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Genetics update: I DO NOT HAVE EDS; I Have Marfan Syndrome! οΏΌ

Β Talk about turning my world upside down!! LMAO..30 years thinking I had one diagnosis ( Ehlers Danlos syndrome).. Come to find out it’s a different connective tissue disorder, Marfan syndrome. LMAO 🀣🀣

My life is never dull.. it’s a roller coaster.. another loop de loop, turn in my life lol πŸ˜†
I just got the diagnosis from the genetic testing, today!!! I am still in shock..30 years of lies! LMAO.

https://drive.google.com/file/d/1QC4vfqgw-UddjMb-HZU29fi16j9oWARK/view

#Medical, ADA, Adult, adulthood, Adulting, Advocacy, At home, Athome, Autobiography, Back Pain, BackPain, birthday, birthdays, Chronic illness, Chronic Pain, Chronicillness, College, College student with disabilities, College with Disabilities, CollegeStudentwithDisabilities, CollegeWithDisabilities, Confidence, Connective Tissue, ConnectiveTissue, Deformity, Differently Abled, DifferentlyAbled, disabilities, disabled, Disableds, disorder, disorders, dreams, EDS, Ehlers Danlos, Ehlers Danlos Syndrome, EhlersDanlos, EhlersDanlosSyndrome, Family, Fun, Handicap, Handicapped, Handicaps, Happiness, Health, HealthCare, illness, Inspiration, inspirational, Joint Pain, JointPain, Joints, Joints Pain, Joy, KyphoScoliosis, Kyphosis, Life, Louisiana, Motivational, Pain, Physical Disabilities, physical Handicap, physical handicaps, physically handicapped, rare, rare disabilities, rare disorders, rareDisabilities, rareDisorders, Special Needs, Spinal Deformity, Spinal Fusions, SpinalDeformity, SpinalFusions, Spine, Spine Pain, SpinePain, Spoonie, Spoonies, Syndromes, UnBreakable, Uncategorized, wellness, Youtube, Zebra, Zebras

Life update: 30th Birthday!!!

 So yesterday, May 5, I officially turned 30 years old! Gosh how am I already 30?! time flies! 

We really didn’t do much to celebrate it. The weather was rather ugly outside, my mom’s knee was bugging her, Bae (David) was working, etc. My parents got a sign and a banner to put in the front yard, Bae (David) came after work, Dad made one of my favorite meals (it’s called “greasy chicken”- basically a chicken in a gravy type thing..It is really good and yummy!) 

Earlier in the week, Mom and Dad had invested in a really fancy office chair for me since I do a lot of computer stuff and sitting at a desk; it was highly recommended for people with Scoliosis and back problems for good posture. They also got me some Fine-Tip ink pens in various colors since I do a lot of journaling and note-taking while doing my daily religious readings and such. Those surprises were before my birthday: For my birthday, They invested in a Cricut Explore Air 2 in my birthstone color: Emerald! The day before my birthday, one of my best friends, one I been friends with since we were in preschool together, came to drop off a 30 wine glass and a “cheers to 30 years” purple shirt for me to wear on my birthday (which I did wear, and it’s the shirt I am photographed in the slideshow video down below).

Today, May 6, Mom was feeling better so she made up the fact she couldn’t make me a special birthday breakfast by going to Waffle House while I was asleep and ordering what we usually split together- The all-star breakfast: Pecan Waffle, Country Ham, Hashbrowns, etc. and brought it home for me! I am so spoiled, but I am the youngest child and I have had a rough life, so I deserve a little spoiling every now and then LMAO! 

