The heartwarming story of Laurel Ferretti is from The Lyme Letter written by Doctor Jemsek.
Battling the Ravages of Lyme Disease, How Faith Carried Me Through: By http://eepurl.com/cdzloL
The newsletter also has great information on Supplements, questions and answer section, and list of books and videos.
Xx M
Melinda :)
My heart bleeds for a friend suffering from a dark depression. Have you struggled this week? Feeling pain, fear, lonely, unloved? Tomorrow the sun rises, I pray the clouds lift bringing peace to our lives. Xx M
The leaders of the future, our children must have an education to build on. Chime in and please pass around. Let’s help find and fix problem, not set back and see. :) M
“Connecticut State Superior Court Judge Thomas G. Moukawsher threw out the state’s school financing system as unconstitutional, his unsparing 90-page ruling read and resonated like a cry from the heart on the failings of American public education.”
Some excerpts from NYTimes: An F-Minus for America’s Schools From a Fed-Up Judge:
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What is a Caregiver? A person who gives every ounce of themselves to comfort the dying.
PUBLISHED ON February 6, 2006
The caregiver posts were my first attempt at blogging. I needed an outlet to avoid dumping all in husbands lap.
My grandmother passed away in 2005 from Dementia related to Strokes. I’m reposting for caregivers who give freely every ounce to keep loved one comfortable in their last hours. Just one piece of advice if I may, Take time to clear your head, 10 or 30 minutes whatever you can do for yourself each week. I had brain drain after both of their deaths, my body was physically broken down. Due to the nature of the illness, it’s hard to take an eye off 24/7. I was fortunate we had hospice care for Granny. My grandfather was healthy enough to help, crushing to see the emotions as his wife for over 50 years slipped away.
I’m Morning and She’s Still Alive
As the main caregiver for my grandparents my hands are overflowing lately, my mind allows me to run at that level by switching to what I call “caregiver mode”. I can manage information about the drugs they take, schedule appointments, discuss test results, anything needed for the two people I love the most, who are dying and “switch back” when at home.
Before breaking her hip my grandmother knew me, though our conversations were limited I enjoyed sharing memories with her. She really enjoyed a photo book I made with many photos of her beloved dog, Blackie. Thinking about Blackie always made her smile, even though he died twenty years ago, she remembered him like it was yesterday. On the way to their house last week tears were rolling down my face, I could not stop crying. It took a few minutes to figure out what was causing so much pain. My mind had switched from caregiver to granddaughter, realizing my grandmother no longer knew me. The realization was much harder to accept as her granddaughter.We would not share our memories again. I knew the day would come and said prayers often for the memories we shared. I’m in mourning and miss my grandmother so much.
Xx M aka Warrior
Gwen Stefani has my full attention with her latest release, “This is what the truth feels like”. At 48 , after an eight year hiatus, Gwen releases new music, took her three children on tour, wrote/produced show for Nickelodeon, released a line of new fragrances and a voice over in the Trolls movie.
She appeared on The Voice last season as a mentor to help Blake Shelton’s team. During the season they wrote “Go ahead and break my heart” and fell ln love with Blake. Gwen has surprised fans by showing up to sing the song during his concerts. His fans have embraced her and she is now performing one of her songs before singing their duet. I love the cross genre or no genre. Enjoy Xx M
Please give a shout out to Gavin/sedge808, the newest member of Survivors Blog Here. Tunes dedicated to you! Welcome, let’s have some fun!
I was born with music in my ears, dancing to a beat. My baby book says I walked/danced for joy at ten months old. I don’t know if it’s true, it’s who I was. Chronic Lyme drives today, in the future the keys are mine. LET’S DANCE Xx M
For years patients have said the generic Wellbutrin doesn’t work as well as brand name. The FDA finally took action against manufactures of the generics, admitting Clinical Trials were not performed on 300 mg Extended Release tablets. Follow up test found discrepancies in Bioeqivalence. The FDA holds responsibility as well, they are accountable to the public. The FDA requires all companies who manufacture medication to prove medication is safe, effective…equivalent or not for generics. This process can take years. The over looked, the lack of testing on higher mg caused many patients to take ineffective medicine suffering higher levels of depression.
