Monthly Archives: July 2014

Mr. White, That Seems Expensive

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Yesterday I heard back from the Pot Doctor. She’s not really a doctor, she’s a Naturopath. So, the Pot Lady. 

She texted me that she was on vacation until August 04 but to give her my email address. I did. 

She emailed me today, and this is what it said (her stuff is bolded, mine italicized): 

Ms Mcnabb (that’s not my name, so things are not starting off all that well)


I will be glad to assist you with this process.

 
I have reserved a personal consult to:
 
MON AUG 6th at 3pm
at
Hippy Dippy Location 
 
Initial Consult fee is $100 cash due at consult
Additional  certification fees range from $150 to $350 depending on condition
 
I will guide you and answer questions at that time.
 
Please bring
1. State ID
2. Recent records 2013 to present supporting an acceptable diagnosis
 
EMAIL BACK TO CONFIRM
 
THANK YOU
Dr Pot Lady

Forgive me, but What The Fuck? According to the NM Department of Health Medical Cannabis Program there is no enrollment fee. NO ENROLLMENT FEE. Clearly since it’s legal but still not legit, I guess we go through some version of that dirt bag on a skateboard that sold pot at lunch in the high school parking lot, huh? 

 
I have to pay her $100 to talk to her? To fill out a form? And then a further $150-350 based on which box is checked and what letters are stapled to it? So, she does nothing…NOTHING, except that if I’m approved she will give me the secret address of the dispensary. 
 
Despite a slight hangover and a general sense of things not getting better and concern for the future and no meaningful pain relief options on the table, I’m thinking that this pot business just may not be for me.
 
Back to square one, because as we know, that’s the only square there is. It’s enough to give even a nice girl like me a strong case of the Fuck Its
 
 
 
 
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Lost: Ambition

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I am, typically, the sort of person who cannot stand to waste time. I don’t watch TV.  I don’t lay about, I don’t do “nothing.” Frankly, I don’t really understand what doing nothing is. If I asked you what you were thinking, and you said “Nothing” I would probably spend entirely too much time trying to figure out how that’s even possible. I have never thought Nothing in my entire life.

If I were to put on my Mr. Spock hat, it might be clear that there are several excellent reasons as to why I am not being as busy and productive as I should be. Like:

1. Xanax dependence/withdrawal. Despite my desire for it to just be over already, it takes TIME. Effing, stupid, unfocused TIME. I spit on you, Xanax, and all your benzodiazapine friends.

2. Pain. Sometimes not only is pain getting me down, I am taken up with questioning the validity of my perceptions. Am I really in pain or am I making it up? Are other people also in this much pain and are they fine and it’s just me that feels like there is a shitty small dog nipping at my ankles while his creepy pink penis drags on the sidewalk? Am I really thinking about dog wieners? Gross. Pain is distracting the same way pink dog wieners (ha ha, it corrected my spelling of wIeners)  are, it’s not something you want to look at, but it’s there anyway, and it hangs around. Change positions, there’s still a pink dog wiener. Walk around, it follows you. Tell it to go away and it humps your leg.

I’ve probably taken that as far as I can go with it. Thanks, dog wiener!

3. Eleventy Billion Effing Appointments. Not, like, cancer level appointments, but appointments. Monday morning is the Shrink at 9:00 am. Tuesday and Thursday mornings are PT, at 8:00 am.

I’m trying to get an appointment with the Medical Pot Doctor but she is slow to return calls (STONED MUCH?). I suppose that expecting a Pot Doctor in New Mexico to be quick would be like expecting not to get your tires slashed for having a pro-choice sticker on your car in Texas (actually I went to Texas proper last year with a pro-choice sticker on my Japanese car and nothing happened, I was disappointed–especially since someone at the UNIVERSITY where I work has twice now scraped my pro-choice sticker off my car).

And it’s not just the appointment itself, it’s the getting up on time part and getting dressed part and making sure you have your credit card or checkbook part and then going to the appointment and waiting for the appointment and then driving home and changing clothes (this is only after PT, I can still wear my Shrink clothes) and wishing there was more coffee then remembering after the fact that burned coffee isn’t worth it. An hour-long appointment….wait. None of my appointments are an hour. The Shrink is usually an hour and fifteen or 20 minutes, and PT is an hour and a half or better. Everything takes four hours (what 90s TV show am I quoting?)

