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Medication Overload

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*Possible trigger warning: marijuana use, suicide*  If these are triggers for you, don’t read!

Hopefully you are still reading this after seeing this picture of me smoking an MMJ (Medical Marijuana) joint.  Please don’t judge.  I have tried every medication known to man and some of them work, some of them don’t.  I’m not anti-medicine.  I’ve tried life without it and, well, let’s just say that it’s a miracle I’m still here………

Yesterday was a pretty good day despite that I had to face some hard facts.

 My Neurologist Dr. R had worked me up to 20 mg of Namenda over about a six-week  time span, and since that is helping (but only in some very small ways) we decided to start 10mg Lisinopril which is a blood pressure medication.   My blood pressure has been high (not dangerously high) since my X separated from me Dec 28, 2015 after almost 25 years of marriage.

Later in the morning I also talked to my Dr. H who had started me back on 20mg Latuda for Bipolar Depression.  That was REALLY starting to make a HUGE difference!  I restarted this blog, started photography after two years of a break and just really had me starting to feel like a semi-functional human again.  A passion for life was FINALLY coming back.

However, I had a problem develop. For a week I was falling asleep easily, but waking up at 1 or 2am WIDE AWAKE!  That is a recipe for disaster when you are trying to prevent migraine and keep your mental health stable.  Disrupted or no sleep can REALLY mess with that.  So Dr. H’s solution was to increase the Latuda to 40mg.  Not a bad idea.  However, when I was on this medication a few years ago I started to get agitated in my muscles.  The only way to describe it is that it is EXTREMELY uncomfortable.  It made me need to run around my house (I am NOT a runner so this was bizarre).  I would have to run in place and do jumping jacks and if I was sitting my legs would bounce up and down.  I’m sure there’s a name for this but I don’t know it.  I felt like I had a battery inside me turned on that I couldn’t switch off and it was SO INCREDIBLY UNCOMFORTABLE.  The only way to counter-act that (because otherwise the medicine was helping TREMENDOUSLY) was to add .5mg Benztropine.

Yet another medication.  The list was growing…… I also decided to drop my Prozac from 40 to 20mgs because I don’t want the antidepressants to kick me into a mixed state or hypomania. And Dr H wanted me to add back 1mg Klonopin at bedtime until my sleep regulates out again.  I am already taking 6mg Melatonin 1 hour before bed way and that has been miraculous up until this last week.

Oh the joys of managing multiple diseases! (….that was sarcastic).

The hard facts I had to face was that I ABSOLUTELY need meds to function even at the most basic of levels.  I have been on a buttload of medications in the past and I was told that I was emotionally “numbed out”, no sparkle in my eyes and basically seemed overmedicated.  Also, on a last-ditch attempt to save my marriage and to heed the advice of the Pain Clinic at OHSU teaching hospital in Portland, Oregon, I slowly over time, went off of almost all of my medications.  The results were that without meds my migraines were still way out of control, the depression plummeted and I was barely able to function. That is just as bad if not WORSE than being on a buttload of meds.

Yes, yesterday was a wake up call.  I’m back on meds again and things are slowly improving but I’m also going to need more meds to counteract intolerable side effects.

AAARRRGGGHHHH!!!!!  But a girl’s gotta do what a girl’s gotta do!

Let me just say this:  I HATE THE FACT THAT IN ORDER TO EVEN SEMI-FUNCTION I HAVE TO TAKE AN INSANE AMOUNT OF MEDS.  However, if I don’t, I’m in a constant state of wishing I could end my life because I am so miserable.  So……eat meds and live or don’t eat meds and want to (and sometimes even try to) die.  I choose to live.  My kids are all young adults.  It’s incredible watching them transition from high school to college and then to the working world.  Someday I’m going to have grand babies!!!!!  I WANT TO BE HERE FOR THAT AND HOPEFULLY ENJOY THE HELL OUT OF IT!

Hard facts.

Got to face them.

I’ve got to tackle this life the best way I know how and my number one priority is to live and to enjoy this life as much as possible.  I was put here on this earth to be the mother of three amazing young adults, and I want to enjoy staying here for them.  My life is not about me or how many meds I have to take.  It’s about my children having a mother who they know is THERE and that loves them without condition.  If I stop taking meds again and end up with my illnesses taking over then all I’m going to want to do is stop living.  That can’t happen.

I won’t let that happen again.  My guardian angels allowed me to survive before but I may not survive the next time.

