Bloody Hell!!

It's probably my favorite thing that Ron Weasley says in Harry Potter films. He says it repeatedly, and with such passion!

I just re-read my last two posts and wow, what DOWNERS!!!

My life really is not as dismal as the portrait of it would have you believe. I love my job, I mean, I get to deliver babies. I love my new friends in my new town. I love my family, and my kids are so great.

I'm a little obsessed with my health right now. I ignored symptoms for years, and now I think about it.....a lot.

So, had vein procedure done on Friday morning. Yeah, that hurt, surprisingly, since they told me it was no big deal and wouldn't hurt in the least. Lots of bruising, which surprised my doctor. Hello! you poked me like a pin cushion, what did you expect?! And then, there are the oh so attractive compression stockings which take an act of GOD to get over my ankle and up my thigh. They also cause this nice indentation where they cut off the circulation at the top, and cause a really attractive butt flap. No really, you should invest. Maybe I need to consider doing more squats? I may, or may not have screamed some profanities at them, and told them if they told me "last poke" one more time I would punch one of them in the face. Then, there's the 4x4in. numb square where they punctured my leg to place the cautery wire. They promise it will go away.....eventually.

My new dose of Gabapentin has decreased the burning in my feet...YAY! Unfortunately, I grew a new symptom this week, now I get goosebumps in patches on my skin in random places all over, and  more so when I'm working out. So it's this paradoxical sensation of feeling goosebumps spring up when you are pouring sweat from an intense work-out.

I decided to research my interesting new sensation, and it crops up from the autonomic nervous system. Basically, the gist of it is there are probably lesions in my spine. I can make it happen too. Tonight I ran three fingers up my legs, and a trail of gooseflesh followed them like ducklings following mother duck. SO WEIRD, and kinda cool, in a mad scientist, guinea pig kind of way.

I should really consider sleep

Jenn

Denial is wonderful isn't it? Last night seemed like a hot tubbing kind of night. DH turned the heat up on our relaxing backyard luxury, and after dinner the littles, DH and I piled in....

Ten minutes into it, I feel like I've been drugged I'm so tired, and the dizziness slams full force, and the feet burn more, and my chest hurts worse.

I finally give in and come into the house. I lay on the bed because I feel too weak to do anything else and realize my legs are tremoring. 

I feel so violated by these diseases. MS has come to my body uninvited, and violates me day after day after day. The tiny joys of life that I never thought anything about are being stripped from me. 

Pity party much? Why yes, thank you, I'll take a Olympic swimming pool size of pity for myself thank you. And, because I'm on call I can't take my full dose of Gabapentin because it's sedating. So, I get to stay up with my burning feet and chest pain all night long. I layed in bed wishing to get called in so I wouldn't be lying in bed awake all night. Being busy at a birth would distract me from all of this.

After twenty minutes or so of this I finally succumbed,  it's time to do what I like to do least in life, which, is ask for help. DH, will you rub my feet? Rubbing them doesn't actually do anything that changes the burning or aching, but it distracts from the burning and aching. So, he rubbed my feet for about 15 minutes. Then, I called my littles in and asked them if they would rub my feet, and they did, and rubbed lotion on them, and put socks on them. They filled up my water bottle, and just loved their mama who is feeling like a failure, and impotent.

How have I been SO blessed?

Feel the burn...

Found out today that I was taking double the dose of Gabapentin that my Neury wanted me to, and it still wasn't doing the trick.

So, medication numero 7 has just been added to my daily routine. I was feeling so disheartened by my symptoms. Dizziness, loss of coordination, burning and pain. And, knowing I couldn't see my Neury for FIVE MONTHS I was feeling dejected and defeated.

After speaking with a friend today I decided that I deserved better care, and needed an expert in Multiple Sclerosis treating me. So I opened my laptop this afternoon, and within a couple of minutes found Dr. Charles Smith, a nationally renowned expert in MS at Scripps in San Diego, CA. And, he will see me in two weeks, not five months!

Truly in the fog and frustration of this whole experience I feel so blessed right now. I must recognize the nudge I felt in Dr. Smith's direction. Sub-optimal care is not acceptable when you are dealing with a diagnosis like this, and now, I won't only get ok care, I will receive expert care.

