Fibro Friday: Back Injections

A couple months ago I started physical therapy as part of my pain management.  Another part of the treatment has been having injections in my back of steroids.  I have had 2 injections now and thankfully they are working.  The first one started working pretty fast which I was happy about since I have heard you never know what might happen.  And the second one worked and the doctor said we could stop at 2 which is awesome.

It is pretty interesting when I am done with them and being released.  My legs, especially my right, become very numb and I can’t walk.  It was quite humorous I can imagine watching my mom and I the first time trying to get into my house.  The second time, ML went so that he could be with me and I think he was shocked at how much it affected my legs.  Good thing he is nice and strong and could get me into the house with no problem. 

I am glad to be done with them for now and so thankful that they have worked.  Woo hoo for pain going away!!!!

Fibro Friday: PT Test Results

Well, I had a few takers on my little experiment.  Thanks for all who tried it out.  Most people that tried it just ended up standing there and nothing happened.  For me, in less than 7 seconds I was over like a ton of bricks.  My physical therapist had to catch me.  And when I showed my family and my oldest, she just kept saying “do it again!”  She thought it was so funny.

So what does it all mean????  It has to do with your sense of balance and your core strength.  Now, I have always known that my equilibrium has been off and my core strength is horrible.  Interestingly, my therapist also asked about ear infections and sinus infections growing up and said that would affect my inner balance also.  And in these last few weeks I have actually been fighting a sinus infection.  So that’s what the test explains.  My therapist also said the more you do it the better you would become at it.  So guess I’ll have to keep practicing. 

Fibro Friday: Doctors in My Life

I have been thinking lately of all the doctors in my life and boy are there a lot of them. Most weeks I have at least 1 doctor appointment.  At least 1 or 2 weeks a month I have 3 doctors appointments in that week.  And I have needed to make appointment for my girls, but just haven’t had any time.  Besides my primary and girly-doctor, I see a Pain Specialist, Sleep Specialist, Rheumatologist, Neurologist, and Breast Surgeon.  Oh, and I just got cleared by my Endocrinologist and Dermatologist and I haven’t seen an Allergist in a while. 

Thank the Lord for great insurance and time to go to all these doctors.

Fibro Friday: In a Nut Shell

So here was my week in a nut shell….way to busy.  I am shocked that I am even standing this Friday night.  I had too many doctors appointments (thank goodness my appointment today was rescheduled by the doctor until next week), sort of an urgent ultrasound done to rule out a blood clot in my right calf (still  have to figure out why it’s swollen), grocery shopping, menu planning, running errands for ML, ML starting a new job, ML being gone 3 nights out of this week and the first week of me doing all drop off and pick up for the girls at school. 

I am so tired and wiped out.  And super thankful that tomorrow is Saturday and that this is a 3 day weekend.  I’m totally not looking forward to my body catching up with me.  But I am hoping there is some help on the horizon for me and my excessive daytime sleepiness.  And just thankful I made it through this week.

Fibro Friday: Court Update

Well, I got some great news…..the judge approved my court case.  That means I WOONNNN!!!!!!!  After an almost 2 year long, tiring battle, I finally have justice on my disability case. 

It was a little weird that I first got the call from social security that I had won and even now that I have received the judgment from the judge still haven’t heard from my lawyer.  I’m afraid that it’s because my case wasn’t 100% successful when you look at my case overall.  But for us, any win was a win.  The ideal was for the judge to find me disabled back to 2001.  Unfortunately, the judge only found me disabled back to 2009.  But like I said, for us a win is a win. 

It means a lot to hear someone of huge authority say that yes, I am disabled and that I cannot work in the working world.  It is now officially on paper that I can’t do it.  I do not have enough energy to function in the work place.  I am in too much pain to be able to work.  Overall, I just can’t do it. 

And the first thing I said was waaaa hooo and Praise the Lord!!!!!  It has been 10 years of suffering with FM, but honestly, I wouldn’t change a thing.  This is who God made me to be and I have accepted it.  The Lord is providing a way of easing our financial stress and it takes a huge load off of our chests.  It has been a long time in the making, but I know that it comes perfectly in the Lord’s timing. 

