Tuesday, December 25, 2012

Merry Christmas!!

Happy Holidays! It's been awhile. Things are still unsettled. Everyone is trying to figure out.... things. For now my day is quiet and peaceful. My husband and I are enjoying each others company. The kids are giving me a break. This is nice. I'm going to live in the moment!

Monday, December 3, 2012

What to do

My second to oldest child moved back home troubled. He had been living in the streets (not necessarily on the streets) and been exposed to a lot. He called me when he was mentally and physically tired and had finally had enough. On the street thousands of miles away with no where to go. Of course I said come home. I'm not that heartless. I tried to find somewhere for him to go first. But it's not that easy. You see, my son is a transgender.
He hasn't had an operation or started hormones, but he was trying to live as a woman. It hurts my husband to even think of his son as a woman. (that's all I'm going to say about that one for now). I was devastated when he first told me. My world felt like it was coming to an end. Like my son was dying. Intellectually I know my son is still alive. He would just be a she. But as a mom, my heart still bleeds. I've gone to a transgender support group to get some of my questions answered. The main one, "why"? And I learned so much more. Maybe I was more open to hear because these women weren't my baby. The main thing I got from the meeting was how unloved and alone they felt in the beginning by their family. At such a crucial part of their lives when things were turned upside down there was no family. I learned that the suicide rate for kids going through this is 55%! I love my child. I never want him to feel that way. So I had him come home. There are rules. He has to see a councilor. Not because I'm trying to change him, but I want him to be safe. 
Another thing I learned from my new friends was it takes time to accept. I have every right to feel the way I do. It's all a process. I would be seeing the councilor too, but financially it's not possible. It's more important for him to see her than me so I'll continue to go to the group meetings. ( for once I'm not the facilitator! lol) And I have you guys. I'm surprised I haven't landed in the hospital with all the stress.
He learned some other unsavory things on the streets when I lived up north that I said I would never put up with again while he was living in my house. Meeting people on the internet is one. How do I trust him? I can't keep him locked in the house forever. He's testing me I think. He went outside to smoke a cigarette for 3hrs. He had a journal with him and he said he was sitting in a quiet spot in the complex and was writing and talking on the phone. I didn't go out looking for him. I called and got the voice mail. I called a second time and that's when I got the story. I don't want to have to follow him all over the place. He's 22 and should be able to go out. But I don't want the same behavior as before, just a new place. We talked about this before the 'cigarette break'. I have a habit of blowing things out of proportion.(so they lead me to believe). I really don't think I do though. I think I'm right most times and years later they'll admit it, because that's what teenagers do. Hey, I was one once. I'm going to stop here, before this turns into a book. (one day it possible will- would you buy?!lol) For now I hope you all enjoy your day. I'll be back soon!

Thursday, November 29, 2012


The internet. The world is changing. People put all their business on the internet for the world to see. Myself included. I just wrote a whole post and deleted it because I felt I crossed the line. I'll eventually find a way to write it without feeling like I've bared someone else's dirty laundry for the world to see. Sounds juicy, right. It's not pretty, but it's life. People- your children are in pain and they need guidance. When you feel like you've had enough and you have nothing to give because it's falling on deaf ears, you have to give more. The world has become so small and all of it's crap is so accessible. You have to find a way to show them that the world has so many beautiful things to offer. It's all there waiting to be explored. But you have to go get it. You won't find it on the internet. You have to physically move towards it. For those of us with Lupus, we now have to find a way to give and be healthy. Don't get stressed to the point that we get sick. Is this laughable or what? I'm taking you all with me on my journey so that I have an outlet and hopefully can continue to see the beauty in all situations.

