It’s Never Lupus…

I guess I’m changing the name of the blog from BSing through MS to, what the actual fuck, you can have lupus and MS?!?

So, I’ve been diagnosed with lupus.

The referral to see the specialist to get treatment was sent and I got the first available appointment. For February 19th 2020.

Ive known for a bit now and it’s partially why I didn’t continue the blog because… Honestly it makes me feel like a whiny bitch to talk about my health, even though I know I’m not whining about it.

I still haven’t really felt like doing much research on Lupus. Other than what I had learned from watching House MD years ago, I’m pretty clueless.

There isn’t an update on the MS treatments yet either. I had to cancel my doctor’s appointment for the pre-screening because I was just too tired to get up.

And lately I’ve been having anxietyless anxiety attacks? It just suddenly feels like I’m disassociating, and it’s probably the most terrifying feeling I’ve felt so far.

I don’t know if my anxiety is getting worse because of the stress or if it is even anxiety. I’ve read a lot of MS patients have felt similar sensations.

None the less. I’m lost. I feel so broken and useless. I’m doing my best to stay positive but damn.

ANOTHER DIAGNOSIS.

On the bright side, I have been keeping up with my makeup and such. I have been doing the self care I promised myself I’d do, and I’ve gained back about 10 lbs so far.

I also got a Wacom drawing tablet so I can hopefully get back into art without having to worry about the cost of paints… Because… Digital.

Now I just have to learn how to use it…

More to come soon.

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Been a while…

Well I let life get the best of me. And writing makes things too real sometimes. But I’ve reached the point where I feel like I need to.

*This post will include a lot of NON-MS crap about my life*

First things first, I left my dead weight. I am a single woman. It sucks. But, I know I did the right thing, when he said to me “No one else could love you with your MS bullshit”.

Fuck you bro. I am human and, of course, made my own mistakes in our relationship. Who doesn’t. But NEVER my our relationship to be my diseases issues.

That all happened shortly after my last entry, and then I was given my FIRST EVER round of prednisone.

I’ve since learned a lot of people with MS get their first round of steroids shortly after they’re suspended of having MS as… If your having symptoms to seek help, youre in a flare up. Steroids end the flare-up. My doctor I’ve been seeing for 9 months now never thought to prescribe them before…

So, I couldn’t handle the first steroid round. I took them as prescribed and ended up being so nauseous and sick, I lost 14 lbs in the four days I was able to stay on them.

Not a big girl to begin with so… I was down to 95. I was scared for the first time in my life about my weight. I struggle to keep it as it is, but when sickness gets me and I lose a lot, it’s a BATTLE to regain it.

I emailed my doctor and stopped taking it. They said it was fine and we’d discuss at the next appointment

Now the next appointment was to cover how the disease modifier was working for me. I’d been suggested to take copaxone.

I had the 2% reaction of rabid heart rate and cold chills. It was probably the scariest thing I’ve ever need through.

I’ve never been the one to think, I should go to the doctor, until it’s like… Death.

I almost called an ambulance. I was terrified.

So now I’ve gone back to the doctor, and we have hopefully found another route for the steroids.

Now I’m waiting for an appointment next week for the prescreening appointment to start Gelinya.

Now for more basic life crap.

As a single woman, I’ve become a no income house again. Which is just stress on toast.

I’ve been told not to work for a year to continue on the disability thing. I hate the sitting and waiting for someone to tell me I’m broken.

Ive also noticed my depth perception is getting so much worse. I didn’t realize how bad when it was just me running into walls and nonsense. Then yesterday I was trying to help my son wipe in the bathroom, and slammed his head into the counter top.

Aside from the instant, WHAT THE FUCK DID I JUST DO TO MY BABY, I was so lost for a moment. I heard his head hit but my brain was still like, hit what? There’s nothing there.

It took me too long to grasp the counter, that had been there for my whole life, was still there and I’d just helped my son smack his head on the side. Luckily he’s ok, but… Omg talk about mom of the year.

I am doing my best to deal with my stress and hopefully not injure my kids anymore. It’s been a rough few months but hopefully I can get on top of my shit.

Leaving Me hanging

I feel like this illness is a never ending awkward joke without a punchline.

So I had my follow up after all the scans and tests and bullshit. First off, I opted to see a doctor sooner than later, so I saw the doctors assistant. He’s a doctor. Secondly, I wish they wouldn’t call him that, it makes me feel like I’m seeing a secretary but whatever.

Because he isn’t the big boss doctor, he wasn’t comfortable talking about the form of MS I have. He also said they usually like to wait several years before trying to definitively decide the type.

