Month: May 2016

They don’t listen. Does anyone listen to me? Do they think that just bc I’m disabled or bc they’re ‘abled’ they know better?

I’m really pissed at the way I was treated by Mayo this time. At no time was I given a voice over my own care. They had a script they wanted to follow to treat my migraines and background pain that failed during outpatient treatment. It also failed during inpatient treatment bc it was basically the same.

The nurses were fantastic, but I have to say that the docs were not. I don’t know if they have some sort of hidden agenda as to the primacy of migraine or not, but they don’t seem to recognize cluster headaches. There is no protocol on how to treat cluster headaches and they don’t really seem to be interested in it either.

At no time did a doctor really listen to me. I thought Dr. M did, but reading her notes on the patient portal, she wasn’t listening either. She was hearing what she wanted to justify the protocol. I only saw Dr. V twice and that was for her to say that even though I don’t see her, she knows what’s going on and then again to basically say goodbye. She’s going on sabbatical and I’m being handed off to another one of the neurologists. The rest of the time, other docs came in and made judgments about my migraines and medications. I kept trying to correct them, but no one would say clusters.

The night before I got out was hell. The triad of docs had visited me and told me that I wouldn’t be getting any more pain meds or tranqs and that I was being released the next day. (I was nowhere near release, especially if they took the meds away.) I explained to them, as I had before, and begged them to leave me on my normal regimen until I left the hospital. I knew my clusters and I knew what would happen if the shield went down. Nope, no more meds. I told them, fine, you’ll come in tomorrow and find an oozing hot mess. They just looked at me. I think they were androids. Around 21:30h, a cluster came on that was a little more than I could handle. I had a great nurse and she was able to get something for me from the on-call. I went to sleep.

My 02:00 woke me up and was more severe than normal. I also needed to go to the bathroom. I had the little leg massagers on, so I needed help. The CNA came in to take the connecters off of my feet and help me out of bed. She escorted me all 1.5m to the bathroom and waned to stay in there while I peed. I told that that I was fine and could take it from there. She was being extremely aggressive.

While I was trying to get things together and my head cleared so I could remember how to tinkle, Jr. went off. I said, Jr not now. Be quiet and went to turn the pump off. All of a sudden, the door opens, she whisks me around, knocking me down with the pole and tells me to never touch the pump, that I’m never to touch the machine. By now, the fight had been triggered and I told her that I had been using that pump since she was born. She still kept fighting with me. She was very loud and aggressive. I still hadn’t gotten my pants above my knees.

The night nurse came in to do the 02:00 meds a little late and noticed the scuffle. She yelled at her coworker about the pump not being important and her having told me to shut it off. She apologized profusely to me, calmed me down and got me back into bed. I went right back to sleep. I woke up around 5:00 the next morning. I ate breakfast, had my morning meds and about 07:30-Boom! Level 9, nothing but O2 to use. Everything had been discontinued as of 6:30. I was out of my mind.

The triad came in one last time. I was begging them for something for pain, but they wouldn’t budge. It was obvious that I was in huge amounts of pain, but they stood there and talked at me. They talked about my discharge and what I needed to do and not do when I got home. I told them that I wasn’t ready to go home. I was sitting there crying and sucking down O2. Even the nurse told them that I wasn’t well enough to go home. It didn’t matter to them. The protocol had run its course and they had nothing else. I asked them what I was supposed to do? Go home and shoot Benadryl? Find a prescribing doc? Find a doc to prescribe pot? Nothing. I didn’t even get a reaction out of them. They just turned around and left the nurse to calm me down.

 

 

Well, this is fun. On 13/May I went to an outpatient Botox, nerve block procedure. Everything went fine with the occipitals and the left front super orbital. However the right superorbital was everything except nice. My body fought it the entire times. The Botox went where it wanted. It was a mess.

A couple days later, the injection sites were still sore on the right sides and a severe cluster had set in. (8-10 baseline with clusters spiking much higher). I contacted Dr.V and ended up going to the Infusion Center for daily med/painkiller infusions. The dilaudid was nice. It and Benadryl kept the pain to a dull roar for quite a while. Alas, since it was outpatient and the clusters are Legion, it didn’t do much good for me. Yesterday I checked in to Mayo until Saturday.

The docs and all staff are very nice, always. Sometimes it’s a little unnerving. The nurses and cnas are all excellent and go above and beyond the calmly of duty to help you and keep you comfortable. That is a nice change fro Diamond where only those who know and like you give excellent service. On the bad side, everything is a monolithic process. Teams meet, agree, issue and activate orders. It takes a lot of time for decisions to be make as they’re carefully weighed. It all works out in the end though.

My only other point of contention is that this facility deals with migraines, any kind of migraine. They have my migraines under control for the most part. However, I’m not sure that they are equipped to deal with clusters. I keep trying to explain how my body deals with this and they keep ignoring what I say. I’m going to have to be a little less nice about it. Benadryl works for me, Dilaudid does too. The bad news is that it’s a narcotic and has dependency issues (I’m aware of that and don’t have an addictive personality)  This 300-500  mg increase in Lyrica (same set of issues) is the same thing. Lyrica is another controlled substance with a wide profit margin.

train of thought just left and took me with it 😦

 

Hi everyone, I’m back.

its been awhile since my last post. February to be exact. A lot has happened since February. Mostly the clusters, my nephew moving in with me and my stupid mother (and family). I was in rehab in mid-April to be taken off of some of the drugs that I had been on for the last 500 years so that they could find some new combos. It was a big deal bc the more drugs they took me off of, they worse I felt. Brian didn’t want me to be alone in the house after I got out bc my adjustment period is never graceful, so he wanted my mom to come stay with me.

i asked her and she enthusiastically said yes when I asked her to do it. By midweek the following week, she still hadn’t sent me her plans, so Imcalled from rehab and asked her what was going on. ‘Well, Michael. You see I know you need me on Thursday, but aim have a procedure on Wed.(colonoscopy) and I don’t know how I’ll feel Thursday. (Gassy, I told her, gassy.) Then came the your father has an appointment on Th but will forget if I don’t remind him to go. (We have phones.) Finally cam the and I have a really important meeting on Friday that I really shouldn’t miss. (where they’ll send the church missions funds. They don’t have any money!). I just said fine, whatever and ended the conversation. Let’s just say Brian’s side of the family, including his mother had some very unkind words for her.

Now she will get the opportunity once again. I’ll be meeting with a neurosurgeon about this artery that’s trapped by the trimegial nerve and how to best fix it. It will probably be through surgery. We already know that it’s a big enough deal that My mother-law will be out here. However, going into strike 3 and with everyone and everything else that’s much more important than me, it won’t come as any surprise if she didn’t show.

If she doesn’t, I see no reason to keep the relationship going as much as that pains me. My relationship with my father has been deal, three meters under and very cold for a good 30 years. As far as my relationships with ,y brother and his kids, I haven’t talked to my brother in two years. There no relationship. There never was. It was never fostered. It certainly wasn’t a happy time, nor is it a time I like to revisit. I still flinch at the sight of hot wheels racetracks. And I guess, that’s how it will end.