Tuesday, February 28, 2017

Rare Disease Day 2017!

                                              So Today is rare Disease Day!
Why is this subject Close to my heart? Well, as some Of you know, I have a few Rare Diseases. I have Adult-On Set Still's disease or AOSD and as a Child, I had Systemic onset juvenile idiopathic arthritis Or sJIA. It's still Hard to see myself with any disease.
When I was young, I knew something was wrong.
Most girls my age did tea parties, but I wanted to stay in bed or under the covers, My parents just thought I was playing around or being lazy. I did play a little bit as a child. Later I played some sports as I got older, but I was always in and out of the Doctors and Hospitals. I don't even remember my childhood without thinking of a Doctors office, from 7 years to 13 years. then again from 16-20. Finally! I am only at Doctors not so many hospitals since then. When I first got diagnosed with Still's disease My Doctor here in town weren't sure. So then I did some research and but then I found out in Houston, which was three hours away.  I finally found a Still's disease specialist and we saw him, like after six months of trying to see him. He confirmed it and called my Doctor here and they talked it. He handed what he thought about it to my Doctor here So he could take care of me, He said there is no doubt about it, You have it. He said that it's rare in people that are Hispanic.  But there is a case of one such young woman in 1995 changed the whole thing. We should be very grateful because of her case and information. I was able to get diagnosed but it must be because I might have some Spanish or European Blood, That's usually where it comes from. I got diagnosed with Still's disease around 2010.
Now let's talk about my diseases that I have. First they are NO LONGER On the Rare Disease List. I just found this out recently. It's good news. Because I also have systemic lupus erythematosus, it use to be rare but it's becoming very common. I think they had to remove it and the same for Fibromyalgia. As a Child I had amplified musculoskeletal pain syndrome or AMPS.
I can't seem to find it on any list, It was rare but again,l can't find it and irritable bowel syndrome or IBS; Sjogren's syndrome is still up in the air. It's just crazy to think all these disease are now common. If they are on the list, PLEASE Correct me. I looked for hours,I couldn't find them. In a way, I am glad I have common diseases so now Doctors know more how to treat them. But there is another concern. And that is that I hope people aren't getting misdiagnosed. But then that's why we have such terrific doctors.  I am grateful that my Doctor looks and checks everything out and Makes sure my levels are doing okay.
I am Very Happy to be celebrating this Wonderful day with Dear friends and my family.
My Friends who are all Fighting Their Illnesses,Sarah,Alana,Kaitlin,Tiffany,Lisa,Maple, Eman,Who is so Funny! we don't talk a lot but she makes me laugh & ALL My friends who fight likfe Crazt and NEVER Give Up!!
Lastly someone Who made me go out and Live my Life, she's always behind me, I wanted to give up but her words stayed with me, Thank You my Angel, My Dear Friend, Laura Who Passed but Changed My Life Who taught me Still's Disease is not a death Sentence. she Told me once, If You have a Chance at Life take it. Still's Took her life but Her Memory Lives with me everyday.

                                                              Thank you for Reading!

Sunday, February 26, 2017

Hello! It's Me.

Hello ALL!
I know it's been a while.
Kinda Crazy few years! I'm slowly getting back into everything again. So much has Happened a Lot. more stories later.
I grew up a lot. It's been maybe 4 years!!! where has the time gone? I will be updating More hopefully!
To be Honest I have been trying to live like I'm not sick. I'm OVER THAT! It's Like Pamela, you are Sick but I see myself as normal but ask anyone who knows me. I am NOT Normal.
so my Cousin and I were having a Conversation.
she's Eight years old. She is one of my best friends. She's Young but I asked her something, To get a Truly Honest Answer. You may say "Well, Pamela she's eight. But kids are VERY Honest." I asked her this and it was in Winter 2015. I had been a though a lot that year. I asked Her, "Do You think I'm Normal?" She looks at me Up and down. She says, "Pamela No, You're my cousin, But I don't lie. You're not. But I like that about you." Then She went on How She heard, how I was in the hospital a lot as a kid. How my extended Family says I don't go out, and that they never worry that I will get into Trouble, I started crying because my family thought so well of me.
She goes "what's wrong?" I said "No, Just happy," she smiled and goes on, She said "well, your always at the Doctors and you eat fast food."  HAHA! (Do They Know me or what?) "And you're always at home. you don't go to College or school," she said. I did graduate from High school tho.  I look at her, and said to her, "You know Anyone can make anything Out of themselves without going to College but YOU Need to go."  She laughs and says, "I WILL! even though, I hate school."  So then the conversation kinda ended because she started painting.
But a lot of things stuck out to me.
My family knew it but they never worry about me besides my health. Everyone knows, My Big Mexican family Does Understand.
 I was Blessed with a family that Truly cares, they aren't perfect but for them, I am. That Conversation changed The end of 2015. I went into that year happy Because I finally say what My family saw about me and Yes, I'm not Normal.
I had Doctors from all over the state tell me. I am a rare person And That's okay.
Now I see my family knows it and My Friends Try but everyone is busy with College,Work, Marriage and there I am. I am Very happy to say, I finally Have Really Good Spoonie friends! and Making more friends who are wonderful People and CARE! When I don't feel good. they send me happy stuff or just post photos. I am Very grateful for them.
so 2016 was a really good year, Even if some things don't work out, I learned from them. But Hopeful everything goes well!
This Tuesday is Rare disease Day! WHOO HOOO!!
so I am Going to have a Post coming up on Tuesday! So look Out for that.
This is my Rambling for the day. See you on Tuesday!

