Toothache, and the Power of Positivity

Slept late today.

Was up most of the night with a horrible toothache on my cracked molar. I tried everything! Ibuprophen, Brushing it, soaking it in Vodka, Tooth numby stuff, heat, cold, pressure, nope. At 5 am I gave in and took a Vicoden, THAT worked. Hoping my insurance hurries up and approves the dental work I need done. 

I feel alright today so far, achy arms but nothing I cannot handle by distracting myself.

I need to clean up more today. Setting easy goals. Got the tree put up last night, the pretty lights make me happy! It's the little things... I am realizing mood and attitude matter SO much, and atmosphere hugely contributes to it.

Note to self! 

Make a list of things that make me happy and create an atmosphere that promotes positivity.

Our Dogs need Christmas Presents! They have their own stockings. Empty so far.

The air outside smells like snow. Might get some later! Psyching myself up to tackle cleaning the bathrooms.

Lyrica forms sent!

Good day.

Restless body syndrome and aching right now..

But earlier my mom came over and we took all needed Lyrica forms to Dr. Snow, he filled them out and we personally faxed it all at Staples to the manufacturer Pfizer.

I have confirmation that they DID receive the fax. Putting that in my important papers pile.

We Stopped at WalMart, thankfully they had a scooter chair available. Starting to get good at driving them! There is no way I could keep my balance long enough to shop without using one. Mostly people are indifferent, but occasionally I get one of those "looks". On the outside I look like a perfectly healthy person. I don't have a broken leg, or crutches or anything. Some people are quick to judge when they cannot see your illness. Not that it bothers me, it's just an observation.

Glad to spend time with my mom, it has been a weird couple days and having "Mom time" really helped boost morale. ❤️

Emotions

Was feeling GOOD this morning!

Today is the second day of no Gabapentin and I feel much better because of it. No more hot flashes and nausea!! Trying to clean up a bit, one hour in and everything hurts! Legs are dragging behind me. I want to put up a christmas tree but just clearing a spot for it wore me out. Plan was to work for a bit and then rest for a bit. Emotions got in the way.. Everyday like clockwork My emotions get out of control at 4:00. I joked with james that it rains everyday at 4:00 in florida, I cry everyday at 4:00. Mood swings have a lot to do with gabapentin. (And now the moody withdrawal from stopping it) I cannot shake this awful feeling of impending doom, and the feeling of a dark depression setting in. It feels like the end of the world, its a serious sense of urgency. Hoping this will go away soon.

Gabapentin, Prednisone, Teeth, Obgyn

Let me rewind on what is happening.

Went to my oral surgeon consultation on Monday the 21st, they xrayed and agreed I need not just one but five back teeth pulled. (The product of inability to afford personal insurance, medication side effects, and I grind my teeth in my sleep) thankfully I will be knocked out for that. They have to get the ok from insurance and hopefully can get me in within a month. They will call me with a date. I cannot continue to taper off of prednisone though, as tapering causes stress to the body and I will heal better if I stay where I am at with prednisone dosage until I have had the surgery and have healed.

This is day 5 of 7 tapering off of Gabapentin because it does not work for pain, and has awful side effects. For 4 days I took half the dose I was taking, today I start taking 1/4 of my normal dose for 3 days then I will completely stop.

Hot flashes and Nausea has improved SO Much.. But my emotional state is even more fragile and random because of withdrawal. Pain level has not changed.

I made important calls yesterday.

I called Pfizer the manufacturer of Lyrica.. I had called last week and they said to call back in a week to check my application status for their free medication program. We sent off all the needed forms Nov. 1st and they STILL have not received it. Pfizer pretty much told me to start over again as somehow the mail never got to them. So my very personal information is lost somewhere in the mail. (Great)

I kind of lost my shit with that news.

This means refilling out the forms, which really is not a big deal on my part. Its getting my doctor to fill out his part, sign it all and re write a prescription to send as well (This is what pfizer requires). So I am looking at another month+ to get any help with pain.

