Rare diseases awareness month

Princess_Jessica

O wow has it been a year already I can remember commenting on this post a year ago I have high Hope's they they will soon come up with a cure or pain management if your suffering from some sort of rare disease my heart goes out to you and I just want you to know I pray every night for you I know all to well what it is like to live with a disease so I pray every night before going to sleep for cures and pain management

Angel_Natasha

😊😘😘😘

rare

Since it's a beginning of Lunar Year and everyone has started to celebrate it I just hope everyone to be healthy and happy 😊

aautz1

I love reading these stories..some of these I had never heard of.

Years back. My husband's eye kept swelling shut we didn't know why..I looked it up and we went to doctors figure out why..he has arthritis in his eye..or what they call eyeritis.

I had never heard of this until he was diagnosed

Nat09

Thanks everyone for your kind words of support and encouragement.🥰 I think it’s so important for people ( anyone) who is hurting to feel like they’re not alone. This thread is for them, us, zebra’s or not, if you’re going through difficult times because of your illness, we’re here to listen and just be here for you. Plenty of us play these games to escape from the pain ( even if it’s for a few minutes) and especially the boredom of not being able to get up and do anything 🙄 hate those days 🤨

Stay strong 😊🐰

Diamond_Lim

You are welcome! @Nat09 💖😊

Sammyjo

Hi Everyone. I would like to talk about a medical condition that I have had for the past 17 years. It is called Severe Spinal Adhesive Arachnoiditis. There are 3 layers covering the brain and Spinal cord. The middle layer is called the Arachnoid Layer, because it looks like a spider web.There are very fragile nerves in this region that are bathed with Cerebral Spinal fluid. Unfortunately, the nerves in my low back region are scarred, clumped together, and pushed to one side. This has caused an Incomplete Spinal Cord Injury. This has caused me to have problems walking and moving around. It has caused severe weakness in my trunk muscles, which has caused significant bowel and bladder problems. There is no cure for this condition, and the resulting, electric shock-like, radiating pain that goes from my low back region and down the backs of both legs to the soles of my feet. This pain is constant and worsens as the day goes by. 😪 There is no treatment for this condition, and the stronger pain medications that I have to take for this 9-10/10 pain, to have any quality of life, have been lowered by 85% in the past year. The pain clinic where I have gone for the past 14years, has lowered the doses of all patients taking stronger pain meds, as they will no longer be caring for patients like me, ones without a treatment or a cure, and only needing very strong pain meds. I have been trying to get a new Pain Dr, and this has been very difficult. So, my quality of life has suffered so much. I am only sleeping about 3.5 hours out of every 24. I have been getting Multi drug resistant infections, that sometimes require IV Antibiotics, nearly once per month. I used to be more active within this Community, but this past year has really limited my time here. My health is so fragile. It is harder to concentrate, because of my pain.

If you believe in the power of prayer, could you please pray that my appointment with a new Pain Dr on March 4th would go well,and he would accept me as a new patient, and,also, that he would increase my pain medications, so that I will be able to sleep better, and have an increased quality of life?

Thank you so much!

I am sorry that my message was so long. Thank you for listening.

CassD

@Nat09 - You are constantly in our prayers, as are other members of our lovely Community who are suffering from such diseases.

@Sammyjo. We'll keep you in our prayers for the new doctor to accept you as a patient.

A year ago, I mentioned that my sister had suffered from IPF (idiopathic pulmonary fibrosis) amongst other serious health conditions and spent seven years on oxygen. My latest CT scans have revealed that the fibrosis in my lungs has worsened, so I'll have an appointment with the Pulmonary Consultant at the end of next month. I know that it can cause atrial fibrillation, which I already have. I'm praying that the fibrosis is not much worse and that its progression will be slow. I'm sure the Lord keeps me singing so that my lungs continue to function as best they can!

Sammyjo

Hi, Everyone. @CassD Thank you so much for your kind words and prayers. I am so sorry to hear of you and your sister's battle with Idiopathic Pulmonary Fibrosis. I will definitely keep you in my thoughts and prayers, especially that your upcoming appointment with the Pulmonary Specialist will go well. I admire your determination with your singing, even though, I am sure that it is not easy for you to do.

@Nat09 I will also keep you in my thoughts and prayers. I also admire your determination in continuing to be an active member of this Community, even though you struggle with so much each day.

May God bless each of you, and the many others in this Community who bravely face their own health struggles each and every day.

Nat09

Hi @Sammyjo So sorry you have to suffer every day that horrible disease. I get painful shocks at T 7 and lower back but only sporadically, can’t imagine getting those all the time in your lower back and legs, it must be very painful indeed. I really hope the new Dr. takes you as a new patient, it would be cruel of him not to, it’s their job. I find though that some Dr. are afraid of patients like us cause they don’t know how to treat us, I’ve even been yelled at in a ER once because he said I had too many problems. My 1st neurosurgeon didn’t want to operate on me, he said he didn’t want me to come back and sue him if it didn’t work. I went to see another neurosurgeon who took me right away to operate because the spinal fluid wasn’t circulating between the head and neck, it was urgent, sometimes you just need to find the right Dr., so good luck, I hope you find him in March. 😊🐰 Also, have you tried mindful meditation? A psychologist got me started on it a few years ago and it has helped me tremendously. It helps by focusing your brain on something else, even if it’s for a few minutes.😉

@CassD Thanks dear friend 🥰 I pray that your condition progress slowly and hopefully a cure will come along soon.😊🐰