Monthly Archives: August 2011
Dodger is my 11 year old golden retriever mix, the absolute favorite guy in my life. (Sorry, Jim and Moonspank the Cat!) He has always been the best dog. The worst of his puppy mischief includes chewing up stuffed toys, then eating the white stuffing then pooping said stuffing in the back yard. When he was a year old, he nibbled a hole in the drywall of my North Carolina home. Easy patch and one pop on the nose with no more incidents.
But this morning, this precious love of my life – the dog I nursed back to health over four recent weeks of constant eye ointment and drops thank to a scratched cornea (not to mention the $500+ I spent on vet bills) – managed to anger me, disappoint me and deprive me all at the same time.
On steroids, I am of course hungry. To watch my weight during this treatment, I am watching my carb intake. Obviously, I am excited to fry an egg in some Pam and add three strips of lean bacon. I’m a bit jittery on the roids, so I can’t carry as many items as I usually can at once. I sit my plated hot breakfast on the living room table. When I return to the room with my coffee, my wonderful Dodger has gobbled up my entire breakfast. And he shows no remorse. Even a spank on his backside, which he NEVER gets, does not phase him.
So, for breakfast, I go the protein shake route. Not exactly the “breakfast of champions” I was hoping for. Now Dodger is sleeping on my feet, surely trying to make up for this morning’s poor choice of actions. I guess you can teach an old dog a new trick – even if it’s not the trick you’re looking for.
Another humorous moment in my ongoing MS saga.
Doctors discharged me yesterday around 5:15 p.m. My boyfriend, Jim, had me home by 6:45 p.m., in time to meet the courier delivering my final dose of steroids. Now a three time high-dose infusion, this final gram of methylPREDNISolone went in around 11:00 a.m. today. I’m jittery, all over the place, annoyed, snippy, energetic, bored, in a fog – you name it, I’m feeling it. And so are those around me.
My biggest fear with this treatment has always been the effect the steroids would have on me. There are two main reasons doctors admit patients undergoing this therapy. The first is to monitor the patient’s physical reaction to the vamped up dosage. Steroid medication, such as methylprednisolone, can weaken your immune system, making it easier for you to get an infection or worsening an infection you already have or have recently had. The second reason is so doctors can monitor a patient’s psychological reaction. Hallucinations are rare, but occur. Manic depression can set in, and it’s never good to be home, unmonitored and alone when that starts. My reaction has been severe mood swings.
I never understood the term “roid rage” before this Tuesday. After my first round of treatment, it was like I was out of my body, watching some crazy bitch lose control of her emotions. I was annoyed by everything. Jim was amazingly understanding through my snippiness, crying and more snippiness. Actually, snippy is not the right word. I would use the word mean instead. It’s like I knew how I was acting but had no control over it. Even deep breaths did not help. Hopefully, the worst of this emotional roller coaster is over.
Yesterday was my final of two days in the hospital. Jim’s mom, in from Germany, and her friend visiting from Texas, came to visit. They arrived just as the nurse hooked up my IV. I felt so bad, meeting Maureen’s friend under such circumstances. Luckily, both are nurses / nurse practitioners and understood what was going on with me. I was proud of myself. Besides my incessant chattiness, “evil Michelle” did not surface. (Poor Jim encountered what I obviously suppressed during the ladies’ visit, later in the night.) Felicia flew back to Texas this morning, and I hate I didn’t get to spend more time getting to know her. Hopefully, we’ll have another encounter soon. She was just a gem! The three of us talked about all kinds of things, from my favorite Italian restaurant (which they dined at this week) to fungal infections and trips to the Reading Terminal Market. I enjoyed my girl time with them, and the hour IV drip went quickly, despite several annoying stop and goes due to air in the line and me not keeping my arm straight for the fluids to go in.
Jim arrived just as they left, and he helped me gather my things for discharge. The medical team sent me home with the IV port in my arm so I wouldn’t need a new needle stuck in for my final at-home treatment. The nurse wrapped it in gauze and gave me what I called the “arm condom”. It was more like a shower cap with two holes instead of one – elastic on both sides. With this, I could shower with the port still in. Showers are love, especially after lying on a vinyl hospital bed for 48 hours. You know how sweaty your backside gets, lying on vinyl for that long? Even the white, cotton sheets don’t help cool anything down back there.
