Nerve Pain, MS and Parenting

They don’t tell you to prepare for the unbearable nerve pain that comes with MS. Apparently it is not one of the “more common” side effects of the disease so count yourself as lucky if you do not get this.

I take Amitriptyline for my dysesthesias, it is an “off label” use for this issue but it has been working for me, more or less. Though the last few days I have had increasing nerve pain that started in my legs only at night and progressively moved to my full body and all day. Yesterday was the worst, it got so bad I was ready to go to the emergency room, and I HATE emergency rooms. I have spent too much of my life in hospitals to go there unless it’s the last resort.

It felt like someone was stabbing every part of my body with little needles, and not just my skin (that’s what happens when my core body temp increases to much, another fun thing with MS) all of my organs too. It is hard to properly describe what it feels like to have your entire body being pricked with needles and how you can feel it in your organs, but it is not hard to explain that this pain changed my level of patience with people, my pets and my kids.

Driving home with my children, I was in so much pain my body was moving in response. My oldest told my husband later that it looked like I was trying to use the force on cars in front of us with my hands while they were still on the steering wheel. I felt my upper body contorting to try and relieve the discomfort, it did not work. The normal bickering of brothers drove me mad and when children tried to hug me goodnight I cringed and had to tell them to stop. My husband held my hand as long as I could stand it while we were watching a show and I finally had to pull away because the sweet, loving gesture of rubbing his thumb on the top of my hand was causing me pain.

I ended up taking an extra pill of Amitriptyline, I normally take 2 but the doctor said I could go up to 3 so I knew that was ok. I also took a Vicodin that I had for my migraines and back/hip pain. Then I put ice packs on my body so I could numb the sensation a bit and finally got to sleep. This morning I am in less pain so I will be increasing my dose temporarily and speaking with my doctor but I have staved off another trip to the ER for today.

It’s hard to explain to children why you are extra snappy on certain days and what the sensation you experience feels like so they can understand. It is also heartbreaking for me to have to tell my kids they can’t touch me because it causes me pain.

 

Vaccinations and the Immune Compromised Public

New York County just banned children in public places if they are not vaccinated for the Measles. Holy cow, please do not start freaking out as I have not even said anything yet.

I am 100% for people making their own choices for their family and their kids, that being said, I am also for not becoming deathly ill because of those people’s choices. I made a comment on Facebook about how I am glad this is the case because people who have immune issues should not have to be subjected to diseases that there are vaccines for when they are going about their daily business.

In case you are unaware, when your immune system is compromised that means even if you were vaccinated for the disease it no longer matters, you are at risk because your immune system does not work the way it is supposed to.

It got so many comments, one person in particular told me I should stay inside my house forever. (Thanks for that lady, I wasn’t starting a fight I was just sharing my personal opinion.) Not once did I name call a person, call them stupid or an idiot or say that their opinion was not valid. Other people did, some were very rude actually and I get that you can be passionate about a subject but if you follow my blog than you know that I want to be a better example for my kids on how we should treat people and I do try to live what I am preaching to my kids.

Another person pointed out, rightly, that I did not choose to have the immune system I am currently blessed with, and the chemo medication I take to keep it from eating my brain. (I am paraphrasing here because I didn’t share why my immune system was compromised or that I take chemo medication.)

MS shows up differently for each person who has it, different medications work for different people and the severity of symptoms ranges widely. For me, MS shows up like a giant a-hole villain who is getting paid to make my life a living nightmare. There are days when I get questioned about why I have a service dog because I am walking normal, there are other days where I probably look like a total drunk and it’s obvious that I could not stand upright without him.

Now I think kids should get vaccinations, I am okay with whatever that looks like; the standard schedule, a longer schedule whichever. A kid just spent 2 months in the hospital for treatment of Tetanus for crying out loud, and I know that there are still people who believe these shots are dangerous but science says that is false, also the kid with tetanus cost $800,000 to cure. The shot is free with insurance!

Now if you are a parent who doesn’t want your child vaccinated, fine, please home school them and keep them in your house, because I just realized it’s your choice to make and people with crap immune systems should not have to worry more or become shut-ins because you don’t want to vaccinate your child.

We as people and/or parents, make choices every day, please be mindful of the entire human population when making choices. I vaccinate my dogs so they don’t get sick, my kids because I love them and want them to be as healthy as they can, myself so I don’t die of something stupid. Also, I don’t drive into oncoming traffic putting other people’s lives at risk because I think it’s a better way to drive.

 

Multiple Sclerosis and Germ Season

One of the worst things about MS treatment is the fact that it has to shut down your immune system to keep your body from attacking the brain.

Due to treatments I have had an uncountable amount of colds that turned to sinus infections since 2014. I had sinus surgery in 2016, hoping that fixing my double deviated septum and small sinus pathways would reduce the frequency of sinus infections from the inflammation caused by colds. It did not, it did however make it so that I was unaware when I had a sinus infection until very far in because my face didn’t start to throb as soon as it had before as a result of all the extra space I had made.

Recently I got sick suddenly and after 3 days of high fever I finally decided to go to the doctor. By the day I went in my fever was up to 102.3 and I was seeing things. Looking back I probably should have went to the ER but I HATE the ER. I spend enough time there already and I was afraid if I went to the ER they would admit me.

Even after taking Tylenol I still had a fever when I arrived at the doctor. They did a Flu test, thinking that was a logical assumption with my comprised immune system and my symptoms. Though I do get the flu shot every year since 2006. 12 minutes later, it was not the flu. It was determined I had “communal pneumonia”.

Even after taking 2 types of antibiotics 3 times a day for 10 days I still felt terrible. My lungs no longer felt like sandpaper when I coughed but my fatigue was worse, the cough and congestion still there. Pain breathing anytime I exerted any type of effort.

Three weeks later and I am still recovering. That is the price of treating MS, everything takes longer to heal. It’s not something you can avoid when you have kids either, they have to go to school and they are constantly around other kids who may or may not be sick. They come home and you cannot decontaminate them fast enough or well enough to catch every possible thing.

So during winter I dread every sniffle and cough, is this allergies or has my child been given some terrible germ that will eventually wreak havoc on my already terrible immune system.

Hang in there, but if you have any good tips please let me know because I am so tired of getting sick!