So, two more weeks of burning and pain in my feet. Two more weeks of dizziness, and clumsiness at the gym. Two more weeks of chest and hip pain. He may not be able to solve it, but he will have a plan for my care which is so much more than I have now.

I also found out there is a name for the crazy jerky movements I make when I'm asleep. I found it in a book from the library about MS. The movements are called Periodic Limb Movement Disorder, they only happen during sleep, and you usually don't know you are doing it, but partners usually tell you about it. It described in perfection what has been happening. DH woke me last night and said did you notice that. Notice what? So, as I was falling back to sleep, I tried to pay attention, and sure enough as I started to fall back to sleep, my arm jerked, my leg jerked, and my foot jerked. I guess I'm a real JERK!! Snort, snort....

The long and short of it, learned something new today, and YAY ME, won the Specialist Provider lottery. 

Jenn

Little things like Lupus....

Love House, MD!

I just re-read my last entry which, was about one year ago. I read the line about kids killing brain cells, and sighed very, very, deeply. My memory loss, difficulty concentrating etc. has a much darker side to it.

Forgive the following rant, however, I plan to use this blog as a way to process and journal about this journey I've embarked on. Not all of my posts will be as depressing as this one......and I hope you will come back and follow me on this journey.

After five years of being sedentary after our son TJ was born, and died, trying to survive losing TJ, starting grad school, having 3 other pregnancies, working in and out of the home, having a spouse with what was thought to be terminal cancer, a child with Epilepsy, a child with Tourette's, and my youngest having multiple seizures last year; I decided last July to go back to the gym. I missed the old health conscious me, that loved exercise, and took care of herself. And, well to paraphrase my old chiropractor, when I decide to do something I jump in with both feet. His version was a little more colorful.

So, back to the gym I went. Immediately I noticed that 5-10 minutes after starting my workout, my feet would go numb. This happened 5 times or so, and I thought....CRAP! my back is messed up. I better go to a spinal specialist. 

Around the same time my chest started hurting after my workouts, and then just kind of hurt all the time. Since I was getting healthy I decided to go see my doc and check out some weird cramping in my feet, and some swollen lymph nodes in my neck. I figured the cramping, (which was the muscles in my feet getting stuck whenever I arched my feet) was nothing more than an electrolyte imbalance, and the nodes had been there for at least five years, and I wasn't dead yet, so they couldn't be anything serious.....right?

He ordered a neck US and found a goiter. Not only is that a fun word, a goiter meant that I had thyroid disease. And because they found swollen lymph nodes in several places, a bunch of bloodwork was done and I was eventually diagnosed with Lupus.

So I got to adopt a Rheumatologist into my life (who I love, love, love). Almost immediately I had a horrible flare. Crushing chest pain, extreme fatigue, severe joint pain, and sores in my mouth. A provider, (not my rheumy) placed me on a high dose of Prednisone, and after a few days, I could barely stand, or walk, it was almost impossible to raise my arms, I had to sit on a chair to put my makeup on, and would have to take breaks every 30 seconds or so, I could not brush my hair, and was blessed with cystic acne. I had tremors, and pretty much thought I would die, and kinda wanted to. Prednisone IS THE DEVIL. My rheumatologist agrees and recently promised to not put me on it unless it would keep me from dying. She hates it too! YAY Dr. K!

Through added testing I found out that I also have Raynaud's Syndrome (Ray - NOSE), and Antiphospholipid Syndrome. All autoimmune. Basically autoimmune begets autoimmune, so whichever one of these came first decided to have little autoimmune babies inside of me, and it feels like they are multiplying like rabbits. 

Because the numb, tingly feet weren't getting better, because of chest pain, and because my kidney labs were wacky, I also adopted a cardiologist, neurologist, and nephrologist, all AWESOME, in exception of the latter, didn't love him. 

Today I completed all of my cardiology testing, including ultrasounds, and stress testing. I've also been completing nerve conduction studies with my neurologist. I won't know if my heart is broken for a couple more weeks. They didn't see anything that made them send me right to the hospital, so that's good right?

What I found out from my neurologist is that I don't have peripheral neuropathy....YAY! No, instead it looks like I also have Multiple Sclerosis. So, next up is a brain MRI to look for the shiny white plaques that MS poops onto your brain when it melts the myelin sheath around your nerves. MS is rude like that.

