have to wait for a phone call from them. Paid some bills and now am signing onto Spark for the first time in a while.

I cannot decide if the new medicine is working for me or not. My hands look a little less swollen and I do not jump and scream if someone touches them....however if I BUMP them all bets are off. My feet have been very painful as has my neck. Pain is still waking me up at night. I have not had any notable side effects from the medicine which is good, although I would like a round of that weight loss one!

I can't believe that Fall is around the corner.
Where I live it can snow in October. i hope it doesn't. We will have snow plowing bills before long. Sorry, didn't mean to depress anyone. We have to somehow get a roof on our garage before the snow comes.
I've got to lie down, I will write again later.

  
  Member Comments About This Blog Post:

JUDITH316 9/5/2014 7:07AM

    emoticon for dropping in, it's great seeing you here and blogging, I'm happy your hands are improving and less painful and swollen, my prayers continue for you that all pain will subside in your feet and neck and the meds will work for you...I'm so excited for you that you are getting your manuscript ready for the publisher...I wish you God's Best... emoticon

Comment edited on: 9/5/2014 7:11:38 AM

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JANISMKW 9/4/2014 10:53PM

    You're in my prayers daily. emoticon emoticon emoticon
Maybe the medicine is starting to work... sometimes they can take months to get going. And no side effects is good news... you are tolerating it.

Since I was off my RA med for several weeks I have been wearing my IMAK gloves at night and find they really help. Otherwise any gloves overnight seemed to help prevent some of the stiffness, especially when it's cold.

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_LINDA 9/4/2014 3:46PM

    So great to hear from you. Pain and being unable to sleep are my constant companions as is near freezing morning temperatures. Can hardly move my hands sometimes they are so stiff with the cold. We so live in the wrong places!!
Wonderful to hear you can at least write! Something to take your mind off things! For me its exercise. Cramming as much in as possible before my surgery on the 29th, knowing I face another long layoff :-( And then I know my right hip needs taking care of. I am sure that is what causes all my back pain. Its toast. Staying on the surgery treadmill.
Keep in touch where you are able.
{{{gentle hugs}}}
Linda

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SEATTLE58 9/4/2014 12:57PM

    Oh Cyn, I think of you all the time and wonder how you are and now I hear from you here, so that's good. You're still kicking, as they say! emoticon Me too! I feel like you with not being sure if the medicine is working or not. I feel that my hands are better, but my feet and ankles are so painful. I just went out for a long 10 min. of a very slow walk and with throwing my body somewhat into it because of the pain, I did it. I feel that we could count our min. alot longer than the norm, because of our pain, don't you. Yesterday I put 30 min. down when I did a long 10 min. walk. I hurt so bad and yet did it. My knees don't feel like they want to hold me either. I know that you know all about this. How are your shoulders? We can get snow in October too where we are. I remember the kids getting all dolled up for Halloween and it's like, "Where are you?!!" when they got ready for trick or treating!! You could tell by their mask or painted face hopefully who they were! Oh, for the memories!! I hope that you have good days ahead. You deserve them! Love, Karen

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BYEPOUNDS 9/4/2014 12:28PM

    emoticon

Somewhere it is snowing today. Let's build a snowman.

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Juggling Treatments

Tuesday, August 19, 2014

I weighed myself this moring...in my PJs and with a full bladder....and I weghed 223 which his down from 230 very recently. Then before I got into my shower I thought "What the heck" and stepped on the scale. 221! This is the lowest I've been all summer ....and of course my asthma is acting up and I'm afraid I'm heading for the hospital. But I'm not goign without a struggle. I do NOT want to gain all that steroid weight now...just as I was getting in the groove! So I did my nebulizer, my puffers, and then sat with O2 on most of the day. If I can get this body to fight the asthma
and avoid the hospital I will be so happy. I must be very careful with activity. I cannot exercise because I can't even walk across the living room without getting winded.

Tomorrow I start a new RA med. It's a very scary one. It causes depression and can cause suicidal thoughts. Headache and nausea and vomiting and some people have lost 20% of their body weight. The drug company calls for reports on how I'm doing every day. I think this is a new drug and they are only letting a small sampling of people to try it. I know --frightening thought. But maybe a good thing. If it helps me lose weight that's great. If it doesn't mess with my liver then that is great too. If it reduces my swelling in my hands and the pain there then again, a plus. If I start to get depressed or to feel suicidal I will try to tough it out. I willl remind myself that its merely a side effect and not a real feeling or thought. If it just gets too much to handle, then I will go off the med. And at that point i will be without options. Every other biologic and DMARD cause liver problems.


Today I almost went to the pulmonologist because my breathing was so bad. BUT you know what? They will have ot take me out of here feet first if I have to go off the med because I needed steorids. And then I would gain all the weight lost and then some. NO. NO. and NO!!!!!

  
  Member Comments About This Blog Post:

PGHP31CK 8/21/2014 10:29AM

    Please, please promise us that, once you're on the new meds, that you'll post if you have ANY ANY inkling of a thought of harming yourself!!!

Praying that all will be well.