This weekend, our local performing theatre is doing a talent show- so we will go to that, maybe go do a little shopping and go get my “birthday freebies,” from stores and stuff I have rewards memberships with. Don’t know, Time will tell what we actually do; Having disabilities kill my stamina levels so I gotta just see how I am feeling and “play by ear,” but oh how I wish I could “be Normal,” and have normal stamina levels and such, but eh, Tis my life- can’t change it so might as well accept it. *shrugs* 

But anyway, Overwell, it was a pretty good birthday. πŸ™‚Β 

#Medical, ADA, Adult, adulthood, Adulting, Advocacy, Autobiography, Back Pain, BackPain, Chronic illness, Chronic Pain, Chronicillness, College, College student with disabilities, College with Disabilities, CollegeStudentwithDisabilities, CollegeWithDisabilities, Connective Tissue, ConnectiveTissue, Deformity, Differently Abled, DifferentlyAbled, disabilities, disabled, Disableds, diseases, disorder, disorders, doctor, Doctors, drs, EDS, Ehlers Danlos, Ehlers Danlos Syndrome, EhlersDanlos, EhlersDanlosSyndrome, Fall, Fall Semester, Fun, future, genes, geneticist, genetics, genetics doctor, genetics dr, Handicap, Handicapped, Handicaps, Happiness, Health, HealthCare, Humanity, Humans, Humor, illness, Inspiration, inspirational, Joint Pain, JointPain, Joints, Joints Pain, KyphoScoliosis, Kyphosis, Life, Louisiana, medical, medication, medications, memoir, Motivational, Pain, Pain Doctors, Pain management, pain meds, PainDoctors, PainManagement, Physical Disabilities, physical Handicap, physical handicaps, physically handicapped, rare, rare disabilities, rare disorders, rareDisabilities, rareDisorders, Scoliosis, sickness, Special Needs, Spinal Deformity, Spinal Fusions, SpinalDeformity, SpinalFusions, Spine, Spine Pain, SpinePain, Spoonie, Spoonies, Stamina, students with disabilities, StudentsWithDisabilities, Syndromes, UnBreakable, Uncategorized, writing, Zebra, Zebras

Life Update: Resuming College, Registering Fall 2021 classes

Based on my current stamina level, I decided to only resume college part-time: 9 credit hours-3 classes scheduled: I will be taking Eng359:Advanced English writing for social sciences class (Monday and Wed. 1-2:15 p.m.), Socio364: Juvenile Delinquency (Because I feel like that would be interesting- on Mon, Wed., and Friday 10 a.m.-10:50 a.m.), and CMCN307: Communication in leadership class (online). I still have many many many choices in classes I want to eventually take but they were either full or not available this semester. I am just so eager to start back in the fall and I hope I don’t get burnt out, able to keep up and try my best and get something out of these classes πŸ™‚ I’m very optimistic and I think I chose some pretty good classes. Let’s see how long that optimism stays. πŸ˜› haha.

#Medical, ADA, Adult, adulthood, Adulting, Advocacy, Autobiography, Autumn, Back Pain, BackPain, Chronic illness, Chronic Pain, Chronicillness, collagen, College, College student with disabilities, College with Disabilities, CollegeStudentwithDisabilities, CollegeWithDisabilities, Connective Tissue, ConnectiveTissue, Deformity, Differently Abled, DifferentlyAbled, disabilities, disabled, Disableds, diseases, disorder, disorders, doctor, Doctors, dreams, drs, EDS, Ehlers Danlos, Ehlers Danlos Syndrome, EhlersDanlos, EhlersDanlosSyndrome, ENergy, Facing Fears, Fall, Fall Semester, Family, Friends, Fun, future, genes, genetics, Handicap, Handicapped, Handicaps, Happiness, Health, HealthCare, heroes, Humanity, Humans, illness, Inspiration, inspirational, Joint Pain, JointPain, Joints, Joints Pain, Joy, KyphoScoliosis, Kyphosis, Life, Louisiana, medical, medication, medications, memoir, Motivational, Originality, Pain, Pain Doctors, Pain management, pain meds, PainDoctors, PainManagement, Parents of Disabilities, Physical Disabilities, physical Handicap, physical handicaps, physically handicapped, rare, rare disabilities, rare disorders, rareDisabilities, rareDisorders, Scary, School, Scoliosis, sick, sickness, society, Special Needs, Spinal Deformity, Spinal Fusions, SpinalDeformity, SpinalFusions, Spine, Spine Pain, SpinePain, Spoonie, Spoonies, Stamina, story, students with disabilities, StudentsWithDisabilities, superheros, support, Syndromes, UnBreakable, Uncategorized, Zebra, Zebras

Life Update: Fall 2021 Resuming College, Close to Bachelors Degree!!!!

