Daily Life With Multiple Sclerosis - I'm Just Here For the Drugs!

Insurance took my (now late to refill) Copaxone script away from Walgreens and now I have to deal with Ohio mail order fuc*ery.

Good thing I'm just taking these drugs to get high and not to manage some scary disease or something. Whew! - written 7 months ago by RQ in her secret diary

Daily Life with Multiple Sclerosis - I Started Therapy

Hey, I made that!
And you can download it for free!

I started seeing a therapist yesterday and it was weird. It felt like everything was odd and out-of-character in some way, like everyone was trying too hard to become a part of today's story.

It is 98 degrees outside and the therapist is wearing a full three piece wool suit. Nobody else at this practice dresses that way, most are in t-shirts and shorts to be quite honest, I live in a very dress-down rural place where it's too hot to get too formal. So yeah, a three piece suit!

The suit and its vest were beautifully cared for and were accessorized by the most perfectly manicured male hands I have ever seen. Damn. My phone is buzzing...

Phone/not therapist story.....

Now the pharmacy jock on the phone is telling me about how my medicine can cause seizures or exacerbate seizures (I haven't experienced any increase/whatev) and then he goes on about site reactions and have I had any. Yes. Yesterday a few of the sites I had injected the previous week swelled up and got red and itchy. Maybe because I was out in the heat? All he said was "that's weird". Thanks, that's very helpful information.

Oh, the therapist, he seemed to like me A LOT, not like weird creepy but on the border. I do not need to be told "Out of the thousands of people i have worked with, you are one of THE MOST fascinating, funny and brilliant I have ever met. I mean that sincerely." The therapist told me that within the first half hour. IS THAT NORMAL? WHAT THE HELL?

He feels that I have adjustment related depression; I'm adjusting to having MS. He suggested I write a best seller (because I'm the most fascinating person ever and his life will never be as fascinating as the life he imagines I have had). I laughed and asked if he'd ever published anything or knew anything about how stressful and hard the writing and publishing world are.

We haven't had an actual therapy session yet, this is just all the paperwork/intake bullshit that took two hours to do. A lot of computer screen questions.

I'm still on the phone...Pharmacy jock goes over "usual side effects". 

“You may experience dimpling, indentations, that do not go away, generally after years of use of Copaxone, while unsightly, this is not life threatening.” 

Sorry, I made a laughing snorting sound. Go on.. 

“You may experience lesser effects if you rotate your injection sites regularly.”Your skin might die. No big whoop.“You may experience 'flushing'. Flushing may begin as a feeling of a heat flash immediately following an injection, generally within 30 to 60 seconds. This may be followed by shortness of breath, chest tightness and extreme anxiety. You should remain seated if this happens. You may feel that your life is in danger, this is normal, you will not die, remain seated. If you ever experience “flushing” it is more likely for you to experience it again. You can try taking Tylenol????” You might feel like you gonna die. Sit the fu*k down.

Multiple Sclerosis - Better Late Than...

Objects made of random polymers

Actually, I'm tired of things being late. My Copaxone order arrived today, four days after my last injection was scheduled.

The online pharmacy jock said "sorry 'bout that" with less enthusiasm than my two-weeks-past-due pregnant waitress who was working a double shift and forgot my calamari appetizer. I totally forgot I even ordered squid rings! Wow.

Much like the calamari appetizer, in reality, I didn't need the Copaxone just quite yet. As with any project, I try to allot some buffer time, a week to ten days of time for everything that can go wrong to go wrong with hopefully enough time to correct the errors. I don't win 100% of the time but today the buffer (drug hoarding) saved me. -written 7 months ago by RQ in her secret diary

Multiple Sclerosis - Drugs Plus Disinformation Equals Disservice

You know what grinds my gears?

Incorrect information.
Unnecessary arguments.
Promises of false hope.

My Neurologist's PA had an argument with me about Copaxone. She told me that within three months it would CURE my symptoms. Whaaaat? Yes, she used the word cure. I shook my head and as politely and quietly as possible said a few words. "That's not what the literature says. Where did you get this information?"