Now back to the picture.  MMJ is another medicine I have in my “toolkit”.  Yesterday I lost my positive attitude and was feeling really sad about my divorce, living alone, having very few friends (at least ones that I can see in person and get hugs from) and facing these disabling illnesses pretty much by myself.  I wish I had a partner that would spend lots of time with me and love me for all of my good parts enough so that they could tolerate and better yet, UNDERSTAND my not so good parts.  I got out my 1g Bigfoot Infused Joint rolled in Keif from Boggy Boon, an Indica combination, (Sativas give me headaches) and all my sadness melted away.  The intense feeling of sadness morphed into a positive feeling of acceptance that still sits with me in my heart this morning. Bigfoot Pre Roll

Medication overload….I accept you, you necessary evil!

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2018 Update

20180429_0975 CWA lot has changed in life since my last post in 2012.  It will take a lot of time to explain what has happened since then.  Rome wasn’t built in a day!  You’ll have to stay tuned to get all caught up.

My children are all young adults now.  My oldest daughter is 22 and a graduate of Western Washington University in Bellingham, Washington.  She did running start at our local community college before transferring to WWU.  She majored in International Business.  She currently resides and is employed in Bellingham.  I’m one proud Mom.

My oldest son is 19 and graduated from High School Spring 2017.  He started attending Perry Tech in Yakima, Washington in March 2018.  He is in the instrumentation technician program.  It is hard to have him away from home but he is only 2 hours away and has school Mon-Thrs so is able to come home (he lives with his Dad) every Thursday night to Sunday afternoon.  That is nice, because it doesn’t really feel like he’s gone.

My youngest is 17 and about to finish his Junior year of High School.  He does very well in school, is on the Golf team in the Fall and Varsity Soccer in the Spring.  He also lives with his Dad and I see him once a week and we text almost everyday.  Next year will be a very big year.  He will be graduating, I will have my 30th class reunion and my parents will celebrate their 50th wedding anniversary.

My marital status has changed since my last post.  My children’s father separated from me Dec 28, 2015 and our divorce was final Oct 12, 2017.  I am now facing my health challenges without a partner, which used to be my biggest fear.  However, I have my parents who are a constant rock and for that I am so thankful.  I have friends that I keep in contact with via text and Facebook.

One area that I am hoping to work on is expanding my friendship base of people who live near me.  I am a talker. I need to talk.  I get ideas and figure out problems as I am having a conversation.  Speaking out loud is a very important way that I function.  I’ve found that when living alone, finding opportunities to talk is quite difficult, so sometimes I talk to myself.  When I’m in a really good mood I talk to my cat Lila.  I rely on social media to  connect with fellow chronic illness sufferers, divorcees and single empty nesting mothers and friendly people.

It’s my intent to share my daily life as well as the ups & downs of being single while fighting chronic illness.  This blog will contain personal stories and experiences, coping strategies, artistic therapy and anything else I can share that helps me manage my condition.  My goal is to be honest about my condition in the hopes that fellow sufferers will feel less alone.  I will share what does and doesn’t work  for me and I hope you will participate by commenting and sharing things that are helpful for you in your journey.  This is a place for you if you are looking for a support community.

New & Improved!

I think that antibiotic has kicked my hacking cough in the butt!  I still get very winded when walking and my voice doesn’t sound like it usually doesbut no more coughingspasms!!!!!!

I am a happy girl! My sleeping is a little off due to the prednisone.  I take my nighttime meds (my doc upped my seroquel to 3 @ bedtime) a lot earlier so I’m getting to bed about 10 or 11 instead of 1 or 2 but it’s weird because I wake up in the middle of the night.  Sometimes once, sometimes twice AND I haven’t had to take any extra during the day.

So I am seeing some improvements.  I wish I had more stamina, strength in my arms and legs but I guess this all takes time.  I went to 4 or 5 thrift stores with my daughter Myah (she even did all the driving) and I was pooped when I got done, so I still have to limit my activities.  But, my complex case manager RN from Kaiser is trying to get me into respiratory rehab, but my stinking pulmonologist won’t respond back to her requests.  She is hoping to hear something from him by tomorrow.

I finally got my Thailand pictures done, now I have to decide what I am going to do for my photography show @ the Koth Gallery in August.  I plan on having 10 canvas pieces but the room looks like it will hold more so I may do framed prints too.

I need to talk to Bill Wood and get some more specific information on the education complexities of the hilltribe children.  I’m hoping for my show to educate people about the difficulty of hilltribe children to attend school and how they need sponsors and have to leave home and live in boarding schools.

