Nausea, Not Pooping, Hot Flashes!

I feel kind of scatterbrained today.

I wanted to note that I have not been taking Macrobid for a little over 2 1/2 weeks. I also wanted to note that I ran out of aspirin about a week ago which I would usually take with my Tecfidera twice a day to prevent hot flashes.

- Note that I ate coffee and eggs on 12/24 and 12/29. My allergic foods. It has been six months! I can now integrate it.

- I have been having awful hot flashes and Nausea for about a week now.

- I have felt very bloated and my stomach hurts off and on for the past week. Feels like my bowels are stuck and any food I put in me just sits in my stomach and does not get digested. I just feel ooky.

I dropped off my pee at Urology Nevada, they wanted a sample a week before Urodynamic study.

Hot flashes from no aspirin?

Nausea, bloatedness from bowel issues?

My mom bought me a big bottle of laxative pills and Prune Juice!

I do have the mix in juice stuff, it is a prescription laxative but I don't think its working.

Stupid MS.

Dr. Rafael Cancelled seeking opinions

I have canceled my surgery on January 17th with Dr. Richard Rafael for a number of reasons. (He is a real jerk, and a bad doctor) I can deal with assholish doctors IF they can do their job well, but this is not the case.

He did not listen during examination when I explained that my last pap smear was abnormal. After a quick exam we sat down at his desk to talk. He was ready to sign me up for surgery, Oopherectomy keeping the uterus and cervix. I thought it odd that he came to this assumption without having ANY test results.He acted irritated that I was even there. I did have many questions!

My mom came with me and SHE happened to have a Hysterectomy due to BRCA1, meaning all reproductive organs out. That was what her OB/GYN recommended. She asked Dr. Rafael what the difference was between Ooph vs. Hyst and what kind of risk of cancer I would have if they did not take my Uterus or Cervix, just basic normal questions. He was very defensive and turned very ugly and said I was getting a free surgery from the state and that costs the state money... he asked my mom "Do you even care?" Just. Wow.

There was a moment of silence where I expected my mother to reach across and punch this man in the face, and I fiercely fought the urge not to do just that myself. We were both totally shocked. What possesses a person to think they can talk down to others? To automatically judge me because of my insurance? As if I WANTED this mutated gene?

He never did answer our questions, and the more information I wanted to know, the more irate he became. He said he would refuse to take the uterus and cervix but did not give a sound reason why. (Not that I necessarily WANT that surgery) but I did want to know the pros and cons of both and make an educated decision. It is not about money, rather it's about me not getting cancer! 

He said I should sign up for the surgery as I would likely not find anyone else to help me.. and out of fear that this was true, I felt pressured to do so and I did. After the fact, more red flags popped up. He did not even talk about hormone therapy and other important things.

After cancelling my surgery, Dr. Rafael called me to say my pap smear was abnormal, and I will need a biopsy of my cervix as there are abnormal cells on it. I had him fax it to my primary care doctor and let him know I am getting other opinions.

 I am seeking a 2nd 3rd and even 4th opinion on which surgery would benefit me the best. (Oopherectomy vs. Hysterectomy).

After a days worth of calling I have 3 OB/GYN appts setup so I can get a well rounded opinion on what I should do... 

Dr. Samuel Chacone: Jan 12th at 10:30

Dr. Holly Ashley: Feb 7th at 2:50

Dr. Dennis Martin: Feb 23rd at 2:00

Pillow Forting

It Has been a while since I have posted.

I feel like I kind of checked out from life for a while. While it's nice to live in a pillow fort, unfortunately real life is always waiting for my return with issues needing dealt with.

While MS has been a hugely physical burden, it has left my emotional state just as messed up. I feel like I go through stages. Sometimes I am really gung ho about staying on top of everything and sometimes I really feel like I want to give up, and for a while I do. I eliminate all stressors and responsibilities and live in my pillow fort. Both literal and metaphorically! 

If I stay there too long I feel guilt which leads to further depression. If I don't go there often enough I am overwhelmed to the point of making myself physically sick. Pillow forting is a fine line. Right now I am trying to crawl out and deal with life again. 

I do feel better and accomplished when I tackle tasks, it's the anxiety anticipating the probable stress associated with those tasks that gets me. I also forget what exactly I should be doing. With so many health issues and doctors I always have the looming feeling that I should be doing something. Sometimes it's just an anxiety, other times I really should be doing something important but I don't know exactly what it is. With my memory being so bad I really do need reminding. 

Multiple Sclerosis, My bladder pain issue, Oral Surgery, The whole BRCA1 thing.. OBGYN's, Surgeons, Hysterectomy vs. Oopherectomy, Boob removal, Keeping tabs on prednisone, Keeping tabs on Lyrica. It does not take much to overwhelm me. Can you see how enticing a pillow fort might be?

14 days of Lyrica

This is day 14 being on Lyrica.

During the first week pain was constant, and my body was doing many strange things. This past week I have my ups and downs with pain, my left foot has not been as numb and tingly.

My memory has been extra awful lately. Is it a Lyrica side effect? Or just MS adjusting to the Lyrica? I guess we will find out the longer I take it.

Stressful day today, spent 6 hrs filling more ssi and ssdi paperwork out. I hope we filled it out correctly. 

Spay date

I have a date!
I will be getting SPAYED on January 17th. Yes, ladies and gentlemen you heard that right...

Hysterectomy to be done as a precautionary surgery: I am BRCA1 positive (Extremely likely to get Breast/Ovarian cancer if I do not get them removed) So... next month!!