Fibro Friday: Fibro Funny

For some reason, my girls like to watch me go through my medicine bottles and pull out all of my night time meds.  The other night as I am pulling them all out, the girls are counting them as I go.  When I get to the end, I ask them how many are there.  And the big whapping answer is 10!  And then my Miss E. says “well that’s not that many!”

 

Not that many??? 10 pills just at bedtime?  (No wonder I have to pee so much in the middle of the night .)  And she thinks its “not that many.”  Silly girl, if she only knew this wasn’t normal. 

Fibro Friday: Court Update

Yes, I know it's Saturday, but I was too tired yesterday to update the blog. 

Thursday went very well.  The judge was very friendly and cordial.  He made me feel comfortable and I wasn’t barely nervous.  They had a occupational witness that the court brought in and he was very friendly and smiled which was nice too.  The hearing was supposed to last 30-45 minutes and we ended up being in there for an hour.  I was asked a lot of questions about medications I am on, past medications and their effectiveness, past job experiences, current daily life, current pain, etc. 

The judge was very throughout with his questions.  Then my lawyer was allowed to ask me some questions too.

When it was all said and done, the judge said that there was “significant evidence” that I was disabled.  The occupational expert testified that I would not be able to function in the working world.  We (my lawyer, hubby, and I)really believe that the judge would have ruled in my favor at that time if he could.

The only issue (which we knew going in) was that there is a specific date that they have to go back and prove disability on (has to do with 5 years after the last date I actually worked).  And the judge didn’t feel that there was enough evidence surrounding that date.  BUT he is giving my lawyer 30 days to come up with a brief outlining more supporting evidence for that date in question.  If we can get that date in question taken care of, my lawyer feels that we should be good. 

We went into the day wrapped in prayer and completely felt it.  We greatly appreciate all those who were praying.  It made such a difference.  We are continuing to pray that we can get the rest of the evidence that we need and that a doctor of mine will cooperate. 

All in all it was a great day and things couldn’t have turned out any better.  We are still fighting the battle, but the end it way closer than it ever has been.   The judge then asked the occupational expert some questions about my work ability back then and my work ability currently.

Fibro Friday: National Invisible Illness Awareness Week

National Invisible Illness Awareness Week

After reading another FM blogger, I just found out that September 13th - 19th is National Invisible Chronic Illness Awareness Week. In her blog, she answers if she would rather have a visible illness or a non visible illness.  And I think I agree with her...I would prefer a visible illness.  If you have a cast on a body or a major scar, crutches, a wheel chair, etc. people can see it.  They can understand a little more because it is made more real to them. 
Well not with FM, people question how "bad" you are really feeling.  They think that if you just take a different medication or exercise or eat differently or whatever that it will make things all better.  I have been on the strictest drug regimen that I have ever been on and I am still having bad days.  I am used to hiding most all my pain and emotions.  I am great at giving off a nice smile and facade. 
So here's to all my fellow people that suffer from an invisible illness.  You are not forgotten and I have your back.  I am right where you are at and right there along side you to support you.

Fibro Friday: Autoimmune?

Whenever I describe what FM is, I would always say that it is an autoimmune disorder.  Well, turns out it isn't.  I happen to be talking to my rhuematologist about it at my last appointment and she corrected me.  I was a little surprised so I decided to do a little of my own research.


All of the websites I googled said nothing about it being an autoimmune disorder (which I swear I saw something one time that did).  What they did say is that people are misunderstood and think that it is. 

 The National Fibromyalgia Association says that:

Fibromyalgia (pronounced fy-bro-my-AL-ja) is a common and complex chronic pain disorder that affects people physically, mentally and socially. Fibromyalgia is a syndrome rather than a disease. Unlike a disease, which is a medical condition with a specific cause or causes and recognizable signs and symptoms, a syndrome is a collection of signs, symptoms, and medical problems that tend to occur together but are not related to a specific, identifiable cause.