Whatever.

The conclusion was that my scans and spinal tests both show positive signs of MS. He explained it as either one test gives them a like, 75% confidence in saying MS but the two together is a sure thing.

So, then he asks about symptoms and symptom management plans. Here is where I differ from many.

I dont want to treat my symptoms now. They’re definitely not comfortable. If there was a safe way to really effectively treat the fatigue short of meth, I’d use that one.

But all the other things are manageable, so taking 15 meds daily seems counter productive.

Now, the SUPER fun part.

When we all started this process they did a million blood tests to rule EVERYTHING out. So apparently my first test was in an almost positive range, and my second was in a, hey go to this other doctor range.

So now after looking at all the other test results, my symptoms, and all the other medical junk, my neurologist thinks I may have Lupus also.

I think I’ve mentioned my doctor had already sent out a referral to the R doctor I can’t pronounce. For whatever reason the two doctors are having issues talking to each other so that hasn’t happened yet.

So life is like, go to the doctor, get the word on YES it is 100% MS, but here’s a new cliff hanger for ya BISHHHH.

BUT… I did some self care stuff I totally couldn’t afford and I have been doing better with my makeup goals. So that is a good point.

I did a look for World MS day

And a look for Pride Month 🌈(pardon my RBF)

New goals coming soon as I need to manage my symptoms via LIFESTYLE CHANGES. I hate change. I don’t like this. But I have to try right?

New Me, who dis?

There aren’t words in the human language that could ever describe the feeling of losing your mind to Multiple Sclerosis. But I’m going to do my best. I’ve also noticed signs of a new flare up starting so, I’ll probably jump around a lot this post.

Two years ago, I was a completely different person. I was vivacious and perky. I had my spouts of depression and anxiety but they were managed. But over all I was a happy woman.

I loved to go outside and play with my kids. I loved to spend hours in the kitchen or doing my makeup. And I loved to write.

Writing those out today, fills me with a rage and sadness I can’t even comprehend. Since my symptoms started a year ago, I have fallen into a deep dark place.

The sun and heat now makes me exhausted within minutes of being in it. My muscle spasms and weakness make the idea of running and playing seem impossible. The times I’ve tried to run with my kids in the last year, I ended up needing a full two days of recovery time.

Cooking has become a frustration; between needing to stand up for an hour or more and having to remember basic things, I just can’t. I was never a gourmet chef mind you, but I had several recipes memorized that have completed been removed from my brain. The worst part of cooking now is the cognitive troubles.

My sharp wittedness is so gone. To do a basic task I have to chant the instructions to myself and even then I will forget or skip a step.

My favorite kitchen fuck up so far has been the Mac n cheese. Yea, boxed Mac and cheese. So simple. I walked over to my sink to drain the noodles, looked at the colander, and poured all the noodles in the other side of the sink, into the disposal, and walked away… Because they were draining.

I served the rest of the meal before I noticed.

Since my diagnosis started with a hemifacial spasm, my love for make up took the first hit. Once my face calmed down, my hands took over. I can still do the basics and look like a 2000s teen, but my motor functions don’t allow me to do the beautiful creations I’d grown to love.

Lastly, writing. This includes more than just writing really. Language. I should just say I can’t communicate well anymore.

I forget words, and when I say that I don’t mean how everyone does. I mean words completely disappear from my vocabulary.

I have an extremely difficult time remembering the point in a conversation. And if I do forget it, it never comes back. I can be told everything I had just said and it will be like new information to me.

And then there’s the anxiety. I had anxiety before, but now it’s a whole new beast. My brain lies to me so much I can’t know what’s actually a legit feeling or something my MS is creating.

Jealousy. Anger. Fear. Out of no where I’ll be overwhelmed with a feeling my BF is angry with me. No reason for it, I’m just convinced. I spend a lot of my day self evaluating conversations with friends and family, to remind myself, THEY AREN’T MAD AT ME.

The me I am today can barely get out of bed. By 6 pm I’m ready for bed and could sleep till 8 am. I miss the old me so much.

NOW that I’ve aired all that out…

I want to find the newest version of me. Which is why I started this blog thing. To force me to write, even if it’s just bad writing.

I’m out of bed today, though I’m still in my PJs. I haven’t taken my boys outside but we’ve been playing on the living room floor. We’re calling it progress.

There is an old me, a diagnosis me and now I need to find the Multiple Sclerosis me.

The last year has made me tired, and depressed. But I’m so tired now that I’m tired of living like this.

On Friday when I finally get my medical plan in order with my doctor, I’ll going to start my new life.