Cameras in my Hoo Hah

In a lot of pain today. 

Shoulders arms legs it just really hurts. So I went to my Urologist Appt. yesterday, they put a camera up my bladder and said it looks okay? They ordered a full Urodynamic Study that I will do on Jan. 9th. They could not tell if I had interstitial cystitis or not by looking at it.  Having a tiny camera shoved up your urethra is not fun, they told me it wouldn't hurt at all but I have a narrow urethra so everything hurt extremely bad! 

I have an OB/GYN appointment on Thursday.

I think the gabapentin is out of my system now, I no longer have hot flashes or feel nauseous all the time.

I am still waiting to hear back from my oral surgeon, hopefully they can get me in to have surgery this month.

Appointments

In other news...
Today is day six of taking Lyrica. My left side isn't as funky and I feel more right handed today. My left foot and left hand stopped tingling. I have some pretty bad generalized pain but due to me having my period that is to be expected.

One minor thing I have noticed lately is an occasional tightness in my throat, the same tightness I feel before my throat swells up. This has happened since the beginning of the week, coincidence with Lyrica? Maybe.

- Dec. 12th Monday at 3pm I see the Urologist to see if I have Interstitial Cystitis or not.
- Dec. 15th Thursday at 1pm I see the obgyn to get things going with hysterectomy.

State of Emotions

I am on an emotional rollercoaster.

It is that time of the month, which of course MS hates. Having my period amplifies all my symptoms. My highs are very high and uncannily optimistic, but my lows are extremely low and they scare me with how hopeless they make me feel. Tears flow freely throughout the day. I know that I want to be alive, to live. But when a low strikes, it strikes hard and drags me into a dark place where I have no power. This scares the shit out of me.

I do not say this lightly as I believe everybody has the power to change their situation, but in this dark confused state I can honestly say I am powerless. My will to live is not strong enough, and I find myself calmly thinking of suicide in a dream like state. I cannot even find the correct words to describe the feelings I feel when I am in this dark place. I am not myself, and that scares me. It really sucks to feel like your world is suddenly crashing down around you with no warning or reason. It just is. Clonazepam sometimes takes the edge off if I catch it in time to remember to take it.

This kind of emotional flip flopping makes me feel a little bit crazy. I second guess any decision even more than normal because I wonder to myself: Am I in an emotional funk and capable of making a sensible choice?

Even the concept of losing your ability to reason is enough to get depressed over.. 

My highs are incredibly uplifting. Everything in my life seems brighter. I seriously feel like I could take on the world, and I suddenly have dozens of projects that I want to start. My limitations don't bother me in the least and I efficiently find a way to work around them. I amaze myself actually. Best of all, I feel the warmth of happiness inside of me. I feel fulfilled and full of life. I wish that I could pause my life right there and just stay.

Having a hysterectomy will throw me into menopause. Hormones. Mood swings. I am terrified of the darkness that tries to drown me as it is. It has to be done though.

Lyrica transitioning

My left side keeps trying to lift. 

This happened while I was in the hospital as well but it was mostly my left leg. Today it's my both my left leg and my left arm. In the hospital it got so bad that I had to put something heavy on my left leg so it wouldn't lift up by itself. Also a lot of muscle spasms and clenching of muscles it's pretty painful.

 I still have a lot of tingling in my left foot and today I I am starting to have tingling in my left hand as well. I have this strange feeling of not being right-handed. I think my wires are trying to reconnect, it's the Lyrica trying to work. In the hospital I remember thinking it was the steroids reconnecting my wires but now that I'm just starting Lyrica again and feeling the same feelings, maybe it's Lyrica that saved me.

Maybe lyrica will save me again.

Lyrica has Arrived!

So..

FedEx brought me a package yesterday! Much to my surprise, it was a bottle of Lyrica! Pictured is a one month supply, $550 worth of Lyrica. I have been trying for quite a while to get on the manufacturers free prescription program. They were supposed to contact me when they received my information.. nevertheless getting it in the mail was awesome.

I have been having a lot of pain lately, which makes me depressed. Pairing physical inabilities and pain with mental depression is like having a total system crash. Me being the system.

This damned tooth is a major pain in my ass. I spend at least half my day and half my night trying to make it not hurt. I have talked to the insurance and they have not even received the paperwork for prior authorization to do oral surgery.

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.

Lyrica!

After a very painful night, I had a fantastic morning!
Decorated for Halloween, had a shower, I am actually wearing clothes today. (Instead of my usual pajamas) running out of steam now.. Pain is starting in my shoulders and tops of my thighs.

Gene counseling was easy, yup need the test for BRCA1, yup I have a 50 percent chance of having it. It is getting sent to the insurance and hopefully I will get an answer within a few days.

I had someone whom shalt not be named, donate three months worth of Lyrica to me! 🙀😻😻
Granted its a much lower dose than I was taking before, but I am soo thankful to have it at all. I need to research about drug interactions with gabapentin.

Yay Lyrica!! I am excited to get some pain releif!

The Price we Pay

Had a fairly good morning!
Luna and Bruce got a bath and nails done. James swept and mopped the floors. We both cleaned up the bedroom. My body hates me now.

Tremors really bad. Pain has settled in my shouulders and neck. It does radiate into my biceps and all the way to my wrists. Pain so bad I had to take a pill. I Have rice socks on both shoulders. This sucks.

I have a gene counselor appointment tomorrow.

