I’m Back!

Wow! It’s been so long since I’ve written anything to post on my blog, I don’t know where to start. I think it’s best to give you a few updates and leave some more detailed stories to share soon. I’ve wanted to write, but I had some “restrictions” limiting what I could write about. But now I’m back, and looking forward to spending more time here.

I’m sure it comes as no surprise that my bladder is still pretty high on my “invisible symptoms that suck” list. I’ve continued to have Botox injections into my bladder every three months to try and help with my retention issues. Unfortunately, I need to have both my urethra and bladder dilated (stretched) with each procedure, so I have to go under anesthesia and come home with a foley catheter each time. It does seem to be helping, but I continue to have a hard time peeing almost daily. I’m sure that’s due to my MS brain continuing to short-circuit when it comes to sending the correct signals to my bladder. The good news to this ever-present problem is that I’ve had the same urologist forever–and he’s the best!

For reasons unknown, but coincidentally after my second round of Lemtrada, I’ve lost my appetite and too much weight. Things just taste different Continue reading

Tagged , ,

My Bitch of a Bladder

I should start by clarifying that if I’m upset with any part of my body (referring to it as a bitch), it would be my brain, since my neurological disease has been wreaking havoc in different parts of my body for a long time. I’m writing this in case there is someone out there that is dealing with some of the same issues… maybe knowing someone else feels your pain can be comforting.

I have written about my bladder issues for many years. I Really Need to Pee! was written way back in April 2012, and SomeONE with MS talks a lot about the invisible symptoms living with daily bladder inconveniences. My symptoms were initially urinary dysfunction/retention, which meant I wasn’t able to empty my bladder completely, so I’d end up with countless bladder and kidney infections.

After a few failed attempts to “dilate my urethra”, and many years of having to self-catheterize, I had surgery in 2005 where an implant (a pacemaker-like device) was effective in helping my MS brain send signals to tell my bladder to empty. It helped me for many years, but bladder issues have been prevalent in my journey with MS for as long as I can remember. Since that initial surgery 11 years ago, I’ve had four more to replace it or to change the battery.

Last year I started having a different kind of problem with my bladder. Continue reading

Tagged , , ,

ROUND TWO

“He who is not courageous enough to take risks will accomplish nothing in life.”

~Muhammad Ali

It’s hard to believe it’s been a year since I began my journey with Lemtrada. Tomorrow (Monday) I step back into the ring once again, and quite honestly, I’m not as positive as I’d like to be, but hopefully more prepared. They say the benefits of this therapy outweigh the risks, but I sure wish I felt more confident going into the second round (ding-ding-ding!).

Sadly, my body is not as strong as it was a year ago. Lemtrada has really taken it’s toll, and I don’t feel as good physically, mentally or emotionally this time around. I was hoping my body would be stronger and my symptoms would be less severe, but unfortunately that’s not the case. The spasticity in my legs has gotten worse, and my overactive bladder issues are still a real pain in the ass (literally, since the implant in my butt cheek isn’t really doing it’s job). After hearing from many neurologists and fellow patients, I now understand that some people sail through this treatment and some people don’t. Unfortunately, I haven’t been sailing much.

For example, I’ve been preaching to patients the importance of hydrating days before their treatment to help minimize the side-effects of the Continue reading

Some”ONE” with MS

They say when you meet someone with MS; you’ve met someONE with MS. Each person that lives with the disease has different symptoms and reacts differently to treatments/therapies. That’s important to know. A lot of people who I meet tell me about their Aunt who had MS, so they expect me to look like her (maybe she was confined to a wheelchair most of her adult life). When I don’t, it’s confusing to them. Or, I get, “But you don’t look sick”, because I’m walking OK right now, and most of my current symptoms are invisible (but chronic).

I’ve written about the struggles I’ve had with my bladder in a previous blog post titled I Really Need To Pee . It was a good overview of how MS affects my ability to pee (or not pee) when I need to. Continue reading

Tagged , ,

ONE MONTHLY LAB VISIT DOWN, 59 TO GO!

