Living Life with an Invisible Disease

My Story

IMG_7092.JPG

I was 24 and just had my first baby. We were thrilled to have our perfect little girl home with us. It took us awhile to conceive, and I had a very difficult pregnancy. The day after being sent home from having my daughter, my baby girl was hospitalized again because of an infection in her spinal fluid. Luckily at ten days old, she was able to come home.

I had also lost my Mom unexpectedly during my pregnancy. She passed away in her sleep and it took 16 weeks for the medical examiner to let us know what had happened. I was exhausted, very emotional, and completely drained. I figured it would be while before my body could adjust to the huge events and changes that had taken place in my life the past year, so I wasn’t fazed by not feeling very well.

I remember laying down on the couch, because I was just so, so tired. My daughter had severe acid reflux and didn’t sleep well. I sat up to do something and realized I couldn’t feel the whole right side of my body. I could still move my arm, but I couldn’t feel it. I couldn’t feel the right side of my face or feel my right leg.

I told my husband that something weird is going on. He looked at me and the whole right side of my face was swollen. It was like someone took a marker and drew a line straight down my face and the whole right side was swollen.

Both my husband and I got the feeling that something was not ok, and we needed to go to the doctor. We loaded up, went to an insta-care, and the Dr immediately told us he would not see me there. He wanted to call an ambulance for me. We declined and said my husband could just drive me. I was obviously ok enough, I could walk and talk, I didn’t want to have to have an ambulance bill on top of all the costs of just having a baby in the hospital.

We went to the ER. They immediately got me back and started a battery of tests. I remember the ER Dr coming in with a nurse. He sat down and told me, “You either have a brain tumor, Multiple Sclerosis (MS), or the spots that showed up on your MRI test are something you were just born with. You need to get in to see a neurologist immediately.”

That is not something a new mom wants to hear.

The panic and fear that went through me were consuming. The neurologist got me into his office fairly quickly, he told me, I highly doubt that you have MS, it is in no way a brain tumor (Thank you for the panic that caused ER doc!). He said it is probably just something you were born with, but I want to do a lumbar puncture just to be sure.

The Diagnosis

So, another couple weeks pass and I get the lumbar puncture done. We go in a week or so later to get the results. The neurologist told me, “You do have MS. You actually have way more of the protein markers in your spinal fluid than a normal MS patient would.”

My world literally stopped. I had a new daughter and we wanted to have more children. All I had ever wanted in life was to have a family and to be an awesome mother who could be there to support her children. We wanted to travel and to have all the fun that life should have. All I knew about MS was that is could make you wheelchair bound quickly (which by the way, isn’t 100% true!). How could I travel if I was in a wheelchair? I probably shouldn’t have another baby, why would I want to have another baby if I couldn’t be a good Mom?

I had to start a medicine to slow down the progression quickly. I was put on one that was a shot every other day. I had to inject myself. It was very painful and left big baseball size lumps for weeks after every shot. You had to have a schedule of where you injected, because you needed to rotate and not do it in the same spot. It was $6,000 a month. Luckily, there are programs out there that assist in the copay of these outrageously expensive drugs.

I went into a depression. I felt like my life was pointless. I told my husband over and over to leave me. Go find another woman, one who isn’t damaged goods, to marry, and she will need to be an amazing mom to our daughter. My husband got very upset with me for saying this. He told me that he didn’t just sign up to be together in the good times, but also the hard times. 

It took a long time of getting used to my new normal, knowing that I had MS. It took a while finding a MS drug that worked with my body. I was allergic to one, one made you run a fever every day and made you feel like you had the flu, and one made me put on a bunch of weight. It is not an easy process to go through.

Knowing that at any moment my MS could “relapse” and that I could lose a vital part of my health was terrifying. I have lost some vision, luckily with steroids, it came back, but I have permanent damage to my optic nerve.

I have woken up unable to breathe, because my MS attacked my muscles around my lungs. I have been unable to use my hands, because the spasticity was so bad in them that I couldn’t move them at all.