4. The Appointment Aftermath. This is mostly PT. I usually don’t feel, like, great after PT. There is the issue of being seen in public in Not Pants and a tshirt that does not hang below my 44 year old butt. At home, given I’ve lost something like 18 lbs, I am a fan of the not pants and showing butt. But I have a reputation to uphold, and so there’s butt-showing+athletic clothing+same pants each time=dog help me if I see someone I know. Most importantly, though, is the fact that I am generally sore, or stiff, or depressed, or all of that when I get home from PT.

5. The Full Time Job of Things The Shrink or PT Have Given Me To Do. Stop what I’m doing and squeeze my “tummy muscles” for five minutes? Find time to tap on my face and speak aloud affirmations? Every day? EVERY. DAY. Do I do important things when I am avoiding doing those things? No, I engage in the adult version of a kid hiding in the closet to avoid the doctor’s office and play Match 3 games, but I keep up a running mental commentary of, “Wasting your life, huh? Great use of your time. You’ll really regret this when school starts again” to make sure I don’t even enjoy my escapism. A shrink talked to me about that once, btw. I know.

6. Spending the summer home with a 12 year old who has a mustache, a sense of entitlement a mile wide and foul language. I spend my time policing his bedroom for gross dishes/food cartons, shouting at him to turn off the XBox/TV/iPhone/Laptop (I am aware of the irony that I have given him all these things and am, ostensibly, In Charge).  It is hard to concentrate on an online class wherein one is making a hand tailored suit jacket when one must get up every five minutes to shout something at the lazy little bastard watching YouTube fail videos and farting.

****

Lately I find myself doing things like just listening to music. Listening to music is something I typically do while doing something else, but nowadays I sit in a chair and listen to music. That’s it. Sometimes I play the Match 3 Heroin while listening to music, but nothing is being made or created or assembled or finished. I don’t know myself anymore.

We are also regularly watching an (old) television show with the above-mentioned stinky child. The newer Battlestar Galatica, to be exact. This usually follows the Listening To Music portion of my action-packed evening. I should just move to the retirement home now. Meanwhile my tailored jacket project languishes, and I am not the type who is allowed to start a “more fun” project while a “good learning experience” project is still underway, so, well, do you like John Prine? I love his music.

I go through these periods, and they would likely be less painful if I could just allow myself to trust that I will return to busyness soon and don’t need to beat myself with the cat of nine tails the whole time I’m not doing the things I think I should be doing, but I am always afraid that this time, I’ll never go back and be Amazing again. I should go do some Emotional Freedom Technique work with that, but…….Candy Crush.

Sleepless Monday

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Nausea is just about the worst feeling in the world. Despite being really common and there being eleventy billion reasons why it might happen, it’s still poorly understood. I *know* that the nausea that has awakened me between 2:00 and 4:00 am the last two of three nights is coming from my brain, not my stomach. I have gone entirely off the Xanax now, and I can only guess that true to the established pattern, my brain is reacting to that and it’s affecting my stomach the most. Much of our feeling chemicals are located or produced in the stomach, which makes it very sensitive to changes. There are those that argue that the stomach *is* a second brain–hence the feeling of  “being punched in the gut” when something bad happens, etc. Couple that with a nervous system disorder and you have gastrointestinal-emotional chaos.

This is all well and good to know but not particularly helpful at 3:30 am when I am curled in a ball waiting for the clenched gnawing to finally go away. My brain is peculiarly aroused by nausea and frets and worries and comes up with all kind of things to contemplate and pick at and stir up. I’ve considered all of my required tasks today, worried about having a PT appointment at the same time the housekeeper comes on Thursday and what to do with the child then, what needs to be done to get the guest bedroom (which for all but about 1-2 weeks a year is my secondary studio) ready for in-law invasion this weekend. The in-law invasion this weekend. The in-law invasion this weekend. The in-law invasion this weekend. I did my PT exercises. I forecast a life of early morning nausea and sleeplessness. It ended badly. I considered another day of not eating. Swore off red meat. Wondered about valerian and pot and melatonin.