It’s been four weeks since I started my Lemtrada treatment, which means today I went to the lab for the first of my monthly blood and urine tests.

While I was peeing in a cup, I realized I should share a little of what I’ve gone through over the last month. The recovery was pretty tough at first, but I think I’ve turned the corner! Throughout the days and weeks I was overwhelmed with all of the love, support, and prayers I received on my Love My MS Life Facebook page. I’ll update here from time to time, but you can like/follow my Facebook page for more frequent updates.

The quick notes below were written on the days mentioned. For five consecutive days I spent 8-10 hours at an infusion center before returning home each night. I spent quite a bit of time over the last month journaling in great detail everything I experienced throughout – from physical side effects to mental fatigue to the emotional roller coaster ride. I’ll keep writing about my journey with the hope that all of my notes and experiences will help others in the future.

 

Tricia Day 3

Day 3. Not a good day.

Day 1 has started. Pre-meds are done and the Lemtrada is flowing for four hours, then two hours observation. Slight headache and fever but happy to be on my way!

Day 2 is a wrap. It was a tough day defined by an overwhelming headache, but I’m holding on to hope! I’m on a gram of solumedrol (steroids) a day as part of the protocol to help with side effects, which explains why my face is so red, hot and flushed – by Friday I’ll look like a tomato.

Day 3 was a doozie! I didn’t sleep last night due to the side effects from the solumedrol. I went in exhausted and then my IV blew. I experienced tightness in my chest, especially when I tried to lay back. We tried Ativan to help ease my anxiety and help me sleep, but to no avail. I also developed thrush in my throat and mouth, which isn’t pleasant. Thankfully I’m getting IV hydration all day so it’s ok that I can’t eat. Hoping to take all measures to get some sleep tonight. I’d heard that it might get harder with each day, but my hopeful self was sad and weepy today. I’m sure it’s the combo of all the drugs – we really don’t know how the medication is affecting my body. I may be weak but I’m fighting.

Day 4 is done, which means my immune system is almost completely wiped out. Jake gave me a big smooch after he dropped me off this morning. It was honestly the best part of my long day. No sleep or appetite and the pain/tightness in my chest and upper stomach is still pretty uncomfortable. I have a prescription for the thrush in my mouth and throat. I’ve had steroids so many times over the years and don’t remember feeling this awful. Feeling my worst now – plan to take a bath, attempt some soup, take my medications and get ready for bed.

Day 5! It only took three attempts to find a good IV. My nurse is the best, she’s got a wonderful bedside manner. I’ve been blessed by so many angels this week. The pharmacist came out to talk about the chest pain I’m experiencing. She said to give it a week or so for all the medication to slowly get out of my system, but to keep in mind I’ll feel exhausted and possibly miserable for a while.

End of Day 5: My 5-day Lemtrada therapy is officially done! While I’m happy to be finished with that part of the process, the post-infusion phase is just beginning. I’ll be recovering over the next several weeks and dealing with a lot of side effects – some of which will worsen. As expected, my immune system is zapped, which means I can’t go out or have visitors. Fortunately, Jake just wrapped up his semester, so he’s around to help his mama out.

Tricia and Grace.

Grace knows I feel like I got hit by a truck.

 

Week 2: It’s the week after my treatment and while I knew I wouldn’t feel great, it’s been tougher on me than I anticipated – both physically and emotionally. Lots of aches and pains along with very little energy and extreme fatigue. I have to avoid people and germs in general for quite a while. I also have to be careful with my diet since I’m at a higher risk for certain illnesses (listeria is a common one).

Week 3: I’m feeling better, but found out the hard way to not push myself. I might have gotten a little over eager about my minor improvement and spent a couple hours doing some laundry and cleaning a little. While I was happy to have the energy to be productive, I paid the price the next couple days. Even though the worst is over, I still need to remind myself to listen to my body and take it easy.

Week 4: This week I got a bladder infection (UTI), a result of my white blood count likely being low and not able to fight any type of infection. Some of you may know that bladder issues are nothing new to me. While this was definitely a setback, antibiotics are helping and overall I’m feeling more like myself every day.

