For Everything There is a Season

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

Category: healing (Page 1 of 2)

From Bed to Couch and Back Again

January 14, 2022 / / 6 Comments

This is me today. I have been awake for two hours and out of bed for about an hour. I’m surprised I’m even awake at all since all I want to do lately is sleep. I have successfully brushed my teeth and made my bed. That’s it.

I am now sitting on the chaise portion of our way-too-big-for-the room couch and despite considering putting up a big fight, I’m surrendering to the fact that this is where I am spending the day. And when it gets to be too much, I’ll walk the ten feet back around the corner to my bed. And, try to be OK with that.

I look at this photo and I see a lot. I see someone who desperately wants to wash her hair and doesn’t have the energy, or balance, to do so safely. I see the sweatshirt that I have now been wearing for several days, but changing it would mean doing laundry. I see the tiredness in my eyes from the inconsistent sleep and medical stress that has come my way lately.

Behind my eyes is my brain trying to convince itself that everything is alright…that all the small things I had planned at home for today aren’t going to happen and it’s not the end of the world. The catch up phone calls won’t happen. They are too daunting because I honestly cannot remember something I heard ten minutes ago today, so I can’t focus, and I just don’t have the energy to spare today. And as anyone with chronic illness can tell you, talking on the phone is the equivalent of going for a fast paced walk for many of us.

I try to be patient with myself and my current restrictions, but it is hard. The past ten days have not only flattened me physically, but mentally and emotionally as well…maybe even more so than physically. I got a diagnosis from one of my doctors that is in no way a big deal, but does require monitoring and possibly some treatment decisions down the road. This, I can handle.

I got a second diagnosis that is major in all the ways that these kinds of things can be: you have to first accept it, digest it, think about the short and long-term implications, start a treatment plan, get frustrated with treatment plan right off the bat because damnit, you just want your body to work right for once in its friggin’ life.

You cry.

You yell at God.

You apologize for yelling at Him. Although you’re pretty sure He understands.

You thank God that it’s not worse.

You beg God to just give you enough energy to make your husband supper tonight because gosh, that man deserves one hot meal waiting for him this week.

I am not handling this diagnosis as gracefully.

But let’s get back to the photo. What if I looked at the photo differently? What if instead of choosing to see all the things I can’t do or can’t take care of, I look at my face, one which smiles with memories of joyful times…my eyes, which are bright with hope for the future…my chest, which holds a heart that has been loved several lifetimes over.

My days on the couch, or in the bed, don’t define me and neither do my illnesses. Maybe the couch days are quiet opportunities to spend time with the One who does define me. Maybe they are a chance to try and be friends with my rebellious body. Maybe they are a chance to be still and grateful. Since I had no intention of blogging this week and I rather spontaneously picked up my laptop to write this morning, maybe the couch days are opportunities to use our gifts.

If you are having a couch, or bed, day today, know that you are not alone. There are a lot of us out here with you slogging through our health issues the best we can.

It’s alright to have couch days.

It’s alright to rest.

You’ve got this.

Yoga and My Body

October 30, 2013 / / 2 Comments

This past April or May, I started taking a gentle yoga class at my gym. I have been pretty consistent with attending the class, with the exception of a period of time this past summer when I was not feeling well and at the doctor all the time. It is a gentle yoga class with a wonderful instructor, who has gone out of her way to show me modifications to help accommodate the joint issues with my wrists and knees.

Since I started the classes, I have seen some dramatic improvements in my flexibility, strength, and balance. As some of you may remember, I dealt with a bout of Guillain-Barre in February 2012 which required me to go through months of physical therapy to regain full functioning of my legs. However, I continued to struggle with mild balance issues at times. Since starting yoga, my balance issues have all completely resolved. I probably have better balance now then I did pre-Guillain-Barre.

I have noticed in my last several classes how far I have come in the class in terms of being able to do and hold the various postures. Two in particular have always challenged me and this week, I have been able to do both of them with a lot of effort, but no pain.

