Saturday, 31 January 2015

Stigma in Health Care

It's been a rough week.  I do have another post started but I will leave it for now so I can talk about one of the things that happened this week.

I had talked to my psychiatrist about coming off of one of my medications, Welbutrin.  I made the decision in anticipation of starting the new medication which I have written about previously and will write more about in the other post.  I was taking the 300mg XL dose and the next lowest dose is 150 mg XL, then I would go to 100 mg SR before stopping.  I thought things would be okay with maybe a bit of withdrawal.  I don't even remember how long I have been on Welbutrin but it has been years.  I guess I should have thought more about the tapering.  An autistic brain usually reacts more strongly to medication so we usually need lower doses.  I would think tapering would be the same.

I started tapering two weeks ago and things appeared to be going okay.  My food intolerances seemed causing me trouble but then I had had a lot of yeast lately and decided to do better with my avoidance.  I started getting worse and worse gastrointestinal problems including worsening reflux.  I still didn't think much of it except that I probably had another intolerance that I didn't know about.  Not something that hasn't happened many times before.

Monday night, I had a very scary incident.  The good thing is that Micah came to walk the dog with me that time.  It was sometime after 6:30, so it was dark already.  We were almost home when I suddenly had what I thought was one of my food intolerance dizzy spells but it was really bad and different in some ways.  I grabbed Micah, thus terrifying her because she wasn't paying attention to what was going on around her (and she is very jumpy due to the PTSD).  She froze as I continued walking and I had to tell her to get moving.  I needed to get home fast.  I couldn't explain how it felt.  I told her it was bad and it just kept hitting me.  It was like my body was detached from me even though I was controlling it.  Naturally, I had a panic attack on top of what was happening because I am very prone to doing that.  The slightest weird thing in my body will set off panic attacks because I am so sensitive to changes in certain parts of it.  Panic attack in addition to weird 'dizzy/jolting' spells equals terror.  I grabbed my phone and told Micah to call 911.  Micah does not make phone calls and can't usually ask for help but I guess instinct took over and because of what I had asked, she knew it was serious.  I tried to stay calm while trying to walk home, prompting Micah with the phone call, and walking the dog.  I know I set off my own panic attacks so I tried to keep it down especially for Micah's sake since she was scared.  I couldn't show how scared I was.  I didn't know if it was a heart problem (no pain though) or stroke or who knows what.  I really don't know what would happen if I ever let a panic attack take over.  I know my heart races so would I pass out or something?  I don't think I really want to know.

We managed to get back to the house and I locked up the dogs while Micah locked up the cat.  We were still waiting for the ambulance.   I sat and Micah stood and we waited and waited.  It took about 15 minutes for them to get to us.  I guess they decided it wasn't anything major.  I thought it was strange that the 911 operator didn't stay on the phone with Micah the whole time but maybe because I wasn't short of breath, they decided it wasn't as serious.  Still, she is a kid.  Her vulnerable person information isn't updated so they may not have realized that she is also autistic.  I guess I better get on that.  From what I understand, that information is supposed to come up if emergency services are involved with our house.

Eventually the paramedics (?) showed up.  The lady talked to Micah and the man dealt with me.  He asked me what I was feeling and I tried to explain.  He asked about medical problems etc. asked about chest pain and the usual stuff.  I made sure he knew I am autistic but I guess that didn't sink in or he didn't understand what that entails.  Autism can lead to communication mix ups and I was trying my best to explain what I was feeling at the moment without the time to process what I was actually feeling and put it into proper words. I didn't want to feel the scary stuff again either so I did the best I could with what I had.  I can't explain things, especially feelings, in an everyday situation so this one made it especially hard.  Next, I told the paramedic that I have anxiety.  I can't read facial expressions or body language but I knew for a fact that he changed the minute I said that.  Really?(sarcasm).  I knew it would all become about the anxiety and they would think it was just a panic attack. Just because I, and other people have mental health issues, many health professionals automatically turn to that as the root of our problems.  Don't check into other things, just medicate more.  I mentioned that I was tapering off a medication and that maybe it was some sort of withdrawal (not a proper medical site but there are some of the symptoms I was experiencing).  I know it can be dangerous at times and this is a medication which can cause seizures.  I was scared and I'm pretty sure I mentioned withdrawal a few times.  He asked about medications and I said I had a list.  He asked for it but I said it was in my head so he said he would get it on the way to the hospital.  The 'dizziness' was getting better but I decided I should go to the hospital since I was alone with Micah at the time.   I sent Randy what I hoped was a message that wouldn't make it sound too bad and told him I had had Micah call 911.  I didn't hear back for quite a while.

