Chronicles of Life with Multiple Sclerosis
Currently, in bed, with a starbucks. Only typical. (:
Health wise: I’m better than I was before my last hospital visit last week however not as good as I was when I left rehab over two weeks ago.
So Im filled with mixed feelings: I’m happy I’m better but rather discouraged I have regressed…again.
My walking is what seems to be the least affected. I still get around the house with my arm crutches and wheel chair for outside visits. My legs will buckle or I’ll have a little limp but this is I guess to be the new “normal”.
My arms/fine motor skills are dependent on factors, such as how tired I am, if I’ve taken my meds, etc. It is rather frustrating when you tell your arm “reach for this” and the brain just can’t get the message there. I find myself having to come up with clever ways to do normal things. Example: text mom to help. (: (Love you mom!) I also am still experiencing quite a lot of tremors in my hands when not in “resting” position. This makes it challenging to eat, write, fold clothes, life. But I see it getting better daily.
My speech is probably where I’ve noticed the least progress. One of the things I have always loved to do (since I was about 1) has been talking. To not have that ability is quite challenging. The upside, sparkle side of it is though it has turned on my listening skills. Listening to music, to others, to mother earth, to God, to happy vibes, to whatever it is around me. This I am thankful for.
Fatigue. Let’s just say I slept 14 hours last night. We will leave it at that.
Cognitive. I have noticed change in my short term memory but this is only natural due to where the lesion is as well as due to adjusting to medications. This has been improving.
MS is a challenging disease for everyone that has it. But for me, what has been most challenging is its unpredictability. I have no idea how I’ll feel in an hour, 10 minutes, next week, next month. I’m a planner. Having your life be so “unplanned” is a huge burden for me.
Now, do I sparkle? Well, of course. (: My spirits are high. I am thankful that I can see progress daily that shows improvement. I am thankful I have one of the best MS doctors looking out for me as a patient. I am thankful for the MS Society and all they are doing for me. I am thankful for so many things.
I am thankful I can still sparkle. Which is hard for a lot of people who have chronic diseases. I contribute it all to your support, in whatever way you share it!!
So thank you, please keep it up, and know that I have my good friend St. Therese looking out for you too (all my readers). Religious or not, having people in high places sending you good vibes cant be a bad thing. (:
Have a glorious day, hope for all those that have MS and HOPE FOR A CURE!!!
PS: side note: send some support to my little brother as well. He is at summer camp and we just learned last night that he has second degree burns on his foot due to boiling water being spilled. poor kid. his spirits are high and doctors say its healing nicely!
“when it rains it pours. but you wait and hope for that rainbow”
Too many of us can relate to this. Thank you for sharing your story.
Its one of the things I’m most passionate about, and in some way prompted my starting this blog. We all know doctors are just people like the rest of us, but relegating us to the “its all in your head” file (which SHOULD NOT EXIST TO BEGIN WITH as our bodies and minds are connected) under the general assumption that the patient is more likely “complaining” “in need of attention” etc as opposed to has an actual problem is just disgusting. If a doctor has become so cynical that they feel comfortable judging their patents that way, using things like make up and other momentary, context free judgements, they should probably hang up their stethoscope. Its its own form of malpractice if you ask me.
No, I’m not hating on doctors. I’m also not assuming that many of us don’t have illnesses that are extremely difficult to diagnose. none of us are really expecting our doctors to just “know” whats going on. The issue is that too many doctors come with preconceived notions about their patients.
The process of my diagnosis isn’t all that different than yours it seems. I was so obsessed with school and where my career took me that I ignored some signs, didn’t have a consistent doctor (partly because of assumptions like “well you’re wearing make up so you must not be too bad off”), and I was diagnosed with several different things before the proverbial shit hit the fan so to speak. When that happened, however, my struggle to find a doctor that would take me seriously (even with optic neuritis) was incredibly difficult. Even once I knew what I had my doctor wouldn’t call back, would blame a “history of anxiety”, etc. and ignore flare ups until I’d end up back in the hospital. It took a lot of strength and frustration to get to the point where I said screw this and found a new doctor. So far it seems to be working out with this one.
Anyway, its incredibly frustrating that we as patients get judged as “fine” for struggling through our pain and making an effort to seem visibly normal or positive, or for not being able to struggle through the pain and get to that place thus being “depressed” but assigned as such in a derogatory non medical way. Depression and anxiety are a huge element in a lot of chronic illnesses, so if thats the case then perhaps our doctors should take notice and not treat it as us “whining” (see past post on mind body dichotomy..). More over, sure there are a lot of people complaining about things, but I’m willing to bet that the majority of people fall on the opposite side of the spectrum.
Ok, really my point I swear: Being sick, going to the doctor, feeling pain or confusion, are not fun experiences. We’re not showing up and paying you a gazillion dollars because we’re bored. You may be frustrated with your job, maybe have dealt with people that annoyed you in the past, but stop for a second and remember that we are PEOPLE, HUMANS, coming to you, VULNERABLE and looking for answers. We need HELP, not judgement, and generally we’re more than willing to work with you in figuring out what the hell is going on if you just give us a damn chance. So please, please, don’t make us worry about your judgements, your assumptions, and your cynicism on top of the problems that have built up enough (for too long for many of us because your colleagues have instilled fear and shame in us) that we called you.