Something very unique happened to me today though in class. Yoga is a very get-in-tune with your body type of exercise. At the end of class, we get into a position called Shavasana or in layman’s terms, the “corpse pose.” I know, I know. Makes you want to run right out and sign up for yoga. It is actually a very important part of the class. It is the chance for the body to regroup and reset itself. It is almost like a deep, meditative state and is especially important for someone like me, who frequently has a hard time quieting her mind.

So after what I thought to be a very successful yoga class for me, I got into Shavasana and I began to have all these thoughts running through my head. Emotions flooded me. It reminded me of the few times when I went to acupuncture and I would start spontaneously crying for no reason. The thoughts that flooded my mind today had to do with my body and how much I have started to come to terms with it, flaws and all.

Until recently, I have always been at war with my body for one reason or another. I didn’t like the way I looked: my hair was too curly, I had too much body hair, I was fat, the list went on and on. I had cancer in my mid-twenties which of course wreaks havoc on your body and self-esteem. Then came the autoimmune issues. They have caused me to be at war with my body more than any other thing that has ever happened to me. I have been working hard over the past few years on changing the way I look at myself and more importantly, the way I talk to myself. But there is something about yoga that has accelerated that process for me. Yoga allows me to see what my body is capable of, rather than how it has betrayed me.

While in Shavasana this morning, all I could think about is all the amazing things my body has done for me. Yes, I know I was supposed to be meditating and keeping my mind clear, but I figured this was all therapeutic for me, so I let myself experience it. My body has endured so much. In periods of my life, I have dumped a ridiculous amount of toxic food and drink into it, while avoiding any type of exercise. My body has endured up to fourteen hour shifts as a nurse; most of it on my feet. I have deprived it of sleep. It has undergone long and arduous tests and treatments; everything from months of radiation to bronchoscopies to surgeries. It has survived the invasiveness of it all. My body has endured toxic medications. It has enabled me to show love and affection. It has allowed me to go on adventures and experience a small part of this world. It has served me well when I have been of service to other people. This body has feed the hungry and held the hands of the suffering. It has made a difference in the life of others.

Lying still on that hard floor this morning, I became acutely aware of how amazing my body is. It is stronger today than it was yesterday. It is stronger this year than it was last year. This has not happened by chance; it has happened because I take better care of it; much better care.

As all these thoughts were going through my head this morning while lying with my eyes closed and I began to cry. It wasn’t a sobbing type of cry, but more of a silent tear down the cheek type of cry; the kind where you try to stop it, but the tears keep coming. Of course as this was happening, I immediately thought about the fact that I was in a room with about twenty other people and they might see me all teary and think I was a nut. But then I realized it didn’t matter. It was my yoga experience. My time to be aware of and rejoice in my body.

So thank you yoga.
And of course, thank you body.
Thank you for serving me well.

Going DownThe Road of Integrative Medicine

January 7, 2013 / / 6 Comments
 

“Progress always involves risks. You can’t steal second base and keep your foot on first.”~ Frederick B. Wilcox

 
 

I had been toying with the idea of seeing an integrative medicine doctor regarding my autoimmune issues for over a year. Integrative medicine takes into account the whole person and uses both conventional and alternative medicine as treatment. It focuses on body, mind, spirit, and community rather than just flesh, bones, and organs. It combines conventional medical treatment with complimentary and alternative treatments (CAM). Some of these CAM practices and treatments include dietary supplements, energy healing, clinical nutrition, and detoxification. Integrative medicine focuses on eliminating the cause of the disease rather than just managing the symptoms. Some people see integrative medicine doctors as quacks and some people view them as miracle workers. I know people who have seen them and the reviews have been mixed, although I would say I have heard more positive experiences than negative ones.

Despite the fact that the autoimmune illness I have, Sjogren’s syndrome, had been unstable for years (except with higher doses of steroids which are a nightmare to deal with), I had put off the idea of seeing an integrative medicine doctor. It wasn’t that I hadn’t dabbled in what I guess would be called alternative medicine, such as acupuncture and massage, but the idea of anything other than standard Western medicine making me healthier seemed foreign to me. Maybe that was due to the fact that I am an RN. I have been trained in traditional medicine and it is all I’ve ever known. However it was becoming clearer to me that perhaps traditional medicine alone was not going to be the answer for me. Not that I was looking for a cure mind you. I had accepted the fact that I have a lifelong chronic illness. But rather, I needed more effective tools and treatment to improve my quality of life because as it was, that quality of life seemed to be going downhill year by year.

