Hi, I’ve missed you; it’s been awhile. And a lot has happened. A lot.
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When I was first diagnosed with multiple sclerosis, I was scared. Terrified, actually. Rewind to 2012: I woke on a regular day about to start my regular routine and head to work. Except when I woke, I was blind in one eye. Blind. So to go back to that word — terrified, I will never be able to adequately describe the amount of panic I had that morning, and because of that, I searched for answers. Answers can in the form of foggy articles and hazy advice from doctors and people that knew someone with MS or that had actually been diagnosed themselves. What I gathered from all the articles and people was the same: MS is a ticking time bomb. I don’t know which word is more scary. The focus on an amount of undisclosed time that will suddenly end, cease. The sound of the secondhand whooshing by, defining my life and what will happen at some unknown point in the future. “Ticking time” . . . or “bomb”? Bomb of course refers to explosives that, when detonated, cause destruction, demolish areas . . . or in this case, people . . . demolish me. So that’s what I learned: There is a bomb in my body that will go off at a time I am not privy to. And I cannot escape it because I cannot escape myself. So, I had to wait.
While waiting, I got more comments from people and read more articles. Many said they were sorry and that things would make more sense soon. While this did help and calm me, the last part filled me with more anxiety: Things will make more sense. Soon. What “things”? When was “soon”? It seemed to be a riddled threat, one I could not figure out . . . until three years later.
Fast-forward to now, current day. I understand what the articles and people meant when saying, “Things will make more sense soon.” I realize I was looking at it all wrong. I saw the “soon” as a threat that something horrible would happen — that bomb would explode — at a point in the future . . . when in fact, it was the opposite. The articles and people meant things — the bomb — had already gone off and that I would get answers as to why soon, now.
Since my diagnosis, I’ve “soon” found out many “things.” Remember, I starting blogging with one goal: To be honest — completely and totally open, despite the dirt that sometimes may be revealed. I still follow this, and blog for two additional reasons: For cathartic purposes, to make sense of what happens in my life, in the world. And to maybe, possibly help. I imagine myself in a different body — freshly diagnosed with MS — and searching searching ravaging for answers then feeling empty and afraid because I could not find exactly what I needed. There were too many paths — that never ended — and I didn’t have a map. Now, I can relate to those people in different bodies . . . and I want to help. So this is me, offering them my map.
I go through that long paragraph to say this: Some medical history I may want to keep a secret, but my desire to decrease fear and worry for others is stronger, so I will lay it out there: I have always had a history of bladder problems, infections, and such. When I was in college, I took cranberry supplements because cranberries are supposed to help prevent infection from sticking to the urinary tract. It mostly worked, but I hate — hate hate hate — the taste of cranberries and later stopped. I then learned to drink an enormous amount of water — like a gallon a day — to flush the ever coming infections. Some days it was easier than others as I’ve never been a soda-or-whatever-other-drink girl and always enjoyed water. However, if I didn’t take those supplements or drink an overly large amount of water, BAM! Bladder infection again. It was only a few weeks ago I learned bladder and kidney infections are problems caused my MS. In fact, some report that a whopping ninety percent of MS patients have kidney problems. That’s baffling! And explains so much in my medical history.
Take a little walk with me; we’re going to veer off this path and onto a trail.
About a year ago, James rushed me to the ER because I just didn’t feel right. I know that sounds like I visited the ER on a whim, but that’s not how it was. It was serious. So serious that the doctors took blood work which showed my white blood cell count was extraordinarily high. The doctors and nurses were confused as to how I did not have a large amount of pain and was able to walk and move as if normal. I was given medications and maybe an IV (I cannot remember), and once they checked my count again, saw it lowered, I was allowed to leave. They said I had a bladder infection, which if you know me is the bane of my existence because it seems everything I do causes a bladder infection — stumped toe, bladder infection; runny nose, bladder infection; and bladder infection just because well, bladder infection.
Oddly enough, I never though much about this emergency visit. It seemed a fluke and so, in an effort to be a more calm person with less anxiety, I released it from my brain and out my ears — Whoooosh! Gone . . . until about a week ago. It was the last day of school and I woke thirty minutes before my alarm with intense intenseintense sharp stabbing pains in my stomach. I ran to the bathroom, threw up several times, and found — to my surprise — the pain returning stronger. This told me two things: One, it was not abdominal migraines, which are severe and debilitating, and I am all too aware of them having suffered since fifth grade to today. Two, the pain was growing, and I needed help. Thankfully — so extremely thankfully — my dad rushed over and drove me to the ER . . . and here, deja vu — I had an astronomically high white blood cell count: 32,000 when a normal person should have 5,000 to 10,000. I was given three IVs, medicines, and six hours later, released. Diagnosis (hold your breath): Bladder infection.
