chronic illness

A Gluten-Free Patient

It seemed that the hospital staff seemed to miss two very important words when I was admitted to the hospital following my surgery last week: Celiac disease.

Since surgery was bright and early, I was in my room before lunch. Even though I was on a liquid diet, I knew something wasn’t right. Sitting next to my red jello on my tray was chicken broth. Whoever can stomach straight chicken broth after surgery (or anythime for that matter) is beyond me. I didnt question the chicken broth in my tray for its lack of appeal to my taste buds but because I remember how hard it was last Christmas to find gluten-free chicken broth for the turkey marinade.

So when the nutrition staff came back for the tray, I asked, “You know I have Celiac disease right and cannot have gluten?” In knew when she looked at me like I had fournheads that I was in trouble. You see I know for a fact that the nurse and I discussed my diet needs during my pre-op interview in which I stressed the importance of a gluten-free diet.

Somehow it seems that that fact got lost somewhere between the interview room and my medical chart as there was not a single mention of Celiac on my chart.

Once we made it sure that it became clearly notated on my chart (and by we I mean myself and my infuriated husband who happens to be pretty protective of his lovely wife), I started to question I was the only Celiac in the county. Since the prevalence of Celiac disease is now 1 in 133 in the US and therefore chances were that I was not alone, I was starting to understand why most people I talked to headed to Charlotte for procedures instead of staying local. No one seemed to understand what “gluten-free” meant. My night nurse seemed completely confused while the night time nutrition staff breathed a sigh of relief when the Dr said that i needed to stick to jello for the night. Hubs was making a run to the drugstore next door so he picked up some Rice Chex just in case. Eventually the head of the nutrition staff came to understand what a gluten-free diet was which meant that I spent the rest of the weekend eating plain baked chicken breasts.

While I did not go hungry and thankfully avoided any type of gluten-contamination, it still baffles me to think that a medical facility could seem to be so clueless about an increasingly common medical issue like Celiac, even in a small town. The whole experience made me realize just how important awareness programs are and make me even more hopeful that this surgery will allow me to lace up my running shoes and join Team Gluten-Free for a race for Celiac awareness.

chronic illness

Surgery #5 Recap

When my alarm went off at 5am on August 12th, I was already awake. In fact, I’m not sure I dozed that night for more than 15 minutes at a time. I was exhausted. I drug myself out of bed without a fight because I wanted to get the day over with. Within 25 minutes we were out the door. Abby was still asleep as my parents were in town and would be dropping her off at school before making there way to the hospital. At least I had a cute bag to pack in:

 

We checked in at the hospital at 5:45 on the dot. Why your arrival time is almost 2 hours before your surgery start time is beyond me. We sat in our pre-op room for what seemed like days. At 7am, my room became alive with activity. The anesthesiologist came in for a visit to review my medical history one more time and make sure I understood what would be taking place in the operating room. One nurse started taking vitals while another began the game of Where’s Waldo looking for a good vein for my IV. The numbing medication they put in your hand before they insert the IV may be one of my favorite medical inventions. My anxiety was through the room. Hubs offered words of comfort between levels of Angry Birds (he is now a full-fledged addict).

 

At 7:20, the OR nurses came for me. This time there were no tears (I cried like a baby when they came for me during my hysterectomy). While I was scared, this time it was different. I had Bert by my side (yes, they let me take him in the OR).

 

Everyone in the operating room was bright and chipper (just how I like them!). Everyone introduced themselves – not that I remember any of their names. Bert was a hit. Laughing before surgery is a good thing as it was the last thing I remembered before going under.

 

Hours later I awoke in the recovery room wondering if anyone caught the license plate of the semi that ran me over. I’m not sure how long I was there before I was transferred to my room. As expected, my doctor had to perform a laparotomy which meant at least a weekend hospital stay. I was greeted by my family and a friendly nursing staff who tried to make my stay as comfortable as possible. While this was my third surgery at this hospital, this was by far the best care I have had (even though I have no complaints of my prior visits). I think Bert would say the same as I believe he got excellent care:

As far as the surgery details, I ended up with three incisions – my belly button, a small incision on my right abdomen (where they attempted a laparoscopy), and my laparotomy incision. They reused my hysterectomy scar but had to make it slightly bigger which I would estimate to be around six inches in length. There was no scar tissue or ovarian tissue to be found which was a big cause for celebration. Scar tissue was a major source of complications during my hysterectomy so we were pleasantly surprised to see that it had not returned. The only unwelcomed guest was endometriosis. While I was never on a large dose of estrogen as a part of my HRT and had been off oral estrogen for almost a year, it had made its comfortable throughout my abdominal cavity, especially on my bowels.