So this past November I went in to see a doctor at Northampton Wellness Associates here in Massachusetts. The practice is a group of integrative health care practitioners. I will admit, I was skeptical but my skepticism dwindled as I spoke with my new doctor. We discussed my history and a lot of the things he said made perfect sense. For a while now, I have often wondered if my autoimmune problems were triggered by the radiation therapy I had for lymphoma in 1996. I was never a particularly sick child or teen but from 1996 on, one health problem after another crept into my life. I did not share this theory of mine with my new doctor (Dr. L) but he said the same exact thing to me. He thinks that I am genetically predisposed to an autoimmune disorder (my sixty-five year old father was recently diagnosed with one) and that the months of radiation treatments brought out the autoimmune illness. He was quick to point out that this was unavoidable. I had to have the radiation in order to save my life, but now we must also figure out the best way to deal with the end result of that possible trigger.

He also went on to explain that most of the symptoms I experience are autoimmune in nature such as my asthma, migraines, joint pain, allergies, etc. Now I had always thought this and my rheumatologist had made some associations, but the further back we looked into my adult health history, the more I realized how connected all my ailments were. Dr. L also stressed that there may be several other contributing factors to my autoimmune issues such as allergens, environment, diet. etc.

We came up with a plan. I agreed to go for allergy testing which would initially be done by blood work. He did warn me that the blood testing for allergies is not always accurate but it is the least invasive preliminary step in the allergy testing process. I ended up testing positive for two different mold allergies that are often found on certain foods and so I am now beginning to attempt to eliminate these foods. Luckily, many of them are gluten or dairy based foods, which I already have eliminated from my diet.

However my blood allergy testing also did NOT reveal a cat or dog allergy; both of which I know for a fact I have due to traditional scratch test allergy testing I had done years ago. I spoke with the allergy department at the Center and decided to continue on to the next step of intradermal allergy skin testing which I will begin next week. The intradermal skin testing is significantly more reliable.  I thought it was important because if there is any chance that allergens (especially to my dog) were contributing to my autoimmune issues, I may want to pursue non-medication treatment for it; specifically allergy injections.

Luckily, at this point, my health insurance covers a majority of the costs for Dr. L. My health insurance changed January 1st but at my November visit, I had my regular copays for the doctor visit and the blood work. I have checked with the Center regarding my new insurance which will have the same coverage as my old one, including for allergy shots if I do definitely go that route. However I am aware that there will probably be other suggested treatments that may not be covered by my insurance but my philosophy is to take that as it comes. I am also trying to look at it from the perspective that further treatment may help me eliminate some of my current prescription medication and overall health care costs (think hospitalizations and ER visits) and allow me to cut the cost of these, all of which have skyrocketed.

I made it very clear to Dr. L that I did not want to abandon my traditional treatment for the Sjogren’s at this time but yet, my goal was to eventually get off as many of my prescription medications as possible as I was on at least thirteen different prescriptions. That is a ridiculous amount of medication and I felt that I was probably having medication interactions. He was very receptive to this and said we would take it one step at a time. We would start with allergy testing, I would continue to wean off my steroids (which was my plan with my rheumatologist anyways), and he wanted me to start a new medication.

The idea of another medication surprised me coming from this type of doctor. It is called low dose naltrexone (LDN) and honestly, it is worthy of a blog entry all by itself. I had never heard of it before and it required a lot of research on my part. It is an “alternative” medication that he routinely prescribes for all of his autoimmune patients as it has been shown to have the capability to regulate the immune system and has had some good outcomes with certain autoimmune disorders. However I have only been on it for a month and am waiting a little longer to see how it continues to work out before I write that blog. The LDN can take a while to see a full effect so we agreed that we would meet again in February and see where things are at.