Bladder Pain and Nausea

Bladder pain is back with full force accompanied with Nausea. The only way to get any relief is to sit indian style and lean back. Taking zofran for nausea.

Started my 3 day pee recordings. All that goes in and comes out.

Have not been able to get ahold of anyone at snows office about Lyrica. Have left three messages.

Random notes....

October 25th
New symptom - left leg from my knee down is opposite in cold/hot sensation. Tingles radiated down my leg.

October 27th
Severe bladder pain has started...Nausea. Took red pee pills. Bad arm leg pain.

8:22 eyesight is changing. I cannot see up close, its very fuzzy. I have to move either backwards or forwards to focus on things. Makes me a liittle sick. Bad arm leg pain.

Appointments

I have posted several posts today!
Some of them had been half written snd saved but not published til now. This post is to remind me what I am doing appointment wise.

10-31 @ 10 am - Genetic Counseling via phone
11-2 @ 11:30 - Psychiatric appt with Dr. Drymalsky
11-8 @ 4:00 - Urologist appointment
11-16 @ 7:30am FINALLY an appt with Neurologist Dr. Kreiss
11-17 @ 1:40 - Check in with my primary doc Dr. Snow

Prednisone step down

Today is an unpleasant day.
A lot of stress in my life right now. Restless Body Syndrome and pain have been increasing throughout my day. I have stepped down from 35 mg pred. to 30 mg and my physical and mental capacities are being affected. The range of emotions I am feeling is exhausting. I am tired of crying and having this overwhelming sense of urgency that I should be doing something, but I do not know what. I get very confused easily. Hot flashes and a swelling throat is no fun either. Mental side effects are much worse in my opinion.

I had a meltdown because I made "snail jello" for my aquatic mystery snails a while back and I have been meaning to cut it up and freeze it but my arms have been hurting so bad. It has been on my to do list... I guess it has been more than a week before making the batch because it has now gone bad. It's the little things like this that tops off my stress and I lose my shit. Like end of the world kind of anxiety, I just want to lay in the floor and die type of depressing thoughts. I know logically its the MS and Prednisone, but the part of my brain associated with emotion doesn't care about reason. Its days like this that I want to give up the constant fight. My arms/neck/shoulders/back ache so bad. Pain management is another issue to bring up with dr.snow.

Love/hate relationship with Prednisone.

I am trying my best to do what I can for myself amidst this hell and the delusion the the world is ending.I wish I had a personal helper 24/7

To remind myself of what I have done today..
- Called Dr. snow to check on my Lyrica fax... Had to leave a message.
- Called genetecist Dr. Slotnick to see why I needed more genetic counseling... Insurance issues.
I have a phone appt with Gene Screen now.
- Attempt to scan and print needed SSDI information but my scanner printer totally died. Just my luck. We have to figure something out tonight.

Playing catch up

Catching up!

October 23rd
 Sunday night i had another odd spurt of nervous energy.... Restless Body Syndrome without the pain. Such a strange feeling. I was wiping the kitchen counters with flailing spasm hands and wobbly legs.

October 24th
Monday was a fairly good day. First time in a long time I got out and shopped some with my mom and dropped off Lyrica forms to my doctor. It took the energy out of us both. She has a very similar and serious auto immune issue as well. Monday evening was bad. Dread in the pit of my stomach, and a lot of body pain.

- Step down from 35 mg prednisone to 30

October 25th
Serious Bladder UTI pain. Super cloudy pee.... I took my "as needed" bladder pain pills. Stayed in bed most the day with heat on my belly. Very emotional from stepping down from prednisone.

*Note to self - Do the pee study chart.

Overload

Today... Not good.
Very overwhelmed with financial situation. Lots of important things pressing my "I am going to freak out" button. Which consequently sends my body into a MS meltdown. The anxiety and stress feeds MS. It is amazing to me how my physical body shuts down when there is too much mental stress. And my mental functioning shuts down when I have too much physical stress. It is obvious now why they say stress is the worst thing for MS. Yet with an MS diagnosis and having your life as you have known it come to a complete halt, that alone is upsetting. Add your new sudden financial crisis. You can't work, you can barely walk, you have pain , confusion and loss of memory. You are on medications that have exhausting side effects.  You realize it is a fight to get ahold of needed doctors, a fight to be actually heard by them and taken seriously, a fight with insurance issues, a fight to get the help you need, your fight is to constantly prove your condition in a society that doubts you first. Keep in mind your fatigue and symptoms only worsen with each added stress. But stress is what you should avoid to manage MS. What a crappy card this disease dishes out. This isn't a pityparty but rather me putting my feelings into words so that maybe later I can disect each worry/problem into a solution. I get so emotionally caught up with anxiety that I can't think. My ability to multitask is gone. Putting more than one thing on my plate is really hard for me to handle. To remind myself of what the hell I am doing...

SSDI - Trying to say the right things to help get benefits. They say if approved i would get $825 a month which would solve most financial problems. Still need to scan and print all medical records and send to social security office before they will make a decision. Thankfully I have been dilligent in keeping anything medical related. After all is received, it takes around five weeks.

Gene Testing - Apparently my insurance would like me to do gene counseling AGAIN but with a counselor of their choice to determine whether or not I need it. Thankfully phone or video interview. I need to fill out my family tree and history of cancer, and that my mom has the BRCA1 cancer gene, meaning I have a 50/50 chance of having it myself. If that does not seem worthy of gene testing I don't know what is.

