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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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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.
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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!
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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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Ten Minutes

Monday, July 28, 2014

Yesterday I got up my nerve and went to church. I showered the night before so I could rest until 10:00, the time when Ralph would pick me up to go to church. The new recliner was lovely. Silent (unlike the groaning one I have at home) and comfortable ...What a lovely gift!

Well I made it through church (only fell asleep once!)

This morning I'm over heated....just put the AC on so that should improve. I signed up for the ten minute challenge team run by Spark Guy. Ten minutes. Surely I can do that. Today I'm going to do the exercises in bed. My neck is really hurting today, cracking constantly. I wonder if there are any "bed exercise" videos here on Spark. They have chair ones....what about bed ones. I know I can try to do bridging. And straight leg raises. And bicycle crunches. Pelvic tilts Ankle pumps.
Any other ideas?.... I can use the resistance bands --hold the handles in my hands and wrap the other end around my foot and push my foot out using the band to resist. And with the smaller resistance band I can put my hands on the ends and spread my arms wide against the pressure of the band. That will be good for my artificial shoulder. I have been negligent in exercising that shoulder.

I will do these when I finish this blog. promise.

Today my daughter has promised to clean out the screened porch for me. I look forward to having it usable. It would be nice to go out there and sit in the evenings. I could have tea out there with one of my friends in the afternoons if it's not too hot.

I've been losing and regaining the same five pounds over and over. It's getting so frustrating repeatedly hitting the same wall. I know what to do to lose it....The Eat to Live program works like a charm. But my husband doesn't like that food and while I liike it....I don't have the stamina to carry out those recipes. They are time consuming and use hard-to-get ingredients. And I love cheese. It's so hard to give that up...that is the only dairy I eat.

And a piece of good news. I have a friend, an elderly lady, who has been reading my other blog and has been impressed by my writing skills. She heard that I have a manuscript that I'm trying to get published....and she has volunteered $1,700 toward the price of having it self published. Now I'm in the process of looking for a reputable company to publish my book. There are a LOT of these self-publishing companies out there but if you go to their website you hear a lot of complaints by "authors"....and it strikes me as odd that these authors cannot even manage to write a coherent, grammatically correct sentence in order to voice their complaints. Is that the type of person who self publishes? Yikes.

well, my room has cooled down. Time to try to get my ten minutes in.

Be blessed today.


  
  Member Comments About This Blog Post:

_LINDA 7/28/2014 11:51PM

    So glad you could attend church and even be reasonably comfortable in the new chair so much so you could even sleep!
The chair exercise team is a great one -the leader works really hard to motivate people and provides links for all kinds of exercises based on ability and yes, there were links for people in bed although the one I looked at was upper body -I assume they think you can't use your legs if you are bedridden, but who knows what else might be on there -you could always search You tube for exercise videos done in bed..
That is one special lady friend!
Keep on trying!
{{{gentle hugs}}}
Linda

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JANISMKW 7/28/2014 8:42PM

    Keep it going, Cyn! You inspired me to join the 10-min team too.

Can you get a PT to come to your home from a visiting nurse assoc.? All you need is a Dr's Rx for it. I've had it post-op and my mom does periodically for her neck. They could give you a program to follow in bed, sitting, whatever, and progress it as you can. The Dr. should know reasons to justify it... retaining mobility, balance, specific joint issues, etc. Plus they can do some other treatments like massage and ultrasound.

I looked at SP videos and there are like 7 chair ones... I thought there were more, but there are other things like arm strength training in videos that can be done sitting, even if the video shows them standing. Take breaks as needed.
emoticon and emoticon

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JUDITH316 7/28/2014 3:37PM

    emoticon job, keep up the great work, I'm so glad you were able to attend Church yesterday...Blessings on your week... emoticon

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SEATTLE58 7/28/2014 10:42AM

    I hope that you were able to get some sort of 10 min. in, Cyn. That can really make one feel lots better. I know what you mean about the alot of people these days that don't know how to write and spell. It's really pathetic! Maybe talk to other good people locally and they can tell you of a reputable author. Good luck!
emoticon Karen

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LVZ617 7/28/2014 10:11AM

    I am impressed and motivated by you! I got to your page through the SparkGuy's 10 minute team which I just found today.
I feel if you are willing to do 10 minutes in bed, I can squeeze in 10 minutes in a chair. I had been dong better with my weight, losing 30 pounds, and then those darn IV steroids for asthma a year ago... I haven't lost any of the weight I gained, and went through a period of what's the use, I'll never lose, so I might just as well eat what I want.
It also helps to be reminded to use spiritual grounding.
THANK YOU!

