Its a New Year – duhh

…..Deep breath……Yea, its been since July since Ive blogged – buuuuuuut

One of my New Years Resolutions was to resurrect this blog with at least one new post a week. For starters, I do have alot to say, but since I am left without a physical voice at least half the year, this is where Im forced to ‘say’ it.

So, here are my scattered thoughts on wrapping up 2014 and looking forward to 2015.

ACCOMPLISHMENTS?

Anyway, as of today (January 4, 2015) I am 669 days smoke free because I switched to ecigs. My health has somewhat improved….I havent had to use the rescue inhaler for quite some time.

Obviously vaping isnt going to improve actual chronic conditions….and the act of quitting combustable tobacco takes time to actually show improvement – and there is reducing your mg of nicotine (Ive gone from 24 mg to 0-3 mg).

Ive increased how much water I drink and only drink a cup of hot green tea a day (I used to be able to down a pot of coffee plus drink sodas all day).

I also spent my Christmas week completely news free. Granted that wasnt exactly a New Years resolution but it was something I needed to do for my own sanity. I believe that may turn into a tradition -depending on the severity of what is going on in the world, of course.

I cleaned up alot of my social media feeds. This covers removing people I dont speak to, inactive accounts, and just otherwise negative folks. I have also kept my exposure to these social networks to a minimum, which actually has made my life alot more peaceful.

REALIZATIONS

2015 was also the year I found out who my real friends are and just how fake others have been.

See-when you have a chronic illness, and your health deteriorates, and you cant travel or even get out of your house – you dont expect your friends to ‘trade’ you in for another person who can do those things. Real friends just dont abandon you like that…..they just dont leave you hang. And they certainly dont just stop talking to you. So goodbye to those people.

CHANGE?

At the end of last year, I asked people to send me suggestions of things that I might have missed…..(music videos, youtube channels, podcasts, Netflix shows/movies) So, everyday in 2015, I will be stepping outside my ‘comfort zone’ to watch things I would have otherwise missed. I also suggest you do the same. Its already been eye opening as to what I have missed simply because it wasnt in my radar.

This is also going to be a year of personal change. Because of my illness, Ive been very inactive this year. I wont go into the details in this post as to what has been going on, but its been difficult to go more than 10 minutes from my home without huge issues. I will be setting a weekly goal to ‘move my body’ so I get in some resemblence of normalcy back in my life.

A continuing goal of mine is to reduce the clutter. This includes clothing you wont ever wear again, papers you wont need, and other belongings that you just dont love/need/want. I personally donate what I can, recycling what I can and tossing the rest.

LETS WRAP THIS UP NOW, SHALL WE?

I have other goals for this year, but those will be mentioned in other posts where they will make a little more sense. But thanks for reading and I hope you stick around for 2015!

 

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.

 

 

Why I am happy the ACA was upheld

Wow, its been over a month since Ive blogged. Ive been really busy, but I will save THAT post for another time…..Today I want to talk about something else…..The SCOTUS and the ACA and how it was upheld this morning.

I am not going to act like this entire bill is wonderful….because there are parts I dont like. It IS a start.

I think I have to say that when the word got out that the Supreme Court upheld the ACA I felt like Erin did: http://queenofspainblog.com/2012/06/28/tears-and-thanks-to-the-supreme-court-for-the-affordable-care-act-ruling/

Erin is like me in many ways. We both have LUPUS. It is a chronic debilitating disease that can attack any organ in your body. Without treatment, many of us would certainly be worse off that what we are.

Today, I have seen posts online that have truly REPULSED me. On days like this, when posts claim that people who are happy about this are lazy, wont work, want things handed to them…..etc etc I get seriously sick to my stomach.

Ive  worked since I was 15. I have paid my share into whatever system should cover people when we need extra help.

If you are truly against paying for other peoples healthcare, maybe you should stop paying taxes. Maybe you should stop paying insurance premiums. And, perhaps maybe you should stop going to hospitals. Because you are paying for other people who dont pay into the system when you pay taxes, pay your insurance premiums and pay your hospital bills.

You wanna know why your tylenol costs more than 5 cents? Well, its because most poor people dont pay their medical bills. They pass the costs of that along to those who DO pay their bills.

So…..shut the hell up about what you pay for and what you dont want to pay for.

I hate to delete half my facebook friends because they post ridiculousness all over the place about how everyone is so entitled….blah blah blah.

You ALL look like selfish jerks.