I have to say, the team at Penn was amazing – especially the nurses. They were all so caring and quick to help me. Of course, this could be because I was one of the only speaking patients on the floor. (I was on the stroke floor – very depressing.) The food was…well, hospital food. But thank God it wasn’t any better. When I got home, I weighed, and I gained six pounds in two days. Ugh. I have worked so hard to drop 13 pounds in the past few months. Doctors, nurses and even friends assure me it’s just water weight and that it will go down as soon as I’m off the roids. I hope so! In the meantime, I’m trying to drink plenty of water and control my food cravings…which are up with the steroids.
I also have to watch my sugar intake. The steroids make your sugar levels double. I went from 83 (normal) when I was admitted, to 173 (high) after my first treatment. That will go down once I’m off the therapy. My roommate bought me sugar free chocolates. Yummy! I’m craving more now, but they are high in calories, so I’m watching my intake.
My friends are my saving grace through this entire process. One of my first posts on this blog is “Reciprocity”. If you haven’t read it yet, please go back and check it out. It explains why I’m not used to getting back from anyone in my life, why being around large family gatherings is not only uncomfortable for me, but downright weird and why it is so hard for me to accept help from anyone. This week, once again, showed me the amazing support I have in my friends – here in Philly and back home in North Carolina.
Last night, my co-worker and close friend, Michael, brought me flowers. I felt bad – he brought them to the hospital, but during the rush of finalizing home delivery plans for the drugs, coordinating the pick-up of my oral steroids and just trying to channel my emotional turmoil, I forgot to text him that I was going home. He called me from the hospital, where he was trying to track me down. He later came to my house, brought me a dozen beautiful multi-colored roses and sat and talked to Jim and me. What a wonderful surprise, all be it a diverted one. The flowers are from my co-workers. So sweet to know you have support from people in your life.
Peter and Mamie have been Godsends through this. Mamie’s questions to the neurologist were priceless, and quite honestly, questions I would never have thought to ask. She has experience in this field, and I am so grateful for her support. And Peter! What would I do without this happenstance friend from work? We became close after carpooling because we discovered we live near one another. This week, Peter has saved Jim’s 40th birthday party. He took care of things I just couldn’t from the hospital, and tonight, he’s even dropping off cots and air mattresses for friends coming into town.
This morning, Vicki, who I wouldn’t let visit me in the hospital because she’s pregnant with a little girl, came to my house with coffee (sugar free upon request) and a bag full of feminine products no pregnant woman should ever pick up in one purchase. She also brought flowers and water and sat with me through my final infusion. We watched Scott Pilgrim vs. The World, a stupid movie (but a good background distraction) while we sat with the home health nurse. The nurse was a really nice guy from Bucks County. It was fun chatting with him and watching TV while waiting for the hour long IV drip.
And my friend, Kenny, back home in North Carolina. He took off work with plans to fly here to stay with me through the weekend – to help with Jim’s party, packing for Germany and to just have around. But his steering column broke loose on his way to the airport at 9 a.m. Thank goodness he is okay. He won’t make it here, but I know he wanted to be here for me, and that means the world to me. (I love you, Kenny!)
I am also grateful for the genuine concern from my colleagues. Phone calls and texts to just check in and not ask for anything from a number of my managers and colleagues – it just makes you feel better when things get crappy.
So, once again, through all of this, I have learned that while MS sucks, and it really does, it also shows you all of the beautiful things….all of the beautiful people…surrounding you every day. I’m not a religious freak, but I can honestly say I am blessed.
Oral meds start tomorrow. Let’s hope for de-puffication to begin asap!
It’s a little after 1:00 p.m., and I’ve just finished talking with the head neurologist on the floor. She’s thrilled with the progress I’ve shown with the first steroid treatment. However, the headache lingers, and I’ve found new friends.