 

If I sell any photos or other custom items I am seriously consider what % to donate to This Gracious Work (the non-profit we work with on our trips and whose endeavors we aim to support).

Sleep Has Come At Last!.

Oh my, nothing better than a good night’s sleep!  My psych upped my seroquel to 3 pills @ bedtime (it has a sedating side effect) and boy did it help.  I didn’t even wake up in the middle of the night coughing so the antibiotic must also be doing its job.

I am still coughing and having a few coughing fits but nothing like before, it has improved so much.

Before dinner I left for Vancouver early.  I went to the Fred Meyer near Lonnie’s work and bought a really pretty green rayon dress w/ a short white sweater and treated myself to a necklace/earrings/bracelet to match.  I went into the bathroom afterwards and changed so I could wear something new for my anniversary dinner.

I then went to Kohl’s and found 3 pairs of shorts and a few more dresses.  I think I am all set for the weather to get nicer and summer to start!

Yesterday late afternoon I started getting a migraine so I gave myself a DHE shot.  My hubby and I were off to dinner so I thought I would nip it in the bud right away.  I rarely ever drink because it doesn’t agree with me in the headache department, but considering I had just taken a reversal and it was a special occasion (21st wedding anniversary)  I decided to go for it.  First of all he made ma complimentary mojito.  I have heard of them but never tried it but it was so delicious and refreshing.  I had a sidecar that our server mixed at the table and Lonnie had a beer! After my eyes were done crossing at the first few sips our dinners came!  I had the Schnitzler Amadeus & he had the Steak au Poivre Madagascar. Our meals (this is just a partial menu) were perfection cooked to perfection.

The atmosphere @ Amadeus Manor is amazing, built pre-1921.  They had They had huge crystal vases and giant lilies on the table as well as a giant crystal candle holder and large candle. We got to sit in front of a window that overlooks the Willamette River.  You have to  have at least an hour and a half or longer to eat, this is no fast food restaurant!

I can’t wait until we can go again!

 

Lack of Sleep

Before I dive into this pool of negativity I have to say that I didn’t have a headache today. ………ok, no wait…..I did wake up with a migraine today and had to cancel my hair appointment, but at least it’s gone now, so that’s a winning point!

Last night was the best sleep I’ve gotten in a few weeks.  Boy I really needed it, I wish it would have helped my energy level and fatigue during the day today but I’m still glad I got it because I know it helped.

The last few days have been really hard on me, yesterday especially.  I made lots of phone calls to the doctors and nurses that have been working with me to get support/advice/appointments.

My complex case manager (Holly) suggested I get in though with Mental Health because I was crying on the phone and feeling anxious/frustrated and needing my anxiety meds for that.  Besides, I have been planning on doing that anyway, I just wanted to get as much up to date info from the pulmonologist so that when I saw my psychiatrist he would be completely up to date.  Fortunately for me when I called the Psych Nurse for advice and to send the info the the psych doc she was able to find an appointment for me today because evidentally yesterday someone had cancelled something.  That never happens!  I would have probably had to have ended up doing a phone appt but I think it was better for me to see him in person.

One of the things Mary said is that if I start getting too much sleep deprivation it is going to flare up my bipolar mood swings which I can tell is starting a tiny bit. So, in talking to the psych doc today, we agreed that I’ve got to do whatever I can to get through the next few months. I am going to up my nightime dose of seroquel to 3@ night instead of 2 which will help with sleep.  He agreed with Mary about the sleep triggering bipolar-ish episodes so that’s why he wants to stay on top of it.  Once I get off of Prednisone I can go back down to my lower level because I won’t need so much.

Also he encouraged me to take more of my anti-anxiety med called Librium.  I hardly EVER use it.  My last refill was in January and I still have a whole bottle.  So it’s not like I ever even come close to overusing it.  I have noticed that the last 3 days that I have taken it during it in the day that it helps me feel like I’m coping and tolerating things much better, but that’s only AFTER I take it and before it wears out of my system.  It’s a short acting drug, not one that stays in your system for a long duration of time.

I told him I have really wanted to walk in the last two days but my body is feeling so terrible it is difficult for me to even go up a short flight of stairs, from the car to the doctors office, etc.  I did one hour of shopping with Myah on Tuesday and it totally and completely wiped me out and that was just slow walking around the stores.  This concerns me a little because I am driving down to Vancouver tomorrow to pick him up from work and we are going out to dinner to celebrate our 21st anniversary.  I really need to go to Old Navy, Kohls & Nordstroms bbefore I meet up with him but I don’t want to overdo it!  I’m going to have to figure this out and see if I can pace myself.

