Thursday, March 29, 2018

The stress hormone

I talked with my doctor yesterday. She said my tests were mostly normal (as expected), but my cortisol is way off. By night time it is nearly non-existent! So that explains a lot! It explains why I don't sleep well and why I am so tired all the time. She still feels, as do I, that there is an underlying condition that we haven't discovered yet that would explain all of my symptoms. She believes I may have the MTHFR gene mutation, which would be interesting, and she wants to run another few tests to see if we can get to the bottom of this and help me get better!

For right now, she wants me to start right away on Adrenal support supplements to see if that will get my cortisol levels back in line. If I don't feel any better in a couple of weeks, steroid treatment is next. I am hoping and praying the supplements will do the trick!

Another part of this is rest. I need a lot of it! From everything I have been reading, a period of rest and less stress is vital to healing the adrenals and balancing cortisol levels. I've already cut a few activities out of my weekly schedule. There are a few I am going to keep for now, but I am hoping to have no more than a couple of weekly activities on my plate by the end of April. This may seem drastic, but I want to get better, and if taking a break from everything for a while is what needs to happen, I am going to do my best!

Resting is going to be hard though. I like to do things, I like to be around people, I like to spend time doing things with my boys! However, not only have I been reading about the need to rest to recover, but I feel strongly the Lord has been calling me to take a time to rest. Not only do I need to rest in order to recover physically, I believe I need a time to rest and seek the Lord. A time to saturate myself in His Word and grow closer to Him.

So if you don't see me around much, you know why. If you do see me around, know that I have planned and prepared for this outing carefully.

Diet, light exercise (such as a brief stroll), supplements, possibly medication, focusing on my relationship with the Lord, and rest, rest, rest. That's what I'm going for over these next few months. I am hoping and praying that it will all make a difference and that I will be healed! However, as I said in my last post, whether He heals me or not, I will praise the Lord!

Sunday, March 25, 2018

So tired

I've never considered myself a super energetic person, but about five and a half years ago, when Silas relapsed with cancer, I found myself dealing with a whole new level of tired. Sure, the previous 6 months had been exhausting, taking him back and forth to the hospital for treatment, but this was more. I didn't sleep at night, I became exhausted all day every day. I started having back pain, neck pain, arm pain, leg pain, digestive problems, and I gained 50 lbs. Of course, I attributed it all to the stress of the situation.

After Silas passed away, I slept like a rock for the first week. It took me a while to get to sleep, I had to make sure everyone in the house was breathing, and I had to get used to the quiet - no more monitors or oxygen machine making noises. Once I was asleep though, I slept like a rock. It only lasted a week though. After that week, I didn't sleep well at all. It took me forever to fall asleep, and many nights I felt like I got no sleep at all. I would look up at the clock at least once an hour, and although I think I probably dozed off a few times, I went many nights with very little sleep. I went to the doctor and got some sleeping pills, which caused my insomnia to be even worse. I weaned off of it, but my insomnia, fatigue, and pain persisted.

I thought for a while, that my physical troubles were caused by the 50 lbs I had gained. It took me over 2 years to get off what I had put on in about 8 months. Looking back now, I think my weight gain was a symptom, not the cause of my problems. I'm still overweight, but minus those 50 lbs I gained while Silas was sick.

I have radically changed my diet. When Silas was sick I was eating cookies and cake, caramel frappuchinos, fast food, prepackaged food, frozen food, anything that was quick and easy. I am totally a stress eater, so I ate a lot too! I cringe when I remember some of the things I ate during that time. I didn't realize that I was poisoning myself. Now, I eat a low carb, high fat diet. I eat vegetables every day. I drink mostly water. I no longer drink caffeine, or eat sugar, gluten, or dairy (except for butter). I'm constantly tweaking my diet trying to get in nutrients and avoid things that I have negative reactions to. I don't eat perfectly 100% of the time, but I eat much better than I ever have before.

I have tried various herbal and vitamin supplements. Some have helped, others have not. I find I am sensitive and likely to react negatively to a great many supplements and medications!

