Category Archives: Fibromyalgia

Insidious Black Box

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I apologize for the length of this post. Please consider reading the entire post. It’s very important. Your life could depend upon it. (Robin)

Emotionmasks insane faces

I take two medications that I considered to have a Black Box warning. They both depress breathing. Together they can stop my breathing altogether… There are other dangers.

I have chronic pain with Bipolar Disorder and Generalized Anxiety. I am prescribed both Oxycodone and Clonazepam by two different providers. They both know that I take both medications.

I see a pain management specialist for my pain. I have for some time now. To be treated there, I have had to sign a contract that governs my behavior with regards to taking pain medications, I have to take a pee test every time I go in and they count my pills every time as well.

My med provider handles my Clonazepam prescription for anxiety. I suffer from extreme anxiety. Sometimes I feel like my brain is going to explode. Recently, this woman, who is the 4th or 5th provider I’ve had since I started going to this clinic, told me that I’m more likely to kill myself because of anxiety rather than depression. I was always told that a depressed person was more likely to commit suicide when they started to feel better. When they started feeling better, they finally would have the energy to follow through with their suicidal inclinations. Apparently, there is more to it than that.

My counselor and every med provider I’ve had is intimately aware of my massive anxiety and my inability to get it under control. We’ve tried all the counseling type of solutions including Cognitive Behavioral Therapy (talk therapy), mindfulness and other techniques. I’ve not had success with any of them.

My med provider is content for me to only take Lamotrigine, which is primarily to treat my Bipolar Disorder depression symptoms, and not to take anything other than Clonazepam for anxiety. From talking to her, it appears that this is primarily to treat the depressive symptoms that I experience. I have not been able to get any of the med providers who have treated me to give me anything for anxiety other than Clonazepam.

She, my med provider, told me at our second meeting, that people with anxiety are more likely to commit suicide than people with depression. Since I suffer primarily from anxiety, you would think someone would have warned me of this. I understand now why I feel so self-destructive while I’m exploding with anxiety.

She has told me that her goal is to get me off the Clonazepam completely. Now that I’m taking my runaway anxiety and the real chance I will kill myself because of it more seriously, I’m also taking the mix of these two medications seriously. I always have, but my frantic response to my anxiety has created a situation where I’m so afraid of what might happen if I stop taking the drug for anxiety.

I’ve always felt like I’m most insane when my anxiety is at its peak.

I understand that long-term opioid use for chronic pain is not the most effective way to treat it. I’ve wanted to find a different solution for a long time. My pain management provider doesn’t offer other alternatives than pain medications.

I normally don’t want to die. I’ve always had urges that are normally short in duration towards it, but I haven’t had times when I sit there with my bottle of Oxycodone ready to take it all. But, I could.

I’ve never told any of my mental health caregivers that I have suicidal thoughts. I know that my community does not have good facilities to treat acute mental health emergencies. I don’t want to become one of those people who is shuffled into a hospital emergency room with a guard sitting outside my little room. That’s what they do. I have first-hand knowledge of this.

So what’s the answer? Do I chance dying in my sleep? Or do I chance ending my life while I’m awake? Both are real dangers.

I’ve decided to deal with my feelings of self-destruction now. With the danger of the two medications and my new understanding the relationship between anxiety and suicide, I have promised my family that I will talk to my counselor on Wednesday when I see him. I will admit that I think about suicide. That’s a huge step for me.

I’m afraid. Admitting how I’ve been feeling for years is like admitting that I can’t control the one area of dealing with my mental health that I always felt I could say I didn’t have a problem with. I’ll finally be admitting I have no control over my depression or my anxiety in relationship to staying alive.

As I say, I don’t want to die. When my anxiety runs away I cannot always control myself. I can become violent and destructive. I break down and cannot function. I become paralyzed yet also hysterical.

Yesterday I talked to my mother and all three of my kids and admitted the truth to them. My youngest who is a psych major at the same university that I attend (so is her partner) said she had been wondering if that was a problem for me. They all agree that they would rather I call them than I call a suicide line. I’ll talk to my therapist about that.

I have tried to learn to practice mindfulness several times in the past. I never fully committed to it. Mindfulness was just part of the learning experience in one of my classes I just finished. It’s time for me to review the materials I have about it, I have lots. I need to try to learn how to harness it’s potential in earnest this time. My life depends upon it.

I have a particular fear: I’m terrified of my anxiety. I know what it does to me. I sometimes feel the insidious devil of insanity creeping through my mind trying to take over, and it literally shreds my mind.

If you have any Black Box warnings for medication yourself, please take it seriously. Now that I am self-aware of my true situation I’m ready to find a way to deal with my symptoms.