Tuesday, June 4, 2013

How I have Been? & Update!

                                                               Hi Everyone!
I know.. I haven't updated in awhile! I have been so busy with my health And my other blog, I really hope, I can update more this Summer!!
Let's Start in
Jan/Feb, My Health was Good, I just kept getting colds & more Shots In My Back & Hips from Jerry Aka a Hero with Shots! & seeing my Rhumy Dr once a Month! OH & I have Carpel Tunnel In BOTH arms! & it's worse this time! Jerry Put Shots there! ( He saved My arms) since It was still cold Here in Texas.
March/April, I moved to a New Family Dr, She did a full work Up & Sent My blood work to My Rhumy, I see Rhumy. "Pamela?":My Rhumy. ME:"Yes?"
"Do You know how Low Your Vitamin D Is?" said My Rhumy?
 "Ummmm... No,Sir?" It's a 6!
Mom:"WHAT!! Why is it so Low while looking right at her Great & Wonderful First Born Child?" Me:"umm.. I don't know why! Looking at Mommy"
My Rhumy: "What Happened to The Gummy Vitamins?" ME: Ummm... I had to stop Them?" Rhumy:"Why did You stop Them?" ME: "Because I was getting Bloody Mouth sores" Rhumy: Why Didn't You say Anything?" ME:"Ummm, because I thought you knew, from My Medicine list"
Rhumy: "Ok, Let's send You to Your Allergy Dr who was helping you with it & Ask Him to Try Vitamin D-3 & Vitamin D-1, Ok?" ME: "Yes Sir.."
Mom & I leave after Getting Shots with Jerry. Mom:" Pamela, How did it get so low?" ME: "Mom.. Because it was Winter! You know I don't go out as much & no sun! I stand near a White wall, I'll get lost in it!" Mom: "trying not to laugh! that's true.."
Off to Dr V, aka My Allergy Dr.
There...Dr V: "Hi Pamela, How are you? You haven't been here in 3 years! How have you been?" Me: "Ok, well.. No, not really, & I tel' him the story but you know.. in a shorter version." Dr V: "I'll Be right back." He comes back. Dr V:"he doesn't say much, we just watch Him." He's getting Vitamin D-3 & does it on his arm, Then Mine & see How My sick will act with this.. we wait. Dr V: Ok. I'll be back in 5 Mins" Mom & I sit there.. reading Iphones.. Dr V comes back. It's been 5 mins. OK. Dr V: "your arm seems Like you're Ok with it, Now, Let's try getting the Liquid & try that for right now, Ok? Then he brings the Liquid.. he brings a Liquid Pill & puts a shot needle in it & Squeezes it, into his Month & Tell me to do the same thing" so I do it.. & Dr V: Stay here for a Hour & see how Your body acts, If Your Ok, Then you can take this Vitamin D-3, For your Vitamin D! & It should help your blood Levels & Then He says "Do You have anything else you want to talk about or ask me?" ME: "OK. I was gluten free a couple of years ago & It was helping.. & Now I see when I eat a Sandwich  My tummy hurts a lot & then I feel so bad.. Dr V: "Ok. Go Gluten Free & It seems You may have "non celiac gluten sensitivity" & if It helps,Keep doing it!  & It any other Drs Don't like it.. well, It's Your Body." & keep staying away from foods & medicines that makes you feel sick."  ME: "YES SIR!" So before I go gluten free I need to talk to Dr Huffy about it.
Mom & I were so HAPPY! about The Vitamin D-3!! I feel so much better!
This past Month was Arthritis Month! For Still's Disease And Rheumatoid arthritis. I wanted to Blog so much! but I keep getting flares in my arms from my carpal tunnel! & I was very busy with life things! & May was Great, My cousins came to visit & it was also my little cousin's birthdays & Health wise.. I was doing ok.. even though in Mid May I got very sick with a Cold/Sinus Virus that took me 2 weeks to get better! but then My pain came back even more painful and I was having a flare then I found My shots Man Jerry was out of town, But at the end of May, I was doing a lot better just carpal tunnel keeps bothering me though!
Present Or June.. I was been feeling ok.. I just keep getting Really bad pain flare ups & I have been researching Gluten & all my diseases & I found out more things I need to talk about with My dr. I'm seeing him soon! so I'll have a post on that hopefully soon!  &  It's June 4th & today is my little cousin's birthday & my Birthday in Sunday & My Parents anniversary is on Sunday too! & the Spurs on in the NBA Finals & I'm watching The French Open like a Crazy person. I love it! Only thing is Soccer of Futball season is over..so Sad. I'll be posting more in June! & I hope to be going to the Beach this summer with tons of Sunblock! for Sure! :)

                                                           Missed Y'all
                                                            Xoxo Pam