October 24th

Lyrica - I dropped off a folder to my primary care Dr. Snow with the needed paperwork to apply for free or discounted Lyrica through the manufacturer Pfizer. I filled out my bit, he has to fill out his bit... Sign and fax it. After they receive it it takes 5-6 weeks.

Other resources - Waiting for the financial help information from the National Multiple Sclerosis So iety in the snail mail. Included would be the very few resources available to me in Nevada.
One resource may be assistance with utilities.

Budgeting - I had left budgeting up to James to try to decrease my stress, but that is not working out as we are short on money every month causing worse stress and anxiety than if I had just done it myself. I am going to suck it up, take my anxiety meds and create a better plan for us.

Dog Food - I have yet to apply for assistance for this, but there are resources in my area.

Nervous Energy and Clean Dogs

Today was weird..

I had a panicky emotional morning.. after some anxiety meds and some MM everything was bearable again. I had a break in my pain this afternoon!

I took that opportunity to get our dogs washed and dried with the help of James. As a dog groomer I am appalled to say my dogs stunk like DOGS and their nails were getting long. Armed with MM and a pain pill I was able to blow dry while James washed.

Gold star goes to me for physically accomplishing more today than I have in the past week or two. And I have clean dogs!

*NOTE* To self.... no bladder pain but VERY cloudy pee today.
Also.. the TWITCH IS BACK! :( Right Eyelid.. same spot.

I feel odd right now. Almost manic..
I feel like there is a 3 inch aura of nervous energy around my entire body. I guess I could say this is restless body syndrome without so much pain. It definitely feels odd!

I am thankful for whatever this is, and just hope I don't have repercussions from getting the dogs washed...

Flowers and Resources

My mom came over to see me today, to help me with filling out some forms trying to get Lyrica through the manufacturer. Also started filling out SSDI as that would greatly help right now. Many people get denied multiple times, and can take years to get help unfortunately.Our rent is coming up short every month...

Thank you for the flowers mom! And everything really... I am so thankful to have you in my life.

I want to continue to do what I love! I love working with the dogs and grooming and an MS diagnosis is pretty crappy when essentially your profession is a focused scissor-ninja. I have to beleive that things will  ease up.

Pain got really bad today, even with MM. I had to resort to a pain pill and heat blanket on my back and arms. The pain has seeped into my shoulders and is radiating down my arms, sometimes I get sharp electrical pains shooting down my body.

Sucks.

Just trying to hang on!

Not a good Day

Arm pain and fatigue is pretty awful today.
I did not get much peace this morning before the pain settled in. Heating blanket and MM can only do so much. I figured there was no use laying in bed crying in pain so I took one of my two dillaudid pain pills I have left.
One left.

Also, worth mentioning.. I am having some bladder pain again. Not horrible pain but noticeable. And.. Having to pee like every five minutes but I can't go very much. Sound familiar?? Not cool...

Love and hate with Prednisone

Fatigue and pain is bad today.
I had a good morning.... I even pushed through then pain and cleaned up the kitchen counters. The longer I carry on with my day, the more my symptoms increase in severity.

Nothing new really.
Restless body, aching pain in my bones, severe fatigue, just really tired. Had a molar chip... Dealing with a toothache in the background. Prednisone can destroy your teeth too! Not only do I have this freakishly chubby face from prednisone, I think my teeth are affected now too.

Edibles are insanely overpriced in my area, but they help releive pain better than flower. There are only four dispensaries so they kind of have a monopoly. 🙁

So done with this

I am having an awful experience with what I can only explain as being "Restless Body Syndrome". Much like "Restless Leg Syndrome" but it is my neck, shoulders, arms, fingers, back, thighs, legs, toes.

 It is accompanied with the all too familiartype aching pain. Everything wants to spasm and twitch, but the more you twitch, the worse it hurts. Rocking back and forth helps some, but I am in bed in tears because of this. I find myself holding my breathe unintentionally because the pain is so bad. 😭😭😭😭😭😭😭😭😭

To brca or not to brca

Woke up feeling okay this morning!
Which Is good, because I had a doc appt for gene testing. I was dreading doing it, but in a few weeks I will know if I have the BRCA1 cancer gene that my mom has or not.

Waves of pain in my arms and legs now.. Eyesight is all messed up.

Moon Face

Today was a good day!
Yesterday was not.... Weird Neurological dreams the past few nights. I feel like I am being pulled in every direction. Wake up sweaty and clenched.

I was getting hot flashes the past few days, and have been very emotional. I realized that it is likely because I upped my prednisone 5mg in order to keep this cold out of my chest. I will keep taking 35 mg until I know this cold is gone, and then go back to 30.

My face is swollen and chubby. Side effect of prednisone called "Moon Face" where you get a really chubby face. Also have been battling acne, another prednisone side effect. I have been on it a few months now.

Pain

Serious pain today.
Up and down my arms and legs... It's a deep ache like bones in ice water. This is accompanied by electric shooting pains. Lots of twitching... Speech impairment. My right hand still does not feel right. Two pain pills left, trying to save them for emergency.

Thankful for my electric blanket and MM. Heat and MM definitely help decrease the pain.

Symptoms: The good the bad and the new.

I have not posted in 11 days.
Some symptoms are better, some have gotten worse.. I need to be more diligent about posting to keep track of progress. I am curious as to How much Lyrica helps me... I took my last sample dose a few days ago. It does take some time for Lyrica to enter and exit your system.