I have to believe that this will ease up in a few more days, preferably prior to the arrival of the in-laws. I’m not that great at having company, particularly *this* company. I tend to “come down” with some sort of gut problem when they are here anyway. Maybe I’m getting it out of the way now? I’ll cross my fingers.

Undoing the Damage, Piece by Piece

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Two milligrams of Valium does not equal .5 of Xanax, so once I started the Valium, I went into withdrawal. I figured this out by myself, surfing some questionable sites for people who are deliberately hooked on Benzos and therefore have vast pharmaceutical knowledge of their drugs of choice. Five mg of Valium are equivalent to .25 of Xanax, so it was too big a drop. After consulting with my PCP, I have shifted to .25 of Xanax and will do that for 1-2 weeks, then .125 for a week, then off. There is agreement that withdrawing from Benzos is harder than withdrawing from opioids/narcotics. Fabulous.

At the same time, I’m cutting the Plaquenil and will be off it in another day or so. Plaquenil, I found out, is a fluoroquinolone antimicrobial. It is in the same antisocial family as Levequin and Cipro, which are antibiotics originally designed to treat Anthrax, but tossed about like candy by several docs in my little town for things like sinus infections and “stop telling me you are still sick” syndrome. Cipro and Levaquin both carry a risk of spontaneous rupture of the Achilles tendon (so be doubly aware if you have EDS and flawed tendons to begin with) and a host of other alarming side effects. Levaquin has caused my heart rhythm to develop something called a Long Q-T, which is bad.

There appears to be little reason to abuse Plaquenil, so information on how to go off it is harder to find. It appears you can just stop taking it. I cut from 400 mg to 350 mg of my dose the night before last and last night cut to 200 mg. I’ll cut to half that tonight and then be done with it. If I feel any struggle, I’ll just add a daily gin and tonic to get the quinine from the tonic water. Just kidding. Mostly.

With both drugs, I can expect an increase or flare in joint pain and possibly nerve pain. I’ve having more little pricks and stabs now and then, and my joints are not at their best by any stretch. Yesterday I was nauseated all day, with zero interest in food. I ate, finally, at dinnertime, a bowl of rice noodles. So, nothingness to chew on. I made iced Detox tea all day and switched to a cup of hot Valerian tea at bedtime. I had wine. I have also managed to sleep both nights straight through. I’m moody and irritable. Yes, in a way different from normal. I had a hard time focusing, and a sense of dread/sadness/emptiness. All withdrawal symptoms. I worked on my quilt because it is my Imperfection Project and doesn’t require a lot of thought but keeps me busy and makes me feel like I’m not just sitting around wasting time.

If I can, I will decide on one glass of wine to phase out. Either the “with dinner,” the “after dinner” or the “bedtime” glass. But right now I am putting my body through a lot, so just keeping out of the “whole bottle” zone is enough. I’m hoping that I can maybe replace that bedtime glass with the Valerian tea and if it works go to the hippie store and get a tincture so I really know how much I’m taking and how effective it is.

If I could have today without nausea, I’d be able to be happy with that.

New Vintage for the Etsy Store

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Yesterday I listed these two gems:

Scallop Dress Flash 1 Scallop Dress 1

This one is silk, from the late 50s, with scalloped skirt and sheer bodice. I added the vintage embellishment to cover two pinholes in the organza, and it really brought the whole thing together. I’m only selling it because I have lost weight and it no longer fits me. It needs a curvy girl with a Jane Russell rack.

 

 

Cheongsam 1 Cheongsam 2

 

This one is a silk or rayon velvet cheongsam (pronounced more like “SheongSaum”) whose age I am not certain of. Bias cut, it will hug curves and is also, sadly, a bit too big for me. The cheongsam is a fashion classic that never goes out of style. In the 50s, they were sometimes called SuzieWong dresses, referencing the exotic Chinese prostitute character played by Nancy Kwan. That term, however, is referencing such a stereotype under the white male gaze that it is not often heard (and shouldn’t be).

I only sell things that I would wear myself, and while parting is such sweet sorrow, someone is going to be The Bomb in either one of them.

