12.6.15 – Journal Entry
So today I’m going to finish decorating outside for Christmas. I have to put up the lights. I did the tree and some other things yesterday before I ran out of steam. Alex said he’d come and help me but I think I can handle it. I think I need to handle it. I am already starting to think of myself as someone who needs help. I can’t let that happen.
I’m far too easily lured into helplessness. I guess it appeals to me in some very sick, twisted way. Maybe underneath it all I’ve always yearned for helplessness. People who are helpless are never alone. I love to be alone. Or I did. I have to protect it. My love of being alone. I have to remember how much I love it. And force myself not to give in to the seduction of helplessness.
…Later that day
I started doing the lights by myself. Then I started to get weary so I called Alex to come and help me. It’s looking pretty festive out there. Super bright. Since I can’t have a tree inside I really love the lights outside at Christmas time. It helps me to feel more…seasonal. And festive and hopeful. Christmas has always been such a fun time for spending time with family and giving gifts…even going to church has fond memories for me. So the lights outside make me happy. And I’m glad they’re up. Even if I did take two days to do it. And even if i did have to ask Alex to help me.
I feel a little better today than I did yesterday, mentally speaking. But I’m still kind of…floundering. I guess this is confusing when it comes down to it. I feel like I hurt all over. But then again, so do other people I know who don’t have MS and they just live with it. What makes this a disease that’s any worse than plain old getting older. Maybe because of the degree of pain? Or the weird stiffness. Maybe it’s a matter of degrees. I am struggling with accepting that pretty much everyone has aches and pains. If I ignore them, will they just be there but in the background and not a “disease” I have to accept or own? I suppose that depends on how this unfolds.
If it’s progressive, my understanding is that it will just keep getting worse. But again, getting worse over time. A long time in some cases. If it’s treatable with pharmaceuticals, will I feel better at some point and feel more up to exercising or moving around more? What if I just tried to do that now…I mean, not to the degree I pushed myself to in Florence. I won’t be stupid. But maybe I just need to move around more and see if that helps? I guess that’s obvious. But when your legs feel heavy all of the time, it’s hard to motivate yourself to move around more. I guess I just have to do it anyway…without going too far to the point where I exhaust myself to the point of my legs giving out.
The thing is, I want to stop thinking about it. But I can’t stop thinking about it. I want to pretend it’s not happening. But it is happening so that’s not easy. But it’s invisible. People can’t see that it’s happening. People don’t know what it feels like because you can’t see it. And like I said, everyone has pain. Everyone hurts. Why should I feel the need to have some kind of special acknowledgement that it’s special for me? Why do I feel this crazy urge to tell people? Like I want them to know that hey, I’m not completely nuts! Things are going wrong and there’s a reason why and I want you to know! Why do I feel like that?
I guess it’s just happening and it’s sinking in. And the spinal tap is coming up and that freaks me out more than a little bit. That’s part of it too. Maybe once I have some more direction about what this is and how it’s going to go maybe then I can think a bit more clearly about the whole thing. Maybe.
12.9.15 – Journal Entry
The spinal tap was today. It wasn’t fun. I’ll write more about it tomorrow when I’m feeling more chatty. Tonight? I just feel like going to sleep. So that’s what I’m gonna do.
12.12.15 – Journal Entry
More test results with red exclamation marks are coming in daily. Some of them have the words “multiple sclerosis” on them which probably shouldn’t surprise me by now but still strikes me hard like looking at a bad car accident and not being able to turn away. With each Google search I lose more hope. Which probably means I should stop the Google searching. But I’m desperate for information – some tidbit here or there that could give me some hope for feeling better.
Because I don’t feel better. I hurt all over. My legs feel like lead. Heavy and awkward. They hurt when I stand for too long. They hurt when I sit for too long. They make walking difficult. And moving about awkward. The pain makes me tired. And all I want to do is sleep. But then the pain wakes me up. Soreness in my hips is usually what wakes me as I sleep on my side. And then I flip to the other side until that side wakes me throbbing. And back again. Over and over.
I’m desperate not to feel so bleak and hopeless. But I feel both bleak and hopeless. I feel gray. Like looking ahead scares me. But I don’t know how not to. I’m so very afraid. Plain and simple. I’m afraid. Scared to death. The simple truth is that I’m not sure how to do this. I’m not sure how to live with this kind of thing. And it seems that living with this is the only option since MS does not have a cure. There are treatments – sure. But I don’t know them yet. And I don’t know what they can do for my pain beyond masking it. If that’s even an option.
I’m frightened. And this waiting to meet with the Doctor is making me crazy. And making me turn to dr. Google. Which is never a good thing.
I had a good day today with Lani at a store event but I’d be a liar if I didn’t say that it was hard for me. I’m exhausted physically. And mentally – from trying not to show that I am physically exhausted. It’s not fun. And it’s not cute. It’s just stupid. And frustrating as hell. I want to act as if I’m fine and somehow BE fine. But that hasn’t worked in a long time. So I’m challenged to think of another way.