"New" symptom- I have noticed this within the past few days. The first time it happened I looked down, the back of my neck shot a bolt of electricity down my arm and then my depth perception was really off. I had to cover one eye to be able to see anything clearly. This has happened on and off, but without the electrical neck.

Worth noting, I caught a cold a few days ago. It is trying to get in my chest and For the first time in months I have a serious wheeze. I am on prednisone so in theory it should ward off anything settling in my chest.

Also worth noting, I broke out in hives last week. My mom had surgery and I stayed up with her all night. I think it was stress and pressure hives. With my next daily dose of prednisone they disappeared within an hour. Still steadily taking 30 mg of prednisone.

Some general pos. And neg.

Positives:
- Not as many neuro dreams
- My stomach does not feel as icky
- Bladder UT pain is gone! (Yay)
- My right eye is not twitching as much
- Overall pain has been better

Negatives:
- A feeling of constant anxiety, everything is the end of the world.
- Tremors and restless body syndrome have gotten worse.
- Depth perception has gotten worse
- Feeling like I am not right handed and unable to write happens more often

Good 3 Mornings

Mornings have been good again 🙂 I get at least an hour of "barely there" pain, which is really nice. Once I start moving in the morning though, body pain settles in after a bit of a delayed reaction that I am thankful for!

Bladder pain has faded to a dull pain as well. The past three days have been fairly consistent. Not so much fog in my brain, brain fog makes me feel like I am going crazy. I cannot hold onto a thought more than a second, and I cannot be in charge of anything important. It's scary.

 I have been able to make it down the hall to the Zen room and get on my desktop for the past three days! I have not physically gotten accomplishments done that I Want to get done(I know, everytime I Feel just a tad bit better I jump ahead of myself and want to do more when I should not push myself). I have accomplished getting in the shower everyday! My body feels very laggy, the message from brain to everywhere is super slow and unreliable.

After 4:30 is when things get weird.

I am so worn out physically and mentally just by being awake. Spasms, twitches, pain, numbness, loss of eyesight, bouts of crying.... After 4:30 is not fun. And this is just from "gentle"stimuli inside my own house. If I have to go somewhere it gets a lot worse a lot sooner. Can't handle the outside world!

Urologist Visit

So...
Went to my Urologist appointment two days ago with Dr. Corinna Jewell with Urology Nevada. She is super nice and very knowledgeable.

My bladder Symptoms per my own personal research pointed to Interstitial Cystitis. I gave Dr. Jewell a printed timeline of bladder issues and she said it very much sounds like IC (Interstitial Cystitis).

IC is unfortunately uncureable. It is also a chronic condition that can flare up. (Last time this happened was 12 yrs ago same song and dance). The only way to know for sure is to go in and look!

So, appt in over a month for that.

Plan of action!

- Samples of Vesicare: For Bladder pain
- phenazopyridine: For numbing bladder
- Nitrofurantoin Macro: Antibiotic so I do not get another infection due to low immune system
- Zyrtec: this actually helps spasms in the bladdder.
- Drink more water even though it hurts!
- I have a 3 day pee diary, intake and out take
- Made appt. with dr. Good for an endoscope bladder look thing.

Not so Bad

Yesterday was very painful... Today is a slight bit better.
Only one dose of AZO this morning and I am still doing okay this evening. Granted I took a Dillaudid pain pill earlier too. I think it is all wearing off.

It was wonderful to not have much pain, I took advantage of it and picked some laundry up in my bedroom, whatever I could reach from sitting on the bed. Took a long shower and fell asleep after sitting in bed. That quick of fatigue caught me by surprise. This happened yesterday as well, fell asleep for a few hours very suddenly.

Bladder pain is bearable! 👍

Bladder Issues summarized

WHOLE lotta pain yesterday, today.

Making a timeline of Bladder/Urinary Tract infections and pain since my 2 week hospital visit for a Multiple Sclerosis exasperation in July. Will be seeing a Urologist Monday so trying to be organized!

July 23rd - Released from Hospital with Foley attached, Foley because I was unable to pee (MS thing) Foley in for 10 days.

July 25th - Bladder and Foley hurting, made primary appt.

July 26th - Saw Primary Care. They took Foley out, tested pee pos. For nasty infection. Gave me two shots of booster antiobiotics in the butt, and cipro 10 day antibiotics.

- Cipro helped, felt good for a while

Aug 12th - Bladder/ UT pain is back got another refill 10 day Cipro, but Cipro not helping. Made another primary appt.

Aug. 18th - Saw Primary Care. Peed in a cup. Positive for infection. Two shots in butt and new antibiotic Nitrofuratoin Macro. Doc said this antibiotic has more oomph since I have a low immune system. Doc said if not better by next evening to go to the E.R as this could turn into sepsis fast. Also the prednisone I am taking will mask symptoms of infection like fever. Referral sent to urologist.

Aug. 19th - Bladder pain much worse, very intense. Went to E.R at Renown hospital. Pee tested 0 for infection, abdomen was x-rayed due to intense pain. No bowel obstructions. Pain meds and zofran in I.V and sent me home.

- Suffered a few days in bed intense localized pain. Things got a little better over the days.

Aug 31st - Bright red pee in middle of night, Bladder and UT pain has returned. Set up appt with primary care.

Sept 9th - primary care visit. Peed in a cup tested 0 for infection. But test indicated a lot of inflammation. Another referral was sent to urologist as this was out of their league. Bladder was on FIRE and I was very nauseated. Was given a new antibiotic Cefdinir.