I really do not think I can handle anymore mental trauma so for the time being I am still holding out on the Cymbalta. As bad as the pain is, I would rather feel physical pain than have my world come unglued in my head.

I left 3 messages with my primary care regarding filling out new Lyrica forms. If I do not hear from them today we are going up there on Monday and physically going to wait for him to fill them out and sign. It takes all of two minutes to do. Last time I Ieft it with him it took a week and a half. ☹️

The positive news!

I talked with my insurance about the three surgeries I will need. 

Hysterectomy - Covered if it is medically necessary

Double Mastectomy - Covered if it is medically necessary

Reconstruction - Covered if done within 3 years of Mastectomy

I talked with my insurance case worker about finding a gyn/obgyn as a starting point towards a hysterectomy. The medicaid system is so screwy. I can access an outdated list online of doctors who take my insurance (supposedly). More than 80 percent of the doctors do not take Medicaid any longer. My case worker has access to a different list that she says is supposed to be updated every week, yet the list of obgyn docs she gave me to call, more than half of THOSE have not taken medicaid in over a year. Seriously I could revamp the Medicaid system regarding doctors to be 100 percent correct with all the doctors and specialists I have called. And what is the use of a case worker anyway? I am still doing all the legwork and fighting to be heard, and still have to stress myself out to the point of crying and that results in awful symptoms that can last for days.

I did find an obgyn.

It took an entire day of phone calls, and then another day of calls back and forth to get my records faxed to him but I have an appointment! 

Dr. Richard Rafael on Dec. 15th at 1:00

The others who took my insurance were generally booked till march/april so Dr. Rafael it is.

Who knew that my body and life would fall apart after turning 32. 

Upset

IUpset and ranting.....
Its days like this that I just want to say fuck it all. Fuck every single bit of it. I am tired of fighting the fight with every single goddamned doctor. It is so distressing I want to give up on myself, the world, and everyone in it. My emotional state is fragile... No more pre-multiple sclerosis cool, calm and quiet and nice Vanessa. Something has just fucking snapped in me today, I have no more patience for stupidity and incompetence. I Just don't. I can only be nice for so long whilst being treated like I do not exist, and that my issues do not matter to my doctors, even when they are emergencies. I can take a lot of shit in Stride, but There is a limit of the amount of shit I will take and add to my shit pile before I explode. And explode I did. 

Calm and quiet does not get you anywhere within the medical world I have realized. I have to be angry and loud and demanding. Something normally foreign to me, with the exception of days like this. I have not only a rising anger at those not doing their jobs, but this anger turns into sadness as well. Which turns into unstoppable tears, and me bawling my eyes out because the entire big picture is so fucking sad and ridiculous.

Healthcare is so SO broken.

Why can't people people just do their job? Do they not know that their mistakes are directly affecting people's lives and ability to get the help they need? Setting emergencies back weeks even months!l Jesus fucking christ. Faxes are not that hard. But somehow SOME how they ALL get lost in fax land. Not one doctor not two.. Not coincidence. It happens at every single damn doctor I see. They cannot get a fax to its destination. I have to play fax tag all day long. Faxing office has faxed, receiving office never received. Seriously this is a huge problem! How many days have I spent my ENTIRE day playing fax tag? I can't even count. That is not even the tip of the iceberg as far as issues with doctors/staff. Is it because the city likely has a monopoly in the medical sense? We are one City in the middle of the friggin desert, options as far as medical care are very limited. I am frustrated, and had to write it out.

Stress is through the roof. Taking calm-down pills before I make my NEXT set of calls. Ugh...... Rant over.

Plan of Action

10 am

I just called Pfizer, the company who manufactures Lyrica to check on the medication assistance program status. Lyrica is the only non narcotic medication that works for my neurological pain with no side effects. It has almost been three weeks since I sent the forms off, they have not processed them yet, said to check back in a week.

