Since we talked last, I’ve had my second MRI. I’ve seen my doctor for a follow-up/second MRI discussion. And I’ve gotten a diagnosis.
I guess I want to start back before going forward. Start with an apology. I’m sorry I’ve kind of left you hanging. Quite a few things have happened since my last post. The truth is, I even have a fully written post which I completed shortly after Good ‘Ole November… but the next truth is… well, I could never bring myself to post it. It isn’t that I didn’t want to update you on what’s been happening. In fact, I told James I have this feeling… like I owe you. Since this battle began in May, I’ve had an outpouring of support. People sending me emails, Facebook messages, stopping me when I’m out and about… and it’s meant beyond what I can find words to say. So I do owe you because without you, I wouldn’t be where I am today… and I wouldn’t feel as strong as I do today. In exchange though, you’re owed my honesty, the truth about my journey. The truth on my progress. But more importantly, honestness on my diagnosis. Some of you have followed what’s been happening since it began… and it breaks my heart to think I sucked support out of you and in return, never updated you, told you the one piece of this puzzle we all wanted to know — What’s the diagnosis? Do I have multiple sclerosis?
James tried to tell me it’s okay I didn’t keep you all informed after my last post. He said, “Some things you don’t have to share.” True… but this I do. If not selfishly because I’ve taken so much. But also selflessly. When everything started, I cannot tell you how many links, research documents, blogs, articles and more I read online. I wanted answers. So how — in my right mind — can I leave someone who may be like me — seven months ago — hanging? How can I not help them, offer my hand… my experience and tell them about my path, all I’ve learned. Tell them simply this: It will be okay.
Anyway, I didn’t share a word with you since November 15. Part of me wanted to keep this all a secret. Not that anything bad happened right away. I just… I guess I just wanted myself… to myself. Sounds strange doesn’t it? But the full truth is I didn’t even tell James… or my family for a bit (and they probably didn’t know this until I outed myself right now). It wasn’t like me… but I just needed this secret. No one else’s opinions on what I “have” to do. No one else’s facial expressions of pity or anger if I didn’t think the way they did. No one’s anything. For once, I wasn’t asking for something. I just wanted myself. And this secret to be swallowed up inside me. I feel like I’m not making sense, but that’s why. That’s why I haven’t shared the rest of my journey. I knew I eventually would tell all… but until then, I simply was not ready.
Where to start? Let’s go to the beginning. Oh no… Don’t worry — Not the beginning meaning back in May. The beginning meaning from my last post. So below is what I had written… and was just waiting to publish online:
I need to start off with an apology. I want to apologize to Debbie. No, no – Hear me out. I feel bad about how I spoke of Debbie last time… and I’ve thought about it since I wrote. I wonder if Debbie somehow has read my blog post? If so, is she offended? That’s the thing – I didn’t want to offend anyone… and yet, I feel I have. So Debbie, if you’re reading this, I’m sorry for what I said. In my mind, I made you out to be a straight-forth and yet aloof secretary. That wasn’t my goal. I think I was just in an aggravated mood that day and for that, I had to set the record straight.
*Whew* I feel somewhat better… although I still have a silent fear that Debbie has or will Google her name along side “Dr. Thurston” and my post might pull up. James said I wasn’t nasty to Debbie, but at least my heart can rest a little easier now that I apologized.
Moving on, I have a big update for you. H-U-G-E… with capital letters and dashes in between. After I left my nasty voicemail to Debbie, a couple of weeks slipped by. Well, maybe ‘slip’ is a bad word. It sort of ‘rubbed’ by… and I say that because I was aware of the days that passed… knowing any day, Debbie would call to iron out my irate message. And soon, that day came.
The day before Thanksgiving, Debs delivered my holiday cheer by leaving me a voicemail which said my insurance company had approved the second MRI. Debbie said apparently that was how it was supposed to work all along… that in order for this second MRI to be accepted, my insurance simply needed to talk to my doctor. Debbie ended the message saying she was going to be out of the office for the holiday and I needed to call her Tuesday, November 27 when she returned. That’s when I was supposed to tell her a final answer: No or yes to the MRI.
I admit, I listed to the voicemail a few times… for a couple of days. My MRI had been approved. Insurance gave my glaring, scary MRI a huge check mark. The next step was up to me. I had a secret… one I wasn’t ready to share with my family yet. Every time I listened to the message, I would pause after it played. “Did I want to tell someone today?” I questioned myself repeatedly. No. The answer was always no. I knew my family would do their best to make me go… but again, James and I neither had the money (or my anxiety) to put on the line. I was nervous of how this would end… but for now, I felt in control with this secret.