Thanks to everyone, especially those that helped me get through this last month.

Change Is Good

It’s been a while since I posted on my blog. I’ve wanted to, and have had plenty to share, but you know how it goes, life gets busy. So here I am, to give an update about how I’ve been loving (or disliking) my MS life.

After Dr. Chippendale, my neurologist of 20 years, passed away from an aggressive cancer last April, I knew it was going to be impossible for a new doctor to fill his shoes. That being said, I’m doing my research and refuse to settle for a neurologist that doesn’t have a wonderful bedside manner and knows his/her MS. Period. I’ve always preached to fellow patients about the importance of having a neurologist that is not only trustworthy and knowledgeable, but someone they would consider a friend. The relationship you have with your doctor will be one of the most important relationships you will have while battling this dreaded disease.

The last time I was examined by Dr. Chippendale, it was determined that my MS was “worsening”. I knew I had been dealing with some new symptoms Continue reading

Tagged , ,

How I Lost Hope and Found Grace

If you know me, you know that hope is my favorite word. It’s tattooed on my arm, it’s the name of my MS Walk team (Team Hope), it’s in my favorite bible verse (Jeremiah 29:11). It’s also the name I chose for my baby boxer when I brought her home in 2002 at 8 weeks old.

I vividly remember the day that I introduced Hope to my son Jake, who was only 9 years old at the time. I told Jake that I had a big surprise for him, and then walked him into the living room with his hands over his eyes. When we got to the couch, I said, “Open your eyes!” And there was our new puppy laying in a little ball, asleep on the couch. Jake had a look of pure excitement on his face. “Is this Hope, Mama?” he asked. “Do we get to keep her?” He already knew that her name would be Hope, of course.

Baby Hope (8 weeks)

Baby Hope at just 8 weeks old.

Hope was a huge part of my life, and both my son and I were beyond devastated when she died on Jan. 7, 2014, at 11 years old. Even if you don’t have a dog or have never experienced the unconditional love and companionship one has to offer — something I find very therapeutic for MS — you’ll understand why I’m sharing my story of Hope.

Boxers tend to be a little more on the hyper side and stay puppy-like for two to three years, and Hope was no exception. But that only added to her charm. I potty trained her, took her to puppy obedience class with Jake, and all-around adored my “second child.” When Hope was three, we added another baby boy boxer named Baron to our family. Hope went from being like Baron’s mom, teaching him what he needed to learn, to becoming more like his sister and companion. They were best buddies.

Continue reading

Tagged , , ,

Why I’m Sticking to My Therapy

I’ve heard a lot of talk recently about the new oral therapy, Tecfidera, approved by the FDA last spring for multiple sclerosis. It’s the third oral drug aimed at treating my disease.

In one of the many articles announcing the news, the New York Times wrote: “While self-injected medicines like Avonex from Biogen and Copaxone from Teva that entered the market in the 1990s are still used by the majority of treated patients, newer oral drugs are making inroads. In addition to Tecfidera, the other two oral drugs are Gilenya from Novartis, approved in 2010, and Aubagio from Sanofi, approved in September.”

I’m still on my injection therapy, Copaxone, but I consider this new drug to be great progress for the MS world. I think back to 1994 when I was diagnosed; at the time there was only one therapy available. One! I was on Betaseron for over two years before switching to the new Avonex because a once-a-week injection sounded much more appealing than an every-other-day injection. But I suffered from horrible side effects while on both therapies. I felt like I had the flu 24/7, making it difficult to work full time and take care of my baby boy as a single mother.

When Copaxone hit the market in 1999, I was eager to try it. I’d done my research and knew the side-effect profile was much different from the therapies I’d been struggling with for five years. It is a daily injection, which I know a lot of people have a hard time with. But I decided that I would rather give myself a shot every day if it means my body will tolerate it without the miserable flu-like side effects. I’ve been taking my daily injection — or my daily dose of hope, as I like to call it — ever since.