She told me that my symptoms would go away completely in three months. She was adamant about this. I told her that I started taking the medication with the understanding that it might help reduce the frequency of relapses, nothing more, nothing less. Shared Solutions had been very clear with me up front that Copaxone was not meant to be used for day-to-day symptom relief. Day-to-day symptom management is a different animal.The PA still insisted that the medication was a cure. Whaaaat?

Ya know, I am not a doctor, my previous medical education and work was purely clinical lab - I was all about mice, petri dishes, viruses, bacteria, DNA - a glorified bottle washer and button sorter in a lab coat!

My mind, which is thankfully still capable of critical thinking, is blown. It's perfectly fine for you and I to informally say, "Hey, I feel better since I've been taking the Copaxone!". That's great. Anecdotally, perhaps some people do feel that they have a complete recovery from existing symptoms after a short period of time. Awesome! We're not doctors. Unfortunately, anecdotes are not science and by stating such as fact you do an incredible disservice to your patients. It is both bad business and bad medicine. written 7 months ago by RQ in her secret diary

Multiple Sclerosis - The Solumedrol Days - Doggone It!

Hey Kev, is your vet accepting new patients?

Sheeeiiit. What a week.

Well, I was iffy about taking oral steroids for a relapse. The good news is that I had no side effects; the bad news is that my Neurologist prescribed me a dose of Solumedrol suitable for a small dog.

How did I ever figure this out? My friend's Chihuahua started the same regimen on the same day! Wait, Kevin the Chihuahua weighs 7 lbs and has "itchies". I, an adult female human, weigh at least TWICE that amount and had a damn MS relapse! I am looking for a competent Neurologist. My numbness has increased. My hearing has deteriorated. However, the exquisitely torturous nerve pain that has resided in my body for years has eased since I started Cymbalta. I saw a psychiatrist lately who treats a number of patients with MS. I am hoping that this ninth attempt at better living through chemistry works better than the previous eight. written 7 months ago by RQ in her secret diary

Multiple Sclerosis - The Solumedrol Days - Flair for Flare

Sh*t. Oops. Started Solumedrol today after two days of thinking I could ignore my body. Increasing numbness on my right, wild mood swings, seizures, fatigue so intense it felt like I was dragging my tired ass, a baby and a lead doppleganger of myself...and WHAT? I can't hear for sh*t right now and my vision is blurry.

Obvious Life Protip: ask for help, take naps, and you can't win by ignoring symptoms. Take it from me kids, being a stubborn ass will just land you in trouble. written 7 months ago by RQ in her secret diary

Daily Life With Multiple Sclerosis - Sunday Funnies with Señor Buttpaste

Happy Sunday!

My assistant, Señor Buttpaste, has successfully given me a cold. It's weird, I feel GREAT otherwise this morning. How about you?

-written 7 months ago by RQ in her secret diary

Seize the Diary - Daily Life With MS - Happy Friday!

I am feeling happy but also fatigued and sore today. Taking it easy.

Hugs to all, especially those who have cheered me up on so-so and bad days.

Happy Friday! And happy birthday to my granddaughter!

Daily Life With Multiple Sclerosis - Caca-latte! It's Time to Paint!

My grandson calls chocolate caca-latte. Melted milk chocolate is the color of my kitchen and livingroom. I have a few tiny spots of paint to finish today. I LOVE IT SO MUCH!

I just finished my work for the day.  Now it is time to rest, inject disease modifying drugs into my left glut, take another 1000 milligrams of anti-epilepsy meds and finish that paint!

Oh Yeahhhhh!

