Holiday Food: A Blessing and a Curse

Today I met with my endocrinologist. My average blood sugar levels are not where she would like them. They show definite strain. I had met with a dietician a few months ago to help lower my sugar levels with diet. Three weeks into my new diet, I started violently vomiting and pulled muscles in my ribcage area. I thought I was having a phantom pancreatic attack. After oral pain medicine did not help, I went to the ER. I was given IV nausea and pain medicine and felt better for a few hours. The very next day the pain was back with vengeance. I went to MUSC and was told I needed to switch medicine for my acid reflux and may have an ulcer. After a 12 hour fast, an endoscopy determined I still had food sitting in my stomach. My gastroparesis (delayed stomach emptying) had flared up. Unfortunately, the diabetic diet and gastroparesis diet have very little overlap.

The holidays seem extra hard as I love Christmas cookies, bread, stuffing, potatoes, and generally all foods that are all terrible for a diabetic. How do I enjoy the holidays and not kill my islet cells? I’ve decided to drink lots of water and eat cheese (protein) before going to any Christmas event. If I have an empty stomach, it is much harder to have self-control.

I want to keep my islet cells happy as long as possible, especially because I can’t grow any new ones. However, the solution now is for me to give myself an injection of insulin every night. I really dislike needles.

Adoption Finalized!

I have long anticipated this day and being able to share this news. My husband and I, after a year of fostering our daughter are now legally her forever parents. We chose the name Amarissa, which means “promised of God” in Hebrew. Today the judge signed the papers. We no longer have a dark cloud hanging over our head. Praise and glory be to God for this HUGE answer to prayer. I persevered through pain to be a strong mother. I’m so grateful that I had friends and family who would not let me give up on this dream. I may be a little biased, but I think I have the sweetest daughter in the world. She was definitely worth the wait!

John the Baptist

John the Baptist is questioned by Jewish leaders as to who he is. In case John can't think on his feet, he is asked if he is the Messiah, a prophet or Elijah (John 1:19-21).

John's response strikes me.

John replies that he is a VOICE crying out in the wilderness (John 1:23).

John's response calls me to examine how I define myself.

Before my illness, my degree and employment were how I described myself. Now as a disabled individual, I have been inspired to redefine myself and think more creatively about my value. I am a daughter, a wife, and a mother. I enjoy yoga and tutoring math. However, my greatest title is "child of God". How often do I truly see myself as a child of God when I look figuratively in the mirror?

I have gone through the fire of horrific, debilitating pain. I am scarred and cinders of pain still appear. Thankfully, I have pain free days and a voice to share my experience. My goal continues to be to encourage others walking on a similar journey. I also hope to be a voice of insight to others who do not suffer from chronic pain.

An article that I recently came across that I found particular comforting used spoons to explain living with a chronic illness. See link: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Please feel free to share your insight and encouragement.

Frustrations with Disability Pay - 6 Months!

Nothing quite takes one's breath away like hearing their income is ending. I received a letter in January 2017 stating my disability case was reviewed and it was determined that I was no longer disabled. I found this particularly interesting because my health had not changed in the past few years.

I immediately contacted an attorney who specialized in social security disability. She explained that it is not unusual for Social Security Disability (SSD) to terminate coverage after 5 years in hopes that the individual won't appeal. I personally think this is terrible. I understand wanting to save money and cutting waste. However, causing stress to folks who are ill is cruel! The attorney helped me complete paperwork to appeal and recommended getting letters from my doctors.

My disability coverage ended in April. In May, I received a letter from SSD stating my appeal had been reviewed and it was determined that I was still disabled. Hallelujah! I was grateful that this conclusion was determined quickly.

I made the assumption that my monthly SSD pay would automatically return to my checking account. In June, when I hadn't received a deposit, I called the number listed on the letter. After multiple phone calls and several transfers I spoke to someone named Mr. Cooper. I was told that my case had not been processed. He would send it to processing.

What would have happened if I did not call? Why did they not automatically process or state in the letter to call? Mr. Cooper said the issue should be resolved within 30 days.

Next month, July, no deposit from SSD. I called SSD. I left multiple messages for Mr. Cooper and others at our local SSD office asking for a call back. No one called back.

