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Letter from Shan MsBetty Boop

Posted by bmbrockets on October 5, 2015 at 1:40 PM Comments comments (2)

Dear Friends & Family,

I know all too well that I have become a different person. It is not in my head, it is in my body. I struggle to survive and live well with this chronic pain. Some days I am able to be joyous, other days I can only stay in bed or on the couch and be furious while my body is in screaming pain. All of these days, I am hurting. It is only the degree of pain that differs. My pain can change frequently. I might wake up in the morning feeling alright and by that afternoon be unable to do anything more. It can fluctuate from minute to minute, or it may hit me all at once.

What I need most from you is for you to know that I am not upset with you. Despite my irritation at my new self and my unintended lashing out, what I am really angry at is my pain and inability to perform simple daily life activities. I am so very sad about all those activities we once shared but now frequently must cancel at the last minute. Worse than that is when I have to let go of those special times we treasured. I am not only missing out on these activities and our bonding time, I am feeling overwhelmed with loss and guilt.

The person you care about is still in here. I get buried from constant pain that moves around body. I get frustrated because my brain frequently forgets the simplest of things like returning your phone call. I beat myself up because I have too many days when I can no longer accomplish the most basic of activities; work, cleaning house, driving, shopping, keeping track of planned outings I scheduled, and so much more. I become lost in grieving, filled with shame and guilt.

I want you to know that while I appreciate your desire to offer me a cure, it is my choice if I try to use it. It is still my body and I still understand my needs. I will know if it is something that I feel will help me. Perhaps it will help later on. If you want me to remember the procedure, ask me for my journal and write down the information in my section labeled “medical” using simple but complete information on where to find it later. Then, let it drop away from our conversations. Please don’t push these ideas at me. I get angry because I too am frustrated that there is not “a” cure for me. I am working at my new pace. I really am trying to find methods for my Wellness plan. One that allows me to be myself again, instead of remaining hidden underneath my pain.

My self-esteem is at an all-time low these days. I work as hard as each day allows me to. There are days I am a successful “normal” person and there days when all I feel is the failure. This is not your fault. This is not my fault. This is Fibromyalgia. I am not suffering from depression, but I do have depressed days. Please do your best to understand. If you just can’t tolerate me during these days, know that I understand, that I am not upset and won’t be angry at you later if you need to leave. When I feel sad it helps me more than you know if you perform acts of kindness; send me a humorous email, make me cup of tea or just tuck me into bed. There is no talking me out of this mood, it will only cause more grief to us both. Acts of kindness help me to uncover my esteem as they remind me that “I” am still worth caring about.

I care about you all. I am trying every day. I hope I find these methods soon to bring back at least some of the happy me and decrease the sad, painful me. Try to remain patient and compassionate. I know better than anyone that tolerating this new person can be difficult. Taking the time to understand my invisible syndrome helps us both. If you don’t understand, please feel free to ask me about it on my better days. There is very good information on Fibromyalgia on the internet or in books. It is important to remember that like all chronic illnesses, they have similar symptoms, but just as we are all unique individuals, the predominant features of my chronic pain will also be unique.

With Love, Shan ' Ms Betty Boop'

 

Sent from my iPhone

10/4/2015


FM Walking in Ms Betty Boop's honor

Posted by bmbrockets on May 6, 2015 at 8:50 AM Comments comments (0)

We will be in Stockton and walk in honor of Ms Betty Boop Saturday, May 9, 2015

VIDEO from the FM Awareness Ride & Walk

Posted by bmbrockets on June 6, 2014 at 10:15 AM Comments comments (0)

 

Click on the link for video:

http://vid.us/rvegk7

 

Donation link for Ms Betty Boop

Posted by bmbrockets on June 2, 2014 at 11:20 AM Comments comments (0)

Due to rain we didn't get as much participants as expected. Our fundraiser goal wasn't met so are reaching out for your support.

Thanks in advance!

 

  

      

           Click here to donate: 

       Fundraiser for Ms Betty Boop

 

 

Praying for you MsBetty Boop

Posted by bmbrockets on May 16, 2014 at 9:45 AM Comments comments (0)

We are praying you feel better soon and have a great weekend. Hope your soreness from the fall in your tub heals soon. A week of headaches and face pain is no joke. We love you!

Mother's Day & Fibromyalgia Day is today!

Posted by "Ms.BettyBoop" on May 12, 2014 at 11:35 AM Comments comments (0)

I had a wonderful Mother's Day with my family. I got to eat my steak and potatoe I was craving. Rough night worn out for visiting. I didn't sleep good hurting all over. My face hurts this morning so meds and back to bed. Today is National Fibromyalgia Day May 12th!


 

 

Hello everyone!

Posted by "Ms.BettyBoop" on May 10, 2014 at 11:00 PM Comments comments (0)

Just wanted to thank you all for the prayers and concern on Wednesday when I was rushed to the hospital. That was a rough and scary day. My whole right side was too stiff to move and the migraine pain radiated from my head to my foot on that side. Due to rain my benefit ride and walk was canceled until Saturday May 31, 2014.

Keep up the Fibro Fight!

MsBettyBoop:)

Marsha showed me this video the next day. http://vid.us/f1rhuf



FM Awareness braclets for sale

Posted by bmbrockets on May 8, 2014 at 3:30 PM Comments comments (0)

 

For a donation of only $5.00 you can help the BMB Crew spread awareness!