This is the obituary for the old Me. Next post will be a birth announcement. Stay tuned.

My Diagnosis Story (part 1)

Ok so I’m going to attempt to remember dates as best I can, but my brain is broken so IMMA TRY.

Ok. In June of 2018 I had my first MAJOR symptom. I woke up one Saturday morning and was almost completely deaf in my left ear. I had fairly severe topical numbness and what I now call the “fluorescent light hum” in my right leg. It feels exactly like a florescent bulb sounds.

You don’t know it till you feel it.

I went to the local ER and they would only speak to me about my deafness. The rest I needed to tell a general physician that I couldn’t afford to go see without insurance.

After a quick exam they decided that, despite not being able to see any fluid on my ear drum, that that was still fluid somewhere in there. I was told to get some behind the counter Sudafed and a nasal spray.

Seems like a bullshit diagnosis but, I’m not a doctor.

A week went by with very little change, so I went to a different ER. They said it was probably the fluid, also ignored my leg and now hand numbness, and switched me to prescription antihistamines and steroids.

Another week goes by, and the steroids make me horribly anxious and moody. And when I say that I mean, full comedy sketch pregnant woman, MOODY.

That Saturday I woke up with a twitch in the left side of my face. By the next morning it had gone from a normal, “eat a banana” twitch across my cheek bone, to every muscle in the left side of my face twitching independently, completely out of unison.

It was maddening.

I went back to the ER, and they once again ignored ALL symptoms except my now only slight(but we believe I also had gotten used to it at this point) deafness, and the hemifacial spasm.

They decided the facial spasm was caused by the build up of fluids they still couldn’t see in my sinuses. Because I complained of side effects on the steroids they didnt have me go back to those, but instead asked me to get Benadryl and Flonase.

After a month of follow up calls with nurses and them cheering me on to buy everything target has ever stocked in the cold and allergy isle, I decided I needed to go somewhere else.

I went to a completely different hospital, owned by a different parent company. FINALLY.

They ordered an MRI and sent a referral to their MS clinic and Neurologist clinic.

Here is where shit gets just… Excellent. Up until this point I have been self pay. I have gone into debt, borrowed money and started hilariously low payment plans to cover the ER to this point.

To be seen at the new doctor I MUST BE INSURED.

I don’t have lots of money so that’s not like a thing I can easily solve. At the time I was making just enough to not qualify for Medicaid but not enough to get assistance in the market place.

I fell in a crack.

So I got a HUGE loan from my dad and bought 6 months of private insurance, not during open enrollment so I was basically paying triple.

Go get the MRI. Which is a weird experience. It is where dubstep was born. For whatever reason mine was a mobile MRI, aka in an RV, so it was like 115degrees and smelled like (fake name) Pam, the tech that had to sit in that sauna for 9 hours a day.

It wasn’t bad. They also shove metal free “noise cancelling” headphones in the face cage with you, so you can enjoy the MRI dubstep remix of the America’s top 40 station.

So after the super fun body tube scan, I get the call for my follow up, but there’s a problem. THERE’S ALWAYS A PROBLEM.

My insurance is refusing to pay anything because they have decided my condition which is undiagnosed and unknown is preexisting. But luckily the doctor will still see me, I have insurance so they’re covered but I’ll basically be self pay.

…on top on the loan… For the insurance… That I just got…

ANYWAY.

I go in for my follow up and get a weirdly positive vibe. The doctor had a fanny pack of visuals and shit to explain Multiple Sclerosis to me in a way I hadn’t yet been able to understand.

Then they confirmed the presence of two lesions on my cerebellum. I was told it was an average amount for my age, and that combined with my symptoms was enough for him to definitively diagnosis me with MS.

Weirdly, still feeling good. Like a little overwhelmed but was in a weird, “fuck yes, I can take it” place mentally.

The doctor wanted to order another MRI but this time if my cspine, just to make sure there were no lesions there.

Yeaaaaaaaa, another two hours in dubstep tube, but they had a better smelling tech so. It was much nicer.

At this point my facial spasm had finally stopped. It’s now August and the last few months just felt like they hadn’t happened at all. My legs were significantly more numb and I was having more spasms all over.

I went back to the doctor for the final results of all the combined MRIs and blood work. Here’s where I started to get concerned I was at the wrong doctor.

I was told “because there are no spinal lesions, we believe it is something called preMS, and can’t give you MS medications yet”.

I know understand he was dumbing down isolated incident syndrome or whatever the proper term is, but he sounded like an asshole at the time. He did want to start me on capaxone, so he brought in the book of paperwork and told us the options on paying.