My facebook status update kind of sums up my feelings about things & this day:

“If you’ve never noticed that there are periods of time where I pretty much don’t update my status and stay off of facebook it’s becauase I am feeling like crap. So I stay off because 1) I have no energy 2) my mama wisely taught me that when you don’t have something good to say, don’t say anything at all and 3) i’m afraid everyone will get sick of me if I just keep “barfing” on my status updates.”

The Seven P’s

I started this out with “The Three P’s” but over the course of writing this it was grown to Seven!

It seems like my posts are so redundant but I need a sounding board!

My eight P’s are Perseverance, Positivity, Prayer, Pulmonologist, Personal Nurse, Pot of Earl Gray Tea & the dreaded Prednisone.  I woke up bright and early this morning, yes, I actually got to sleep last night although it was late when I fell asleep due to some coughing fits.

When I woke up it had just been raining, but dry.  It looked like the perfect time to go out for a walk, and besides, I hadn’t taken any medicine yet so I had that helping me to feel good in my favor too.  It seems like after I take it I can hardly walk around my own house.

Enjoyed my 40 min walk @ Lake Sacajawea.  Even that is pushing it.  Went to the grocery store to get a few things so I get to count that into my walking time too, since it takes just as much effort……….plus the loading and unloading which works on my upper body strength.

Perseverance, pressing forward when times are tough.  I could list things I can’t do or things I am failing at but I am trying to keep it positive and look at the things I have accomplished, like: not buying the doughnut that was screaming out to me this morning in the grocery store, choosing a healthy snack of Greek yogurt/blueberries/All Bran as a snack over something way less healthy, calling the Pulmonology Advice Nurse and letting her know that I am not doing well so she can relay the message for the doctor (a.k.a. asking for help when needed), accomplishing one small task and being greatful instead of focusing on all the millions of tasks I didn’t do, going to church and going up for prayer when they asked if anyone had a need instead of hiding out in my chair and pretending like I was fine,  journaling/blogging about how I’m feeling instead of keeping it all inside.  This is Positivity.

Also, Holly, my personal RN called me for my weekly check up.  She didn’t pound my face in the ground over still being unsuccessful with the binge eating but she helped me celebrate my good choices and focus on baby steps.  One of the great things she is working on for me right now is Respiratory Therapy.  She is going to see if she can get me a referral.  They would test my lung function doing activities and exercising and guide/help me @ what I can and cannot do right now.  It would have been nice to have had this a month ago, but then a month ago I don’t think I would have realized how much I really need something like this. She is a great cheerleader to have on my team (and no offense Holly), it’s nice that she’s not a twig because when I talk to her about my struggles with eating she can sometimes add her own input which makes me be more real and feel less embarassed.

Calling the Pulmonologist this morning was such a great thing for me to do.  My appointment with him was supposed to be Friday afternoon but he bumped it up to tomorrow afternoon.  He’s going to get a chest ex-ray and see what is going on.  My instincts (although it might sound like paranoia) are telling me its something sinister.  I really don’t think I should be having all of this coughing/hacking/wheezing @ this Prednisone level I’m on……….but I’m not a doctor so it will be interesting to see what he has to say.

I write this as I am drinking the rest of the pot of my Earl Gray Tea.  I am surviving on this stuff  baby!  It is such a dance trying to figure out my med situation or am I getting bronchitis or pneumonia again…………or both?  I physically feel so tired and I physically cannot lay down.  I have to prop myself up and sleep sitting up, it works though (positive 😛 ).  The tea seems to help with the sluggishness and it’s a comfort thing for me.  Me loves me some tea w/ half & half!

Tonight my friend Amy is hosting a cooking class on Eating Raw (Vegan) with the Longview Parks & Rec and my other friend Traci is picking me up to go to it.  My Mom will be there too.  Right now I don’t feel like going, I just want to cancel; but I know once I am there that I will enjoy supporting and cheering on Amy and learning something great from her.  I’ve already sampled some of the stuff she’s made when I have stopped by her house to pick and/or drop off Sam to play with Evan & when we went to her Beach House over Spring Break a few months ago.

When cranky thoughts creep in I’m going to keep it real.  My Seven P’s: Perseverance, Positivity, Prayer, Pulmonologist, Personal Nurse, Pot of Earl Gray Tea & the dreaded Prednisone!

No headache so far today!  Yay!!!  🙂

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