I hope the doctors can help me. I’m just so tired.
12.17.15 – Journal Entry
I’m scheduled for something called IVSM next week. That will be three days of intravenous steroids on an outpatient basis.
I think this means they give me a port – which completely freaks me out. Then the steroids kick in and supposedly heal the lesions on my brain and c-spine. Dr. Smolar says I’ll feel better as a result. I guess that’s assuming it works.
There are a bunch of side effects that I’m trying like hell to pretend aren’t going to be bad – like weight gain, aggressiveness, acne, sleeplessness, bloating. All things that I really should enjoy a whole bunch. But if it will make me feel better I don’t see any other option. The intention of the therapy is to put me into remission so that I can feel better and hope that I don’t relapse. So. Fingers crossed.
I’m sure it’s gonna suck. But maybe it will be worth it.
12.18.15 – Journal Entry
I shouldn’t stay up late at night. That’s when I get the most scared.
I lay here and look at my arms. Try to move my legs that ache and feel like lead. Are my hands tingling now? Maybe I’m losing my mind. Maybe I’m listening to my body fail. I feel like I can’t relax knowing these lesions are in my body. Breaking things down – maybe even as I speak! I can’t relax thinking about that. It fills me with panic. Maybe it won’t be next month. Or next year. Or five years from now. Who knows how long it will take for my body to fail me. Maybe there’s time for there to be a cure. Maybe someone will discover a miracle that will give me back a life where I’m not laying on my couch at night feeling as though I’m listening to my body fail.
Maybe there will come a time when I truly believe that I don’t deserve what’s happening to me. Maybe I’ll believe, some day, that I deserve a good life without sadness and fear. I’m not sure why I can’t let myself be. I don’t know how I became so convinced that I am basically bad. Bad inside with a decent outer coating of socially acceptable but not quite real good. If it was real, these kinds of things wouldn’t happen to me. Maybe I wouldn’t feel like I’m being punished.
Because the person I need to forgive me, can’t. Or maybe it’s me who can’t forgive me. My body certainly can’t.
12.19.15 – Journal Entry
I was supposed to go to a party tonight at Foody’s – but I’ve been feeling kind of blah these past couple of days. I was worn out from the mere act of grocery shopping. I just made myself some tomato soup and ate a couple of tangerines (yes, I ate actual fruit). Later I’m thinking, I’m going to make some hot chocolate with some christmas cookies. I just feel like taking it easy. So that’s what I’m going to do. That’s not an easy thing for me to do. I mean, in the past, I’d do it, sure, but I’d sit here all night beating myself up for not being better – more energetic or more social or more something than I actually am. And it wouldn’t feel much like a break at all. I’d feel like a loser. Like I should have done something…else. I’m working on not beating myself up anymore. I feel like I don’t have it in me to go to a party – so I’m not going to a party. I’m staying home. Warm and cozy. Watching television and snuggling with my kitty cats. Trying to take all the easy I can before this steroid treatment next week happens and throws all peace and calm out the window.
I’m not sure if I will react to this treatment the way I’m supposed to. It’s supposed to help me get some symptom relief – so I can feel a bit better in the short term. Or that’s how it was supposed to work. My fingers are crossed and I’m trying to be hopeful.
It’s just that it’s been a while since anything related to my health has worked out the way I hoped it would. Every time I feel like maybe things will get better – they’ve gotten worse. Having high hopes about this treatment only means that when they are dashed it will be that much more of a disappointment. Notice I said “when” and not “if” because, honestly, that’s the way my brain works when it comes to me and my tendency to have things go wrong. I know I’m supposed to think positively! I really, really do. It’s just really hard for me to do that. Really hard.
Then there’s the treatment itself. The possible side effects include sleeplessness and irritability, weight gain and bloating, unwanted body hair, acne. I mean, seriously? It could be a list of the things I hate most. I wish I could feel more positively about the entire thing! I really, really want to. But having an IV port in my arm or hand for three days in a row not only creeps me out, but knowing the medication might turn me into a fat, crazy, zit covered mess with insomnia is really not all that appealing either. Then again, the potential for not being in pain, weak and fatigued all of the time is worth trying.
Today? I woke up with a strange pain in my right hand. It hurts when I type. I have to wonder…am I having symptoms in my hands now? Or is this something entirely unrelated…it’s all so complicated. I’m tired of questioning every little thing about my body and wondering if it’s the MS getting worse. And this has only just begun. There’s a long road from here that I need to be ready to go down.
It’s finally cold here – of course, it’s supposed to go back up into the 60’s next week just in time for Christmas. The weather doesn’t make me feel very festive when it’s so warm. But I guess it is what it is. I have to try to enjoy it while it lasts. The cold and snow will probably come. Eventually!
