For Everything There is a Season

"In order to write about life, first you must live it." ~ Ernest Hemingway

Page 29 of 43

Eight Weeks Later – The Nutritional Odyssey Continues….

March 12, 2012 / / 5 Comments
“Let food be thy medicine, thy medicine shall be thy food.” ~ Hippocrates

Eight weeks later I am still following a nutrition plan that I began January 18, 2012. A lot has happened to me in those eight weeks, both in terms of the eating plan and in regards to my Sjogren’s syndrome. The Sjogren’s syndrome, an autoimmune disorder, has been the catalyst for drastically changing how I eat in the first place.

I have written two previous blog entries on the topic which can be found by following these two links so hopefully I am not repeating myself too much:

Nutritional Healing
Nutritional Healing Update

I started eating this way after hours and days of research in a desperate attempt to try and contribute to controlling my symptoms as my Sjogren’s symptoms were worsening relatively rapidly. I have a history of lousy nutrition and being overweight and since my first autoimmune symptoms in December 2007, not one physician has suggested that I do any dietary changes in an attempt to help alleviate my symptoms. Of course nutrition research is not funded because it is not profitable so there is a scant amount of true research information out in the medical community about the positive effects of diet on autoimmune disorders. However I read enough patient stories and experiences to know it was something I had to try and if it didn’t help my Sjogren’s, it sure as heck was going to help the rest of me.

People have been asking me if I have noticed an improvement in my Sjogren’s symptoms with this new way of eating which is gluten and dairy-fee, semi vegetarian, reduced sugar, reduced processed foods, no fast food, whole foods, no soda or caffeine. The answer is:

I cannot say with any certainty.

The same time I started my eating plan, I started on large doses of steroids for neurological issues, was diagnosed with two blood clots in my lungs, and received a diagnosis of another autoimmune disorder called Guillain-Barre. My body has been a huge deposit for steroids, blood thinners, and multiple other medications I am not accustomed to taking. I think that as I wean off the steroids and recover fully from the Guillain-Barre (which I absolutely will), the answer to this question will be more clear.

What I can say is that until my last steroid infusion, I was tolerating some of the side effects better than usual, my periods have been more tolerable, cravings for high fat and sugar laden foods have diminished dramatically. I feel much more in control, with a few exceptions, of my eating. Until my last infusion last week, which was the fourth in six weeks, and in addition to oral steroids everyday at home, I had lost weight. This last infusion killed me in terms of fluid retention, gaining some weight (which has already started to come off), drastic mood swings, heart issues, etc. In regards to non autoimmune issues, my lipid profile (which includes cholesterol, LDL, HDL) is the best it has ever been; very close to perfectly normal and my blood sugar is perfect. Very important since I come from a family history of heart disease and diabetes.

So time will tell. After doing some research, I also learned that it can take several months to notice a positive effect and I am in this for the long haul.

I can honestly say that to the best of my knowledge, I have been on plan with the exception of one time and that demonstrated some proof that I am on to something. After a horrendous appointment with my neurologist last month, I was driving home by myself and was very upset. So how did I deal with that? Burger King drive through of course. The whole works: double cheeseburger, fries, and a Coke. I had not had any Sjogren’s related joint pain in quite a while because of the steroids and sure enough, the next day I woke up so stiff and arthritic that I actually questioned if they gave me the right medicine, steroids, at my last infusion a few days prior. Of course they did. It was the food. I am certain of it.

I wish I could say it has been an easy journey but it has been challenging at times. The learning process, shopping more often, cooking all the time and such really can take a toll on me when I am not physically feeling well; especially with all the neurological issues I have had. Not to mention the physical therapy, doctor’s appointments, etc. However this has just meant that I have to ask for help when I am REALLY sick and that I have to plan and prioritize when I am able to do more for myself. For example, yesterday I spent time going through cookbooks, planning meals, and making a shopping list so that I can decrease my trips to the store. I only have so much energy to use in my day and it is limited lately but the food part HAS to be a priority.