I subscribe to FDA Updates which provide valuable information.There is a section on each update showing who needs the information. When patients are on the list I ask who is contacting the patients? No-one. It’s a reminder you have to participate in your mental health care which includes staying informed. The daily updates can clog the email, I find most weekly updates valuable.
Xx M
I’m a fairly calm :) person when not hypo/hyper or in withdraw. Last night while burning the midnight oil, I tried to refresh page…Message: could not pull anything up try again. That was the start, I’m no longer calm.
I used Reader for reading a few post…..the people I follow are unchecked like I’m not following them. I followed everyone. I head to Survivors Blog Here to find the same has happened.
Today you will receive a notice the contributors of Survivors Blog Here or Looking For The Light Blog are following you,please know we were already.
Did you have WP challenges last night?
Xx M
How about a funny story to start: my oldest dog had problems waking up this morning, I thought he was dead, ok that’s not funny, I was screaming his name….nothing. Finally he wakes, I see his front leg doesn’t work. Thinking about how hard the stairs would be…..I made a potty spot in spare room. This is funny or maybe just laughing at self, I put these huge kotex on the carpet, the sticky really helped. Then I stacked sheets then his vomit towel. Lovely thought, at least he knows it’s his…..I have been trying all morning and he would rather slide down stairs than go on kotex. Isn’t that a man/dog for you. HAHA!
It’s also funny to me that kotex are in the house, Lyme created the need. I had a total hysterectomy at 28 years old. Very glad to say at 53, they got all the cancer. To top it off, since I have trouble remembering due to Lyme, I thought next year I turned 53, not a couple of months ago. Not sure how 53 feels yet.
Let’s celebrate Monday with an old Rolling Stones concert clip when they came thru my town. I can’t decide if Mick sounds worse then or now, or always. I do like many of their tunes. Hug somebody you love today. M
The FDA announced a Black Box Warnings for Opiates and Benzodiazepines medications taken together. BLACK BOX WARNINGS are the highest warning the FDA issues on medication.
I was surprised by the number of each I take daily. Call your doctor for updated prescribing information. Subscribe to the Weekly Digest for up to the minute information.
Please welcome Guest Photographer Gavin Kerslake. I met Gavin several years ago, probably thru a comment on a photo. He is a natural with the camera, his work can memorize or shine light on something missed. I would categorize his work as Industrial Realism, his eye captures the story in what others walk by without a thought.
I’m thrilled Gavin allowed me to share his work with you. I’ve asked Gavin to join us again, eveyone please go to his blog so he will say yes. Here are links where you can find Gavin’s work. I encourage you to look at his expansive collection. The first link is his blog, you will want follow for sure.
http://www.fluidr.com/photos/sedge808/interesting/
http://www.redbubble.com/people/sedge808/
There are special moments in music history, these are in the jukebox in my head. Thank you for following me and stopping by every Thursday for entertainment. Thanks for the great suggestions coming in. Have a great weekend. Xx M
For example, in New York City, where there had been a backlog of 17,000 untested rape kits before eliminated in 2003, city and law enforcement officials enacted a policy and developed a system to test every rape kit. The city’s arrest rate for rape has since jumped from 40% to 70%.”Joyful Heart now provides us with expertise, guidance and a national perspective.
They are helping to find ways to secure the funds needed to test the remaining kits and ensuring that all efforts to end this atrocity, is an important project under the direction of Joyful Heart foundation.
The federal government estimates that hundreds of thousands of rape kits sit untested in police and crime lab storage facilities across the country in what is known as the rape kit backlog.
Discuss with the men in your life. Men have wives, mothers, sisters, daughters and co-workers. Check out the interactive map on endthebacklog.org, you can see the progress for your state and city, look at how many rape kits are left untested.
One out of six men are sexually assaulted, often living traumatized without support, few crimes are reported. The information may surprise you, unfortunately it’s reality. The 1 in 6 organization provides support. I’m currently researching the organization a look forward to sharing how support is provided.
I glanced at an article today which stressed the first year in college is when a crime is likely to happen. Men also have sons, brothers, cousins, neighbors and fathers. Young adults are not aware of the dangers of college life. You can help by finding out what is important to share with your college students, it may not have crossed their mind.