Tilting at Windmills

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The Shrink was naturally concerned about the weekend’s drug debacle. She again mentioned medical marijuana. I mentioned my concerns; can’t travel with it, seems shady even though it’s legal in the state.

The next day I went to PT. My therapist said, upon seeing me in the waiting room, “I can only imagine how happy you are to be here.” and “You are actually wearing sneakers.” Yes, I said, just for you.

That afternoon I saw my PCP. He said to stop the Xanax (again), stop the Baclofen, stop Benadryl. Take 2 mg of Valium at night. Nothing else. It’s a muscle relaxant, it’s good for sleep, it’s good for anxiety.

Night One I had trouble falling asleep, woke up a lot, and had really weird, intense, not very restful dreams. The next morning I had a big anxiety attack about continuing on with benzodiazapines when they are not approved for long term use and I’ve been on them too long, and did it make sense to switch one benzo for another?

Then there was another attack carried out by the Pit on the Chihuahua, so there was an afternoon at the vet’s office and very stressful decision-making and money-spending. We will now keep two dogs entirely separate from each other forever.

Night Two I had trouble falling asleep, work up a lot, and had really weird, intense, not very restful dreams.

I went to PT, where she said that maybe I should get a second opinion on the drugs, maybe see the Rheumatologist for that. This sentiment was echoed by my husband and my mother. It seemed like a good solution; get a second opinion and then start pursuing the medical pot angle.

Somewhat hopeful,  I called the Rheumatologist’s office. The woman who answered told me that he was not available until September. “But, I’m an established patient, I said.” Yes, she said, very sorry. Did I want an appointment in September? No, I said, I don’t. That wouldn’t do me any good. I felt jilted.

I went online and sent the Rheumatologist this email:

Dr Michael

If you can’t save some appointments for your established patients, you are not qualified to supervise my care or my meds.

I had two glasses of wine last night before 8:30 pm. Around 8:30-9:00 I flew into some sort of a rage that I don’t clearly remember and can’t determine the cause. As usual, my family acted as if this were normal, if annoying, behavior on my part. I went to bed. I started to fall asleep and woke up. I did that again. I boosted the Valium with two Benadryl.

2:00 am, I woke up. For a moment I thought that I had slept really well, then noticed the time. Then began the gnawing stomach. So I’ve been up since then, finally giving up on lying in bed and getting up to sit uncomfortably in a nice chair with my iPad, playing Match 3 games and querying Dr. Google for life solutions. I’ve asked about Valium side effects; sudden rage can be an adverse effect. I don’t know what will happen when I find myself so sideways on something that’s been prescribed that I cannot do the research, because I think my family might just step over my body and continue on. The dog might lie down with me, at least, if it’s her turn on the floor and the other dog is in his cell.

I’ve decided that I will proceed by stopping the Valium, going back to the Xanax full strength for three days, then cutting it in half for two weeks, then maybe cutting the half in half and then I’ll be off. I will have to supervise my own withdrawal from drugs I never wanted to be on in the first place, and I will have to really work on remembering that modern medicine has little or nothing to offer me. As I’ve said before, stop going to the doctor, weirdo.

Seriously. 

 

 

Listening

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OMG, kids, the past 48 hours.

I expected to have anxiety about starting the New Pharmacological Experiment. I was changing my normal routine, which can trip some anxiety alarms all by itself, in addition to starting not one but two new drugs I was very ambivalent about in the first place and going back to Physical Therapy. I was also stopping the Xanax, which I’ve been taking for about four months, and cutting my alcohol consumption by half.

On the surface, logically, this all sounded good. I might find a solution for my sleep issues, I might have less pain, I might have less puritanical guilt because I was switching to “legit” pharmaceuticals instead of evil, evil wine. I figured there would be an adjustment period, but I also was heavily pressuring myself to give this a solid try, and to be a good patient.

There’s a lot of pressure to be a “good patient” when you have a chronic, complicated set of issues that do not present straightforwardly and require a great deal of trial and error. I feel pressure not to be “crazy” so I try to be careful about how I present my feelings or internal process. I am fortunate in that my PCP is a friend and so there’s a lesser chance of him writing me off as a nut because I am not *just* his patient. There’s pressure to accept solutions as offered and be sincere in trying them. I can say I have, sincerely, tried PT/OT for my hands and for my ankles/knee and it did not work. That’s a check in the “good patient” column, meaning my sacrifice (money and time are particularly desirable to the medical gods) was acceptable. Other drugs, though, I have not always given a fair trial because, simply put, I’m afraid of them.

