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Readers discretion is advise. As this is a blog about my struggles with MS, it's also very descriptive of some personal issues that I face. It's something I'm comfortable with sharing, as it's all part of the trials and tribulations of my life , but just be aware that it may not be something you feel comfortable with reading about me. Again, the purpose of this blog is to give some of you insight into the condition, and maybe give other MSers a little comfort in knowing that someone else is going through the same struggles as them.
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Since August 24th, my life has been turned upside down. On the 24th, I expected to go into work pretty relaxed and refreshed after just having 3 days off, but I had woken up that morning with double vision. It had showed up suddenly, as most of my MS symptoms do. Since my official relapse back in January of this year, my symptoms have definitely been kicking me in the butt. It's as if I never totally recovered from that relapse. The episode itself had consisted of vertigo, lower body weakness, headaches, brain fog, extremely achy legs, coordination problems, vision blurriness, and fatigue to name a few. Normally with relapsing-remitting MS, these symptoms go away over the weeks or months that follow a relapse. Mine definitely faded to the point where I could function and go back to work, but they were always there in the background, being a nuisance. I felt that getting through a 14-15 hour day was just getting more and more difficult to do. When it came time to end my day, my body sure told me so. It was as if a computer was being unplugged, and that meant that it was bedtime for this girl! The only saving grace was that as bad a day I had, I could always go to bed at the end of it and reset my body for tomorrow. I always felt best in the mornings once this reset process had taken place. So that's how things have been for me over the past 8 months, that is until I woke up the morning of Aug 24th.
As I said before, I woke up and in the next few hours developed a double vision. It was as if my eyes could see what was straight in front of me but if I moved them to the side or turned my head, my brain couldn't keep up with the images my eyes were seeing. There was a lag in processing the information to my brain. One can only imagine how stomach sick this made me! I could barely walk through my house without bumping into things, needless to say I couldn't drive or work. I waited a few hours to see if it would go away before calling in sick. It didn't let up by early afternoon so I wouldn't be making it into work. I would see what tomorrow brought. Hopefully my body would again reset itself with a good night sleep.
Unfortunately it didn't let up the next day either. It took 2 full weeks for my vision to get back to normal, but luckily it did. Poor Sheldon had to do everything for me, from buying groceries and cooking me meals to driving me around and helping me keep my house in order. There's no worse feeling than the feeling of needing someone to help you with the most basic tasks. Being as independent as I am, I didn't like this at all!
I was able to get into the MS clinic and see my neurologist before the end of August. I already had my 6-month MRI booked for the 29th and the doctor could see me the next day due to my current state. The weird thing about MS is that symptoms can act up if you have any type of infection going on in your body. So if you think you're having a relapse, the first thing the MS nurses get you to do is check for a bladder infection or seasonal flu. Me being someone who gets a lot of bladder infections, it was quite possible I had one. So as I waited for all these appointments to happen, I went to the walk-in clinic to get ma pee tested! Positive for bacteria - it looks like I DID have an infection that I didn't know about - great! The walk-in doctor then prescribed me with a course of antibiotics that I use every time I get one of these infections (like I said, it's a normal occurrence and pretty routine for me now).
So as I'm waiting for these upcoming appointments, something else happens. I have a severe allergic reaction to the mediation that I inject daily for the control of my MS. This has been an ongoing battle with me and my doctors. I've had this type of reaction before, have gone through a process of 'de-sensitization' to the drug, and have been encouraged to get back on it, all to my dismay. This particular evening, Sheldon was staying over cause I wasn't feeling all the best. I took my shot before bed as I always do, and within 5 minutes I became very hot, and nauseated. I was sweating and had chills and very quickly started to break out in hives all over my body. We jumped in the car and drove the 5 blocks to the ER and they admitted me immediately. There, I was a given epinephrine through IV and monitored overnight. At this point, I can't seem to catch a break. When it comes to this disease and my health.... as they say, when it rains, it pours!
So my MRI appointment comes. These are also pretty routine for me, as I've been having them every 6 months since being diagnosed (this isn't quite normal, but since I've changed my MS 'disease modifying drugs' a couple times throughout my diagnosis, they just wanted to make sure the drug is doing what it's suppose to by checking my MRIs more often than normal). I was having a really bad day this day and was super emotional with an intense headache (not to mention nauseous from my crazy vision) so putting me through this whole process of getting into a hospital gown, not being able to find my vein for the dye IV, having to lay through 45mins of the blaring MRI machine while I basically held back tears to stop from moving ("now lay perfectly still, don't even blink or this won't work") was complete torture and a total slap in the face of how sick I actually am. Here's the bruise I got to remember the experience by:
So now that's all said and done, Sheldon drives me to my neurologist appointment the next day. I'm there to discuss my current state of affairs and my results from the day before. After a thorough physical exam and me listing all my new and old symptoms, we look at the MRI scan. She normally points out any new lesions formed and explains what this could mean for my future. This time, she glanced through it without offering to show me or explain any changes. All she said was that my MS has become 'aggressive', that there were many new active lesions on my brain and that my currently medications didn't seem to be helping. She then lists to me 3 ways to proceed from here. I think, "OK great, I still have options!" Boy, was I wrong!
I was less than thrilled by the options she gave me. I was stunned at what she was actually saying! Like, do you hear yourself, doc?! You want me to do what?! In layman's terms, my options were:
- Continue on the current course of medications, supplemented by high doses of the steroid Prednisone once a month to try and keep any potential relapses under control. (Prednisone is the drug sometimes used to speed up the recovery after a relapse.. it's also a drug I can't take while working)
- Tysabri, a once a month infusion that apparently greatly reduces the progression and symptoms of the disease. The down side is that this drug can sometimes cause PML, a rare brain infection that can't be cured. There's no way to screen for who's most susceptible for this infection and there's no cure. If you catch it, you'll die. The chances of catching this virus is 1/400 and after 2-3 years on the drug, your chances increase to 1/40!
- Low-dose chemotherapy. Apparently MS patients benefit from this and it would be my doctors #1 choice for me if I had already had children. This method would greatly reduce my chances of ever getting pregnant. How can I make that decision at my age? It wasn't part of the plan..
Since I'm not quite ready to give up on my dream of at some point having children, my doctor's recommendation was Tysabri, the brain infection drug. I walked out of the hospital in a total trance. I was stuck between a rock and a hard place....
H. xo
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