Chronic Pain

A 51 year old female living and dealing with lumbar back pain and fibromyalgia. Sharing things I do for relief, reduce stress and control weight gain.

Friday, December 6, 2013

What's "Not" Happening

It's been so long I decided best to go back and read my last post.  How long ago was that now?  I've been a slacker...but I have a good excuse ok?  I'm not going to tell you I haven't had time.  We all have the same amount in every day.  I just haven't physically felt like it period!  Here's why.

During the week of my last post I started the move with my rheumatologist to try something for the fibromyalgia pain.  I've been putting if off because I don't like the choices of drugs for FM.   I had reached the desperate, I don't care any more, pain level.  "Give me something, I just want to feel better".  That's what God said through my thoughts when I opened my eyes that morning.  You can't deal with this any more.  So I emailed my doctor and asked him what he thought.  

At first he reminded me we tried it in 2011 and I asked to stop taking because of side effects and you didn't thing it was helping.  His positive side was that it was not "full blown" or a "flare up" at that time.  Now your experiencing the real ugly side of it, it can't hurt to try.  I wrote back and said, Lets go.  Last time one of the two side effects went away after two weeks even though the other hung around.  I'm ready to try anything.  So he recommended I start with a night time dose. 2-3 hours before bed time and 2-3 hours when first up is the worst.  If we can get results with a bed time dose that would be great. If that's not enough we'll make changes.   Sounded good to me so I started Thanksgiving Eve night.  I thought I noticed a small difference the following morning but didn't think possible to notice results that fast.  Night two, Thanksgiving night after traveling to and from D's families home town, even more noticeable.
D with his dad and one of his sisters

My family came here the day after Thanksgiving.  I had little to do.  My husband did the cooking.  My daughter brought pie and a dish.  I made a cake.  D's birthday was the day before and my moms the next day.  So I baked a birthday cake.  Not a big deal.  My granddaughter stayed the night before and she even helped.  Being on my feet a lot really effects how I feel also so I kind of jumped the game and took some of the medicine before the all over pain started with a morning dose. That has been the only day I've taken more than bedtime.  That night was my third dose.  Definitely a noticeable difference when getting up in the morning on Saturday.   I can't tell you how pleased I am with the results so far.  

Always ready to pose
My silly grandson

This medication does not effect my back in any way except that one pan level 8 is easier to manage without another pain level 8 present at same time.  I emailed Dr. C back that following Monday morning to him know I really felt like I was getting some good results.  He was thrilled to hear and hoped it continued.   

That week end after Thanksgiving brought something new to deal with though.  Life is never simple is it?  On the Saturday my pointer fingertip felt swollen and underneath side felt very tender.  Every time something touched it it felt tingly and sore.  I mentioned to D and he seemed to think I always have something hurting everywhere.   On Sunday it increased and by night time it was really feeling weird and swollen to point I couldn't bend it.  It kept waking me up during the night throbbing. 

When I went to OT Monday am she checked it out and asked the hand specialist to take a look.  Her opinion was I should get right on the phone and make an appointment with my dermatologist.  She said, "this is not going away.  What are you waiting for to happen?"  So I called.  Fooled around for 2 hours waiting for the appointment.  I had blood work at 8.  Saw my social worker at 8:45.  The OT at 10 and the PT at 11:15 to 12:30.  The PT did some more needling in my elbow and my second session on my back.  She inquired about results from the first but I let her know I'd traveled, had a day of company, and a busy week end.  Not to mention starting a new medicine in the middle of all that.  I didn't want to mislead any information to her.  I let her know in all fairness it wasn't a good week to try and judge on that.  

On to the dermatologist and he decided it was paronychia.  He treated it like staff to be on the safe side.  He said he really felt like that was what it was but without any infection present at this point to tell.  A medium dose antibiotic and recommended warm soaks or compresses which ever I preferred.  And when will this throbbing stop I asked him?  It kept me awake much of the night.  The soaks should help and after 2-3 of antibiotics in system I should feel much better.  I know I'm a pessimist, but I drove away knowing it wasn't going to be that simple based on how much it hurt.  Monday night it was worse.  Just couldn't sleep.  I soaked it on and off during night.  Tried propping it up.  Tried the TV to take my mind off of it.  Nothing worked.  At 5:30 am I gave up and got up with my husband and made coffee and tried to stop thinking about it.  I had my gloves on I wear for hand swelling at night and when I took it off in light I couldn't believe the difference it how it looked.  Oh goodness.  No wonder it's hurting even more.  It's even redder and more swollen.  

I called in at 8 when they opened and requested a call from the nurse.  At 10 I called back again.  What gives?  You saw me yesterday, I'm not making this up.  Finally at 1pm they called me back and said I needed a steroid Rx to help get the swelling under control.  All fine and dandy but I could have started on it this am.  Now I will be taking it in the evening when I haven't slept for 2 nights.  Prednisone always keeps me awake.  My pharmacist says, "didn't I see you here yesterday?". Yes sir, for the antibiotic.  In my opinion they should have given me this then too.  And yes, I was here Sunday also picking of three of the many others I take.  That's why you know me by my name.


I get home and eat some yogurt and slam back 3 prednisone's and pray that I'm awake from that and not from the throbbing feeling all night.  Unfortunately the one dose at 3pm didn't handle it.  Now on Wednesday, day 5 of the onset I see something very scary looking under my skin and a small black area under nail.  Of course this scares me.  So another call goes in.  When I reach someone I explain how many days I've taken antibiotic and i've started the prednisone.  The doctor said to call if 3 days go by and it's not better or it starts to drain.  It's not draining but it does feel like my finger will explode if it doesn't soon.  So that means it's not better!   I seriously thought about doing it myself.  I wasn't scared of poking my self just inflicting the pain to drain it.  They asked me to come in at 2:30 and I gladly agreed.