It seems the Copaxone lowered my immune system, so my usually tough as nails antibodies did not fight off the urinary tract infection forming in my body. It also caused a perfect habitat for yeast in my body (not to gross anyone out, but yeast is not just related to “that” area.) When I started the steroids, it ramped up cell production in my body – muscle cells, the cells necessary for reparation to my eye, and yep, bacterial UTI and fungal yeast cells. The steroids also cause my blood sugar to spike. So, I have gone from being on painkillers for my headache and steroids for the optic damage to a laundry list of drugs. Oral antibiotics, anti-fungal pills, steroids, my daily copaxone injection and now an insulin shot. Oy vey!
There is good news. Because I’ve done so well with the steroids, I may get to go home after treatment number two tonight. A home health nurse would come to my house tomorrow and hang the IV bag for me. My port would stay in until that third treatment is finished. After that, I will do a step-down steroid treatment, using oral prednisone to gradually decrease the steroids in my body.
For my newly developed, non-neurological symptoms, I would see my primary doctor asap. But I can’t make an appointment with him until I know I’m getting out of here tonight. Nothing’s ever easy.
I did have two wonderful visits today. One from someone who has become a dear friend quickly, who is also diagnosed with MS. This is one awesome chick who I admire – for her knowledge of the illness and her refusal to give into it. I draw my strength from her.
The second visit was from Oscar the Therapy Dog. He is such a cutie! (And much better behaved than my dogs!) His handler sat, and we talked for about 45 minutes. A delightful lady, an oncology nurse, who also volunteers her time visiting patients with her trained pup. Ends up, we know many of the same people. Philadelphia really can be a small place!
So, an upswing to my day that will hopefully have me sleeping in my own comfy bed tonight, with my own snuggly pups and kittens. All I have to do is promise to rest and to limit my sugar intake until I’m off the IV steroids. Doable.
I finally got to sleep around 1:00 a.m. on Tuesday night / Wednesday morning. I turned on iTunes, pulled up the library and popped in my earbuds. I pushed them in as deep as they would go, probably not the best advice for your auditory future, but desperation overcame me.
The constant beep, beep, cough from the monitoring equipment and other patients is enough to drive you crazy – with or without medically induced raging hormones. My nurse likened my current steroid treatment by saying, “It’s like being on your period multiplied by a hundred times.” Oh goodie.
And as if that isn’t enough to make any woman say, wow, this is some crazy stuff, and make any man realize it’s in his best interest to steer clear for a few days, add to the 100-times PMS to the obvious confusion over our time zone designation. Maybe I’m the one confused. But the hospital should really inform you, upon walking through the metal detectors, the sliding glass ER doors and over the threshold into the wing of the patient holding rooms, that we have just stepped into the HUP Timezone.
Forget Eastern Standard Time. Not only was waking up to the nurses’ hourly checks on my roommate in my semi-private room disruptive to my futile attempts at getting sleep, the 4:40 a.m. visit from my nurse racked up more tick-tock on my sleep debt. I mean, I’m glad she came in to give me a single anti-biotic pill and whisper, “You have a urinary tract infection and low grade fever. This will help.” Oh, thank God! Because that UTI just couldn’t wait until 7:00 a.m. And five minutes later, the lady from the labs came in for blood. ”Let’s not use your port. Let’s make a new injection.” That actually doesn’t bother me any more. I am so used to needles, it is hard to believe I am the same girl who once thrust a nurse’s hand off my rear-end after the needle was already in. I was young, but I remember the doctor’s visit and how angry the nurse was that I struck her.
After swallowing the UTI meds and giving up a few more vials of my blood, I put my earbuds back on and turned out the light. But it was too late. I was wide awake and the beeping grew louder “next door”. So, I sit here, and do my favorite things in life: write, listen to music and read.
Now let’s get rid of this headache today.
Staying upbeat and positive when you’re diagnosed with a chronic auto-immune disorder can be tough. Today’s especially a test of my cheery outlook on life. Not only am I in the hospital for the next five days, but an ample dose of high-powered steroids squash any attempts at being upbeat.
I have told only a handful of people I am here. I don’t want anyone to worry about me. Their worry will, in turn, stress me out. I just don’t deal well with others fluttering around me to make sure I’m okay. I prefer to do the worrying.
I am already annoyed by the inconvenience of this hospital stay. I am missing each of my final days of work before a two week vacation begins. I still need to pack and be ready for my flight to Germany on Monday. And most importantly, I have been planning my boyfriend’s 40th birthday party for months. A lot of months. I know things will still come together because my amazing friends will help me. To those friends, if you are reading this, thank you. I love each of you.
