AutoimmuneErin

09/23/2023

Please spare a moment to sign this petition and help this women with Lou Gehrig’s disease (aka ALS)

Change Durham Student Transportation Services Discriminatory Eligibility Criteria

11/12/2022

Anyone care for a bite of my uterus? 😝

I think my fav was asking my 90 year old grandfather if he likes the taste of my uterus 🤣 He wasn’t impressed.

Super happy and thankful that my monthly subscription is finally cancelled! Death to my uterus was honestly the best thing. Definitely got rid of the excruciating, dropping to my knees in pain. It will still be a long recovery as the longer you are in pain, the longer the recovery time and 18 years is not a short amount of time.

The Pathology results:
✖️ Endometriosis of Bladder
✖️ Endometriosis of Bowel
✖️ Endometriosis of the Cul de Sac
✖️ Endosalpingiosis (which is a very rare cousin of Endometriosis) of right fallopian tube
✖️ Paratubal Cysts of the Right & Left Fallopian Tubes
✖️Adenomyosis (when the lining of the uterus starts to burry itself and invade the muscle layer of the Uterus)
✖️Leiomyoma (Fibroids) of the Uterus Myometrium (middle layer of the uterine wall)
✖️ Left peri-inguinal mass showed benign
✖️ Referral sent to a Interventional Radiologist to investigate possibility ‘Pelvic Congestion Syndrome’ (aka Pelvic venous insufficiency) due to overly enlarged right ovarian vein

All pathology samples were benign as expected.

What does this mean from here? A Part 2: A high possibility of another surgery in the New Year. This means having coils placed in my pelvic veins to stop the blood from pooling in my pelvic cavity. Hopefully this will be the last of pelvic surgery for a while at least. I’m glad I did both the Laparoscopic excision & total hysterectomy at the same and got both of those over with resulting in less delays.

💛 Pelvic Congestion Syndrome is basically varicose veins in the pelvic cavity. It is when the flaps of the veins stop working and blood starts pooling in the pelvis rather than being pushed back up to the heart.

💛 Pelvic Congestion Syndrome is commonly seen in a triad with POTS & Ehlers-Danlos Syndrome (I’m on a 2 year waitlist for EDS to be reviewed and have another 4-8 mo wait remaining. I was diagnosed with POTS 11 years ago.

💛 Extra Pelvic (Endometriosis outside of reproductive organs) is NOT rare!!

11/11/2022

Truth on so many levels!
There never is an end in Chronic Illness. It is so hard trying to plan for that perfect day- especially when you don’t know when that will be. There is always something whether it be feeling unwell, another appointment, bloodwork, scans, surgery, therapy. There never is an end and sometimes you just need to take that that leap of faith and hope for the best. It may work out great and it may not, but you tried. Remember to let your breathe!

09/27/2022

💛 OFFICIALLY 8 DAYS POST-OP!!

After a long 2 year wait due to covid delays and cancellations, I finally had a long awaited surgery. On Sept 19th, I had a laparoscopy for endometriosis, a cystoscopy to check for endo inside my bladder a total hysterectomy (removal of uterus and cervix) and salpingectomy (removal of fallopian tubes). I have only my ovaries left for hormones and so it doesn’t throw me into early menopause. It was definitely a lot to do in one shot, but, I wouldn’t change a thing. I’m sore and tired which is to be expected, but, I’m doing much better than I thought I would be doing.

16 years ago, I had my first lap for endo completed by a regular ObGyn who only checked my ovaries, tubes and uterus. At the time, it was believed endometriosis “reproductive” only disease. Now we know endo is a full body systemic inflammatory disease. Every follow up visit I had with the ObGyn I a different answer as to whether or not I had endometriosis. And her answer to resolving the issue was always the same… “just get pregnant” 🙄.

Now we know that Endometriosis is a full body, systemic inflammatory disease. Needless to say, since then I’ve waited to have a second option. Unfortunately, following healing my Lupus flared up as I wasn’t approved for surgery again until about 3 years ago.