Fibromyalgia, which has also been referred to as fibromyalgia syndrome, fibromyositis and fibrositis, is characterized by chronic widespread pain, multiple tender points, abnormal pain processing, sleep disturbances, fatigue and often psychological distress. For those with severe symptoms, fibromyalgia can be extremely debilitating and interfere with basic daily activities.

So there ya have it, I'm just glad I learned this now (after 9 years) so that I can start sharing the correct information.

Fibro Friday: Breasts = A Mess

 Granulo what?

 Granulomatous mastitis is a rare condition in which the breast becomes inflamed, developing a mass of tissue which is sometimes mistaken for a cancerous growth.

Granulomatous mastitis has been taking over my life for that last 2 months.  It started with a lump in my right breast which my breast surgeon wanted to get an MRI, mammogram and ultrasound done on.  It started with a 9 am appointment at the radiology center and ended at 1 pm.  I ended up having all of the above done and then 3 biopsies.  Things were not looking good and they were convinced that it was cancer. 

After a long weekend of waiting, we had great news that it wasn't cancer.  It was a granulomatous mastitis infection.  I was advised to give it some time to see what happens and if it goes a way.  About two weeks later it started shrinking and became somewhat small. (Originally it was massive and when I say massive, I mean about the size of a grapefruit). 

And then 2 weeks ago, it hit.  Another massive infection in my left breast.  I talked to my breast surgeon over the weekend and she got me in to see her on that Monday.  She was surprised/shocked/baffled as to what was going on with my boobies.  She ordered another mammogram and ultrasound to be done (which I will have next week) and wanted me to see a Rheumatologist about treating the infection with steroids.

Luckily, I already have a Rheumatologist and I was able to see her the next day.  She was baffled at the infection and had never heard of it before.  Both of my doctors talked and came up with a plan of action which includes a dose of steroids and then see what happens.

The hard part is that doctors don't know how or why women get it.  It is a rare infection and they really don't know how to treat it.  Research shows that a long course of steroids can treat it, but no where does it say how long of the treatment or what does.  So my docs are just trying to see what works.

So far the steroids seem like they are working, the pain is gone and physcially I am feeling so much better.  It felt like the infection started taking over my whole body and started a major flare-up in the mean time.  For 4 days I was 100% non functional.  I could barely walk, my back was completely out, couldn't use my arms, and my neck and head were in extreme pain.  It wasn't until I had been on the steroids for a full day that I finally started getting some relief.  I am almost done with my steroid treatment, so we shall see what happens.  Unfortunately with this condition it can reoccur quite often.  Hopefully my doctors will get a good treatment going for me and this will become less of a problem in my life.  I want my regular boobies back :).

Fibro Friday: I *Heart* Laptops

I have always wanted a laptop for different reasons.  But recently I realized that it would really help with my FM.  It would give me more flexibility and cause less pain for me.  Our old computer desk would cause me a lot of pain if I had to work their for a long time.  My arm would be in tons of pain from the mouse.  And there were days I needed to do stuff on the computer but hurt to much to sit there or was just too tired. 

I have had a laptop for less than a week now and I LOVE IT!!!!  It gives me the flexibility of sitting on the couch or laying in bed to use the computer.  It's easier on my arms and hands and I'm able to be in a comfortable position while using it. 

I am just so thankful that we were financially able to afford one.  It is going to be my friend for a long time.  And now, I know I will be posting blogs more often since it is right at my fingertips.

Fibro Friday: Fibro Note

For all you FM sufferers (and friends and family), I am going to start putting a "Fibro Note" at the bottom of some of my posts.  I have a great mask of letting people think I am doing great and feeling fine, when inside I am falling apart.  People may see some of the activities I do with my family and wonder how the Fibro plays in.  So even though I may post something great we did, the Fibro Note will follow up with how my Fibro was affected or how I was feeling, etc.  It's just to give a personal insight as to how I really was feeling and to show that this is a real thing.

Fibro Note:  As I am typing this I am actually feeling good.  Just got up from a nap, so that is always a good thing :).