Sept 12th - Feeling a little better.

Sept 15th - Bladder pain is back! Bright red pee and pain.

Sept 16th - Primary care follow up visit. Pee test 0 for infection but again pos. For inflammation. Her guess is Intercistial Cystitis? Sent referral to Urologist AGAIN. Told her I am going to take AZO pills as the pain is horrible and AZO helps (numbs the bladder).

Sept 21st and 22nd - In bed with heat all day. Bladder and UT pain is intense. Forced to take Dillaudid along with AZO for crying pain. Just waiting for Monday.......

Primary Care Visit

Visit with my Primary Care on the 16th.
This was a follow-up to my visit of suspected ongoing UT and Bladder infection on the 9th (I think).
Was supposed to get a call from the Urologist referral. (Didn't)

Morning of the visit I had bright red pee and intense bladder pain. I literally took a pic of my toilet to prove it, but I will spare you that image.

Peed in a cup, negative for infection, positive for inflammation. Primary care nurse practitioner Annie  was at a loss since this was weird and out of their league. They had been trying to get me a Urologist for over a month. SOMETHING is going on in there for sure. Antibiotics have little affect.

- Peeing hurts
- Pressing on my bladder hurts
 - Full bladder really hurts
- Pain is localized (back does not hurt etc.)

I asked nurse Annie that if she had to guess, what might be going on? She said if she had to guess it would be (something) cystitis i would have to look up the term she used. I told her the AZO pills over the counter really helped (they numb the bladder and UT) which tells her it really IS the bladder etc. But I need really do need a Urologist, as this is weird. I also got my written prescription for Lyrica! Hopefully now I can get the ball rolling with the manufacturer in hopes of free or low cost meds.

So from that visit I got:

- Referral to Dr. Kreiss the Neuro (again)
- Referral to a Urologist (again)
- Written prescription for Lyrica (Needed to Apply to manufacturer)
- Appointment To talk about pain management

Urologist called! I have an appt on Sept. 26th at 8:30
Hopefully I can wait that long.... 7 more days.

Neurologist No Go

Unfortunately I was unable to see the new Neurologist on Tuesday. They claim to have never received a referral from my primary care, and that medicaid has something new with specialist doctors called "prior authorization" office has no idea how long that can take.

So despite my desperate need of Neurological help I again am let down. Got an appt. in another 2 months. If I feel that I cannot handle symptoms on my own I will just have to go to the hospital.

New in the past three days:

- On the verge of not feeling right handed again
- intense muscle spasms
- Hot tingling body buzzing
- My knee starts to curl my left leg up involuntarily
- Bad neurological dreams
- Confusion, spacing out and not realizing where I am or what I am doing
- Slurring and stuttering

Bodily pain is increasing, fatigue is more intense, spending more time in bed.

Not on fire!

Guess who's bladder and UT is not on fire?
I guess these infections are going undetected due to prednisone? Scary. At least I have releif now due to antibiotics.

My appt with the new Neurologist Dr. Kreiss got moved up to tomorrow... At 7:30 am. I am nervous. I have a lot to say and I forget things..... Yes I have important stuff saved on this blog. Unlike the rest of the world I do not have a smart phone or any device that connects to the net outside my wifi at home. Thank goodness for my mom! She also has a neurological disorder much like MS and forgets things too but maybe between the two of us we can make sense.

My arms and legs hurt so badly today. I have a heating blanket on my legs right now.. I had planned on trying to clean up the kitchen some today (with MS there is no such thing as planning I have realized). Took one of my few precious pain pills and am waiting for it to work.

Doctor visit, Much Pain

So I realize I have not updated anything for the past few days. Honestly I have started an update a few times but have run out of energy to finish it.

Starting a few days ago my bladder and urinary tract has been on fire 🔥 Having a lot of nauseousness As well cloudy pee etc. etc. classic sign of infection. I know I keep writing about these symptoms but they just won't go away! I have been in bed with a heating blanket much of the past few days. (Btw the heating blanket is AWESOME for my arm and leg and bladder pain, on sale present from my mom)

I have been in severe pain the past few days.. So much that I could not even take care of my snailery. Have not been out of bed much. I decided it would be wise to see my doctor and get another pee test done. (Went to the e.r over this 3 weeks ago and tested negative for infection) I am not crazy, this localized pain is very real!

So visit to My primary care Dr. Snow yesterday with nurse practitioner. Peed in the cup, and it came back negative for typical infection, though it did show levels that indicated a high ammount of inflammation in the UT and bladder so something is going on in there. I mentioned that perhaps since I have been stepping down from prednisone (Prednisone reduces inflammation) that my inflammation has possibly increased? She said she had not thought of that but that could be a likely possibility.

She was still suspicious of infection and decided to prescribe a different antibiotic than the other two I have taken. Also she put in a referral to a Urologist since my case is a strange one and needs specialist help. (Of course it can't be something simple with me) Also going back in a week to report back to doc. She said a referral was put in over 3 weeks ago when I saw the doc last but I never got a phone call... She also mentioned that Dr. Snow put in a referral for wheelchair assistance but I never got a call from them either. Argh.

So! New antibiotic is Cefdinir. This is my 4th round of antibiotics since the 2 week hospital stay. Let's hope it helps! Also hoping for a phone call from urologist soon.

I got samples of Lyrica!! I am Ecstatic about this. Only About ten days worth but I am so sick of being in pain. I mentioned getting them from the manufacturer and she said next visit they will work on helping me get Lyrica somehow.