I have decided NOT to start Cymbalta until I know the verdict on Lyrica. I am honestly terrified to get off of Effexor, and mess with my mental meds. The awful nauseating world flipping side effects of not taking it (withdrawal) is far worse than any pain or symptom of MS. I have come off of Effexor once, dying would be more humane. My doc did explain that Cymbalta is much like Effexor but covers a broader spectrum of illness (neurological pain). BUT it is not the same drug. I am very leery to mess with a good thing. I Will If I have no choice as far as pain management. 

What other changes is Dr. Vanessa making?

- Starting Today: Stepping down from 30 mg Prednisone to 25 mg Prednisone. Will stay at 25 mg for 7 - 10 days. Armed and ready for possible complications (hives and anaphylaxis) Epi Pen and Benedryl and Phone within reach at all times.

- Starting Today: Stepping down from Gabapentin, from two pills twice a day to 1 pill twice a day. (2400 mg to 1200 mg) will do this for four days and adjust accordingly.

- Will be researching D-Mannose or D'Mannose. A type of sugar our bodies cannot use, it's only use is that it bonds to the walls of the Urinary Tract and Bladder and the sugar attracts bacteria, and it is then flushed out when urinating. Is that not really cool? My Primary doctor is integrative medicine.. Western medicine meets holistic. All things are considered.. It is just a shame that he cannot call out a prescription for supplements!

- Will be researching activated Curcumin with black pepper in pill form. I have organic Turmeric but he was adamant about this specific combo which will help with inflammation better than straight Turmeric. Laura I thought of you when he mentioned this!

I am hoping my insurance case worker who is supposed to help organize doctors for me gets in touch soon. I don't really want to have to take on that task again, sends stress through the roof, and stress always=worse pain and symptoms.

Need to: research neurologist nuthi

Neurologist, Geneticist, Primary

So!

I saw Neurologist Dr.Kreiss yesterday, and Geneticist as well. Saw my primary care doctor today.

Neurologist

- I explained as quickly as I could my medical history

- Not much he can do since he does not have my physical medical records (mri spinal tap, diagnosis date etc. which he sent off for)

- Agreed that I should taper all the way off prednisone

- Agreed I should stay on Tecfidera

- Thinks I should stop Gabapentin

- Wants me to try Cymbalta for pain 

- Recommends aqua therapy

- Does not know if his office will continue to take my insurance so I should also book an appointment with another Neurologist (nuthi) just in case his office drops my insurance.

- I see Dr. kreiss in another 4 months (his soonest opening)

Dr.Slotnick geneticist

- He explained much of what I have already known. He recommends for gynecologist 

Peter Lim, or Elizabeth Hudson. For Surgery Jim Harriss and Michelle Chu. He also explained that the uterus has nothing to do with BRCA1 and does not need to go, but double check with gyn and surgeons.

Dr. Snow Primary

- Agrees with tapering OFF prednisone totally

- Agrees with stopping Gabapentin with taper

- Agrees that Cymbalta could possibly help my pain. (However, it does not mesh well with the Effexor I take, and I would have to stop Effexor with a taper. Neurologist did not catch this mistake)

- Suggested I get Dimanos (sp) ? Dimanos helps you eliminate all your pee and is a supplement. Take 1 Dimanos while on antibiotics then 1 in morning 2 at night.

- Suggested I get activated curcumin pill with black pepper supplements for inflammation.

- He thinks that the surgeries would be for the overall betterment of me, not just cancer prevention.

NOTE I called Rachel the insurance case worker to help me find surgeons and gyn. Left a message.

Pain!!!

Ohmygosh.

Pain is bad this morning. Woke up at 9, by 9:30 I was so done with the day. Intense pain in shoulders to my wrists, and down my legs. Have you ever dislocated your arm from its socket? That is what it feels like. Without the dislocating. Tremors and weakness are bad today too. Took everything I could to make it to the kitchen and make some tea and collapse back into bed.

Took my last donated pain pill a minute ago. I was holding out trying not to take it, but this is ridiculous.