My other challenge has been eating out and eating at other people’s homes. Because in reality, the rest of the world is not eating exactly like me although for the life of me, I cannot imagine why. Eating out has gotten easier and I have found a few restaurants that are very accommodating to my needs. They include places Red Robin, Pizzeria Unos, The Roadhouse, which is a local joint in my town, and a slew of independently owned restaurants in some nearby towns. I am finding that gluten-free is not as big a deal as finding a place that provides gluten AND dairy free options. I am hoping that as awareness of food allergies catches on more, there will be more options available so I can visit some of my old favorite haunts such as Kristina’s and the Hanger (both local places as well) once in a while.

My experience with eating at other people’s homes and social functions has been limited because of my health lately but I was at a family function this past weekend that was challenging, VERY challenging. But I did it. I knew there was going to be pizza, birthday cake, etc. So I brought my own supper and a low sugar, gluten/dairy-free dessert and thought how awesome it was that I was so prepared.

Yeah, not so much.

Pizza is my favorite food in the world and the aroma of the pepperoni soaked pie almost did me in. Plus I was all messed up from the steroids. I wanted to dive into that box head first or at the very least, take it and run like hell. So one might ask, why deprive yourself? What is the big deal about a slice or two of pizza? The big deal is that gluten and dairy can do damage to your intestines that you may not even know about and set you back god knows how long. It is not like a traditional diet where you give in to your craving and move on, compensating for it later. At least not that I know of and I wasn’t willing to risk all that hard work. I left that evening pizza free. And you can bet I will be making an awesome gluten and dairy-free pizza for Chuck and I sometime this week.

I have also found it very helpful to be prepared for travel such as for doctor appointments and long days. I bought a lunch box, a bunch of food containers, ice packs, etc. When you have what you can eat right at your disposal, it makes a huge difference when you come across a hospital coffee shop that literally only has a bag of peanuts and a bruised apple to choose from while you wait an extra hour to see your doctor!

So these have been some of the challenges in my new found way of eating. There have been a lot of blessings though as well. To start with, I have found a love of cooking that I never knew I had. And to be honest, I am kind of good at it! I am not the most creative cook so I rely a lot on some really great cookbooks I have found. However slowly but surely, I am learning to make some things without a recipe and discovering a culinary world I never knew existed. It makes me feel good to create something with my own hands that is healthy and nutritious for my body. Yes, there are occasions that I resort to a gluten/dairy-free processed meal that some factory made for me but I feel no guilt about that because it is so infrequent.

I also enjoy the challenge of creating dishes and meals that are not only on plan, but also taste fantastic. I appreciate food now more than ever because I actually taste the FOOD itself; imagine that! I also find that I am starting to look forward to certain healthy foods such as kale, black eyed peas, and quinoa, rather that Chef Boyardee ravioli or fast food.

I never want to be one of those people who runs around saying how their lifestyle is the only way to go; whether it be in regards to food, exercise, or anything else. But I will continue to let people know how it is going and share information. Not just because I happen to have this autoimmune disorder, but because the fact is, the typical American diet is lethal and the incidence of obesity and weight related health issues in this country is off the charts. We are so obsessed with losing weight that we don’t stop to think about being healthy. That should be the goal.

Sometimes all it takes is a small change. Eat a vegetable every day. Pass on the fried appetizer. I started this way of eating plan eight weeks ago but reality is, the process started for me a year ago when I drank my first green smoothie in an effort to get more greens into my body.

A whole year ago.

Who knows where I, or you, can be a year from now….

Photos: Courtesy of Google Images

Boring Details Medical Update

March 1, 2012 / / 11 Comments

“If you don’t like something, change it. If you can’t change it, change your attitude.” ~ Maya Angelou

I wear two pieces of jewelry these days; my engagement ring and this silver cross that Chuck gave me a month after we started dating. I had to take it off for my MRI yesterday and I gave it to him to hold. He took this photo in front of a snowy window in the MRI waiting room. Is it no wonder why I love him so?