Sorry for the long response. I hope its coherent since I’m pretty damn exhausted and achey at the moment. I could stop myself though, It makes me so angry to read about this happening to so many people.
“It’s all in your head.”
The original Post continues here
thank you for sharing your story. I’m so sorry this happened the way it did. Your post is so poignant that I want to post it before I go on a long rant about this. It makes me so mad. *hugs to you*
“It’s all in your head.”
Today I am in really bad pain. The kind of pain that almost brinks on panic…if this gets even a tad bit worse I might end up in the emergency room. My first reaction was to go to my medicine bin (yes, it’s a bin) and dig through to see if I had any left over pain medications from previous hospital stays. I usually have stuff left over because I never take my pain meds unless I REALLY need them. The only thing I came up with was tramadol…I guess that has to do. I take that and get my heating pad and a cup of warm tea and lay in agony trying not to throw up debating, do I call my doctor?
The next thought that always runs through my mind is will he believe me? That’s not a fear anyone should have. But a fear I have never gotten over after doctors for many years would suggest that it was “all in my head”.
I am trying to make a long story as short as possible but there is so much that goes into why I feel this way. Basically from the time I had my colon removed 3 years ago and my diagnosis was still UC, up until this past summer when my diagnosis changed to crohn’s disease I was told it was all in my head. Or some other variation of that.
To them I had UC, my colon was gone, I had a j-pouch. I should be fine and dandy.
In doctors defense I know they can’t really do anything if they have nothing to go on. And I know sometimes our bodies are funny and it’s not easy to find the problem. But that doesn’t mean there isn’t one. I feel like sometimes it’s black and white to a doctor. If they can’t see it then it’s not there. And if you are repeatedly showing up claiming you are having certain problems yet they can’t find a cause they start to doubt your credibilty.
After my colon was removed and I had my j-pouch I had problem after problem. But they were not typical problems one with a j-pouch would have. Inside, I always had a gut feeling (heh heh) that I had crohn’s disease instead of UC. The pain that I was in felt exactly like the pain I had when my colon was inflamed and ulcerated. I would lose weight rapidly and I figured my small bowel wasn’t absorbing nutrients. A lot of other things led me to think it was CD as well.
At first my doctors did a lot to figure out what was causing me so many problems. We would do x-rays, CT scans, scope my jpouch, blood work, etc. Usually they would find loops of bowel that were inflamed but not much more. I understood that they were not finding anything but it started getting to a point where they stopped believing me.
I would wind up in the hospital and they stopped running tests. They would do one x-ray of my abdomen and tell me it’s probably just a partial blockage. I would be admitted for fluids and pain meds and no more tests were done. After a week or two I would go home and start feeling terrible again after a few weeks.
I lost faith in my doctors wanting to help me. When you start out you put all your trust in these people. You want to form a relationship with them and feel like they care about you. When they started to snuff off my pain I started to feel defeated. I knew they did not believe me and that was one of the worst feelings. All I wanted was help. I was there because I didn’t want to suffer anymore. I wanted my life back.
I had one doctor write in my file (without me knowing) that I was seeking pain meds. So the next time I came to the hospital I was refused pain medication until my surgeon came down and yelled at them. I was furious. If they only knew me. I hardly ever take the pain meds I am sent home with which is why I end up with a stock pile. And now when I was there and needed help with my pain I couldn’t get it. I hated that. I was not one of those people who do that and having that in my file felt terrible. (This has led me to another fear and now I minimize my pain and I’m afraid to ask for pain medication).
Another doctor told me I must not be that sick because I had make-up on! ARE YOU JOKING? Again, if they only knew me. I am a silly silly girl who puts make-up on for everything. Even when I am at my sickest if I have to go somewhere. On that day I had someone else pack my hospital bag for me and clean me up and get me all set and the only thing I did was put my make-up on in the car. I couldn’t believe he wasn’t taking me seriously because I put make-up on my face!
Other times they would suggest I was depressed and prescribe anti-depressants or send social workers into my hospital room to “talk to me”. Code for: to see if it’s in your head.
Eventually I stopped calling my GI or my surgeon when I was suffering. I knew that they wouldn’t do anything for me anyway so why go in? I felt like I would never have an answer for the pain and other symptoms I was experiencing. I hated the thought that when I was talking to them about how I was feeling they could be thinking I was telling a lie.
This brings me to this past summer…I was losing weight rapidly. Faster than I have ever lost weight before. I went from my normal weight of 115-120 pounds down to under 100 pounds FAST. Because I was losing weight so fast I tried to eat more than I normally do to stop losing weight. I KNEW that my small bowel was not absorbing the nutrients I was eating. Eventually I got so weak from being malnourished and underweight that I couldn’t do anything but lay on the couch. I only got up to walk down my hallway to the bathroom and would have to hold onto the walls to steady myself.