The ER doctor was highly concerned and wanted me to visit another doctor the next day to ensure my white blood cell count was lower. To wrap this side trail up, I went, the doctor took my liquid, and my count dropped to 7,500 — a perfectly average amount. However, that doctor recommended me to visit a third doctor, a urologist, because as she said, if the pain came on that suddenly — with no warning — and was that severe, there could be other problems with my kidneys now or in the future. Therefore, Doctor Number Three, the urologist, was visited this past Tuesday . . . and she determined I have healthy insides that were functioning perfectly . . . and that nothing was wrong — so much of nothing that she said I was misdiagnosed in the ER and that I did not have a bladder infection. She said there are organisms that show up in urine, and I simply did not have any of those organisms (according to the tests done in the ER, which she had transferred there). This was stop-the-world mind boggling. For once, no bladder infection?! Still, the confusion and worry remained so she recommended me visit Doctor Number Four, a hematologist . . . a blood doctor. That appointment is coming up, and I feel much more hopeful because this makes sense to me. MS is an “immune-mediated disease,” meaning my immune system attacks my central nervous system. However, there is a medical debate going on this very second where some doctors believe MS is an auto-immune disease. If this is true, it means white blood cells are attacking red blood cells, believing they are foreign enemies up to no good. Looking at this side, it makes sense that my white blood cell count would suddenly skyrocket — It would be an MS attack, which can come on suddenly and without warning. Anyway, this is my thought, but I’ll let you know what the hematologist says . . .
Back to my beginning path:
I tell this long bladder-infection-or-not-bladder-infection story because I learned all of this. It’s knowledge. It’s part of an answer. It is a past puzzle piece which was labeled “things” (bladder infections) that was put into place “soon.” Answers. “Things will make more sense soon,” and they do. A small section of my puzzle is being pieced together.
Then, a second answer just discovered at 12:00 a.m.: Restless Leg Syndrome. RLS gives people “uncomfortable sensations in their legs, such as throbbing, pulling, or creeping, especially when sitting or lying down, that are accompanied by an irresistible urge to move the affected limb to help relieve the discomfort. The unusual sensations . . . range in severity from uncomfortable to irritating to painful” (according to an article on MS.net). When I made this discovery, I was so elated that I wanted to wake up the world, screaming, “IT MAKES SENSE!” because it does.
When I was little — very little, say kindergarten, my legs constantly hurt. It would mostly start at night, and the pain would be unbearable. Moving my legs, walking — nothing helped. It was like a fire growing in my legs that held one steady deep throb until it spread and grew still. It made me squeeze my legs with my hands as tightly as I could. While squeezing, my pain went to a discomfort level, but the moment I stopped, the throb returned with a vengeance. My parents took me to doctors who said it was growing pains; I was a young girl after all. The pain never went away though. It followed me through middle school, high school, college, even now. Doctors became befuddled, realizing that I had no more ability to “grow” and therefore experience those “pains.” As any parent does when they don’t have help or hope, they become inventive, and so my parents wrapped ACE bandages around my legs until they reached the line of cutting-off-my-blood and okay while I still screamed to make it tighter. Then, they bought me super-duper tight softball socks. We would then wrap the bandages tightly around the socks. Later, we found a pair of compression socks, and it became a three-layer endeavor: compression socks, softball socks, ACE bandages. At some point throughout the night, I would remove my layers and wake feeling better, lines of stitching and stocking material pressed so firmly into my legs it appeared I had undergone surgery. And this feeling — this horrible burning, throbbing sensation — is still unnamed by doctors now . . . unnamed until I learned and gave it a label. Restless Leg Syndrome. In this MS article, it goes on to describe that studies show “the odds of RLS among people with MS are fourfold higher as compared to people without MS.” That’s staggering. But that’s also answers. Another puzzle piece.
I guess this blog is to do nothing more than document what I’ve gone through — for myself and for other people that may stumble across the information when they need it most. If that person is here — scared, worried, anxious — know it is alright. I promise, and I would not lie. However, if taking a leap of faith by a stranger is not enough, do this: Educate yourself. Read, find as much information, talk to people, ask questions, and ask more questions. Never stop asking questions. Get answers. You deserve those answers. Are entitled to those answers. Knowledge is power. Empower yourself, mainly at a time when you may feel so extremely weak. Here’s your map. Good luck.