So, why am I here, at the hospital? Yesterday, I awoke to an indescribable headache. My Facebook status update described it the best I could: Did someone break into my room overnight and beat me in the head with a hammer? Nothing I did or took eased the hurt – for over 12 hours. When I woke up this morning, the headache was still there, in hospital terms, down from a 7 or 8 to a 3 or 4. A 3 or 4 still hurts – quite a bit.
On my drive into work this morning, I began to see everything out of the corner of my left eye fade to black. I watched as a cloud of thick, black cloaked my peripheral vision, creating an effect I can only liken to a Philadelphia carriage horse, wearing blinders to block distractions from passing tourists. By the time I got to work, the black cloud covered half my left eye. I could still see, but there was clearly something wrong, and my fear turned from my headache, which I knew I could endure until it subsided, to my vision. Headache goes away, that’s good. Vision goes away, that’s bad. Real bad.
I called my neurologist. She’s on vacation. Figures. Just my luck. But I was happily surprised when another neurologist from the hospital called me back – within five minutes. Surprised and concerned. They never call back that quickly. This must be serious, I thought. The doctor told me to get to the emergency room to be evaluated and to be ready for admission. So, I left work in the burbs and headed to the hospital in the city. When I walked into the emergency room lobby at 10:30 a.m., I looked around and saw only three people. This just doesn’t happen in a Philly ER. A nurse called me back right away, and the speed of the process relieved me. Then I sat, slept, sat, played Scrabble, and sat some more. My skull is throbbing, and nothing is alleviating the pain – not the prescription strength motrin, not the IV toradol, and certainly not the Tylenol with codeine.
Doctors finally admitted me around 6:00 p.m., the focus now turned from the axe that’s clearly stuck in the top of my head, to my faded vision. The nurse pumped in the first round of high-dose steroids. It’s one of five, that will last over a five day period. It’s Tuesday. You do the math. That puts day five of treatment on…yep, Saturday. Jim’s birthday party. Great. For an independent person who prefers to do everything herself, I’m going to really have to rely on some folks in a big way this time. Thanks, MS. You just suck.
This is my first time on the steroid treatment. I’ve heard about it, the possible side effects. So far, I don’t see purple monsters in my room. But even without the hallucinations, which evidently effect ‘older’ patients than those my age, I still feel the emotions nearly burst from my body – especially my mouth.
I’m in a semi-private room. That’s the hospital’s way of saying, you’re in the hospital, there is NO privacy. I’m in the locked stroke unit. (Evidently, many stroke patients wander. Unlocked doors could mean bad news – for the patient and the hospital.) The woman next to me, a precious older lady, has, from my best guess, suffered a stroke. She’s having trouble communicating – she can’t pronounce her words in any intelligible form. But that’s not annoying to me (the steroids haven’t shrunk my heart!). It’s her Snookie-sounding daughter who, with the right intentions, I’m sure, is talking so loudly at her mom. The lady didn’t lose her hearing. She just can’t speak clearly. And that curtain between your half of the room and mine, well, it’s not sound proof. Headache just got worse.
As I’m lying in my bed, a big man comes into the room wearing scrubs. He’s here to fix my table that’s stuck, and I look at him, I mean, it WAS me looking at him. But what I said did not sound like me. I said, “I’m going to shoot myself. She is so loud. I have a headache. I can’t take this. I need earplugs. And I want a private room.” Keep in mind, if I could hear her, she could surely hear me. The man laughed, said, “Private rooms are $500 a night. But I’ll be right back.” Within a minute, he WAS back, and with him, he had a handful of tiny, white and blue boxes. He said, “Just in case you need more. We don’t want you shooting yourself.” and he let out a deep laugh, almost a giggle. I opened one of the boxes, and there they were – bright yellow foam earplugs. God bless you, big scrubs-wearing man. I love you.
I’ve always fallen in love too fast. The earplugs didn’t work. Now all I could hear was a somewhat muffled Snookie-voice talking on the phone and then to her mom and then to the nurses. This time, I showed some restraint. I pulled out my laptop, opened iTunes, popped in the jack to my earbuds and cranked up Blink182. As loud as it would go.