So there I was, Wednesday night, starting Cymbalta and Ambien. I was starting on a half dose of the Cymbalta and was to take that for a week then go up to the full dose. I had been strictly warned to take no more than 10 m of Ambien, not to mix it with Xanax or booze. The main reason I agreed to the Ambien was that it is supposed to be a sort of “knock-out punch.” They say to make sure you are ready to sleep before you take it, like if you took it then went to the bathroom they might find you wedged between the toilet and the wall, dropped in your tracks.

Ambien, in case you don’t know, is a hypnotic sleep drug. There are instances where people get up and do things they have no memory of doing when taking it. What I experienced Wednesday night was the sense that I was mostly asleep, but frequently very aware of being asleep, of knowing I had taken medication, etc. I put this down to anxiety, which, really, is the easiest thing to blame in my world, Oh, it is my crazy, deal with it. 

My husband and I ran some errands Thursday morning, including dropping off my PT referral, and I told him that I was feeling really hyper sensitive and like the anxiety was so bad I was barely hanging on. By the time we got home, I was feeling so completely freaked out that I went to bed for two hours; something I never do. I left once to go buy fireworks with the man and the child and then they teased me about something and I went back to bed. Everything made me cry, which I did off and on again the rest of the day. Again, we both blamed my anxiety about taking new meds, my anxiety about making big changes in my regimen, it was all Teh Crazy and therefore somehow not “real.” I noticed that I couldn’t stop clenching my teeth, and it was making my jaw and face hurt. Chalked it up to Teh Crazy.

I had, a couple of times, sought out the husband to tell him how I was feeling, and like I was not doing okay. It’s not that he ignored me so much as that he didn’t catch on to the seriousness. We both continued to assume that it was my brand of crazy and that it was something I would just have to get through. I took the Ambien and Cymbalta Thursday night. I took the Ambien at 9:45 pm, and at 11:00 pm I was still up, feeling outside of myself, and unable to settle. I consulted Dr. Google and took two Benadryl. Around 12:30 am I sort of fell asleep, in that I could tell I was lying down like I was asleep, but my brain seemed fully aware of that fact and it was like I watched myself sleep until 5:30 am when I was awake, again, for good.

Friday morning I was suffused with dread. My teeth and jaw ached from clenching them. I was beside myself. I plopped myself down in front of the man and said that I did not feel okay, I did not feel right, I felt like the world was ending and like I was not thinking right. I said that I thought the drugs were really, really bad for me.  I asked if I should call the PCP. He said he didn’t know, did I want to do that? I didn’t know, and I let that push me back to the, “I’m just crazy” benchmark. But then it seemed to all get worse. I started walking around the house, pacing relentlessly, unable to sit still. I felt nauseated. I started having trouble talking without quavering. I texted my PCP, apologetically, and related the following:

I’m sorry to bother you. The ambien doesn’t put me to sleep…what little I got (5 hours last night after 10mg) I feel like I’m fully aware that some of me is sleeping. My brain never shuts off. The anxiety is out of control and feels outside of me. I’m shaky and nauseated and can’t seem to stop clenching my teeth. What should I do? 

He called me, and we went over everything I’d taken in the last 48 hours. He said that I was having a very adverse reaction to the Cymbalta, that I was probably withdrawing from the Xanax and that we had changed too much all at once. He told me to take a Xanax immediately and to keep in touch with him throughout the day and to go to the ER if I got any worse. He said I would likely feel better around 24 hours after I had taken the last dose of Cymbalta.

This morning, finally, I am entirely myself again. None of this, apparently, was Crazy, it was an adverse reaction to meds. I wish I had listened to myself better. I wish my husband had recognized the signs more clearly. I suspect we are better educated at this point and I hope that we both get a lot better at not writing off how I am feeling as something that I am somehow at fault for. If I hadn’t called the PCP, if I had taken the meds again last night, I suspect I’d be in the hospital today, and losing even more time from my life.