Wednesday, October 31, 2012

Being true to myself

I've been hearing that a lot lately. Be true to yourself. Do things that resonate with you. I don't know what feels right outside of my marriage and spiritual beliefs. Those two things are aligned. I know there's more for me. I just don't know what. I get so frustrated. I shouldn't be frustrated. My business is pretty much at a stand still down here. I know it can work because I see it work for others, It just isn't happening for me. I tried to start a Lupus support group meeting down here and even that is hard. I feel like I'm getting no where. I haven't found anyone to post flyers for me.( I put an elastic band on my wrist to snap every time I complain, whine, or nag. Does this count?lol) So, I'm taking it to social media! I have to figure out how to set up a facebook page. I know things aren't easy. I don't want easy. I like a challenge. I don't want it to feel hopeless. I need to feel like I'm making a difference and I don't anymore. (again outside of my family).

My kids are making things work on their own. Which is fantastic! This is what I've always wanted. We talk. We have great conversations and I don't need nor do they want me to solve their issues. I'm finally okay with that. I still have my moments, but I'm okay when they don't follow my advice.

My husband and I haven't gone away together in months. But we moved to a new state and he just got a job that he's happy with, so that will change soon. We have gotten so much closer since we moved.

So now everyone has their own stuff to do and I feel frustrated. I think it started after my surgery. Being unable to get around put me in a funk. I'm not as active as I before which is to be expect. Now it's been 8 weeks. I should be going back to yoga, my walks and what. I had so much activity going on before. I had taken my business further than I ever did. I had a huge move I was preparing for. I had to get ready for a major surgery ( I call a hysterectomy a major surgery). Now it's all done. I'm not cut out to be Betty Homemaker. I keep trying to make my business work and it's like an itchy sweater that you got as a gift that looks fabulous on you, but doesn't feel good and you don't want to hurt the feelings of the person that gave it to you so you keep wearing it. You try to find to make it more comfortable, but it just doesn't feel right. Of course it's not going to work because it's not me. But what the hell is.

I know I can't just sit here and be the sick lupus patient. I hurt. When I eat the things that are true to who I am I feel better. Figured that one out. What's next. Headaches still an issue. Going to see a new neurologist in December. Memory still iffy. I'm getting older. (never thought I'd admit that!) I want to be able to enjoy this new freedom I have and I can't. I should be happy I have all this free time. I can do what ever I want. I just don't know what. Don't get me wrong. I'm not sad and unhappy and mopey. I'm not comfortable in my skin. I hear you want to be a bit uncomfortable because then your growing. What am I supposed to learn?

Live. Laugh.Love.Enjoy!

Friday, September 14, 2012


I still hurt. In a new way now. The body is funny. Just when you think you're feeling better, BAM!! Not. Lol
On a good note, I have a date for the first Lupus support group meeting in Columbia!! October 4th is the big day and I can't wait. I'm putting a flyer together and I'll get them out ASAP! I'm always searching for my purpose in life. I think it's helping people. I'm happiest when I'm helping others. Facilitating the support groups is such an awesome feeling for me. Knowing I'm helping someone come to grips with their illness in their own way, in their own time is rewarding. But is that it. Am I meant to do more? Well, for now this is all I can do in my condition! :0)

Friday, September 7, 2012

Being Still

It's hard being still. I feel like I should be doing something. Then I do something and I hurt! Arg! I want to scream! I'm drinking camomile tea to keep me calm. You see how that's working. I'm going to take a short stroll to remind myself of my limitations.

Wednesday, September 5, 2012

Hello There!

 We're here in SC! I like it. It's new and there is so much to see. Right now I'm not seeing much because I finally had my surgery last week. It went great and was very much needed. ( I had a hysterectomy) To be truthful the pain is not that bad. It's the fatigue and the moving slow that's hard. I work so hard to exercise and eat right so I keep that fatigue and painful joint movement to a minimum and now this is out of my control. So I feel like a hobbled horse. I was told not to exercise for 2 weeks but my body started to freeze up and hurt all over. I snuck in some yoga moves that didn't bother my incision. It helped quite a bit.