The trip to the hospital was interesting.  I don't think the lady had any clue where to drive.  Micah said she used a GPS and I know it took us on a round about route.  All they had to do was go right from the driveway to the lights, make a right, and go down the street a bit.  I'm pretty sure we went left and there were lots of turns!  On the way, I was asked more questions.  When we arrived at the hospital, the paramedic asked for my medications so I listed them all, including the new one (medical marijuana).  He said he wished he had known that at the house!  He had asked me to tell him my medication list on the way and it is one of my medications.  I am autistic and I took him literally.  I don't take the cannabis recreationally but it is a prescribed medication and therefore is part of my medication list.  I guess he now decided my problem was the marijuana.  I had taken two capsules so 0.2 gm, a very small amount.  I have never reacted to it before and never even been high from it.  It don't even think the type I got is even doing anything but that could be from the changes with tapering the other medication.

When we got into the hospital and they did the intake, the paramedic made a point of mentioning the marijuana to the nurse.  So now they think I am having mental health problems and I'm a druggy.  Perfect! (sarcasm again).  They made me sit in a wheel chair, pushed me out to the check-in desk and left me with Micah.  I guess because I am just having 'mental health issues and drug problems', they figured I was okay for them to just leave me with Micah in charge.  She is young, has severe anxiety, has not even babysat before and they leave her in charge of taking care of me.  We ended up in 'Yellow Zone'.  The not serious area but not the spot that they put people with just a cold.  We were there for a while and then my husband showed up after having tried to text and call.  He took Micah home with him and I continued to wait.  I was seriously tempted to leave but I wasn't sure what was happening to me.  The problems seemed to have settled down.

I finally saw a doctor and tried to explain again.  He did blood and urine tests.  More waiting.  Thyroid and whatever else they tested came back fine so guess what the doctor decided the problem was--medicinal marijuana, even though I have been taking it with no problems.  Great (yet more sarcasm).

I don't understand why most doctors won't listen to me.  My psychiatrist is good and my latest family doctor seems to be good.  For the most part though, doctors don't seem to listen.  It happens with my husband and many other people who are autistic and/or have mental health issues too.  I knew the anxiety and cannabis weren't the issues.  I knew there was something else, probably the withdrawal.

The next morning, I went to walk the dog and had a bit of a spell but not much.  I was feeling sicker and started researching Welbutrin withdrawal.  I found all sorts of stuff that was similar to when I stopped taking Effexor.  Gastrointestinal issues and all that that entails- yup have that.  Electric jolts- had that with Effexor but not with Welbutrin.  The spells that I was experiencing can be likened to that though.  It is not the same sharp zapping that went through me before but it is like something going through me.  I started holding my arms into my body and standing still when they happened (usually when walking the dog and a little at home).  I also noticed that the past week, even though I was wearing my weighted belt to walk the dog, I hadn't been as stable and able to walk a straight line as usual.  My brain also didn't seem quite right.  My normal autistic word retrieval problems and getting stuck were worse than usual.  One day, it was hard just eating.  I couldn't get the food down.  I was getting sicker.  Once I figured out that it was definitely medication withdrawal, I emailed my psychiatrist and asked him to call in a prescription for my original dose until I could talk to him at my next appointment.

I started taking my old dose and my gastrointestinal issues started going back to normal and my brain started getting better.  The jolts/dizzy spells were getting better.  I couldn't walk the dog yesterday because it was too cold but they have been very minor around the house. 

I went out for my first walk of the day this morning and as I was getting ready, I started getting a panic attack.  I knew what was happening and tried to fight it.  It was because I didn't go out yesterday and didn't know what to expect with my head.  The dog and I started out and I tried to keep my mind off of what happened Monday night(it's Saturday now and I've been writing this for a couple of days).  I did start getting a little funny feeling but I held my arms in and discovered that if I pop my ears (like you do on an airplane) I could take my mind off of it and keep myself calmer so I didn't go into a full panic attack.  I really tried not to think about it but my mind of course would not cooperate and I started thinking about what happened and past things that have happened to me (I likely have PTSD from various events).  I don't know how other people are able to focus on something else.  Maybe if I had someone to walk and talk with, it would help but I don't so I have to fight with myself to stay calm when things happen. 

