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Let's give a hand for....

Friday, October 17, 2014

after two of the worst days in recent history, I looked at my hand that was throbbing....I'd rubbed some pain cream on it and then LOOK AT THIS!!

Time to start taking those steroids that the doctor ordered, ya think?

  Member Comments About This Blog Post:

DUSTYPRAIRIE 10/18/2014 9:53AM

    ouch. the toes on one of my feet look like that. this aging process has it's greats and woes.

(((gentle hugs)))

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_LINDA 10/17/2014 11:56PM

    Sorry you are struggling :-(( Yes, take whatever works.
What pain cream do you use? I take two forms of Pennsaid. Found it works incredible sometimes. One formulation is 8 times stronger than the commercially available Volteran. I once had incredibly sharp pain in my fingers and a lady at the bridge club put these drops on and the relief was instant -could not imagine anything working like it. The ointment is also very potent, but takes longer to soak in. They were prescription only special formulations. They did cost like $80 each I think. They really helped take the edge off some of my pain so I was able to exercise more freely.
Feel better soon
{{{gentle hugs}}}

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JANISMKW 10/17/2014 9:53PM

    Hope the steroids help you and you get relief soon.
emoticon emoticon emoticon

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SEATTLE58 10/17/2014 6:50PM

    Yes Sweetie, you better start getting them in you asap! emoticon

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KIMMYWIZZIE1 10/17/2014 6:48PM


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ROCKPORT9 10/17/2014 5:52PM


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Self Pity?

Tuesday, October 14, 2014

The following is a paragraph from John MacArthur's study Bible. I found it to be captivating and pertinent to the questions I'm asking today.

“The basic theme of Psalms is living real life in the real world where two dimensions operate simultaneously; 1) a horizontal or temporal reality. 2) a vertical or transcendent reality .Without denying the pain of the earthly dimension, the people of God are to live joyfully and dependently on the person and promises standing behind the heavenly/eternal dimension. All cycles of human trouble and triumphs provide occasions for expressing human complaints, confidence, prayers or praise to Israel’s Sovereign Lord.”

I was wondering : Am I self pitying? Do I have REASON or excuse to pity myself? This seems to say that I can be real before God about my pain but leave it with God and go on to live in joy and gratitude before the rest of the world.

  Member Comments About This Blog Post:

_LINDA 10/14/2014 11:52PM

    I always hear to leave your troubles in God's hands and live your life to the fullest you can. He helps those who help themselves etc., Celebrate in the joy and Glory of the Lord. But He should understand the flesh is weak. To feel sorry for yourself is not saying you have lost faith. It is simply acknowledging your reality. You really can't say your life is filled with joy and happiness every minute of the day. Filling yourself with the joy and glory of the Lord does not take the pain away. We are only mere humans. There won't be one person on here who hasn't thrown a pity party for themselves at one time or another. There is no shame in it. Its just showing you need more help at this critical time in your life.
Know there will always be your friends praying for you and thinking of you and wishing there was a way they could ease your suffering.
{{{gentle hugs}}}

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JANISMKW 10/14/2014 9:16PM

    I'll tell you, the severe pain of RA before I got treatment for it, raised a lot of existential questions... how can one face life and cope with such severe pain taking over one's brain night and day?

• I believe faith can help and provide some inner resources of strength.
• Christians have Jesus who knows pain and suffering as well as anyone.
• I believe what I've read and I practice about gratitude being one of, if not the, best ways to increase happiness.
• When I find myself in self-pity, it is not a positive thing and I find it best to knock it off, for my own sake.
• Even if I have bad problems, there is always someone worse off.
• There is a saying, something like, "Pain is inevitable but suffering is optional."
God bless you, Cynthia. emoticon

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A Word from my "Other" blog

Tuesday, October 14, 2014

As I have mentioned in the past has been a big part of my life in my attempts to lose weight and regain strength. IN the past several months it has been all I can do to drop in on the RAD team (Rheumatoid Autoimmune Disease) where I am one of the leaders...and just update them on my current status and trying to encourage those there who are struggling. It used to be a really active team with posts appearing every hour at least. Lately's been dead. AS dead as my own attempts at a healthy lifestyle....And yesterday one of the members of that team wrote me an honest letter - the "tough love" approach. She said that I am feeling self pity and that if I don' t get my act together I will die. And to that statement I said something like "That would be okay with me:"