 

My main medications:

Chronic Pain – Oxycodone / Nucynta

Anxiety / PTSD – Clonazepam / Benzodiazepines

Bipolar Disorder / Depression – Lamotrigine

 

Oxycodone – Warnings

“To make sure this medicine is safe for you, tell your doctor if you have:

  • a history of drug abuse, alcohol addiction, or mental illness
  • if you use a sedative like Valium (diazepam, alprazolam, lorazepam, Ativan, Klonopin, Restoril, Tranxene, Versed, Xanax, and others)”

https://www.drugs.com/oxycodone.html

Clonazepam – Warnings

Risks from Concomitant Use with Opioids
Use of benzodiazepines, including Clonazepam, and opioids may result in profound sedation, respiratory depression, coma, and death. Because of these risks, reserve concomitant prescribing of benzodiazepines and opioids for use in patients for whom alternative treatment options are inadequate.

Observational studies have demonstrated that concomitant use of opioid analgesics and benzodiazepines increases the risk of drug-related mortality compared to use of opioids alone. If a decision is made to prescribe Clonazepam concomitantly with opioids, prescribe the lowest effective dosages and minimum durations of concomitant use, and follow patients closely for signs and symptoms of respiratory depression and sedation.
(The above Warning is taken from: https://www.drugs.com/pro/clonazepam.html)
Concomitant: (synonyms: attendant, accompanying, associated, related, connected)

Lamotrigine – Warnings

To make sure lamotrigine is safe for you, tell your doctor if you have:

  • A history of depression or suicidal thoughts or actions
  • Some people have thoughts about suicide while taking this medicine. Your doctor will need to check your progress at regular visits. Your family or other caregivers should also be alert to changes in your mood or symptoms.

https://www.drugs.com/mtm/lamotrigine.html

Nucynta – Side Effects for Health Care Professionals

Psychiatric – Common (1% to 10%): Insomnia, confusion, abnormal dreams, anxiety, depression, irritability, nervousness, drug withdrawal syndrome, restlessness, sleep disorder, hallucination, depressed mood.
https://www.drugs.com/sfx/nucynta-side-effects.html

 

Benzodiazepines

Benzodiazepines may be used in the treatment of anxiety, panic disorder, seizures, or sleep disorders.
https://www.drugs.com/drug-class/benzodiazepines.html

 

Bipolar – Anxiety Rising

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(Sept. 04) I’ve been sitting here trying to think of how to begin writing this and I’ve been getting nowhere. School is coming and I’m stressed out about that.

I have tremendous back pain and I go to a pain management doctor for my pain medication. The doctor that I’ve been seeing for like two years has stopped working in pain management and has opened a family practice. She was great. She really worked with me and worked to manage my pain knowing that I have Bipolar Disorder, PTSD, GAD, ADHD and so on. She was the one who prescribed my chill pill (medication anxiety) that I started taking during the school year last year when I had an anxiety meltdown.

The new pain management doctor started out by accusing me of selling my oxycodone and refused to refill my chill pill. I had a prescription of Oxycodone at the pharmacy to pick up which she didn’t take into account. I didn’t do anything wrong. I don’t like her. I don’t trust her with my health. My next visit to her she accused me of breaking my pain management contract by not bringing in the second pain medication I’m on. I was never told to bring the bottle in with me. Oxycodone yes, the other stuff, no.

My back has been bothering me.

My facial tick is back. It comes with anxiety like snow falls in the mountains… when the cold and precipitation is sufficient, the snow comes. Actually the vicious tick came with my beginning to take Gabapentin gain instead of Lyrica (Gabapentin can also be used for anxiety as well as for FM, which is why I tried taking it again).

FAST FORWARD TO TODAY Sept 28

I’ve been taking my chill pill daily. I survived my first day of classes because of the pill. I usually wake up in a cold sweat whenever anything remotely stressful is going to happen during the day. Like, for instance, going back to school.

Anxiety is such a huge part of my being right now that although I’ve lived in my new house for about two months I haven’t been to the grocery store by myself even once. I needed to buy some poetry books from the bookstore about 20 minutes from my house and instead of just going and getting them I called my eldest daughter and bribed her (I’d buy her a book if she’d come with me) to come with me. I just find it stressful to do things alone. I do not have a rational reason. I’ve done all the thinking and reasoning about my anxiety that my counselor and I have come up with and the anxiety does nothing but get worse.

I stopped taking the Gabapentin and the facial tick immediately started going away. When I’m stressed it comes back. I hope it isn’t permanent.

I see my med. Provider (the gal who manages my mental health medications) Sara in the morning. I’m asking her for something to treat the sever anxiety on a long term basis. The chill pill is great but it’s for a crisis and not meant for long-term consumption.