HUGS

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_LINDA 8/20/2014 11:58AM

    emoticon
That asthma is just so terrifying :-( Wonder what is triggering it? Hope you can stay out of the hospital!!
The new medicine sounds promising if it can help you -its great you were selected. Praying that this is the breakthrough that will finally help relieve some of your suffering..
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emoticon emoticon emoticon emoticon

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JUDITH316 8/20/2014 4:32AM

    My prayers are with you my friend, emoticon on your weight loss accomplishments, you are doing emoticon and I am standing with you for this whole situation to turn around and you will get through this... emoticon

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JANISMKW 8/19/2014 8:01PM

    emoticon You've been losing lbs consistently and steadily. You're doing a lot right!

Hope the new RA med works well for you and the side effects are not too bad. Toughing out nausea and vomiting might be okay if you can avoid dehydration. I'm concerned about the idea of trying to handle suicidal thoughts on your own, though. Not something to fool around with... stay safe.
emoticon emoticon

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SEATTLE58 8/19/2014 7:46PM

    emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon

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DUSTYPRAIRIE 8/19/2014 5:25PM

    Praying for you. I understand more than you may know.

(((gentle hugs)))

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CHANGING-TURTLE 8/19/2014 5:16PM

    emoticon

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Teeth and Poor Choices

Saturday, August 02, 2014

Yesterday was notable for several reasons. 1) I emailed my manuscript in to the editors at my publishing house and now will be waiting for their report.
And 2) I went to NY for some blood work and also a visit to the dentist. I have Sjogrens Disease which messes with your body's ability to produce fluids....Saliva, tears, you get the picture. The lack of saliva rots your teeth. Six months ago I had no cavities. Then came my diagnosis and the now, I found I had four cavities. So yesterday he filled the four. I have to brush my teeth every time I eat and also must floss. I had bought a water pik with the sonic toothbrush and found out that the water irrigation feature can destroy your gums if you aren't careful. PLUS you still have to floss even with that. grrrr. My big problem I KNOW is that I snack in the middle of the night. I have to stop that or I won't have any teeth left.

Yesterday after the dentist ...my dad and I went to Friendly's to eat dinner. I won't tell you what I had because I'm too ashamed. And the bad part was that I didn't even enjoy it. Lately when ever I go to a restaurant and I decide what I want to eat and the waitress comes ...and I panic. I forget what I wanted and I look at the menu and order the first thing that comes to my eyes. I've had some really bad meals that way. I don't know what my problem is. I need to have the guts to tell the waitress I'm not ready. This waitress was really pushing us last night. She came by three times in ten minutes to ask if we were ready to order....and I really wasn't.

Then to put the cap on a busy day...we got stuck in traffic on the highway going home due to road construction ...so we got off the high way to take the backroads...us and everyone else. It took us two hours instead of one hour to get home. That was a really long day.

And for the past week Spark People has not even been on my radar.
I'm sorry to all of you who depend on me....members of the RAD team etc. I will try to get back on the ball this week.

Have a good weekend all of you.

  
  Member Comments About This Blog Post:

_LINDA 8/20/2014 1:01PM

    Sorry to hear about your teeth woes and the new diagnosis :-(( You might want to converse with MEXGAL1 as she has a lot of experience with that disease..it also wreaks havoc with the GI tract where she has had a lot of trouble :-( I have very sensitive gums and a water pik is like torture to me, couldn't stand getting that done :-((
About the restaurant thing -if there is any way to see the menu beforehand (whether online or just familiarity) you need to pre select what you will have before you get there, and only check the menu to see if they have it then close it right away and then just order it. Remember you have the right to order healthy substitutions rather than what they offer on an entree -grilled instead of fried, baked potato instead of mashed, brown rice instead of white, etc.
All the best with it!
emoticon emoticon emoticon


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JUDITH316 8/16/2014 2:48AM

    emoticon emoticon emoticon on your Manuscript being accepted, I'm so thrilled for you, Cheering you on my friend...

Sounds like quite the day with everything else that filled up your day...

God's Blessings my friend, keep me posted on your Manuscript...This is so exciting!

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JANISMKW 8/2/2014 9:24PM

    Dear Cyn, it does no good to beat yourself up, really. Sorry you had such a long, rough day with traffic, dentistry, pushy waitress and all. You must be exhausted.

Learning things like how to order healthy things in restaurants and that you don't feel good after eating heavy food are knowledge you'll have for life... it's one day, one meal, one snack at a time, isn't it?

About oral care, I heard on Dr. Oz that brushing right after meals can erode tooth enamel.... they said you should wait 30 minutes after eating for the enamel to re-harden. Good luck with the night snacks, I know it's a a battle you're fighting.

Congrats again on having your manuscript accepted by a publisher! So great!

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LUNADRAGON 8/2/2014 12:38PM

    I got the SparkPeople app on my phone and it has helped me remember to log in, even if I haven't read or written blogs every day, I have logged in this way for 63 days, so I am grateful.
Hey, so cool about your book.
Deborah

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SEATTLE58 8/2/2014 11:13AM

    My bil also has Sjogren's, so I kind've know that it's not all fun and games. I'm really feeling for you and hope that your days can go better. Don't worry about not being around with SP. We understand that one can't be here every moment of the day! I know what you mean about making bad choices too. I do that too, way too often. I get tired of salads all the time! And some of them aren't very healthy either. We'll just keep taking one day at a time and do our best at the time. You can get more guts with the waitresses. I know you can! They should be very used to people taking their time. That's what people do when they eat out because it's special. Sometimes we know what we're craving too, and can work it in. Love and hugs to you Sweets, Karen

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