On Nov 2 I will visit the surgeon for follow-up and all the details. My surgeon will provide photos from the scopes showing the areas before and after excision. Alll biopsies, scrapes including confirmation of adenomyosis of my uterus will be provided. The surgeon did come visit me in recovery and let me know he did find bladder and bowel endometriosis and a dilated vein to my uterus (not exactly sure what that means yet).

I am just really looking forward to healing and getting the results!

💛

08/09/2022

Steph needs our help!

Adrieanne is organizing this fundraiser on behalf of Stephanie Pezzimenti … Adrieanne Beasley needs your support for Stephanie Needs Life Saving Treatment

06/10/2021

BE HAPPY NOW!

✨We just can’t wait until they’ve found a cure, or give us a diagnosis, or validate symptoms & feelings….if we as chronic illness patients did that, we would never be happy.

✨Find joy in the little things. Laugh more. Catch us with a good friend. Embrace self care. Watch a funny movie. Spend time in Nature. Cuddle with your pet. Walk along the beach/lake.

✨ Life is not perfect. We struggle ALL the time. We deserve to feel happiness. 🤗 Even if in bits and pieces. One of things that helped me the most was finding a Clinical Health Psychologist that specifically deals with chronic illness and how to rebuild life with new challenges and disability.

04/27/2021

Just taking a bit of a break as I have a lot going on at the moment. Still around and peeking in. 💜

02/18/2021

🩸Periods. The word itself scares me after years of excruciating pain, heavy bleeding and the many comorbidities that come along with endometriosis and adenomyosis pelvic pain. So of course, I’m always up for trying new and innovated pain management therapies. Anything that can help get me through the painful weeks.

🤩 Ovira recently sent me a beautiful welcome package! This was something I hadn’t tried yet. Ovira uses pulse therapy. TENS, transcutaneous electric nerve stimulation has be used for decades in the medical field to relive pain. Most commonly seen in physiotherapy offices, it works by overloading the nervous system thus reducing and fuzzing the pain signals to your brain.

🗝 I have to admit I was a little terrified of the idea of electrical pulses anywhere near my pelvic area. I applied the love handles and started Ovira on the lowest setting and went up a few notches so it wasn’t uncomfortable but that I could still feel it. To my surprise, the pulses became soothing like a massage. And, I was able to fall a-s-l-e-e-p! Completely unexpected and very welcomed!

♥️ My Favourite Things About Ovira:
1. It’s Portable & Very Light weight
2. It’s Drug-Free
3. It’s Comfortable & Discreet
4. It’s Backed by Science

🙏🏽 Ovira will be great to have onboard during my upcoming laparoscopy recovery to help alleviate pain! Super thankful to Ovira and happy to say she’s officially a part of my pain management team.

02/09/2021

🔬Medical Historians identify the mid-20th century as the time when science and the medical community first recognized Autoimmune Disease. Although the first diseases were proposed in the early 1900’s. These were both of the eye and included sympathetic ophthalmia and endophthalmitis phacoanaphylactica. It was the contributions to ocular immunity that really brought autoimmunity to a head-front.

❌ During the first half of the century autoimmune diseases were seen as biologically implausible. ”Horror Autotoxicous” was the term coined by Paul Ehrlich to emphasize that the idea that self-injury goes again nature.

⏳ It wasn’t until the 1950’s when Autoimmune Disease was really being recognized after studies of Thyroiditis and a series of clinical laboratory breakthroughs. Henry G. Kunkel studied patients with Rheumatoid Arthritis and Lupus and using newly developed tools in protein chemistry Kunkel and his coworkers were able to demonstrate that certain antibodies in the blood of people with rheumatoid arthritis reacted with other antibodies as if they were antigens (the rheumatoid factor). Soon following, Kunkel also discovered and characterized several autoantibodies in Lupus thereby debunking fundamental principles in immunology.

