Five Months Without Copaxone…
…and I feel great. I know there are people reading this who think I should be on my meds, but I have to say, I have felt so much better since stopping the injections. I still ignore the fact that I have MS, but I think that’s better than dwelling on it and letting the disease consume my life.
My ankle pain has gone away, and I’m not injecting myself daily with a chemical compound that lowers my immune system, making me prone to even worse illnesses than multiple sclerosis.
I believe that life is what you make it today. It’s always the mindset I have lived by – to live life in the moment – so why let this stupid diagnosis change that? I won’t.
I believe we can overcome anything with the right atitude. This is just one more of those examples in my life.
Avoiding the Unavoidable
I haven’t posted a blog entry in quite some time. Here’s why: I’ve been avoiding…ignoring my diagnosis. Other than the overwhelming feeling of fatigue that I push through every day, I feel fine. That may sound silly to you, but singular fatigue versus the numbness, pain and fatigue combo I’ve experienced since October 1, 2009 is the upswing to whatever is going on with my body.
Since visiting a homeopathic doctor in my area, my left ankle and leg pain is almost gone. He gave me something called Pesticide Blocker to cleanse my body of the pesticides I was exposed to year after year while living on a farm and working in my parents’ farm supply store. I did a lot of reading online, and everything I found on this endless resource of information we call the internet says the same thing about pesticides: once they’re in your system, they’re pretty darned hard to get out.
Since taking this supplement, which is really a high dose of Thiamine, the change in my physical feelings, other than the desire to stay in bed all day, have been incredible. I’m working out again. I’m more focused than ever, and when I get up in the morning to tackle the day, the pain that once nearly sent me crumpling to the floor is gone. My ankle doesn’t “fail” any more. I’ll take that.
Still, I’m exhausted. Maybe it’s because of my schedule – full-time job, graduate school and teaching two courses a semester at a nearby university. I’m not even drinking as much as I used to. So what’s going on? Why did I come home from a weekend trip with my boyfriend on Sunday, lay down for a nap at 3pm and not wake up until 9pm? And why was I so eager to go back to sleep by 11pm and not so eager to get up at 7am today?
No matter how much I ignore the fact that I have MS, this unquenchable thirst for sleep reminds me every day that something is wrong. I’ve had almost every other part of my body checked for problems – mostly in an effort to debunk my neurologists. I haven’t given myself an injection of Copaxone in over two months in hopes the real problem will surface. No matter how rational an argument my dear partner makes to me, I still struggle with accepting my diagnosis.
Two years and three months after my diagnosis, I have no new lesions on my brain. Yet, I’ve had an “attack”. So where are the lesions? Why aren’t they showing up on my new MRI? Is my immune system just attacking the same spots on my brain over and over? What are the chances of that? And if they were “repeat offenders”, wouldn’t those old lesions show up as active?
I’ve spent my entire adult life as a journalist – digging to get to the truth of every situation, whether at work or in life. But this time, I just can’t seem to get to the bottom of what’s going on – at least, not in my mind. I just can’t bring myself to believe that I have MS. And that’s foolish, because I know that, until I accept what three different neurologists have told me, I’m not going to beat this.
If you’re newly diagnosed, and you are reading this, know that the uncertainty of this disease does not go away. At least, it has not for me.
MS = Mood Swings? From the National MS Society
Demyelination and damage to nerve fibers in the brain can result in emotional changes. Some of the medications used in MS—such as corticosteroids—can also have significant effects on the emotions.
It may be difficult to adjust to the diagnosis of a disorder that is unpredictable, has a fluctuating course, and carries a risk of progressing over time to some level of physical disability.
Some of the emotional changes observed in MS include the following:
Major depressive episodes as well as less severe depressive symptoms
Grieving for losses related to the disease
Stress and reactions to stressful situations
Generalized distress and anxiety
Emotional lability or mood swings
Pseudobulbar Affect – uncontrollable laughing and/or crying
Inappropriate behavior such as sexual aggressiveness
The National MS Society is a great resource for anyone diagnosed with MS and for friends and family members of patients.
MS sucks. It doesn’t have to suck the life out of you.
Hurt
Sometimes it hurts. It hurts to move. My entire left side throbs with a pain that radiates from my neck, down through my shoulder, then into my hip, around my calf and into my ankle. It’s constant, but sometimes worse. Much unlike the pain on my right side, which feels more like an electrical shock, forcing me to wince before it exits my body. The left side pain makes me want to stay in bed some mornings, but I get up any way. A hot shower helps, for a while. But when I start to walk, it gets worse again. It sucks. I’m 37, and I feel like my grandmother used to complain of feeling when she was in her 60s. Maybe she had undiagnosed MS. Or maybe I’m just getting older. Or maybe I’m just destined to feel this incredible, nearly debilitating pain from time to time to keep me in check. I say nearly debilitating, because I refuse to allow it to take anything away from me. I hurt. I get cranky. I get down. But I won’t stop. I can’t. The first time I allow the pain to stop me is the first time I give into my opponent. And once you cave to it, it’s only a matter of time before you give up again. And again.
