Feeling heard, and communication frustration.

Often a person with a chronic illness goes from doctor to doctor searching for answers, help, validation. We are often simply looking to be heard. We are often dismissed, and made to feel no one will ever truly listen, and hopefully help.

On July 27th I saw the PA from my doctor’s office. She was giving me nerve blocks for my migraines. She went over everything beforehand and asked ME where I thought the blocks would help the most. She also examined me and found some very tight muscles, so she gave me blocks there too. I was so impressed. She took her time, and really listened. I did not feel rushed at all, yet they are always on time for my appointment.

I now have a Botox treatment set up, and my next nerve blocks scheduled.

My insurance still hasn’t approved my inpatient stay. Hopefully it will be soon. Of course all my appointments may need to be shuffled if I get approval. They call and say, “can you come now?”. We’re 2.5 – 3 hours away, with pets, it’s hard to drop everything and get going. Luckily we found another pet sitter and our dog really likes her! She doesn’t like anyone (except my sister, but she 3000 miles away),we are so relieved. It really makes things easier.

We spent the night in Phoenix and were able to spend time with Dad’s (Stuart’s father’s) cousin. She is such a doll. She’s visiting her best friend since grade school, amazing right?!, she lives near Phoenix so it was easy to squeeze in a visit while we were there.. Both of those women are amazing people. I so enjoy every visit we have with them.

UPDATE!

Found out day before yesterday that insurance approved the ketamine treatment on the 18th of last month! They simply didn’t tell anyone! How can insurance companies get away with this? They did send us a letter saying they had approved a treatment, but didn’t say what it was. We thought it was for the nerve blocks. When the hospital asked them to fax the approval, they sent the letter they sent to us! What the heck? At least they found that it had a code on it so they understood it.

Stuart has been playing phone tag with the hospital because he got a message that I need a blood test and EKG. I didn’t’ last time, I think they did it when I got there. Still waiting to find out what that’s about, and if I need it beforehand, where do I get it? I really don’t want to go to Phoenix for it.

I also hurt my hip, the one that was replaced 7 years ago, I was very afraid that it would interfere with my trip to the hospital since I move a lot during the treatment. I know wouldn’t be able to be mindful of how I’m moving my hip during it, but suddenly it seems to be much better. Night before last I moved a certain way and my hip popped, it was very intense pain that caused a very sharp pain down my leg, today I’m moving better and feeling little to no pain from my hip. hmmm, could that pop have been a good thing? I’m just thrilled I don’t feel I need to see an orthopedist before going inpatient for the ketamine treatment.

ANOTHER UPATED

Well if I’d actually publish this post I wouldn’t keep getting new things pop up….but then again, probably not.

I am going to Barrow on Wednesday, August 10th, to get the EKG and blood work. Yes this is a new requirement…who knows why. We’re hoping I can be admitted the next day so we can just spend the night in Phoenix and not have to return to Tucson. Cross fingers and toes.

Now I’m going to actually close this post and publish it.

I’m in a lot of pain right now despite taking meds, but they are making me sleepy so I think a nap my be in my immediate future.

Round two anyone?

Not edited, stream of thought:

I’ve been away for quite some time, I hope no one has missed me too much. Or maybe I do, I dunno, I kinda like the idea that someone out there missed me….oh that sounds weird, like I think no one cares, I know people care I’m being weird. Speaking of weird…

After the amazing results from the Ketamine treatment I had in early may, it ended when I had two falls and a concussion. Yikes!

Since May 31st I’ve, once again, had a constant migraine. This one is very high all the time. I’ve had no respite at all.

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Okay, did they change the way you post photos into WordPress…OMG that was hard and now I can’t move it!…..anyway, this is what happened: Damn I look old, and really messed up. Whew that had to hurt…oh wait I know it hurt, it happened to ME! So surreal.

I went for a walk, and fell, flat on my face, didn’t even get my hands out to brace myself. It felt as if someone had pushed me from behind. (uh oh…Meniere’s drop attack..damn) Stuart and his father were in a restaurant near by (their conversation got boring, hence the walk) I came back to the restaurant and every head turned to me with, what I can only describe as, fear and fasciation. I walked over to our table and Dad looked white, Stuart turned and saw me and jumped to his feet very alarmed. The waitstaff swooped me up and took me to the bathroom to try and clean me up some. Then I saw myself. Blood covered my face, I shouldn’t have been surprised, I had tried to call Stuart when I fell, but smart phones don’t work when they have blood on them. My lip was severely swollen and there was a big gash in my forehead. They tried to clean me up the best they could, but they couldn’t fix it. I ended up in the ER, luckily one that wasn’t busy. They cleaned me up better and glued my head back together. My tooth tried to come through my lip, but since it didn’t go all the way through there isn’t much they can do, getting stitches there has too much of an infection risk. It’s all okay now, I still have a ridge inside my lip, probably a scar I’ll always have, and I have a cute little scar on my forehead. Nothing broken…not even my glasses…which is really weird, they didn’t even fall off or get very scratched. Really, Really,Weird. I had a scrape on my leg, didn’t bleed really, yet I can still see it….again…weird.

I saw my doctor week JULY 6TH!! and I’ll be going back into the hospital for another round of Ketamine soon. (If insurance ever gets their act together!) I’m also getting trigger point injections where the concussion was, and nerve blocks in the occipital region on July 27th. She also increased preventative meds that I’m already on, and discontinued some acute medications because they weren’t working. I feel like a zombie every morning when I take my meds, yet the pain is still very real! I’m also getting a migraine cocktail infusion every week now. It doesn’t last long, and it’s so hard to find a vein on me I have questioned if it’s worth it, but she just changed the orders up on that too, so we’ll see. One person is wonderful at getting my veins, another hurts like H and I told him to stop, and another is decent, but it still hurts and I always have a big bruise later. As long as I get a few hours of relief, I’ll continue to do it.

Just because I’m going through all this doesn’t mean I’m not here for my friends. Anytime anyone needs to talk, reach out. It makes me feel like people still think I’m worthy, instead of someone you don’t “bother” because they are ill. I remember family members doing that to my mom, and it broke her heart. I’m still a person, I can still be a friend. I might not be able to respond immediately, but I will. I don’t like feeling like I’m not a good friend anymore. I know there are a few people who will think I’m talking to them directly, but I’m not, this is aimed at anyone who feels they can’t “bother” me. I do apologize for not reaching out more. Emailing…texting…I haven’t been very good at that. I’ll try and be better. I really do value my friendships.

If there’s anyone out there who has had, is having, or going to have ketamine for their migraines, I’d like to hear from you. I’d like to compare notes at the very least.

Right now I’m in a Spravato treatment. You may remember that Spravato is a treatment for major depression disorder, and it’s esketamine. Interesting all the things this “street” drug (or part of it) can do.

I’ll also try and write more here, it does help me, whey don’t I do it? I dunno. I’m basically staying in the dark, watching mind numbing TV (the brightness has been turned down). I’m trying to do more, even if it is a struggle…pushing myself through…way past the point of using all my spoons.