Unfortunately that statement was looked upon as though it were a suicidal threat. Which it was not. Not in any way shape or form. AFter my last suicide attempt (you will have to read it in my book....I'm not going to explain it here.) I learned that my life belongs to the Lord....he holds the calendar for my life and until he beckons me....I'm stuck here. I look forward to heaven more than anyone I know does. I cannot wait to see my beloved Lord and get into that new body. I'm READY. But I am not going to try to take my life out of God's hands. I am His.

But the issue of self pity stuck to me....I do not feel like I am pitying myself. I do what I have to do everyday with the little bit of strength I have. I am in pain. I have accepted the fact that for as long as I live, I will have daily pain....and sometimes that pain is excruciating. It's a fact. It is what it is.

I have asthma which sends me into bronchospasm merely by walking across the living room.,,,I cannot exercise. My pulmonologist told me if I exercise, I will die. I'm not making that up. it's a fact. But I can do some stretches which I did today following a Richard Simmons ancient VCR tape. So I will try to do things like that. Lifting arm weights although with two messed up elbows and two painful shoulders...that will not be easy But I promised I would try it. So that's on for tomorrow.

I do not want to be thought of as someone who has given up and who pities themselves. How do I avoid that/ Do i just stop talking about pain and how lousy I feel? Just "suck it up"?In my life, I do not talk about pain unless someone specifically asks me. I do what I can and what i have to do. I don't walk around moaning and kvetching. Maybe in my writing on this team....because I look at it as a safe environment where I will not be derided or given a hard time. It's a place where we can support each other. But maybe some people think it's a place to spread cheer and positive thinking. Maybe we are just approaching the team from different directions.

Right now I'm in bad shape. Maybe from the stretches today? It's the only thing different. I will keep plugging at it.

  Member Comments About This Blog Post:

_LINDA 10/14/2014 11:26PM

    This is a team where we all suffer. Some people choose not to write one word about it, while others will. It is whatever you choose to do. What help and support you feel you need. You my friend, need lots. You are in a bad place. Releasing it here is where you will find people who at least can understand. Some would rather focus on the positives. Should be a place for all expressions.
I feel chair yoga would help you more than Tai Chi. I tried Tai Chi and found it very hard on the knees with the deep bends, not to mention the broad sweeping motions (hello shoulders!). In chair yoga the first part of the class is spent sitting there relaxing, breathing and stretching and moving every part of your body from the individual toes to your head. Its meant to put you in a relaxed state of mind, dumping out any garbage and just being. Its something I sorely needed, to get away from what my life is, the stress, the pain, the negative thoughts. Of course there were some movements I couldn't perform, and you just modify. The key is to focus on the breathing and feeling and let go. Usually the instructor leads you on a visualization to help. Any time you can find a way to escape from your body is a good thing.
Keep on expressing yourself however you need!
{{{gentle hugs}}}

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JANISMKW 10/14/2014 9:31PM

    Dear Cynthia, try your best to stay healthy and take care of yourself. Don't give up on yourself. Keep trying to find ways to eat/move/stretch/breathe that are good for you.

Here's a thought... maybe you could do tai chi. I like it a lot. It is very slow, smooth, fluid movement. E.g. tai chi walking is like walking in slow motion. It is taught at many senior centers and there are many DVDs, such as Tai Chi for Arthritis. In my class at the Y there was a woman who used a walker who would do what she could and sit down as needed. It's very good for the joints.

I love Laurel's suggestion about finding joy where you can.
God bless you.

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ROCKPORT9 10/14/2014 5:39PM

    You are trying what you can. Find joy where you can. You deserve it! emoticon

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Desperate Moves for Desperate People

Monday, October 06, 2014

Well, my box of books arrived. How exciting to see my name on the front cover and picture on the back. (of course the pic was taken a few years ago, a few pounds ago and a few (lot) of gray hairs ago....but hey it's how I'd like to be remembered.