He took one look and said he was surprised I was back.  He really thought we caught it early before infection would get to that point.  He froze a small area and did a little slice and started draining.  It wasn't a pretty site and continued for some time to get it all.  I'd never have imagined he would have got that much out of my finger.  On the way home it felt so much better.  Sore, but I didn't feel the throbbing.  It was just really sore and tender.  The tough part was he wanted me to try at least 3 more time before bedtime to squeeze some more infection out.  UGH...I guess I can do this.  Yes you can he said if you don't want to come see me again.  I managed to get it done.  

Before doctor
4 hours later

I had mild throbbing and I slept so good.  I still had to keep it propped up because it tried to swell up again.  It got bumped and banged all day on Thursday.  It's the pointer finger on my prominent hand so every thing I do uses it.  Starting my car, unlock the door, writing, typing.  As long as it doesn't go on as long as the elbow pain I'm good.  I was feeling a little better that day and of course on the prednisone I feel like superwoman.  I bit off a little to much. It was throbbing again this evening.  It still looks amazingly better though.  Not sure why the swelling is sticking around.  I thought by Thursday night it would be gone but not yet.

Here it is Friday.  When I show up for OT/PT both therapist and the hand specialist wanted to know the scoop on my finger.  I showed them the pictures and of course they wanted me to uncover and see how it looked today.  It's still swollen on the underside and numb.  The hand specialist said if it was staff it will take a full 7-10 days to completely clear up.  The OT was smiling at how excited I was that my arm/elbow feels perfectly normal on this prednisone.  Of course I did have the dry needling done last week with the PT on my elbow so she deserves some credit too!  I can't wait to finish the prednisone and see how it really feels.  We did some more needling on my back today.  Nothing fun about it but I think it's helping.

So there it is, between the FM pain and this nasty infection in my finger I just couldn't bring myself to type a post.  I've been so tired.  Not even checking my email.  I really need to take a little time and get some of my surveys done before they kick me out of the program.   I've done what I can to get a little exercise in.  Trying not to worry too much because I've done ok with the WW's.  I'd would like to have lost more but I gained one the week starting Thanksgiving and back down this week.  You never know?  Somehow I deleted my picture.  You'll just have to take my word for it.  lol

I'll be challenged next week starting my treat making for all my doctors and some neighbors I like to share with.  I just try to lick the bowl instead of a sample.  My husband and I didn't get to do anything for our anniversary so we are going to dinner tomorrow night.  After we're going to stop by the outlet mall and after I pick up what is on my list for there, I will be really close to being finished shopping for Christmas.  

My mom and I

Happy Birthday D and mom

Filled with H.O.P.E. this week especially.  Hope everyone is enjoying this holiday time and not feeling stressed out over it.  It will come and go no matter what we get done so take a deep breath and enjoy the reason for the season.


Monday, November 18, 2013

Another down 2 to go

A little more progress!  I'm now at the point WW's says I've met my goal.  My real goal is 130 but according to them 132 is my "safe weight" goal.  I'm ok with where I'm at, but I'd like to get there so I can splurge a little over the holidays.

Friday I saw my pain management doctor.  We had a good talk about how things are going.  I asked him if and when my elbow is better if I can try some needling on my back.  He said it would be ok as long as she stays away from the leads going from spine to battery.  He said they should talk first.  When I go for my OT appointment this week I will discuss with the PT who does it and see if she will call him.  

My back pain seems to be increasing lately.  I think it's the weather.  If there is some chance this will help I'm willing to try anything.  Even if it's temporary.  It would be nice to have a little relief over Christmas.  

Now I can't seem to put anything in my buggy without looking for trans fat or Tertiary Butylhydroquinone.  Commonly called TBHQ.  TBHQ is a preservative which is made from butane.  It's used to delay the onset of rancidness and greatly effects the storage life of food.  You can find a lot of information just by googling "TBHQ"  You will find people who disagree but I think there is enough evidence to stay away as much as possible.  I don't think I can completely avoid it but I surely plan to try.  Here are a couple things I found in my pantry.

red bean seasonings 

I mentioned last week that D got my tree down and put together for me.  It's all arranged and has been plugged in every night.  Other than that it's just there.  My daughter and grandson came to visit Saturday.  We were going to decorate but never got around to it. We spent some time outside then had lunch.  B even did some sewing for me while here.  There is never a dull moment with P around.  A good laugh and a lot of questions!

I'm so proud of my daughter.  She is quite the homemaker.  She has already made the new baby a blanket, outfits and some crochet for her hair.  That girl can accomplish anything she puts her mind to.  I can't seem to get past the dishcloth with my crocheting.  

finding ways to entertain himself!

fixing my favorite shorts

My granddaughter was supposed to come too but she became sick during the week so it was best for her to stay near her doctor.  I got to ichat with her last night.  We read some books and she sang some songs for me.  Thank goodness for technology.  Her grandmother there where she lives sent some pictures to share with me. Her preschool went to a pumpkin patch.  Appears they had a grand time.
shared by "Maw Maw" :-)
 I have actually bought a few Christmas presents. I saved the toy ad and both of my grandkids have circled toys they would like for Santa to bring them. This is a big help for Nonna.  I'll bring it with me and hopefully that shopping trip will be successful too!

I can't believe Thanksgiving is less than two weeks away.  I'm already getting anxiety about being prepared.  It will all be fine and I have to remember that.

It's getting late.  I'm closing to try and get some rest tonight.  I've been having trouble sleeping through the night with my back and arm hurting together.  It's been slow but I can finally say I'm showing signs of improvement.  I've increased my number of reps the OT has me doing at home. The majority of the pain is at night again.  

Ha, I just completely forgot to hit publish. I signed on today to read some of the blogs I follow and see my post in drafts.  Felt like I needed to explain why the days may not make sense!
Have an awesome week.  Watching DWTS can't wait to see who wins next week.

Not giving up H.O.P.E.