I liked the fact that Dr. L was treating this as a process and not overwhelming me with a million treatment options all at once because to be honest, I have seven or eight other specialists who are doing a great job at overwhelming me, no matter how unintentional it may be. I will admit, the process is very intimidating for me. I know about all things in traditional Western medicine. I know when to trust what a doctor tells me and I know when a doctor doesn’t know what he or she is talking about. As a nurse, I know about prescription medications (well except for LDN!) but not so much about supplements and herbs. It is certainly a learning process and one that I hope will prove to be beneficial.

Am I still a little skeptical? Sure. But I am also skeptical about putting toxic, possibly cancer causing drugs into my body as I have been doing. I am skeptical about dangerous side effects I may have, and have already started to have, from being on steroids the rest of my life. I am skeptical about the quality of life facing me until the day I die. So really, what do I have to lose?

“Why Me?”

April 4, 2012 / / 8 Comments

Every hand in need that reaches for me

is a piece of my salvation.
The troubles they have mirror mine.
In acknowledging their demands.
I help heal their wounds, give them hope.
What I want is to be selfish and sit in the dark.
I want to scream… WHY ME!
But with the Grace of God, I cannot.
I sympathize with the pain and sorrow.
My compassion is the light by which I walk,
it is what heals me.
~ Cyndi Lamacchia
This is an excerpt from the poetry that was read during our Easter Cantata at my church last Sunday. This particular part was written by another member of my church and in the moment that it was being read aloud by my minister, the words grabbed me. It seemed to echo how I had been feeling about my life over the past several weeks.
I think it is a great piece not only because it sang to me, but also because it can be interpreted in many different ways; both religious and non religious. My first interpretation upon hearing it is that it is about Jesus. But then I realized that it could also be about many of us; those who are facing huge obstacles in our lives. Sometimes one obstacle right after another in a relentless fashion.
This particular Sunday morning found me feeling lousy and I was questioning whether I should get up and go to church at all. I was battling a sinus infection on top of dealing with some of the same ongoing neurological issues and I was also recovering from a nasty fall the week before. Not even to mention that I was weaning down my dose of steroids, which typically causes my body a lot of grief until my body readjusts to the new dose. The assault on my body just seemed to continue week after week. And honestly, I was sick and tired of it.

As Chuck was getting dressed that morning and I was debating in my mind whether it was wiser to get up and go or stay home and rest, a statement that is very atypical for me came blurting out of my mouth. I said that maybe I should get myself to church if for no other reason than to ask God why he keeps throwing one health obstacle after another at me with no respite. Why can’t he just give me a break? I thought I was half kidding when I uttered the words but the thoughts and words came so fast that I think there was some truth to them. Because looking back at the past three months, it really has been one issue after another and let’s face it, I already had a full plate to begin with.

“Why me?”

I don’t do the whole self pity thing too often and to be honest, I don’t think that God is up wherever he is plotting different ways to torture me. I believe in a loving God. Not one that punishes us. I like to think that there is a reason for most things that happen in life but lately, I am not so sure about that. Am I being tested? Do I just have terrible luck? As you can tell, I have been doing a lot of questioning lately about why I am in the place I am with my health. I don’t blame God necessarily but I do sit back and wonder about it. Am I experiencing this in order to appreciate the many blessings that I do have in my life? Is it supposed to make me a stronger person? Or is it just the way it is?

Regardless, the onslaught of physical problems over the past three months has all led to me wanting to selfishly, as this poem mentions, spend more time than usual in the dark.

Stay in bed. Stay home. Let the illness win.

But I do not.
I keep going.

I keep going for many reasons:
For the family and friends who love me and have cheered me on day after day, week after week.

For all those affected by Sjogren’s syndrome and other chronic illnesses I have met online and in person whose hand in need has reached for me. At times they have been MY salvation.

