Mama Sick

Yesterday was supposed to be my monthly Orencia treatment that controls my joint problems from my RA/Lupus.  The administrative assistant is about to take my payment when she says, “Your referrals have expired”.  Apparently, I had loads of visits remaining, but the referral for them had expired.  The office said it I could get in touch with my Primary Care Provider and they would grant the new referrals, then they would do my infusion.  

Of course, my appointment here was at 1:00 and my PCP’s office happens to be on lunch from 1:00 to 2:00.  Lunch as in no one will answer the phone, whether you call, a pharmacy calls or a doctor calls.  Lunch as in It’s lunchtime, let’s tell Mr. Smith they have cancer after lunch!  A doctor’s office is the only office that I have ever been to where operations completely shut down.  None of the offices I have ever worked in stopped doing business through lunch.  No matter how small they were, someone was answering the phones at least.

So, I now have to wait an hour.  The admin. gets snippy at me and says that referrals are my responsibility.  I said, “I know that they are except you told me when I started here that I shouldn’t worry because you keep track of the referrals and let me know when I am starting to get low on them”.  She then got all fidgety in her chair and stammered “W-well, I-I don’t know who made this appointment but it wasn’t me”!  Sure.  

Look, I know that it is ultimately my responsibility for my referrals.  Lesson learned.  It’s just that, don’t tell me not to worry, that these things are kept track of, and then neglect to give me the referral information that you have so I have my own record.  

It turned out that the IV nurse could wait no longer and had to leave, so I couldn’t get my drug.  I also couldn’t get the results of some very important blood tests, even though the doctor was staring at me and could have at least shouted them out.  I now have to wait two more weeks to get my infusion, putting me at great risk for my joints starting to flare up again, when I have worked so hard to get that under control.  I made an appointment to see the doctor next Wednesday so I could discuss my blood work and hopefully get closer to finding out the reason why I have so much pain in my legs that I have to use a wheelchair or scooter for any outings or why my body feels the need to sleep at least twelve hours a day.  

Sigh.  A long Memorial Day weekend brings fear for me.  Fear that most of the time I have with my son will be spent struggling to keep up with him and being in pain or my body completely giving up and refusing to get out of my bed.  We’ve got no plans, but I will be happy if I can go to the park with him even one day.  I will also be thrilled if he makes poo poo in the potty.

With some of the negative comments I have received, I do feel the need not to defend each and every point made by a few people who know me only through Twitter, but to make a general statement.  

Lupus is a disease that is different for everyone.  It can run the gamut from a flare every so often to being fatal and everything in between  If you or someone you know has Lupus and is able to work full time while raising children or is living many years with very few problems, then that is the lucky hand you or they have been dealt.  This does not happen to be MY experience with the disease.  This also happens to be MY blog.  

I got my first AutoImmune Disease over twenty years ago, if you must know.  Since I don’t want this blog just to be about Diseases I did not feel the need to run down all of my diagnoses and how long I have had them.  My diseases besides Lupus affect the way I feel as a whole, and are exacerbated by Lupus.  

Up until my Lupus diagnosis I did work at a high paying job and worked hard all of my life.  My husband is disabled, and if you read my post carefully you would have seen that I would not be going into any depth about his illnesses since this is my blog.  

If you wish to speak about yourself or your friend’s illnesses, then please do so somewhere else. This is my story, my experience.  If you were so disgusted with me, then why have you kept following me on Twitter and why would you even care to see what I would write on my blog?

If you feel that you know who I am in my 14o character Tweets then please do yourselves a favor and stop following me.  If you or anyone would like to get to know me better and read about MY experience, then please continue reading this blog.

Good health to all of you.

Hello!  After a few months of hemming and hawing along with many life and health crises that I hope will make this blog interesting, I have decided to say To Hell With It and just get going!   I am just going to have to learn as I go because I just don’t feel like getting out a Book for Dummies any more.  

Although this is the first blog that has been all mine, I have been contributing for almost a year to New Jersey Moms Blog, a subsidiary of the Silicon Valley Moms Group and have done a few guest blog posts.  So, I’ve got some good experience blogging, but technically I am pretty clueless.

As you can tell from my blog’s name, mama is sick, very sick.  I’ve got Lupus and a host of other goodies, with Lupus being diagnosed shortly before my son, “Tyler’s,” second birthday.  My husband, “Grant,” is also ill, although to respect his privacy I will not be delving too much into his illnesses.  

I hope to appeal to parents with disabilities and chronic illness, chronically ill people who may wonder what it might be like to have children of their own, and all parents in general.  I have always described myself in 3 short words:  Mother, Wife, Sick.  I also hope to break down the prejudices of disabled and chronically ill people who do not appear to look sick.  Maybe to change some people’s perceptions about why someone who looks as if she is the picture of health might need a wheelchair or a disabled parking placard.  Lastly, I also hope to show people through my life how to be a better advocate for you and your family’s health, whether you are ill at present or what you need to know should something like this happen to you. 

Lastly, I will end with a Mom thing.  If  I am able to do it, I put Tyler to bed every night and thank God that I can.  The bed ritual includes rocking him, saying our prayers and talking about the good dreams he will have.  Tonight was one of those nights where my ever growing two-and-a-half-year-old seemed to fit perfectly in my arms once again, he fell asleep in a few minutes and stayed asleep when I put him in his toddler bed.  A parent’s hat trick for sure.

Thanks for coming to my blog and reading my first entry which I will probably question the quality of for the rest of my days!

Special thanks also to Jonathan Dingman of Fireside Media, who pronounced my blog seaworthy and said I just had to start blogging.

Here we go!