I get so wigged out about things that earlier tonight I already mapped out in my head the route that I would take to get to see Sara and then called my daughter to make sure that I could get to the grocery store from where I was coming from. I’m planning on going to get some milk on my way home in the morning. I need to do it on my own. I think if I have the chill pill I can.

It’s amazing. I wish I could take it all the time. I’ve been having to use it to go to sleep at night. When I don’t take it I’m awake until after 2 or 3 in the morning. Then I wake up sweating. I’ve even resorted to listening to relaxing meditative music/waves on YouTube all night. I found a channel on my TV provider to listen to that works as well called Soundscapes.

The struggle I’m having with anxiety is so severe that I’ve not been willing to blog and that makes me sad. My counselor has put forth the idea that perhaps my mania is manifesting as anxiety and that It’s really part of my Bipolar Disorder. I sort of hope that’s the case. If it is, I’m confident we can deal with it.

Why haven’t I been in to see my med. Provider sooner? She’s been booked. It’s been over a month since I last saw her. I’ve talked to her on the phone and my counselor talked to her on my behalf too.

Hopefully tomorrow I can communicate clearly how absolutely painful this anxiety is. My counselor is supposed to go to that meeting with me. I hope she can actually make it. It would give Sara a clearer picture of what’s going on with me.

Now, I’m going to listen to Rachel Platten’s “Fight Song” then I’m going to go to bed. I might read for a few minutes. Maybe one or two. Seriously, that’s as long as I’ll read.

I have high expectations for my visit with Sara and Rebecca (my counselor) in the morning. We got this. I have to believe, we got this.

Bipolar – What is it?

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I thought it might be a good time to share with you what I think is one of the best explanations of what Bipolar Disorder is that I’ve come across in all the years I’ve known I have (am?) it. Read on:

Bipolar disorder, also known as manic-depressive illness, is a brain disorder that causes unusual shifts in mood, energy, activity levels, and the ability to carry out daily tasks. Symptoms of bipolar disorder can be severe. They are different from the normal ups and downs that everyone goes through from time to time. Bipolar disorder symptoms can result in damaged relationships, poor job or school performance, and even suicide. But bipolar disorder can be treated, and people with this illness can lead full and productive lives.
(NIMH Bipolar)

I admit that when I was a single parent of three young children life was less than fun. I was very sick. I spent what time I could be “normal” growing my kids up so they would be productive and good members of our society. More than that, I wanted their lives have the potential to make a difference somehow.

Despite my Bipolar (Type 1) I kept at it making memories when I couldn’t buy the kids stuff their friends and exploring their world around them. They had me at home and my “mostly” full attention all the time. Most kids don’t get that do they? Today, years later, most of my kid’s friends come from broken, dysfunctional and unhealthy families. We try to make our home a haven for these kids, welcoming them in if they behave like good people. We have standards we maintain here. No drugs, no dating my kids, and we encourage the kids not to be sexually active. Okay, the kids themselves try to encourage that. Why? Because it messes them up more. If they have a bad family life you can bet that heavy dating isn’t going to be the answer. The answer comes from within. Just like it does for you and I.

I have Bipolar Disorder in Aces and Spades… Full on and all the time. Yet, today I’m under the supervision of competent med provider and counselor (mostly lol) and you know what I suffered the affects from today? My ADHD. Yep. Like wow. My Bipolar is in order for the time being (and I take all my meds). Now to deal with the ADHD.

I cleaned house today. Until my back pain (I have chronic back pain and FM) and my right thumb (arthritis) slowed me down and demanded my painkiller and muscle relaxer.

It’s a fine line I walk with my meds. (Each person who prescribes for me knows all the other drugs I’m on. Still I check for drug interactions. That would suck.) Managing the pain in my brain and the pain in my body is difficult to do.

Here’s what I’ve learned. Drugs meant for one thing do NOT help for the other thing. Painkillers do not help Bipolar Disorder. This is what I remind myself of so I keep on the narrow track:

Bipolar disorder, also known as manic-depressive illness, is a brain disorder that causes unusual shifts in mood, energy, activity levels, and the ability to carry out daily tasks. Symptoms of bipolar disorder can be severe. They are different from the normal ups and downs that everyone goes through from time to time. Bipolar disorder symptoms can result in damaged relationships, poor job or school performance, and even suicide. But bipolar disorder can be treated, and people with this illness can lead full and productive lives.
(NIMH Bipolar)

You would do well to remember this too my friend, no matter what else happens or what else you suffer from, this Bipolar is a different beast and you’d best not forget it nor neglect it lest it eat your life to bits.

I invite you to visit my re-blog of this blog on Facebook under Redux 2.0. Share this blog with your friends if you think it would help them or help them understand you.

Here you will always have the truth as I find it and as I discover it within myself. I will always try my best to be honest with you.