Need Lyrica

Things are still pretty cruddy.
Pain is steadily getting worse as well as symptoms. Waiting for meds to even out. Any time now!
My damn right eyelid will not stop twitching. The left one joined it last night! The more I do the more my body wears out and starts twitching.

I am going through the manufacturer of Lyrica to try to get it for free since it helped me SO much. Lots of red tape, but getting the process started. I am having to take pain pills again 😔 I don't have a lot left so either Gabapentin better work a miracle or Lyrica has to be affordable. Emotions are so outta whack.

So tired

So so tired today.
My stomach is very upset, took a Zofran hope that helps.

Stepping down today, 35 mg Prednisone to 30 mg. slowly getting there!

I ache. Every single tiny move has a consequence within the next 15 minutes. (pain) Sounds are really bothering me and my limbs are not cooperating. Super spacey today. Do not have tolerance of the outside world.

It is a beautiful day too 🙁

Not Winking at You

Annoyingly day three of my right eyelid twitching at random.

Body pain has not changed.

Life is a surprise

Luna woke me up in the middle of the night and I had to pee...
Suprise! Red pee for me. I just dunno what is up.

Body pain, hot flashes today. Just generally feel yucky.

Pain is increasing, mind is overwhelmed

Lots of body pain the past few days.
Also a lot of mental confusion, speech issues, forgetfulness, and frankly I do not trust myself to do any important task right now. Bladder pain is much much less.

Body pain has increasingly gotten worse, but is it my weaning off of Lyrica to Gabbapentin? Coincidence? Doctors all agree Lyrica is a better neurologicalmpain releiver than Gabbapentin. It is unfortunate that my insurance will not cover it and I am almost out of samples. I am however trying to see if I can get meds through the manufacturer.

Stomach aches are still pretty bad. I just don't feel with it... 🙁

Stomach Ickies

Really bad stomach pain today..
Bad ache and nausea. I realized I have Zofran an anti nausea medication so I took it, some pepto and made some ginger tea. After all of that and some M M it finally eased up after a few hours.

I have started integrating Gabbapentin into my medication to replace Lyrica, my samples are almost gone, insurance does not cover it. Supposed to step up with Gabbapentin.. Gab supposedly is like Lyrica but does not work as well. I know Lyrica has helped a lot with neurological pain, hopefully Gab will continue to help.

Emotion Sickness

What many people on the outside do not realize about Multiple Sclerosis, is that not only does it affect your limbs and physical function, it directly affects your mind and emotions as well. (As if we didn't have enough to deal with!)

It's common to get obsessive to the point of panic about the little things, to get angry or snappy at the ones we love (generally out of frustration) and not directed at anyone in particular but it comes out at the nearest victim.

It's common to have a huge array of emotions even within one hour. This takes a huge toll on the body as a whole, imagine the energy it takes to feel the spectrum of emotions so quickly and whole heartedly. Imagine being terrified and confused as to what is happening to you, as well as terrifying and confusing the people around you!

It's common to break down crying for absolutely no reason or to become overwhelmed by people,sounds,lights, fast movements.

It's common that Any stressful news literally feels like the very end of the world. Like THE end of the world. As in ok I am Fed up with life I guess I will pack a bag and move to Antarctica. Sometimes these insanely intense feelings stem from something so logically insignificant as something not getting done around the house.....

Keep in mind that stress is killer... You stress about something be prepared to not be able to walk or see, for me things get tingly and numb as well as very painful. Makes you think... What kind of twisted disease is this?

I am writing this because I am pretty down today.
Down has it's own array of emotions, and they are intensified. Hopelessness takes on a new meaning and you realize just how cruel your own mind can be.

MS sucks. It invades your body, it invades your mind.

Sunday-Mon

Sunday was a  much better day.

I had gotten lots of sleep and was finally clear-headed. But I still had the question... why was I STILL having bladder and uti pain if I have no infection??? The pain had lessened some, but it was still very much lingering and aching. I just do not know.... maybe the antibiotics are still working their way through my body? Usually with an infection like this the pain goes away 90 percent the first day you take the antibiotics. Not so in this case at all.

I will have to talk to Primary Doc about it I suppose.

During this whole fiasco I was pretty weak and not walking well... just as a note to self. Still today, Monday.. I am not moving around too well. Pain, Dizziness, Weakness (And yes, still have bladder pain with occasional nausea)

Sleep, Pain and DPU

Saturday Aug. 20th

James and I both fell asleep as soon as we got home from the Hospital around 8 am....

1:00 pm -
Holy hell! Severe knee pain in both legs.. Throbbing shooting aching, awful. I woke up kicking in my sleep. I was thinking to myself... Why my knees? I put my feet on the floor and realized I cannot put pressure on my legs at all, and then I figured it out.

Who just spent 7 hours sitting in one position in a wheelchair? Who has DPU (Delayed Pressure Urticaria) and put pressure on her knees for 7 + hours? Ugh.... I just can't catch a break.

Yep.. SUPER Swollen Hivey knees with really REALY bad pain. DPU and Multiple Sclerosis, When their powers combine!? No.. I do not become Captain Planet. (ha ha my attempt at being funny)

It creates agonizing pain. I did not think about how I Was sitting at the time, and how much pressure I was putting on what and where, I was focusing on trying to get into the damned E.R.

That's it, I'm never leaving my house again.