Endometriosis and Adenomyosis was something I had dealt with since I was 11 years old, and sometimes wondered if that was the real cause of my pain, fatigue, and insomnia. In October 2016 I finally had surgery for that. My pelvic pain was completely relieved by this surgery and I am so very grateful that I was able to have it done by a specialist. I think this surgery was an important part of my health journey, but it didn't solve all of my health issues.

It has been over a year since the surgery, I'm still tired, still don't sleep well, still have digestive issues, food and environmental sensitivities. I have shortness of breath, chest discomfort, lightheadedness, and nausea from POTS. I get headaches often, my allergies are horrendous, post-nasal drip drives me nuts, I get brain fog. Then there is the pain. I feel like I am always carrying around a 100 pound child on my shoulders. This makes it hard to stay up on my feet and causes a tremendous amount of pain when I am active (and by "active" I mean doing normal things like going to church, or the grocery store). Some days my whole body aches, even my eye lids! The slightest touch can cause pain, a pat on the shoulder or a hug can make me cringe. Other days, I'm just exhausted with little to no pain. Being exhausted without being able to sleep well...I don't know the right words to describe how that feels. I don't know what it feels like to NOT be tired.

I feel like I am trying to walk up a steep grassy hill covered with dew, carrying that 100 pound child on my shoulders. Every step I take is difficult, I am in excruciating pain. With every step I slip a little on the wet grass. I can't ever make it to the top. I want to reach the top because there I can do things with my sons, run, play, go out, take trips. I want to be able to get out of bed in the mornings and do chores, go to church, cook breakfast for my family. I want to be able to keep a clean and organized house. Sometimes I lay in bed and look at the piles of clutter and envision putting things away, getting rid of things, and making it all tidy, but I can't actually do it, my body won't let me. I want to serve in ministry at church, invite people over to our house, and offer encouragement to other women. I keep slipping and I don't know how to gain ground.

Some may be surprised to read this. I don't look sick. I go to church, I go to events and activities. What you don't see though is that when I am out and about, I am aching to come back home and get in bed or crash on the couch. Some days even just carrying on a conversation utterly wipes me out. You don't see me when I am at home and my kids are asking me questions and I just don't have the strength, so I answer them with "I can't think right now!" Some of you know though, some of you have listened to me talk (sorry, I know I talk too much!), some of you ask how I am doing and try to understand and offer support.

I'm in the process of seeking help from a Functional Medicine Doctor. This week is my appointment to go over my extensive test results and talk about what to do moving forward. I hope this will be helpful. I pray that she will have wisdom and offer me good advice. I believe the Lord has told me I need to slow down, I have been doing too much and need to take a period of time to rest. I've also found a Christian support group for people with similar symptoms and I am really excited about that. I think there are answers, I think the Lord is guiding me. I'm trusting Him to do a work in my life.

Today, I was looking up scriptures to encourage someone else, and I found one for me. Psalm 94:18 says "If I say 'my foot slips', Your mercy, O LORD, will hold me up."

Whatever happens, whether I am healed or whether I am always sick, I choose to praise the Lord. He is everything! Blessed be the name of the Lord!

Wednesday, November 1, 2017

The Mediocre Doctor

I have this idea in my head for a story. I've actually started writing it, but haven't gotten very far. I love the idea that is in my head, but when I begin writing, it starts getting too complicated. I want it to be a short story, not a novel. It might make a good episode for the Twilight Zone. Not too creepy, but a little creepy Well, not very creepy at all....unless it really happened.

I already have a name for this mediocre doctor too. His name is Jeremiah Jones.

Monday, October 30, 2017

POTS

Postural Orthostatic Tachycardia Syndrome. Although I only heard the term recently, I have had the symptoms since my early 20's!