One of my constants is spasticity in my legs, it hurts so bad to move them and walk a lot of the time. My girls have had to learn to ask if they can sit on my lap, they say, “Can I sit on your lap or do your legs hurt too bad?” 

I developed something called Trigeminal Neuralgia. A very painful thing that causes massive amounts of pain of the nerve that runs through your face.

There have also been struggles with balance. While pregnant with my last daughter, I literally couldn’t walk without holding onto a wall, because I would fall right over. It feels what I imagine being completely drunk would feel like. You have no control over what your body does.

The one thing that can help is going on insanely high doses of steroids for a few days. I have to go to the hospital three days in a row to get the infusions of the high dose steroids. Anyone who has ever had steroids know how fun those can be to take and how crazy they make you feel. But if it gets to the point you need the steroids, then you are usually happy to have those side effects if it will help the symptoms your MS has caused. 

The Takeaway

The super tricky thing with MS is that it is invisible and everyone who has MS has very different symptoms. It is called The Snowflake Disease because the symptoms can vary so much from patient to patient.

If you were to look at me, you wouldn’t have any clue I have MS. All the damage being done to my body is on the inside. My body is literally attacking itself. I have a handicap placard and the looks I get using it sometimes are humiliating. They are judging you based on your outward appearance. Little do they know, that if I walk around Walmart, I will have to be done doing things for the day. It wipes me out. Every fun outing I take with my children costs me something. Lots of times, I will have a fun day out with my children and will be exhausted for at least 3 or 4 days after. I have to be so careful how I spend my energy. I cannot clean the house in one day or even two days. I have to split it out throughout the whole week. It is so hard to try and plan what I am doing according to how tired it will make me. I encourage you to look up the Spoon Theory. It explains very well what it can be like to have a chronic disease and trying to do normal every day things. 

A lot of people out there have invisible diseases. There are so many things out there that people have, that you would not be able to tell from just glancing at them. Next time you see someone park in a handicap spot and they do not appear to need it, take a second to remind yourself that not every disease is visible (I do know there are dishonest people out there who take advantage of their grandmas placard, but still, give them the benefit of the doubt). 

Life with MS

One thing that took me some time to realize, is that I can still have a life and MS. After a lot of prayer and many, many doctor appointments, we decided to go ahead and try for a second baby. Then, we had our third and final baby. I cannot let this disease rule my life. Yes, there are a lot of hard challenges that come with it. I honestly feel pretty crappy 80% of the time. I have learned to just plug forward. I may be in a lot of pain, but there are still diapers that need to be changed, dinner that needs to be cooked, and kids that need lots of love and attention.

My girls have had to come with me to many DR. appointments, which is no easy task. They have had to see their mommy give herself many shots and have had to see her hooked up too many IV poles. But I think that that has made them be kinder and more compassionate to others. They know that life can be a challenge and that every person has their struggles, whether it be physically or emotionally.

My house is not ever 100% clean. We eat out at least once a week. But, we have each other and nothing is better than having a close family that is always there for one another. I always know that my husband will be here for me. My children know that Mom and Dad will always be here to support them. I think that so far, their little lives have been good. They are happy little girls, who love life and love to try new things and love to learn. 

Life is no easy thing. It can change in an instant for anyone. Some one you love can pass, you could lose your job, or you could be diagnosed with something serious. It takes everything we have to get through life. We all need to be here to support one another and to love and uplift one another. You can never tell what someone is going through. If you do have a hard situation come up, remember, that it isn’t going to be the end of you. You can get through it. It won’t be easy, it will take time, but you can figure out how to get through it. Days that seem to last for weeks, will end eventually. You will be able to look back and think, I made it through this. I conquered this. Hopefully, you can say, I have learned a lot in this experience. Some things will be things that will last your whole life, like my MS, but some things will be brief. Life will go on. I encourage you to look for all the good in it. Keep plugging along. Keep looking for the good in your life. Keep looking for the beauty that exists. I promise you that it is there, it is just harder to find sometimes. 

-Ashlee

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s