Those that stayed, I thank you.

   I've been thinking about family and friends lately. It's the new year & I tend to be very thoughtful. I find it quite interesting in how various people have reacted to my diagnosis or me just being sick a lot. I have a very small group of people who seem to always be there for me. They have busy lives. Some have children or are in school & working full-time but, they still managed to say hello & ask me how I am. Or they just contact me and we talk or text or even exchange emails and that is just great to me! Then there are the ones who have seemed to disappear from my life. I never hear from them, they never ask about me when in the presence of people that know me, it's like a don't exist to them any longer. Some of the people that have left my life or just plain ignored me have surprised me by doing so. I never thought that anyone would just forget me, but they have. I used to hear the word "busy" a lot but, that is just an excuse. If you want to keep a relationship going you do, no matter how busy you are. I certainly don't expect people to be contacting me every day but once in while would be nice. It's hurtful to me to be ignored. Back 2008 when I was first diagnosed I got a lot of the "how are yous" but, not anymore. It's almost as if I'm a bore to them. Sad, but true this is how I feel. I've spoken to someone that I am very close to and they told me that it is those people's lose to not be part of my life any longer. I know this in my heart to be true but, it still hurts my feelings. At the end of 2011, I had a revelation of sorts. I realized who I could count on and who was "real" in my life. To those people I will be forever thankful. I've always been a good friend, I'm not perfect, no one is. But, I'm a good wife, daughter, sister, cousin, friend, aunt & Godmother. I put my whole heart into my relationships. But, I can no longer sit back and watch people mistreat me. And I no longer will!

   Recently, I had a relative disappoint me in a way that he will never know. And I'm almost positive he wouldn't care or understand if he did know.  I come from a large extended family. There are certain members of my family that are always supportive. They aren't just supportive to me but, to everyone. They know what family means.  When you need them, they are there. Then there are a few who have become self-centered, uncaring people. Those people I don't understand. I guess it's because they weren't always that way. We all have different hobbies and interests but, once upon a time these people found a common bond with me. This isn't my first rodeo with chronic illness. When I had issues with health in the past, they found the time to care. But, not anymore. Sad, but true. Now mind you, I have been there for these people I speak of. I have been a very good family member. I don't deserve what I am receiving! Some people think it's wonderful having a large extended family. But, sometimes it can be hard. In this instance there are more people to hurt you. I know that things change over time. People grow up, marry, have children and so on. But when people change from being caring considerate people to be selfish & cold, I just don't understand that, and I never will.

Then there are friends, the people you chose to become part of your life. I've been lucky to have a few close friends who are very supportive. Funny thing is that they all live far away from me. Yet, they find time to keep in contact with me. Of course, there are a few that have left my life. I guess to them I became boring. Or maybe I couldn't be there for them as much as I used to so, they gave up. They forgot when I was their friend & listened to their problems. Now that I needed a friend they weren't there.  Their lose right? It's easy to say but, hard to swallow sometimes.

Life has changed for me a lot over the last 3 1/2  years. I have more challenges than most people know. The ones that know are the ones who care enough to ask. The ones that don't care, I've had to emotionally let go of. Will I be okay? Of course I will, I made a promise to myself for this new year. I have promised to concentrate on the people in my life that care. The ones that don't I wish them well but, I'm not holding my breath anymore for them to be part of my life. I have a lot to offer and if people can't see that then, like a wise person told me....it's their loss.

So, life goes on and I will continue to live a happy life. Yes, I struggles but, I'm not the only one that does. When I struggle I just hold a bit tighter to the ones that are always there for me. And in turn I am there for them, always.