On a good note I'm back writing! It gives me time to readjust and plan my what to do  next with my life. When I first got down here I started piling things on again. Got deeper involved in my buddhist practice, tried to get the Mary Kay business moving down here, making calls to get a support group going in my new town, and get the kids situated and help my husband. What the hell was I thinking! I was out of control in no time. I let my Mary Kay business go. It was too much. I just don't have the energy for it. This time I don't feel like a failure. It's just time to move in a different direction. I was going to try to get a LFA Chapter in SC. Turns out LFA doesn't want one here and they have a valid reason, but they also are working on continuing support efforts and I will be starting a new group in Columbia as soon as I recover!! Yay! I miss it!
My buddhist practice keeps me sane. Nothing wrong with living peaceful and wanting that for the rest of humanity. As for the hubby and the kids- I'll always be here to listen and offer advice, but I don't have to solve everyones problems and most of the time they don't want me to. I say this now and in a week I'll be writing how I'm doing something different! lol In a nut shell, it's time for me to plan and relax. Enjoy being taken care of for the next few weeks.


Wednesday, June 6, 2012

Back home

That wasn't so bad. I have to do it again in two weeks. I'm tired. Sitting there for 6 hours I guess I should be.

Still here

2 1/2 hours to go. It's going well. I'm hungry. And bored. Hubby went to sleep. Poor thing worked last night. Oh well, more TV.


Well I'm here. We haven't started yet. It's an iron infusion. Yay! Step 1 - know the name of the procedure you're having. I will be here for 5 hours. Are you kidding me?! I didn't bring enough reading material for this. I just old my husband I need an iPad if I keep having these things done. he laughed. I'm not. They're here with the test batch.


Going in for my iron transfusion/infusion.

Wednesday, May 23, 2012


Still trying to get energy. Where do you get it from? I'm so tired I can barely lift my arms. All of a sudden. Not sleepy, I took a nap earlier. Oh well. Don't try to make sense of the unexplainable.

Monday, May 21, 2012


Glad I had the weekend to think things through and get more info. I've decided to wait until I'm settled in SC and have my surgery there. It's too much to try to do it now. My son is graduating from high school and I want to be there. Plus I have a ton of packing and people I want to see before I leave. And get this! I believe I wrote about my hemorrhoid surgery last year. Well with all the fiber I was taking for a cleanse ( don't ask me why I do these things!) and iron I'm taking, they're back! I can't, but I can believe it! All that pain getting them removed! What are you gonna do! Suck it up and move on sister! I'm watching Will and Grace, can you tell! lol
Had a nice weekend all and all. Went to a few tag sales. Just to get some air, not to buy. Actually I did pick up a few things. I did get rid of some of my stuff, so I don't feel like I'm collecting more stuff. I need help in sooo many areas! I had my first battle with the sun this season. I was wiped out and in a bit of pain. Had to lay down both days. Not the usually drama associated with it, because it's expected now. No sunscreen no hat. I know that's a no no. I went out and bought a cute hat in Kohls on Sunday! Have to pick some sunscreen. I lost a brand new bottle when I was in SC a few weeks ago.That's all for now! Have an awesome, awesome day!!

Thursday, May 17, 2012

Every day is a challenge

I started writing yesterday for a reason. Now I'm sitting here in tears. It doesn't look like they're going to be able to schedule my surgery for another two weeks. That only leaves me with 3 weeks to recover before I leave. I may be able to squeeze a couple of days, but I don't know if it's enough time. I'm thinking of having the surgery in SC. I don't want to jump the gun, but I also want a plan B. I'm so agravated. I set me off was that the woman scheduling my surgery blamed it on not having my blood work results as of this morning. I told her my rheumatologist that I saw yesterday had them so why didn't she and her office ordered them. I just want to scream.

Just went for a walk....to Dunkin' Donuts!!! Sometimes all you need is a bit of sugar! It will all work out.

