The Chicken or the Egg? - Genetics and Family History of Illness

I never really knew how important all of that was until I got sick.  I mean, if you are sick, you are sick right?  Why would you really need to know where it came from or even more so, how dire your future may be. 

Hmph… really! why? Just live your life and hope for the best.

But when you get sick, there is a burning desire inside of you to find out where all of this started, well at least for me.  What’s funny is when I first started the journey of trying to find all this out, everyone basically (and some still do) throw up great defenses as if to say “well you didn’t get it from our side of the family.”  In that way it was presented though it felt as if I was out to blame someone which of course I wasn't.

Even today, I believe I found the link to all the autoimmune issues however my maternal grandmother (whose side my theory belongs to) believes that the family members that are sick - my two cousins (one has Lupus, the other has antiphospholipid syndrome) - got it from their other side of the family that we have no relation to.  She bases this on that their Aunt has Lupus as well so yes it just makes it that much more confusing.

Even this grandmother of mine has developed a kidney disease and I asked her what type of disease it was and she told me that she doesn’t want to know.  Don't get me wrong, she is taking daily medication for it and seeing a nephrologist regularly but she actually does not want to know the name of the condition and/or disease she has.  She always taken good care of herself and never drank or smoked and not diabetic so I have to wonder what is going on.  But it’s part of my family illness and I believe that I should know.

Maybe one day I will solve this mystery (or not, since no one wants to discuss it)... or yet, I may in fact be the very first generation of autoimmune in my family but I don’t feel that in my heart.

Catching Up

Just wanted to let you know that I haven't gone away, I just have been trying to catch up with work and stuff at home after a few days out of town visiting family.  Just getting my bearings straight or however that saying goes :P ... missed the blog community tremendously!

More? I'm Good, Thank You

The nausea went away finally and then OUCH!... dang did something bite me?  Oh no!, popped blood vessel.  Now I have had these in my fingers but never in my palm... let me tell you, they are a bit more painful.  Owwy!

In case you can't see it, it's that bruisy thing right under my index and middle finger                                                                         --->

Tummy Troubles Day… blah

It’s not a pretty subject folks but it’s hit me hard today.  I’m here at work trying to keep my head up and my stomach down and to get through the day.  I hope it’s short lived.  Not sure where it came from.  I’m not on any hard meds at the moment (just Prednisone, Plaquenil, some other misc stuff that shouldn't affect me that I've been taking a long time anyway, plus I actually cut back the NSAIDs -my own decision- because I was ironically worried about my tummy) but I guess that’s the case with this illness… ‘Stuff’ happens. 


Here’s to fighting through it with a smile anyway :)

Wanting to Make a Difference

World Lupus Day

I have my purple on today and my “Someone you know has Lupus” bracelet (last year’s model) -I really need to get the new one-.   I have my Facebook profile picture set to the World Lupus Day picture.  That’s really as much as I can do.  I really wish that I didn’t have to keep my illness hidden.  It’s a shame that the fear of my work finding out makes me feel like I’m living a lie about myself.  I want to do more to spread awareness and I feel like I fail all of us Lupus sufferers because I have to be so quiet… that I’m a hypocrite to be an advocate to support awareness but I can’t do much myself.  I think that I will be looking into some volunteer opportunities that I can do which will not put me in the spotlight but will allow me to make a difference.

My Mother’s Day…

Well I’m a tad late but I hope that all the mother’s and children of mother’s and mothers of fur babies and so on had a lovely day on Sunday.  Mine was great with the exception with both of my husband’s mother and my mom out of town (we did send them beautiful flower arrangementsJ).  We did the usual take Mom (moi’) out for lunch which was really nice.  My enjoyment out of it was not so much to honor me but I just love the time spent with my boys.  With my son as a teenager, he pretty much likes to do his own thing so it was really nice that we all got out as a family.  We had lunch on the patio at this nice little Mexican restaurant.  Afterwards, went home and put my feet up for the rest of the day.  Ahhh… and you just know I had to squeeze a nap in there. 

My husband actually managed to do a few loads of laundry and some dishes… score!

Lupus Books – My Essential List

The internet is a big source of information, search engines can basically get you anything you are looking for nowadays.  Just type it in and ‘voila’!  I love the internet, I love research BUT I’m very skeptical in certain areas, especially when it comes to my health.  Sources on the internet can be misleading, unless from a reputable source, so I find its still in the best interest to carry some actual paper references (no, they aren’t considered stone age material yet).  But I just wanted to share a few of my favorite Lupus (and other) books.  Some or most of those reading this may be very familiar with these selections however if this could help a wandering newly diagnosed that happens to stop by, I’d like to share my suggestions:

(Please feel free to enter any others in the comments! J )

1)      The Lupus Book – Daniel J. Wallace M.D.

This is pretty much THE book that everyone with Lupus has and for good reason.  It’s written by a very knowledgeable rheumatologist and gives you all the facts about the disease.  Nothing too technical but no fluff either.  To this day, even years after my diagnosis, I still refer to the pages in this book and I always know where it is.