I’m not symptom free, but I’ll be sticking (pun intended) to my injection therapy for now. The oral therapies are new and the proof that they work as well as injection drugs isn’t convincing enough for me. Not yet, anyway. I will admit that taking a pill once or twice a day sounds like a nice change from what I’ve been doing for more than 14 years. But as the saying goes, “if it’s not broken, don’t fix it.”

As an MS patient advocate, I have the opportunity to speak to many others who share my disease. A lot of these patients are newly diagnosed and have no idea which therapy is best for them; it’s always a personal decision for the patient to make with the guidance of his or her neurologist. I encourage everyone to be on some type of therapy, no matter how long they’ve had MS and even if they’re currently symptom free.

Why not do something to slow the disease down if you can? If one therapy isn’t working for you, try a different one. That’s what’s so nice about how far we’ve come in the past 20 years. Patients have a lot of choices now.

But we’re still not where we need to be because we don’t have a cure.

The FDA reminds us of this in its press release about the new drug Tecfidera: “No drug provides a cure for multiple sclerosis so it is important to have a variety of treatment options available for patients,” said Russell Katz, M.D., director of the Division of Neurology Products in the FDA’s Center for Drug Evaluation and Research. “Multiple sclerosis can impair movement, sensation, and thinking and have a profound impact on a person’s quality of life.”

So let’s stick with a therapy that works for us and do our best to stay healthy until we can get that cure.

IMG_3767

My daily dose of hope… errr, I mean Copaxone.

My daily dose of hope…errr, I mean Copaxone.

Reality Check: I Don’t Always Love My MS Life

You probably noticed that the name of this blog is “Love My MS Life.”  I’m guessing many of you have wondered how I could be crazy enough to make such a statement. Who loves living with multiple sclerosis?!

I can assure you that I love nothing about MS. But I chose that name because I love life, and I acknowledge that MS is a huge part of my life. I can choose to hate it or I can choose to accept it and love my life the best I can. So I do the latter. Or at least I try.

MS weighs me down. Some days are harder than others to keep a positive outlook.

MS weighs me down. Some days are harder than others to keep a positive outlook.

But the truth is, there are days and weeks when I don’t love my MS life. There are physical and emotional issues I deal with on a daily basis that most people will never understand unless they live with this disease. Many of these things are invisible to the people around me, which can be frustrating and lonely. So I think it’s OK to admit that I often have hard days. Because I know you do too.

Here are some of the issues that I commonly struggle with. I’m sharing them not because I want to be a downer, but because I want you to know that I’m far from invincible. (Feel free to share your struggles or thoughts in the comments section at the end of this post).

1.  Not knowing. No one really knows what his or her future holds. But the uncertainly that comes with living with MS is one of those things that I never really stop thinking about. Will I be walking in a year? Will I go blind before I get to Continue reading

Tagged , , , ,

Gallbladder, Schmallbladder

Multiple sclerosis takes its toll not only on your health, but also on your wallet. And because it’s such an unpredictable disease, you never quite know when you’re going to be hit with a new round of huge medical bills. I was reminded of this reality yet again in late October, shortly after having finished one of the most exhilarating accomplishments of my life: the National MS Society’s Bike MS Bay to Bay Tour 2012.

I felt so liberated and proud that I finished the 100 miles in two days…despite the rain, wind and cold that we had to endure during the ride to “sunny” San Diego. I felt very healthy, albeit a bit tired and sore, after the ride. Most of all, I felt blessed to ride alongside an amazing team.

Five more incisions/scars added to my belly.

Goodbye, gallbladder! Hello, new scars.

My health took a turn for the worse just eight days later, when I felt pain on the right side of my belly. Thinking I must have pulled a muscle, I didn’t pay much attention to it. It was 100 miles after all; pain is to be expected, right? But the pain got worse, and later that afternoon I drove myself to an urgent care center. The doctor initially thought it was either appendicitis or a cyst on my ovary. After a slew of tests, however, I learned that my gallbladder was sick, inflamed, full of stones and would need to be removed. What?! Where did that come from?! Continue reading

Tagged , ,