I am a firm believer that the only way through hard times, pain, and suffering is through it. Not around it. So when this week approached with its nine plus appointments, multiple medical tests, and constant hourly changes in my schedule, medications, and therapy, I made a firm decision that I was just going through it. I knew it was not going to be easy, but my approach was one hour, maybe even one minute, at a time.

So far it has been an insanely busy week. It is a huge struggle when you feel like hell physically to get yourself showered, dressed, and prepared for one appointment after another; meanwhile trying to keep track of your other responsibilities such as who’s going to care for your dog, how you’re going to get places, getting the times right, eating, resting, etc. Throw in a few inches of snow for a messy commute and well, you get the idea….

So here’s the deal. I started physical therapy on Monday and will be going twice a week for a few weeks at least to start with. I was disappointed because my therapist was pretty focused on my lower extremities which at this point, are not the biggest problem; my upper extremities are. I am not 100% confident in his experience but that could be because he looks like he is fifteen to me. I will try and reserve my judgement until after another session or two and then if I feel he is not the right therapist for me, I will request someone else. The evaluation itself exhausted me and I am not sorry that I cancelled for today. I have exercises for home meanwhile.

My blood clotting labs are down (they should be higher) probably due to being back to eating green veggies again like I normally do. So they upped my blood thinner dose but now I am on a regular eating routine so hopefully this will straighten out at my next blood draw. At least no more injections. I still cannot wash my belly without discomfort because of the nasty large bruises. I am wearing my own pants now though. Elastic waistbands only but at least they are not Chuck’s!

My appointment with my pulmonologist was almost a three hour ordeal on Tuesday as I had to have breathing tests done and then he got called into an emergency procedure so he was an hour and a half behind. I think I handled that very well to be honest. I know that he also runs the intensive care unit at the local hospital and despite his best scheduling, sometimes these things happen. It is a small price to pay for seeing such a fantastic doctor. He truly looked stunned when I explained all the things that had happened since my last appointment. It was kind of funny to see a professional’s reaction to all of the recent events.

Because of all the steroids I have had, I rocked my breathing tests. Like textbook perfect, despite the blood clots in my lungs. While I am still on the steroids, I get to come off one of my inhalers, at least for now. Yay me! We reviewed the CT scan and I got to see my little blood clots live and up close. It was a touching moment.

OK, not really.

He thinks because I had another blood clot in my leg years ago, it does not look good for me getting off the blood thinners (Coumadin) in this lifetime but we will let one of my newest specialists (the hematologist) decide that when I see him next month.

The concern now is that despite my asking about this in the hospital, there was not an ultrasound performed of both my legs to see if I am regularly throwing blood clots or if this was just related to being immobile from the Guillain-Barre plus having a clotting disorder plus the possibility of the Sjogren’s playing a role. So we are doing that this Friday. I asked him if we really wanted to go looking for more trouble. He laughed and thought I was joking. I was not. But I know its important so off I went to acupuncture for the first time in a bit to see if it would help with my stress but unfortunately, a phone call from my long term disability company an hour after I got home from acupuncture pretty much negated any positive effects I may have had from that session.

Yesterday found Chuck and I in Hartford with my neurologist. It started off pretty bad because I had been so sick with these awful headaches in the back of my head; the ones which landed me in the ER last Friday. The drive down made me nauseous and I was having more weakness in my legs and arms as I was so sleep deprived. Apparently Guillain-Barre symptoms can wax and wane for a while, especially if you are sleep deprived. Neuro doc did an EMG which is not a day at the park but tolerable. I’ll spare too many of the details. After a series of nerve conduction shocks and a round of sticking needles in my muscle which lasted about a half hour or so, she said the test looked normal. What this means is that it did not show any permanent damage that she could find but I do have (had) Guillain-Barre. A positive test result would have been helpful for her to see more what is going on but a negative one doesn’t disprove anything; if that makes sense. I say any day you have a negative test is fine by me.