Secret Depression Diary Archive - Thursday's Jam

--Thursday's Jam--Watching Williams and Sharapova on ESPN this morning. Today is my day off! On most days, for the past month, my 9 month old grandson has stayed with me while his mama is at work. While I am not capable of caring for a baby by myself, I can care for one with major assistance. I can do anything given I have someone else provide 100% full-time backup to do the job for me. Heh. It's good. It keeps me connected to my family. It's good even at times when I can do little more than lie down and watch my grandson play. It's been a week full of medical testing appointments and baby shuffling. I put off starting Copaxone for another day. Maybe tonight. No pressure. I was going to start on Tuesday but I was a sobbing exhausted mess covered in welting mosquito bites by the end of the day. I don't know why but mosquitoes and bugs in general love to bite me. written 7 months ago by RQ in her secret diary

Daily Life With Multiple Sclerosis - My Grandson Called

Secret Depression Diary Archive - Zero Fax Given? Part 3

My appointment sucked. The Neuro spent a whole lot of time trying to make excuses for the staff. "The prescriptions take a long time to fill because the insurance companies..." I cut her off. "No, your office is incapable of sending paperwork in a timely manner. I go round and round talking to your office, my insurance, my pharmacy, etc. I do know who has or has not received what.""We had a girl quit and everything blew up..." I don't care. Seriously. I don't at this point. It's a ridiculous excuse to use when you are denying patients basic care. I was then asked why I didn't start my Copaxone until July. "Because you can't fax." I explained this "not giving a fax" issue all over again.So how did things go with Shared Solutions? "It didn't. No fax." Any issues with the injections? "Not other than turning this into a DIY project, no.""Ok, so your blood-work looks great on the Copaxone and your MRIs are stable and why did you want your medical records?"Seriously. Now the Neuro was asking WHY I wanted my records. Also, I had NOT started the Copaxone before the last labs and MRIs. (After my appointment I looked at my labs, there were some numbers out of range, this was never mentioned. I'm not sure if the Neuro looked at my labs and MRI reports at all. Normally I review all of this info prior to appointments. Gah.)"I want to go to a therapist. Ok?"The Neuro made a weird face and asked 'Why?'.Why? I had to explain WHY someone with MS might want to see a therapist?We went over what prescriptions I need refilled and she checked my reflexes.
The appointment was over.I went to the appointment desk. I was handed my written prescriptions, given my October appointment date and told 'bye' with a finger-point to the door. "Ok, wait. Let me double check this. There's a prescription missing. Was it faxed to the pharmacy? I know that one doesn't have to be written."I wait at the desk 15 more minutes. "Oopsie, the neurologist forgot that one. Here ya go, I had her print it!"I walked out the door, around the building and back into the front door. "Excuse me, do you have my medical records ready?"Everyone at the front desk looked away. A staff member I normally don't see rushed up to me with an orange envelope.I said thank you. written 7 months ago by RQ in her secret diary

Secret Depression Diary Archives - Zero Fax Given? Part 2

A man in the lobby had also been yelled at by So-and-So and was now looking at me while his eyes began to fill with tears. He had been waiting for hours to have his own issue resolved. He asked me what was going on. I LOUDLY began explaining that apparently it takes months to get anything done here and you can't ask for anything without a string of people yelling at you. That's the system! The man leaned on his cane and we continued talking back and forth in the lobby for a few minutes. He asked me about other neurologists and I let him know that there are a number of practices that my own insurance doesn't cover but his might.I guess we were speaking a little too loudly. I guess I was trembling and crying a little too noticeably. The office manager shuffled me into a door and then into her cubicle. She began by making excuses. Excuses are neither management nor medical care. "Why do you want your medical records?" This was twice now I had been asked by the a staff member. Honestly, does it matter why I want my medical records? I have the right to a copy of them, do I not?It felt like when I was telling my junior high boyfriend that I wasn't going to break up with him. "No, I'm not leaving you for someone else. I just want my hoodie back."Damn.I was emotional but rational. I started by asking why it was impossible to change the address of my default pharmacy in the computer - the address was incorrect, the pharmacy in another town, and with every prescription I have to call and fight to have my meds sent to MY pharmacy not some pharmacy over an hour away in a different city. The office manager was surprised when she pulled up my chart. "Oh wow, why hasn't this been corrected? This isn't your pharmacy."Ya know, I don't know lady, you're the one who has been managing the place for 19 years. I didn't say that. Why is it going to take another week to get my medical records?"Why do you want your medical records?""Listen, I have the right to my medical records. If you MUST KNOW I want to go to a therapist. I'm not leaving your practice. We are like so totally not breaking up. Ok?" That time I did say it. I also told the manager that I was the lucky because I possess the cognitive function necessary to constantly track their errors and fight them for every scrap of paper. Other patients are not so lucky. I would gladly do 100% of my own administrative paperwork but unfortunately I'm not authorized to perform pieces of the process, that I need from you.These are human lives your are dealing with and quite frankly I get more compassion out of my grocery clerk than anyone in your front office. I literally cry with happiness when I go anywhere else for medical care because I am treated like a person."You'll have your medical records when you leave today." Ridiculous. I'm a 43 year old woman and I had to make a scene to get my medical records.