12.20.15 – Journal Entry
I’m doing laundry so I have comfy clothes to wear to the hospital the next three days. Ironically, I’m struggling today to have the strength to use the steps and carry things to actually do the laundry. So…I’m hoping this treatment has me feeling more fit for laundry duty and other duties soon.
I’m not sure how I feel right now. I feel afraid to hope that I might get better. I feel even more afraid to think that I might not. I seem to be getting worse each day with a not-so-terrible day in between every now and then. The pain in my legs is terrible. Mostly in the mornings when I have to unfold myself from bed and try to walk.
It’s scary to feel so…limited. I’m tired to my bones almost all of the time. I think I’m sleeping – but I’m not sure I’m sleeping very well. I wake up because of soreness in my hips or because I have to pee. I have to reposition and go back to sleep but I’m not sure that I’m getting the best rest. The treatment is intended to help me to get some relief from these symptoms. God! I hope it works.
I am still struggling to take in that I actually have a chronic disease. I mean, it doesn’t feel real to me. And at the same time, the pain and weakness I feel forces me to acknowledge that it’s definitely real. And I can’t ignore that something bad is happening to me. I just hope this treatment gives me enough symptom relief that I can forget it for a little while.
12.21.16 – Journal Entry
So IVSM Day One. Completed.
As expected, I am ravenously hungry. I could eat one of these cats, I’m quite certain. And I’m also super buzzy – energetic and wired like I haven’t felt in years. It’s wild.
I have finished the laundry, emptied the litter lockers, cleaned the spots on the rug – and that’s only what I’ve done so far! After I feed the cats I’m gonna change the sheets on my bed, wash my comforter, clean the kitty fountains…And other things I can’t think of right now. But all of the things! I’m gonna do ALL OF THE THINGS!
I believe I am manic. Or maybe this is what it feels like to feel human for the first time in two years. I’m walking better already. Maybe it’s a placebo effect but whatever it is, I’m going to enjoy it for as long as it lasts. And hope it lasts really, really long time.
And in other news, Nancy Wood came with me to the treatment today. Nancy. My old high school friend who used to be my secret BFF because I wasn’t really cool enough to be in the cool kids group she hung out in – but we had this abandoned ladie’s room in the school cafeteria that we used to hang out in and call “B&N’S Office.”
Anyway. She and I are in touch again because of Facebook. And it’s really amazing to me how people just are there for you even when you don’t really have any real reason to expect that kind of thing. We talked through the treatment and it helped pass the time. I wasn’t sure how I would feel having someone there. I thought it would get on my nerves. But it didn’t.
We talked a mile a minute (Nancy talks so fast sometimes it’s hard to understand what she’s actually saying but somehow I can). When I got the metal taste in my mouth that they told me to expect, she immediately ran and got me lifesavers. I mean, it was a small gesture but it helped a ton! So she’s coming again tomorrow. I’m kind of…well. I’m touched. And it might be the manic ‘roid girl talking, but it’s kind of amazing how people can be so awesome when you need them most. I ate a breakfast smile at Eat-n-Park afterwards and she just had cappuccino and talked to me. I was truly grateful.
And tomorrow is another day. Let’s see what I can clean next.
12.22.15 – Journal Entry
It’s bedtime. Actually it’s way past bed time. But this newfound energy I have has kept me alert and active.
I got more done in this one day than I’ve done in weeks. I purposefully stopped so as not to push myself too far. But it was a remarkable change.
The steroids? They’re doing their thing. God I hope it lasts. If I have symptom relief after this treatment, I’ll be the most grateful girl in the world. And I’m already pretty damn grateful.
12.24.15 – Journal Entry
Christmas eve was super chill this year. I didn’t eat too much junk. There weren’t too many presents. It was actually borderline quiet. I kind of liked it. Tomorrow will be a long day at Gina’s so a quiet prequel isn’t unwelcome.
I’m still feeling pretty good. I’m transitioning to the oral steroids today. Took my first three doses of Prednisone today. I’ll be taking that for the next ten days. I have some preparation to do before my doctor appointment on Dec 29 with Dr. Scott. I’m happy to be feeling so great. I’m scared that it’s going to wear off. I’d forgotten what it felt like to feel good. It feels so good to feel good. I’m going to be very sad if it doesn’t last very long. But I’m trying to be hopeful.
I’m about to hit the bed and get a nice long night of sleep. I have to be at Gina’s tomorrow around 11:30AM. It makes me remember the days of sleep overs with Gina’s youngest son, Rocky, and getting up at the crack of dawn after a shitty night sleep in his twin bed while we waited for Santa.
I miss those days and I don’t! It’s not as much fun without kids on Christmas. But it’s a different kind of fun, I guess. A quiet kind of fun where you actually get to snuggle up in your own bed when it’s over and sleep soundly thinking about how grateful you are to be home in the best bed ever with your kitties.
