Chronic Pain

A 49 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, July 18, 2014

In sickness and in health

I hope everyone who reads my blog that is dealing with some sort of illness whatever it may be has a support system.  There are a lot of things out there to help you.  Like books, blogs, support groups, friends or maybe it's your spouse.  Your spouse knows you like no one else.  I mean, what your really like behind closed doors. Let's face it, I can only hold it together for so long in a day.  Before I rattle on to much I want to point out I never mean for him to be the one to get all the punches. I'm not the same person he married. 

Our story is sort of a Prince Charming-Cinderella story.  I really don't want to get into my first marriage of 17 years to deeply but I have to point out that neither of us were happy for a lot of those years.  We loved our children so dearly and that was the most we had in common.  In the end I was just starting to have some minor trouble with my back.  

When I met my husband I was not looking for anyone to date.  All my focus needed to be on supporting my kids the best way I knew how. Keeping them in our home was so important so we'd have a roof over our head.  A female acquaintance asked me to have one date with him.  I didn't think there was anyway I'd do a second date with him but I'd agreed to the first.  We had nothing in common. I was just getting this girl off my back about it.  I was so much against the date I met him somewhere.  I was thinking I didn't want him to know where I lived if it didn't go well.  (he already knew where I worked because that's where we met)  

To my surprise the date was wonderful.  In one night, he said more things I'd dreamed of someone saying to me or doing for me in the 17 years I was married.  Even dating in high school.  I always seemed to pick the guys who felt it wasn't necessary to do or say anything polite or respectful.  I remember a date or two thinking "when is he going to stop acting so nice?"  He mentioned one night how much I talked about my kids.  I thought, well it's good you know how much they mean to me because they are my priority right now. 

Time went on and we dated for four years.  His kindness and the way he treated me stayed the same.  Every week end it felt like our first date.  He continued to open my door, say how nice I looked, sent me flowers (a lot) and much more.  For years I'd dreamed of what it must feel like to be treated that way and I was living it. 

Over time as my condition started to get worse he was right by my side at every appointment I went to.  Every test.  Every injection.  Every decision we made together. He missed more time off work for me than for himself.  I complained constantly about no answers and all the things that we'd planned to do together over the next few years and that seemed impossible now. 

I'm starting to believe that I met him for a different reason than I'd thought for years.  I'd dreamed of having a man like him love me but then everything changed after we were finally married.  It was almost 5 years to our first meeting.   My pain and illnesses turned me into a different person.  I am NOT the person he married.  You know the old saying, God doesn't always answer our prayers the way we want.  I believed he did put our chance meeting in place but I know it was for a different reason.  Not many men could put up with me when I'm hurting at the levels I am sometime.  

Many times I've said to him "I wish I could be the person you married".  I want it for him, as much as for me.  I've been so angry that he came into my life then I had to deal with this cross I'm carrying.  Ugh....Why why why?  Make it better.  I'm always full of questions and either crying or mad.  Mad as you know what.  He's remains the same.  Calm and cool and trying to keep me positive.  His answer remains the same.  He says, "in sickness and in health" and I mean it.  That even makes me mad.  Why can't he get mad too? I don't understand it.  How can he just accept it.  He'd never married and waited a long time as I for true love.

I thought for a long time that it's because he really couldn't possibly understand how bad I hurt at times.  If he did, he couldn't just be so calm and act like it will all be good in time.  God put him in my life for a reason.  Not the one I thought for a long time but he knew D was the man to be able to handle me and support me at the same time.  This brings me to an article he sent me recently.  He put in the subject line "A good read".  

He sends me a lot of emails.  So many that sometime I just ask him, what is _______ about?  I don't have time to read it.  This one caught my attention and as I read I thought this must be how he feels.  This is why he puts up with me.  He's told me as much.  It's about a man having a conversation with a stranger he meets.  The conversation of divorce.  I'll let you read for yourself.

If the link does not work, I apologize I'm not to good at that kind of thing.  I would ask you to go to his blog "sunny skyz" and the post date is May 30th. I'm also putting on my goole+ page if that makes it easier.   Interesting read as my husband said.  Every married couple should read it.  If my husband felt like the man Matt meets he would have left me a long time ago.

By the way its raining cats and dogs her in Baton Rouge today.  I have an appointment with Mr. R that was supposed to be yesterday so he's going to catch some flack from me because I have to get out in this.  To update you from last post my injection is scheduled for the 28th.  It seemed so far away and I was so disappointed. Now it's just a little over a week away.  Please pray for me that it helps some. I'll take any amount of relief.  

Samantha and Dana I'm praying for you. Please continue to stay in touch.  Our support is so important to our well being. 

Holding on to H.O.P.E. (hold on pain ends)

Wednesday, July 9, 2014

Facing the truth

You've heard this before "Screaming on the inside, smiling on the outside", thats me.  These past couple of weeks some things have come to light.  Things deep in my heart that I know to be true but acting, away from this blog, they are fine.   I still believe one day I'm going to be typing on here about some solution to my pain that I or some medical genius has discovered.  