Xx M
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The Disco period was great for Free Spirits, drugs flowed freely, a smell of change in the air. The music was alive, the dance floor had a rhythm like no other, leave your troubles behind and escape under the shiny ball. I started going to clubs with my father before my 10th birthday. When you have a parent with a mental illness, life can take unexpected turns. I hope you enjoy a couple of my favorites, if not pick up the request line and leave a request. Let’s Boogie! Xx M
Exciting news for Zeppelin fans, media outlets report an unknown recording of Sunshine Woman was discovered. I’m not a hard-core Zeppelin fan, who knew they could sing the Blues? Xx M
If you’re a regular on Thursdays you know I’m a James Bay Super Fan. Hold Back the River is from an EP and his breakthrough to Super Rocker Stardom. He sings of the past….we used to ride our….reflection is needed to move forward. Nickelback reflects on current times looking forward to a shift bringing everyone together. I like to think that day will come….in my lifetime? Let’s Rock.
After nine months of IV Therapy augmented with oral medication, I am off IV Therapy. It’s exciting and scary. I’m a realist, will party after doctor releases me. It is common to complete treatment only to have it return. I am optimistic and believe what you think is where you’re going. I want to find myself in good health to explore rebuilding my life.
New Treatment Protocol: One year course of oral medication
I’ve included comments from 5/31/16 office visit.
Report:
Continued severe memory loss worse since phone consultation, continued overall pain
More profoundly fatigued, pain from fall also a factor, Patient noted having more SVT, Supra Ventricular Tachycardia, lower edema
Tenderness in right knee with swelling noted, questionable hepatomegaly
Patient to follow-up with Cardiologist, MRI on right knee, continued air hunger, follow-up with Chest X-Ray
Increased dosage of Morphine Patch, patient will follow-up with labs to update ammonia, ferritin, iron and TIBC. H&H levels have dropped.
I’ll continue to fight like hell expecting a positive outcome. I will choke down the huge pills and be grateful.
Xx M
Xanax is an anchor drug in my medication combo for treating Anxiety/Bipolar Disorder. I’ve taken Xanax for 15 years, it works miracles in keeping me grounded. Working quickly is an advantage with little to no side effects, EXCEPT ADDICTION. The downside side is addiction happens quickly after starting. For me withdraw starts on second day, by fourth day I look like a street addict who would sell my soul for a pill.
The emotional and physical breakdown took me to hell. My deep secrets/scars laughed and taunted me.
Here are some of the delusions I experienced.
Learned a new language
Surviving in the desert like Jesus
Discovered potential link for Postpartum Depression
In touch with my families Indian blood
Could feel natural body rhythm
Felt small earthquake
Saw Bobcat tracks on front tree
Started writing Country songs
Tweeting Gwen Stefani, Blake Shelton and Pharrell, talked to Gwen and Blake several times, Pharrell retwetted twice. I was flooded with people wanting to follow me after seeing tweets from Gwen. I was overwhelmed.
Locked all computers down, trying to keep myself from writing.
These are some of the out of control thoughts running through my head non-stop
The physical pain is unbearable
Anger, pain, begging God to stop kicking me in stomach, wailing, screaming, throwing up, four days without food.
Having to transition back one medication a day at a time
Delayed Lyme protocol by a week, reschedule trip to DC by a month
More damage to areas already injured
Strain on marriage
Xanax is a standard drug and withdraw doesn’t cross my mind. I kept some pills in my purse, pills in my office and the remaining pills went into master pill caddy. The trouble is not keeping up with how many total pills you’ve taken. I take several addictive medications for my mental illness and 4-5 addictive medications for Lyme treatment.
I am in pain 24/7 and resisted taking pain medication instead trying to cover pain with Xanax. Two Xanax and I’m asleep a good 4-6 hours without pain. The Lyme protocol called for 4-5 addictive medications but they rarely put me to sleep. It worked the opposite and I would stay awake 2-3 days at a time which made my pain even worse.
Now all medications stay in bottle or main pill case. Photos are daily log of meds taken that day.