In a nutshell, it means that my heart beats too fast when I stand up. So when I stand up, my heart may beat as fast as someone who is running a marathon! This means that I am always tired. I wake up tired every morning, I feel tired all day, and I go to bed tired at night. I also have digestive troubles, brain fog, and whole body pain that seem to be associated with this. Some days are better than other days, and I seem to have periods of remission (especially when the weather is cooler and pleasant), but some days, getting out of bed is nearly impossible. Hot weather, showers, hot water, sugar, carbs, big meals, and standing up are my enemies. Salt, fluids, smaller meals, light exercise, my bed, and chairs are my friends.

I still have a lot to learn about dealing with this. Part of me is relieved to finally know what is wrong, and part of my is frustrated that there isn't a quick fix. I think I am making progress though.

Right now my plan is to...
Take it easy when I need to.
Be more consistent with my exercise.
Stick to a low carb, high fat diet.
Increase my salt intake.
Drink plenty of fluids.
Learn what affects my heart rate by continuing to monitor it throughout the next year, making note of what seems to make it better or worse (weather, temperature, activities, food, etc.).

So be patient with me. I might misread your email or text, you might have to repeat what you say to me. I might not make sense, forget to finish my sentence, or use the wrong word, (Thinking and talking while standing can be a challenge when my heart is racing). I might have to sit down or lay down often throughout the day just so I can function. I might look healthy, but my body is not always working like it supposed to.

I know that God can be glorified in this, and that is my greatest desire. Be glorified in my life Lord!




Saturday, October 21, 2017

Why haven't I been blogging?

Am I too busy? Do I just not to make the time? Hmmm.

I have thought of many things to blog about. Lots of ideas rolling around in my head. Sometimes I write whole blog posts in my head, or even on the computer, but I don't post them. Why not?

I really enjoy writing, but I don't do it as much as I feel like I should. Am I just lazy? Do I need more self discipline? I'm sure I do!

A conversation I had today made me think of a blog post I wrote years ago. I started looking over my blog and I started thinking of why I don't post much, especially since I have so many ideas about writing! I think one of the main contributing factors is that I simply care too much about what others think. I worry that I will say the wrong thing and offend someone. I am afraid I will say the wrong thing and steer someone in the wrong direction. I am afraid I will make someone upset with me. Not that I shouldn't care at all. I should be conscientious about what I write. Perhaps though, I should't worry so much what others think of me.

Wednesday, November 16, 2016

Recovering

I am now 19 days out from surgery. I thought I would share how it went.

Wednesday Oct. 26th. Archie and I dropped our boys off at church and drove up to Atlanta to stay with cousins. We arrived right at 11 pm.

Thursday Oct. 27th. We decided to give ourselves plenty of time to get to the Center for Endometriosis Care. It was only 30 miles from where we were staying but traffic that time of morning in the big city is crazy! It took us nearly 2 hours to get there. We arrived just a few minutes before my appointment time. I couldn't believe I was actually there! I learned about the CEC years ago and always hoped some day I would be able to get treatment there. Their Doctors have fantastic reputations for removing endometriosis, thus providing long term pain relief from this disease.

The nurse, staff, and doctor were all very kind. Everything was explained about the surgery. Adenomyosis was also suspected (causing a very painful uterus), so we decided to do a hysterectomy as well as excision of endometriosis. It was a big decision, and not one we took lightly, I did a lot of research and prayed about it beforehand.

After my appointment Archie and I did a little shopping, we got a few soft foods for me to eat after surgery, then we went back to where we were staying and I had to do a "bowel prep". It was not fun, I was not allowed to eat anything after breakfast and the prep made me nauseated. I spent the day between the toilet and bed.

Friday Oct. 28th. We got up early and headed to the hospital at about 4:30. This time it only took us just over half an hour to get there. We walked into the hospital about 5:15 am and registered. Right at 5:30 I was escorted into the surgical prep area. Archie had to wait in the waiting room but I was able to bring Sammy in with me. Sammy was one of Silas' sea turtles, his first big on that he received for his 4th birthday from Grandpa and Grandma. He took it in to all but his first surgeries. I didn't know if they would really let me keep Sammy with me, but I was going to give it a try. My PTSD was getting stirred up being in a hospital. Going through all of Silas' cancer treatments, spending so much time in hospitals, and having to say goodbye to him, have all left a lot of painful memories.