Write me, I answer all emails. I’m pleased to receive them.

Be well. Remember there is hope for you as there is hope for me…. take one hour at a time.

Your friend, Robin

Bipolar – Handling an Insane Schedule and Still Having Fun

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I tend to forget a very important fact when I’m busy and especially when I’m going to be driving… I have chronic pain in my back and I tend to forget to take my Oxycodone. Or, if I’m going to be driving, I don’t take it. Late this afternoon I remembered I was in pain (I also take Lyrica for FM and have OA so go figure with all the pain right?), I remembered and I took my pain killer. Quickly I was able to do house work and things I had stopped doing again, like moving around like I’m not a super old and very cranky woman.

I’m not high. Just experiencing less pain. It’s makes such a difference with the Lyrica and Oxy and the anti-inflammatory they have me on for my OA.

Back to the really important stuff: The Magical How to Be Too Busy and Still Have Fun.

Since my last post things have gotten more complicated and because I neglected to take some of my meds as prescribed I started being angry for no good reason and wanting to lash out. Took my meds…. I’m ok now. I can’t stress enough that we have to take our meds. You don’t think you need them? Especially during this next 30 days or so then you are nuts and a dope. Take your meds.

Starting last
Saturday  – Afternoon at my parents just to visit (my dad has stage four cancer and they “say” he has 6 – 12 months left) My brother and I are trying to spend time with them as much as possible.

Sunday (today) – Early family dinner at my parents with Tony and Mat too (my brother and his partner)

Monday – Take Kyle to the bus at 7:50 (the transit bus line stops exactly 8 minutes before our house)
– Take Syd to friend’s house so friend can get Syd to work on time (Kyle and I will be heading to Seattle)
– Pick up kyle at UWT at 11:00
– Arrive at UW medical center to get my new dentures (only Kyle and Syd know I’m getting them now)
– Drive through Seattle/Tacoma traffic through rush hour home. Usually takes 2 to 2.5 hours. Crazy drive. Seatac is almost that far.
– Pick up Sydney at end of bus route at 6:00 or find her a ride home

Tuesday – Sydney Braces for teeth…. orthodontist appt. at 7:50 a.m.
– 3:00 Sydney works till 5
– Kyle school then works till 5
– My brother’s birthday – at Bob’s Burgers (Where everyone will see my new teeth and that I cannot work them very well yet. So funny!)

Wednesday – Pick up “Carol”, my friend for lunch at Seatac during her layover. Actually, I’m picking up Jessica (my other daughter) from the airport and sneaking her home to surprise her sibs. 1:15 p.m.
– 3:00 Sydney works till 5

Thursday – Thanksgiving where I will again try to eat and talk with my new face. I anticipate talking funny for a bit and eating… carefully. lol
– Dinner at my brother and Mat’s at 4:30. It will be a banquet for kings and queens. They always throw amazing parties. The food is amazing. But then, they have lots of money.

Sat – Sun Syd is supposed to work on a project with a girl from school…. only she doesn’t know her sister will be leaving Monday. OMG!

I think those are the highlights. All the while I will be thinking of my dad and how he’s doing. And that the stress of all these secrets is making my brain burn like a torch lighting the way to a wondrous gift: family… and taking my meds as prescribed every day. Even the stupid ones that want to be taken 3 times a day. Uh. Don’t you hate those? Makes me bonkers.

My friend Carol and Jessica are the only ones that know what’s going on. No, Jessica doesn’t know I’m coming to the airport with my face in (dentures, it really changes your face).

Now more how to survive Thanksgiving tips that I use myself:
Play games – I don’t care if they’re card games with others or computer games by yourself. Play something!
Breath – from deep down in the belly when you feel the stress monster coming for you.
Ask for a hug – you don’t even need to say why. Just ask for one… or give one, maybe more than one!
Eat properly, and drink lots of water. No booze. NO BOOZE. Seriously. Don’t drink it.
Get enough sleep.
Smile. Smile for others if you can’t for yourself. Don’t bring your world down to your mood if you’re cranky.
Meditate, pray, be still… recharge yourself. Go to your happy place.
Oh, and do not over eat.

And then the next day will come and what you did the day before will still be with you so make wise choices.

Lastly, if you have a service dog avail them of their services. It’s what you have them for! Mine is sleeping soundly in her place at the foot and her side of my bed. Even with her cone on she knows when I need her. (She had her girl bits removed and wants to lick it too much) So that damn cone  is another stressor for us all. It makes it very difficult to train her with it on.

I’ve taken on a lot this week. I’ve decided I can make it work if I take my time and keep things separated. I believe I can do this. I even have a separate schedule in my desk in my room for Jessica coming. If I mess that up the game will be blown. Normally, I wouldn’t do this much, but Jess and I decided she should come home for a quick visit now and a longer one in December in case something happens with my dad; her grandpa.