Something had to be done so I called my GI for an appointment. I figured this would be a great time to get some answers. When I told him my symptoms he said “you look fine to me.” ARE YOU KIDDING ME? Who says that!? I told him about the pain I was in and how it felt just like when I was in flare-ups when I had my colon. I told him about how fast I was losing weight and I was concerned my intestine wasn’t absorbing things properly. I told him about how I was calling into work and not able to do anything but lay on the couch. And you guys, this is what he did… he prescribed me an anti-depressant! He wrote another prescription for tramadol. He told me I was probably not eating enough and that is why I was losing weight. And worst of all, he told me that he wasn’t going to do blood work because I had blood work done a month ago and it was fine then. He sent me home after that. Even after losing all that weight and feeling the way I was he wouldn’t even do bloodwork! He took nothing I said seriously.
I left his office so defeated. I knew that I was sick and needed help and he wouldn’t do anything for me. A few days later I got worse and my elecrolytes got all messed up that my hands and feet started tingling and my hands froze up in this weird position (I looked like a velociraptor!). Even though I didn’t want to go to the emergency room because I knew they would think I was making things up, I had to go. But after what happened with my GI I decided that after 3 years it was time to go to a new hospital.
So someone drove me an hour away from my house to the emergency room of a new hospital that was reccommended by a lot of my friends with IBD. It was the best decision I ever made. They did so many tests and it was such a great feeling because I hadn’t been taken seriously in so long. After a scope of my j-pouch they told me I had pouchitis. I didn’t think they were right about that because I have had pouchitis before and this surely didn’t feel like that. But I wanted to give them the benefit of the doubt because maybe it just felt different this time. I was put on Cipro and usually after a day I feel so much better if it’s pouchitis. But days went by and I didn’t feel better. The pain was still there, I was still very underweight, and not feeling well. Again I was starting to feel defeated. Would I spend the rest of my life with people not believing me and never having an answer? I told the surgeon assigned to me that this wasn’t pouchitis. I spoke up for myself and asked for another opinion. Another GI scoped me and there it was! Inflammation and ulceration in my jpouch and as far up as they could see. I had Crohn’s disease!
I keep this nasty picture around because it was one of my happiest days. This picture is proof that I wasn’t making things up. A part of me wanted to rush back to my other doctors and shove this picture in their faces and say SEE!
My diagnosis changed after 12 years of being diagnosed with ulcerative colitis to Crohn’s disease. It all made sense as to why I was still having so many problems after my jpouch surgeries. We started IV steriods, TPN, and eventually remicade. I spent 6 weeks in the hospital getting better and have now been hospital free for 7 months.
I know it has to be hard to be a doctor. There are people out there who do make things up. And there are people out there who do come to the hospital for pain medication. And if you can’t find an answer for someone’s problem I guess it is easy to start doubting them.
I spent 3 years with doctors thinking I was making things up. Being told it’s all in your head is one of the worst things you can hear when you are suffering. All I wanted was to be taken seriously. To be told something was in my head or for them to think I was lying while I was really actually sick was a horrible feeling. There were times I would be talking to the doctors and they would just stare back at me with this blank look in their eyes. Or other times when I could tell they were super busy and didn’t have time to talk to me. It made me feel like I wasn’t important.
So today as I was thinking about calling my doctor I had the immediate fear of him thinking I was making this up if I were to go in and they don’t see anything. This is a fear I have every single time I talk to a doctor. Even last week when my arthritis was so bad that I couldn’t lift my arms and my blood work came back normal my first though was, he probably thinks I’m lying. It kept me from calling my doctors in the past because they thought I was making things up and it sometimes keeps me from calling now. No one should have to feel like their suffering isn’t real.
*On a side note. I should have gone to a different hospital and found new doctors a lot sooner than I did. Let this be a lesson to everyone. If you know something is wrong and doctors are not doing everything in their power to figure it out then find someone else. Not all doctors are made equal. You have to speak up for yourself and be your own advocate. You should never be made to feel like your pain isn’t real, even if they can’t find the reason for it. You want to feel like they are on your side working with you to find an answer, no matter how long it takes!
I do, but I’ve never been happy with my body. In some ways I wonder if MS has helped me get over some of my body issues while simultaneously creating others… or maybe its more distracting me from the original body issues. hah. Im pretty sure I’ve come to some sort of terms with the fact that I will always hate my physical self. Oh well.
Now with the mind starting to go.. thats when I get really panicked…
Has anybody else had problems with maintaining a positive body image while living with a chronic illness?
In one regard I’m pretty okay with my body; most of the time I’m happy with the way I look. But when I think about all the things my body does that makes it awesome? It’s hard for me to think of anything.
"It was not until I became a patient facing the diagnosis of a chronic disease, multiple sclerosis, that I finally understood how these patients felt. It was through the repeated experiences of struggling to accept a body that seems to betray you, relinquishing control, needing to ask for assistance with tasks even a child can perform and having to redefine my role in a profession I cherish that I truly understood."