Bend at your hips not at your waist.

Avoid lying on your stomach.

Lift heavy objects no higher than your waist.

Sit down to put on socks, shoes, pants--don't bend over
Get down on one knee before picking up
a small child or infant from the floor.

When reading, don't bend your neck or shoulders --bring
your book up to your eyes by placing two pillows on your lap 
and propping the book on top of them.

Sunday, November 10, 2013

Trans Fat...look for it!

I'm so thankful today was a better day.  I accomplished a few things this morning and went to a Santa's workshop in the afternoon.  When I got home D had the tree out for me and actually put it together.  Now during the week I will work on spreading out the branches like I like them and add some lights.  

I'm trying everything I can to get my arm better.  I decided to try my tens unit I used to use on my back before the IPG was implanted.  It really feels good.  Wish I could sleep with it on!

The main reason of my post tonight is to share with you how good my home air popped popcorn turned out.  I used 1 tablespoon of coconut oil and the serving size listed on bag.( 3 tablespoons ).   I can't tell you the last time I popped popcorn on the stove.  What made me do it today you ask?  I admit I have an addiction to popcorn.  Pretty much every night I have a mini bag of the microwave type.  No butter, just the plain.  3 points on WW's.  What better snack.  Quick, easy and full of fiber.  

A week ago I suddenly had a problem with the microwave type.  I was watching Dr Oz and  he was educating his audience about trans fat.  Even though many food products promote  on the front of the label "no trans fat" when you turn it over and read the ingredients you read things like "adds a dietarily insignificant amount of trans fat per serving" This is an example of Jolly Time 100 Calorie Healthy Pop.  On the front of the box it says, "0g TRANS FAT in bold letters.  I stopped by the store on the way home from the work shop to see if I could find some other popcorn without any secret ingredients I didn't want included.  Dr. Oz noted that major health organizations have concluded that there is no safe amount of trans fat.  Listing a lot of the foods it is still found in today microwave popcorn was one he noted.  It worried me because I eat it regularly so even if it's a little it's a lot bad.  

The FDA has made a preliminary recommendation that to eliminate artificial trans fat from processed foods.  He feels this move will most likely save thousands of Americans lives from heart disease, the number one killer of both men and women.  This really made me want to be more aware.  I started reading all my labels in the pantry.  Turns out I could NOT find a popcorn that was safe to buy.  I bought a bag of popcorn kernels to pop at home.  It turned out delicious!  I'll never want microwave again.  I really thought it would be a pain to pop it.  It took 4 minutes and the coconut oil gave it such a great flavor.  I added a tiny bit of salt.  I can't say enough how flavorful it was.  I dirtied a pot but other than that it was not mess or problem at all.

So..FYI be aware of your labels friends.  Take the time to read ingredients.  Trans fat leads to all kinds of problems.  I don't know about you, but I surely don't need any additional.  If you'd like to read more about the subject go to Dr. Oz's home page and type trans fat in the search bar.  

I keep resetting my walking goal over and over.  I'd meet the time limit I set and some of the time I haven't walked in the entire period.  This time I made it!  Tomorrow was my dead line ( I wasn't even aware of that ) When I walk I usually walk a mile or a little over.  I've been trying to get to two for some time.  So hurray for me!  I made it today!

That's why I never give up H.O.P.E.

Pajama Day

half a pound!
Today has definitely been a pajama day.  D and I both have been battling the sinus yuck this week.  Today that is a minor issue though.  This morning everything hurt as usual.  The difference was that nothing helped.  Pain medication, 4 liquid advils,  heating pad, ice pack, or my stimulator.   For some reason I'm having a lot of muscle pain in my legs today.  My arm is driving me nuts too.  At OT yesterday we both agreed I was improving so whats up today?  It's been a long time since I've given in to this wicked pain that seems to run my life at times.  Today has surely been one of them.  

I did some cooking last Sunday so I was happy to have something left to eat and not have to cook.  WW's Chili for lunch and broccoli soup and sweet potato for supper.  Killed both chili and soup just in time.  I'm still in my pajamas at 3 pm.  

So while I'm having to take this day of rest I'm watching some Christmas movies on LifeTime.   I'm hoping it will help spread some cheer in me to get excited about this upcoming holiday season.  I'm also charging my battery.  Something I never want to sit still long enough to get done.   We talked about decorating...wait start decorating this week end.  I don't decorate in one week end.  Last year I worked on my tree for two weeks.  Hey, it got done though.  I do what I can. 

What is really bugging me right now is knowing that someone is unhappy with me and my husband.  We both feel the same about having an enemy.  We never want to have one.   I've always let it bug me to death if someone was upset with me.  Others would say, "so what it's their problem".  I don't have to be best friends with them, but I don't ever want to be in a position that I have to avoid someone if I see them.  Right now, I'm in that situation and I'll work hard until I change it.

During the early part of the summer my neighbor called me to the fence to talk to me.  I didn't think anything of it because we talk at the fence often.  I've shared plants with her.  Shared baked goodies with her at Christmas last year.  When I first met her I thought we'd get along great always because of a common bond.  Pain.  She's had hip and knee replacement.  Back issues that cause her pain.  Another words she's hurting all the time like me.  She'd fuss at me when she'd see me doing something outside she thought I shouldn't be doing.  It felt nice to know someone knew, or at least I thought, how I felt.  

Back to the conversation at the fence.  She told me she was really unhappy about the extra fencing my husband had put up for privacy.  She said it looked really tacky on her side.  ( I noted her and my husband deciding this earlier in the year in a post along with a picture )
We added the additional height to fence because she was complaining to the neighbor on the other side of her and he shared with us.  My husband just confronted her while he was outside working in the yard and she agreed it might be just the thing for her not to feel like we were invading her privacy.  On this day though it was obvious that there was more to it than that.  She had a tone in her voice I'd never heard before.  She told me she wished we were more like the people who lived here before us.  They didn't have so many things in their yard and they didn't invade her privacy.  I told her we never intentionally look at her in her yard.  I can see through the fence from my patio at anytime and see her when she is on her patio so I wasn't sure of the big deal.  It turned into something ugly because I was so shocked at where it all was coming from.  I ended up telling her I didn't like the way she was talking to me and I was going inside.   Needless to say she was not happy with me that I stood up for myself and told her a few things she probably didn't want to hear either.