HOLY FUCK BALLS.

So they do have payment assistance. The drug companies themselves will help you cover the cost and it’s all cool but, WHY IS IT 500$ AN INJECTION?

And they wanted me to start on a low dose of 3 injections a week. $1500 a week for a self pay, need it now patient. That’s more than the average person salary.

So I decided I didn’t NEED it and waited to do all the hoop jumping to get assistance.

This is now just before Thanksgiving and I’m a weirdly nice person so, I wait until the second week of January to reach back out after not hearing from the office. My doctor’s office had no idea what drug I was talking about.

After annoying a few nurses and receptionist, we figured it all out. They had lost all my paperwork for the drug assistance and accepting the risk of the medication.

My insurance is getting close to running out, and I couldn’t afford another loan for another six months of useless insurance. I decided to just wait until I had worked out my issues with the medicaid office. I haven’t mentioned the ongoings with them to keep stories easily understood, but during this whole process with doctors, this was going on with my Medicaid office.

First, I was denied because I was making too much money. I was a nanny for a low income family for 30$ a day. I barely made it by but it worked.

Then I was denied because my ex husband an I have a very civil healthy relationship and don’t need a government agency involved in our child support agreement. Apparently to get Medicaid I had to. So I went after my ex for legal child support.

No going into that hot mess of a situation, I kind of think you can picture it on your own.

FINALLY, February 20th 2019 I got accepted.

Ran to the phone, made an appointment with a NEW new doctor, and all felt right again. I went in for the first appointment and loved them. They were very attentive to my needs and checking my walking, as the other doctor just talked and didn’t do much examination.

We went over my symptoms, which I’ll post a photo of my list below:

After going over this, they ordered a full MRI, more blood work and a lumbar puncture. I felt more confident I was in good hands, but also the reality of everything really sank in.

This was the first time I’d gone to an appointment alone, so it might have been the first time I was completely honest to my doctor’s about my symptoms. I left with a heavy feeling but still generally in good spirits.

So, the last MRI was tiny compared to this one. I’ve since gotten bored and done entirely too much research and found our my old doctor used a dinosaur compared to the new machine.

This machine was full body length and very very tight fitting. I opted for ear plugs this time, over the top 40s and it was significantly more pleasant. I even almost fell asleep a few times.

This time I was also in a radiology center, so it smelled like hospital and was air conditioned. Thank goddess.

The lumbar happened a few weeks later and was in a hospital. It was a very odd procedure.

I am the see it before it happens, kind of gal, so I googled what to expect. When I got there, this doctor’s office was on a new level. They did x-ray guided lumbar punctures.

I wasn’t laying on my side like I’d thought, I was laying on my stomach. It honestly wasn’t horribly painful. The worst part is the numbing before hand and when they removed the needle, it felt like they hit nerves for my wrists.

That was an odd electric sensation but it wasn’t terrible.

The next few day my back was pretty sore, but not sore enough I didn’t feel capable of trying to clean and do stuff.

DONT BE ME. LAY DOWN LIKE THEY SAY.

That was two weeks ago and I am still recovering. Not relaxing after the lumbar ended me with a horrible pressure headache that only goes away if I lay down, and even then it doesn’t GO AWAY. So do yourself a favor and avoid weeks of bedrest, take the two or three days they suggest.

I’m writing this because I go back this Friday to find out the full detailed results of my MRI and labs. I didn’t want it to be HUGELY long but I suppose this is part one of my diagnosis adventure.

On my first post I shared a screenshot of the email from my doctor so hopefully there won’t be many surprises on Friday.

It’s almost been a year since all this started and I feel like a completely different person.

I would not wish this illness upon anyone, but if you are a warrior like me, keep your chin up. This shit is tough and life makes it harder but we have to keep pushing through.

Until next time.

It’s official

Well I have been tempted to start blogging about my diagnosis process since the begining but it’s honestly been pretty difficult to comprehend it all.

But after a year of fighting doctor’s offices, Medicaid, child support enforcement (yea it’s not got shit to do with anything but… Somehow it does) and private insurance companies, I have an official diagnosis of Multiple Sclerosis.

Holy shit balls.

So like, I’ve known since my first flare up, exactly what it was. And yes, I know that sounds ridiculous, but sometimes people just know. And even thinking I knew, I wasn’t ready to get that email.

Yea, I got the diagnosis in an email. Not a full diagnosis, just.. well here.

Anywho, I go back to my doctor next Friday and I’ll get the full story then.

No idea where this blog is going, but I’ll probably just use this as a journal like place?