The afternoon and evening walks were completely uneventful!  Finally.  Without question, things are getting back to normal for me.  Once I know the Welbutrin is back up to normal levels and I am feeling normal again, I will start the cannabis again and try the .2mg.  If that doesn't work then I think I need a different strain because it is not working like the other capsules I had.  Once I see my psychiatrist at the end of February, we can work out a much slower Welbutrin tapering schedule.

I guess the main point of this post is that doctors and other health professionals really need to listen to patients.  yes, they are experts, but we also know what is normal for our bodies.  We have had so many doctors ignore what we say but are lucky to have good doctors and psychiatrists now.  We are not the type of people who find something on the internet and decide we have it.  Just because there is a mental health issue, it does not mean everything is related to that and just because I am taking medicinal cannabis, it does not mean I am high or took too much.  I do know my body and yes I am sometimes wrong but I was sure it was neither of those two things.  I had even told the paramedic that I had a panic attack after what happened and both the panic and dizzy/jolt spells were cycling.  I did not have Micah call for a panic attack.  I am well experience with those and though they are horrible and I am sure I am going to die, I also know that it is just a panic attack and I can either wait it out or take my valium and wait it out.

Monday, 12 January 2015

Changing The Name Back- It's my right!

I think I am going to go back to the original blog name.  I can do that since its my blog!  No we aren't autism but we are autistic and it applies to our whole family and it is a big part of everything we do and how we interact.  The title does sound better the other way.  It might be that I'm just used to it that way.  I'm sure in the end it really doesn't matter.  Maybe it would if only my daughter was autistic and we weren't.  We wouldn't be an autism family, we would be a family with an autistic member.  I really what I am saying.  If anyone has any valid reasons on why the  title should be written one way or another then please comment.

Wednesday, 7 January 2015

All Over the Place!

I haven't been able to think about what to write lately. Things have happened but nothing super eventful that makes me feel like I need to write it down right away. Most of that part of my brain is currently focused on my two secret projects right now.  One of which will hopefully be announced soon!

At present, I am sitting alone at church in the sea of people. Most weeks, I don't care. This time I feel that I am heading into another of my bad times. Sometimes it would be nice to have a familiar person to sit with and share occasional comments.  That is not to be, so I make do with my fidget toys, drawing circles, and or writing. Today, my fidget is my Flappy Hands from Stimtastic.  They have great stim toys at a reasonable price.  I am writing this blog as well.  Usually I can focus on the sermon and write but this week I can’t focus.  There are many thoughts and feelings in my head but they are too mixed up and I can’t sort them out.  What’s funny is that I was looking at the new church webpage when I got home and although it is still being worked on, it does have some FAQ’s.  It has a great one that asks if there is anyone to help the person coming to the church.  I thought it was great and couldn’t wait to see the answer.  It was a big disappointment!  It doesn’t answer the question, the answer is more suited for another question.  Maybe it’s me or maybe there is another way of understanding the question?  I have good answers from an autistic perspective but I can’t speak for those who are allistic or have other disabilities though.

Before Christmas break, on the day of the snowstorm that canceled school buses, I found out that my medicinal marijuana prescription application was in danger of being declined. I had written the dose and my information before taking it to my psychiatrist. I originally put in 3 grams (average dose is 1-3g) but I changed it to 1 g using Liquid Paper to white it out before changing the dose.  Since my highest dose with the capsules from the dispensary was 0.1g three times a day, 1 g per day should be plenty. I do need a higher dose than I was taking but the amount asked for will be more than enough.  After receiving the email notice, I called the Licensed Producer that I had chosen.  They said the government is picky and the mistake should have been crossed out and initialed, not whited out.  I got really upset and panicked.  I emailed my psychiatrist and told him I was really upset.  I let him know the problem and asked if he would fill out new forms either at my next appointment which was not until February or if I could drop them off and he could contact me when they were finished. He got back to me and said I could drop off the forms.  I asked about office hours or mail slot and then printed the forms, filled out my part, wrote a note for him to know what to fill out, and put them in an envelope to drop off. The roads were really bad, but my daughter and I drove there. The best thing was that he was at the front desk so he did it right then for me! I'm very lucky to have such a great psychiatrist who will do that for me. I'm sure he was busy (but didn't have a patient) and he did it anyway and didn't ask me to come back for them later. In the car before mailing the forms (they cannot be faxed or emailed), I called the producer to make sure I had everything correct before mailing. I was told it would be helpful to photocopy some ID and add that in the package. I rushed home (slowly) in the bad weather and did the copy and put everything in an envelope. Then, I went to the post office and sent it express. It was a very stressful afternoon rushing all over the place in a snow storm and spending an awful lot of time shoveling!  I survived though without too many meltdowns.