Then it was after Thanksgiving, and I had held onto my secret for about a week. After feeling guilty for my rudeness to Debbie via my blog, I decided I owed her some type of apology – in the form of an answer as to whether I was getting an MRI. I called her promptly Tuesday. She was in a wonderful mood… which made me feel even more queezy… as if she really did read my blog and was trying to make things right between us.
Once I identified myself, she said, “I’ll go through and send in the information for your MRI.” I’m not sure if it was phrased as a question or a statement. I later told James I felt I didn’t have time to think over her comment. It was as if she were asking, “What is your favorite seafood?” when you hate animals in the sea. I wanted a choice, but the way it was worded I felt the only answer I could give was okay… and not ‘okay’ as in yes, I’ll do the MRI… but ‘okay’ as in I heard and understand you. I don’t know. It’s confusing. In fact, I still feel confused. Without intending to, I gave a semi-approval to have a second MRI. I mean, maybe I would have scheduled it anyway… but honestly, I wasn’t sure of my answer yet.
The next morning, the MRI nurses called me. “How about Friday afternoon?” “…This Friday?!” I was expecting weeks – the same amount of time I had to wait before. “…Okay. Might as well get it over with.” And with that, my second MRI was scheduled.
Afterwards, I had to call Debs back. We needed to set up a ‘Dr. Thurston date’… a date where he would have reviewed my MRI and then informed me of his diagnosis. “He can see you… December 4,” Debbie confirmed. “That’s the only day and time I have open for the next several weeks.”
Of course my family is “proud” of me for setting this up. I’m not necessarily “proud” of myself. This doesn’t feel how pride should feel. I guess what I feel is that I’m wasting James’ and my ‘newlywed funds’… not that we even have those funds, but any money that could be saved would have gone in the ‘just married nest.’ Plus, I’m convinced I don’t have MS… so again, why waste money. It’s a dilemma… but there is one positive aspect I’m holding onto. Very, very soon I’ll have that coveted diagnosis. I’ll know what the future holds… and I’ll know whether or not I need to pick up my sword and fight.
That’s that. That’s what I wrote. And I thought that was a “big update”… Now to the real update.
My sweet James came with me to my second MRI. I didn’t even ask — He just knew I needed him and without words or pleading eyes from me, he was there standing tall by my side. Meanwhile, I wobbled in, doped up on four mini-valium-like pills needed to destress myself for that confined little space. I was at least — as advertised — destressed… until they threw a tissy fit. When my name was called, James and I both approached… to which they bickered that they could not let him come through and he could wait in the lobby. “No,” I said straight-forth. “He needs to come with me. I have… problems. I’m… claustrophobic and honestly, you’ll want him there just as much as me because I don’t like MRIs.” I thought that was enough of a reason, a warning… but they didn’t heed it. “It’s okay. He can stay here.” Then she added to me with her back to James, “Come on…” as she shuffled me through the door.
I admit I was huffing and puffing inside, thinking, ‘Oh lady. You’ll believe me soon enough’ and that’s because I was a few minutes from losing it. While I did want — deeply — to prove to everyone that I could do a stupid MRI alone… she rubbed me wrong instantly… and I was in no mood to be ‘rubbed.’ Regardless, she stripped me of all jewelry, told me they were very busy today, and that we needed to hurry. Then she got more forceful, motioning to me — like a heated police officer directing traffic. “Lay down here… Here… Here!” waving to the stretcher-like-devise attached to the MRI. I stood frozen. How dare she rush me when I’m on the verge of a panic attack. How dare she prod me along when I told her point black “I have problems” and “I’m claustrophobic.” How d-a-r-e she… and in between placing dashes on the word ‘dare’… that’s when I lost it. Through angry/nervous tears, I told her I wanted my husband and I wanted him N.O.W. I repeated my issues with being there and began shaking so much I had to lay on the daggon stretcher thing I was trying to avoid. Now it was her turn to stare… at least until I announced I was NOT doing the MRI until she got James. I felt a little better, seeing her run — literally — away to get another woman… who soon had my husband in tow. Just seeing him made my cries reduced to sniffles. Admittedly, I also felt like I (untryingly) got revenge. ‘What the patient wants, the patient should be given. Glad you learned — the hard way,’ I thought… along with, ‘NOW you are behind. If you would have just listened to me, we would be fine.’I still have no remorse. In fact, that stupid woman had worked me up so much that we had to redo the damned MRI in the beginning because “there was motion.” The ‘motion’ part being me… inside my white coffin… with barely enough oxygen to survive… with the Silence of the Lambs-devise on my head… crying. Again. Trust me too when I say I was trying to control myself. The l-a-s-t thing I wanted was to have to redo anything in my death trap.