I was in tears when I went inside.  I couldn't let it go.  My anxiety went right to the roof.  I called D and couldn't reach him so I called our HOA president.  She had already heard from my neighbor.  What?  I couldn't believe it.  She told me she was about to drive down to her house and see for herself what all the hoop law was about.  I asked if she'd give me a call after to tell me what was the REAL problem.  An hour later our HOA president rang my bell.  She came in and asked to go look in our back yard at our deck, fence, patio and shed.  "Are you serious?", I asked her.  She said in a nut shell that she's never liked the fact that we even have a deck around our pool so when we finished and started using it it just made her unhappier that we could see over the fence at times.  Then we had the nerve to have a patio put up.  I guess she didn't like the way it looked.  We had it run past our patio on the side that is on her side to cover my husbands pit so when he is grilling and it may rain there is no problem.  She swore it was going to drain in her yard.  (even though we had gutters around the end )  The president said she had taken pictures while the people were installing the patio.  She showed them to her that's how she knew.

There is so much more to the story, but I'll tell you  bottom line is we believe she is just an unhappy person who doesn't want us to be happy either.  I'd never thought that someone like herself  (disabled) couldn't  understand that I have to have the deck to get in and out of my pool.  To be completely honest many times last summer when I was in there I thought of my neighbor and how she would benefit getting into the pool.  I never took the time to ask her because I really thought she'd refuse anyway.  Guess now I'll never now.  I want to tell her but she would never believe me.  The HOA president told me she was clear on one thing, she'd was going to do what ever it took to get us to take down our deck.  We were definitely willing to take down the fencing because we never liked it anyway.   She informed us that she would settle with just that.  "What can we do?", I asked her.  She wants your deck to come down too.  

I was so shocked.  For sometime I let it eat me up.  I was angry one day and so hurt the next.  What did we ever do to have her feel this way.  The houses that are behind ours, two to three down, have a party at least once a month.  It starts early in the afternoon and goes late into night.  Loud music, cheering, lights and obvious parting.  Now if we can hear this from our patio I know she can hear it from hers.  That my friends is something to complain about.   We have never had anything even close to that.  We hosted several small gatherings before and after this incident but saw nothing in these occasions that would cause her to be angry.  We thought about contacting an attorney but decided to let sleeping dogs lay.

Nothing has been said the rest of the summer.  I can't say it hasn't been on our minds.  What is she up to?  Did she decided to just let it go?  Well, we got our answer.  Wednesday night we had a HOA meeting at the library near out home.  I was a little surprised to see her right there on the front row when I walked in.  Oh my, I hope she isn't going to bring things up.  Surely, she isn't.  As we went through the agenda I held my breath through every topic.  As the end neared she raised her hand and asked to talk about the grandfathering rule.  At the previous meeting before this particular night that topic was discussed and voted on.  A decision was made that anything that was erected during the time of no architectural committee (2009-2013) would be grandfathered in and we formed a new architectural committee to handle these types of issues in the future.  (there are several other throughout the neighborhood) shocking, I know.   My neighbor was clear to the board and our management company that she was not settling for that.  She wanted something done.  

First of all, I should have never let her get me so upset.  My blood pressure hit the roof along with my big mouth.  I was hurting from 1) in general because it was the end of day 2) sitting in a chair for an hour and a half.  I did get up a walk on the back row multiple times to stretch.   3) just the stress of wonder why, why, why.  When she starting telling this complete stranger that we look at her over the fence, I just lost it.  I told her, " Get over yourself, we do not want to look at you".  My husband was so embarrassed.  I was too later on.  At the time I was pretty proud of my rude self stooping to her level.  I'd just had enough.  Past my chin, it was up to my mouth and I was chocking on it.  Just what did she think she could do?  I can tell you what ever she can, she will.  And why?  That's something we may never know I guess.  It's a complete nightmare I can't stop worrying about.

The next evening our HOA president stopped me as I was walking my dog and wanted to talk about what happened.  I told her I really didn't want to gossip and was so sorry I had such an awful outburst at my neighbor.  I said I would be willing to apologize if she would listen to me.  The president said to hold off because Saturday am the management company was meeting to discuss ours and some other neighborhood disputes.  I forgot to mention as we left the meeting that night the management company asked us to send them pictures of the back yard and our pool with deck.  

I had a discussion with an attorney on Friday regarding the matter and she made me feel a little better.  She recommended since we will be living next to this woman for some time the best deal is to try and work anything out with her.  She said to ask her to sit and talk with my husband and I and someone from the management company as a third party for a witness.  The attorney said our best hope is to try and connect with her on a level she can relate to, our common chronic pain.  Explaining to her how helpful and beneficial it is to me.  Also, how I was interested in helping her out by letting her use the pool.  If that did not help at all then let her go forward and we just sit back and see where she can go.  Not far she is pretty confidant of.  If she does, we will just need to call this attorney back and she will already be aware of what is going on.  

My point in all of this goes back to what I said in the beginning.  I'm loosing sleep over the fact that someone is unhappy with me.  I really want to make it right.  I don't really care who is wrong and who is right.  I have to live next to this woman for some time.  If I were to fall and knock myself out coming up the drive ( silly, I know but it could happen) I would feel better knowing she had enough compassion to call help for me.  I would definitely do the same for her even if we hadn't cleared up the.