She just became a Senior Airman in the USAF. I’m so proud of her! Her new stripes and all that are so cool. I can’t wait to see the picture of her in her blues besides her selfie. lol

And now the test. Can I follow my own plans to succeed? Have I set myself up for a huge fall? I don’t think so. I’m having to focus on others;  always a good thing. Focus. That’s important. I’ve got to stay focused and balanced and ask for help when I need it. Sometimes that’s hard to do.

Let me know how you fair this week my friend. I’ll tell you how I do when I’m through next Monday.

May you escape the nibble of a turkey on the end of your nose. May you eat said turkey instead. May you stuff your bird with stuffing . And may you spend time with loved ones, even if it’s only by phone or Hangout or… thinking of them. A little bit of love goes a long way. May you succeed in all your goals

Ciao,

Robin

Bipolar – Insurance

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I’ve been on the phone last Thursday, Friday and today with people of perhaps challenged intelligence trying to un-mess my daughter’s health insurance. No luck so far. Maybe tomorrow.

The thing that kills me about being Bipolar and insurance is not having or not having it… I mean insurance. The thing that kills me is that being both Bipolar 1, ADHD and being able to become depressed in the barest moment is that despite finally succeeding in getting my prescription for Lyrica cleared for my FM (Fibromyalgia) I’m depressed. (I’m a mixed state Bipolar so I’m very good at this little trick of the brain.)

I’m frustrated and angry and depressed and frustrated and angry and depressed…. I haven’t experienced more than a few minutes of gladness for the Lyrica victory. I’ll have to focus on this more and try to let the victory overtake me by it’s great possibilities for relief for me.

If you have BP or other such thing, you may find that you have difficulty with your health in other areas. I was reading an insurance fact sheet today that said that disabled people (of which I am a subset of) tend to neglect their health… Google it darling. ;0)

I have my father’s teeth. Neither of us have any. I’ve not been able to wear the standard dentures that the State provides to those on disability insurance. I’m hopeful (I hope) that my insurance will cover more costly ones including posts that will done at the University of Washington. I think it’s the School of Oral Surgery. I have complicating issues so I think, rather, I trust and hope, that the new face will be covered.

I have to be honest, the fear that insurance won’t cover a new face for me terrifies me. I’m 51 years old and I have no teeth. I cannot wear regular dentures.

Add my lack of ability of what I consider the ability to smile a truly joyful smile to my Alphabet soup and you have a mixture that’s hard to swallow. So to speak. Well, I did choke on a blueberry muffin this morning at breakfast.

And now… I simply cannot reread this. I hope that it is at least a little understandable. I’m very frustrated and irritable and need to explore my current method, well, my current exploration of a way, to reign myself in so I can slow down, if not be peaceful before bed. I’m speaking of something called Mindfulness.

Mindfulness… Do you know it? So far my friend it seems a good thing to hedge my bets by. (Or is that “with”?)

Good night.

Please write. I reply to all letters.

Bipolar – The blow. . .

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There isn’t any good way for me to tell this to you. I can’t think of a single way to soften the blow. . .

The blow. That’s funny. We’ve counted 3 times. Today I found another one. There are 21 medical marijuana shops traveling from my house, down a major arterial into the city,  and ending downtown.

Twenty-one gigantic green pluses (+) all along the road. These mark the blessed spots where the water grows greener. The pot shops.

There are more pot shops in this 5 mile drive than there are coffee shops. I live near Seattle. Go figure.

My Primary Care Provider (read… doctor) has tried to convince me to use the green lung goo for several years. I suppose he feels that Bp 1, OA, FM, anxiety, and ADHD are a bit much to handle. Hmm… and chronic pain from bulging disks and arthritis (specifically in my lower back) and that it might relieve my pain (read “issues”, loving referred to as my “alphabet soup”).

Nah, I don’t think so. I visited an old work friend who has been on the stuff for years (beginning before it was legal here) and I tell you after I visited her and her husband at their multi-generational home… I think not.

That’s a NO.

I’m not going to go into my specific reasons about this issue because I’m only writing to tell you this one immutable fact:

THERE ARE 21 POT shops BETWEEN my HOUSE and DOWNTOWN.

5 miles.

21 pot shops.

Forget my alphabet soup my friend.

That’s a bit too much.

21.

 

{If you disparage of my use of the term “pot shop”, you are thinking this thing through way too hard.}

Bipolar – PENS & Oxycodone

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I love pens. I really, really want to get one of those very expensive jobbies. I saw some in a gift boutique downtown Wednesday afternoon. They were 2013 models and at a bargain 50% off the normal $450 and $300. Oiy! Maybe not today. I’d love to get one for myself and one for my eldest daughter. We both love to write.