Had an MRI of my cervical spine that afternoon which the hospital graciously moved up from late afternoon due to the inclimate weather and us being over an hour from home. That was the test I was least worried about from a pain standpoint and it was awful. Because I have been having neck tremors, they were having a hard time getting still pictures and told me I couldn’t swallow or deep breath while the scanner was going. The test took an hour with minimal breaks. Ugh. I do deep breathing to help manage my claustrophobia in the MRI machine which then I couldn’t do but I have to say I did pretty good. Until about ten minutes or so before the test ended. I had been laying perfectly still on my back, on a head that was killing me in the back, and the pain was more than I could bear. I just let the tears come without moving my damn neck; but it was pretty painful.

Luckily, the neurologist and I had discussed these sudden headaches and she put me on a pain medicine that is specifically for headaches and shouldn’t keep me wide awake all night like the one I was taking. I had it filled at the hospital pharmacy so was able to take a dose right after the MRI before Chuck drove us home. She is not sure what is causing these headaches. I have had some in the past with Sjogren’s flare ups but very different from this. The concern is the neck and arm tremors that I am still having which are better but still there. Although she think the tremors may be Guillan-Barre related, she does not think the headaches are. It may be as simple as stressed induced migraine or tension headaches which I guess can be pretty bad. They did start right after I found out about the blood clot and Guillain-Barre diagnoses so who knows. She also thinks the lack of sleep for the past two months while being on steroids could be a trigger as well. The plan is to get MRI results to me by tomorrow at the latest and see if this new headache medicine is helping which so far, it has helped quite a bit. It also knocks me on my ass. No complaints there; slept four straight hours last night. That was a miracle.

Unfortunately, the neurologist also feels that I should have that last steroid infusion because of all the neurological issues I have had so we wandered over to my rheumatologist’s office and left a message about setting that up and I am expecting to hear about that today or tomorrow as well. And I got a follow up appointment with my rheumatologist finally which is no small feat whatsoever. So much to think about. So many more appointments.

So that’s the scoop so far. I still shake like a leaf sometimes, have nasty headaches, and am exhausted all the time. Today my body is just yelling “enough” and since I cancelled PT, I think I am going to just keep things as low key as possible and do some more healing. My body still feels so broken. Maybe some cooking. Definitely some snuggling with the pooch. And plan my next round of appointments for next week.

I have been really blessed this week with people helping us out with a few meals, checking in on me, giving me a ride when I need it (although I can get to Noho by myself now!), and especially in regards to watching Molly and getting her some exercise. Trust me, you never know how much those little things can add up and make crap like this so much easier. I have also been able to stay on my eating plan despite this crazy schedule and stress and not only am I proud of myself, but of the people who have supported me in that endeavor. I will be a much healthier person because of it, one way or another…someday!

Speaking of someday, don’t worry…we haven’t forgotten that we DID get engaged and that there will be a wedding. You just never know what kind of plans get made in waiting rooms….   😉

Beaten Down and Other Musings

February 26, 2012 / / 11 Comments
Fall seven times, stand up eight. ~Japanese Proverb

I know “beaten down” seems like a depressing entry for a blog title. And I also know that it is difficult for some of the people in my life, either who read my blog or follow me on Facebook, to read an onslaught of negative thoughts about what is going on with my medical issues. Heck, it is hard for ME to be in my own head sometimes lately or even to read a lot of negative thoughts on Facebook pages such as the Sjogren’s syndrome one that I follow. But I have promised myself to start being more honest in not only my writing, but also in my interactions with other people. So here we are. The thing is: when I write and am able to process my thoughts, my alter ego, the much stronger one also known as “the optimist” usually finds her way out. Bear with me.

Just as Chuck and I were starting to watch a movie at home last night, I leaned over to him and said “I just feel beaten down.” I wasn’t sure really what my problem was. My mood swings from the steroids had lessened just enough to make me think that I will make it through this course of treatment without continuing to cry or wanting to kill someone several times a day.

Not even joking about that one. I cannot believe people actually take that stuff for a non-medical reason!