When I saw Dr. C last Friday he asked me to try the Limbrel again.   Why not try it once a day instead of twice and maybe it won't effect you the same?  We decided on pm in case the dizziness returned it may wear off while I'm in bed overnight.  I was game for that.  I'm desperate.   He also recommended I try adding some turmeric in my diet.  It had been brought to my attention by my friend who convinced me to try the gluten free.  So now my favorite Dr. is recommending so why not?  He told me to do some research and find the best way to use it.  Just adding it as a spice to my food would be helpful.  My friend however had encouraged me to go the smoothie route using the root form.  I found a recipe for making a tea with it.  Since I love herbal teas anyway I chose that option.  

I've had several really tough days where I could barely get out of bed.  I made it to the kitchen and hurt so bad from head to toe I was sick like with the flu.  I tried to figure it out like always.  For once I think  I finally did.  It was that nasty thing called "Fibromyalgia".  I'm finally starting to accept and understand how it works.  If I do something just a little bit out of my range it punishes me the following day.  This was very hard to manage being that I've pushed my limits for years.  

My psychologist changed my antidepressant last month.  Something that is supposed to help with anxiety and FM pain too.  I've really been beating myself up the last couple of weeks trying to figure out why I keep feeling so bad no matter what I do.  I've been Gluten Free for 2 months.  I'm drinking the turmeric tea, drinking ACV, back on the Limbrel, using my stimulator day and night, using multiple over the counter creams and wearing my patches again even though I argue they are too expensive and don't work.  I've been so angry.  At who?  Everyone who don't take care of their self and feel just fine.  I recently overheard a man talking about his grandfather and how he ate fatty meat, drank the hard stuff, smoked since he was a teenager, never exercised a day in his life, overweight and is still going strong at 90 something.  That's all I can seem to focus on.  Does he know how lucky he is?  Why am I doing everything right, but can't seem to get any better? 

Monday morning I decided to get aggressive with getting some relief.  I called my PM doctor, which means I left a message with the nurse, and pleaded to let me try an injection again.  I'm desperate.  A lot has changed since I've tired in the past.  I didn't get a return call until that evening and of course the doctor was already gone.  "I'll talk to him tomorrow"  Seriously?  Then she proceeded to inform me the next day they'd be in another town so I probably wouldn't hear back until Wednesday.  Oh, no problem.  I have the rest of my life.  Excuse my attitude but I'm so tired of dealing with the health care system.  Do you think I heard from them today?  No I didn't.  I was dealing with another doctor today so I didn't even call and complain.  Oh, but I will tomorrow morning.

I started thinking about how my pain increased around the time we changed my antidepressant medicine.  Could this have anything to do with it?  Again...I'm desperate.  I had to call for a refill on something the previous psychologist had me on and I didn't notice had 0 refills until I went to call in the refill.  I asked to talk to the doc since I was on the phone with them anyway.  The receptionist said she'd return my call as soon as possible.  Well, you know what my attitude was on that.  By the time my husband was home from work I hadn't heard from either doctor!  

Surprised, my psychologist called me around 6:15.  We started to talk and I had a complete melt down on the phone with her.  All my frustrations came out.  She pointed out to me that sometime an antidepressant helps with pain on such a small scale that you don't even realize it.  When we changed it it's possible that I had an increase in pain overall.  If it wasn't working as well on my anxiety too that could effect things.  This particular drug was supposed to target patients with FM pain.  

We decided together until I see her in two weeks to start back on what I was taking previously since I had some on hand.  If I notice my pain decreases a little we may increase the dosage on it.  If nothing changes she said we will try another she had in mind before we tried the one I started last month.  She wanted to review my genetic testing again before making any final decisions.  I'm ok with her decisions.  At least I feel like something is being done.  I'm scared of "no" change more than "change"  at this time.  It has to get better than this.  I've come to far and tired so many things.  

As far as my PM doctor I'll be calling them again tomorrow.  It's terrible that two months in a row I've not been able to get them to return my call.  I'd love to get out of his practice.  I like him and the doctor I saw there before he did my implant but they have become this huge practice that hustle people in and out like cattle.  They go to a different town every day.  My fear is where will I go? No other PM doctor will want to treat another doctors SCS patient.  

It's also time to see Mr. R.  The 16 programs I have, have been good to me.  I was only using a few, but they kept changing every few weeks.  Now I can't seem to get one to keep me comfortable.  I was putting off until I got some of these other issues resolved but it can't wait now.  For his sake...I hope he's reachable.  

I'm just so tired of feeling bad.  I can come here and complain all I want and not feel bad about it.  I'm sorry to say that beside a few family members ( like my daughter  and my husband ) I've pretty much shut everyone else out.  Just because...I have nothing nice to say right now.  I'm pretty good at faking it but I just can't right now.  I'm so tired, so worn.  A close friend left me a message last week and said she was sorry for being a bad friend and not checking on me.  She asked me to call her back so we could catch up and I feel awful that I haven't.  She's not the bad friend, I am.

I guess that's enough venting.  No sleep doesn't help things either.  I want to try and stay with my closing I've been using.  Having HOPE.  ( Hold on pain ends)  My hands are slipping.... It's so hard right now.  

