20+ years of pain

I dont know if its because Im getting older, or if Im tired of social media, but everyday I see people who have no real health issues complain about pain. So this post is a vent of sorts.

I was diagnosed with lupus in 95. Prior to that, I had a diagnoses of juvenile arthritis. Ive ALWAYS had joint and muscle pain.

Since my diagnosis, Ive had a number of flares of my lupus. During those and subsequently even while NOT flaring, I have joint and muscle pain.

This type of joint and muscle pain cannot be ‘removed’ by pain killers. My body literally gets to the point to feeling like if I even bend a small bit, I will break.

Some days, this pain is excruciating. But, I usually still get up, out of bed, shower, and get ready for my day.

The diagnosis of fibromyalgia came a short time after my lupus diagnosis.

I described that pain and if every nerve in my body is on fire – has needles poking it. Even the clothing I wear feels like its rubbing my skin off.

Ive also had a back injury. Two slipped discs, one ruptured disc, and multiple compression fractures. After months of physical therapy, I required surgery. Several days a month, my back goes into spasm. Despite this pain, I do what I gotta do.

Both of these illnesses qualify me for disability. I have applied for disability in the past. However, my determination to be a productive member of society, coupled with the fact that the disability payments wouldnt pay my bills, has made me aware that I need to work full time.

So yes, despite the fact that my body feels like this pretty much everyday, I get up, shower, and go to work.

I dont want an award for this. Im just tired of seeing people post how much pain they are in and use it as an excuse to not be living to their full potential.

 

 

Just SHUDDUP about lupus

There are apparently some people in this world who do not want or care to be educated about major illnesses. And while they dont say ‘shut up about lupus’ they DO like to point out that I mention it alot……

So what if you are tired of hearing about lupus, FM, or RA.

• Do you think I want to wake up every morning feeling like every joint and bone in my body feels like tiny glass shards?
• Do you think I want to wake up everyday not remembering things you probably take for granted?
• Do you think my feet like feeling like they are always walking on marbles?
• Do you think its FUN to be in pain all the time?
• Do you think I want to be tired just from getting out of bed and getting a shower?

Newsflash: It is not. Dont you think that if ANYONE is tired of lupus, it would be and those who help me out on a day to day basis?

And Im not going to stop posting information about lupus OR how Im doing in my various therapies just to make you happy. Some of my friends are thankful for my honesty and candor. Some of my friends are thankful because they recently found out someone they love has lupus.

And if you happen to be my friend on facebook, or my follower on twitter, or even in my circles on google+ and think I post about my illness too much, you can always unfriend, unfollow, or uncircle. And yea, it might hurt my feelings when I see youre no longer in my stream, but it hurts alot worse to see no compassion.

And…..when the day comes that Im finally back in remission, I WILL remember exactly who my REAL friends were. And everyone else, can suck on my big toe.

 

What Nerve!

Last weekend I ‘developed’ a new issue. Last Saturday morning my left arm started getting a pins and needles sensation and whenever I lifted my arm higher than stomach level, it felt like it was on fire. I have since, been unable to grasp anything in my hand.

At first I thought it might have something to do with my steroid shots (both shots were in my left arm). I mentioned this to my doctor, who seemed to agree with me. That is, until I called his office still complaining about the loss of sensation (well, except for the horrible pins and needles and burning).

So today I had my ‘normal’ labwork done as well as an NCV (carpal tunnel test) and an EMG.

First, the good news, that well, isnt all that good…..My WBC went down 10000. My doctors expected it to drop more, but I still have another week until my next treatment (that is, if I still decide to get it).

I know I dont have carpal tunnel. I guess that is good news…..sorta

What I WAS told is that I have multiple mononeuropathy. This is nerve damage to a nerve group.

The doctor said Mononeuropathy may be disabling and painful. If the cause of the nerve dysfunction can be found and successfully treated, there is a possibility of full recovery. The extent of disability varies from no disability to partial or complete loss of movement or sensation. Nerve pain may be quite uncomfortable and may last for a long time.

Uh, ya think?

What they dont know for sure is if the immonu-suppressent caused this to occur or if my lupus caused this to occur. Both of these are factors.

The scariest part is knowing that lupus (SLE) can attack any part of my body, and is now making time in yet another part.

 

Anger, stress, denial = lupus flare :(

As some of my readers know, I suffer from lupus and fibromyalgia. I was officially diagnosed in 1995 after several mis-diagnoses, including being diagnosed with juvenile arthritis.

Ive spent the last 16 years educating myself, changing habits that encourage symptoms, and educating others. Ive also spent the last 16 years playing flare / remission / flare / remission. Ive been pretty ‘lucky’, in that Ive been able to go several years at a time in remission before hitting a flare up period.