Don’t go thru the pain of withdraw, stay on top of how many days worth you have at all times.
Xx M
Another great Ted Talk. The story is uplifting, reminding me I can do anything if I want the goal bad enough. Xx M
Have a great day. I mixed it up this week, let me know what you think. Remember the request line is open 24/7.
Videos were taken down his week by Vevo.
Olympic athletes can face rejection daily which is broadcast for all to see. Luckily our rejection isn’t on the daily news.I hope you find tools for working thru the emotions of rejection.
Xx M
Here are the two best prayers I know: Help me, help me, help me and Thank you, thank you, thank you. Anne Lamott
I have two weeks of living to share with you. When the drugs are back in your system it takes several weeks to peak. Withdraw is on the been there & done that list. The psychological pain will linger longer than the physical pain. I am recovering from physical injuries caused from thrashing around in the bathroom. During the worst days I closed myself off to prevent my husband from seeing me. I’m resting, trying to not overdo it.
One positive from withdraw is the reminder I’m a Survivor.
I’m starting to feel human, self-critical but human. Which is perfect since I have oral surgery on Thursday.
I’ll be back in the grove soon.
Xx M
At the rate new songs hit the airways it’s easy to forget great songs from the past.Thanks to Shelton for the Simon & Garfunkel suggestion.There is nothing like an old friends. :) M
Breath is the power behind all things. Your breath doesn’t know how old you are; it doesn’t know what you can’t do. If I am feeling puzzled or my mind is telling me that I’m not capable of something, I breath in and know that good things will happen.
Tao Porch0n-Lynch, Yoga Instructor Age 96
I HAVE BIPOLAR DISORDER
MY MENTAL HEALTH IS TIED TOGETHER WITH MULTIPLE MEDICATIONS, THREE OF WHICH I’M ADDICTED TO. MY STRUGGLE WITH BIPOLAR DISORDER IS BALANCED OUT ON A FOUNDATION BUILT ON XANAX. I AM ADDICTED TO THREE OF THE DRUGS WITH XANAX BEING THE NASTIEST TO WITHDRAW FROM. LYME DIEASE HAS TAKEN MY MEMORY AND I TOOK TO MANY XANAX BEFORE THE NEXT REFILL. IT’S A CONTROLLED SUBSTANCE IN TEXAS WHICH MEANS ONLY YOUR DOCTOR CAN APPROVE EVEN ONE PILL BEFORE REFILL. MY DOCTOR WAS ON VACATION AND I WAS BATTLING THE BEAST WITHIN.
I’m on the mend, just not well enough to write a post about my journey. Thanks to everyone who has reached out to me. I was able to battle things out at home, there was a point when the questions came up, was it time to go to hospital.
Below are a few comments I’ve made while piecing myself back together. They are not entertaining, quite disgusting actually but IT’S REAL. I have Treatment Resistant Bipolar Disorder with Xanax as the anchor drug.
I’ve lived thru what doctors or instructions may mention about withdraw. IF you were not aware of what Xanax withdraw looks like, FIRST look in the mirror. It’s the patients responsibility to participate with treatment. One critical way is being aware of every angle, good, bad, nasty, uncomfortable, make you beat yourself against the wall, wailing in pain……..I feel like my worst sins have beaten me with a bat bat 24/7 for a week.
I hope one person can read the babbling and come out with something to help themselves, their children, their husband, their wife, a family member, the homeless person on your corner.
I would not spread my guts out if I didn’t believe one person could use my experience. One commitment I made when starting my blog, when it’s ugly I will fly the flag high for anyone who wants to read. If you can’t handle the language, don’t enter the post.
I’m lost without the community. My body will heal up in a few days/a week.
Xx M
ME:I just read your post about the increase in meds, yes it is scary as hell every time and that’s a gauge you don’t want to lose, it just doesn’t mean an auto NO. You are getting better at trusting, which essential to living with mental illness. Remember, it’s an illness not who you are. Think hard about the increase, what you told the doc, why he believes you need and increase based on what you’ve told him and then you can settle into, ok I’m not taking BECAUSE/I’m taking AND Committing to HOW MANY DAYS/WEEKS TO SEE A CHANGE. IF you are not 100% committed/UNLESS severe side effects/ If committed you have to be willing to go thru the adjustment your body WILL go thru. DOD you know what to look for? How long? When to go to hospital? CRITICAL questions if YOU ARE Taking.