Thoughts

  Recently, I've been hearing a lot about people in my community of lupus patients, lupies we often say, losing their battles with this horrible disease. It scares me every time, I read about another lupie passing away. I wonder to myself, will that be me some day? I have this battle with lupus and I want to win! I pray for a cure but, what if I don't make it before that cure is found? Some might say, how morbid can you be? But, at least I'm honest when I confess my fears. I don't think about it every day but, it does come up. And then I'm scared or just sad. Then somehow I push it away with positive thoughts. Positive thoughts and prayer have helped me get through the hardest times in my life. The last 3 1/2 years I've had a lot times when they saved me. They saved me from great sadness & sometimes fear. But, when I read that 10 or more people with lupus dying since Thanksgiving, I not only got sad but, very angry! When are we going to be important enough to find the cure for us?! I also shake my head because most people have no idea of what lupus is or what it does to a person's body. They have no idea that lupus can attack our lungs, kidneys, heart, skin, joints & more. It also can attack something that no one can see or detect, our spirits. We go from people that are ready to conquer the world to people that can hardly get out of bed. In my case, I went from a Preschool teacher turned college student who couldn't concentrate on my studies because of the pain in my joints & the severe fatigue. It also attacked my body some years before & gave me high blood pressure and later pulmonary hypertension even though that is mild, (as my doc would say) it still scares the hell out of me! I have problems with low lung volume that I never had before this dreaded disease and I have other "cousins" of lupus like fibromyalgia and sjogren's syndrome. The fibro, I've had since the age of 24 that arrived before the rest of the family. I'm now 47 but most days I feel like I'm 80 years old. I don't look it but, who cares. That's another thing about this disease is you don't look sick. That fact is both a blessing & a curse. It's a blessing because when I don't want to worry my family, I can hide it, or I think I can. Most days, they figure it out.  Although I look fine, I'm not. When I say no to events or ask for my cane or wheelchair more they know. And when they look into my eyes that turn green with emotion, they know. Fibro and lupus keep me in pain, sjogren's keeps me uncomfortable by drying out my eyes & mouth, pulmonary hypertension makes me out breath at times. There are many days when I just want to scream. But, I don't. I rest because there is nothing else I can do. I take my medications, go to my doctor appointment, have my benie infusion and I do my best to survive happily.

Here are some of the things that I do to bring joy to my life:
Cuddle with my husband.
Watch a good movie.
Talk with friends or family and sometimes both.
Keep in touch with my lupus "family" through Facebook & twitter.
Go shopping, even it's one store, I'm happy.
Apply makeup or do my nails.
Romantic dinners with my husband.
Look at pictures of my niece & Godchildren who most always make me smile.
I used to eat chocolate too but, now I'm borderline diabetic so, that I had to say goodbye to. So, maybe sugar free?

And I write, or sit and listen to music. Writing & music take me to places that no one can. I'm in healthy place when I'm humming or singing along with a favorite song.

And lastly, I cry. Because believe it or not a good cry helps me. But, of course having sjorgren's my tears don't always come out.

Benlysta diaries part #5

 When you have chronic illness there is hardly a break from anything, even the holidays.  Although my Christmas and New Years eve & day were wonderful in between I had my 5th infusion. This thus far was my worst experience with my monthly doses of benie. I have come to call it “ benie” because it sounds nicer that benlysta, at least to me.  The infusion went well but, the staff at my doctor’s office were rude, in a hurry and just plain made me feel unimportant. From the moment the nurse checked me & took my vitals I knew it was going to be a bad experience. Maybe her telling me, “We are trying to hurry so, we can all get out of here at a decent time.” were the words that didn’t taste good or the fact that even the doctor and infusion nurse seemed distracted. I know that they see me often and that maybe I’m not as important as them getting home early to play with their Christmas gifts being it was only 2 days after Christmas. But, if I have to live with this horrible disease that has in turn given me other horrible diseases they can be patient and maybe a bit kinder. I had no take a break, I was there 2 days after Christmas being poked and prodded. I was the one sitting in the chair for close to hour with a biologic pumping through my veins.  And I was the one that suffered for 2 days after with severe fatigue and flu-like symptoms. I didn’t get to hurry and feel all better. I know one might say, give them a break. And I did, by not complaining one bit but, stewing inside as I felt like a part on an assembly line in a factory. Now let me clarify that I too have worked in the medical field.  But, I never once made a patient feel unimportant. Even if it was the 20th time that I took their vitals, I did with a smile and words of encouragement. It’s hard enough being sick ever day but, when the trained professionals treat you badly it makes it worse.  So, benie infusion #5 is done and yes I survived but, I do hope that at the end of this month I’m not hurried or made to feel unimportant again. I’m a patient, I have feelings don’t make me feel like I’m wasting your time. Because I certainly am not.

 As for improvements since I started my benie, I feel a very slight improvement. I feel a bit more energy but, that doesn’t last long.  As far as pain, it’s the same. I still take my evening vicodin and maybe I should take more but, I’m trying not to hurt the rest of my body by downing narcotics. So, I do other things like rest and applying heat. I rest a lot, sometimes all day long but, it’s all part of my journey with lupus and the other connective tissue diseases I have. I also try to enjoy my life. I’m not up for dancing and still use my cane and wheelchair. But dinners out and recently going to a Bowl game keep me happy. My husband is a wonderful man, he does his best to take me shopping every once in a while even though he hates it, he does it for me. I love him even more for all that he’s learned to do to make my life special. It would be almost perfect if it weren’t for these pesky diseases that have a thumb on me. But, I overcome and do the best I can. And each moment of happiness is enjoyed more than the one before. I’ve always been appreciative of life but now I think I cherish it more.  I hope and pray with the months ahead that “benie” will do his work and that I will have more energy and less pain. It won’t cure my lupus but, it’s the only treatment that I have for now and I’m giving it a shot!