HOPE: My journey through Type 1 Diabetes, 35 Fibroids, 1 Polyp and Asherman's syndrome

There are no other words...



Courage & Strength

Courage is not having the strength to go on, it's going on when you don't have the strength.

 

Theodore Roosevelt

 

 

Please keep me in your prayers as my journey continues

10 years with Type 1 Diabetes: My 10th Dia-versary

10 Years With Type 1 Diabetes



A type 1 diagnosis is life-altering, nobody can forget the day of diagnosis. There is even a slang for it: Diaversary.

Ten years ago today, I was diagnosed with having type 1 diabetes. It was March 20, 2003 and it is hard for me to believe I have been living with type 1 for an entire decade. This means 3,650 days, over 21,900 finger pricks and over 18,250 injections of insulin.

The news that I had type 1 was a relief in a sense but a life altering change. My physical condition became real to me. It had a name. There was nothing I did wrong to acquire this disease. It was an autoimmune response that attacked my pancreas. I wasn't just tired from lack of sleep or too much exercise. There was a reason why my vison had gone from perfect to seeing the world in a complete blur. I was visiting the bathroom every five minutes and losing weight while eating and drinking everything in sight. I was sick and wasn't going to be cured. All I could do was manage this condition. It would always be there. Life was now life with type 1 diabetes.

I now mange my diabetes with an insulin pump and it has helped give me more tight control over my blood sugar and has helped avoid the many scary nights of almost becoming a victim of dead in bed syndrome. Even though I'd like to hide my pump at times, I am proud of it and don't really care about the strange looks and comments I get from people. No, it is not my phone or camera! It is my insulin pump. I have type 1 diabetes.

My days are more involved and I can't just run out of the house quickly. I must make sure that I have extra alcohol wipes, pump cartridges, pump cannulas, insulin, syringes, batteries and my glucose meter. I must also always carry some form of sugar in case of a low. Now you understand why I always carry such a big purse.

I'm blessed to live in this country, with access to the best medical care in the world and for my amazing endocrinologist. She has made a significant difference in my diabetes care and I can't thank her enough. She is also a type 1 and can relate to the daily diabetes struggles.

Today is an occasion celebrating me and my life with diabetes. The numbers I'll be thinking about are not only ones of my glucose meter and the 3,650 days I've already gained in life, thanks to insulin and diabetes advances. I'll be grateful and am looking forward to the next decade of life with type 1 diabetes. I feel confident the next decade there WILL be a cure!

3 + 2 = SURGERY # 5 Los Angeles: Asherman's Syndrome

Surgery #5: Los Angeles, California



I traveled back to Los Angeles for the third time to have surgery for my Asherman's syndrome. I developed AS from my operation on 12-28-11. This was my third surgery in LA and my fifth surgery overall.

AS is not a problem that is faced on a monthly basis. It is a daily battle, full of many types of pain. You can't get away from it. Everything from TV, a trip to the store, losing more time at work, the financial burdens and insensitive comments and actions made by those that should care for you are a constant reminder of this awful journey. Some days are harder than others and some days are better than the ones before. But for woman facing AS it is a daily struggle.

I love California and was happy to be leaving the cold weather in Minnesota but not thrilled to be needing another surgery. The sunny skies always seem to help calm my nerves.

Biking the South Bay Trail

Beverly Hills

 

February 20 was the big day for #5. Dr. M. wanted to take an aggressive surgical approach. Hysteroscopy and laparoscopy were performed and another RE assisted him in the operating room. I had the same anesthesiologist and felt very comfortable sliding onto the operating room table once again and pretending to be in a relaxing place until being put under general anesthesia. I awoke in the recovery room coughing repeatedly and the anesthesiologist talking to me. He has always been wonderful with checking to see how I am doing. My surgery went well. Dr. M. was able to lyse all my adhesions and establish a normal cavity. A balloon stent was inserted in my cavity to hold things open during the initial healing phase. I am on high dose hormone therapy for an extended length of time.  Once my stent is removed, I will have weekly appointments where a metal dilator is inserted into my uterine cavity to try to break through any reformation.

 

 

I could tell an aggressive approach was taken but stood strong through the recovery. The carbon dioxide pain always seems to be harder to handle than the pain of the incisions.

 

 

I was even able to attend the Lakers vs. Celtics game. Lakers owner Jerry Buss passed on February 18 and this was the first game played since his death. There was an emotional tribute to Dr. Jerry Buss before the start of the game. The Lakers defeated the Celtics 113-99.  I didn't think I was going to make it to the game and as I tried to put my jeans on, Brett looked at me and told me to wear something comfortable. He was right, there was no way I was going to be able to wear jeans. I wore my sweats.

 

 

It was another wonderful surgery experience and we enjoyed our time in LA. We always leave and hope to never return to California for another surgery.