After not hearing anything from the producer for a week or so, I finally emailed and they said it usually takes one to two weeks for approval because they have to contact the doctor to verify. Since it is Christmas break, it is going to take longer because offices are closed. I'm hoping to hear in the next few days.  I am getting anxious and figure it is never going to happen.  I have figured out how I will ingest my morning dose already.  The cannabis has to be mixed with fat and heated to work properly.  I have pancakes for breakfast.  They have oil in them so morning dose is taken care of! 

In the meantime, before Christmas my friend and I went to a local head shop (place to buy supplies for using medicinal marijuana) to get a small scale (regular kitchen scales don’t have small enough measures) and a grinder so I will be ready when I can finally order. I also got a book for more information on how to use the cannabis. It was an interesting outing!

Micah did well over Christmas break.  Her anxiety was higher at first because we found out that she had to have a mandatory needle by December 31. I don't know when it was made mandatory but she would've had it long ago if I had known. Her appointment was December 24 in the morning and we were due at my aunt’s for Christmas Eve that night. Since Micah had to have the one needle, I looked up when her booster was due. It was between ages 14 to 16 years, so I said we should do it also. She has a severe needle phobia. I put EMLA cream (numbing) on both shoulders and she had some Ativan (sedative) left so I gave her two of those. Two tablets had been prescribed for bedtime in the past so I knew it was safe. I wasn't sure how much EMLA was safe so I just split one tube between two shoulders but not evenly enough. The shoulder that got the last half of the tube must have had less because she felt the needle. She did amazingly well though. Micah sat for both needles without trying to escape. Even with being sedated in the past, things went badly, especially for blood tests.  The prize she wanted for getting the needles was a Bon Jovi guitar book.  She ended up napping in the afternoon for the first time since she was a year old because of the higher dose of sedative! 

Usually when we go to my relatives on Christmas Eve, Micah’s anxiety and sensory overload is very high and she stays close to me and eventually ends up climbing on me, hitting, and getting overly silly- not in a nice fun way.  That is the way her anxiety and sensory overload come out.  We have only ever stayed about two hours each year since she was a baby, that is her maximum (and ours too).  There are too many people, lots of noise, smells and so on.  It is very overwhelming.  This year, we stayed our two hours with no issues!  We didn’t interact much with anyone- normal for us and Micah spent the whole time on her iPad.  That is what makes her comfortable, we are fine with it.

School started back up two days ago and for a few days before it began, Micah’s anxiety went back up a bit.  I was worried that she wouldn’t go on Monday. She has been getting frustrated with one of the boys in her class and this is still in the bad part of the school year for her.  She got ready for school and got on the bus no problem.  Her perfect attendance record is still intact!  Exams start very soon and then she will have completed her first semester of high school. 

While on break, Micah searched Pinterest for comebacks to say the boy who is causing her problems.  She came up with lots of good ones that were not mean.  She had the opportunity to use some today.  She just had to use two and the boy left!  It seems to have worked well for her.  She is teaching herself some problem solving skills.

Micah’s therapy session this week is being changed to next week because it will be way too cold to be in the arena at the farm and they wouldn’t be able to focus.  Micah said she should be fine with it.  She has started going to therapy every two weeks instead of every week but this is a big step having to wait three weeks so soon after switching to two weeks.  It is only for this week though so things should be okay.

Not sure how to end this blog post as it’s kind of all over the place.  I am still not sure where my time goes but overall things here seem to be not too bad (even with my bad phase coming on).

Turtle circles