But I had not been feeling like myself all day and feeling well, beaten down; maybe even overwhelmed from trying to process all the events of the past few weeks. After all, I had been diagnosed with two blood clots in my lungs, Guillain-Barre syndrome, and had a recent and exhausting trip to the emergency room just two days prior with severe head pain, nausea, and increased tremors. I was checked out for bleeding in my head and a blood clot to my brain which all turned out negative. On top of it, I was constantly trying to deal with insurance issues, disability issues, appointments, rude people on the other end of the phone, my computer crashing, getting what I needed medically from my health care team, the list goes on and on.

Chuck’s response to this big revelation I had last night was that of course I felt beaten down, who wouldn’t considering recent events in our lives as of late? He was not surprised by this at all. But I was. I am a fighter and I attack everything head on until I get to the other side. I know that. But as I thought about it some more, I realized that this feeling of being beaten down wasn’t about wanting to give up but rather to acknowledge and accept (there’s that word again!) where I am at during this given moment in time.

Physically my body is beaten down because it has been poked, prodded, and stuck with more needles in the past few weeks than it should ever have to see in its lifetime. It has endured countless sleepless nights and long days of appointments and tests. It is worn out. Worn out from behaving in a way it is not supposed to with its altered heart rates and blood pressures, tremors, weakness and, new pains that it is not used to. My body is trying, that is for sure. It is begging me to be good to it with the food I put in it and the care I give to the massive bruises and hematomas that litter my body from my legs to my belly to my arms. Sometimes I feel like it is screaming out to me to just stop all the invasiveness that the others inflict on it and just let it be. I want to do that; to let it be. But I tried to let my body do its own job and it could not.

My body wants to feel pretty again. Sure, I was never a supermodel to begin with and my body is actually a lot lighter than it used to be, but it does not feel pretty. It feels disfigured from the bruises and the rashes. From the hair that is starting to fall out from the steroids and the often pale, makeup less face that stares back at me in the mirror….the darkened eyes that used to be so much more vibrant. My body does not understand that it is an effort to get it clean every day right now and everything else is not as significant. Maybe that is where I go wrong because really, a little concealer is not that much effort is it? Even though I am angry at my body for betraying me so much lately, maybe seeing lighter eyes with less dark circles underneath them in the reflection of the mirror will make me less angry with my body for its obvious betrayal.

I love the Nathan’s hot dog competition. At least I am not doing this to my body!!

Feeling beaten down is not just physical but emotional and mental as well. The act of processing a lot of events while trying to maintain some shred of normalcy, routine and self respect is difficult at best. It doesn’t matter if it is related to having a chronic illness like I have or any other issues such as divorce, abuse, loss of a career, loss of a love, or loss of yourself. Fear of the unknown fills your head.

I will admit, I am scared. I am freaking scared to death. I don’t think I fully realized how much until yesterday. I am afraid of what the results from another MRI will show this week. I am scared of going for a neurological procedure (EMG) that I know for a fact will be painful. I am scared of the results; whether they will be bad or whether there will be any results at all which could help define what exactly is going on and how we are going to take care of the problem.

I am scared because I know my body is not acting right and I fear that it will not get back to where it was even just two months ago. Will I ever be able to do an activity again for more than ten or fifteen minutes without needing to sit or lie down? Will I ever be able to stoop down again without falling over or needing help to get up? Will I ever be able to shower and wash my hair again without it being this epic event that exhausts me and makes me shake? I know since I have Sjogren’s syndrome, my body will never exactly be the way it used to be, but will my body ever get back to where it was several months ago?

And as my fears consume me, I think back. To other difficult times and to all the other struggles and questions I had during those times. Maybe like we all do, I have learned from prior experiences. When I had a severe heart arrhythmia (before having surgery to correct it), I questioned if I could even get through a day without a heart episode. I questioned whether I could make it a month without an emergency room visit. When I had cancer in my mid-twenties, I questioned whether I was going be able to endure the treatments, if I was going to get married. I questioned whether or not I would live to see my twenty-fifth birthday.

All of those questions were answered. And I saw my twenty-fifth birthday, as well as my fortieth. I got through it.

