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. 

PT Test

Yesterday I started PT (physical therapy) for the 2nd time (different doctor, new insurance).  It’s to deal with my major back and leg pain I have going on and my  newly diagnosed bulging disk.  Just by the little stretching my PT therapist did with me, I feel an improvement already.  But what I was so interested in was this little test he gave me. 

As soon as I came home, I started asking everyone to try it to see what their response was to it.  So…I want you to try it.  Here’s what you do -   BEWARE DO THIS NEXT TO SOMEONE OR NEXT TO YOUR BED/COUCH…I AM NOT RESPONSIBLE FOR ANY INJURIES INCURRED WHILE TRYING THIS OUT---YOU ARE FOREWARNED!!!!

1.  Put your feet together and stand straight up

2.  Cross your arms over your shoulders and put your elbows up a little

3.  Get ready to start counting by seconds

4.  Clothes your eyes

 

So what happened?  Anything?  Did you fall over?  How fast did you fall over?  How long did it take for you to fall over?  Or were you able to just stand there with no problem?  I want to know how other people responded.  The only problem is I forgot to ask what all it means LOL.  I think it has to do with my equilibrium, which I have always known was off, but I will ask when I go next week.  But PLEASE let me know your results.  I am just SO curious.

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.

Heat, Heat, Go Away

Heat, heat, please go away, your killing my energy and wiping me out. 

I love Arizona and really don't think I could stand the weather anywhere else.  And the heat this summer has actually been pretty mild, but with Fibro it really doesn't matter.  And it doesn't matter if you stay inside or out.  I am still wiped out.  Now when I say wiped, know one can really understand what that really means.  I mean I'm talking not being able to get out of bed until 9 or 10 every morning (being full blown asleep until this time).  Just having short bursts of energy to get things done, well basically having no energy to get anything done. 

I just have to thank the Lord that my girls have become so well adjusted to my illness.  They play, entertain, watch  tv, make their own breakfast, etc. all on their own.  I try to look at it positively and think that I am just raising independent daughters.

Onederland

It has finally happened.  It’s been 10 years since I’ve been there.  But I have finally made it back to Onederland.  Yes, I have done it….I am back in the 100’s for my weight!!!!!!   Waaaaa hoooooo and yay for me!!!!!   I am totally ecstatic.  It has been a lot of work and a lot of commitment, but I have been doing it.
So far to date I have lost 28.8 pounds over 10% of my weight loss goal, I am down about a size and a half in my pants, lost over 2 inches (haven’t measured in a while) in my waist.  I AM DOING IT!!!!!!   I have a new resolve from the last time I did WW online.  It has been a lifetime battle and I want it over.  I am 100% committed this time to getting it all off and keeping it off. 

So stay tuned………

Health Phobia

What am I gonna do with My Miss E?  She is my oldest, the one who has had probably the most medical issues out of all 3 girls (which really  hasn’t been a lot).  She is the only one who has had to have surgery (a pretty traumatic one at age 2 1/2) and she has all the allergies.  Besides her peanut and tree nut allergies, we just found out she is allergic to most trees, weeds, grasses,etc.  She will be dealing with allergies from Spring to Fall.

And I think all of this has led to her being completely freaked out and scared of any little pain that she experiences.  Any pain she gets sends her into a panic.  She wants to know if me or ML have ever experienced a pain like it.  What happened to us when we had that pain?  She wants to know what could be causing the pain?  Does she need to go to the hospital/doctor?   When will the pain go away? 

She gets short of breath and starts to cry and becomes extremely upset.  We just don’t know why she is like this.  She was young at the age of surgery and probably really doesn’t remember it, but somewhere along the way it has made an impression in her brain.  It has traumatized her forever. 

She is by definition a Hypochondriac.   I googled it and the definition completely matched her even at this young age of 9.  Not sure how we are going to handle this.  I have talked with her Pediatrician and we are going to just monitor it for right now.  But if it starts to get worse, we will need to consult a Psychiatrist.  