 

 

Malibu Pier

 

Malibu

 

Beverly Hills

Santa Monica Pier

Santa Monica Pier

Watching the beautiful Pacific Sunset

The perfect recovery the night after surgery

 

 

Walking with the Lord along the beach and leaving footprints in the sand. Wherever I am, God is always there; walking with, or carrying me through the chapters of my life. Blessed is our God! He knows every detail of the journey, the financial strains in my life, the awkwardness of those that fail to understand and make insensitive comments, the way faith plummets when faced with another surgery. He is always by my side.

 

 

 

Many thanks to those of you that follow my journey and are always there to offer encouragement and understanding. I wish there were more people like you in my life. Thank you for your support and always remembering my upcoming appointments. Please keep me in your prayers for a successful surgery and healthy healing. 



 



 





 



Asherman's syndrome journey

SCARS

 

My journey has caused scars. Some are physical scars from the many surgeries I've endured to correct the complication I developed and from my first operation. Some are not just scars but the internal adhesions that I developed and continue to reform due to the damage that was caused. The most painful scars are the invisible ones, the scars of my wounded heart. Some scars are old, some are more recent. My heart bears the scars of hurtful words, spoken out of ignorance, but injuring just the same. The insensitive comments, baby shower invitations, birth announcements and pictures sent of your babies make scars like deep paper cuts across the surface of our hearts. These things remain unopened. I have tried to explain my condition and the physical pain associated with this condition but some still fail to want to learn. Or try to think about the financial burdens this has caused us. I have many physical scars and scars tattooed on my heart.

 

The Great Physician takes his place at my bedside to brush away the tears and bind the wounds. Even if  I cannot sense his presence, God promises to be near to me, ever working, ever binding the wounds, healing the hurt. He truly understands the hurt the heart carries. My scars will be a magnificent vehicle for my testimony of healing to another who comes behind me baring similar scars.

 

It has led me to be an advocate for Asherman's syndrome with the help of the International Asherman's Association. Us woman of the IAA provide support and guidance to woman suffering through this rare condition. I have met many wonderful women and wish we all didn't live across the globe from one another.

 

My scars have led me to the most welcoming, compassionate, caring doctor. Always going above and beyond and making his patients feel like they are his only patient. He means the world to me. I can't thank him enough for his support and the exceptional care he provides for me. He makes it much easier to travel 2,000 miles from Minneapolis to Los Angeles for surgery for my rare condition. He is the expert at AS and due to my severity is the reason I travel the distance. He is one of the only RE's in the world with the skill to treat this rare condition and the severity of my case. He has a passion for helping woman with AS and it truly shows. It is a blessing that my journey has guided me in his direction.

 



Back to Cali: Surgery #4 Asherman's Syndrome

 

Christmas Tree at Santa Monica Place

 On November 29th I had surgery #4 in Los Angeles with Dr. March. This was my 4th surgery in 11 months. The surgery went very well just like #3. He was able to lyse the adhesions and establish a normal cavity. The right side of my uterine cavity showed a good amount of healthy lining or endometrium that Dr. March called excellent. However, my left side showed no visible lining. This could mean the deepest layer or basal layer was destroyed during my fibroid surgery. This could also be the reason why adhesions keep reforming on the left. I do need to stay positive and remember that no lining could be seen on my previous surgery. I am hoping for a better result on my left side. At my pre-op appointment Dr. March performed an ultrasound to check my lining. He was happy with what he saw in some areas and even printed us a picture. Brett and I held the picture and smiled. We were just as happy with this picture as someone is with their pregnancy pics. It goes to show when you are faced with a situation like ours, we really appreciate the smaller things in life. I have a stent placed in my uterus for 3 weeks and taking high hormone therapy for an extended length of time. I requested the same anesthesiologist and was able to leave my insulin pump on during surgery and felt wonderful after.

Pre-op appt the day before surgery

Recovery: Yes, that is a smile you see

 

Dr. March reminded me not to let others bring me down when they wonder what I am doing and ask me if I should just have had a hysterectomy. He then said these people are uneducated and need to learn. He said it is my job to be an advocate and educate others. I was told the reason I was back for another surgery is because there had been improvement, which is a positive. 

During my recovery after my myomectomy to remove 35 fibroid tumors, I shared my story with a woman from Canada named Holly Bridges. My story is published in Holly's book: The UnHysterectomy. It is intended to educate people on other surgical options to solve gynecological issues without removing an important organ, the uterus.  My story was first published before I knew I had developed Asherman's Syndrome. She has been ever so kind to continue to help share my journey and provide updates. The updates can be viewed at this link. 
http://unhysterectomy.com/anupdatefromsarah/

I don't think of myself as courageous, I just want to feel normal again. I do agree that I'm a fighter and want to be able to share a success story with others. I am a driven person and it would be so hard for me to say I failed at something.

I believe in hope and miracles and continue to pray for healthy healing so my body remains free of adhesions.

 LOVE: Lil Ben resting with mom