I HATE my body. A Rant.

I hate my body. Right now I am getting to the point where I just want to end it all because my body will never keep up with my mind. I’m sitting in my bedroom alone while my husband steam cleans the carpets. It was my job to help with the kids and getting toys out of the way.

So first thing this morning when he went to get the steam rental and breakfast, dumb Lorna decides to vacuum. Then when the vacuum plugged, I got down on the floor, using vacuum as cane, and opened it up. I spent many minutes hunched over the vacuum cleaning out the c.log. (This by the way was baby bottle nipple and tissue. How our vacuum sucked up a baby bottle nipple is beyond me. I’m suspecting foul nipple play from the children. You know one of them thought it would be fun to see if they could suck it up with the hose.)

Foul nipples aside, I finished clearing the clog and went back to standing and vacuuming my bedroom. If there is one room in the house I like to be at least partially put together it is my bedroom. For Mark it is his kitchen. I say “his” kitchen because if it were mine we’d have to give it a name suitable to my MS type of cooking like “The Fire Pit” or “The Lost Potatoes.”

So I was vacuuming. Then I got a stitch n my side. I figured it was 1. Exercise with the vacuum when I am still recovering from running the wine booth for MS MOMS at the renaissance faire last weekend, or 2. It’s because I have an empty stomach and sometimes that can give pain.I stopped cleaning and do what Good Lorna does. She lay face down on the bed and took deep breaths waiting for the side pain to go away. It worsened. Soon I could no longer roll over, nor lift up to my knees. Mark was not home yet and the kids were beginning to act up.Panic began to set in. How could I care for the children when I was now in so much pain upon moving, I couldn’t sit up? Aidan came toddling in just as I heard what IO thought was the front door and Mark.

“Mommy’s hurt. Go get Daddy.” He responded instantly running off to get this father. He came back with no Mark.“Daddy not here.”
“Check the garage.”
“Otay!” Off he ran. At this point I was wondering why this pain was not subsiding and why when I tried to roll or sit up the pain spread from my side into my back and belly. Aidan came back in. “Daddy not here.” I took a deep sigh which I hoped would release the tension and therefore the pain. It hurt to breathe. Now I’m panting and getting close to tears. “I take care of you.”Aidan says next to me. I cry and nod.

He pounces on my back. I scream. I cursed and in my best impression of a werewolf in severe pain I tried NOT to bite my son, and then cried some more. It was decision time. Do I call 911 and go to the hospital? It could be something serious. I not only have secondary progressive multiple sclerosis but I am also recovering from taking an immune suppressant (methotrexate) that did so well I kept catching bug after bug after bug. Maybe I have another kidney infection that has gone bad. Maybe I truly hurt something inside.

But then, what if I call, sit in the ER for 8 hours to be told I am sore from coughing or vacuuming. I hated being treated like a hypochondriac or being sent home with “it’s your MS.” I would wait.And wait.When Mark came home with donuts and a steam cleaner, I was lying face down on the bed crying and hyperventilating from pain and panic. Mark was very gentle in asking what was wrong and there was so much pain that radiated when I tried to move we could not pinpoint the cause. Was it nerves? Muscles? Something deeper inside?

I told Mark to give me my morphine. In my mind this is what they do at the ER when you are in excruciating pain and cannot pinpoint it. They get you out of pain and then talk.Mark finally relented after about 15 mins when it was obvious the pain was not leaving and in fact worsening. 15 minutes after that I rolled to my side and was free of pain. So did good Lorna respect that her body was worn out and there was little cleaning she could do to help her husband?Nope. I got up. As I was going about the house I started coughing. A deep barking cough that kept surprising me when it happened. But the coughing fits got worse and worse. I would blow my nose repeatedly trying to breathe through the nose and not the mouth which would aggravate the throat/chest. My nose was running so I could not breathe through it. (Smooth moves all that sobbing. It gives you a headache, puffy eyes, and you can’t breathe through your nose for hours!)

So now I am covered in a cold clammy sweat from coughing so long and hard as I crawled around on the kids’ floor picking up toys. They were helping of course, which meant every toy needed to be inspected and tested to ensure its kid approval before it was put away. Finally, I could no longer hold on. I was not in pain, I was dizzy. I was coughing up my lung or trying to. I wondered if the morphine making the pain stop triggered some sort of bronchial spasm. Whatever it was causing the cough I couldn’t stop, I was sweating, and knew that I was being just plain dumb.

Besides not being able to scold the kids because it starts a 5 minute coughing spell, is very annoying and cramps my parenting style which is for them to slowly drive me crazy while my body gives out.In the end after my instance, Mark called his father to come help watch kids, while I rest and he cleans. I hate needing to rest. I hate being told to rest. I hate that for some reason (probably the hot mint tea w/ honey and codeine cough syrup) I had stopped coughing by the time Grandpa came over.