I changed into a hospital gown, they put in an IV and drew blood. They gave me a pill to swallow and then gave me some "happy juice", just like Silas received on many occasions. Archie was allowed to come in and spend a few minutes with me before they wheeled me back to the OR. He prayed for me and gave me a kiss and went back out to the waiting area. When I arrived in the OR the Doctor and Surgical assistant grabbed my hands and the Surgeon prayed for me, he prayed that he would do a good job and that I would be pain free in the future. I scooted onto the surgery table and then I went to sleep.

The surgery lasted about 5 hours, just a little longer than the estimated 4. I was in the recovery area for a while. I was in pain and disoriented. I asked the nurse if they found endometriosis during the surgery (it cannot be seen on any scans or tests so the only way they can know if it is there is to look inside), she said yes and I started to cry. All of these years of pain and it was finally confirmed what I had believed for years. I say I started to cry, I quickly stopped myself because it hurt too much. I remember talking about Silas a lot. Sammy was still with me. I don't remember what all I said. After a while they moved me to a room and Archie was allowed to join me. I don't remember a lot. Later that evening I was up and walking. I was still using a pain pump and they gave me some pills as well. I think I slept pretty well, the meds made me sleepy.

Saturday Oct. 29th. About 7:30 in the morning the Surgeon came in to see me. He went over my surgical photos with me and explained that in addition to what we thought was wrong, he also found a lot of adhesions, some from my gallbladder surgery. He removed those as well as my appendix. I finally had stage II endometriosis confirmed! Stage II is the most common stage to be discovered. He was happy with my progress and released me to leave the hospital. Archie and I pretty quickly got ready and headed back to his cousin's house. The drive was somewhat painful, I had 3 small incisions in my belly and was wearing a "belly binder" for support. I was told to start my medicine routine as soon as we got to where we were going. I did, pain meds every 3 hours around the clock. This was not pleasant, I hate meds. I hate having to eat to take them. But I was in pain. For the next few days we ate, slept, watched movies, and slept. I don't remember a lot of it due to the meds.

Tuesday November 1. We got up late in the morning and packed up, well, Archie packed up. We headed out to my 3 pm follow up visit at the CEC. The surgeon again explained my surgical pics to me and answered a couple of questions. They were impressed with my progress and suggested cutting back on the meds. Which I planned to do as soon as we made it home. I didn't think I could make such a long drive without them. We left and headed home, stopping every hour to walk around and stopping to eat. It seemed like it took forever but we made it home about 10 pm. The  boys were home waiting for us.

Over the next couple of weeks I have gotten stronger and had less pain but it is still early in the recovery process, they said to expect 8-9 weeks. I was warned not to over-do it and to get plenty of rest in the coming days. I haven't taken any pain meds in a few days. I no longer wake up in the middle of the night with outrageous cramping! While I am still tender and tired, I am making progress and am hopeful that in time I will be strong, healthy, and finally pain free!

God is amazing! I know that He was in this, and I am so thankful. In my life Lord, be glorified!


Thursday, October 20, 2016

God is so good!!!

God is so good, God You're so good to me!

I don't know why I bother worrying. I am learning not to! God takes care of everything. He provides, He cares, He loves us so much! He so often shows up in unexpected ways bringing unexpected blessings.

My surgery is actually happening a week from tomorrow! The Lord has made provision for this to happen and I am so very thankful to Him!

The boys will be taken care of while Archie and I are away, the bills are provided for, we have a place to stay in Atlanta, and Archie has the time off of work!

Yes, I know, I am using a lot of exclamation marks, but I am feeling so incredibly blessed and I hope that comes across in this post. I want everyone to know that the God of the Universe is awesome, all powerful, amazing, AND He loves us! He loves you!

John 3:16 For God so loved the world that He gave His only begotten Son, that whoever believes in Him shall not perish but have everlasting life.