It has been nearly two years since I started the Rituxan infusions, my quality of life increasing with each one. When I first started the infusions my vectra score was a 58. Which meant my disease activity was severe. My most recent blood work shows my vectra score at a 3. Down 55 points. Yes my teeth are paying the price and a bit of hair loss. When I started this journey I was pushing about 360 and on outings sometimes needed a wheelchair or cane. I eventually had gastric bypass, but the weight loss did not help my jont pain. I had tried all sorts of injections, the newest pills. Nothing worked. Then I started the Rituximab infusions. Game changer. I can now play with my grankids unlike with my children, I sat and watched. I am now about 195 and feel better than I have in years. There are side effects, like my teeth. But I will take it any day over the pain and fatigue I felt for almost 18 years. The best advice I can give is, if you think your treatment plans are not working as you would like. Change it, talk to your doctor. If you aren’t happy with your results, look at other options. I hope and pray that you find what works for you and whatever ails you. Life is to short to live in pain.
Tag: blessed
Thankful!
What a blessing it is to be alive. To love and be loved..
Young Love
Those lips and how they made me feel,
Never had anything felt so real,
Thoughts of you pour like rain.
I’d sell my soul to taste them once again.
I visit you in my dreams.
We, you’ve forgotten it seems.
I don’t fight them anymore,
Are you just as you were before,
I prayed one day I’d be your wife,
And with you i would spend my life,
Together we had been.
Our love destined not to win.
It lives on in my memories,
I miss you when no one sees.
Jill L. Ware
Be You!
Put on your best smile, go that extra mile.
Be courteous and nice, don’t ever think twice.
Lift up one another, be your neighbors brother.
Love with all your might, don’t give up without a fight.
Ask for nothing in return, be the example so they can learn.
Be you, let your light shine through.
Be the spark that leads them from the dark.
Most of all, always be you!
Jill L. Ware
The Calm After The Storm
I really hate that when you are in the chaos of bipolar sometimes you don’t even know it. Taking some time for me at the lake. The rest is much needed from about three weeks of mania.
Take Care Of You! No One Else Will.
Was My Junk Inherited or A Consequence of My Traumas?
I do believe that a majority of my junk was inherited.. And that life traumas made the diseases progress.
After my parents divorced as a young child I begin stuttering and talking too fast. No amount of speech therapy fixed it. I still do it in anxious situations.
It is amazing how dysfunctional your childhood is, but you don’t realize it until adulthood.
I have a brother that became fanatically religious when I was a child. He and the other brother were in charge of taking care of my younger sister and I while our mother work to support us. NEVER do this people. NOT a good idea.
The religious brother was only trying to do what he saw in God’s eyes was right. But being locked in the closet until you memorize 25 Bible verses was quite ridiculous. He later in his early 20s was diagnosed as paranoid schizophrenic. And he is a very kind and loving soul.
The other brother on the other hand was the complete opposite. I remember a time my eldest brother stomped the others stereo because of the devil music he was playing and chased him through the house to lay hands on him to cast the demons out of him. Finally, The younger brother pretended to be possessed and scared the other terribly. Yep, us girls did not have a fighting chance.
So, eventually the younger of the two boys decided it would be a good idea to practice on his sisters for a girl he was wanting to have sex with. 40 years later I can hear those words like it was yesterday. Every word, every demand, every threat. Until a few years ago I had no idea he practiced differently with my sister.
We never talked about it. my friend in the fifth grade was the only one I ever told. Years went by and coincidentally her daughter and my brothers stepdaughter became friends. Which they thought was leading to a sleepover. NOT. My friend from grade school told her daughter. My brother and I finally talked about it. He has absolutely no recollection whatsoever. It always made me feel better to make an excuse like, “It was drugs or alcohol that made him do it”. Then he informed me he didn’t do drugs didn’t tell me he was sorry he just doesn’t remember. I Do! Every single day of my grown-up life I can picture it like it was yesterday.
I am grateful for the few followers I have. But it’s nice to have a place to vent about this baggage I’ve been caring around for years. And this is just a few of the screwed up things that happened to me as a child. Just wait until I get to the adult stories!
A Good Day!
I put together a puzzle today. It seems to help when I’m struggling mentally. My problem is that my Lithium and Wellbutrin slow me down. Sometimes life gets so busy I can’t keep up, then I intentionally stop my psychiatric medications so I can not be so run down. Then first two weeks are great, then slowly I start getting nervous in cars as passenger. Next I begin thinking everything everyone says to me is meant as sarcasm. Finally the people around catch my wrath.
Most the time I’m considered a very sweet lady. But only my loved ones get to see the nasty side of me. That’s a lie. Over the years I’m sure there were a few customers I let have it.
The day ended great. My granddaughter Anaya stayed over. And I’m keeping her up past her bedtime.
Hopefully tomorrow I have a bit more energy. A little bit today I had to force myself to move.
I’m a terrible sister
My sister and I both suffer from bpd and bipolar. Anxiety , depression and whatever else you want to throw in there. For several years now I’ve had to be stronger for her. Handle her with kid gloves you might say. We both have suicidal tendencies. I have attempted twice.
She is my best friend in the whole world. I’ve had a few bad days this week. So she was pointing out to me my bad behavior and my words were,”You have got to be fucking kidding me, you can go 8 months in a row all fucked up and no one says a word because you might go kill yourself and I have a bad two days and you are on me like a fly on shit.”.
And thank God the camera was off at the shop so she couldn’t replay every word I said over and over, she would have killed herself. Was what I said true? Yes! Did I know it would hurt her? Yes! Do I love her? Yes!
I hate these fucking diseases. I told myself over and over in my head to not say anything, there was no stopping me. I was hurting so I wanted to hurt her. She had been doing better, I’m afraid that this might make her progress go backwards. She will play what I said in her head until it makes her feel like a waste of space or a complete failure. How do I know this? We have the same disease. I would do the same thing. All I know is my sister and I have not been over 5 miles away from each other our entire lives. We survived some terrible experiences as children together. We even get sick when either of us goes on trips away from the other. What the hell is wrong with me?
Cooling off in the pool with grandpa
After a very hot hike grandpa brought us to the pool to cool down. He really does spoil us girls.
Our Roses Were Yellow 
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