Tummy Troubles

Sooooo...

Hmmmm....

Yeah.

This is a tricky topic. But one that is becoming more and more a problem for me. Gastroparesis has reared its ugly head. I've been having either constipation (mostly constipation) or the opposite for about six months now. I've adjusted my medication as much as I can, but it remains a serious problem.

It started when my migraine injection dose was increased. It completely shut down my digestive system. I mean 100%. It took a week and multiple drugs to help me over the hump. I never took that dose again, but similar issues have lingered.

I am gluten intolerant. Eating gluten tends to give me diarrhea. So lately I've been eating a little gluten here and there just to try and feel normal. It's not really working. I can feel food just siting in my stomach and not going anywhere. This makes me bloated and gassy. Wow! Can you say sexy? It just isn't moving along like it should.

I started taking a probiotic. Nothing.
Eating yogurt. Nope
Taking OTC stool softener and Metamucil. Huh uh.

Chair Zumba

I even started doing "Chair Zumba" with YouTube to try and get my blood pumping a little bit. It made me feel better in other ways, but did nothing for my tummy.

The only thing that has helped a little so far is this tea.

I found these recommendations online. 

• small, frequent meals
• avoiding raw or uncooked fruits and vegetables
• avoiding fibrous fruits and vegetables
• eating liquid foods such as soups or pureed foods
• eating foods low in fat
• drinking water during meals
• gentle exercise following meals, such as walking
• avoiding fizzy drinks, smoking, and alcohol
• not lying down within 2 hours after eating

Small changes in diet, such as eating soups, may help people with gastroparesis.

I'll have to give the recommendations a try. 

I don't know if this is just part of Mitochondrial Disease or a gift from my family? My mother said both she and my Grandmother have/had the same issues. All I know is it's new for me and something I'd like to get rid of.

STILL Adapting Our Home

I've learned to be much more patient about makovers and changes in our home. When I talked about "Adapting Our Home" back in February, I knew it would be a slow process. One we actually started in November. 

This was our first project. Converting the dining room into my husband's new office. All we need now is some different lighting. We have a temporary café table set up that can stay until I need to use my chair in the house. It is a space that works well for us. We both enjoy the coffee bar and the mini fridge is much easier for me to get things out of then our hard to reach big fridge in the tiny kitchen.

We just need to replace this chandelier with more appropriate lighting.

We keep trying to have a yard sale, but the weather has been against us. Our new projected date is April 1st. We have a garage full of items that will help us buy what we need for our new livingroom.

We need to do this in stages due to finances. It also reduces the stress of change for my man. He makes me go slow and consider things more and I goose him into action. It works out well.

Right now we have a dominating entertainment center. 
We will trade it in for a large flat screen TV on this wall.

What I'm most looking forward to is getting our couch out of the path of my wheelchair and away from our front door. But with the entertainment center gone, we could have room for a glorious "L" shaped couch... like this one I saw at Costco. Drool! Drool!

Max will never leave this couch again once he has a spot in front of the window.

I promised my husband he could have a lovely lit, corner bar in a recessed spot by the couch.

We used to have hundreds of DVD's in here. But who needs DVD's anymore?

I want a similar lit cabinet and some stands for my precious house plants.

It will look lovely and echo the bar.

The purging will continue right up to the yard sale. It will be a challenge to get rid of our couch, entertainment center and other huge items when the time comes. I'm thinking of using Facebook for that part. I really wish I could just wave a wand and have it all perfect. 

Reprieve

After my recent night of desperation I put into action some things that have been helping out my incredible pain.

1) Made a tote bag full of all my resources. Creams, gel, pills, patches. All the stuff I have for pain. Now instead of just laying in bed in pain I can grab that bag, go into the bathroom and choose something to try and relieve it.

2) I found my "stash." Back in 2020 I tried some CBD/THC products to help my pain and migraines. It worked, but I didn't like the side effects. I kept most of it and found that the high CBD low THC gummies did help my pain quite a bit. 

3) Tried something new! I found some new cream that so far helps better than any other topical product I've tried so far. All CBD. No THC.

I'm also being very watchful of my activity levels and how I use my leg. I'm trying to really be vigilant to give everything a chance to heal up. So far it still hurts, but not at all like it was. I'll take it!

Let's Leg It

My skin is doing much better. I feel very proud to have made something that helped it myself. I'm also feeling more confident and more "myself" since coloring my hair. But there's been something else going on that I haven't talked about. Leg troubles. I want to document it for myself here before I forget the details. 

In the last week of December (almost 3 months now) I woke up one day with what felt like a horrible shin splint in my right shin. It honestly felt like I had been running all night in my sleep. No injury. No trauma. It just was there. 

I tried resting it, icing it, putting a brace on it, keeping off it as much as I could. And every time I would think it was getting better I would get a sharp stabbing pain behind my kneecap and the process would start all over again. The shin splint pain changed to a radiating pain from behind my knee down to my ankle (and lately to my foot and toes.)

This cycle went on for about six weeks before I finally caved and wheeled myself to the doctor's. Sadly I couldn't get in with my usual doctor and even though the one I saw was very kind, she's not my doctor. I had x-rays done, an ultrasound and was scheduled for an MRI that's still three weeks out. 

Keeping off my leg as much as I can

But... my pain has been so intense that I messaged my regular doctor about it. He just saw me Monday. He was concerned and ordered labs and for me to see a sports doctor friend of his who knows leg anatomy like the back of his hand. Get it? Anatomy humor for you.

My labs came back mostly normal, but three indicated inflammation markers that concerned him. I had also shared with him that my immune system has been particularly off lately. Along with my complexion going to hell I've been getting hives off and on and red spots in different places. I'm managing it by taking anti-histamines and using topical hydrocortisone cream. My doctor thinks this might be connected to my knee.