Writing can be a passionate thing. It is with me. Always with me I’m investing something of myself when I write whether it’s something blatantly obviously personal or if it’s something going on in my head that I want to talk about.

Right now I want to say something that I think is very important so sit up and read carefully. I’m putting this in terms of applying to myself so I know this from personal experience.

I have chronic pain. I have something wrong with my L4 and L5 disks, degenerative disks all the length of my spine, osteoarthritis, and fibromyalgia. I have a twice replaced right knee (replaced twice in two years, the first time it didn’t work) known as a TKR. I am 51 years old and I must say I do not appreciate needing to go to a pain management specialist and taking narcotics… every day.

I’ve been having what i can only label as nightmares now that I’m taking closer to the prescribed amount each day. (I also take Tramadol but that gives me migraines after a few days use). I don’t normally have nightmares. I was having trouble discerning reality fro dream when I would wake up in the morning.

Tonight I woke after another “nightmare” and remember something quite startling. When I was “incarcerated” in a facility to recover for my TKR the second time because my parents were moving and my kids wouldn’t be around to care for me giving me meds and such. It was a horrible experience. Besides generally feeling like I was incarcerated I was on Oxycodone at my maximum dosage every single time I could take it. The staff were only too happy to let me have it.

Unfortunately I had several nights in which I had terrifying and convincing hallucinations. It has taken me a long time to admit they didn’t really happen. Add to that, that I don’t remember my eldest daughter calling me daily from the MacDill Air Force base where she works as an air traffic controler. We live across the country from each other and that eats at my heart. We’ve always been close and the distance is difficult. But I don’t remember her calls and I know that bothers her. She took care of me during my first recovery and had to go through my even having two blood clots below my surgical knee. That was also a nightmare.

Last night and tonight I’ve been about at the level of Oxycodone that I was at in the rehabilitation center (read: nursing home) and I’ve started having hallucinations, not nightmares.

I suspect my use of pain medications is on the way down. We’ve tried a number of things and nothing seems to help.

I have an idea that I am sure will help. Ever hear of neuroplasticity? I’m sure you’ve heard of Luminosity, that’ s neuroplasticity. For me, this will mean using mindfulness to “remap” my brain and in doing so enable my actual brain structure to interpret pain differently. It won’t seem painful to me.  I guess I could put it like that without going into detail right now. I will soon though.

Neuroplasticity is becoming my key to dealing with my much of my troubles. Think of it, how awesome it will be to control my chronic pain, Bipolar, FM and OA… at least to a degree. Many advanced meditation practitioners are known to change their brains in a manner like the mindfulness I’ve mentioned.

Mindfulness. Neuroplasticity. How great to have the possibility of using these disciplines to help myself!

I’m not likely to be drug free… but I’ll get as far as I can.

I’ll talk about Mindfulness and Neuroplasticity in depth soon. They are very important disciplines that science backs up. I mean they are both proven scientifically to work in the areas I need. They impact many other things too.  After all, they are not confined to “topics” the brain considers. They do however, change the brain in ways we cannot comprehend considering the vast expanse, the last frontier as they say. At night I’ve taken to listening to Pandora. I searched and found a Mindfulness station to listen through the night. It’s playing right now. I finally decided to subscribe. Know why? The commercials were scaring me as I slept. Ew.

Watch your consumption of drugs like Oxycodone. You could have side affects you would think would anticipate.

Be cautious. Be ever vigilant.

Catch you later.I’m trying to stay awake for a while. Those hallucinations were getting very weird. Scary.

Robin

I’m in such pain…. I’m a BP1, ADHD, PTSD, FM, OA, MOM

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Seriously though… I’m in an extraordinarly dismal pain deep in my bones I think. I’m not certain. It starts somewhere around my swollen and annoying disks down around the L-something-or-other.

Restless legs? Perhaps. Runs in the women on my mom’s side of the family.

Anxiety encouraging psychosomatic (maybe) spinal pain to radiate through Restless Legs and deep to the ass of the leg with the double times new knee.

Translation… My equal isn’t ibriumating. Get it? Equilibrium. Equal. Equal-ibrium.  New knee as in “not using it much for years and am lopsided and out of synch.)

What?

Seriously though… From my lower back down past my toes especially in my right leg and alien beastie is trying to pull the bones out of my flesh. Meat. Oh my.

Seriously though… Hurts like a “$(%*& ”   of  a    ” )(*&#_ ”   If you know what I mean.

Sitting on my bum on the floor is a feat of unsurpassed hilarity. Translation: I’m either laughing madly – or – crying with great abandon. Take your pick.

Tonight the pain started about 1:15 in the afternoon PST.   Not EST.   PST.