Wednesday, May 16, 2012

Feeling the need to write

It hasn't been as long as I thought. I've been needing to come back and write, it just hasn't happened! Life has gotten very complicated again. Everything felt overwhelming. It's not that serious at the moment. lol I've been forced by my body to slow down yet again. Not the lupus this time. I think it's just old age and stress. I know I'm only 41! My at home business was becoming paralysingly overwhelming. We're  moving to a new state (moving south) next month! And now I have uterine fibroids and bleeding, so I'm having a hysterectomy. Never a dull moment! My silver lining is I'm forced to slow down and re-examine my life again. How do I feel? What has changed? Are they good changes? What things do I need to change? Am I really happy with what I'm doing or do I believe it's my only option? Huh

For today, let's start with how do I feel. Needless to say I've felt better. I tire easily. I have joint pain. The headaches are a given, not worth mentioning anymore. That's the physical. That's easy. I'm bleeding and I'm eating meat again. If I stop doing both I'm sure I'd feel much better! How do you move South and not eat meat! I know that's an excuse to indulge. If I'm going to be honest, it's nice to eat meat again. It's the taste. I miss the flavors. I still feel like a stuffed turkey after I eat and I don't feel as well. I'll go back to being a vegetarian. I always do!
Mentally I'm confused and drained. I'm still not sure what I'm supposed to be doing with myself. I'm not a sit still type of person, but I still do too much and become overwhelmed and get sick in some form or fashion. Because of  my limited energy, I don't exercise and take care of myself the way I'm supposed to when I try to "work". I haven't done yoga since I decided not to go to school to be an instructor. Some how I have to find a way to make being healthy a job. Can you make a career out of blogging? If you can, where do I sign up!  Fortunately I'm not depressed. I'm so excited about our move! I can't wait! I'm letting go of situations I have no control over. I've learned to tune out  and say no. I no longer try to find a way to give my kids what they want, but instead encourage them and give them ideas on how to make it work for themselves. If they don't want my advice, then I back off! That was a hard one. It's going well so far!
That's all for now.

Wednesday, February 1, 2012

Out of Touch

           I feel like I'm so out of touch with my lupus. I've been living my life as much as possible as if it doesn't exist. I still facilitate the meetings. I still tell people I have it. But I haven't a clue what's going on in the Lupus world. I feel ashamed. I have an issue and I feel lost. I feel like I only care about what's going on when I'm affected and I'm letting down or jipping the people who attend the meetings ( I started to write my meetings, but they belong to everyone, not me). I know I need to move forward with my life, but does that mean I have to stop being an advocate for lupus and cut all ties? At one time the whole lupus world felt toxic to me and I was having a hard time with organizational lupus if that makes any sense. I felt battered and bruised and disillusioned. I'm stronger now. Do I want to do it again? Do I want to get deeper involved? I know knowledge is power. I know the more informed I am the better I can handle my issues with my disease. I know if I don't take an interest my disease will be ignored by healthcare, the government, and society as a whole. I know, I know, I know. So what exactly is the question or my problem? I think it's because again I don't have a choice. Doing nothing is never an option. So I have no choice. What am I afraid of knowing?
           I can no longer take plaquenil. When I put it in my mouth it has this strong, acrid taste. 20x worse than the taste of prednisone. So bad I refuse to swallow it because I'm scared something's wrong with it. Called one of my docs. Was told to call pharmacy. Called them, was told to take with applesauce. Not doing it. Took it to the pharmacy,they gave me a new script from a brand new bottle. I tried to take it in front of them and they could see the reaction on my face to the taste. They're returning it to the manufacturer. Meanwhile I don't have any medicine to take- sigh. I have a doc appt next week and the week after. Oh and if anyone knows of a support group near Columbia, SC let me know. Will be in the area in the summer and so far not havining any luck locating one. Thanks for listening. I know what I have to do!
Live.Love.Laugh.Enjoy life to the fullest!