Last week I read this article ( http://www.prohealth.com/library/showarticle.cfm?libid=16638 ) that, if Im correct in understanding, theres a link between stress and symptoms.

When I attended my lupus and FM support group, almost all of our stories seemed similar. We all sort of agree that stress ‘attacks’ us and makes our lupus flare. Not that there isnt other things that make our symptoms worse, but stress is definitely a factor in the length of a flare.

Ive had a rough couple of weeks. Truly a high stress period. I could feel my body aching more and more. It got harder and harder to convince myself to get out of bed – and then…..I started losing weight, having really bad back pains, my Reynauds got worse. The list goes on….and even tho I did get lab work done, I dont need any doctor to tell me that I am, indeed, flaring up.

Part of me doesnt even want to see the actual doctor (esp my kidney doctor) because I know what hes going to say. I dont want to make weekly visits, I dont want to have to take time away from my job and I DONT want to feel this horrible.

Last year I participated in a clinical trial during one of my worse flares (my kidneys were failing) and I STILL WENT TO WORK EVERY DAY! Yes, I probably COULD have quit my job and applied for disability. But, not working and being productive would have made me depressed and stressed, which would have made my symptoms worse….

I have people in my own family who could really care less about how I feel, but expect me to feel pity on them for their minor aches and pains. They want to justify their laziness when, in all reality, if anyone had a reason to make excuses, it would be me.

It makes me SO angry that I fight thru my symptoms and am still a productive member of society-paying my own way, when other people just take advantage of the system.

 

But….you dont look sick

First, please take a moment to read the “Spoon Theory”
It is an amazing explanation of lupus. http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

This is a pretty personal blog entry. Those of you who know me, may not be aware of all the struggles someone diagnosed with lupus deals with. Some of you may have even uttered the statements listed below to me…maybe you were not aware of how hurtful they are-this is just an explanation.

Some of you know that I am a “go-getter” and “to the hilt” organized. To many, these traits do not go with someone you think has lupus.

People with a diagnosis of an auto-immune disease go thru many different stages before they get to acceptance. Most of this process includes a “looking at self” aspect. We all get thru this process at our speed, and I might add, with our own attitudes.

Most of the looking at self process is looking at where your priorities are and eliminating or changing what isnt a priority. This priority list changes depending on energy levels….And there is no doing “more” because if you try to do too much, you will pay for it days on end.

Since people who do not have lupus cannot begin to fathom how limiting it CAN be, we cannot blame them for not knowing what they are saying hurts.

So here are some statements Ive heard and a couple comments

-What do you mean, you are tired? You havent done anything today.
For those with lupus/FM, we DO get tired, just doing nothing. You can wake up and just HURT. Every bone, every joint, every muscle. Its just the way it is. We HAVE to accept this.

-You just had a cold, why are you still sick THREE WEEKS later?
Our bodies just have a way of destroying anything…even stuff that makes us better. So while your body is fighting your cold-helping YOU get better, my bodys immune system attacks even the good cells-keeping ME sick.

-What do you mean your cold, injury caused a flare?
See above explanation.

-What in the world is fibromyalgia? Ive NEVER heard of that!
Simple explanation- aches and pains everywhere, anywhere, at any time for any length of time. Your body just HURTS.

-What do you mean you have insomnia? I thought you said you were tired!
Well, I cant say that I understand this myself…all I know is that there are times when I lay in bed all night long, tossing and turning – never have slept before the alarm goes off.

-What? Youre not going to come to _______ to see us?
Sorry guys. If I cant come, its because the total drive time involved takes a toll on my energy levels and soreness. Did you really want me to come and hurt all night – wanting to lay down?

-I know someone who has lupus and they are hardly ever sick. Whats wrong with you?
Everyone who has lupus is different. The disease may manifest itself as a rash, arthritic pain, cramping, UV sensitivity… More serious cases of lupus even include organ failure-mostly kidneys. Also note, not all people with lupus have symptoms during periods of remission.

Im sure I could list more….but I think you get the drift.

I was diagnosed after the birth of my son (now 13) and an experience with a pulmonary embolism that Id rather forget (rather, I have no recollection of). Ive had a mix of flares and remissions during that time, recently going 6 years almost symptom free.

I have learned that I do not have to make excuses for how I feel. I choose to educate those who are either misinformed or just dont understand. Even after 13 years, there are things I do not fully know the WHY or HOW.

And yes, there are days when I feel up to doing something -like cleaning – its just more enjoyable to surf the internet or jam out with Guitar Hero!

Cant be all bad because, According to GH, I rock!
And…..Im still the GH queen in this house…but I gotta practice because Matts catching up!

For those of you still waiting on my Lost theory – Part One will be posted Monday, Part Two Tuesday, Part Three Saturday. I promise you will want to go re watch it from the beginning to see if Im spot-on!