I took my Oxycodone and heating pad and lie down (lay down… well I wasn’t “sitting” down) on my bed while my puppy (Australian Shepherd/Heeler named Bailey, a little girl) snoozed at my feet. Literally. She slept temporarily where my feet could go on my queen sized bed. Then she slept where they also could have been. And then again. Add. Spin. Rinse. Repeat.

Where was I? Right. Bloody bleeding sickly . . . agony. Pain. Unrelenting, mind blowing, consuming… pain.

I don’t watch American Idol. Did once, when it all first began. Still have a fondness for Kelly Clarkson. The queen upon the Idol throne. I sat tonight not watching the 13th season with my son (Kyle, 19. He’s a boy.). I think I must have been doing it louder than I noticed because suddenly he sideswiped my attention from my ass to, well, to my whining. I was whimpering and whining.

I never allow myself that luxury while my kids are about. At least, not before this. Today, I’m in such pain… And it started well before bedtime.

Oh damn!  I just want to sleep.

I think, I think I’ll go soak my ass. Okay, I’ll soak everything that will fit in the tub too. Maybe some soothing heat not floating around my body will help some. Oh great bird of the universe I hope so. Damn I do hope so.

My car is in the shop. Again.

My phone is stupid and dead.

My knee is still new.

My weather is nice. Just right today.

My belly is too big.

My kids are amazing. And my puppy too.

I can see my feet again.  When I move my boobs out of the way. I’m short you know.

I’m in so much pain.

Good night.

Tomorrow is going to come whether I’ve slept or not. As it always does and always should do. I would do well to remember this.

Come on pain, time to have a bath. Pain, would you consider going down the drain? Please. No? Screw you. I’m having that bath anyway.

Again. Good night.

What’s Wrong with Me?

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All right then…. early on in my adventure in this thing called “me”… things were really rough. Actually, things have always been rough for me.

STOP!

Wow, that was horrible. I cannot relive all the horror that I’ve been through just to tell you this thing I’ve discovered.

When my kids were young and I was coming apart at the seams I struggled against myself to find peace. Some days the darkness wanted me too much it seemed. God was nothing and I was all alone. Alone in my head with myself.

The thing about me is I’m never ready to stop. Even when that’s what I’m screaming that it’s what I truly wish for.

I came across an idea, a lot of ideas. Things written and spoken that gave me the beginning of control. Control of myself… stopping.

Think about this. . . I am the only one in my head, controlling what I think and who I am. Yes, I may be admitting I’m bonkers and I’ve chosen to be bonkers… but I’m not. I’m not!

Youch! Bipolar is . . . my brain dancing to a private tune. When I’m off my meds or on something that just isn’t working for me my blessed brain runs amok. Everyday I enter into negotiations with myself to see if I’m going to cooperate. Cooperate with myself.

I am the only one who can control what I think.

Just me.

Yes there have been and will times when I don’t believe that. But it is true. My strength comes from within myself. I had to be on medication after medication and so much pain… when the drugs started helping me begin to hold on to myself, I was finally able to find an idea that would see me through this day.

I am the only one who can control what I think.

Okay, I need a little help with that from drugs, but what’s a girl to do when her brain runs bizarre?

I am the only one who can control what I think. Just me.

I won’t say I’ve been saved, because that’s not what this is about. It is about mental health, about my brain dancing Bipolar, ADHD, PTSD and always some new alphabet soup. I’ve been trying on OA and FM. We’re not on great terms just yet. And then I saw the Neurologist last week and he told me basically I’m mental. This facial tick I’ve developed over the last six months or so is my brain trying to get my attention.

Let me get this straight. My often out of control brain wants my attention so it, my brain, thought it would have a party on my face? Seriously? Sucks. He suggested I see my mental health professional. Wow. Show stopper.

My brain, with a “mental” disorder… is mental. Super sucks.

I am the only one who can control what I think. Just me.

Maybe that’s what my mind has been trying to tell me. That I need to listen to myself, that I need to learn and teach myself. I need to find whatever helps me handle me (good and healthy things) and pursue them with great vigor.

I must always remember that I am the only one who can control what I think. Just me — with a little help from my meds.

Confused yet? You are? Good. Me too.

You Can’t Have My Leg!

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It would seem that I’m not done with me yet. I’ve paralyzed myself for a long time, not willing to write, telling myself that I don’t know where to start. So many odd and terrible things have happened to me… are happening each day… that I rationed that I was waiting for a lull in the storms that are me so I could present you with a neat package all polished and not like I am now. If I were a color book I would never have drawing inside my lines.

Here I am. This is what I’m thinking tonight:

My right leg is going to fall off.

