I’m a Badass!

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I survived my Botox injections yesterday. My regular doctor did them and started with the migraine portion and went down my neck and down my spine and back, to my bottom, and back up thru the other side. I then flip over and we start on the front. When he reaches my abdomen is usually when my screaming starts. It hurts so much.  After, I calm down fairly easily.

My husband is always looking after me. He’s so caring.

After, we spoke with the doctor.  Cleared some things up. We made another follow-up appointment. For October.  Right before our 16th wedding anniversary.

We headed to the car, well, the lobby, hubby picked me up. The dentist was ready for me, so we headed straight there. Skipped lunch. Had my crown repaired. X-rays, no cavities! In fact, no extra work to be done. Mold for mouth guards (2) because if I drop one, and it’s inaccessible, I can’t go to sleep until someone is home to rescue me. And with my hands becoming fumblier and fumblier, it just makes sense.

I had to crawl up the stairs to bed, but I made it.

I need to return on the 30th June to fit the mouth guards and finish the cleaning he started. What a treat!

That’s the short version. I will get you the long version soon, as it’s pretty funny, but I’m really tired and the back of my head and neck are killing me!

Be well, my Zebras! 😘

Needle Day

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The past couple of days I’ve been in just incredible pain. It feels as if someone has been standing on my shoulder trying to chop my head off. It has been incredibly painful. Fortunately,  I had my Botox treatments yesterday, and they help immensely. I’m waiting for the juice to kick in, but they mix it with lidocaine, which helps.

He got my jaw and pubic bone good this time, I screamed at the pubic bone shot. He felt for the trigger point, I’ve known this doc for years, or it may have been my husband, they work together now. It’s sweet. I love the way my husband gives the doctor advice and he actually takes it. Aspergers isn’t all bad, also, being white, 6’5″ highly intelligent, male, and used to people listening to you helps. I’m usually in too much pain to do much more than grunt or squeak.  Husband translates. 😂

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The end of the session. My doctor ran out of there. I don’t think he likes my screaming. It is kind of intense. Not fun for me, either. You know how they say beauty is pain? So is walking.

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Since I only go out for doctor’s appointments, we commemorated the occasion of being fully dressed with a photo! This was before I learned the horrible news. Here’s my dilemma. My home scale says I’m 200.0 lbs exactly. It measures Andrew to what we’ve found is the proper weight on almost every scale. I went to the doctor’s office and was in a room I’m in only maybe 1/4 of the time. That scale weighed me at 210.0 lbs. Which one do I go by? The one I have access to? Or the one shoved in a corner that had files on it that I don’t even know is in use? 🤔 puzzled. (If this is my largest problem? Thank the Lord! Right!?!?)

My doctor is sending me to the EDS clinic at another hospital, which is confusing, because I thought he was starting an EDS clinic. Either that fell through, or we will have two? We can’t have two. He said the wait list wouldn’t be long, so that’s reassuring. I am starting to enjoy things and pains is getting in the way.

I enjoyed nesting this weekend. It was very enjoyable. I rested yesterday. I was hoping to come home and do some things, but no. That was too much.

My son came and cuddled with me. It was nice. I need more of that. 😊😊😊

Have a lovely day, Zebra friends!

 

So.Many.Needles.

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My Botox needles, ready to go, taken a couple of years ago.

One of the things I do to help manage my pain is get Botox injections every ten weeks. Just like for migraines, which I am also treated for with Botox, at the same time.

So this morning I had to drag my ass out of bed. I was not amused. 😁 I was really sore! I wanted to have a quick wash. In fact, I’d wanted a bath last night, but that just was not happening. I was too sore. I tried to move today, and my back spasmed, so I asked my son for a warm cloth to wash up with so at least I won’t be smelly, and I get the third degree! Why? Does it have to be warm? Why? Ugh! He’s 12, it’s not like he’s a baby.

After I convinced him of what I needed and managed to dress, I was able to hobble downstairs. Must have been so funny to see! Me hanging on to husband and kicking my feet out trying to loosen my knees up.

We got to the hospital and our appointment, and there is a nurse? Social services worker? I don’t know who she is, but ugh. She’s not kind. She calls you to your appointment, then disappears from sight. She doesn’t even sort of wait for you. Then she waves you to the treatment room. Hm. Onward.

The doctor comes in with two new doctors who are taking extensive extra training in Pain Management. We talk about how fascinating I am to have Ehlers-Danlos Syndrome, diagnosed late, even though he had been seeing me ten years. Hm. Hm. Botox injections are tricky things, only work occasionally, hm.

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The aftermath of needles in the forehead

Hm. Lucky me. And I am very lucky.

Then we start sticking needles in my head. As you can see from the photo, he didn’t clean me up before sending me home.

After the front, we move to the back, and he injects some near my jaw, I think,  but truly I just spaced out for a while.

I know we then did some near my neck and shoulder,  being careful around my throat so I don’t stop breathing. I hear that can be bad. We continued to my lower back focusing on the lower spine area, and the top of the buttocks.

At this point I have to roll over. Never an easy task in a gown on a narrow slab of table. Now imagine you want to preserve some dignity.

Here is also where my doctor starts to show off. He says to PMDIW (Pain Management Doctors in Waiting) “she has an entrapped nerve and is very sensitive!” As he touches my pelvis, the right lower quadrant, and I scream. The PMDIW look horrified and blanche under their South Asian complexions. They look like they want to bolt. I don’t blame them. Doctor moves on. He terrorizes my pubic bone. My face contorts in a silent scream. Husband grabs my hand. The doctor injects me as I sob. I tell him to keep going. Husband asks if I want a break, but I don’t. It will just be longer, then. The doctor starts on my right inner thigh. He pushes a bit. I wince. He moves over. I scream. I quickly slam my hand over my mouth, conscious of where I am,  but it hurts so damn much. I’m just sobbing now as he finishes the left leg, worn out from the pain, spacey, tired.

The doctors all leave. Husband helps me get dressed. That not a nurse or a social worker comes in and asks if I’m okay but is gone before I can answer. I can tell she didn’t care anyway. I’m known as the screamer. They tease me that I’m bad for business.

One of the PMDIW wants an appointment with me next week to talk about how sensitive I am in areas. It doesn’t seem normal not to be able to touch someone in an area, like my inner thigh or my abdomen. So maybe we can do something? I can hope!

So, I’m sitting here semi-bingeing on sweets, while my dear husband naps beside me. It’s bliss! 😍