Yes. ALL of you.

Deal with going to work EVERY DAY when just getting out of bed and getting a shower feels like death.

Deal with doing EVERYTHING right and then BAM being diagnosed with a debilitating disease and going absolutely broke because of that illness AND your then husband walking out on you and your kids. But you still go to work.

Deal with losing EVERYTHING because you paid all your medical bills off and then you get SLAMMED with another flare of said illness.

Try getting insurance when you have an illness like lupus. And IF you can get a policy, see how much that costs.

Try applying for SSI/Disability and waiting for a decision and then being turned down more than once. See how much paperwork is involved in that process.

 

For those people who claim some of us dont need the specialists we do…..yall can just delete yourselves.

Try this. Go to google. Look up how much some of the treatments I HAVE to get cost.

• * Albumin infusions
• * Remicade infusions
• * Benlysta infusions.

And in some cases, they arent even covered at all. It is only thru the tremendous work of social workers at the “Big Pharma” companies that I get these treatments at no cost to me. Guess what? Someone is paying for them. And no, I dont feel ONE BIT bad that someone somewhere IS.

In one case, one infusion treatment costs a MINIMUM of $3700.

That doesnt even include the medications Ive been put on…..or the medications I could be put on.

Im not asking for a pity party. I dont want your sympathy.

I dont even want your money….that obviously is way more important that helping a single mother stay healthy so she can remain a PRODUCTIVE member of society.

Im guessing from some of your posts, you would rather us unhealthy people be placed on some island somewhere to die or something….I dunno.

But heres the rub: If we are not healthy, we cannot work. If we cant work, we lose our homes, our vehicles, our children. Maybe some of us will have no choice but to go on welfare…..which Im guessing is worse than having some of your precious money help us out medically.

I guess losing everything due to an illness is all my fault tho. Cuz ya know…..screw us.

And for all the politicians out there boohooing and getting your panties in a bunch about this……guess what? I wont be voting for you. Especially when your posting about how youre gonna repeal this if elected. I WILL be working for your opposition.

 

 

More lessons learned

Consider me one of those people who have to learn things the VERY hard way. Its official. I am a doofus. Yea, that might sound a little harsh….but its the truth. I spent the majority of my life thinking I could do what I wanted, not listening to the doctors, and be completely fine.

Sure, it didnt start out like that….When I was first diagnosed with lupus in 95, I listened to what they told me to do. I changed my diet, changed my lifestyle, etc. But as I got better and went into remission, I fell back on those old habits.

Since the initial remission, Ive had several additional flares and subsequent remissions. And, while I would like to say that I changed what I had to each time, that would not be the truth.

I actually went a full homeopathic route until this last flare. I am VERY VERY VERY lucky to not have killed myself not getting the correct treatment. And to be honest, I could have actually lost my kidney.

I am still kicking myself for that stupidity.

Ive been in this most recent flare since November. Yes, November.

My current treatment has been at a standstill due to other health issues that have arisen….which, I could just kick myself for, since that is also connected with my unwillingness to do what Im supposed to be doing.

Since my last post, Ive been on rescue inhalers, inhaled steroids, nasal steroids, oral steroids, and antibiotics.

I am not getting better.

I still do not have my voice.

I still have issues catching my breath doing the most trivial of tasks

With one exception, this entire experience is MY FAULT.

And now, Im faced with the fact that my voice will never recover. I may get some vocal range back with intense speech/vocal therapy, but I will never have MY voice again.

My lungs may never recover. With some of the changes Im making NOW, I might get SOME of my lung function back…..SOME.

I am extremely mad at myself because I could have prevented these issues by making REAL lifestyle changes.

And, in case you were wondering just what it is Im going thru…..the diagnoses is two fold. My lupus has attacked my pulmonary system and due to the other factors mentioned above, I now am also diagnosed with emphysema and COPD.

This effectively means that I have NO choice now but to make lifestyle changes.

This is not the way it should have went down. If you are reading this and not watching what you eat and are a smoker (even an occasional smoker), MAKE THE CHANGES NOW!  Do NOT wait til you get THIS sick.

 

30 Days of Truth – Day 27-Whats the best thing going for you right now?

One of the blogs I follow has recently been posting these 30 Days of Truth writing prompts. (See list here: http://hope.gr/30-days-of-truth/ ) I thought, what a great idea!

Whats the best thing going for you right now?

The best thing right now? My current lupus treatment options.