What girl is resuming college in the fall semester and only 28 credits from bachelor’s degree in general studies with a concentration in behavioral studies…? πŸ™‹β€β™€οΈπŸ™‹β€β™€οΈπŸ™‹β€β™€οΈ this girl, right here! Woot woot.

However, being I have 28 hours left: All I have left is an Advanced English writing class, some general electives, and enrichment (concentration) classes. While I think if I do 2 semesters of full time-each one will be about 15 credit hours, (which is about 5 classes if its a 3-day class)- more if its a 2-day class.) that will be 2 extra credit hours in the end run, but then I will be done by end of next spring if I am able to keep my grades up.

However, I been out for a while and I get stressed and overwhelmed easily, so maybe Instead of setting myself up to fail and burned out, I only do a few part-time, even though I am thinking these will be “Easy” classes.

I don’t know what the workloads entail for these classes. Plus my stamina isn’t great right now. So looking at my energy level now, it’d probably be safest to do part-time in the fall, and then in spring, I can work my way up to more credit hours. (although maybe not, since spring starts in January and that’s still cold…unless it’s mostly online during that time. I don’t know. Time will tell.) Any advice is greatly appreciated. πŸ™‚

Many people on my Facebook suggested only taking 1-2 other classes besides the advanced writing class because for most people, advanced writing classes take up a lot of time.

The next biggest issues while registering for classes:

1.) When going to the course description, some descriptions only say “will have an additional cost,” It doesn’t say anything about what the course is about or the workload expectancy: Like how is a student supposed to figure out if that class is a good fit with another class they are taking? UGH!

2.) Most of the classes I am looking at either is full to capacity, not a good fit with the advanced writing class, and some just aren’t available/an option for this semester.

So right now, the only class I can schedule is advanced writing: Could that be a sign from God? Like “Hello, all you need to take is this one class for right now.” Only time will tell.

#Medical, ADA, Adult, adulthood, Adulting, Back Pain, BackPain, Broken Rods, BrokenRods, Chronic illness, Chronic Pain, Chronicillness, collagen, Connective Tissue, ConnectiveTissue, Deformity, Differently Abled, DifferentlyAbled, disabilities, disabled, Disableds, diseases, disorder, disorders, doctor, Doctors, drs, EDS, Ehlers Danlos, Ehlers Danlos Syndrome, EhlersDanlos, EhlersDanlosSyndrome, genes, geneticist, genetics, genetics doctor, genetics dr, Handicap, Handicapped, Handicaps, Health, HealthCare, hospitals, illness, Joint Pain, JointPain, Joints, Joints Pain, KyphoScoliosis, Kyphosis, Life, Louisiana, Medicaid, medical, medication, medications, memoir, mood swings, Pain, Pain Doctors, Pain management, pain meds, PainDoctors, PainManagement, Parents of Disabilities, Physical Disabilities, physical Handicap, physical handicaps, physically handicapped, rare, rare disabilities, rare disorders, rareDisabilities, rareDisorders, Scoliosis, sick, sickness, Side effects, Special Needs, Spinal Deformity, Spinal Fusions, spinal infections, SpinalDeformity, SpinalFusions, Spine, Spine infections, Spine Pain, SpinePain, Spoonie, Spoonies, support, Syndromes, UnBreakable, Uncategorized, wellness, Zebra, Zebras

Disability update: Genetics appointment, pain management, pain, oh my!