Seriously. That’s it. Oh sure, with my alphabet soup (Bipolar 1, ADHD, PTSD, FM, OA… for now) crowding me for more undeserved attention. They annoy me. Like a flock, a gaggle of Canadian Geese launching themselves at me unreserved and underrated. They scare me. They are impossible to reason with. No matter where you are if they decide you need to be chased, you’ll be chased as long as they can chase you. No lie. Your heart will pound excitedly when the medium sized birds take after you on the ground like a Disney movie gone terribly wrong.

My leg. I had my right knee totally replaced in January two years ago. By the following year it was clear that the surgery had failed. The prosthetic that was implanted in my leg bone failed to graft with the bone it was supposed to graft to which would, had it worked, have given me a working and reliable new knee.

Wrong.

August 2013 a surgeon specializing in replacing messed up knee replacements replaced my replaced and prosthetic knee. Both times I suffered terribly (differently each time). I suspect that no surgeon would appreciate me talking with any of their patients and telling them how the whole sordid mess went. (To clarify – Sordid meaning: involving ignoble actions and motives; arousing moral distaste and contempt, sleazy, dirty, seedy, seamy, unsavory, tawdry,cheap, debased, degenerate, dishonorable, disreputable, discreditable, contemptible, ignominious, shameful, and abhorrent. The exact opposite of: respectable.)

The up-to-the-minute report is this: Friday I showed my MD that my entire surgical leg (right) was bigger than the left. No sense in studying it to see if I was imagining it. It obviously belongs on some other person’s body. This is a problem. I don’t even know what the problem is and already I realize it’s a problem. I think my name must translate in some language to “problem”. I’m certain of it.

I exposed the bare and big leg to my doc on Friday last. He sent me back to my surgeon, but not till after we get another and new authorization to see the fella. Seriously. Same leg. Obvious connection. Gotta have that new authorization. I called his office and explained the situation. The woman at his office agreed to request one for me from my MD. (Yes, I’m saying “MD” and not PP, PC or any other ridiculous set of the alphabet… again with the alphabet. He’s my doctor, my medical doctor. That’s Medical Doctor. MD.

What I didn’t realize was that my MD had that very day put in an order for me to have a vascular study done on the affected leg. They would take me as soon as today (Tuesday). Getting an appointment that fast freaked me out. (Just a little FYI.) Since my doc referred me to my surgeon I assumed he was done with me regarding this particular medical happenstance (coincidence).

That last sentence looks strange to me, but my brain refuses to use any other word.

Anyway, the surgeon didn’t order the imaging before he even saw me. I wondered if maybe he had so he would know ahead of time what might be going on. But.. no. My MD ordered it. When he starts a process that really should probably be ordered to the specialist I was being sent to I hit the “worry” button and all hell breaks loose. Again.

Today the resounding thought that pestered me like the rain does every time it soaks me when I take the puppy potty was: “They are going to take my leg off.”

Seriously. “They are going to take my leg off.” That’s what my brain has been saying all damn day.

Just to show you how badly I freak myself out living inside my head with my alphabet soup, my MD has ordered me to have a service/companion dog. This, is our puppy, my service/companion dog in training. She’s so awesome. But more about her at another time.

I’m going to jump now through the rest of the day to now. I’m having considerable back pain which has kept me from sleeping. I began to write this. I got half way through it. Suddenly I see my bedroom door open, but I see no one opening it. Ahh. It’s Maks. Maks is one of our awesome cats. Throughout all my ailments Maks has been my healing kitty. Cat. He’s too old to be a kitty. Just don’t mention that to him and we’ll all get along just fine.

Whenever (most of the time) I’ve been doing particularly terrible, like today and taking my leg off, he comes to me and loves me up. Right now he’s purring and clawing, I mean needing, my right hip. This isn’t where he normally lays. He usually takes up station keeping on my left side somewhere but since we got the puppy (Bailey) he hasn’t been up to see me very often. I’ve been having my son bring him up to me when I retire for the night so he can get used to puppy smells and sounds. It’s working. He’s beside me doing his magical cat thing. How the hell do they know when we need them? Of course I’ve heard about the cats and dogs that can smell/sense impending death or various illnesses. He thinks he’s one of these special and extraordinary furry companions. I agree with him.

He’s been urging me to pet him and love him up stabbing me gently and now snoring at me. The look of love on his face is wonderful. (I know what you’re going to say. Cats don’t make that kind of face and they don’t feel like that you bozo. And then I would tell you to shut your trap. It works for me.) I’ve been alternately petting him and waving his loose fir away and writing this. I like it. I feel better. He knows my alphabet is haunting me. I do… feel better now.

Tomorrow afternoon I’m having the vascular imaging done of my entire right leg. It’s weird and cool to watch. Stay tuned in to this same bat time, this same bat channel.

Wow, can this cat snore.