It’s also 50 degrees tonight in Pittsburgh. To say it doesn’t feel like Christmas would be an understatement. I think tomorrow is going up into the mid 60’s tomorrow. I didn’t even wear a coat to Meem’s tonight. It’s strange. I miss the cold. I know I’m in the minority! But crisp, cold weather and maybe even a few flakes, helps me feel more in a holiday state of mind.
But so be it! It was nice to load up the car tonight without freezing my butt off. I guess there’s a silver lining to open windows in December.
12.25.15 – Journal Entry
It was a nice Christmas. Really nice. Everyone got along. Everyone was kind to each other. Everything was good. I’m exhausted and full to the gills but wondering if I’ll be able to sleep. I have an entire day free tomorrow and I’m really looking forward to some nothing. I need a day or so of just…nothing.
I still feel pretty good but not nearly as great as I felt while getting the IVSM. My legs were a little stiff today. A slight bit shaky. I’m guessing the oral prednisone isn’t as potent an experience as having Solu-Medrol injected straight into my blood stream.
I’m trying not to worry. But I’m also trying to pay attention. I need to be prepared for the appointment on Tuesday so I can give Doctor Scott accurate info on how I’ve responded. Dr. Scott is supposed to be THE guy in town when it comes to MS. So I feel lucky to have made this appointment so long ago (before I was even diagnosed) because now I feel like I am in the best possible place for my care. My feet are a tad numb again today. I’m trying not to let any of this get me down. I just have to be aware of it.
I guess that’s going to be my balancing act. Like a diabetic, in a way. Paying attention without letting it take over. Being aware without being obsessed. Taking care of myself but not thinking of only taking care of myself. I also have to live.
After I made others aware recently of what’s happening to me via Facebook, I’ve been blown away by how amazing people are. From just kind words, to sincere expressions of support and even donut delivery. I didn’t do it for any of those reasons.
I just needed people to know. I just needed to be open about what this means to me and how I’m dealing with it – or how I’m trying to deal with it. I need to be up front that sometimes I’m just not going to be…as ok as I normally am. And that has to be ok. Just like it has to be ok for anyone else. Maybe that’s what I had to do for myself to think that way about myself. I have a disease. But I’m not any different from anyone else. I just have a reason for feeling shitty from time to time. Some people don’t have that – they just plain feel shitty and they don’t know why. And they beat themselves up for it. And that’s awful too.
Merry Christmas 2015. I guess this is a new phase of my life beginning. I guess there’s no way to avoid it. But there’s also no letting it take over.
12.29.15 – Journal Entry
Tomorrow is the day. The big appointment with Doctor Scott. I’m nervous like I’m going to a job interview for the most important job of my life. My sister told me her friend told her he has terrible bedside manner. I suppose that intimidates me too. I made a list of questions. So I don’t get flustered and forget anything. It’s so strange how this makes me feel. Like I’m going to see the wizard. And I hope he can give me a working cervical spine or brain or something. Magical.
I can’t shake the feeling that this is going to be bad. I read the symptoms of PPMS (primary progressive MS) and it kind of aligns with my experience. But it also doesn’t. And I’m afraid to hope for the best. Because if it is the worst? I don’t know why it seems better to be prepared than to be colossally let down. I guess the bottom line is I still believe that mostly bad things happen to me. Even as I write those words I feel ashamed. I’ve been so fortunate in so so many ways! What a fucked up thing for someone so lucky to even think, let alone say. But I don’t feel lucky. Ever.
I suppose I should work on hope. Hope would be a positive change in my general demeanor. Maybe once I stop believing that I’m inherently bad I can allow something good to occur. Maybe?
…Later that day
I liked the Great and Powerful Oz. He was direct. Very soft spoken. But I could tell I landed in the right place. He’s the guy. Obviously. He answered all of my questions and confirms most of my research. I need to start treatment before we determine what sort of MS I have. He said there’s no reason not to be optimistic. The fact that the steroids have me feeling pretty good is terrific. By the time they wear off in a month or two I will likely be on the drug he wants to start me on – which is a once monthly infusion treatment. There are, of course, side effects and risks but the truth is? I’ve decided that I’m more of a gambler than a play it safe patient. If it might work – and if the chance of something really bad happening is one in ten thousand (which is what he told me) then I’m in. Let’s do it. I want a shot. I’d rather try and fail than not try at all.
He also told me my weight and exercise should improve. He wants me on a high protein/low carb method of eating. He said the exercise I need to be doing is walking. Not necessarily on the tread mill but out in the world. Ideally for at least one mile at a time. He said was ok to walk slow and carefully. But walking is what I have to do. It’s also one of the best ways to monitor my progress or lack thereof. If I have trouble walking, or walking gets worse, things probably aren’t getting better. So that’s not great news but not a surprise. I have to walk more! Things could be worse.