So enough about that drama.  I took a break from this computer earlier and got wrapped up in a movie then let myself just roll right into the next one.  Tomorrow no matter how I feel I have to get moving again no matter how hard.  It's late, I'm closing.  I'll fill you in if I get word of any new news.  I can tell you I almost feel like a prisoner in my own home like she is watching my every move.  I have to move past this.  I'm going to keep thinking WWJD?
I know my answer will come.  Good night everyone and I hope your pain is tolerable. 

Living with H.O.P.E.

Thursday, November 7, 2013

Disability Fraud

In October 60 Minutes had a segment regarding Disability and the state it is in today.  The following week at the end of the show they added a bit at the end to say they had a enormous response following the air of that program.  Responses from people who are on disability and really need to be on it.   Most I agree with and a few I don't.  It's like the old saying goes, "the good have to pay for the bad".  You can go to and read them if you like. Unfortunately, the show said very little in defense of people who qualify.  If your just curious of what was said, I'll fill you in.  Don't quote me because it was a couple of weeks ago, but for the most part this is what set people off.  There is an incredible list of comments made about the segment mostly from people on disability.  I went back to recap some of the shows important facts and I saw them all.  60 minutes said they got a lot of feed back and they were not kidding.

Sen Tom Coburn, M.D. of Oklahoma talks about how well-heeled and well-connected lawyers, doctors and judges have gamed the system for their own profit at the expense of taxpayers and the truly disabled alike.  On first take of the show so many were angry feeling he is not on our side.  I don't think he is  against us.  It's about all the people on disability that should not be because of these lawyers who work with doctors who have 13-20 reports signed fraudulently in same day all by same doctor.  This is the case for Eric Conn an attorney in KY who has 3rd largest disability law firm.  He has made 13 million dollars in legal fees paid for by the federal government in the last 6 years.  This is the kind of thing Sen Coburn wants to put and end to.  That, I am not against. 

What does make me upset is just what upset the commenters.  They only talked about people on disability who should not be.  People who had help form a shady attorney.  They even went so far as to state that a lot of aliments were subjective ailments.  Their examples were Fibromyalgia, chronic back aches and depression.  (noted were the FM causing joint and muscle pain along with chronic fatigue ) He states, ( Sen. Coburn) that if there is any job you can preform in our economy where did all these people come from?  This many people you ask?  12 million would be the answer.  Are you shocked by that number?  I was.  Up by 20% in the last 6 years years.  

In 1971 fewer than 20% were represented by an attorney and now over 80% of claimants are represented.  What they don't say is the percentage of claimants who are turned down automatically on the first application automatically.   One particular section on the show focused in area in WV where there are few jobs due to plant closures and other big business closed.  Most people were out of work.  Unemployment benefits expired and they were desperate.  Filing for disability was the next step in their need to survive. A lot of these people were over 40 so they had some type of ailment or impairment.  They filed for disability based on that.  Remember, I'm repeating for you not saying I agree or it's ok.

 Lawyers who no longer work for the firm who helped a lot of these people get benefits say most cases should have not made it to court.  These attorneys are adding to the bad rap for the disability system seeking out people to help get benefits.  Every day I see at least 2 commercials for lawyers who only do "disability cases".   They list all the ailments you can have to qualify for benefits.  I assure you it's not that simple. 

True disability people will get hurt when this fund runs out of money because of the crooks in this system.  Senator Coburn's final point. " These problems show you how broken it is. You take a good concept that's well meant,  don't manage it, don't monitor it and congress doesn't oversee it then you end up with places like WV counties, where you are born to be on disability".

No one is getting rich on disability benefits.  Disability is a minimum wage benefit with the benefit of Medicare after two years if you choose to accept it.   I haven't given up on going back to work.  I would love to get up and go to work and be with other women and earning a paycheck  again.  Another joy in that would mean my pain level would be down enough that I could work 8 hours a day.  Until it is stripped away from you, you have no idea how devastating it can be.

A lot of the area the story was about used FM and depression in their claim.  It was terrible the way they made it sound so unreal.  They said, " kind of hard to prove you have it, but also hard to prove you don't".  Let me assure you, those of us that are on disability for a "just" cause would much rather be working and not dealing with the pain we live with.  I personally miss being out in the work field.  I miss the connection I had with my co workers. Every office I worked in (dental) my co workers were like family.  We all supported each other in work and personal life.  I also miss my salary which was WAY more than disability benefits.  

When I first applied in 2011 I had all my medical records starting from 1998.  My attorney did not pay any doctors to fill out his form.  He asked for copies of all my records from every doctor starting from 1998 regarding my back and had his staff comb through them and decided for himself he if thought I had a case.  I can tell you it may be easy in those two stories of KY and VA, but it wasn't for me.  I  have a friend who is in way worse shape than myself.   She has had 3-4 surgeries on her spine in different areas over the years and she was turned down.  She uses a walker and like me can only sit or stand for a limited amount of time.  She like myself worked for as long as she could dealing with her disability.  Her doctor is the one that told her she could no longer work.  She was also denied and had to appeal.  What are people in this situation supposed to do?

I'm sure people who know little or don't know anyone on disability let this program leave the term "disability" as a cheating system for people who just don't want to work or go back to work if they lost their job.  They cannot speak for everyone.  My voice is one to be heard that we're not all liars and cheats.  It's hard enough to feel your being judged all the time by people who don't know you if your disabled or not.  Don't judge a book by it's cover.  Just because someone looks ok does not mean they are not disabled.  I bet you know someone who is one disability and shouldn't be.  I knew someone in my past when I was young who definitely was capable of working and just didn't want to.  She was just fine with the minimum wage check every month to be able to stay home, v smoke and play cards with her friends all the time.  Keep in mind everyone is different.  Be open minded if you don't know the facts.

I know a lot of disabled people were very hurt and angry over some of the things said on the program but in the long run I think Senator Coburn is on our side.  He doesn't want to take our benefits away, he wants us to be able to keep them.  Which means taking them away from people who don't qualify "legally" so the program will not run out of money in 2015 like they are stating it will.  That is a pretty scary statistic.  