ME: IF NOT TAKING, you can’t sit and wait until next appointment. You have to be able to articulate to doctor WHY you are not going to take. Give the doctor a chance to clear up any questions or misunderstandings. Then If you still are not going to take, no prob. ARE YOU ready to jump off that drug completely, possible some withdraw depending how long taking.OR ARE you willing to keep taking the amount of that drug and take what he suggest next which should address WHY your NOT taking the increased dose.
ME: It SUCKS, it’s a bitch, asshole any name you can think of BUT you have a mental illness, YOU said YOU were going to participate in getting your life on the rails as much as possible no matter how long it takes.
Sorry honey, the facts.
ME: Below is the HELL I’ve been in. You will recognize some of the symptoms because you have not had them in control, even though in HELL you can see WHAT the next level of hell is. This is why you can’t fuck with your meds. This is what happens in various degrees.
ME: I’m exhausted and back to bed for my whole body to rest. Please print out this whole comments, when you are starting to get anxious look at. Xanax is an excellent anti-anxiety med, highly additive and will beat the shit out of you if you fuck with it. That may help you get more in tune with body so you pick up the signals sooner. :)
ME: you are an awesome Christian Sister. The passage brought a tear. At a time when physically I’m all alone, now more than anytime I know there are friends in Christ who are there. Praying for me is a bonus. God brings people down a path, we have no idea what his perfect hands are doing, we’re going about our business. You/I/everyone crosses paths, sometimes they are the path God laid out, that intersection will bring two people together if/when God see’s a need. That is why we crossed paths, and for many others reasons we learn from each other. The last thing on my mind is a blog/my blog/your blog/survivors blog. I’m still putting the pieces of my brain back together. The rest we know is not essential and down on the want pole. Thank you for thinking of survivors, quite possibly a decision I make/or not will have a huge impact. I have to figure out if I’m ready and everyone else is aware and who’s on the boat. Keep you posted as I take another step. Day One 3:30 pm CST
ME: an older messages said moving at nano speed, NOT unless nano backwards is such at thing. Very small steps, my body is better to a pulp from me throwing myself around the bathroom during the three worst days with the beast inside. When you have a mental illness you need medication to function, if the balance is off tiny amount no prob. If you see saw is up in air and down on ground there’s a huge problem. That’s where I’ve been. Lyme has taken my memory, without knowing I took to many Xanax which I require but when you take to many before a refill, it’s hell. When a drug is classified a Controlled Substance, created to slow down addiction in America, only your doctor can approve even one pill. My Doc is half- retired and this past Friday was the absolute earliest it could be filled without my Doc phoning the pharmacy. Withdraw on Xanax which I’ve taken for 15 years is starts to get nasty after 2-3 days. From there it’s straight to hell in a blink of an eye! I learned one thing thru this, exactly what Controlled Substance means.
I’m sure you will file in your huge memory bank should you ever need. I’m off to take photos of what it looks like on paper when I come unwound.
ME: I’ve have seen bad and I’ve seen heaven. UTSW Psychiatric Hospital is where I go to have ECT Treatments to dig me out from under the boulder. It’s a truly welcome sight. I’ve learned all of the above and once I saw how a good/great caring facility takes care to get you on your feet so you and your support team can help while you and doctor work on getting me stable. I almost went there Wednesday night, a medical hospital can’t give me what I needed fast enough. I was near the bottom of the meanest beast, myself, going thru an unintentional need to withdraw. When my husband heard me wailing out of control, banging myself around the bathroom, battered and helpless except to let the beast keep kicking me. He said were going, we didn’t but he thought medical hospital and I knew it was to see my caregivers at UTSW Dallas. Today is Day One, I’m home by myself and although slow I’ve made it thru half a day. I would never hesitate to get in car to go straight there, I’ve been there 20 times.:)
Happy Monday! I’m in recovery, feeling better, dying to write about and I’ll be back in a few days. Xx M
Looking for the Light 