In August, I called the national SSD office. I explained my situation. I was informed that my local office is supposed to process my pay, but since so much time had already overlapped they would intervene. I was also told because it was a financial hardship they will prioritize my payment.

At this point, I was praising God that I was making some progress. My checking account balance was drying up. I believed the wait would soon be over.

After a week with no deposit, I called the national SSD office back. I was rudely informed that I needed to have patience. I waited 2 more weeks and still no deposit. This time when I called, I was informed that the "priority" track takes 2 months and I should hopefully receive payment by the end of October! I explained that I had bills to pay and they don't come with a 5 month or 6 month no-interest payment options. I was told to go to the local office and they can cut me a check.

My husband drove me to our local SSD office. I met with a very nice individual who explained that he had never heard of cutting a check and got his supervisor. I finally met Mr. Cooper face to face. Mr. Cooper first denied that he ever spoke to me. Thankfully, I had documented the day and time I spoke to him. He went back to his computer and returned to say yes, he had sent an email to processing but that person never advanced the file. This meant that she had not done her job for 3 months! Why are they getting paid?!

Mr. Cooper informed me that the local office does not cut a financial hardship check while payment is waiting. I am told to have patience. PATIENCE?! I want to scream, "How about you give me your paycheck for the next 6 months and then come to me for your pay and I tell you have patience!" How many people can go 6 months expecting to be paid and not receive anything? I had social security tax taken out of every paycheck since I was 16. I didn't wait to pay my taxes.

Finally, on October 16 after 6 months without pay, I received a deposit from SSD. Who knew it would be this hard?!

Evacuating

Evacuating is a mix of emotions. It means a spontaneous vacation and opportunity to visit with family. However, it also means looking around at all of your belongings and quickly prioritizing what to take. With a baby this year, more space needed to be dedicated to a pack'n play, toys, diapers, etc. I know the important things to pack - insurance papers, birth certificate, passport, medicines and photographs. My wedding album is definitely a must. Similar to a trip, I tell myself anything I forget, I can buy at the store. Unlike a trip, I may return home to nothing. It is hard to look at furniture that has been in my family for generations and the piano I grew up playing and think they may be destroyed. These thoughts remind me to the reality that my heart is tied to objects. I feel guilty as I try to live my life treasuring relationships above everything else. As I look into my little girl’s eyes, I instantly am reminded that I would happily give away everything to keep her safe and healthy.

It was a little eerie leaving our home at 3 am. I passed car dealerships that were empty. Homes and businesses were boarded up.

We merged onto I-95 in the middle of the night. I couldn't believe the road was packed. I was thankful it was moving, but nervous as vehicles surrounded my car. The first rest stop I passed had vehicles parked 3 and 4 deep.

When we finally arrived at my aunt's home. I was exhausted and relieved. It was while I was unpacking that I realized my insulin pen was not in my purse. Ahh! I thought I had been so well prepared. Thank goodness I fill my prescription at a national retail pharmacy. I was able to get a new insulin pen.

My words of wisdom would be to always have all of your medicine, in one place, so in an emergency it can be gathered quickly.

Celebrating

We are celebrating Easter early with the news that we can move forward with the adoption of the sweet toddler that we affectionally call our screech owl. (She loves to screech with excitement and equally loves visiting the live owls at our local farmers’ market.) Keep the prayers coming!

Sick of February

I worked a total of 2 days in the month of February due to illness. I had vomiting, a fever, a sinus infection and bronchitis. It seemed like as soon as I started to get better, I was walloped with the next thing. I spent Valentine’s Day in the ER with my hubby getting fluids. I’m thankful that my true love is always by my side. My blood sugar levels have started to rise. Between life stress and illness, my islet cells are fatigued. No news yet on paternity test or disability appeal. 

January - A Hard Month

This has been a hard month. We found out that we may not be able to adopt the sweetheart residing at our home. There is a potential biological family member interested in adopting her.

I also received a letter from social security disability stating I am no longer disabled and my benefits are ending. My health and limitations have not changed in the past few years. I do not understand. I am going to seek the help and wisdom of an attorney to appeal.