Secret Depression Diary Archive - Zero Fax Given? Here, Have a Bitchfit! Part 1

In the continuing drama known as "My Neurologist's Office", yesterday I found myself face-to-face with their medical staff. I signed in to wait for my appointment. I was there to review my most recent MRIs, labs and let them know how Copaxone is going for me so far.The majority of the staff at my neurologist's give zero fax and zero f*cks about the treatment and care of their patients. To them we are not really patients, we are a f*cking nuisance and why the f*ck are we bothering them. WHAT?! WHAT DO YOU WANT?!! NO!!! That's how things run in their office. There's a whole lot of anger directed at patients and not a whole lot of evidence of basic medical needs being met.It took me two months to get the following things accomplished through their office: faxing a pre-authorization form to my insurance and faxing a prescription to my pharmacy so I could start Copaxone. This process was screwed up every step of the way. This process was only completed because I called them 3 times per week to "follow up". Why do I need to call 24 times to get two pieces of paperwork faxed that I was told were faxed while I was in the office at my last appointment? (Insurance and Pharmacy? They took under 48 hours to do their jobs. Impressive.)I gave up on the neuro office ever returning a call or fax to Shared Solutions. Seriously, someone from Shared called them every few days, they too were eventually frustrated by the lack of communication and Shared reps began to call and ask me to if I could help get through to my Neuro. Ha! Ya know what? Mentally I did not have it in me to add another item to beg for. Eventually Shared got someone at my neuro's to answer the phone and verify that I have a Copaxone Rx. (The very next day I got a pack of Shared swag. Kudos.) I'll take my fifth injection soon and at this point I do not feel I need a trained nurse to stop by. It would have been helpful a few weeks ago.There's something else I have been "following up" on for months, my medical records. I asked the front desk if they had my medical record request. They did. How soon would they be sending my medical records? Yes, just mail them directly to me, as written in the request. "Hold on, you'll have to ask So-And-So" the front desk assistant said.So-and-So grouchily yelled at me from behind the front desk, "Friday, hrmph!"Wait. It WAS already Friday.I quietly asked, "Next Friday?"So-and-So glared and yelled at me, "HRMPH!!! IF I HAVE TIME, MAYBE, MAYBE LATER THAN THAT!!"Seriously?I walked away from the front desk and sat down for a few seconds. I could feel my body trembling from the inside. My eyes began to well full of tears.

Painting the kitchen today.

Secret Depression Diary Archive - Hang In There Kitty

Seriously? My neurologist's office just left me a message at 8:30 AM letting me know they are "working on" getting that fax to Shared Solutions and that they have "called numerous times" and that "someone finally answered today so I got that fax to send back to them" and "I'm working on sending it back".Faxing - the esoteric art of not sending information between two businesses. Faxing - something that takes my neuro office an average of 52 days to complete, a record average that is being blown out of the water with this Shared Solutions fax and my request for medical records which have been drifting in the ether for 66 days. Yes, yes I do track everything. Seriously. I almost want to call them back and congratulate them on taking longer "working on" this than it takes for cat gestation - dudes you took so long I could have adopted a pregnant stray and had kittens by now. Hell, it's been 66 days, at this point leaving me a message saying you are "working on" something is not helpful. It makes me feel embarrassed for the office admins who work in that horribly mismanaged medical office.Anyhow, it's only Tuesday. Paws crossed for everyone to have good days and remember to hang in there kitty! posted 7 months ago

Mondays

Staring into the sun and squinting - featured in every childhood photo ever. 
You kids have it easy nowadays, what with your selfie sticks and all.