Here I am. My back is beginning to hurt again as I write this. I’m still exhausted from LAST weekend on my feet. I am watching myself shuffle, need a cane more, wear out by 1pm instead of 4pm. Now there is sharp shooting pain down my right arm. Call the doctor? Why so I can sit and wait to be told “It’s your MS, here is cough syrup and pain meds, go home.” I got my meds. I don’t need another doctor from UC Davis looking at me like I’m a freak when I come in and NOTHING shows up on the chem. or examination. I just need to finish ranting and go back to bed. Like a good disabled woman. I hate being good. Sometimes the MS/cold/flu/stress wins.

And some days they lose. Tomorrow is another day and another chance to kick auto-immune butt.

Sexy Bladder Woman

I have bladder problems. We’re not talking the mother thing where we all cross our legs when we sneeze. Nope I have a bit more of a problem than that. I’m 33 and I buy Poise pads and wear them on a regular basis depending on what I am planning to do that day.

According to which doctor you speak with I have a spastic bladder, it squeezes and releases giving me a sense of urgency or stopping my urine stream when I’m not done.

Then I also have a flaccid bladder. (Yeah that’s enough to make any woman’s self esteem shrivel up into a tiny ball.) This means my bladder fills up but does not know when it is over full into the last second or also fails to empty properly.

Dispense with the medical terms, I run in to go, I sit and wait to go, and then have to go again 15 minutes later. I also get these interesting sensations like someone is running a hot poker up my urethra. And it’s not infection we checked. I’ve tried the bladder pills. Side effect: Dry mouth. So I drink more, which means I pee more. Who thinks these medicines up? Wouldn’t you consider dry mouth as a side effect of a pill meant to make people stop peeing all the time a REALLY BAD THING? Wouldn’t you go back to your chem. lab and think of another nasty side effect like nervousness to add in, instead of dry mouth? Just a suggestion.

So the pills don’t work.

So I wear pads.

I don’t have total loss of bladder control but if I’m going to be dancing with the kids, thicker pad. If I’m on my period there seems to be a leakage problem and if I’m planning on being out for a long time or walking a bunch, need a pad for that.

Now tell me one thing. How do you wear a pee-pad with a thong?!

I mean if I want to feel sexy, which is difficult when you need to buy products from the old person diaper section, (We’ve all called it that until we ended up there), What do I do? They don’t work. Or if you try it you’re in for an interesting surprise. You thought thongs were butt floss before, add a pad and things get ALL confused. Plus you’ll walk funny (or funnier as the case may be) but it won’t make you feel sexy.So how am I supposed to feel sexy when I dribble? “Yeah this is a classic 70’s model but she has a leak.” Or need to pee in the middle of intimate situations? Or can’t bring myself to ruin sexy underwear nor put a pad in it? It really puts a damper on my mood and my self esteem might as well just roll itself up and go find another person to belong to.

There are days when I tell myself I don’t have a leakage issue and god forbid if I sneeze. Or walk. Or hop. Or hit a bump in the road. Then I get reminded that things are not as tuned up as they used to be.I’ve been told to do Kegel exercises. This is where you tighten an inner muscle you can’t even find in the first place, over and over to strengthen your retaining walls. You can do them any time of day and no one will know. Unless you get this urgency feeling with it like I do and your face screws up like you ate a lemon. But I do get to feel sexy.

Because I have a man who said “I do” no matter what. And boy did he get stuck with “in sickness.” Pee or not, pads or not, he loves me. And when I come wobbling into the bedroom in high heels that could break my neck and itchy hosiery, he loves me more just for trying. I don’t know many men that would even discuss bladder issues with their partner let alone accept them and find time to laugh about them. (Whenever he catches me sitting down fast he says “sneezed huh?”)In closing, if it weren’t for my man and his support at times when my symptoms make me feel less than sexy, I don’t know where I’d be. Probably in sweat pants eating a gallon of ice cream. Oh wait. I do that anyhow.

Update on Lorna's MS, kids, etc.

The blog regarding MS and pregnancy was written March 2008. My how things change.I am currently on Betaseron for my MS. I am having a relapse. Actually everything I had to keep me busy, having babies,then caring for an ailing father, has ended and now my MS is saying "hey lookie what we were doing to your brain while you were away!" 25 lesions last count (January 2008)Currently I am struggling with the heat, fatigue, and severe depression. My father, with whom I was very close passed in my home March 26, yes it's almost been 90 days and to some I'm supposed to be cool with it now.

Can anyone say Father's Day? Sucked.My ability to be a mother, my idea of a good mother, is constantly plaguing me. I should keep them cleaner. The house should be perfect. They should all see the dentist. Heck they should all be lining up to brush their teeth and wash their hands. Yeah just so Arthur can go back outside and eat dirt, Abby can color her arms with princess pink and Aidan..well he washes his hands so he can plug the sink and do experiements.Some days I dance. Some days my legs are so painful I can't be in one spot long ujness it's on the bed with my legs out straight in front of me. (Even then my legs swish back and forth because I am not comfortable.)

Most mornings I wake up feeling like an oldwoman. Things pop, creak, and do not wish to loosen. Every step is painful until I get moving some. Days and nights of pain, aches, and the coordination of a drunken elephant. So for awhile after dad's death I became a drunken elephant.