I put a pillow over my head (I couldn’t reach the light, and light seems to make that axe wedge its way even deeper into my brain). I drifted off to sleep. I awoke to Jim tapping my arm, and I jumped. I had slept through someone coming in and taking my food tray off my adjustable table. Unhappy about losing a pint of milk and lemony iced tea, I pouted about the disappearance of my tray. Then, I started to cry.
It wasn’t just the tray. Everything hinges on these next few days. I want Jim to have the most incredible birthday ever so he’ll get over the silly idea that turning 40 holds some magical dilemma making you question where your life has taken you – and where it hasn’t. He’s the smartest, most handsome and simply awesome person I know. I cannot imagine a life without him in it. Period.
And work. I leave for Germany on August 22nd. This was my week to tie up loose ends in the Marketing Department. Already down a staffer and in the middle of a website rollout, we are uber busy. I didn’t even bring my work laptop with me, or I could have worked on brochure layouts while here for five days.
And home – I just want to be there. I have grown to love my house in the burbs. At first, when I found myself there alone so many days, I hated it. I could not wait to get out of its big, hunter green door every morning. And I did everything to not come home until it was time to sleep. But now, I find peace just being inside that door. The dogs and cats who run to see me, the hardwood floors that shine a bright hello as I scurry inside, the key rack where I always put my keys because, any other drop off location, and I’ll lose them. Everything about that house (except the yard work) is happy to me. It is home – so much unlike any home I ever had back in North Carolina. Happy, content, peaceful. What home should be.
Between the party details, the business matters at work and just missing my own bed, I grew amazingly grumpy and then cried. Jim would argue that’s normal behavior from me. But today, it was uncontrollable. It was as if I was outside my body, looking down, saying, “Be nice. Don’t stress. It’s silly to cry because you may not get a mani pedi before your trip.” Still, my psche didn’t listen.
I’m settling down now, emotionally at least. I can’t sleep. It’s 12:20 a.m., and I’m as wide awake as if I’d just made my second trip through the Starbucks line. I dread tomorrow, when I start this entire process over again. I think I’d rather see purple people in my room than to feel so out of control of my emotions.
I love the hot weather. All winter long, I dream of the days of summer, when the sun shines on my face, radiating heat onto my skin. But over the past year, I have noticed a significant change in my body’s ability to deal with the heat.
When I was a teenager, I spent my summers at Myrtle Beach in South Carolina. All day long, I’d lie in the sun, swim in the ocean and let the sun’s rays dry my skin and hair. I’d literally bake in the heat, and I loved it. I applied sunscreen often and liberally to protect my tender, white skin from burning. Little did I know that by the age of 37, I would no longer be worried about the sun’s affect on my skin. Instead, it’s the heat that sucks the life right out of me.
It’s a vicious cycle. I love hot weather, the pool and the beach. But I’ve come to the sad realization that heat causes my body to enter a state of exhaustion. That leads to fatigue lasting for days. And after days barely able to pull my body from bed, you got it – the depression kicks in.
I have always been a person on the go, never slowing down. Rest is boring to me; watching television makes me antsy; and the thought of taking a nap? Shudder. When I first felt the heat related fatigue often linked with MS, I thought it had to be all in my head. I had always loved the hot weather. I vacationed in hot climates all the time. Hiking in Hawaii for twelve hours straight had no effect on me back in 2005. An entire day on the beaches of Punta Cana had proven relaxing, not uncomfortable. Hot yoga was an incredible energy booster for me. What could have possibly happened to change my body’s clear love for above 90 degree temperatures? MS happened.
According to the National MS Society, many people diagnosed with multiple sclerosis see their symptoms reappear or get worse during hot or humid conditions. And it’s not just the weather that effects them. A fever, increased body heat from exercise and even hot showers can cause symptoms to reemerge. Experts say the reemergence can happen even with a quarter to a half a degree change in body temperature. The reason? Frayed nerve endings have a tougher time conducting electrical impulses as the body heats up. (Source: http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/exacerbations/heattemperature-sensitivity/index.aspx)
The good news? These heat-related symptoms are not permanent. They often go away when the body temperature cools. I have a girlfriend who also has MS. She takes what she calls, “An MS Shower”, when she starts to feel the effects of heat on her body. She turns the water as cold as possible and jumps in the shower.