2)      Lupus Q&A: Everything You Need To Know – R. Lahita, R. Phillips

I like this book because it’s in a Q&A format and the questions are, in my opinion, the same questions that you would have when you are faced with your new diagnosis.  It pretty much covers everything that would come up in your head that you would want to know or a close friend or family member would want to know.  It gives thorough yet short, concise answers that even a lupie brain wouldn’t have trouble with.

3)      Living Well With Autoimmune Disease – Mary J. Shomon

This book gives good bits of info on a range of different autoimmune diseases as well as referencing sources for more info.  Because lupus (and other autoimmune diseases) usually don’t like to travel solo, it’s good to have a reference book just in case your doctor pops another diagnosis surprise on you.

4)      The New Sjogren’s Syndrome Handbook – Daniel J. Wallace M.D.

This is basically the same as the Lupus book but as you guessed it is about Sjogren’s.  I added this in because I have Sjogren’s as well and the material out there is very, shall we say, sparse.  Since many of the symptoms of Lupus and Sjogren’s can overlap, it does help tremendously to have ‘twin’ books written by the same author to cross reference and differentiate my symptoms between the two diseases.

Chronic Illness and Communication in My Marriage

I hear differing views on this subject on whether you should open up to your loved ones on how you are feeling or just keep it in.  I really don’t complain about my pain and fatigue however sometimes it’s pretty obvious when I’m taking the opportunity to steal some time for some much needed sleep when I can or when I clean a room in the house and pretty much am done for the day (or at least the next few hours).

Many people say it’s important to share with your spouse or partner exactly how you are feeling physically when you are chronically ill but I always worry that would get old and not mean much.  I personally also battle with the fear that my husband will see me as an eventual invalid that he will have to take care of someday (irrational fear – I’d say so but I deal with past abandonment issues growing up that I may save for another blog entry another time). 

We have been together since high school, the healthiest days of our lives.  THAT HEALTHY PERSON is the person he chose from the beginning (yes, that kind of crap goes through my head all the time – especially at my weakest and lowest self esteem moments)

So needless to say, I keep a lot of verbal complaints to myself.

I’m not sure if it’s the best thing because when I do get pain; my husband looks at me like it’s coming out of nowhere.  He then ‘empathizes’ with me and tells me that he feels the same sometimes. (The tone seems to have a sarcastic hidden meaning behind it, as if to say ‘everyone gets pain’)  That it’s probably better to push through it.  I think it’s the athletic mentality in him to give this advice but probably not the best advice in my case.  Regrettably, I do push through… then PAY for it later.

I wish I had the inner strength to sit him down and tell him what this is really doing to me physically and psychologically.  He has gone back and forth in his reactions, sometimes with sympathy, sometimes as if he thinks I’m just overreacting… I’m just not sure if its denial or just what it is.  I have put myself in his shoes and I honestly cannot say how I’d react without actually being there so it’s hard for me to judge. 

So I pretty much just keep my mouth quiet, it’s the non verbal words that are the hardest.

My Experience of My First Lupus Walk

My alarm went off on the Sunday morning and I felt an excitement that I was going to accomplishment something today, not just for myself but for something so much more.  Little did I know how much and what that impact would mean to me.

My husband and I got to the meet up place where all the walkers and runners were and I was amazed of all the people that were there.  The place was so well organized and was so well decorated and festive.  Lots of vendors and businesses that had donated their time and resources. 

As I looked around, I saw people wearing t-shirts custom made for their teams mostly in dedication to the individuals they were walking for.  I felt the devotion and the love to these people and my heart was so touched.  The people were happy to be there to sacrifice this day for their loved ones who were sick.  I saw stickers on backs of the walkers that said "I'm walking for..." with names and named relatives and friends and as simple things as 'me', 'my beautiful mom', 'my best friend', 'my aunt', even 'my neighbor'.  I quickly stood in line and grabbed a couple of stickers and wrote one for myself and one for my husband ('for my wife').  We put on our stickers and started our walk.

As we started on our 5K journey (a tad over 3 miles), I looked to the left of me and noticed a woman with a cane.  I looked a little further down and noticed another with a cane and also had a scarf around her hair as it was apparant that she was probably going through chemo with hair loss.  I was instantly motivated in that these women were pushing to walk and fight for this cause no matter the pain.  I was so touched in a way that I cannot describe and I was determined that this was a fight that we have to keeping fighting.  As we kept walking, we saw a few walkers together with stickers on their backs with "In Memory Of".  I immediately stole a glimsp of my husband because I just knew.  I knew that reality just hit him of what this disease can really do to a person.  I didn't say a word.  I did see a tear.  He did tell me of the impact of that much later.

Our walk was nice, sometimes it was fun watching the others laugh and play and watch the kids run around.  Other times, it felt like it was just my husband and I as we strolled together and enjoyed the scenery.  This walk has done so much for us. 

I didn't actually feel the impact of 3 miles until after the 2ish mile mark and I could feel my ankles start to burn and sting.  It wasn't too bad though and I knew that I could push through it, I told myself  "Today I will push through it!" And I did and I didn't end up too bad. 

After the walk, everyone was all smiles... you could see the accomplishment on their faces, not for the 3 miles that they just did but for the cause that they just made an impact on!  This was my first walk, it will not be my last.