Today, we walked from 72nd Street in New York’s Upper East Side, down past 2nd and 1st and even further beyond. My backpack was extremely heavy, and it pulled at my throbbing shoulder as an enemy would jab at an open wound. I had no choice; I couldn’t dump my backpack, and I refused to give into the constant reminder of my disease. I stopped for advil, downing three while still in the store. 600 milligrams did little, confirming the source. Today, I feel like a gnarled knot of rope, each mis-tied spot pulling and causing strain on the rest of my body. Some may say that walking more than 70 blocks (almost five miles) would cause some aches and pains. Maybe so – but not like these. And not within one block of your starting point. I know my body. I know my tolerance of pain. Today, I was pushed to the limit.
Tonight, I plan on taking a potent helping of melatonin. Or maybe benadryl. Whatever makes me sleep and, for eight hours at least, forget the hurt. In the meantime, I leave you with this song by Johnny Cash. It’s somewhat become my theme song.
Injecting Your Brain to Produce New Myelin?
A friend just forwarded me a fascinating article on MS at The University of Buffalo (New York) research and the possibility of injecting stem cells into the brain to produce new myelin. The link: http://www.buffalo.edu/news/12952 and the full article.
- A precise method has been developed that prospectively isolates just the stem cells that can treat multiple sclerosis and childhood diseases caused by the brain’s inability to make myelin.
–After analzying genes in different stem cell types, the scientists searched for and found the genes that were most likely to differentiate into stem cells that make myelin.
–The human stem cells were then successfully injected into the brains of mice with MS.
–The new method brings the prospect of clinical trials that much closer, the scientists say.
BUFFALO, N.Y. – The prospect of doing human clinical trials with stem cells to treat diseases like multiple sclerosis may be growing closer, say scientists at the University at Buffalo and the University at Rochester, who have developed a more precise way to isolate stem cells that will make myelin.
Myelin is the crucial fatty material that coats neurons and allows them to signal effectively. The inability to make myelin properly is the cause of MS as well as rare, fatal, childhood diseases, such as Krabbe’s disease.
The research, published online and in the October issue of Nature Biotechnology, overcomes an important barrier to the use of stem cells from the brain in treating demyelinating diseases.
Until now, it has been difficult to separate out the right progenitor cells – the ones that will develop into cells that make myelin, explains Fraser Sim, PhD, first and co-corresponding author on the paper and assistant professor in the Department of Pharmacology and Toxicology in the UB School of Medicine and Biomedical Sciences; he did much of the work while he was a researcher at Rochester.
“Characterizing and isolating the exact cells to use in stem cell therapy is one key to ultimately having success,” said Sim. “You need to have the right cells in hand before you can even think about getting to a clinical trial to treat people. This is a significant step.”
Sim and Rochester graduate student Crystal McClain ran extensive analyses looking at gene activity in different types of stem cells, leading to the conclusion that stem cells carrying a protein known as CD140a on their surface seemed to be most likely to become oligodendrocytes – the type of brain cell that makes myelin.
The UB and Rochester scientists then injected the cells into the brains of mice that were born without the ability to make myelin. Twelve weeks later, the cells had become oligodendrocytes and had coated more than 40 percent of the brain’s neurons with myelin – a four-fold improvement over the team’s previous results published in Cell Stem Cell and Nature Medicine.
“These cells are our best candidates right now for someday helping patients with M.S., or children with fatal hereditary myelin disorders,” said Steven Goldman, MD, PhD, co-author, the leader of the team and professor and chair of the Department of Neurology at the University of Rochester Medical Center. “These cells migrate more effectively throughout the brain, and they myelinate other cells more quickly and more efficiently than any other cells assessed thus far. Now we finally have a cell type that we think is safe and effective enough to propose for clinical trials.”
An eventual treatment of a disease like M.S. might involve injecting stem cells to create myelin in the brains of patients.
“Another approach,” says Sim, “might involve using certain medications to turn on these cells already present in the brains of patients and thereby create new myelin. The use of the new techniques described in this work will permit us to better understand how human cells behave in the brain and help us predict which medications may be successful in the treatment of myelin loss.”
The new approach may also be applicable to Krabbe’s Disease, Sim says, which also involves the breakdown of myelin. Sim, who came to UB in 2009, is actively collaborating on related work with researchers at the Hunter James Kelly Research Institute, a partnership between UB and the Hunter’s Hope Foundation and located in UB’s New York State Center of Excellence in Bioinformatics and Life Sciences.
In addition to Sim, McClain, and Goldman, other authors of the paper include Martha Windream, assistant professor in the Department of Neurology and technical associates Steve Schanz and Tricia Protack, all of the University of Rochester. The work was supported by the National Institute of Neurological Disorders and Stroke, the National Multiple Sclerosis Society, the New York State Stem Cell Research Board, the Adelson Medical Research Foundation and the Mathers Charitable Foundation.
Sometimes it’s Your Best Friend that Lets You Down
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.
Roid Rage, True Friends and De-Puffication
Flowers from friends and co-workers. And my cat, Moonspank.
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!
Keep in mind, I had just lost 13 pounds before this treatment. I'm a little sensitive about this! But I also know this is silly and vain. I have friends beating and losing to cancer. My life is okay, and my face is the least of my worries.
Moving Fast – Recovery and New “Friends”
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.
Oscar the Therapy Dog is part of a volunteer group visiting hospital rooms at CHOP, U of Penn and Jefferson
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.
New Time Zone Designation: HUP
Michelle's IV Port
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.