I’ve already been on the protein kick (with a generous side diet of Christmas cookies and homemade candy) but that has helped my sugar cravings to decrease a tad. I mean, enough so that I noticed. I guess I’m hoping that this will be like the last health effort I made – when I was afraid of diabetes. I have to make the effort. Because, well, this is about my life. My mobility. My ability to be independent. Those are serious things. So I will give it a serious shot. I don’t see where I have much of a choice.
I’m truly just so relieved that I feel like I’m in the right place with the right Doctor. That, to me, was my biggest concern. If I got a bad vibe, I was going to be super disappointed. But I got a great vibe.
In fact, I’d say it couldn’t have gone much better. I’m putting myself in the hands of Oz the Great and Powerful. And it feels like the right place to be.
12.30.15 – Journal Entry
I’m trying not to avoid noting that my legs feel funny again.
Not as bad as they were before. But I’ve stumbled a few times today. And my knees felt weak a couple of times. I don’t have any of the usual muscle soreness or fatigue really (well, some fatigue that I’m blaming on the fact that I took a sleeping pill last night that Foody gave me and dude, that pill was amazeballs).
I’m not allowing myself to get overly concerned or panicked. I just have to note it and be aware. Maybe the steroid effect is wearing off now that I stopped the prednisone. Maybe this is just how it’s going to be.
I guess that will have to be ok.
12.31.15 – Journal Entry
Numb feet. Leg cramps at night. Yep. I guess it was good while it lasted.
1.1.16 – Journal Entry
It was a super quiet and chill New Year’s Eve last night.
I didn’t even leave the house to go to Gina’s until 10PM. We did fondue. We said happy new year. Then I went home! And proceeded to stay up until 3am watching Jessica Jones on Netflix. Sleeping until 12:30PM just seemed like a natural thing after all of that.
I’m definitely having stiffness and soreness at night again. My feet are totally numb. Pain in my back last night while doing dishes at Gina’s…I’m planning to send an message to Dr. Scott to fill him in and hopefully get things moving quicker with my maintenance drug plan.
Once you’ve had the experience of feeling better, you kind of don’t want to go back. And I suppose that’s the rub of this damn disease. You will feel better, in theory, along the way. But then it comes back. And you go back and forth and back and forth…forever. I keep telling myself that this is truly no different than what any other person of my age feels. Everyone has bad days when they feel like shit. Everyone has days when they feel like they could take on the world and win. I just have a reason for it. I know its name.
You could argue that’s better than the alternative.
1.5.16 – Journal Entry
Monday wasn’t so bad.
Tuesday is so much harder. I just want to stay in bed.
Also, I’m going on steroids again today. Mega dose. Should be super fun. But Doc Scott thinks it will get me back to feeling human again. So I’m willing to give it a shot.
Wish me luck.
1.9.15 – Journal Entry
I did two more days of steroids…and felt pretty ok. But as of today, I’m having symptoms again. My thighs specifically feel odd. Weak. Shaky. Energy is low. I forced myself to go to Pilates today. I’m glad I did, because Cheryl my instructor was so sweet and I’m sure it helped me in the long run. I just felt so…blah. But I ran a few errands and was planning to come home and take down the Christmas decorations outside but then decided to change my plan and just go home and relax. It sucks to feel so…limited. Doing basic things sometimes is just too much. So I have to choose to do nothing. Or choose to do something less physical like coming home and writing. I have to constantly remind myself that sometimes I’m just not going to have the energy or strength to do basic things. And I have to let that happen and not beat myself up about it. But damn, that’s hard.
Beating myself up seems to have become a skill that is hard to kick. I’m so used to feeling lazy, or not worthy, because i don’t feel up to being as active as I wish I could be. I used to tell myself the only reason I couldn’t keep up with other people or master things like walking for exercise or becoming a runner or being great at yoga or pilates was basically because I didn’t try hard enough. Or I’m basically not good enough. Or something. But in reality, there are reasons I can’t do some of these things as easily as other people do. It’s not easy for me to admit that. But what’s even harder is knowing that I can’t let myself off the hook entirely either. I have to find a way to keep trying without wearing myself down. I have to try but not try too hard. I’m not good at this kind of thing. I’m not good at knowing how hard is hard enough. The truth is? I prefer easy. I always have.
I have a big week at work next week and I somehow have to muster the energy to get through it. Our new CEO is in town. So I’ll have to entertain him and clients at dinner on Thursday night. Have the energy to spend entertaining him in the office all day…try to be my old self. Or at least more myself than I’ve felt a lot of the time lately. It all makes me feel more than a little bit overwhelmed lately. I can’t deny that. And it makes me mad.
I also find it funny that I would have thought having an excuse to take it easy would be like heaven for me. The god’s honest truth is, I am not a crazy active person. I like to be still. I like to read. I like to watch TV. I love to sleep.
Why, now that these are things that I have to do and not just things that I want to do, do I feel the need to beat myself up for actually doing them? Why can’t I ever just let me be? I seem to be so sure that being me isn’t enough to be. Or isn’t right to be. Or something.