My Love Bugs

Secret Depression Diary Archive - Necrotising Fasciitis!

Yesterday I started Copaxone.I chose the ugliest spot on my abdomen, you know, just in case. "Necrotising Fasciitis!" My brain bounced back to an old Pathology lecture. The screen in the front of the room filled with images of decomposing flesh. This is not the time to think about dead flesh. I never show my stomach in public anyhow and my boyfriend can't see shit without his glasses, so even if this Copaxone goes zombie flesh on me, I can handle. I put on my headphones and sat down. Everything is easier with music. Always. The prep and needle stick were uneventful. Most of my previous careers involved sticking sharp objects into living objects. Wow. That's quite a bit of liquid to inject. Welty fire. Not WELTY FIRE just Welty Fire. Jalapeño not ghost pepper. It wasn't FUN but it wasn't terrible. Meh. The welt is almost gone today. Whew. No biggie. posted 7 months ago

My Book - Love Letters 2 - Be My Valentine

Oh yes indeed, Love Letters 2 - Be My Valentine will be LIVE world-wide on Amazon beginning tomorrow on Valentine's Day! It is my second collection of love letters written by people all over the world and produced in under 24 hours!
#loveletters2016 #crowdsourcing #valentines #amazon #book #ebook #global #mswarrior

Back to work!

Raquel

Secret Depression Diary Archive - Irked

Irked. Specialty pharmacy calls me this morning. Not only was my Rx sent to a pharmacy an hour away but my Neuro requested 20 mg of Copaxone 3x weekly. (You and I both know that the 20 mg is daily and the 40 mg is 3x per week.)Specialty pharmacy nicely pleads for me to "follow up with your doctor because they never return our calls, maybe they are better with patient calls."They don't return my calls either. Ever. I did call. Shock. The assistant answered and assured me that everything will be a-ok. I repeated everything in simple language three times. 40 mg Copaxone three times weekly. Send to X pharmacy ONLY. Repeat. Repeat. Thank you so much. Thank you. Thank you. I honestly don't believe a word. Nothing I have requested from my Neuro has materialized. I have another round of MRIs in a month to check progress with this new med I have yet to take. I wait. We all wait. I try to focus on other things. Rather than cry today, rather than allow the fear to creep on in, I'm writing this post. The tears are swimming on the surface of my eyes but don't fully materialize into running tears. Breathe. And then I'm going to go smoke weed, meditate and listen to music for 20 minutes. posted 8 months ago.

David Bowie Valentine

Today I got this freaking awesome David Bowie Valentine from a pally in NH!