In High School, I learned that for me to get stuff accomplished, I Need To Do Lists, color-coded or numbered by priority: Otherwise everything is absolute chaos. Yesterday I made a to-do list and got most of it completed: 
I called the genetics doctor to do the genetics testing and find out more about my Ehlers Danlos Syndrome: what type I have, what symptoms of that type, etc.
 I had been waiting to hear back from them. I went to my GP (general physician) in August 2020 to get a referral, they finally sent the referral in Oct or November, and I had still not heard back from the genetics dr office to get an appointment set up. I called and the referral was never uploaded into the computer so I had to call my GP to ask them to refax the referral, but instead of having to wait for that, they went ahead and got all my file info and set an appointment to get me in the books; won’t be until August (unless someone cancels or reschedules, I am on a waitlist.) 
In other news, I am down to 3 pain pills left and my pain management doctor appointment isn’t until the 29th of this month! I called to find out if there was any possible way to either give me another half refill to tide me over until the appointment or to move my appointment up: I was shot down for both! I have 60 ct of tramadol per script- however, since I was completely out of my 60 at my last appointment- they had mentioned that they were going to up my count to 120 pills per bottle-but forgot to do that, I see the doctor every 2 months, and my dosage on my bottle says “take 1-2 every 4-6 hours as needed. Max dosage 8 daily;” On a BAD pain day, I take 6; On a good day, I only take 1. On a great (Miraculous rare day) I take 0. I was completely out on my last appointment on 1/28 (so they were filled that afternoon,) that 60 pills lasted me 20 days till 2/17. 2/17 lasted me until 3/11 with 3 left that I will now have to hide in a spot for absolute emergencies until my appointment on 3/29. The next 17 days will be a test of patience, nerves, and will power, I will have to hope and pray that Tylenol and my spasm medications (Baclofen) and (Gabapentin) will be enough, However: If I lose patience and become “Short with anyone,” I am apologizing now ahead of time. Please bear with me and realize I do not mean it, I am in pain and therefore my nerves are already on edge. 
prayers appreciated. 

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Disability Update: uh-oh! I fell!

 I do not know what happened today, but early this evening, I fell. I am assuming I tripped over a thing of bottle waters, but I am not exactly sure what happened; it all happened so fast! I know that all day I been feeling pretty tired, weak, dizzy, lightheaded; kind of day-dreamy. Research shows that it could be a Ehlers Danlos thing: POTS or Dissociate, Brain Fog, or dysautonomia, or it could just be the fact its “that time of month.” Who knows, its a mystery.  I am not even sure what way I landed or anything. I think I fell on my side, but I cant remember for sure. 

I do not hurt right now, but I will probably feel it tomorrow. I just hope I haven’t done anymore damage to my rods than they already are. If the pain shows up and lasts, I will do x-rays and send them off to Dr. Kelly in St Louis. 

For now, I just got a lecture from Mom about being more careful and to “use my walker,” and “let go of my pride,” blah blah blah. It isn’t a pride thing Mom. it’s just hard to remember to use that thing when most of the time I do not need to use it. I do not mind my cane, walker, or wheelchair, but most of the time I am fine, so I do not think to use them when I feel weak. I will have to figure out a way to remind myself I guess. I just wish I knew why I was having these falling spells?? This is my second one, first one was back in August. Is it because of “that time of month,” or something more serious? Is it because I am not being cautious enough? Its a mystery..One I will have to figure out before I end up living in a plastic bubble because I am such a klutz. Ugh! 

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Disability Update: Good News/Bad news, Infection Update

 I got a email from the Mychart app from my Infections dr; Dr. Mejia. He got my bloodwork results in from Quest diagnostics in Lafayette, LA. Good news, I am negative for infection (meaning, no more infection in my body) according to the bloodwork. 

Bad news, he still insists on the plan of antibiotics being a life-long thing; due to the “complexity of the infection,” whatever the heck that means. 

To say, I am disappointed and upset is an understatement. This makes 2 years that my labs show I am infection free. I had hopes that I could eventually get off the antibiotics. I am not even 30 years old yet, and the idea of life-long antibiotics; God willing I live to a ripe old age, that would be 60+ years of antibiotics! 

yes, it times like these it is hard to see the light and positivity of my life, but I cannot loose my faith and Hope in God my lord and savior. He is good and all powerful, he is all knowing and can perform wonderous miracles. He is the only one who knows how my story will go. Be gone, Satan, quit tormenting me with emotional meltdowns and sorrow. I will try to look to God and find peace in his love and warm embrace.