Time Flies…


Hi there! I know I have been super neglectful, but the last couple of months have been quite the rollercoaster and I have not had the spoons to also actually get off my arse and keep you updated, so now the time has come.

Firstly, I finally got in to see a gastroenterologist  and a fellowship student. Hallelujah! They listened, asked questions and took my concerns seriously! I am on a few new medications, I can’t even begin to describe how much better I am feeling. When you go from pooping every 14 days to nearly every day, what a difference! My back pain has cleared up considerably. I have a number of tests to do in January, scopes and such, so hopefully we can learn what is going on. Rather annoyed this took so long, but was rejected by rather a lot of doctors.

My chronic migraines are leaving me so dizzy I’m having to use my wheelchair more than I would like. I was referred to another doctor as my new doctor is studying for a year, and I think it will take some time to adjust. First visit, he injected into my jaw and chewing has been a nightmare since. I see him in a couple of weeks, so I will discuss this. He seems nice, so it shouldn’t be a problem.

My vision is so bad I can barely see even with my new glasses, so I’m going to try to get that sorted. I think it’s the migraines, but who knows?

My kids are struggling with school attendance. They love school, but anxiety is high, and with autism and learning disabilities, it’s just not easy. They get pretty high marks, though, so I hope they can pull through.

I’m still having trouble sleeping. I’ve been begging for help for over a year now with no results. I was told I needed to see a psychiatrist as they are the only ones who know about sleep medications, but when I brought it up to my doctor again he told me it was a waste of a psychiatric appointment. I have no idea what else to do. I’m becoming suicidal and wondering how much longer I have to live before I can say I tried. When I spoke to another doctor about crying from exhaustion she said “oh, yes, so you’re depressed.” My jaw dropped.

So everything is fantastic, as you can imagine. I am so tired of fighting to be heard. It’s frustrating to say something to a doctor and have them completely talk down to you, then have my husband say the same thing and they suddenly switch on their understanding. For example: I spend most of my time in my bedroom, but I’m not lying down or sleeping,  I’m puttering around.  Doctor tells me I’m lazy and should do something so I will feel better.  Husband repeats what I just said, Doctor now understands that I spend the day doing crafts, playing with makeup and puttering. It makes me furious!

I’m going to take a break now and cry some more. I will try to be back to a more regular schedule. Perhaps not as mentally deranged. Although I have a sense of humor about it. 😜

Hope all your pain is fleeting!



2 thoughts on “Time Flies…

  1. Do you mind if I ask what they did to help you go to the bathroom? I found out I have a “tightened sphincter” but they are clueless what to do with it. I’ve wondered also if it’s tied into EDS.

    Liked by 1 person

    • I am on a couple of medications to help with motility. If my husband comes back upstairs I will ask for the names. I have sphincter cramps that are incredibly painful, my digestion involves a ton of heartburn, and I get intense stomach cramps. If I don’t go for 3 or more days the pain starts to come back. The scopes in January (I think there are 7?) are to determine if surgery is an option. I’m not certain what type of surgery would happen, but I will let you know. I found the fodmap diet really helpful, but the medication is amazing. I also have a ton of adhesions from Endometriosis so I suspect full bowels pull on organs and cause pain. The first step after the gastro visit was a date with a bottle of peglyte. Then I started the medicine. Medications include: Resotran, Salvent (anal cramps), Dexilant, Diclectin (nausea), plus Peg 3350 for a laxative daily. You may want to find a pelvic floor therapist. I just was working with one who is great, but with all that is going on, I decided to put a pause until spring. I think this therapy could help quite a lot, or at least be a starting point. I know my therapist works with men who have issues with premature ejaculation, etc, so it isn’t all pelvic floor focused. I hope you can find one near you! Much love and hugs! ❤🦓


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