Tomorrow! 7:30 am....

FINALLY I get to see a Neurologist tomorrow after waiting many many months. I have so much to say and ask, I feel as if I need an entire day with a Neurologist. I am nervous too.. I do not know how long my allotted time slot is and I have a whole lot of things to address, and likely booking another appointment after tomorrows will be another few months. And my printer died.... I had planned on printing a brief summary of my issues, my questions, my med list etc. My physical writing skills are horrible now, seriously... A kindergartners handwriting is better than mine due to One of the many joys of MS. 

Also Tomorrow! 1:00 pm....

Meeting with my geneticist about my bad news. Positive for BRCA1 cancer gene, he will discuss my options. Boobs chopped off, reproductive organs out is recommended procedure to reduce my very high risk of cancer now. Reproductive organs would be first surgery priority. But I have questions... Surgeons will not operate on those taking steroids (me). I need all my doctors to be on board here, I feel so scatterbrained.

Day after tomorrow! 1:40 pm...

Seeing my primary care doctor, and reiterating any information I get from my Neurologist and Geneticist as well as my huge list of things to address.

Ok, pain pill is starting to work. THANK GOODNESS!

They do make me overly chatty, but I am just gonna roll with it.. The more stuff I get out of my head and somewhat tangible and readable the better. I have a "pain clinic" appointment sometime in December. My primary will not give me any pain medication while I wait for the Lyrica manufacturer to give me an answer.

Doctors are recently so severely scrutinized and penalized for prescribing narcotic type pain medication to their patients, that they just won't out of fear. Even people who TRULY need it, cannot get the help that they need. I need a doctor with balls so to speak. 

Cracking down too harshly on doctors is counterproductive. While in theory they are trying to prevent a black market due to people getting a script and selling the pills... They are also creating a new black market. People like me who actually truly need pain management and cannot get help through their doctors. I,personally think that I am the perfect candidate for fast acting pain medication until I can start taking the non narcotic Lyrica. Through desperation and severe pain, who can I turn to to get the medication I need to get through some days? Well... Not my doctor.

Thus, a new black market is born. Not junkies, or people looking to deal drugs, but people in severe pain who just need help. It is a very real struggle for many with chronic illnesses. It's a constant fight. I wish I could let my doctors feel my pain, let them live with it for a day and then ask again if pain management is still not ideal.  

Ok I have ranted enough! My arms feel so much better than they did, the pain is still there, its always there.... But right now it is at a manageable point and not spiraling out of control.

Hot

Hot flash!
Ugh I have had four of them today, lasting about 45 minutes. Normally I get at least three in a day... Accompanied with nausea. One about an hour after I take Gabapentin. One about an hour before my second dose of Gabapentin. And another one about an hour after taking the second dose of Gabapentin.

Sent off: SSI forms and Medicaid renewal

Met with organization helper lady, after seeing how Wednesday goes with Neurologist and Genetecist   she can help me find the doctors and surgeons I need.

My entire body hurts.

insurance Case Worker?

So!
Friday an amazing thing happened. My insurance called me, and I was assigned a sort of "case worker" who helps organize your health needs and get into the doctors you need to see. I was pretty speechless, I have been trying to get such a person for most of this year but nobody could help me.

She is meeting at my house tomorrow. I am sure I will give her a run for her money. My knee hurts. Landlord is coming to help replace our heater and I am scrambling to clean. Worked too hard and down I went! Skinned it a bit.

Ultrasound

Long day today..

I accomplished water changes for my snail tanks! Yesterday I had an Ultrasound at Reno Disgnostics.. Got to see the screen, that was kind of neato. Supposedly an ultrasound will help Urology Nevada get some of the data they need to test for interstitial cystitis.

My arms and legs have been hurting badly in the evenings. 

Positive for BRCA1

On Nov. 4th I got my results from my genetecist.
I am unfortunately positive for the mutated cancer gene BRCA1. I had a 50 percent chance of inheriting it from my mother.