The PCP and I will regroup Monday. I am not sure how I will feel about going forward with further changes. Probably anxious.

Dynamic Change: Exhausting

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Up until now, I have structured my medical care concerning EDS this way:

1. No more Physical Therapy. It was unsuccessful, sometimes injurious, expensive and frustrating.

2. No narcotics.

3. I will not give up booze.

4. I will not take any hypnotic sleep aids like Ambien.

5. I cannot change my sleep routine.

6. No pain medication. NSAIDS no longer work, my stomach is a mess because of them, and I’m not willing to be stupid on some drug and lose productivity.

7. I have sought counseling for grief, dealing with a chronic, degenerative illness and I’m sticking with that.

8. I won’t take weird, high level drugs that interact with my nerves or scary shit like that.

 

My back has been getting really, really bad. My hip joined in. My jaw slipped out two-three times the other day. My right thumb is no longer useful for picking things up in certain grips. I went to the doctor. I was feeling like crying all the time, getting up in the morning groggy and ashamed of the mental inventory of how much it took to put me to sleep; a whole bottle of wine? Plus Xanax and Benadryl? Shit, did I take the emergency Ativan, too? What am I doing? Liver, I am sorry, I really am. By nighttime, switching over to the other side of my dual brain; wine is better than something that might make me get up and eat the refrigerator or buy a car or cut my throat, maybe it’s not the Xanax making me feel weirdly anxious in the morning and like crying all the time, maybe it’s just having EDS, maybe it’s not the Xanax making me feel unfocused and not hungry, besides, I’ve got to do something to sleep through this pain because I’m not taking pain meds. 

We met yesterday to go over the results of an MRI of my lower back. I still have a bad back, degeneration at L4 and L5, bulging disc. I brought the Medical Resource Guide put out by EDNF.org. I was particularly undone by this sentence in the guide: “…poor mental health frequently results from enduring constant physiological failures.”  Cheerful, that. My PCP went over the Pain Management Brochure in detail.

Under managing chronic events:

1. Analgesics. We both reject opioids and narcartics for now. He voted muscle relaxant and wrote a script for Baclofen. I said I was afraid I’d be groggy. He asked me how much time I was giving up being stressed about being in pain plus just being in pain and maybe if I felt less pain I could adapt to groggy if I gave it a chance. OKAY GEEZ.

2. Physical Therapy. See above. Knee jerk. He said go for your back. You back is straightforward, there are things to do, it shouldn’t be like the other parts of you as much. I re-start PT on Tuesday, with immense resentment and trepidation, but I’ll try it. My back hurts, man.

3. Psychological Therapy. He looks at me. I say, “I am SO doing that, I am. Every Monday.” He asked if she was prescribing. No, I said, she thinks I should get some medical pot. So tied into 1 and 3, he is starting me on Cymbalta both for depression and because it is FDA approved for chronic pain.

4. Sleep Therapy. Good bye, Xanax. We both know it’s not really good for me. He argues that there is a lot of information that Ambien is safer. Fucking Ambien. I asked if I should read all the literature or just be ignorant. He shrugged. It’s not good to combine with booze, he pointed out, so stop taking the wine to bed with you. Don’t take it with the muscle relaxer, take one or the other.

Naturally, Walgreens managed to lose the script that I took them for the Baclofen, so I was only able to pick up the Cymbalta and the Ambien. I’m not sure how it is that I put an 8.5 x 11″ piece of paper in a vacuum tube and a guy took it out at Walgreens and now it’s lost, but there you go.

It required a dog in bed with me and strict planning to even go through with taking the Ambien, I am so afraid of it. I slept, but weirdly. I feel like I was fighting back all night, but I am also telling myself I just made a major changed by dropping out 2/3 of my alcohol consumption and the Xanax, which is how it’s been, well, for years with the booze and almost 6 months with the Xanax. So, I have to give it a chance. Two weeks. That’s what I’m going to try. It feels a little like going down the rabbit hole but I guess I can always climb back up if this doesn’t work. At this point, though, I feel like things are not working and I have to try something different. Sucking it up is too hard and costing me too much mentally and physically.

But I am completely freaked out about it. Can’t seem to overcome my brain’s position on that.