Yesterday I started Benylsta infusions. I previously was part of the clinical trials before the FDA approved them.

This time its different. For one, this flare is worse than the last one. It seems like they are progressively getting worse with each one. This flare requires immuno-therapy infusions, albumin infusions and now Beylsta infusions. This flare also requires SERIOUS lifestyle changes. (Which Im doing begrudgingly)

Yesterdays infusion has left me completely worn out, sick to my stomach, and otherwise bleh. I dont remember feeling like this during the clinical trials. Luckily I dont get another Benylsta infusion until next month, so we will see then how it goes.

But even tho I am not feeling well right now…..these treatments ARE the best thing I have going for me. Because without them, I WILL get sicker, and my kidneys ‘could’ fail, requiring dialysis. And quite honestly, that isnt something I want to do.

 

You dont know me, you dont know nothing about me!

Earlier this week, I was ‘confronted’ (for a lack of a better word) about posts Ive put on facebook, and my responses to other peoples post on facebook. I immediately told that person, that you cannot control what people post there, nor can you say what is or isnt okay to post.  Neither of us posted anything horrible, and I even had a third party check both of our pages just to make sure we werent ‘in the wrong’.

During this conversation, it was said that I am ‘too negative’ in my facebook presence because I post about my journey thru this most recent lupus flare. Granted, I dont pull any punches on any of my social network site, and I have been posting what I, as well as others, have found informative regarding lupus. I also post alot of racing stuff – and NONE of that is negative. I responded with these facts, as well as the fact that this person doesnt know me outside of how she knows me.

Her response was….and I quote ‘and Im glad about that’

Now, Ive been sitting on a draft of this blog all week….that way the tone of this post would not be so……horrified.

First of all, how does anyone know who you are when you only spend a small portion of the day with you? How does someone know anything about you when you do not share ANY common interests?

And whats with the judgemental-ism based on that?

Those who I consider my REAL friends share interests with me, as well as my family. And ya know what? They are actually flabbergasted that ANYONE would call me a negative person. Those people see me smile because I am enjoying the activity Im involved in. Those people are appreciative of my support as well as knowing that even tho I am feeling rough, Ive still ‘shown up’.

I mean, just because you only see me in pain doesnt mean Im negative. Yea, Im struggling. If I vocalize that, it doesnt mean Im being negative. It just means I need a little more TLC.

Yes, that person (as well as some others) has been removed from the privilege of seeing what I post on facebook now.

And for those of you who know where I got the title to this blog post……Im sure you are smiling.

 

Two shots and a Remicade infusion

No, Im not talking about ‘those kind of shots’ – Im talking about cortisone shots. I got one in each shoulder today because of the swelling and range of motion issues Ive had in the last couple of weeks. I go back for physical therapy on the left arm Wednesday.

Im still waiting to find out how Im going to get my TENS device. Ive been told that I will own the machine rather than ‘borrow it’ short term.

I had my second infusion of Remicade and got my lab results back. My potassium is finally recovering….and quite honestly Im always baffled at how it could drop the way it does. And…..my white blood cell count has dropped below 10000, which is fantastic news.

I have to wait a week before resuming the Albumin infusions, and thats only if my labs come back decent.

 

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.

 

Bye Bye White Blood Cells

Today I had the first of 3 Remicade infusions. Thats what Im told anyway.

Due to an unusually high white blood cell count after having an albumin infusion last week, my doctor thought it would be in my best interest (dont you just love when they say that?) that I halt any further albumin infusions and not begin the Benylsta infusions until we have a handle on my amazingly over reactive white blood cells.

Reminder for those who may have forgotten: When you have lupus, your white blood cells not only attack the stuff they are supposed to, but they attack the healthy cells also. That, is what causes inflammation as well as difficulty getting better.

Thats where Remicade comes in. In my case, my doctors are using it as an immuno-suppressent. They believe that todays treatment will kill off approximately 20000 white blood cells. And while I get asked alot of questions, (some I do not know the answers to) I know that my immune system went nuts after the albumin infusion, and for the most part, made it like I didnt get it.

And that is why I spent all of last week feeling so lousy.

So today, I bit the bullet and said goodbye to most of my immune system. I will have to be careful to stay aware from sick people. And me and my Lysol will become very close friends.

But, when you look at the big picture (another phrase used by my doctor) it will allow the other treatments to ‘take’.

And quite honestly, I dont want to waste my time losing time from work and co-pay money for a treatment that wont work, when there is an alternative.