1.11.15 – Journal Entry
I went into the office today for the first time in a few days. Of course, I had to shower this morning so I didn’t arrive until 11:30AM, so it’s not like I killed myself.
But my legs were really shaky today. They feel super weak. And I hate the feeling of how much effort it takes me to just get from here to there. And around from place to place. I got home and had to drag a ton of trash outside, feed the kitties, change the sheets (I was committed to flannel sheets tonight since it’s finally cold enough to enjoy them), then I had to throw in a load of laundry and scoop the litter…by the time all of that was done, I am kind of spent. I have pain in my lower back and neck. And I just feel so damn tired. I crawled up the steps to the second floor, on my hands and knees.
My friend Cathy said I need to stop trying to do everything at once. That maybe that was a bit much for me after working all day. I guess she’s right. It’s ironic really. The truth is, I am not one for pushing myself too hard. I like to take it easy! Go slow. I don’t like to bite off more than I can chew. I like to ease into things. Now all of the sudden that my body has a legitimate reason to need to take it a little easy, I resent the fact that I need to take it a little easy. I mean, I could have probably gotten away without doing laundry tonight. But I wanted to have clean yoga pants for Pilates tomorrow, so I really wanted to get at least one load of blacks done. And the flannel sheets! I really wanted those flannel sheets tonight…
I heard from the Tysabri patient services people today. They called to explain the process from here. And to make sure I understand what is involved in the infusion and what to expect. They also wanted to make sure I knew that my co-insurance was probably going to be a ton of money. I have a $500 deductible and since it’s a new plan year, it’s probably going to cost me that plus 10% for this first infusion. I guess that just means my deductible will be paid for the year and it will only be 10% from here on out…but still. That’s a lot of cash. I guess it’s a good thing I have my flex spend account set up.
Also, David Bowie died last night. I know. It’s insane that a complete stranger dying would have any effect on me whatsoever. But it made me incredibly sad. I guess I just think he was a rare, special creature. Truly blessed. So talented. And an amazing human being. Losing even one of those breaks my heart. And of course, I can’t stop thinking about Iman, his wife. Every time. I can never stop thinking of the wife. Going from wife to widow is a harrowing thing no matter what the circumstances.
So there you have it. I think tonight I’m going to just toss the load in the dryer and go to bed and read a while before I fall asleep. Take it easy! And try not to resent it.
2.2.16 – Journal Entry
Steroids. Take three.
Two 500 mg doses in. I’m already starting to feel better. If a little crazy. Such a catch 22.
Got rejected officially for my Tysabri. Dr. Scott is on it. Or so he says. I’m officially frustrated.
My day was interesting and I have things to share. But I’m gonna go to bed now and read a bit. I will share tomorrow. Tonight I just feel like a distraction may be more the ticket.
And so I shall read.
2.5.16 – Journal Entry
I got approved today. And I was so relieved. I was happy! Thrilled even. Finally I can start finding out if this treatment will help me feel more normal. Get me to remission. It felt good.
Then, because I’m me, I had to google “side effects of Tysabri.” Because I’m an asshole.
So yeah. I guess happy is relative? It’s all so complicated. I guess you just hope that the good outweighs any bad? I guess there’s a lot of hope involved. As we know…hope isn’t my specialty. I guess I have to work on that. And figure out how to get back to feeling happy. And not afraid.
2.6.16 – Journal Entry
I want to be happy and energetic and hopeful. But I don’t feel that way.
Today I tried to stay in bed. But the sun is shining so bright that it made me feel like I had to get up. Even if it only meant I went outside to drive through McDonalds for a McNugget meal. I’m bloated and swollen. My legs feel weak again. As do my arms. I did a tiny chore today – I put away the shoes strewn all over my dressing room floor but my arms and back get so easily tired it just made me mad. I want to be happy about the potential for this drug to help me. I want to let myself be hopeful. But I can’t seem to get myself there today. I just keep sitting here wishing it would rain. Eating like shit. Not taking care my myself like I should maybe just because I don’t feel like it right now. I just feel like doing nothing. It makes me feel ungrateful. I should try harder. I am also getting to the point where I’m over the “shoulds.” Maybe I just should do whatever the hell I feel like doing right now and if that happens to be nothing then nothing it will be.
I also feel like my period may be coming. The thought of bleeding like a stuck pig for a week and a half also makes me want to do nothing. You could say that every little thing is getting to me today. I just feel like sleeping. But the sun keeps shining and a girl has to eat. Even if it is just chicken shaped parts dipped into sugary sauce. Ironically, I feel like taking a nap. I’ve been conscious now for almost three hours. I kept waking up in the night last night to check to make sure I wasn’t bleeding all over the bed. I hate that I don’t know when it’s coming. Last time I woke up with pajama pants bloody and a spot on my favorite sheets.