So for now, I will accept the fact that it is all right to feel beaten down; to allow my body to go through that process. It means I am down, but I certainly not out.

I will have faith.
I will trust in God to see me through.

I was sitting in church this morning and looking around at the various people scattering the pews and wondering how many of them were feeling beaten down right at this moment? Or wondering how many of them had maybe felt beaten down at a different time in their lives? A time where some things did not make sense or that they felt they had endured more than their fair share of beatings so to speak. I don’t have to know all of their stories to know that those stories are there in some form or another. Tales of survival. Tales of people who became stronger and more compassionate people because of what they had to endure . Journeys that were easier than mine and definitely journeys that were more difficult than mine.

People who were beaten down but yet rose up.

Again.

And again.

And again.

Just like I will.

Photos: Courtesy of Google Images

How Much Can One Spirit Take?

February 22, 2012 / / 13 Comments
“Keep your face to the sun and you will never see the shadows.” ~ Helen Keller
“Placing one foot in front of the other, I’ve climbed to higher lengths. Reaching beyond my own limitations, to show my inner strength. No obstacle too hard for this warrior to overcome. I’m just a man on a mission, to prove my disability hasn’t won.” ~ Robert M. Hensel

This blog entry is intended to update friends, family, blog followers, and the general public about my recent health issues. I prefer to try and make my blog about different life experiences and topics rather than about my day to day medical sagas, but I received some excellent feedback last week about my blog entry entitled: From Medical Crisis to Inspiration. I was told that it was helpful to have a clear understanding of what is going on with me and I found it helpful because it fielded a lot of questions and concerns at a time when my energy and time is precious to me. Not that I don’t want to talk about it in person, by e-mail, or on the phone; I do. But I also like to talk about other things going on in the world as well!

I went to see a neurologist yesterday afternoon because of some scary symptoms I have been having since maybe around Christmas/New Year’s. They included sudden and severe pain in my entire legs and feet that felt both muscular and like someone was stabbing the bottoms of my feet. Very different than my typical joint pain from the Sjogren’s syndrome. It was getting difficult to walk Molly and even the touch of the bed sheet on my feet could feel like agony. Burning, numbness, and tingling in my legs and feet were constant. I went to see my primary care doctor within 2 days of the symptoms starting and my small prednisone dose (steroid) that I was already on for the Sjogren’s was drastically increased. It was thought that I had neurological involvement from the Sjogren’s which seemed like a perfectly logical explanation to me. That’s the thing about having an autoimmune disorder though, everyone blames that first, including myself.

I was about a week away from seeing my rheumatologist who treats the Sjogren’s and although the steroids were helping the pain a bit, I started to have difficulty walking in regards to coordination and balance. I felt like I was drunk without the fun of actually being drunk. Severe weakness took over my lower half of my body and even getting up off the couch was an event. Then the weakness began in my arms and upper body and all of a sudden, driving, showering, and household chores became almost impossible. I was spending a lot of time in bed and began to wonder if I was just depressed from the steroids. But my body just did not feel right.

I saw my rheumatologist who ordered a brain MRI (which was negative), blood work and started me on IV steroid infusions since it appeared that the prednisone (oral steroid) was having some positive effect. She considered having me see a neurologist but wanted to do the MRI and one steroid infusion first. I got significantly better with my walking and pain after the first infusion so she scheduled three more and referred me to a neurologist as I was still having tremors in my arms and some weird stuff with reversing my letters and words when I typed and wrote.

I seemed to be improving with the next two steroid infusions neurologically but ran into complications with heart palpitations and two pulmonary embolism (potentially life threatening blood clots in the lungs). Things were getting complicated fast yet again. This past weekend I became very discouraged because despite tolerating my steroid infusion better, my hand tremors started to make it difficult to even get a fork to my mouth without slobbering food on my shirt. Utterly ridiculous. I also appeared to really be struggling with my energy and weakness at times although not as bad as weeks prior. But the good news was I was seeing the neurologist and it might be helpful for her to see me when I was symptomatic.