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YMWONG22 7/28/2014 9:08AM

  emoticon emoticon emoticon emoticon

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Sick Puppys and Church Attendance

Friday, July 25, 2014

Well my three friends visited last week....and I promised them I would do my best to attend church on Sunday. Then pastor visited and said they'd installed a new electric recliner for me to use in church instead of the one there which every child under 15 had thought was a trampoline....it was one jump away from falling on the floor the next time I was to sit in it.

Then the next day my trusty friend Ralph came over to pick me and my rollator up to go out for lunch and to do some errands. Lunch went well. however in the car on the way to town (the temp was in the 90's and Ralph's car has no AC) I started to feel REALLY sick. Nauseous. dizzy. weak and exhausted. I couldn't keep my eyes open. I did manage to get through the bank visit (it was a drive up) and still had two more errands but I told Ralph I was done in. " No more...take me home NOW!!"

I got home and with the help of Nanette (my rollator's new name) I made it to my bed and zonked out for two hours. That was scary and something I do not wish to repeat. So now, Sunday looms. what about it? Will I make it? I have my promise on one hand and the recliner also beckons. But what if I get sick? Ralph sits on the opposite side of the church. I can set up a secret method of reaching his attention. I will tell him if he sees me stand up.....wait until I get to the back of the room and if I wave....then come and rescue me. I'll tell you--I do not wish that on anyone and its not something i want to encounter again.'

My guess is that the heat, combined with the fatigue common to my autoimmune diseases ..combined to make me one sick puppy.

  
  Member Comments About This Blog Post:

JANISMKW 7/25/2014 10:13PM

    I'm sorry, too, that that happened to you. Of course, "once bitten, twice shy" and anyone would want to avoid having that happen again, which is smart. But don't give up, make adjustments.

Linda has good points about hydrating and watching sodium. You can keep water with you in church to sip.

It's great that Ralph is willing to be a friend and help you, but is there any transportation with AC when it's that hot? I'm sure Ralph will understand. Maybe use your rescue inhaler before heading out and exerting yourself? And moderation... maybe don't try to tackle too long an itinerary in one trip.

It is great that you have such a wonderful church community and pastor. And a recliner, how great! I've never seen such a nice accommodation.

God bless you and keep you.

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_LINDA 7/25/2014 8:34PM

    That kind of heat would have made me sick too, unreal, picked a bad day to run errands for sure. Having a heavy restaurant meal wouldn't help either. If it was salty (and they usually are) you could have been dehydrated.
I am assuming you are worried you will get sick in the church because it has no air conditioning either? That is wonderful they would buy a special recliner just for you. You have a very caring church community.. Maybe if you made sure you were well hydrated (or take a water bottle with you) and some anti nausea medicine you would be okay. Your faith is what will keep you going when nothing else will..
Praying for a good day for you to go..
{{{gentle hugs}}}
Linda

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SEATTLE58 7/25/2014 4:58PM

    Oh honey, I'm so sorry that you got so sick. It sure could've been a combination of heat, stuck in a car without a/c and running around too here and there. I hope that that good rest helped to feel better and better. Loving you Cyn, Karen emoticon emoticon

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Sick Puppys and Church Attendance

Friday, July 25, 2014

Well my three friends visited last week....and I promised them I would do my best to attend church on Sunday. Then pastor visited and said they'd installed a new electric recliner for me to use in church instead of the one there which every child under 15 had thought was a trampoline....it was one jump away from falling on the floor the next time I was to sit in it.

Then the next day my trusty friend Ralph came over to pick me and my rollator up to go out for lunch and to do some errands. Lunch went well. however in the car on the way to town (the temp was in the 90's and Ralph's car has no AC) I started to feel REALLY sick. Nauseous. dizzy. weak and exhausted. I couldn't keep my eyes open. I did manage to get through the bank visit (it was a drive up) and still had two more errands but I told Ralph I was done in. " No more...take me home NOW!!"

I got home and with the help of Nanette (my rollator's new name) I made it to my bed and zonked out for two hours. That was scary and something I do not wish to repeat. So now, Sunday looms. what about it? Will I make it? I have my promise on one hand and the recliner also beckons. But what if I get sick? Ralph sits on the opposite side of the church. I can set up a secret method of reaching his attention. I will tell him if he sees me stand up.....wait until I get to the back of the room and if I wave....then come and rescue me. I'll tell you--I do not wish that on anyone and its not something i want to encounter again.'

My guess is that the heat, combined with the fatigue common to my autoimmune diseases ..combined to make me one sick puppy.

  


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