Long story short, my second MRI was over. About an hour had passed before my husband and I walked out free, wondering what the scans would reveal. That was November 30. Next came the dreaded date of December 4: The follow-up/second MRI review appointment.
Per usual, James and I waited a whole two hours before even laying eyes on my optic neurologist. Moments ago, I had aced all of the nurse’s basic eye exams, proving I was fine and that my 20/20 vision had been restored. Finally, Dr. Thurston. He too went about doing another set of basic eye and muscle reflex exams. Another A under my sleeve. Lastly, the MRI review.
“So you had an MRI a few days ago…,” he started. “And I’ve looked at it a few times. And each time I see the same thing. There is a very small… very very small — about (and here he pinched his thumb and pointer finger together revealing barely any space between them) three millimeters — change. It’s in your brain at the end of one of your nerves. It was only visible with the dye… but it’s there. A change. Again, I looked at your first MRI — the one you had back in May — and this white matter in that location is not there the first time. It is a change… which by clinical definition — if there is a change — it… it means you have MS.”
For a few moments, it was as if someone pushed ‘pause’ on a remote, controlling our environment, controlling us. I bit my lip and didn’t breathe. His statement seemed to hold the word ‘but’ after it… so I waited. And waited. …And waited. It never came. MS? I felt as if I was out of my body, looking at myself and thinking about what he said in this silenced, paused moment. MS?
Dr. Thurston (bless his soul) is long-winded, veeery long-winded. He picked back up, talking in his calming voice. “Now 25 years ago — when I was working in this field — an MS diagnosis called for something else. We didn’t use MRIs to diagnosis. We used real — what was called — ‘clinical’ evidence. ‘Clinical’ meaning not ‘clinical’ with MRIs… but ‘clinical’ meaning real-life evidence. Now what that means is a second episode. If you had two episodes — optic neuritis, like you had… tingling in a limb… clumsiness in a limb — if that happened twice, then you were given a diagnosis of MS. In your case, you’ve had one episode… so technically — clinically — we would say you are at an increased risk to have a second episode in the future, but you do not have MS.” And here he paused. “But we now rely on technology. We do use MRIs. They are now referred to as ‘clinical’ evidence. And according to your scans — because you do have another area of white matter that was not there before… that means it is an MS diagnosis.”
He kept talking… and honestly, I don’t really remember what he said. I know I was telling myself to shake my head, move my hands and feet to make it look like I was paying attention… but I just wasn’t. I pictured holding my hand in front of me, palm facing him and whispering, “Excuse me” then leaving, walking out and sitting somewhere — like the bathroom — to breathe. That’s when I realized I hadn’t breathed for about 15 minutes. But that was confusing. If I hadn’t been breathing, then I wouldn’t still be alive. ‘So I must be breathing… I just didn’t realize it,’ I thought. I took a controlled breath. ‘Yes, I was breathing… but not nearly as deeply as that. That felt good.’ So I did it again. I was thinking about what James looked like, yet for ever fiber in my body, I did not want to see him. I could not see the worry in his eyes… Just thinking about it, visualizing it made my bottom lip quiver, my vision blurry. ‘Don’t cry. Don’t cry.’ I hushed silently. ‘It’s okay. It’s okay. It’sokayit’sokayit’sokay.’ I started thinking about my heart… wondering if he could hear it thudding against my chest. I started thinking how happy I was my parents weren’t there… because of their eyes… their feelings… which still radiated through me and again, I soundlessly tried to quiet the feeling of tears.
James’ question jolted me out of my stance. I’m estimating 30 minutes may have gone by. “What are the types? Of medications?” Medications? Is that what they were talking about? I knew what types — needles. You become a human pincushion. “The four we prescribe are injectable medications,” Dr. Thurston answered. “Some are taken every day. Others, every other day and one once a week. There is another that is done through an IV in a medical facility, but I would not suggest it. That one is done in serious cases because the risks are too high. In most cases, it is fatal.” And here he began talking about case studies and reviews and…
‘Where am I?’ I asked myself, bombarding myself with questions. ‘What’s happening? What’s going on? Why are we talking about fatal medications? Why would anyone prescribe a fatal medication? I have MS? Is this real? Did I ask for this somehow? Did I want this? God? Did I ask for this? Because if not, why did you give me this?’ Tears again… which I was able to catch by concentrating on my nods. One. Two. Three, four. ‘I think it looks more normal to move my hands,’ I thought and so I did. But that hurt so I moved them again. Couldn’t get comfortable. Dr. Thurston was still talking, unbroken.