Now i am sober. I don't take most of the muscle relaxants or pain killers because they make me tired!!! Again I am on the lazy susan of antidepressants. Spin the wheel and pick one up, when it doesn't work try another!

One day it is good:Arthur is walking now. Aidan is fully potty trained and a good helper. Abby refuses to wear anything but "princess" dresses.Other days I wonder about why I am here. How am I ever going to find a balance between my medications- not too tense not too tired. The balance between children, career, husband, and Lorna.

Up side of having kids: you can't dwell in the dark for too long. Because someone walks by with a box on their head and you can't help but laugh.

Having a baby after diagnosis of MS

A recent question about going forward with pregnancy after a diagnosis of multiple sclerosis got me rolling:I had three babies since my dx of MS. They are all beautiful, spirited (gosh give me strength) and I do not regret aminute of it. (Except when trying to get a shower in. Or maybe a nap.)

Anyhow while the first 2 pregnancies had difficulties, I attribute most of it to an incorrect dx of gestational diabetes. Some OB's will tell you that MS makes you a "high risk pregnancy." some won't.From my view, being pg with MS was awesome. I finally felt normal after 5 years. My energy came back and most of my aches and pains were the same as any other pregnant woman.

The next two pregnancies(Abby and Arthur) were a bit more difficult on my system but the endresult was worth it.I never had a relapse during my pregnancies. I did get ill. Wheneveranyone in our house catches a bug, I only get a touch. (I am not currently taking any of the shots or I'd be getting sick all the time.)

Anyhow whenever I got pregnant I knew it was the real thing when I came down with an awful cold or strep throat. This is because the body suppresses the immune system naturally when pregnant. (So your body does not attack the fetus as a foreign invader.) Why the medical profession can't expand on this is beyond me.It also meant that after Aidan came along if he got a bug while I was pg with Abby and Arthur, I got sick. It sucked. But hey I had years of not being sick to make up for so that + pregnancy coddling by hubby was a nice vacation.

The worst part of all my pregnancies was joint pain in the groin area. It felt as if my uterus were going to drop to the floor when I walked. I wanted to lie on my bed with an ice pack between my legs. I've heard this "ligament pain" gets worse which each consecutivechild because the muscles are already loose.But throughout all of this I was simply an average pregnant woman.

What made me diff was gestational diabetes. Yes my first two were premature. Do I think it had anything to do with my MS? Heck no.Now for the after part. Yes there was always a relapse.

Usually about 3 months after. Maybe they started right at the beginning, but how can you tell MS fatigue from sleepless nights and after-birth pains?I had optic neuritis, fatigue, and eventually the numb spots. But they did recede and either I was left with some new daily symptoms of they only flare up with heat and stress.

My fingertips are now very odd feeling. Some days they are dead like they've been in the bath too long and others they tingle, but you get used to it. After all I AM going to button my daughter into that dress damn it! I am not going to be beaten by a small package of pudding when I can't feel that lid! And I’m definitely not going to lose the wrestling match between 10 mo old Arthur and the gazillion snaps on his outfit. I tell you it's like dressing an octopus. And not one that wants to be dressed.

So yes there was a relapse each time. Each time it was a bit harder.But you have to add in that each time I had another baby running about and more reason to be tired. Did going off the shots cause a catastrophic relapse? No. Have I gone back on the shots? Yes for a time but all they did was interfere with my ability to parent. I don't need to be laid up feeling like I havethe flu because I forgot to take my Tylenol beforehand and I don't need the headaches from Copaxone. (Besides I just don't go for the numbers in fine print on the handouts for any of these medications.Unless we're talking the heavy hitters.) Ahem off my soap box.

Would I give it up? No. Would I go back and decide not to? Nope. Come on. Miss the midnight cuddles and coos? Miss the bear, Elmo, and light bulb being flushed into the toilet? Nah. (I still have no idea where the light bulb came from.) Miss them covered from head to toe in mud and raindrops, singing at the top of their lungs "no pants! we have no pants!" Never. And by now you must be seeing the lovely chaos that is raising 3 so close together in age. And yes, I am crazy.

There are days when I’m down. I either arrange for help from family and friends, or take a slow day with the kids. They still don't believe "take a nap", is a cool game and I've been trying for years now. I also have an awesome husband who works from home and can take up slack when I am down.However he has a business to run too, so I don't always have the ability to have a relapse. If it happens, we weather it. I also have a strong belief that I should have a t-shirt which reads: This person brought to you by the pharmaceutical companies.

Moms never have much time to be off their feet in the first place.When you're a mom with MS, you get creative. Then you freak out andwonder what you've done. Then your son hands you a bouquet of wildflowers and says "I love you mom", and it's okay again. Never mind he's toddling off to fill my tennis shoes with dirt using a nice spoon.You find a way to do it and DO IT. Because you're a MOM. And that's what we do.Yes folks, Lorna has finally gotten a few things off her chest. Andnow my 15 minutes are up and someone either needs to be changed, fed,or pulled from the drapes.