The Doctor Appointment: or I’m the Girl with the Most Cake

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I attended the doctor appointment of intrigue on Monday, and found out SO MUCH INFORMATION! I have needed two days to recover. Also, my nerve blocks are wearing off, so please bear with me, my face hurts.

Well, it seems the lovely doctor who did my nerve blocks at the other hospital is now not able to be working at both hospitals. This may have contributed to communication breakdown. But it also means she had no reason to see me or take me on as her patient. When I sent her that desperate email, I had no idea, and she could have said, sorry, don’t work there. However, she took me on as her patient at the other hospital. I am so very thankful.

Now, the doctors at the clinic wanted to know how much I know, which was nothing.

The very first miracle was having the admin at the pain clinic bumping me up in the schedule so I could see the migraine doctor in the first place. I think she only saw a few people, and my husband was very nice to her, as he just is, and she knew how much pain I was in, so she got us in right away. I don’t think she brought many patients with her back to her clinic.

Now, back to the appointment. Remember the scary, nasty woman who worked there? She was in charge of this appointment. She was a ray of sunshine. I believe it was finally having job-related duties. Anyway, we had a lovely conversation. Originally, I was sent back to this clinic to get off of an inappropriate medication. Then she asked some questions. Who has been following up with me? No one. What are your other issues? Well, I spoke about my knees, arthritis, we are going to the arthritis society, it’s not too bad.

My pubic bone. I spoke about being laughed at and dismissed by the EDS Clinic. She looked concerned. I told her that it might not be an EDS issue, but it still hurts, and even if he says it shouldn’t it still does. Then it clicked. I told her it might be an injury from my daughter’s birth. They tried to keep her in until she was 37 weeks, but she was an oz short of 8 lbs. The doctor had to stand on the table during my c-sections and rip her out of my pelvis. The only reason I know is because my husband is 6’5″ and could see over the curtain. He turned white (er). He didn’t tell me until later. She looked at me in horror.

I told her about my back pain, which she blamed on inactivity, of course, but my husband jumped in and mentioned it was our original reason for visiting the pain clinic, and how I was improving for so long.

When I thought about it though, doesn’t it make sense that the back pain is the other side of the pelvic pain? Duh. I really am ashamed it took me 16 years to figure this out. Not to mention I was in labour for 2 days with my son slamming against my pubic bone. They gave me an epidural for the pain right away. Then when they looked at the ultrasound realized he wasn’t going to fit. I am 5’8″. I’m not some little, slight, thing. Oooh, fun fact. While I was still under the illusion of VBAC I received advice from Michelle Duggar, who was on kid number 8 or 9 at the time.

When the doctor came in he told me he had given me one round of Botox injections. I agreed. We then went through everything again… at which point I corrected him and said: Dr, you gave me two sets of Botox, and a guided nerve block under anaesthesia. He was not like being corrected, but was kind of… okay! Knows her stuff!

At the end of the meeting, he was unimpressed no one was following me. We were expecting to see an appointment at the EDS pain clinic in September. So he booked me for a full exam in July.

Surprise! We have an appointment with the EDS Pain Clinic mid – June! So we are going to let the other pain clinic know, just for transparency, and see what they can offer. Another Miracle!

It was so amazing, I called my Mom as soon as I could, as my spoons came back, on Monday. We are so different! I was marvelling at the miracles and my luck, my Mom wanted to know how everything got so screwed up! She said everything should be perfect! Well, yes. It has taken me so long to get over that expectation. Sometimes miracles happen when things are messiest. I can’t demand perfection when I live in chaos. My daughter has perfectionist tendencies and it nearly cripples her from doing anything. It’s painful to watch.

Embrace your imperfections. They are some of your most endearing qualities!

I am still working with the Cefaly! I will give you an update in a couple of days!

Intrigue…

giphy3In my previous post, belatedly posted, we established I have chronic migraine and messages between my doctor and me were not being relayed through the clinic, like they were supposed to be. My doctor was displeased, but I saw her at her home hospital, and I am on the pain clinic waiting list at the EDS hospital. The issue is, not many doctors hold a license for prescribing one drug I am on, but have been trying to quit, but my doc hasn’t had enough time to make that happen. Now it’s a priority. So I have to go back to the bad clinic for a bit.

Well, I just received a call saying there was a cancellation at the bad clinic and they called me right away because they know I am in need and they want to have a discussion about my needs going forward.

Anyone else sense a clinic about to lose a lucrative client?

I am certain my migraine doctor spoke up about leaving me hanging for three months. Part of the reason I hadn’t directly emailed my doctor earlier is I had once, and received a confirmation call from the nurse on duty who refused to speak to my husband, who is by my side constantly through this, and eleven years at this clinic, he has signed all forms indicating he is my proxy. She made it sound definitely not okay to be emailing.

Or, it could be just to refill my prescriptions.

Anyway, my migraine doctor recommended a new 20180525_120251.jpgmachine alled Cefaly. I hope it makes me look like Wonder Woman. I haven’t tried it yet. They zip tied the zippers on the case together and I thought I might sever an artery if I tried to cut it open. My husband opened it with nail clippers. Genius.

I am losing large chunks of my brain, it seems. I just can’t remember things. My brain is usually razor sharp. I’m forgetting how to spell! Well, but am I forgetting, or just screwing up? I wonder.

I’m starting to relax a bit. I hope to blog a bit more. Truthfully, Things have been tough. My parents follow me everywhere on social media, and are asking so many questions; after our distant relationship, it’s really hard to adjust. I’ve tried speaking with them, but I don’t think they get it. They imagine me talking to friends or my kids or my husband. No! Most of my friends deserted me. My kids are introverted teens. They talk to me when they need their Dad to understand something, and my husband gets up at 5 am, gets home at 8:30 and I may see him from 9:30 to 11 pm if he stays up late and I’m not in a sleep phase.

But things are getting better. I have more friends now. I’m not always sleeping. Though I have my weeks. My sister was here at Christmas, but the last thing I did with a friend was last June. Ha. Last time I even went out that wasn’t a doctor appointment. That sucks.

It’s just tough having your parents witness your every human interaction. My mom means well, but she offers opinions, and I take it as criticism (because it always has been in the past, even though she doesn’t mean it that way?), partly it’s great that people are treating me as normal, but I am really delicate still. I don’t get jokes much, (maybe it’s living with three people with autism?) Maybe I am too weak, still? I feel as if we are just going to end up hurting each other or saying something the other will misunderstand, because it’s easy, and I am in pain or the medication has made me fuzzy. But I feel too weak to have the conversation, too.

Blah, it’s awful. Does anyone else feel like this or am I awful? Or both.

On a lighter note, shortly after my Botox in July, I’m getting my hair done! Decided. 😜

Much love