Disability will be the first entitlement program to run out of money.  When the trust runs out the truly disabled will see benefits cut or every working American's will have to pay more in taxes.  If you do the math, (disability checks will be cut by 20 or 25% on what they receive each month) that's a good amount of money from an already small income.  What do you think?

If you'd like to know where my information came from you can go to 60 and 60 to see the program in its entirety. 

Full of H.O.P.E.


when you're at the end of your rope. With less of you there is more of God and his rule

when your content with just who you are--no more, no less.  That's the moment you find yourselves proud owners of everything that can't be bought.

when you care.  At the moment of being "care-full" you find yourselves cared for

when you've worked up a good appetite for God.  He's food and drink in the best meal you'll ever eat. 

Monday, November 4, 2013

Happy Day of Birth P

Saturday was my grandsons birthday party.  Thanks to his wonderful parents it's always an all out party.  A good time had by all including the adults.  His "official" birthday was last Saturday the 26th.  Let's start by taking a look at his first day of life then his first birthday picture.
Hello, can someone get this big hand from around my neck

My mom, myself and P's other grandmother had the pleasure and miracle of watching this special little boy enter into his new life here with his family. He was greeted with tears and laughter.  Never again will I be filled with such emotion.  He was such a good little baby boy.
Given a lot of nick hames but I love his real first and middle name.  A family name first and middle.  

Then a year came around so fast.  It was his first birthday.  I couldn't believe how fast it had went by.  Amazing.  Physically for me it was a hard year but watching my two grandchildren grow, change and having their first birthday made it much easier to keep busy and look forward to the time I could spend with them.  His mom had beautiful decorations all hand made by her for Sesame street theme.

lets test out this cake

just look at those cubby cheeks :-)
 Another year just seems to fly by.  Not such a great year for me.  This was the year we lost my dad, I lost my job and I found out about a couple of other medical issues.  Having these two in my life helped me get through it all.    His second birthday was a LSU Football Party. 
I can't imagine why or who choose that theme but he is definitely a "real " fan!

Oct '11 P=24 months and A=26 months Year 2

Then after the holidays passed we rolled into year '12.  Of course P had his "big" party but somehow Nonna did not get he picture.  Seems harmless enough, but I love my pictures with them  Especially at an opportunity like this to go back and put them together.   We've all changed....  I have all with A on her birthday also.

October '12 Our Superman Hero

Oh well, no Nonna but we have one with Poppa!!

Which brings us to this year.  He is now 4.  Smart little boy,  Very funny.  He loves to keep us laughing.  He is getting so smart from all of the questions questions he asks.   Many are very funny loo.  This year you can bet I didn't miss my birthay photo outside.  I didn't manage to get one by the cake like I wanted, but sometime you settle for wheat you get!

We did a funny and a serious!
All of us together Year 4

With his awesome Ninja Turtle cake

Next year on his birthday he will have a little sister to be following him around waiting for her first birthday to come.  Two parties.  Oh no mom you better start a new fund.  He he! 

Happy Monday!  Do something for you that you've been thinking of doing and haven't.
Full of H.O.P.E.

Friday, November 1, 2013

On the lighter side

Again, I'm late with this.  Yesterday's blog was just to long to add this in.  No loss, but I am happy with a hold.  I'd still like to get to my goal so I will have a few pounds to spare over the holidays.  Right now I'm back in the clothes I wanted to get in so that is a positive thing happening when others are very challenging right now.

I have a new obsession.  I've been eating sweet potatoes for quite a few months now.  I'd never liked them in the past.  When I started counting calories before WW's I decided to try one since I hadn't in years.  Every since then I have one at least 3-4 times a week.  Earlier this week I was browsing through some WW recipes and saw sweet potato chips.  I changed up a little bit.  I used coconut oil instead of EVVO and I omitted the salt.  I sliced them to thin the first time but I have it down to perfection now.  They are so tasty just from the coconut oil.  For me, no need to add anything.  They were very tasty plain.  I don't add butter to my sweet potato but I do sprinkle cinnamon for a little spice and cinnamon is good for you.

sweet potato chips

Yesterday I made some muffins that you've heard me talk about many times. I've had some people ask me the recipe so here goes.  I change them up a lot by using different fruit and some time a kick with some semi sweet chocolate chips.  So yummy for breakfast.  Tastes like your having a dessert.  I discovered on Pinterest but the real credit goes to "Greenlitebites" Adventures in healthy eating.

Here is what you need.  I tend to get everything out and measured before I even start to put together.  Long ago I was dumping all kind of ingredients in a bowl and got to the last one and oops, I didn't have it.  I've never made that mistake again and this is one of the ways I prevent it.  My brain is easily overwhelmed by to many ingredients so this is how I roll.  I tend to shy away from any recipe that looks complicated.  
  1. 3 cups of old fashion or rolled oats
  2. 3 mashed bananas (the riper the better) notice how dark you can let it get in pic
  3. 2 eggs
  4. 1 tbsp of baking powder
  5. 1 cup of almond milk (any will do, I use the unsweetened vanilla)
  6. 1 tsp of vanilla extract
  7. 1 cup of blueberries, raspberries or your favorite berry
  8. 2 tbsp of Nestle chocolate chips
RASPBERRY/CHOCOLATE CHIP LOWFAT MUFFINS/ Preheat your oven to 375.  You can't really mix it wrong but here is my order.  I mash bananas well with a potato masher.  Then I mix the two eggs (room temp) add vanilla extract in the egg mixture and add both to bananas.  Since the vanilla almond milk is unsweetened I add 1 packet of stevia to it.  ( I tired this after baking a few times and it makes the muffins a little sweeter ) Add the baking powder to the dry oats and mix well.  Next, I add both milk and egg/banana mixture to oats and mix well.  I like to cut my blueberries in half.  A personal preference I guess.  This was my first time to use raspberries and I cut in 1/3's.  Add chocolate chips then slowly fold in berries gently so they don't smash.  Bake for 25-30 minutes or when edges are brown.