Secret Depression Diary Archive - Rant Rant Rant

It'll reach 104 in my part of AZ today. The air conditioner is holding up and I am fine. Rant ahead. I am still waiting on Copaxone which is now "being processed" by the wrong pharmacy in the wrong town and will eventually be delivered to me. I guess. Insert giant comical question mark. I have no idea what is going on. The current pharmacy refuses to transfer the Copaxone Rx and claims they've already sent the script to their specialty pharmacy yesterday. This was the first contact I had with Pharmacy-i-didn't-want. Can I transfer the script next month? To my pharmacy? Nobody knows. I'd really rather go to my nice pharmacy 2 minutes from my house than wonder if a pharmacy an hour away can ship meds to me. Every freaking time I go to the Neurologist I have to specify MY PHARMACY. 80% of the time they eventually send to my pharmacy and not some freaking town an hour away that is almost always one degree off in temperature from Death Valley. I despise failure that I have no control over. This is the little stuff that chops away at me. My preauth was not done for weeks ( why do I have to call and follow up on this stuff daily?), medication not ordered equals a dozen more calls, my insurance is always an hour plus call and everything goes in circles for hours and hours only to be repeated the next business day. It's not as bad as the 3 hours spent being hung up on and yelled at repeatedly by strangers on fuzzed out phones who my insurance contracted for transportation. After many voices and many hang ups, finally, someone said no problem we can handle your medical transportation arrangements. You should have arranged your appointment at a better time though for us. Pardon? There was a six month wait for that appointment. I was offered an 11PM bus on Greyhound with 6 hour ride, appointment not until the next afternoon and bus back following night at 11 PM. I was trying to wrap my head around how it would all be ok and I still wasn't sure how I'd get to my appointment, cab from bus depot to big hospital complex I don't know. I could do that if I felt good but I was in the middle of an exacerbation and damn, you know, it's like the walls are caving in all around. I never made it to the appointment. I hung up the phone and cried for three hours instead. It didn't matter. A few more tests and my Neuro had a diagnosis to work with. posted 8 months ago.

FREE LOVE & FREE BOOK

Today I would LOVE to get a love letter from you! 

Send it to rq@seizethdiary.com

It's Lunch Time Love Hour!

Share Your Love - Send a Love Letter Today! See Your Letter in a Book on Valentines Day. Download the new book for free on Amazon on Valentine's Day!

Dearest Valentine,

Last year over 150 people wrote love letters.
Today I would LOVE to get a love letter from you!
You can write a love letter to anyone!
Email your love letter to: rq@seizethediary.com
On February 13th I will open my mailbox.
I am excited to see how many love letters I will get.
On February 14th I will publish a second collection of Love Letters.
I will include at least the first 150 love letters I receive.
I will share that collection with you for free.

The first edition of Love Letters is also FREE for a limited time! Get it on Amazon today!


P.S. Shout out to all of you living with autoimmune diseases and/or depression. I was diagnosed with multiple sclerosis last year. I have never struggled so much nor been so happy in my entire life. I am surrounded by so much love each and every day! heart emoticon
P.S.S. And thanks for reading and participating in my lunch time projects.

Yours Always,

Raquel

‪#‎msawareness‬ ‪#‎mentalhealth‬ ‪#‎sharemorelove‬ ‪#‎valentines‬ ‪#‎love‬ ‪#‎freebies‬ ‪#‎free‬ ‪#‎cheapvalentine‬ ‪#‎loveletters‬ ‪#‎crowdsourcing‬ ‪#‎publishing‬ ‪#‎author‬ #lovehour

Secret Depression Diary Archive - Copaxone and Canine Gestation

I'm skimming what I just wrote below and thinking don't hit post. So... POST. I've had my Epilepsy under control for a few months and now I focus on Multiple Sclerosis. I'll start Copaxone next week after my regularly scheduled MRIs and labs. It's here. It's in my refrigerator. Did you know that a pregnant dog carries her puppies for an average of 63 days prior to birthing? It takes nearly as long for my Neuro's office to fax my prescription for Copaxone to the right place with the correct prescription information. It took 52 calendar days to get my Neurologist's office to correctly fax my freaking prescription! I love calling 3x per week, staying on hold an hour and leaving detailed messages for those rude a-holes. My pharmacy only took 24 hours to fill the prescription. They rule! I love my pharmacy folks! They are always friendly and helpful. I still need to buy a few supplies to perform these injections. My neurologist's office didn't send The Form to Shared Solutions who provide training and supplies for free, given your doctor sent The Form. Shared solutions cannot get a response from them either. I have my meds though! I will start my injections next week after my MRIs and lab work.posted 7 months ago

My Life Right Now - So Much Love

Tomorrow I will begin sharing a series of my private journal entries with you about my struggle with depression last year. I was newly diagnosed with multiple sclerosis. I was in a state of free-fall. Today I have found my wings again and I am soaring.