So right now we are just going to be gentle with her and love her through it.  This is an anxiety disorder, which does run in our family, so we do need to keep an eye on it.  Let's hope this is just a phase and she can just naturally grow out of it.

Random Thought

Everyone knows that cats sleep all day.  Now I am totally a cat person.  Always have been, always will be.  But why is it that when I go to take a nap they have to come over to me and decide to take a bath on top of me?  Come on, you get to sleep uninterrupted, let me get in my cat nap too.

Author Am I?

So I have really been thinking…I want to write a book.  The book would be about mental illness in the Christian community (which is totally needed, I’ll probably write a post on this another day).  I have personal experience from myself extending down to several family members.

Here’s my dilemma… I don’t feel like I have the educational or mental background to write it.  This is mainly due to the Fibro Fog.  Yes, I have graduated from college, with a Psychology degree to boot.  But can I recall any of it??? NO!!!  Yes, I  have been a stay-at-home mom for almost 10 years so I haven’t had to use my brain like that.

But with the Fibro Fog, I can’t even remember simple words like table, chair, book, etc.  So what is a girl with Fibro to do???  Well, I guess I better still try.  My only reason for writing the book is to help people.  There is such a huge need for help and understanding for people with mental illness (from depression to bipolar).  This goes for the regular community down to the Christian community to which I am really involved. 

So I guess I will start writing.  Who knows how long it will take.  Years I am guessing, but I’ll see how the Lord leads with it and see what happens.  Wish me luck and good memory recall!

Third Nipple

Well, my third nipple (as my daughter calls it) is back, it’s actually another lesion.  I went to my Rheumatologist to finally start treament for my (what they are now calling) breast disease on Tuesday and it wasn’t there.  And as of Tuesday night it was already appearing.  I already had an appointment scheduled Wednesday with my breast surgeon so I had her check it out and she wanted me to go see my rheuma (my new shortened word) right away since I had just started this heavy treatment (more on that later).  So I was able to get back into him on Friday and his first comment was “yea, that’s what granulomatous is!”
But my biggest concern in going back to him was the fact that he originally couldn’t treat if I had any active lesions.  And since we had just started treatment and now one was starting I was scared we would have to stop treatment.  Thank the Lord I don’t have to.  He said that at least when I started it (for one dose) that I had no lesions and as of now it hasn’t “broken open” so we are good.  And if we had to stop treatment for every time I got one, we would never be able to treat me. 
Treatment right now will consist of a low dose of Prednisone/steroids for six weeks until the main drug kicks in. (Though I am on a heavy dose to try and thwart the lesion but only for 6 days.)  And the other drug, surprisingly, it’s main use is for people who have received kidney transplants and it is used so there bodies don’t reject the kidney. 
I don’t know how long I will have to be on that med.  I did ask the doctor and he said it may be the rest of my life.  So now along with the fibro I now have this stupid breast disease.  As I have said before, I just want my boobies back. 
Oh well, I know things could be so much worse and the Lord will only give me as much as I am able to handle. 

Big Day

Today is a big, important day for me, my family, and my Fibromyalgia.  It’s a day to go prove myself in court and hope and pray that they find in favor of me.  Find in favor that I am disabled enough not to be able to work.
I already know deep down that I am disabled and that I am not able to work and I really don’t need a judge to give me the approval for me to finally believe it.  What I do need is for a judge to agree to let me get paid for it. 
I/me and ML are going into this day wrapped in prayer.  We fully believe that God is in complete control.  We trust that whatever the outcome is that He has orchestrated it.  We have prayed that it would be God’s will that my disability be approved. We have prayed that God have favor on us and provide this for our family.  We have prayed that we receive an immediate answer and do not have to wait for the judge to make a decision. 
I feel calm and not nervous.  I do want to get it over with, but I am ready and at peace.
So thank you to all who are praying.  The prayers are so greatly appreciated.  Here’s hoping to a great, successful day tomorrow. 

I'm Famous...