Hope is a scary thing to me. When I feel it, it feels like a threat. It feels like it’s waiting to laugh at me when it lets me down. I want to hug it and hold it close and let it make me feel better. But it just makes me feel unsafe. Thinking the worst becomes a more comfortable scenario. Then you don’t feel so deflated when hope fails.
I might just take that nap.
It’s 9:15pm and I gave up. I’m back in bed. Tomorrow? Tomorrow I will do better. For today, I’m calling it.
2.10.16 – Journal Entry
Tomorrow is Infusion Day.
I’m trying to be excited and not scared to death. I have so much hanging on this treatment. I’m so desperate for it to work. I know nothing will be instant. But I can’t help but wish that somehow I’ll feel better just because…well. Because I’m desperate to feel better. I’m tired of waiting for this constant torpor to lift. I’m ready to shift out of neutral.
Then I remember…”PML is a brain virus that usually leads to death.” They say it at the end of that damn commercial that runs a thousand times a day. I can’t let that enter my brain (pun fully intended). I just can’t. Screw you, PML. I’m not letting you ruin this for me. Because tomorrow is Infusion Day.
And I’m gonna feel better soon. Because I have to.
2.12.16 – Facebook Post
Instead of pissing people off with my political rantings, I’m feeling the need to share some musings on my first infusion.
Musions on the Infusion? Maybe it will become a regular thing. Who knows?
But today was a big day for me. I’m finally moving forward. I’m finally not waiting for someone to deem me worthy of treatment…I’m getting treated! The thing is…it’s just not that easy. It’s all waiting. Waiting for symptoms to change. Waiting for drugs to take effect (this one could take up to 6 months before I get any relief, or so I am told). Waiting to see if something more terrible could be brewing. PML, y’all. They aren’t taking any chances that someone might somehow MISS the fact that these amazing drugs could also amazingly kill you with a deadly brain virus – they call me daily to make sure i know. I KNOW. Thanks. That’s helpful.
The people at the infusion center? They are a special breed. They listen. They look you in the eye when they talk to you. They understand. That sounds so easy but it’s not when you’re dealing with something so elusive and hard to pin down like MS (and lots of other autoimmune diseases i would guess).
It looks like the chemo room you see on Grey’s Anatomy or in movies. You have your chair and your rack and you get comfy and they stick you. As gently as possible, of course, but there’s gonna be a lotta sticking me in my future. No, not the good kind.
Everyone knows everyone. The lady that was there with me today has been getting infused with Tysabri for almost 7 years now. She was cute – she had her exercises she does to help make it easier to find a good vein. There is such a thing as “good” veins! Color me informed. She told me her main concern was telling Dr. Scott that she wouldn’t take this drug if it meant she couldn’t have her two beers each night. Her husband is a rock and roller, she says, and she likes to listen to him play and drink her two beers. She said she wasn’t giving up her two beers and she laid that right on the line with Dr. Scott. I think he listened to her. I would have.
She talked about how before Tysabri her husband used to play funny games with her to make sticking her with interferon each week less…icky. So the fact that they don’t have to play those little games anymore was a big plus for her. I could totally understand that. I would have to pay one of you people to come to my house and shoot me in the thigh with a needle and I cannot imagine there would be many volunteers for that job. I would not be an easy weekly patient.
She had a cane. She didn’t seem phased by it at all but I was. I cannot lie. That cane may haunt my dreams tonight – along with the myriad of walkers, stand-ers, lean-ers and other things that had accumulated along with the people in the waiting room as my friend and I left the Infusion Center early this morning. A whole lotta people! With a whole lot of assistive devices.
There was also talk of long term disability. And what happens when you have to face that you can’t do things that you used to do before. Let’s just say I’ll be focusing on that not being my issue – at least for the short term because thinking in terms that are any longer than short for me right now is just not a good thing. I can scuttle down that rabbit hole right quick and you might not see me for a good long while, as I dig myself out.
I guess there are many lessons for me to come. A lesson in…not thinking the worst all of the damn time! I’ve mastered the fine art of acting like a bubbly, happy girl while thinking the darkest, least positive, most horrifying thoughts you can imagine. That has to stop. I think it’s a symptom of young widowhood that I need to put in my past. Holding on to the idea that you think you might actually be cursed is self indulgent and stupid. Gotta work on that.
Also, maybe there are worse things than assistive walking devices. I mean, I know there are. I’ve seen them and read about them on these pages from the likes of many of you. I have to remember that it could always be a lot worse. I am lucky. I am so so lucky. Remembering that is going to be a major goal.
I have to remember that there are so many amazing good people in this world – the ugliness I’ve seen all over the Interwebs, these past couple of weeks when it’s been my constant companion, will not win. It just can’t. There are too many truly good people in this world. I’ve been meeting them lately and it’s kind of fun.
And finally, even a big burly FedEx guy blushes when a lady in scrubs calls him “Sweet Pumpkin” – especially when all the other ladies in the room jump on the bandwagon and call him Sweet Pumpkin too just cause it’s fun to see a big guy blush. Blushing FedEx guys are super cute.