So...
My Saturday was shot, still a lot of bladder pain making it painful to move, and any pressure on my knees was really awful... put heat on everything, and took a myriad of pain medication and went to sleep for the rest of Saturday, and Saturday night.

Friday Aug 19th.. Trip to the E.R

Friday August 19th
Trip to the E.R

Friday evening my bladder pain which was supposed to be getting better actually got a lot worse. It was a minor annoyance, to "I have to lay in bed with heat on it" to "The pain is making me sick to my stomach and pretty severe" My primary care Doc said to go to the E.R by Saturday if I had no improvement or more pain, as it could very likely be that I have an antibiotic resistant infection that could turn into Sepsis very quick since my immune system is so low and many of the medications mask the symptoms of infection, such as fever. The severe pain was worrisome because I had two seperate shots of strong antibiotics, and also was taking a new stronger antibiotic macro something or another.

Didn't want to go to the hospital but a bodily infection is not something I wanted either.
Went to the Renown E.R around 8 pm Friday evening. It was crazy busy.
All the noises and people were a huge overstimulation to of all my senses. Thankfully I Came prepared with heavy duty earplugs... still, it was all I could do to keep my shit together.

Unfortunately we had to wait in the waiting room for 7 1/2 hours before I could get in to be seen around 3:30 am. The pain was getting really really bad, and making me nauseated... so I did go out to the car to lay flat for a while, while James waited inside in case they called my name. That seemed to help a lot.

Seemed we picked a helluva evening to go to the E.R.... I witnessed at least 20 people walk out and go to St. Mary's hospital due to serious cases being untreated for many hours. I guess there is only so much they can do when rooms are full.

After finally getting in, they took massive amounts of blood, and did a few pee tests. Also gave me some pain meds. Pee tests came back infection free! Which was odd, but I was thankful for it. It seems that the new antibiotic prescribed by my primary Doc was actually doing it's job, and bladder/uti infection was gone. ER doc ordered a Cat Scan of abdomen because of all the pain in the bladder, but it came back clear of any issues. Glad for that! But the pain was still really severe... ER doc didn't know what to tell me other than I was free to go home and keep taking the antibiotics prescribed, and Zofran for nausea.

Doc and Nurses said all signs pointed to something more serious, so it was not a wasted trip... it was a good call that I went. James and I were totally beat... we got home around 8 in the morning and crashed.

Doctor Appointment, Stubborn Infection, and Dispensary

Yesterday I saw my Primary Care Doctor Snow.

Had my checklist ready.... Thankfully I got my letter faxed off disclosing that I basically have a recently diagnosis for Multiple Sclerosis and cannot be employed due to complications. (More or less). I thanked him for the Valium.. Definitely helps me pee. We talked about my recurring UTI/Bladder infection. I would have thought Cipro taken twice for a UTI would have nixed it. Nope, I Have some super strain that is resistant to this particular infection, and my immune system is pretty much 0 right now.

Since I am on Prednisone (weaning myself off slowly) my immune system is really really at risk of infection. I can only wean myself off so slowly or I get hives, anaphylaxis etc. But I did tell him I would try stepping down a little faster. I have an epipen and a giant bottle of benedryl. So I peed in a cup, they took it off to test for infection, and there was definitely a uti happening. Cipro didn't kill it, it needed something else with a little more "oomph". My Doctor had to get creative because I am allergic to Sulpha based antibiotics, but did find a suitable antibiotic as well as giving two strong shots of antibiotics in the butt because things could turn into sepsis very fast if infection did not get controlled.

I was instructed that if I do not feel significantly better by Saturday to go to the E.R and get checked out for Sepsis. Really don't want to do that... but a bodily infection would be bad untreated. Today is Friday, I feel like I did yesterday.. :/

Two meds were takin off my med list, and two were added.

Taken off:
Famotidine (Pepcid and H2 blocker)
Cipro (Antibiotic)

Added:
Pantoprazole - (New Antacid, to protect my stomach from prednisone which can cause ulcers)
Nitrofurantoin Macro (New Antibiotic instead of Cipro)

Note to self:
Whilst we were brainstorming with the doctor as to what to do with me, he mentioned that there IS an alternative to prednisone. Starts with an M meta something maybe? All the doctors I have talked to have told me Prednisone is THE drug for inflammation etc. Even the hospital said prednisone/solumedrol is it. Apparently there IS another drug, it's a bit stronger than prednisone, but is used for people with adverse reactions to prednisone. (That would be me.) However, since it is stronger he didn't want to bombard my already fragile immune system and the mountain of pills that I take already. But for future reference I am putting this here.

My mom took me to one of the local dispensaries after my Doctor appointment.
This one was very nice, recommended by Dr.Jackson. They even gave me a great discount for her referral!
The daytime strain that was highly recommended for muscle tremors and pain they were out of unfortunately, so the next best in the same category was Sequoia Strawberry. Stardust was recommended as a good evening strain, so I got both and some gummy edibles.
 
 I had a long day and my body had sensory overload. I was feeling that strange body vibration again, and it wasn't a good feeling... The strain Stardust is nice! I tried it last night. Stardust is a definite mood lift. It smells skunky and piney, it is a little harsh but I was drinking very spicy ginger tea. Variables. I felt the calm in my muscles that pharmaceuticals just cannot fully relieve. The nervousness in my arms and legs faded away, and at least for a while I could feel some relaxed peace in my body. Moments like those are  precious, for a few seconds I can almost imagine pretending to be "okay" again.