The point value for each muffin is 5 points if you use larger muffin tin based on serving size of 9.  (that is the amount the mixture makes)  If you use the smaller muffin pan that has 12 without the chocolate chips the point value is 3.  ( I've only made smaller muffins with just berries so I do not know the point value of smaller muffins if you add in chocolate chips).  Make sure you eat one while they are warm!  I let them cool and put each in a sandwich bag then in a gallon freezer bag.  When I want one for breakfast I take it out the night before and put in the fridge.  

I had an OT appointment with W today.  She is the best!  Such a genuine person and always encouraging me.  Even though I'm impatient wanting this to be over she is able to help me see I've had improvement and help me stay positive.  Unlike some therapists she gives me her complete attention.  That really means a lot to patients.  If you live in my area and find yourself needing a great OT please contact me for her information.  You'll be so pleased you went there.

Our little Ninja

Our Strawberry Shortcake
TGIF my friends!  Waking each day with H.O.P.E.

Thursday, October 31, 2013

Fibromyalgia - a controversial silent disease

I will apologize right away for the length of this blog.  I've been coming back to the draft for days trying to cut out things but everything is important to "me".

Since my post in September where I open myself to ridicule of telling how saddened I am to have it confirmed I have Fibromyalgia(FM) I've done a lot of research. More intense research than when he first starting talking to me about it years ago.  Then, I was reading all medical sites like WebMD, The MayoClinic, Wikipedia and  There were more but these are the ones you would recognize.  Since September I've been on a different search.  Reading from patients mouths, hearts and minds.

Never in all my years of dealing with my numerous aches and pains; back, muscles and joints have I felt so vindicated by strangers. Every blog or article I read was exactly how I've felt and feel. FM patients are good at hiding their pain for fear of ridicule. As I mentioned over a year ago even a doctor I worked for thought FM patients are just crazy and that's the title the doctor gives them because they can't find anything else to diagnose.  That is so far from the truth.  Our pain is real.

You don't walk into your rheumatologists office and have them diagnose you with FM in one visit or even one year. I write this post to share with you a few bits and pieces that were important to me.  Important because it validates everything I have tried to understand over the past years.  Why do I hurt everywhere?  Why am I so tired all the time?  Why can't I sleep? Why is it so much worse when I first get up in the morning?  All this time I've been looking to my doctors for answers when others who feel just like me had all the answers.

I remember searching to see if someone with a Spinal cord Stimulator had a blog. I found a few.  Reading them inspired me to write, even if no one read.  It made me fill like I would get things off my chest.  Now I am searching through so many more Fibromyalgia blogs than I ever thought I'd see.  I believe I read 1 in 20 people have FM.  Every definition down to the detail is how I am feeling and felt for a long time.  To some, it would have made them more depressed. For me it has been encouraging.  This blog world is my support.  Not to say my family and friends are not, but your still tend to doubt even if the people you love understand.  

I can be fine one day and another I can do something that is simple for most people.  After I am done I really to tired to do anything else.  My husband struggles with this.  When I say I am so tired he wants to know why?    

One thing I read in common was how no matter how much pain or how bad of a day a blogger was having they made their self exercise if they could possibly do it. I've read walking and swimming are two of the best exercises for FM.  A plus since they are great for my back also.  The problem is I'm doing very little walking these days but not because I don't want to.  For some reason when I'm hurting I can tolerate my recumbent bike much better.  If I stop moving I will become so stiff the end result will be bad.  

Exercise is very important for anyone, but especially if your dealing with chronic pain.  Chronic pain = depression + FM = depression + exercise = accomplishment. On the other side of that coin I'm learning to say no, to go lay down if I need to and not let the undone things bother me so much. 

At my OT appointment on Tuesday the PT did some dry needling for me on my triceps and the muscle where it meets the tendon near elbow.  It wasn't that bad compared to procedures I've been through previously.  It was by no means comfortable though.  It's to soon to tell how much it has helped.  The swelling is down to an inch now so that is definite improvement.  I go back Friday and she will re evaluate everything and write my notes for my rheumatologist on our progress.  I can't help but wonder if the FM has exacerbated the whole experience.  

Below are some pieces I mentioned in the beginning.  If you have FM you know all about it.  If you don't, you may know someone who does and it will help you have a better understanding what their day to day life is like.  I think we all want empathy not sympathy

From Scope- an award winning medical blog

I can’t imagine anyone relishing the idea of being tired, in pain, or suffering from “brain fog” for one day, let alone for months or years. If you have fibromyalgia, this is what you experience on a regular basis. Yet there are people who believe that fibromyalgia doesn’t exist – that it’s a made-up disease with the purpose of appeasing patients, giving their complaints a name.

Incidences of muscle pains characteristic of modern-day fibromyalgia have been documented for centuries, but only in the 1970s did the disease begin receiving serious attention as physicians began to better identify trigger points, inflammation, and fibromyalgia-associated issues such as sleep disorders and irritable bowel. And only in 1987 did the American Medical Association recognize fibromyalgia as “an emerging condition.” But saying it’s a disease and convincing non-believers are two different things.

I’ve been asked what it’s like to have fibromyalgia and, just as it’s difficult to diagnose, it’s difficult to explain. Although I was only diagnosed a few years ago, I can trace the symptoms to my teens. I often experienced unexplained bouts of exhaustion and pain. I never slept well. I had other fibromyalgia-related physical issues, but no one could figure out what was wrong. After a while, I began to believe that it was all in my head. I knew I felt the pain, but there was no explanation. I knew I was exhausted, but everyone is tired – why would I be any different? The other symptoms? I was overplaying them, complaining too much, imagining them, looking for attention, wasn’t I?