I came up from being in the basement today and I was carrying a jar of spaghetti sauce and it felt SO HEAVY in ny hands and the weight of it make it really difficult to climb the steps. I was appalled at how weak I've gotten. I really do need to start doing some kind of strength training as well as flexibility...I'm as stiff as a joints are all but frozen in one position.

I know it's important.
I know it's gonna hurt
I know if i don't do it, it will probably hurt even worse.

I sort of don't know where to start. I need a really gentle really easy routine. AHA! I have just the ones. One is called "Stretching with the Classics by Richard Simmons (best part of it is he doesn't say a word through the whole workout. The other one is "Yogalates" I can't think of the leaders name. She has long braided hair and a beautiful voice with a soft foreign accent. This DVD works on the core and on stretching out your legs. It is soothing and gentle. Here and now I am pledging that I will do these two DVDs--maybe one a day until I get stronger and more limber

Then once I get those done so they are easy, I will work on chair yoga and chair dancing.

That is enough goal setting for now. I am hoping my daughter can join in with me but the problem would be a lack of room in the basement room...I have a bed in there and a dresser and TV/VCR/DVD and a recumbent bike. So probably will have to do it one at a time.

It would also be good to do calf raises on the step, walking up and down the steps, and wall push ups. and possibly squats. I don't want to over load myself with goals. I tend to do that....I get excited by my plans that i set too many of them and get discouraged.

And eating? I'm eating out a LOT usually one meal a day (not every day) and I usually bring half home for either later or the next day. The other thing I've been eating is frozen meals. Pot Pies etc. I know they are not the best for you but I have few options. I cannot cook anymore other than just heating something up. I cannot stand for more than five minutes. Maybe If I were to buy a bunch of veggies already pealed and cut up, maybe then I could steam them and eat them in wraps or pita or over rice. I should also add some mushrooms and beans. And what is that?? That is DR FURHMAN'S Eat to LIve Diet. HIS recipes are impossibly difficult for me right now but If I do it this just might work. I don't know if Eric will get on the boat with me but he might. I know he feels like crap and could die any day now. Maybe this will be his ticket to health. And my daughter is sick every day. She eats like crap too.

I'm goign now to make my shopping order on the computer. I think this just might work.

  Member Comments About This Blog Post:

_LINDA 10/7/2014 10:37AM

    You do need to work on one area at a time, one goal at a time. See what seems doable. In my mind just moving those joints as best as you can seems to be the critical place to start. Good old range of motion prescribed to everyone with arthritis. Nothing fancy, nothing hard, relatively speaking (painful as hell when you are in an active flare) but necessary to quality of life and being able to move. Not exercise, no. All can be done in and on the bed. The goal could be to do what you can after taking pain medications every morning or after loosening up in a hot bath or shower. Actually, hydrotherapy works best -easier to move joints in a hot tub, supported by the buoyancy of the water. Any chance you could qualify for that therapy??
Any particular reason you need to cook at all? I get away with very little. I eat my fruits and a lot of my veggies raw. Egg whites and sweet potatoes are my main cooking, done fast in the microwave. Buying pre cut is a must for me. Nothing wrong with frozen. I get a cheat in that my Mom cuts up stuff for me that is not normally sold pre cut or frozen. Maybe your daughter could cut up stuff for you.
All the best with it -you can do this!
Good luck with sales,
{{{gentle one arm hugs}}}

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JANISMKW 10/6/2014 11:14PM

    emoticon emoticon emoticon emoticon On your book being published! What a huge accomplishment!

Best wishes to you as you work on your fitness and food. Any little thing you can do in the right direction will be good... a little strengthening, a little sweating, a little stretching. And whip up a batch of any vegetable, whether you steam, microwave, roast, saute. There are frozen without salt or fresh pre-cut. Keep it simple and try to plan ahead.

Or, for example, you can throw a whole cauliflower head in the microwave or steamer for 10 - 12 minutes and cut it easily when it's cooked and soft.

{{{Hugs}}} Have a great day.

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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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