Fibro Friday: Serotonin

Have you ever heard of Serotonin Syndrome?  Well, neither had I.  My new psychiatrist nurse practitioner (didn't even know that had those, but she seems to be really good), noticed that a lot of my medications had serotonin in them.  I am not talking just about anti-depressants, but some of my sleeping and pain meds have serotonin also.  My new psych was shocked that no other doctor or pharmacy had told me about it or to watch for it.  

As she read through the symptoms of what it can cause, I noticed that I had some of the symptoms.  Now these symptoms could also be attributed to something else, but it was worth noting them.  If not watched, Serotonin Syndrome can turn very severe or even fatal.  So my psych lowered one medication to reduce some of the serotonin and to also be cautious in case I start any new meds that might also have serotonin in them.  You might check your meds just to see exactly what's in them, really makes you think.

Symptoms can include:

• Agitation or restlessness
• Confusion
• Rapid heart rate
• Dilated pupils
• Loss of muscle coordination or twitching muscles
• Heavy sweating
• Diarrhea
• Headache
• Shivering
• Goose bumps

Fibro Friday: Earthquake?

On Easter Sunday the most amazing thing happened here in Arizona, we had an earthquake.  Or should I say we felt the earthquake that was centered in Mexico all the way in Arizona.  It was amazing and the reason why I am putting it on a Fibro Friday is because I thought it was my Fibro and not an earthquake.  Silly I know, but we didn't realize what was happening until at least 10 seconds into it.  

I had been bending over sweeping and picking up a few items.  And when I stood up and got myself centered I started swaying and became really dizzy and nauseous.  I thought I had just been bending over too long or had stressed my body too much.  And then I realized that everyone else was feeling it too.  

Wow, it was such a crazy feeling.  Last time I felt it I was probably 5 or 6.  I don't really remember the crazy feeling just that everything was shaking.  And thank the Lord that no one was injured or we had any damage.

Fibro Friday: Allergies

Wow, so I haven't done a Fibro Friday in forever.  It just seems as though you go from one flare-up to another.  And I am in a big one now, and just feel horrible (on Tuesday I didn't get out of bed until 1:15 pm).  There are times where I feel like I am getting sick and then boom, a flare-up starts.  Lately, I have been wondering if I am getting sick or is it allergies.  

I have never officially been diagnosed with allergies... until today!  Last week we were at the allergist for our oldest.  And by asking him a few questions, it really made me wonder if all these years I have also been suffering from allergies.  I went to the family doc today and he confirmed it so far.. YES I am suffering from allergies.  And YES allergies and infections can bring on a flare-up.  (I always knew that infections could, but just never thought about allergies.)

The doc gave me some meds to start taking to see if I can get it under control, but I am definitely going to follow up with the allergist.  Just think, it's been 9 years since I was diagnosed at I have probably had allergies all this time and never knew it!

Fibro Friday: Blank

Would you all like to know the real reason as to why I haven't been blogging lately??? (Well, one of the reasons.)  Memory...or lack of it.  I think of a really cute post or something funny to write and then I forget.  By the time I make it to my computer, the thoughts are gone.  

As an example, I was just writing a post for another day.  In the middle of writing it, another post came to mind and now it's GONE!!!!  Why didn't I write it down???  I cannot remember what I wanted to write about next (hence, prompting this post)

One night, I wrote the cutest poem (well, at least I thought it was cute) about my little A. and the joys of having a toddler who only wants mommy.  I was way to tired to get up and write it down at that moment, and now I am sorry about that.  I went over it several times in my head so that in the morning I could remember it and guess what...GONE! 

It is so stinkin' fustrating to have these great thoughts and the next instant they are gone.  That is part of the Fibro Fog.  I have learned to live with it and some days are better than others, but it makes me feel like I am becoming senile.  It is an aspect of FM that not a lot of people understand.  I can be looking at a table and say "ok, it is square, has legs and chairs" but cannot remember the word "table."

So friends, please bare with me, I am not going crazy or weird, it's just my memory!

Senile:

adj.