My family and close friends were (and still are) wonderful. They never made me believe that I shouldn’t be feeling what I was experiencing. They tolerated my quirks, such as the hypersensitivity that results in a very strong startle reflex and not being able to stand the feel of certain things against my skin. (It wouldn’t surprise me if the princess in fairy tale The Princess and the Pea had fibromyalgia!) My husband, my children, my friends, all helped me when the pain was bad and the exhaustion overwhelming. But feeling so different and not knowing why take a toll on a person.

I did what many with fibromyalgia do. I withdrew into myself. By withdrawing, you minimize your chances of being criticized or attacked by those who don’t understand your “nonexistent” illness. But at the same time, because you are internalizing everything, your symptoms become worse. Your mind plays more games. And the cycle continues.

I cried when my rheumatologist told me I had fibromyalgia. I told him I wasn’t crying because I had it, I was crying because I finally had validation – that this was real. My pain was real. My illness was real. He told me that many patients react the same way. How sad.

A year ago, I began a project called 101 Questions About Fibromyalgia. I asked friends and colleagues for questions, either from the point of view of having fibromyalgia or loving someone who does. I received some great questions but I also received a long e-mail from an editor whom I had never met. Her angry e-mail outlined exactly why fibromyalgia doesn’t exist, point for point, but she also told me that if having a name for my illness made me feel better about myself, then it was OK with her.

This is why many people with fibromyalgia don’t speak out. There is no such anger against people who say they have diabetes or cancer or Crohn’s disease – but it’s acceptable to brush off, deny, or criticize a claim that you have fibromyalgia.

Living with any invisible illness can be difficult. Living with one that still is not accepted by many is so much harder.

Marijke Vroomen Durning, RN, is a health writer based in Montreal, Canada. She is a contributor at, HealthDay News, and other outlets. Find her on Twitter @MarijkeD.

Fibromyalgia is a common syndrome in which a person has long-term, body-wide pain and tenderness in the joints, muscles, tendons, and other soft tissues. Fibromyalgia has also been linked to fatigue, sleep problems, headaches, depression, and anxiety. (National Library of Medicine)


Fibromyalgia is a persistent condition for which there is no cure. It is common for symptoms of fibromyalgia to wax and wane; they may be more severe at certain times of the day, month, or year and they may remit for an extended period of time only to reappear later either for no apparent reason or following a traumatic event such as an automobile accident. But there are ways of coping with fibromyalgia symptoms and preventing exacerbation of pain. Here are some tips:
  • Prioritize sleep – it is important for people with fibromyalgia to maintain a regular sleep schedule and to get treatment for sleep disorders if necessary.
  • Create a quiet environment –chronic pain has been known to intensify in the presence of sound stress.
  • Exercise – regular exercise is known to improve symptoms in some patients. For people with fibromyalgia, low-impact activities such as walking, yoga or swimming are the best choice.
  • Medication – work with a physician to develop an effective medication regime.
  • Massage – gentle massage, deep breathing, and relaxation techniques are all generally considered beneficial with respect to chronic pain management.


Fibromyalgia usually includes a broad range of symptoms including some combination of the following:
  • widespread pain
  • sleep disturbances
  • chronic daytime fatigue
  • morning stiffness in the joints and muscles
  • migraine headaches
  • irritable bowel syndrome
  • painful menstrual periods
  • numbness or tingling of the extremities
  • restless legs syndrome
  • temperature sensitivity
  • dizziness and balance problems
  • cognitive and memory problems
  • mood disturbance such as depression and anxiety
Out of these 13 symptoms I have experienced 10 of them.  2 were in the past and much better but I still wonder? (irritable bowel syndrome and painful menstrual periods) The others are just like the COPING definition.  As bad as I hated having Dr. C tell me this news it feels good to understand what is happening to my body.  A lot of these symptoms I have never shared fearing people will just think I'm crazy.   Temperature sensitivity...oh I definitely deal with that.  Off the scale.  Ask my husband or my daughter.  The last one has been chronic for some time now,(especially the anxiety), but I've convinced myself it was due to my back pain.  My doctors agree, except for Dr. C.  My pain management doctor is the one who had me try two different medications that are commonly used for patients with FM. (Cymbalta and Savalla) Unfortunately neither worked. He never used the title he was just responding to my complaints of hurting everywhere.  

When Marijke spoke of not being able to stand certain things against her skin I almost jumped out of mine.  I never discuss that with anyone.  My husband has heard it a lot but even he gives me the strangest looks.  There are times that I can't be in the same bed with him because he has PLM and if his leg is moving I'm so sensitive to it I have to move!

The last I'd like to say, you know I mean for today, is that my mom has Fibromyalgia and Restless Leg Syndrome. The National Sleep foundation has written that there may be an association between FM and RLS. It's most common (RLS) in patients with FM and those with Rheumatoid Arthritis and she has both.  So what am I crying about?  The NSF also states that FM seems to run in the family though not knowing if genetic or environmental.  I have and continue to pray for both of my children that they don't start experiencing symptoms.  One of the hardest things of dealing with it is getting answers.  

To my friends and family, thank you for putting up with me.  I know you often wonder why I back out or just don't feel like it so many times. Your no need to know attitude has carried me far.
I have the greatest husband any one could ask for.  Even he struggles to live with the depression and anxiety with me.  You see I'm really good at acting.  When I do go out, I fall apart when I come home and he catches me every time.  

Lots of genuine hugs and H.O.P.E. to everyone dealing with this invisible illness.  Theresa

HOPE looks for the good in people instead of harping on the worst in them.

HOPE opens doors where despair closes them.

HOPE discovers what can be done instead of grumbling about what cannot be done.

HOPE "lights a candle" instead of "cursing the darkness"

HOPE regards problems, small or large, as opportunities.

HOPE cherishes no illusions, nor does it yield to cynicism.

Author unknown