Trying to get back to some normalcy. I’ve cancelled and delayed my own appointments to get through our upcoming week. Husband has Sacramento Heart (His heart specialist) on Monday, PT on Tuesday, Our son Kurtis’ doctor appointment is on Tuesday also, Our daughter Kharisma’s appointment is Wednesday and our son appointment at Shriner’s Children Hospital is on Thursday. Kharisma finally received 2 of her referrals, but is still waiting on the others. So we still know little. Just moving forward in the process. Still waiting for the repeat biopsies of the first.

Even though I have been on break, I’ve also been busy learning about disease I had never even heard of. That will be for another post whether or not confirmed in my own child. Just to make aware that it exists. I will raise awareness for it even if by shares of info. I am not sure if I mentioned before, but only approximately 20 are diagnosed with it each year in the U.S. that’s how rare. I feel like there is more hope if I don’t mumble its name. It could still turn out to be something else.

I have been falling out on a regular basis. (sleeping). Usual for me due to the Narcolepsy, but a symptom with it has been worsening. My eGFR did drop another 10 points, so I’m keeping my kidney’s watered. Always have a bottle or 2 of water with me.

I do have a few things I am still doing for Pain Awareness Month, a couple of shares really, but important for those people. I won’t be cancelling those.

My time on Social Media may continue to be limited, may stay more in the background. You know I’ll pop on to share music and listen to my friends though too from time to time.

Next weekend my Grandson will start learning more about CRPS/RSD beyond me. Text learning, reading, photos, video’s etc. His mom (Kharisma) encouraged me to start him on the reading now. De’Mantai is 8 now. After 10 straight honor rolls, he’s ready!

On the brighter side my baby girl, 12 mo and 4 days younger than her sister just bought her first home with her other half. And that’s really something to smile about. Both were in the Army she was never deployed due to an injury, honorable discharge, he did 2 tours.  Was so proud to see my daughter graduate boot-camp and AIT, but am also so glad she never went to Afghanistan. So happy for them, they move in next month.

Still hoping the bone in my leg doesn’t snap, not a lot docs can do anymore. I have a 4 prong cane, 4 or 5 traditional, a walking stick, a walker with a seat and breaks, the wheels (wheelchair), but I rather stay inside than go out and use them. Doesn’t really make sense, I know. My tail bone keep clicking, dislocating, popping back into place, or close to it randomly. I’ll get this figured out when I can. The situation with my arm buzzing and the feeling of stimulation in it eased with a click of my spine which was about 2 weeks after my SCS battery replacement, by the 3rd week gone. So I’m good again there.That was so weird!  I haven’t gone back to Neurologist yet for the full results of EMG.

All I know is I’m 14 years into my CRPS and related issues and I’ll still have it tomorrow, so putting my appointments on hold for my family is no worries.

Went to bed last night at about 10:00 p.m. Woke up about 3:45 a.m and made coffee. When I stood in front of the pot to do my usual which is snatch the strong brew out before it completes making, I breathed in the aroma.

I closed my eyes and smiled to myself. It’s a brand new day!

Yep, I’m still on that break! I try to divert my mind by sharing, conversation, a little friendly debate, or simply just being with my family. Let me extend that by saying I’ve really been giving my pillow some head and my mattress some ass.. ( Some of ya’ll got naughty minds) haha!

But I will never tell!

I shake out my long dark wild locks and raise my dark almond shaped eyes to the skies and pray..

Get down on my knee’s with CRPS, don’t ever doubt that I wouldn’t.

Don’t ever doubt that I wouldn’t participate in an ASL Ice Challenge just because I have CRPS.

I did!

My life is meant to show other’s they can survive. If I fail because someone else tells them otherwise. Then I’ll have to either sit back and listen or intervene.

You make your break your own life.

If you think that challenge didn’t hurt me or hurt me like it would have you? You need to step back..

I’m not the same as most of you. I never have been. I was never born to be. I am a half of myself and I live as both of us.

Wanna know a secret?

I almost wasn’t Twinkle..  I could have been Kimberly…

Who is who… we are we…

I’ve lost 3 babies to my twin…

I need my daughter to stay with me…

O Saint Peregrine, you who have been called “The Wonder-Worker” because of the numerous miracles which you have obtained from God for those who have had recourse to you, who for so many years bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more: you who were favored with the vision of Jesus coming down from His Cross to heal your affliction, ask of God and Our Lady the cure of these sick persons whom we entrust to you (names of those for whom you are praying, including yourself if need be). Aided in this way by your powerful intercession, we shall sing praise to God for His great goodness and mercy.
Amen.

I am not Catholic, but I took communion at my Moms marriage to her husband Don. I did this as respect and as a form of commitment to God in all forms. I was baptized Lutheran.

Don’t ever presume you know me based on religion and don’t ever dummy me down based on education..

Sometimes you have to look at all of it…    all of it and leave your heart aside.

I still don’t have those results of my first baby girl. I know what they said it may be, but until I know for sure..        (all I need is the air that I breathe and to to love them)

One thing I do know and I have known most of my life, we look for someone or something to punish when our hearts are broken. When the medical field lets us down, fails us, our children down, when other’s kill what is ours. That which should remain in our living arms.

There becomes rage to prove a point.

Let go.

As I face it now, once again.. let go.

Let it go.

~T

The last week has been heavy. After 5 days my daughter came home from UCD Medical Center last evening. I have posted a bit, but we haven’t posted any specifics. We’ve been told she may have a rare form of cancer. She’s 26 years old. When she came out from her biopsies we were handed a piece of paper with the expected diagnosis written down based on the cells appearance. I won’t say it because I cannot, plus we don’t know for certain yet. There is still hope. An instant mama’s cry echoed from my vocal chords and I nearly hit the floor. If it hadn’t been for my cousin and husband I would have. My daughters recovery nurse came over and hugged me tightly and whispered “be strong”. I do have to be strong for my girl. We were suppose to have the preliminary results of the biopsies yesterday, but we didn’t get them. We will have them next week. My faith in God is all that is holding me together. My husband is keeping it inside and I am falling apart all because of my own illnesses and secondary depression as a result of CRPS. Now it’s so much worse. On the way to see our daughter a couple of days ago, I couldn’t stop crying, my sun glasses were on, my eyes which are already an almond slanted shape were so tiny they looked closed. I asked him if he could get to my doctor from where we were as we had just passed the street. He went around and took me. They seen me immediately without an appointment. Due to the flare up in my legs and the refusal to use my wheelchair to go back and forth, I had my Cymbalta increased. All I need is to be better for my family. All I need is to get me better, so I can be better for them. My son goes to Shriner’s next month, my EMG is on the 2nd, my husbands ongoing heart, diabetes, tear in his shoulder and now something I can’t face. Life is a learning experience. All of it is. With all that I face, I learn. That’s why I’ve been blessed to help others.

I’ve walked so many shoes, but this one…   nope nope nope.

I’ve taken time of from POPF, they immediately told me to take care of my family. I’m taking time off from my Group and related activities.

I’ll be around. Perhaps posting or sharing as a diversion.  In the meantime, I’ll be using my time to read and catch up on other issues.

There’s still hope and I’m praying. If you don’t pray or believe in the same, I respect that, maybe you can hope for us instead… ~T

I will never tell anyone who I speak of but He is my best friend. He has a part of my heart that no one will ever have or take from me. He has my unconditional confidence. He has it over my own family and my closest friends. I grew up with him, we went to high school together, lived together. I would absolutely bounce my own family for him! I have memories in photos,  heart and mind, no one else has.

If you don’t understand the title, you don’t need to.

I miss him!

I love you M forever my family, my brother.

~Twinkle