And those, my friends, are my Musions on Infusions for this…Day One of my treatment. The first of many days to come. Special shout out to Michele Lewis Boyd for being my Infusion Chauffeur and Friend to the End. Quality time while being infused is underrated.
2.27.16 – Journal Entry
So I fell on my face today on my way to a meeting at a restaurant with some coworkers. I’m gonna have a nice bruise. A pretty sizable lump.
My legs feel worse than they’ve felt in a while. I’d be a liar if I didn’t say this is scaring me to death. I really hate falling. I hate it so much. It makes me really sad. And embarrassed. And maybe a little bit angry, if I’m honest. I just wish I didn’t do it so goddamn often.
I keep wanting to hope that this is one of those “it gets worse before it gets better” kind of things. Mainly because I’m too afraid to think anything else.
What if this is just going to keep getting worse? What am I going to do if that happens?
For now? I’m going to just cry myself to sleep. And hope tomorrow is a better day.
2.28.16 – Journal Entry
It’s a beautiful day. I’ve seen several posts on Facebook that said “get outside” that instantly made me feel guilty for just getting up at 1pm. It’s a lot of pressure to be more active. More out there. More alive maybe? When all I feel like doing is sleeping. The window was open in my room because I got super warm in the night so there was a breeze and sun coming through the curtains – and somehow. That felt like enough for me. I know it shouldn’t be.
But there I go with the shoulds again. I’m not sure what I should be doing when my body feels like so much junk. I decided a shower would be a good idea. So I’m doing that first. Then maybe I’ll take a walk around my house before I go to my mother’s house for our Downton gathering. Maybe I can do that without giving myself another black eye. Maybe I’ll just drive around with the top down. That has to count. It has to make me feel better.
I need to stop with the shoulds. It’s not easy for me but I think it might be necessary. Maybe I need to take a break from the social media. Shocking thought since at times lately social media is my best connection to the outside world. The healthy world full of people doing fun things. Without them, maybe I’d really give in to the nothing and wither away. But with them I beat myself up on the daily. I need to figure out how to not let them get to me. It’s not real. It’s just people trying to be…interesting. I have to remember that.
2.29.15 – Journal Entry
I worked from home today and decided that I wanted to watch a movie once I got some things done. It’s one of the movies nominated for Best Picture – and I had read the book on which it was based a couple of years ago. It’s called Room and it’s the story of an abductee who is held captive in one room, actually a tiny outdoor shed, where she is kept alive and repeatedly raped by her captor. She eventually has a child who knows nothing of the outside world. He has lived his entire life in “room” and believes that outside the only door he has ever seen lies “outer space.” The mother eventually concocts a scheme to escape where she pretends the little boy is dead and the captor takes him away in his pick-up truck – after which he escapes out of the back of the truck. This leads to his mother being saved and the both of them going to live with her parents in a house not far away.
The thing that hit me when they showed the mom living in her mother’s house with her son is that the couch pillows in the living room scenes are the same floral upholstery I have on MY couch. Which got me thinking about how that was probably not the best movie for me to be watching after spending so much time in my house over the last couple of weeks. And then the one day that I did venture out, I fall on my face and give myself a terrible black eye and other head bruises. It’s all a bit of a conundrum. I feel like shit so I don’t feel like doing anything. I’m afraid to fall down again so I’m kind of afraid of just pretending to be OK. But staying home and actually not seeing other people makes me feel a little insane too. So there’s really not a great solution.
Add to that that I am fat and bloated both from the steroids and from my general inability to stop eating cookies by the sleeve. My face is so puffy it doesn’t even really look like my face right now which means I don’t love the idea of putting makeup on it and heading out the door. Some of my clothes just don’t fit me right now which makes me not want to get dressed or be seen yet another time in a big sweater and leggings – because they fucking fit. My boobs are giant and I have a hard time buttoning many of my coats.
I don’t feel like myself. I feel less than myself. I feel like I don’t know what I am if I’m not myself. And it makes me afraid of what happens if I don’t ever feel any better…I mean, this medication will prevent me from getting worse, that I know. But I’m not entirely sure it will address the symptoms I have already. And what if it doesn’t? I’m in pain again. My legs are unsteady and I’m falling down. The fatigue is overwhelming. I sleep a good night then wake up and feel like I barely have the energy to get dressed. Or put on make up. Or shower and get dressed. Any of it. Which leads me to staying home. Which leads the whole cycle to start over again…the cycle where I can’t stand my own face in the mirror.
I mean, the movie was really good. I was glad I watched it. But I also got a little teary thinking about what my life is going to be like. Or the not knowing what my life is going to be life. It’s all so uncertain.
And tomorrow I see Dr. Scott. Boy. I hope he’s ready for this. Because I’m going in with a damn list of questions for that man. Let’s hope he has some answers.