 

All endo that was found was excised, including the removal of my peritoneum. However, to ensure that it does not make its return, I will begin an aggressive progesterone treatment after recovery. She said that the treatment I will be taking will be the same as that she gives uterine cancer patients. As much as I want to ensure that endo is gone for good, I can’t say I’m looking forward to it. The side effects aren’t that pleasant as one of the most common is weight gain. I am hoping that will all the endo removed my pain will be gone so that I will be able to actively fight it.  I will get more information about it on first post-op appointment on Friday.

 

Being a week out, I feel like recovery is going fairly slow. My incision is killing me and I cannot seem to get comfortable. Wearing normal clothes below the waist is next to impossible. It doesn’t take much to wear me out. My parents took Abby to VA for a couple days but now she is home! I missed her so much! So far she has been very understanding that Mommy can’t pick her up because my “belly is sick.”  She is such a sweet girl. I swear she grew 2 feet in the last week. Hopefully I will get back to posting regularly this week! Thank you for all of your thoughts and prayers over the last week! It means so much!!!

chronic illnessmarriage

Support for Caregivers: When Our Loved Ones Hurt

So excited to introduce you to another guest while I’m still trying to recover from surgery! I met Samantha through the wonderful world of Twitter & blogging and am so happy to have her here at A New Kind of Normal! As a spouse of spoonie who deals with chronic pain, she offers a wonderful perspective on being a caregiver and how to care for someone you love who deals with chronic pain and/or illness and also how we can provide support for caregivers who need it just as much as the one who is sick does! This is a great follow-up to Cheryl’s post on pain & relationships from a spoonie’s perspective  I hope you enjoy! Be sure to visit her blog & say hello!

WHEN-OUR-LOVED-ONES-HURT

 

Immediately after hearing that first gasp of air, that first cry, I searched through the haze to find my husband. I could see it in his eyes – the uncertainty, the nerves. Every new dad probably has the same look on his face but this was something more.

I held my breath as the nurse handed little man to him for the first time. His eyes lite up with love, understanding and happiness. But pain was also hiding in his brown depths if you knew where to look.

 caring for a loved one with chronic painimage property of Life As Wife

My husband Kris has Torticollis, a muscle disorder in his neck that limits his range of motion and his ability to carry and hold things or stand for long periods of time. The muscle, the Levator Scapulae, is responsible for allowing you to turn your head. When there are muscle spasms a loss in range of motion and stiffness of the neck can occur. Basically, Kris’ Levator Scapulae is constantly spasmodic; therefore, it is tight.

 

I didn’t know how much pain my husband was in on a daily basis until we had our son. He was good at hiding it from me even though he was medically discharged from the military after his injury was aggravated. When little man was born, I started noticing his frustration. Kris wanted so desperately to rock our son and hold him while he slept but his chronic pain limited his ability. My heart was and still is aching for him.

 

Our son has brought us closer and allowed me to be more understanding when Kris has his bad days. Here are five ways you can be more empathetic if your loved one has chronic pain:

 

  1. Don’t assume: that old saying rings true! Assuming what your spouse can and cannot do because of their chronic pain is hurtful and unproductive. I would find myself constantly telling Kris to be careful or not to do something. I know I was annoying him on a daily basis. He is a grown man and knows his limits; he doesn’t need me bossing him around. Of course, my concern comes from a loving place; however, being supportive and letting your loved one live as normal life as possible is key.
  2. Work as a team: I know that it hurts Kris to rock our little man to sleep so I step back and let him get bonding time during playtime, feedings and changes. If there are several things to do around the house, I always try to do the things that I know are painful for Kris. That way, we are splitting responsibilities but he is still taking care of himself.
  3. Give emotional support: On Kris’ bad days, I know he feels really low. I think that being there as someone for him to talk too really helps. Sometimes people with chronic pain undoubtedly suffer from effects other than the pain, which may even include depression. Make sure to talk to someone before YOUR frustration turns into depression or anxiety.
  4. Communicate & Remember: I used to find myself getting upset or frustrated when I felt like I needed more help. Like I mentioned above, Kris is really good at hiding his pain so sometimes I would wonder why he was just sitting there on the recliner, not wanting to play or get out and do something. As soon as I realized he was having a bad day or was having a day of high pain level, I instantly felt my anger melt away.
  5. Above all, love: I know when Kris’ injury was aggravated; it was a big blow to him. He loved the Army and having to retire was really hard on him. Sometimes simple tasks are no longer simple. Self-esteem can also be an issue on bad days. Remember to show and verbalize your love and give encouragement.

 

Do any of your loved ones have chronic pain? How do you help them deal with it? What can be done to support YOU as a caregiver?

 

Samantha is the author of Life As Wife. She has a degree in Print Journalism and Political Science. Engaged in high school and married in college, Life As Wife follows Samantha’s nontraditional journey and documents her job as a writer, wife and new mom.