I have to say, it works. Last summer, I was trying to save cash by cutting my own lawn. After the first couple trimmings, I realized the hour-long job in the heat was just too much for my body. The first time I cut the grass, I was left too exhausted to even get out of bed for two days. I felt like I had the flu, and the numbness in my left leg from my first MS attack came back. Eventually, I felt better. The second time I attempted to cut the grass, I felt the same effects from the heat. As soon as I was finished with the lawn, I took an “MS Shower”. It wasn’t easy, getting in at first. But after being under the icy cold water for a few seconds, it felt amazing. I could feel my body temperature decreasing, and I did not have any of the symptoms I had experienced before.
The National MS Society shares some other great tips on ow to beat the heat. Some are no-brainers (pardon the expression), like “Stay in an air-conditioned environment during periods of extreme heat and humidity.”. If it were only that easy! But who wants to be trapped in the house all day because it’s over 80 degrees outside? Your life doesn’t have to stop just because you have MS and it’s a long, hot summer. And you don’t have to move to Alaska to feel 100%. Check out these tips to make sure your body stays happy and healthy during warm weather.
And remember, life is too darn spectacular to ever give in to your disease. Treat it as you would your worst enemy – keep it close, knowing what feeds it and what fights it. And never give up on the fight. YOUR life, love and happiness are all worth it.
Today I went to my general practitioner to talk about some pretty intense pain I’ve been having in my left leg and hip. Why didn’t I got to my neurologist? Because I am tired of always being told, “It’s the MS.”.
Maybe it is the MS, but I hate the dismissive and general diagnosis I always receive when I go to my ‘MS doctor’. I find, that when I got to my general doctor, he looks at me with a fresh set of eyes. He knows I have MS, but he doesn’t automatically chalk it up to my disease. I think my neurology team is awesome, but sometimes I feel the highly focused doctors are so intensely looking at one possible source of a symptom, that’s all they see. This isn’t a concept unique to me. Many members of my support group have noticed the same thing when they visit their neurologists with complaints.
My doctor’s appointment went well. The doc thinks my ongoing ankle pain / failure IS related to the MS. But he thinks the hip and calf pain may be from a disc pinching my sciatic nerve. He prescribed anti-inflammatories for the hip and leg. If they don’t work within a few weeks, he’ll order and MRI. More importantly to me, it was just refreshing to have someone look at me without the ‘MS blinders’ on. Not every ache and pain is related to multiple sclerosis.
That’s why it is important to have a variety of doctors and specialists on your medical team. From a general practitioner to a psychiatrist to a neurologist, diversification is important!
The Cleveland Clinic offers a nice overview of who should be on your MS medical team. The link below also shares important details about each team member’s job in ensuring your overall health:
When the doctor told me I had MS, I was devastated. In the days that followed, I slipped into depression. The only problem – I didn’t really know what depression was. I am and always have been an upbeat, always (okay, most of the time) smiling person. I never understood why anyone would curl up in a ball an lie around all day, wasting their time worrying about things in life. If something bad happened to me, I took control of the situation and made things better for myself. That all changed when I found out I have MS. I quickly learned what depression looked like, felt like and how hard it was to pull out of.
I also learned that I don’t have to be the strongest person in the world all the time and that it’s okay to cry – even to lean on others sometimes.
Whether you are newly diagnosed or have had MS for years, you may be battling depression. The National MS Society offers some insight into how MS and depression are linked. Read more here:
My guilty pleasure: ChickenTikka Misala. If only a cure to my MS were that simple! According to many holistic experts, an ingredient in that favorite dish of mine may very well help MS patients avoid symptoms. I’m not endorsing holistic treatments as a sole option for anyone, but I do believe the food we take into our bodies has an affect on MS. Read more on Earth Clinic’s website:
And if you’re so inclined, here’s my favorite Chicken Tikka Misala recipe:
An Italian doctor has made headlines recently, after treating several MS patients with a form of “brain angioplasty”. It’s a controversial treatment with varied reactions from doctors around the world. Here are a few articles about the treatment: