Monday, February 13, 2012

still around

Been gone a long time...

lots of twists and turns have occurred since my last update.

It's been a very hard time.

But I have come through it , stronger and more determined to move forward with a positive outlook and expectations.

Monday, April 18, 2011

all is going well..

Saw my doc this mornng ...and everything is going along very well.
I have had huge improvements over this time last year ..yayy.

The latest results on my labs said so many things have improved including my liver !!

I am going to continue on the same medication regime, yes , that means the chemo too. but he asked how I am handing it and honestly I think I am doing pretty good with it he said great lets keep at it .

The blood pressure continues to be way too high and with the result increase in the meds for that we do hope it will improve soon too.

But over all the visit was very positive and I have a good outlook over all.
And tomorrow is my birthday ...good news is always nice for your birthday. :)

Friday, April 15, 2011


been gone for months and months.
life got very hard.
it still is actually but I thought it was time to at least acknowledge my page here.
I go to see my rheumy again next week .havent been for over 4 months now.
I think he will see some improvements so not sure if that means meds get adjusted or if we just keep doing what we are doing. time will tell.

Saturday, October 16, 2010

just a lovely lazy saturday ............

Today I plan only to take my time and enjoy the day. No pressure to have to accomplish anything in particular. Don't get me wrong I have a small to do list but if it's done today or tomorrow it's all good I just won't get hung up on it being urgent.

Living with lupus one must learn that balance is the key. I am quickly learning this. With lupus many of the everyday tasks that others take for granted are monumental efforts to us and in doing them can have repercussions of a new flare kicking in.

Most of us with lupus find this out the hard way. As we push ourselves to continue to try to live a normal life like we used to. This is the new normal. This is the new reality. The sooner we accept and adjust the easier our lives will be.

We learn to appreciate so many things. Getting up and out of bed and into a shower is a major accomplishment for many of us on any given day. Many times by the time its done and we are dressed we are almost ready to head back to bed.

I have learned to find value and a sense of accomplishment in those type of tasks now. They have meaning to me where as to other healthy people its just part of their normal day. To me being able to do them means I am having a good day. I have accomplished something it builds my self esteem and makes me happy. For there have been many days where I could barely get out of bed. Oh how our values and perspectives change when stricken with a chronic illness.

Don't get me wrong I still have many tears and frustrations because I can't do things like I used to. I would not be normal if I did not feel that. Yet, I am learning every day and accepting my new normal a bit more every day.

When I am home in my own little world, it is so much easier to accept. It is when I venture out to a store or a walk in the neighbourhood that I realize how much I have lost. People look at me strangly when I who am only in my 40's and look fine and healthy , stop to push a door opening button to a store. Or when passing through a door someone looks at me as if I should be holding the door for them to go through as well. I can barley get the door open for myself. But they cannot see this.

I am not shy however, if someone be bold enough to say something, I have no qualms to tell them I have lupus, a chronic invisible illness with no cure. Some people look at me like I have two heads and some people actually suddenly become a little sympathetic or caring.

Anyways, today is a pretty good day, my symptoms are manageable and I will enjoy what I can of my day.

Sunday, October 10, 2010

lil bit of venting........... :)

It's fall and I really love fall.

It is generally a super happy time for me. The weather is crisp the way I like it and the leaves are turning colours. It is all good.

However, I often think of my bio sister (M) this time of year, don't ask me why, she treats me like crap. But yet I still let her enter my head, and I can only attribute this to the fact that I have only ever tried to build a relationship with her based on honesty and truth, and always holding out that somehow she would one day wake up and see things as they truly were.

Unfortunately she does not value these morals very much. She has a very skewed view of how things were and how things are.

She has had her issues, Lord knows we all do.

I tried to be there and support her when her marriage was on the rocks , even though at that time I didn't know the deeper reasons. I tried as much as I could , though long distance, to be there for support and encouragement.

There was a spell of time a couple of years in fact where she would be so annoyed at my phone calls, I would be just calling her up to say hi , thinking of you , I never really had anything drop dead important to say ..but like now even ..she would just pop in my head and I would call her to let her know I was thinking of her.

I used to think it weird that this was annoying to her but I would later come to realize this was all probably partly due to the fact that she was dealing with alcohol addiction and eventually became a full on alcoholic.

I would have tried to be there for her through that too but for some reason she has always pushed me away and made me out to be this big bad person. I am after all the older one ( by all of 11 months) the instinctual big sister syndrome kicks in and I just want to be there for her.

Apparently this was not wanted by her and she would push me away and cause disagreements and twist my words and my intentions at every chance she would get to keep me further away.

You would think I would learn but no , every year I would try yet again to open the door and see if maybe her pickled brain would have sobered up and realized that maybe her view on how things are was a might clouded by her alcohol.

But no, she was still as mean and down right cruel at times as she can be. Everyone in my family has kept on saying , leave the door closed , she does not deserve you, you care too much , just let it go.

Of course I would never be able to let that happen. Always hopeful of a change and the years went on.

At one time I had my suspicions of she might happen to actually be a lesbian. I delicately said to her that if her problems were stemming from her sexual orientation that I was okay with this and that I would be there to support her.

Well, she flat out denied that this was the case and I am sure that painted me badly in her eyes yet again. Although a couple of years later she had divorced her husband, declared her lesbianism to her parents and moved in with another woman. So , I say , how bad can I really be.

I am very in tuned to people. I pick up on things.

And she has declared her new ( well I think 6 years) of sobriety over and over and this is a good thing of course. I am sure she was drinking to deal with the fear of coming out . Once she came out she no longer needed to drink.

But again, nothing has changed with us her memories of how she saw it are still her way is right and the truth and my ways are wrong. Except I have always been sober and she has been from her own account quite the drunk, but yet she cannot accept that perhaps during those years she just might have treated me badly .

She often writes on her blog ( which I read and she knows it ) in ways that boggle my mind. Talking of how important relationships are and how great things is a quick clip from her blog "I am thankful for my friends, both online and in 3D. I am thankful to be able to say I have friends I have known for 30+ years and still hold them as close in my heart as I did when we were childhood friends. And, yes, I am thankful for even the bad things that have happened in my life, for if not for those, I would not be where I am today. I am certainly thankful for getting sober and staying sober for all these years. I attribute that to my family and an online community" .I find it so sad that she pitches this in words and yet her own actions say the complete opposite.

She only likes things in the world that go her way and agree with her in the moment of her life. It must be sad to only want relationships with people when they only take your side on issues or ideas and cannot just be themselves and have likes and dislikes as well as be a friend.

I often wonder if she ever truly looks in the mirror and sees who she is and who she has become and how she actually treats people. She can't possibly or she must be totally blind.

I find it funny how her words on her blog talk of kindness and friendships and yet she treats someone who has only ever tried to honestly get to know her and be there for her like shit.

I sent her an email in the spring after coming to terms with my illness and working on getting a handle on what my new life was and one day it occurred to me yet again. That I needed to contact her . I had been so sick for so many years. Seeing so many different doctors each treating each symptom as a problem of its own and never really finding answers. Until last year getting my lupus diagnosis.

And then speaking with others of my biological family and getting a ton of health information that all would have been so much more helpful earlier on. I would have likely had a diagnosis sooner and avoided having had my liver involvement.

Anyways, I emailed her because as mean as she is and as spiteful she is toward me , we are still birth sisters, I still had this big sister syndrome thing where I feel I must do what I can to try to help her or protect her. ( unfortunately she does not feel any thing sisterly toward me) ..

I write her and tell her about my diagnosis, and that I felt she needed to know , as since it was so hard for me to get a diagnosis not having had any family health information for so long. That if by telling her of my issues etc should she ever be at a point in her life where this info might come in handy I wanted her to have it.

Well, first she made me feel like shit for contacting her, how dare I , she has her perfect world now and I intruded upon it.
Then she basically let me know that it was too bad I had lupus but in the grand scheme of her life she really couldn't give a shit.

Well, I have to admit, even though every time I open the door to her she slams it in my face , I juts did not see this coming. My family thinks I am just stupid for not seeing it coming as it is just what she does. I guess , I thought for a moment, she would see the point of what I was trying to do. I was not looking for a relationship, I was not looking for her friendship. I was mearly wanting to give her something that most adoptees would KILL for which is information of any kind on health issues. But no, she saw it as some plot or who knows what in her twisted head.

So once again in talking to both my family members and my birth family members they have all told me over and over again ., she is just a self centred , selfish , bitch. plain and simple.

And try as I have to not allow myself to see this , finally this year it was getting through to me.

I was reading her blog not long ago and she even will write little jabs at me on there, it's almost like she is a bully.

I wonder why she has to be this way.

She who says she grew up in the perfect loving family should be more secure then she acts.

Maybe deep down she has resentment of me , that must be it. But why resent me, I actually had a very abusive home where I went and all I was ever thankful for was in knowing she did not have to go through such a thing.

oh * sigh* I will never figure her out.

But I know who I am , I know the loyal loving caring friend I have been to those in my life, and it is sad that she will never allow herself to get over her issues and find out for herself who I am.

She's missing out on a pretty awesome person, I sleep well at night all the time, I know who I am and very much like who I am and who I have become.

And I am learning to accept that she is not who I thought she was all those years, I have to see her for who she really is and that is the hardest part because I do not like who she really is. I like the idea of she is my baby sister, my blood, my family...but now after all this time I am learning to get rid of the fantasy of who she is and how we could be and see it the way she is and the way it is.

She just doesn't deserve me in her life and I deserve better than to keep trying to make it work all the time. The others in my birth family have moved on very well past her, they saw her ways long ago, and she is basically dead to them, it seems so harsh but yet by doing that they have not allowed her to hurt them time and time again. I need to do the same as they have and put her and the past and all that behind me and move on.

Friday, October 8, 2010

on the mend ....or so I hope :)

Quick update here...

Went back to hospital on Tuesday am and was able to get the IV antibiotics out of my arm although I need to continue them until saturday in pill form.

Went Wednesday as planned to have the broken tooth extracted..and I am happy to report that sucker came out and I had no complications ( insert very happy face here).

Went to my family doc to follow up on some possible kidney issues and discovered the biggest concern was just my very low potassium levels..which doc feels a banana a day and an orange should take care of blood tests will be done later today to get a new reading and then again in 2 weeks..if the bananas and oranges do the trick I am good to go ..if not they will be adding potassium pills to my already huge list of pills this we do not want..

Other than that I am looking forward to a ton of rest this weekend. It is thanks giving weekend here in Canada. We don't have really much planned but we will see a few people over the weekend but the biggest plan is to rest. :)

Saturday, October 2, 2010


I haven't been able to blog the last few days. I have had just way too much happening and just did not have the time sorry .

I will try to fill you in on what the last week has been like.

I broke a tooth about 2 weeks back. It did not hurt or anything, just half of it was gone and what was left was filling and some tooth. I had planned to leave it be until after october when finances would be in a bit better shape.

Unfortunately last tuesday it decided to cause unimaginable pain and I suffered the entire day and night with no relief. So Wednesday I went to the dentist to have them take a look.

He told me it was in fact infected and because so much of the tooth had broken off it would need to be extracted. The problem was the infection they cannot pull the tooth like that need to clear up the infection first. Should be easy enough one would think. But no, enter here..a person with lupus on not one but 2 strong immunosuppressents as well as many other medications..and a person who is deathly allergic to penicilan .

So he gave me the prescription for a very strong anti biotic given to people with dental issues who cannot take penicilan and off I went.

Should have ended there .......but nope not for me...............

Wednesday night I woke in the night feeling very ill and would head to the bathroom feeling I would be sick to my stomach..I was dizzy at times, I was also having bouts of high temperatures.. this happened a few times and then the one time I still am not sure if I just slumped to the floor from exhaustion or if i passed out but when I woke my face was all numb..

My cheek, jaw, chin and lips ..but only on the left side of my face and of course I still had the excruciating pain from the tooth. I was now wondering had I maybe had a stroke???

Fearing this I woke my hubby and we went to the hospital.

At the hospital they evaluated my condition, also suspecting a possible stroke they did many tests first to determine if this was the case. Thankfully no..they think the numbness is being caused by the infection pressing on a nerve in my jaw.

So many blood tests later and gravol for nausea and Iv of fluids to rehydrate me...they got the results for my blood work showing some concern of my kidney function, which I need to follow up with my other doctors, as well as low potassium levels and very high white blood count obv . from the infection.

The course of action was to start my anti-biotics by IV and hopefully it would be easier on my already compromised system due to the lupus. And to come back on Saturday for re-evaluation.

So, off I went , to the clinic where they set you up with an IV pump that you stay hooked up to with needle in arm and other end attached to this little pump that feeds me the meds over a 24 hour period ..and then go back to the clinic every 24 hours to reload.

Saturday, today , I went back to be re-evaluated..I still have the numbness in my face but the pain has settled some.

It was again decided that the best course of action is to continue with the meds in IV form at home for the next few days and return to the hospital again next tuesday. Hopefully the tooth extraction will then take place next wednesday at the dentist office as planned.

its been a very tiring very draining week. But I am hopefully this will be over soon.

Thanks for checking in on me , always appreiciated.