“And there’s a new medication. It’s a pill — something every one of us have been waiting for. But it’s just been released on the market — literally just out… as in the end of October. So no one knows anything about it. No one knows the risks. I have a stack of papers, clinical studies, documents I will soon be looking through to learn more… but until then, I do not recommend it because we simply don’t know…’
I knew this would be the case. I knew MS would be something that doesn’t have a full-blown treatment yet. Like the millions of people out there with a disease like cancer. They are recommended to undergo chemotherapy… it’s supposed to help, but it only prolongs the inevitable, right? I will still have MS no matter what medicine I take. I didn’t want to talk anymore. I didn’t want to hear about how the medicine is 30 to 40% effective. I didn’t want to have to pretend to listen to Dr. Thurston. I didn’t want to have to know that they don’t know what the future holds. I just wanted to leave. To have a moment — a second — to myself. But I’m too damned nice… so — for the sake of not hurting the doctor’s feelings — I stayed. And sat on the cushiony but not so cushiony doctor’s table.
I may have asked one question during our hour and half chat with Dr. Thurston. James asked a lot… and I only know that because he kept interrupting my silent-mind escape. Not that I’m mad at him. In fact, he made me well up with tears every single time. He was asking questions. He wanted to learn, get information. What would I do without him? It’s true I felt and feel he doesn’t deserve this. He didn’t deserve to sit in a doctor’s office — the day before his weeklong vacation — asking the doctor about his new wife’s MS diagnosis. I felt and feel selfish… for snatching him up… for not allowing him to have a better, healthier wife… someone who could provide him with a better, healthier family. Someone who was simply everything he needed. That’s when I needed to go… to vanish… to leave him here. Because that’s the thing. I don’t care so much about myself, about my health. I mean, sure I want to be healthy and happy… but what I care about more is James. My sister. My family — meaning my family and my new family. My dog. I want them to be healthy and happy… not worrying about me. That’s why a large part of me was angry then… and is angry now. I don’t like that I was brought into this life with this MS… to upset them. THAT’s what hurts. THAT’S what made and makes me tear up.
In the end, through the in-between-chatter, I picked up on the following fro my doctor:
- Many people decide to wait until a second episode to start medication. Partly because it is their own personal opinion and partly because that’s how the first ‘clinical’ diagnosis of MS used to be. And PS–I decided early in the talk I was not going to take medication until I had a second ‘attack,’ as it is sometimes referred to. Now before you start — Believe me, the last thing I need is another lecture. Dear everyone, I know you care. I know you love me. But because I feel bad about having your love, it is sometimes too much. It’s sometimes suffocating. I know you really, truly want me to take medicine now. But please. If you love me. Just let me have this choice. This one choice. Just let me be normal for a bit. If a second episode happens, it happens… and I promise — I promise — I’ll start medication. But for now, listen to me: This change found on my second MRI was extremely, extremely small. The diagnosis of MS using MRIs is not what it has been for years. And lastly, I could have no second episode in my life. So until that may or may not happen, please. Just accept me. Accept my decision not to start taking medicine now. Please. I know you love me… but I need a little bit more time to love myself.
- Speaking of medicine, you apparently “get used to the injections.” It’s just “something you have to do every day… like getting dressed.” I wonder if the doctor has spoken with anyone whose terrified of needles? He equated it to a diabetic having to test their blood-sugar level or get insulin shots. “They get used to it. Ask any of them.” I didn’t have to ask. I already knew. My mom is a diabetic. I know it does become a regular thing — to her and to the thousands of millions of people who are not terrified of needles. I will never find it in myself though to become a pincushion. Just yesterday, I was moving my sewing bag in the closet and a needle — sticking out — pricked me. I cried and cussed. No. I’m not doing injections.
- Because I just recently had an ‘attack,’ the estimate is that my second episode will be equally as minor. Apparently, the attacks start off minor and get more severe. Of course, there is a chance that the second could be severe. “It’s a numbers game” is the term that keeps getting thrown around. “It’s your risk.” Risk is an interesting word. I’ve always been a risk taker… and know what? It’s made me strong. Very strong. I don’t settle for warnings. I don’t settle for fear and worry. I will and have lived — with every risk by my side. I refuse to straddle risk. I’m up for challenges, and I’ll go down fighting each and every time. For the sake of life — of breathing that adrenaline rush. That’s living.