Off to the neurologist yesterday. I hate neurologists. I’m sorry but it is true. As a nurse and as a patient, I have never had a good experience with one. Until yesterday. Dr. Evelyn Gleeson at St. Francis Neurology is hands down one of the best doctors I have ever encountered in my life; and I have encountered many. She is not only brilliant, but compassionate as well. Immediately I was able to build a rapport with her.

My neurological exam, although not horrible, did turn up some interesting symptoms and a diagnosis that floored both me and my mother.

To begin with, she does think there is a possibility of a Sjogren’s syndrome related neurological issue but does not think that was what happened to me over the past six weeks. She is also testing me for Lyme Disease and some vitamin deficiencies to cover some other diagnoses but then she hit me with what she really thought was going on.

She looked me straight in the eye and said she thought I had Guillain-Barre syndrome.

Excellent information and resource for Guillain-Barre if you are interested:  http://www.jsmarcussen.com/gbs/uk/overview.htm

And another: http://www.guillainbarresyndrome.net/

Neurology was never my strong suit as a nurse but what I did remember from my days as a pediatric nurse was kids with Guillain-Barre being transferred from my floor from the ICU after being on a ventilator due to paralysis of their entire body. Many recovered fully, some did not, some needed months of rehabilitation. Some never made it at all.

What….the…fuck?    (I get to say that this week, sorry).

So I tell her that how can that be? I got better with steroids for a while. She then went on to explain that Guillain-Barre (GB), which is an autoimmune disease, can be helped with two other treatments called IVIG or plasmaphoresis if it is treated in its acute stages, usually the first two weeks of symptoms.  However first of all, I missed THAT window of opportunity (we are guessing I am at about week six) and second, GB just has to run its course, usually being hospitalized with supportive care in order to keep the paralysis (or milder paralysis as in my case) from paralyzing your necessary organs that keep you alive, like your lungs. Steroids do not typically treat GB and it was most likely coincidence that the GB ran its course as it appeared the steroids were working.

Listening to her, doing some research, and looking back, I think she is right.The first page I pulled up on Google last night and there I was, all in black and white…my last six weeks or so. All the neurological signs, the heat palpitations, the blood clots, the choking episode I blew off on Super Bowl Sunday thinking that the gluten-free pizza crust was too dry for me, the subtle difficulties I was having with swallowing….all likely GB related.

So where does this leave me? I have to go for an EMG which will test my nerves and any damage from the GB and to check for Sjogren’s related nerve issue which is still a possibility. An MRI of my neck and spinal cord as it appears there is concern about damage in that area which would account for my continued tremors and upper body weakness. Physical therapy for both the neurological issues and pulmonary embolism to help regain as much of my previous self as possible. Recovery from GB varies widely. There are different statistics wherever you look. Some say weeks, some say years, some people always have a deficit of some sort.

I say screw the statistics…..

As I have tried to process all of this information since leaving her office yesterday, I have so many thoughts. My first was to be angry at the fact that I DID seek out medical care when I first became so symptomatic and despite the fact that I was taken seriously, the diagnosis was missed. Maybe if I had gone to an ER instead of my regular doctors, maybe if I insisted on seeing a neurologist sooner. Maybe this, maybe that. Fact is, GB is a rare illness and it is not the first diagnosis you jump to when a patient presents with neurological signs, especially when they seem to improve on steroids.

More than being angry, I am grateful. I feel like a hand has reached out to me and brought me back from the brink…yet again. Despite the fact that I do not understand why these things keep happening to me, I am very well aware that in the past nine days, my outcomes could have been so much different. Despite being emotionally overwhelmed, I am humbled to be here.

Even though I have experienced a lot of self growth over the past two years or so, my life has gone through a significant, often painful, transition over these past six weeks in regards to my priorities, my personal life, and my relationships. Some people and situations I thought were certain and steadfast have turned out not to be while at other times, I have been taken aback by the generosity and compassion of people who were once strangers. I am learning the difference between friend and acquaintance. I am learning how to be less judgemental; despite the fact that I didn’t think I was. Is this where my medical journey is supposed to take me? And is it supposed to be this difficult? I don’t know.