As I've tried to begin processing this I've remembered back to symptoms that I've had and ignored for years like my inability to be in a hot bath without becoming short of breath and feeling very weak, a classic MS-y symptom. Doesn't everyone feel like that??? Yes I thought it was odd but did I mention I had two kids during graduate school. So, it got ignored. Plus, nerves were already dying I'm sure, because who ignores crap like that?

Around the same time as the numb feet started, I had severe muscle spasms in my feet. What does this look like? When I arch my feet, my muscles get stuck in that position, and it is PAINFUL.

Also, when I bend my hips for more than a few minutes, I have to use my hands to put my legs back into a normal position because my hips become severely stiff and very painful. 

When I get warmed up at the gym, I lose my coordination ability in my upper legs, and basically hang on to the elliptical for dear life because all of a sudden my thighs are clumsy and don't work.

DH just told me I jerk in my sleep. That and the feet getting stuck is called spasticity. Remember when your mom said to stop doing that because you might get stuck like that forever.....all this time I thought she was messing with me. I don't ever arch my feet anymore, except tonight because I wondered if that was still an issue for me. Yep, had to grab my piggies and return them to their designated positions on my feet.

My hands have been numb and tingly for years,  and I thought it was Carpal Tunnel. Nope, all part of what is becoming undeniably Multiple Sclerosis.

My nerve cells really are dying. I have to write EVERYTHING down or I forget it. So, when I forget things, it's not because I'm an airhead, or a flake, or indifferent. 

Today, as I sat in clinic contemplating my reality, and how silly little symptoms like my feet getting stuck in weird positions, and almost fainting in the shower, were ignored, I wanted to cry. Like, cry, and cry, and cry (otherwise known in my family as "THE UGLY CRY"). Where was my head, and why did I ignore these things?

I also found out that pregnancy holds off MS progression, and since I've been pregnant FOREVER, it kept this disease at bay. See what I get for having a hysterectomy?

When I was at the gym tonight, and my legs turned to jello yet again, I got ANGRY. Angry at this body that is betraying me. And the more determined I became to make them work, the faster I tried to go, the clumsier and weaker they felt. So like a disciplined child, I slowed back to a pace that felt safe, and recognized MS's power again.

I spent 14 years off and on in school to be able to get licensed, to finally fulfill a life-long dream; and now I have to wonder exactly how short my career will be cut by this betrayal by my body.

I have always been outgoing, spontaneous, vivacious. Will my kids know me as that person? How much of me will these diseases steal from me and my family? Will my youngest children's only memories be of a sick, disabled women in a wheelchair, who has angry outbursts, and slurs her words?

Uplifting isn't it? Lupus was something I studied in nursing school, learning just enough about it to pass boards. Same with Multiple Sclerosis. They were these mysterious diseases that didn't really hold my interest. Now they are my intimate daily partners. When will I have to start the toxic poisons that will delay the progression of this disease, but leave in their wake a weak, sick shell of a person?

So much has changed since my last post. This came into my life like a thief in the night. 

In six months I've been placed on six different medications. I went on strike last week, like a tantruming two year old and said "I'm not taking these STUPID, STUPID, STUPID meds", and then Lupus taught me better, or MS, one of them flexed their autoimmune muscles at me. About two days into my strike, my chest started to hurt, and my bone pain intensified, and so for the 2nd or 3rd time my symptoms pushed me back down onto my knees. So, I'm taking my damn medications! I'm doubling my Gabapentin today because my treacherous numb feet now burn so bad at night that it keeps me from sleep.

How many other autoimmune's will I get? How will they wield their power over my body?

So, what is a Lupie, MS-y girl to do to survive?  I turn to GOD, with renewed vigor, and I beg as only a desperate child can to guide me down this path with my gratitude in tact. That HE will help me to be gracious, and that my tantrums won't be too long-lived. That HE will help me see the good, and that the bad won't be so bad, and if/when it is, I'll learn from it, and grow from it, and become more like HIM because of it.

Hopefully it won't be another year until my next post, but if it is I really, really hope that the changes aren't as significant as these were, and that if they are, it will be for the better.

Jenn