Classic Angelina Jolie case.... Preventative surgery before you get cancer. Chop off your boobs, and rebuild. Oopherectomy/hystorectomy.

This makes everything a lot more complicated. News was numbing at first, then I was just really pissed off that the universe hates me. Now I am coming to terms with reality. It sucks. I don't want any of this.

I have an appointment next wednesday after my neurologist to talk with my genetecist about plan of action. I have questions now... I left the whole cancer gene thing out of my head as I can only handle so much stress at one time, but now its positive and in my face. I am still in an MS flare and they will want to do surgery. Guess what triggered this MS flare? Bodily trauma. Guess what surgery is? Bodily trauma. I am on steroids... Surgeons will not operate if you are on steroids. I am in so much pain already, are steroids helping with some of that pain and inflammation? What happens when I taper totally off? I already have severe mood swings and awful hot flashes from my medication, will I go into menopause and become a raging sweaty monster? I already feel like one.

Side note, going to dentist tomorrow.
My molar cracked a few weeks back and is now causing extreme pain. In theory it could be saved with a root canal but dental insurance is only for the rich. Medicaid will only cover tooth pulls, and very few dentists will even take it. Yay for a toothless america!

Stuff

November 2nd

I had an appointment with my Psychiatrist today.
She is a very sweet lady.. I See her about every three months or so to get my psych drugs and talk about life. Everytime I see her she is a little more horrified of the things life has thrown my way.

November 8th = Cancelled
My urologist appt I have been waiting for, to see if I have interstitial cystitis was cancelled on Nov. 8th and moved to Dec. 12th. I have been on antibiotics for a month and a half for that appointment. I have to have no possible infection when they do this test, so another month of antibiotics for no reason. I don't think its good for me with such a low immune system. They are just doing it for their own convenience without much regard of the consequences of their patient.

We stopped by my Primary care's office, because I wanted to check on the status of the Lyrica form that needed signing.. They had it ready for me to mail off to Pfizer, and hopefully I will get accepted.
I had questions about Gabapentin so they got me in with nurse practitioner Annie today.

Discussed:
- Gabapentin and how it does not seem to help pain, and it makes me sick with hot flashes.

Solution: Lower gabapentin slightly in the morning dose only and see how it affects me unti I see my Primary on the 17th.

- Can I take Lyrica with Gabapentin?

Solution: Yes! My donated Lyrica is 50 mg instead of recommended 150 but I can take it together.

- Should I be taking antibiotics since I do not need them?

Solution: She could not direct me with a yes or no since she was not the prescribing specialist, but understood my concerns and there are risks. She said to ask them, which I did... They said to ask primary. Sigh....

- Should I continue with 30 mg a day prednisone?

Solution: Yes! Until primary or a neurologist tells me otherwise.

- I have so much pain! What can I do until I hear back from Lyrica manufacturer?

Solution: Pain clinic. I have appointment, not until December. 😢

Fast acting pain medications work, am I a candidate for them?

Solution. No... She would not feel comfortable helping with my pain. ☹️

Emotions

I feel a frustrated rant coming on....

Emotions are in all directions. Anger, Sadness, Disbelief, and a tinge of hopelessness. I feel a meltdown coming. Tears in the brims of my eyelids not only from the physical aching pain, they are angry tears from frustration. Holding them in, but The Seed of haywireness has been planted. My body is already responding in an awful sort of way, tears or no. 

"It's not the end of the world"

That is a fabulous reality snapper in many cases for me. But it doesn't work when I have these emotional pile ons. So many layers until I snap like a crazy person. Truly, it DOES feel like the end of the world. Impending doom.

I try to be organized, try to keep it together emotionally. But there is this this forever feeling that I should be doing something but I don't remember what. This anxiety does not help.

I am tired. Tired of being sick... I am not "ok" and I am not "better". If it seems that I am,   I am likely trying very hard to fake it. I Would love to be better.. For this "flare" to ease up. But its not. I cannot have what I have now, as a new normal. No.