What I do now for certain is that today is Wednesday, February 22, 2012. The sun is shining and I am certain that I am loved. I have necessary tasks I must take care of today to get further down this road. I must eat well, take medication, make appointments, relax, read, and heal. Oh yeah, and shower.

That is enough for today.

The Eye of the Tiger: Guest Blog by Chuck Myers

February 18, 2012 / / 10 Comments

It was perhaps a month ago that Chris asked me if I’d be interested in being a “guest blogger” on her site. Having a huge ego, I of course agreed, as her followers have grown exponentially this year! (Of course, I only agreed if I could post it without any edits, as well!) I’ve been tossing around a few ideas in my head since that time, but the events of the past few weeks have led me to settle on this one…

Tigers…they’ve fascinated me ever since before I can remember. A stuffed vinyl tiger was one of my first toys, and I still have it today (Thanks Mom!). They’re the animal I want to see when I visit a zoo, and I have one on my right arm. It’s one of my dreams to be able to actually touch one some day; just to feel the aura of an animal that some cultures believe has magical or supernatural powers.

If you look up tigers as a zodiac symbol, you’ll find a huge amount of information, and while the Internet can provide you with nearly as much misinformation as accurate information, there are some traits that are present on almost every site you find.

Tigers are somewhat unpredictable, passionate in their relationships, and capable of great generosity.  They are symbols of strength, tenacity, and bravery.

Chris is my tiger.

Certainly, she is sometimes unpredictable, and I think that’s a wonderful thing in a relationship. I don’t think there’s anything worse for a relationship than predictability.  Of course I believe that you need to be able to count on your partner, but knowing just what’s going to happen all of the time leads to the kind of ennui that will kill your relationship.

Passionate…Chris is passionate about everyone she connects with, and sometimes too much so.  It’s a wonderful thing for family, though, as well as for the projects and causes she takes on.

But it’s the strength, tenacity and bravery that really sing to me when I think of Christine.

It takes a lot of strength to not only face this autoimmune disorder she’s saddled with, but to fight it through any and all means available to her.  She has fought it (and continues to fight it) with traditional western medicine, and a plethora of physicians in all specialties.  She fights it with eastern medicine, and what many call alternative methods, such as acupuncture and massage. She fights it with what some people might call drastic dietary changes, exercise when possible, and adapting her lifestyle so that she can continue to be the person that she is.  It takes a strong person to hear “no” a thousand times, and persevere.  It takes strength not only to deal with the disorder, but the treatment.  It takes strength to fight the swings that the medications attempt to impose on your moods, so that you don’t hurt the ones you love.

Tenacity…You can’t even begin to doubt it in Chris.  It takes a tenacious personality to work their way through the medical system we have in this country, to try to find the right people to help you.  Five rheumatologists, three eye doctors, unknown numbers of primary care practitioners, ob-gyns, and emergency room physicians head the list. It takes long hours driving to Boston, Springfield, and Hartford to see the right people; people that might know something about this little-known disorder.

It takes tenacity to wade through the morass of bureaucracy that tries to keep you from getting the help you need, including insurance companies, health insurers, and state and federal agencies.

Bravery?  I haven’t met too many people who can outdo her in this department.  Through the myriad of symptoms, she keeps fighting to maintain her relationships, and to keep doing the things she deems important to keep her the person that she is.  The symptoms that appear she meets head on, and develops plans to deal with them.  She fights this thing with everything she’s got, and then some.

Then of course, there are the little things, like injecting herself in her abdomen.  I may be a lot bigger than she is, but she’s a lot braver!

Strength…Tenacity…Bravery…all great things!

But the best thing about tigers…They’re cats…They always land on their feet.

Chris is my tiger, and I know that she’ll do the same!

« Older posts Newer posts »

© 2024 For Everything There is a Season

Theme by Anders Noren — Up ↑