 

 

Fibro Flare Up

Posted by bmbrockets on May 8, 2014 at 10:00 AM Comments comments (0)

  

May 7, 2014

Shan had to be rushed to the hospital E.R. yesterday by EMS. She had severe migraine pain from her head face and down to her foot on the right side of her body. She couldn't move the right side of her body. She spent most of Wednesday at Thomas Hospital in Fairhope.

TODAY

Shan Jackson pain has eased up but her legs hurt. Itching like crazy from pain meds. She slept about three hours last night. Yeah, that's all. Right side still feels heavy and difficult to walk. She is using her cane today. Still praying her strength. She is still excited about her benefit Saturday! The Bmb Rockets Rockettes aren't letting her down. So rain or shine the Fibromyalgia Awareness day will go on. Please so your support for Shan and everyone suffering with FM & Lupus.

The local church in Stockton will be posted up at Doug's Place selling hot plates. Big Chad will be on the grill. The after party BYOB at 8 pm with DJ MsOnDaGo. See you soon!

 

This event is for you Shan and all you do!

Posted by bmbrockets on May 6, 2014 at 2:30 PM Comments comments (0)

 

WE LOVE YOU MS BETTY BOOP!

I Feel Like a Sandcastle

Posted by "Ms.BettyBoop" on April 28, 2014 at 10:25 AM Comments comments (0)

I FEEL LIKE A SANDCASTLE TODAY. WENT OUT OVER THE WEEKEND TO PROMOTE OUR FM AWARENESS RIDE & WALK

AND FELLOWSHIP. LAST NIGHT AND TODAY MY RIGHT KNEE IS SWOLLEN AND IN SEVERE PAIN. GONNA BE A BED DAY.


GOT THESE NICE BRACELETS FROM MY COUSIN. SHE WILL BE SELLING THEM AT MY EVENT ON MAY 10TH.


 

Benefit for me!

Posted by "Ms.BettyBoop" on April 23, 2014 at 3:45 PM Comments comments (0)

This brought tears to my eyes but really lifted my spirits that they want to help me financially and help me

 make people aware of Fibromyalgia.


 

30 Things About My Invisible Illness You May Not Know

Posted by "Ms.BettyBoop" on April 23, 2014 at 3:40 PM Comments comments (0)

30 Things About My Invisible Illness You May Not Know

 

1. The illness I live with is: Fibromyalgia

 

2. I was diagnosed with it in the year: Fibro: 2004

 

3. But I had symptoms since: 2000

 

4. The biggest adjustment I’ve had to make is: Stopping when my body tells me to.

 

5. Most people assume: I live with a "normal" amount of pain and that I should just deal with it

 

6. The hardest part about mornings are: Everything-- I hate mornings, my body is ridiculously stiff

 

7. My favorite medical TV show is: Dr. Oz

 

8. A gadget I couldn’t live without is: my iPhone 

 

9. The hardest part about nights are: Not being able to sleep, restless legs, and back pain.

 

10. Each day I take _meds. 16 meds

 

11. Regarding alternative treatments I: am open to them and welcome any suggestions

 

12. If I had to choose between an invisible illness or visible I would choose: Is neither an option?

 

13. Regarding working and career: I haven't work since Jan. 2012

 

14. People would be surprised to know: That I really struggle with the emotional and mental aspects of being in pain all the time

 

15. The hardest thing to accept about my new reality has been: Not able to spend as much time with my family 

 

16. Something I never thought I could do with my illness that I did was: To tolerate as much pain as I do!

 

17. The commercials about my illness: Makes me feel more depressed than I am.

 

18. Something I really miss doing since I was diagnosed is: Wearing my Heels and riding my motorcycle! 

 

19. It was really hard to have to give up: My normal life. Being Shan!!

 

20. A new hobby I have taken up since my diagnosis is: Reading more. 

 

21. If I could have one day of feeling normal again I would: Take my family to the Virgin Islands or Jamaica.


 

22. My illness has taught me: That I am not alone thru this Invisible Disease.  

 

23. Want to know a secret? I hate singing!! 

 

24. But I love it when people: Really wants to know about my illness. Instead of thinking I should only be in that much pain everyday or all day.

 

25. My favorite motto, scripture, quote that gets me through tough times is: I endure this much pain, because one day someone will find a Cure! 

 

26. When someone is diagnosed I’d like to tell them: You are not alone, we all will be Visible one day!

 

27. Something that has surprised me about living with an illness is: How much wiser I am from going through this. Now, I can help others.

 

28. The nicest thing someone did for me when I wasn’t feeling well was: Rubbed me and then said, I wish I had a Cure for you right now. 

 

29. I’m involved with FM Awareness: We need to become visible!

 

30. The fact that you read this list makes me feel: That you really care to know about Fibromyalgia.

 

 

Welcome

Posted by "Ms.BettyBoop" on April 23, 2014 at 3:35 PM Comments comments (0)

Hello my name is Shan aka Ms Betty Boop,

This blog is my way of bringing awareness to the diseases and medical conditions that have no cure. I suffer from Fibromyalgia, Chronic Migraines and Rheumatoid Arthritis. Finding a cure is important to me.

 

 



BMB Cure Fibromyalgia bracelet

 I will be selling BMB Cure Fibromyalgia bracelets soon. I only ask for a $5.00 donation. By wearing a BMB Cure Fibromyalgia bracelet, you or a loved one can show your support. Together we can all hope for a cure! For every bracelet sold I can help support my self and my two girls. I also want to help others in my community diagnosed with FM.

 


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