Holding on tightly.....gentle hugs

Tuesday, June 17, 2014

New News

If I pick up where I left off I'd share that I love my new psychologist.  She is a lot different than who I was seeing.  I liked her though, that's very important for someone who will be prescribing you medication that can change your total attitude and nature. 

She had a drug in mind at the end of our session that she thought she'd really like me to try.  UGH...I hate coming off of antidepressants.  It's always so scary.  Not to mention I'd just had this awful experience with the Limbrel that was still slightly present.  She went into discussion of why she was considering this medication.  As I left she wanted me to just take my current medication and she'd call me the next day with her decision.  She wanted to review my genetic testing.  

On Tuesday she called as promised but had something else in mind she wanted me to take.  I have to say I was disappointed at first because I'd done some reading the night before. For the first time I liked what I read and even the patient reviews were good.  Those can really scare you.  D does not like for me to read all of that.  I had to trust her judgement though.  Dr. L's notes mentioned that she was considering me trying this medication and she agreed it seemed to fit my needs based on her notes and genetic testing notes.  The good news was she had the first month in samples for me.  My husband went by and picked it up for me and the journey started.  

OMG !! I shouldn't have read the reviews on this one.  Maybe 1 out of every 10 was positive but 9 negative with a lot of side effects.  The next day I started tapering down on the Viibryd and started the new one.  Two days of 20 then up to 40.  Today was the last day of the Viibryd.  It hasn't been to bad.  Not sure the side effects I'm feeling are from coming off one or starting the new one.  This new one has only been on the market since the fall of 2013 so I'm a little nervous about that.  My new doctor likes that it helps with chronic pain.  Like Savella, Cymbalta, and Lyrica all of which I've tried.  Maybe, just maybe this is the one with the perfect balance.  Pain, depression and anxiety.  Supposed to cover all of this.  What a wonder drug if it does! 

Yesterday was my annual eye exam except it was a little later than annual.  I just can't seem to stay out of a doctor office so there are a couple I scheduled out during the year even though I was due to go at the end of the year.  I have to see the dermatologist next month.  

I've been telling my husband that I had a feeling my prescription for my glasses would change.  Seems every time I go in my eyes are worse.  She said around age 60 they will level out and should stop changing.  Not urgent.  I can wait a few months and just call in when I'm ready.  After my eyes had reached the point they were dilated enough she seemed to spend more time than usual looking and studying.  After she was done she talked to me about Fuchs Dystrophy.  The good news is that I come for my annual exam so we caught it right away.  I was kind of in a fog as she explained about the disease, causes, symptoms and worst case scenario.  

Wow, I sat in my car feeling like every time I go to the doctor they tell me something is wrong.  I think I will stop going.  I know that's not the answer but right now I'm still in the "why me" & "don't I have enough" stage.  I'll be past it soon.  I don't stay there long, but it's something I have to go through.  My way of dealing I guess.  

Fuchs Dystrophy, no matter how you look at it, has no good end.  It's a slowly progressing corneal dystrophy that usually effects both eyes and is more common in women.  It rarely effects vision until people reach their 50's and 60's.  I'm 7 months from knocking down that door!  Symptoms may include:

Blurred vision on awakening that may gradually clear up as the day goes on.
Other types of visual impairment, including distorted vision,  sensitivity to light, difficulty seeing at night and seeing halos around lights.
Eye discomfort..
Painful tiny blisters on the surface of cornea-caused by excess fluid within the cornea.
A cornea that is cloudy or hazy in appearance
Blindness-may occur late in the disorder.

Treatment involves in early stages topical hypertonic saline, the use of a hairdryer to dehydrate the precorneal tear film, and therapeutic soft contact lenses.  Definitive treatment however is surgical in form of corneal transplantation.  

At this point I stopped reading.  I don't want to know or understand anymore right now.  My progressive change in vision is not related to the Fuchs Dystrophy.

Gluten Free is going well.  I want to mention because there has been some talk in the news of GF being unhealthy if you eat too much of the same thing over and over and not getting in enough veggies.

Kind Bars....very good  GF

scrambled egg with veggies, GF shell with salsa
A couple things I discovered that are good.  The Kind bars are tasty.  I try to just have one occasionally.  They are expensive at some places like health food stores but Albertson's carry them.  They regular price is still cheaper than HFS. I recently caught a sale on them for .81 cents.  Thats why you see a box of them!  I never eat breakfast for breakfast.  Honestly I hardly like any breakfast foods.  I do however like scrambled eggs for supper.  I decided one night to jazz them up and put in a GF wrap add a little salsa and it was awesome.  

At least 2-3 nights I've been stuck on jasmine rice with saute bell peppers and onions, grilled chicken and broccoli all tossed together.  Guess what I add for some spice?  Yes your right, some salsa!

Jasmine rice, broccoli, bell pepper and onions 

Thats all I have folks.  I'm processing this new news and really can't wrap myself around anything else.  
Enjoy the rest of your week and I wish you peaceful and painless days.
God Bless,