- If and when — and he does expect when — another episode comes, it will more than likely be between six months to two years. And I more than likely, I will have everything restored… like my optic neuritis and my 20/20 vision afterward. But there’s a chance I’ll be left with 80% of what once was. And apparently the more the episodes, the increased chance you’ll be left with ‘residual’ symptoms. The clumsy hand not seeming to hold onto items. The numb, tingling in a leg that doesn’t quite allow you to walk. The worse — an episode with your spine causing paralysis. Episodes and numbers. And risk.
- The medications that are mostly commonly given and used are the injections. They prolong the time you will have another attack and allow that attack to be less severe. As far as what specific types, my doctor recommends Avonex which I believe is the once a week shot. This is recommended because it is just that — a once a week shot. People refer that over daily sticks in the “fleshy, fat part of your stomach. Just one ‘pop’ in the thigh a week.” The second most given medication is Copaxone… and I’m not sure how often you take this shot. There are two others, but these are the most used over a long period of time… and most accepted. The new pill is Aubagio or Teriflunomide… which blunt truth? I’m writing off now because it has not even been on the market a full month. If there’s one thing I am not and never will be, it is a lab rat. As far as the medication, Dr. Thurston was a sweetheart. He recommended me researching on my own to figure out which is best for me. I told him I like research and with that he rushed out of the room and returned with a paper, a booklet and a wide binder-like-trapper-keeper of information. Mine to take home and keep.
- Do not — under any circumstance — take MS medication while or trying to become pregnant. Oh boy do I know I’m opening up a world of questions here, but sorry — this post is only about my medical journey. MS medication can cause birth defects. From my little research and from his talk, there is no doctor anywhere that would recommend staying on this medication while or trying to get pregnant. Yes, one could start taking medication… then stop when they want to try to get pregnant. But. Some medications require a month or more than a month to stop taking before trying. Again risks and that ‘numbers game’… except all numbers point to the same thing. In fact (random but on topic), I was randomly watching ‘A Baby Story’ and the mom was talking about how she has MS and had to stop taking medication while trying to get pregnant, once pregnant and while breast-feeding. There — You should always believe what you see on TV.
- Hell, we’re on the topic of children, let’s just continue: MS is not necessarily genetic… but there is an increased risk that children with parents of MS will have MS. Increased risk being (for example) if a normal child has one in 1,000-th of a chance of getting MS… a child with an MS parent will have one in 500-th of a chance. Again, those are not medical numbers. Just a way to view the chance. In fact, I’m told a parent can have twins and one of the twins can have MS, one not. It is just an increased risk… but not genetic.
And I guess that’s it. After an over three hour appointment, I was given a recommendation of “research the medication,” “let Dr. Thurston know my decision”… and an “I’ll see you in six months for a follow-up visit.”
…I’ve been staring at this computer screen for a few minutes. The little black cursor line blinking at me, ready to take down my thoughts. But what are my thoughts? I don’t know. I’ll start off with I’m not sure I want to post this. I may put it in ‘drafts.’ I know I cannot proof it for errors because quiet frankly, I’ll leave it unpublished. I told James, I just want this to be a secret right now. I know it makes no sense that I take to the internet when I want to keep something quiet, but writing is my form of release. Plus, I’m honestly hoping that if I write everything I think and feel… maybe… just maybe no one will talk to me in person about what’s happened. I just don’t think I’m ready yet. I’m giving you answers and honesty here. I’m pouring my heart out here. Can that — for now — just be enough? Please.
I guess, in my heart, I just want to pretend like this isn’t happening right now. I want to pretend like I had a bad daydream and envisioned this…
The truth is, I’m an extremely responsible person. I’ve lived the life of responsibility having a younger sister who watched, followed my every move. I will always be responsible. If not for myself, but for others I love. So you don’t have to worry about me. TRUST that I will do what’s right. TRUST that I am strong, that I can make these decisions and will be okay. If I need help, I’ll ask — believe me. I’ve pestered family to come to so many doctor’s appointments. I’ve talked truthfully to friends. And I’ve taken to the internet, begging for answers and support. TRUST I will be okay. I love everyone whose stood by me, supported me and raised me up. And I won’t ever let you down. Trust me, okay?
Side note to James: I just want to say publicly again… I love you so dearly and deeply. How I ever — or will ever — deserve you is something I cannot answer. Thank you for being you… always… with me. You are my heart, my mind, my sole. I love you.