1. Of, relating to, or characteristic of old age.
2. Relating to or exhibiting memory loss or mental impairment associated with aging.
3. Geology. Worn away nearly to the base level, as at the end of an erosion cycle.

Fibro Friday: Christmas with FM

Ok, I know it's not Friday, but here we go...  Christmas with FM...what else is there to say???  It sucks!!!  (excuse my french)  For that matter, any Holiday, birthday, fun events, etc. can be thrown in there too.

I will be completely honest and say that the month of December was really hard on me.  I am taking note to see if it is the weather change (boy, I could never survive somewhere that snows).  Or maybe it just was a bad month.  There was a lot of pain, little/no energy, and a lot of depression.  I know people are hesitant or scared to talk about the depression, but I am going to venture out and talk about it.

Depression is a big side effect of FM.  It's a huge cycle.  You get depressed because you don't feel good and can't do anything, then because you are depressed you don't feel like doing anything, then you get more depressed because you don't feel good, and it goes on and on.  A lot of FM patients are on anti-depressants and you should not feel ashamed at all. 

It probably was a culmination of not feeling good, our financial situation, life, etc.  But I feel like I am out of it now, which is soooo good!  It helps that I have a husband and family that is there to help me and that I can be honest with and say "hey, I am not doing good, I need a little extra support."

If you are suffering from any depression, please don't be afraid to seek out help.  Whether it be family, a friend, or a professional, get some type of help.  You do not need to be suffering or dealing with this on your own.

Here's to Depression Free Days!

Fibro Friday: Oops I Did It Again!

One of the hardest things with FM for me is to pace myself.  You feel bad for so many days or weeks, that as soon as you get feeling good you over do it.  You say to yourself "well while I have the energy, I mindswell get enough done as I can."  And then before you know it, you are back in a flare-up. 

Most of the time I am pretty good about pacing myself.  However, ML has been home for over a month with a medical condition and I am just in this mode of I need to get it all done.  Which, of course, now I am paying for.  So I am retraining my brain and making myself pace myself.  I have been turning down friends and family for activities so that I can make myself rest.  I am barely doing anything during the day so that I can build up the strength again.  Especially with the holidays coming, I really need to do this now or I will be SOL when they arrive.

So your goal for the day or week or month is to pace yourself.  It doesn't all need to be done NOW.  Things can wait, save your energy for your kids and your hubby!  Good luck!!!

Fibro Friday: Physical Therapy Update

I have been doing physical therapy now for about a month now, going 2 times a week.  My evaluation of it at this time is that it is TOTALLY working.  When my physical therapist started working on me, all she could say when she tested my muscle was "Oye Beckey."  My muscles were so extremely tight, on a scale of 1-10 I probably started out at a 9-10.  But she has slowly been stretching them and I can totally feel a difference.


Now I still have had a pain flare-up, but the stretching and exercises helped me get through it.  My hope is that it will help lessen the pain flare-ups and reduce the time of a flare-up.  And for over all life, it is helping me be a more flexible in everyday life.  I can stand longer, play with my girls more, and move better.  Now it hasn't taken away my FM, just made life more bearable with it.


Thank God we have great insurance and I have no co-pays.  Otherwise, I wouldn't be able to even go.  So if you are suffering from FM, talk to your doctor about the option of physical therapy.  It may be good for you too!

Dead Battery

What is your battery charge?  Imagine that most people go to bed at night, get a full nights sleep and wake up with their batter charge at 75% to 100%.  For someone with FM (and I am using me as the example), I am lucky if I wake up with my battery at 50% after a full nights sleep.  On the bad days, it is 25% or less.  Now imagine trying to function all day with your battery starting out so low...it can't happen. 

This is one of the hardest things to explain to other people.  When I say I am tired, people just don't understand how sever it really is.  I have started using the battery with ML so he knows exactly where I am at and when I need his help.  I will tell ML that my battery is on low or flashing red, etc.  There are some days where I can go a little longer with my battery low or if it is flashing red that means I need to lay down immediately before I collapse (literally).  It has become a good visual to let him know where I am at and to help explain to others what people with FM go through.