🤧 Discoveries of allergies and anaphylaxis lead to the first clues that the body’s immune system can indeed cause self-harm.

📝 The major obstacle was learning how the immune system was determining foreign invaders from self. This process was eventually understood as immune intolerance.

Ref Sources:
PMID: 27131478
http://centennial.rucares.org/index.php?page=Autoimmune_Diseases

02/01/2021

🗣 Let patients, parents and advocates help!

👩🏻‍💻 In today’s society, we have access to an an incredible amount of information available on the web, which includes medical journals, studies, trials, apps, therapeutics, specialty doctors, patient reviews & experiences, patient communities and groups via social media, organizations and more.

📚 With all of the accessibility it allows us to be more educated, aware and empowered! It is no longer unheard of that patients themselves are often finding the answers to their own diagnosis before conventional doctors are able to do so. A major contribution to this doctors not listening or believing patients enough.

⚕️Patient focused care should always include the patient.

01/31/2021

When Dave deBronkart learned he had a rare and terminal cancer, he turned to a group of fellow patients online -- and found the medical treatment that saved his life. Now he calls on all patients to talk with one another, know their own health data, and make health care better one e-Patient at a tim...

01/27/2021

🦋January is Thyroid Awareness Month. Up to 20 million Americans have a thyroid condition & 60% of them don't know it. If thyroid isn’t regulated it can be overactive Hyperthyroid (Graves disease) or underactive (Hypothyroid). In addition, the thyroid can also be attacked by one’s own immune system causing inflammation and this is called Hashimoto’s Thyroiditis.

🦋What you should know!
- S*X: Women are much more likely to develop Hashimoto’s
- AGE: Can occur at any age, but much more likely to occur mid age
- HEREDITY: Your risk increases if you have a parent or others in your family with Hashimoto’s or other autoimmune diseases
- OTHER AUTOIMMUNE DISEASE: Having an autoimmune disease increases your risk of developing Hashimoto’s
- RADIATION EXPOSURE: People who are exposed to much more radiation levels in the environment/workplace are more prone to development of Hashimoto’s disease.

🦋 Untreated Health Complications!
- GOITER: When the gland becomes enlarged due to constant stimulation of your thyroid trying to release more hormones.
- HEART PROBLEMS: Risk of heart disease as people with underachieving thyroid produce high levels on LDL (low-density lipoprotein) cholesterol- the “bad” cholesterol and this can lead to an enlarged heart or in serious circumstances heart failure.
- MENTAL HEATH: Depression can be seen in Hashimoto’s, starts earlier in disease and increases over time. It can also lead to lower levels of libido in both men and women.
- MYXEDEMA: (miks-uh-dee-muh) This is a rare, but life-threatening complication and sue to severe long-term untreated Hashi’s. It starts as drowsiness followed by extreme lethargy and unconsciousness. Myxedema coma is trigger by exposure to the cold, sedatives, infection or other stress o your body and requires immediate emergency medical treatment
- BIRTH DEFECTS: Pregnant women with untreated Hashi’s may have higher risks in birth defects such as heart, brain and kidneys and even intellectual and developmental problems.

🦋 How to get tested!
1. HORMONE TESTS: TSH (Thyroid Stimulating Hormone) measures the amount of hormones produced by your thyroid and pituitary glands. Other blood tests like T3 (triiodothyronine) & T4 (Thyroxine) maybe needed to properly analyze.
2. ANTIBODY TEST: Because Hashimoto’s is an autoimmune disorder that means there may be involvement in the production of abnormal antibodies. Therefore, a TPO (Thyroid Peroxidase) must be completed in order to test for the enzyme normally found in the thyroid gland and plays an important role in hormones. Keep in mind this test isn’t positive in everyone with Hashimoto’s and it can fluctuate! Also, she people have TPO antibodies present, but do not have a thyroid problem.

Source: https://www.mayoclinic.org/diseases-conditions/hashimotos-disease/symptoms-causes/syc-20351855