The sports medicine doctor got me in to see him the very next day. He was a wonderful man who took his time with me. He examined me and agreed with my doctor that it is likely something autoimmune happening. He suggested I get a referral to see a rheumatologist. 

He explained that my leg pain sounds like it was muscular to begin with, but turned neurological over time. He expects it will go away on its own (which was a big relief to hear.) He suggested some CBD ointment. And if that doesn't help some CBD/THC ointment or/and tincture.

I appreciate how out of the box a lot of doctors think now and aren't just stuck on prescriptions. Even though he admitted I'm already taking everything he would recommend.

So that's where we are right now. My doctor suggested I take 650mg of Tylenol for Arthritis 3x a day along with Diclofenac 3x a day. (I use my prescription Diclofenac/Voltaren along with Penetrex 3x a day.) I just ordered some CBD lotion to try.

Next steps are waiting to hear back from my doctor and attending my MRI on April 4th. The thought of seeing a rheumatologist again makes me nauseous. The last time was when this all started with a bang. Sudden muscle weakness in my legs and me sobbing in the hospital parking lot. It will be hard for me to forget all of that and move forward. But pain is a good motivator!

Confidence

My self confidence has always been sky high. Mountain high. Olympus high. Not in a bratty way, but I have a history of feeling good and getting what I want. Or making what I want happen. All of that went out the window when I became disabled.

I thought I knew what my life would be like. Or at least a big part of it. Then it all changed. I felt and still feel the impact of that. A lack of control. In a good way it shows up as mindfulness and a lack of attachment that the Buddhists talk about. In a bad way it shows up as my confidence being shaken.

Not feeling sexy.

Sometimes this can look like not feeling sexy enough for my partner or myself. Because of my intense pain I have limitations. This can make me feel guilty, upset, depressed or angry. Lately I was looking at pictures of myself and seeing an "old sick woman." This isn't the first time it's happened either. I talked about it openly here. And here. And here. I definitely I have a "thing" with my hair.

My mom reminded me today that my hair has always been an outlet of creativity and self expression that I've been messing around with since I was 13. Always different colors, lengths, styles. It's just something that I do and have done. It's healthy for me.

So here I am once again coloring my hair. What am I hoping for? That I will feel more like "my old self." My "healthy" self. Even if it (obviously) won't cure me. I'm hoping I might feel a bit prettier and sexier. There are many things I can't change, do or help with my body. But there are things I can.

• What I wear
• How I'm intimate
• Hair or no hair
• Hair color
• My sexuality
• Mobility devices (Yes! I consider them an extension of my body) 

Although it may just look like hair color to an outsider, to me it's much more than that. It's body autonomy. It's my "look." It's me.

Weapon of choice. Very close to my natural color.

I also think it's time to start wearing bras regularly again. Hah!

Face It

My skin has been a hot mess lately. Huge pores, blackheads, pimples, you name it. I don't know if it's stress, a gift for "welcome to 50!" or hormones, but it has got to go. I have been feeling like I'm fighting a losing battle with my face.

I was looking online last night at some "good" store bought remedies. Not only did they cost a fortune, but they were full of chemicals. Even the "natural" ones. So after researching some of the ingredients that were helpful for acne I decided to make my own. "Hell! I own French lavender, aloe vera and rosemary bushes!" 

Here's the recipe I'm trying out. I invented it all on my own.

Compound (I put all this in a pot)

1 big bowl fresh French lavender heads (about 4 cups)

2 small springs rosemary

1 very large aloe leaf, split and de-goo'ed

2 tbsp coconut oil

2 tbsp olive oil

2 tbsp apricot seed oil

2 tbsp castor oil

2 cups distilled water

Steps

Bring mixture to a boil

Boil for 5 min

Lid and bring down to a simmer

Prepare small jars (1 cup), one for each treatment. Write on the lids what each one is, or label...

Soap

1 tbsp Pure Castille Soap

4 drops tea tree oil (natural disinfectant, good for acne)

Mixture

Lotion

1/2 tsp rubbing alcohol (as a preservative)

Mixture

Mask

4 tbsp European Clay

1/2 tsp rubbing alcohol (as a preservative)

Mixture

Simmer for a full hour

Strain (Press down to get all the oils and aloe from the pulp)

Add mixture to each jar evenly

Yields 3 cups

Bonus: Drink your water and listen to music while you wait.

Super Extra Bonus: While waiting put full fat whole organic yogurt on face. (share leftovers with your dog/cat.) Let stay till firm. Wash off and pat dry. Smear pure coconut oil on your hair and scalp. Cover with a kerchief or shower cap and let sit till you're done with your project. Wash off with shampoo and massage your scalp with warm water. Follow up with an apple cider vinegar/water rinse for the ultra treatment!

Why was my main ingredient lavender? Because it's a natural anti-inflammatory that's good for treating acne. It is also a natural calmer and can speed up the healing process.

Olive Oil: Has a similar lipid makeup to our natural skin. Helps with cellular regeneration.

Castor Oil: Anti-inflammatory, anti-microbal, immune system support. Great for acne.

Coconut Oil: Calms red skin, moisturizes and is easily absorbed by the skin.

Apricot Oil: Helps immune system like lavender. It's high in vitamin C and E so it works to fight acne and smooth my skin.

All oils help the skin retain moisture, my skin runs on the dry side so I need it.

European Clay: Is a favorite of mine. It naturally draws out impurities from the skin and gives the appearance of smaller pores. It works a lot like activated charcoal without the mess.

Aloe: Non-irritating and great for all skin. Healing properties. Moisturizing and anti-inflammation elements.