...well, my boobies are :).  As posted before, I have this rare breast infection going on.  And yes, it is still going on.  So anyhow, this rare disease has completely stumped my doctors and they are having a hard time treating it.  My breast surgeon was scheduled for a medical conference and they ended up changing it to a Granulomatous Mastitis conference (which is what I am suffering from) and it was there that I found fame.................My breasts were presented at the conference (no, not in person).  I feel so honored (yes, I am a dork). 

Actually, this is very cool in the fact that I had I-don't-know-how-many doctors talking about my case.  They all conferred as to what steps should be taken, what steps shouldn't be taken (like surgery), and what medicine they should try to help me out. I mean, I figure it can't get any better than that, right?

Even though my doctors don't know why I have this rare infection/disease or how I got it, they are at least committed to helping me through and finding something to help heal/cure this pain in my butt.  I really can't stand to have any more biopsies (of course, I will if I have to *pouting*), but I would really like this to be gone.  I would like my breasts back (and so would ML :).  I am tired of them being sore, having holes in them, and looking like they got beat up in a fight. 

But as I always say...It could always be worse!!!!

Suck It Up

So I admit it, I have been in a "fibro funk".  It's been physically and emotionally, but I think I am finally pulling out of it.  I had been going through so much pain there that it then starts wearing on the emotions.  And then IT happened...we were at a church bbq and I seemed to go downhill from there. 

I was talking casually with a friend and her husband inquired why we hadn't been in church for a while (well, like forever).  I started explaining that I hadn't been doing good and then he said it.  He told me I just needed to "suck it up."  It caught me so off guard that I pretty much just ignored it and kept on talking with his wife. 

After we left and I began processing it all, I really started getting upset.  Yes, over the years that have been insensitive comments and such, but none this rude.  I know this guy is a macho, don't be a sissy kinda guy and I can definitely fault him for being ignorant.  But it still affected me. 

Like I said, I am doing better know.  I had some great friends come to my defense and offer to beat a few people up (thanks friends, it meant the world to me).  It also reaffirmed that some how I need to continue educating people on what FM is, but some how not shove it down their throats.  It's also important to educate people that invisible illnesses do occur and you can never judge a book by it's cover.

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.

Revelation

I had a revelation or an epiphany:  

I HAVE A CHRONIC PAIN DISORDER. 

Once I found out that I didn't have an autoimmune disorder, I started looking at what I actually have.  And that is a chronic pain disorder.  Yes, I am pretty much in pain all the time.  It's totally true.  I don't know why it took me so long to realize this.  Maybe I just thought that it was an autoimmune thing that happens to have accompanying pain.  But it isn't.  It's a disorder of pain, that happens to come with all the other crap I deal with.

I know this may sounds silly, but this really hit me.  It really opened my eyes and made me realize that yes, I am in pain pretty much 24/7.  Whether it be from my head, to an arm, to a leg, or to my back, I am in pain.  Yes, it does fluctuate between mild to severe, but it's there.

I feel that I now have such a greater knowledge of my own illness and I feel enlightened.

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.

Rare Am I

So many things that happen to me medically seem to be rare or unexplainable things.  I guess I'd rather be rare than ordinary, but at times it can be so frustrating.  And I'd rather not be as rare as a friend of mine.  Poor thing is always having the most rare and life threatening things happening to her.  (The Lord has given her so much strength to get her through.)

Of course with my Fibro Fog I can't remember all the rare things that have happened to me, but here are a few:

• I can't eat fruit and doctors have no explanation as to why.
• My epidurals always stop working at some point during a delivery and the doctors have no explanation.  They just say this usually doesn't happen.
• I have been battling a rare breast infection (only 1% of biopsies are this infection).  There is not a lot of information out their for the doctors to know how or why women get it or even on how to treat it.

So Rare Am I!  I accept it and live with it.  How rare are you?

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 :).

Dear Blog

Dear Blog,

Oh how I have missed you.  This summer has been crazy with tons of traveling and re-cooperating.   We just got home from our last trip of the year, S. Africa.  I hope to update you soon with new blogs about our life.  Thanks for being here.

Love, 

Fibromommyx3

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 :).