For myself because I like to believe that someday the light by which I walk will be much brighter.
It is very easy to fall into the “why me?” trap. Although perhaps a perfectly natural response, it is a futile one. The time and energy spent in our self pity over events that we may not have control over leads us to make less than optimum decisions. Decisions are something that we DO have control over. Instead of making the decision to give into our crisis or illness, we can make attempts at avoiding the dark place. Like deciding if we truly need to stay in bed and rest versus making an attempt to be in the world. Or like the decision to push ourselves on a difficult day to get outside and walk; even if it is just a very short distance. Maybe making a conscious decision to replace “why me?” with “how can I help you” to another person. It is not always easy to make these decisions as sometimes we should rest or not take that walk if it will do more harm than good.

This is the point in my blog entry where I wrap it up with some heartfelt opinion or realization but truly, I have none today. And that is not a bad thing either. It means that I still wrestle with the issue and like is implied in the poem, I am not alone in this. I would like to know what my readers think about this topic.

Do you ever sit back and say “why me?”

What do you do to avoid getting sucked into that dark place?

Do you feel that it changes the way that you think about God?

Photo Courtesy of Google Images

The Road Less Traveled

January 23, 2012 / / 7 Comments
“The truth is that our finest moments are most likely to occur when we are feeling deeply uncomfortable, unhappy, or unfulfilled. For it is only in such moments, propelled by our discomfort, that we are likely to step out of our ruts and start searching for different ways or truer answers.” ~ M. Scott Peck

I have had a lot of questions about how my new found eating plan has been going so I figured I would blog about it rather than updating my Facebook status several times more a day than I already do. I know, I am working on that. What can I say? It’s winter, I have been housebound way more than usual, and even the dog gets sick of listening to me after a while!

So I have been going strong since the day after Christmas with eating healthier and getting back on my green smoothies. I wrote about my intention to further expand this in my previous blog entries: Patient, Heal Thyself and Nutritional Healing.  Last week I started the whole gluten-free, dairy-free, semi vegetarian, no soda, minimally processed foods, reduced sugar business. And yes, I am pretty much making it up as I go along since this is not a specific “diet” plan so to speak. Rather, it is a hodgepodge of what I currently think to be in my best interest health wise.

I will be frank. It has been difficult, very difficult. But not more difficult than my Sjogren’s Syndrome related health issues over the past few months and especially over the past two weeks. I am glad that I started to detox from all the Christmas indulgences the day after the holiday. It gave my body a chance to adjust to being off caffeine (which I was off of until the holidays) and processed sugar. I truly believe that there are certain foods that I am addicted to and the big ones are sugar and fast food. I also have found it amazing that once I have gone through that detoxification process, I crave the bad stuff so much less. Past experience has taught me that once I have more than a treat or two in a week, all bets are off because my body seems to then want it more and more.

One of the biggest challenges has been that I am doing this all at a time when I am taking a dose of steroids (prednisone) that I have never had to take at this dose (50mg a day) for this long a duration. Prednisone is notorious for causing excessive hunger, weight gain, cravings and menstrual difficulties which can in turn produce hormonal changes that affect all of the previously stated issues!  But I am resolved to not let that be a barrier for me. In addition, if my nutrition changes help my autoimmune disorder, then hopefully the prednisone will someday soon be a thing of the past. I know I need to give the nutritional plan at least three or four months before I can make a decision about whether it is working for me or not.

Another huge challenge for me has been figuring out the whole gluten-free/dairy-free situation. It is not that difficult to figure out one or the other but the two combined gives me a run for my money. Gluten and the hidden protein of dairy, called casein, are in an unbelievable amount of foods and personal care products.Think about anything processed: condiments, sauces, bread, pasta, beer, drinks, salad dressings, baked goods, cold cuts, marinated meats, hot chocolate; foods in restaurants; I could go on and on! I am not sure how diligent I need to be with the gluten in the personal care products such as  lotion, makeup, shampoo, etc. but I am going to err on the side of caution. My thinking is that if I am putting myself through all this, get it right the first time. As luck would have it, a lot of the personal care products I use because of my Sjogren’s are gluten-free anyways…thank god!

I have found many ways to make this whole process easier. The internet has been an invaluable tool as has my social network of friends and acquaintances who have trail blazed before me. I love the fact that I can type in “is Heinz ketchup gluten-free?” and get an immediate response; most of the time! Certain stores like Trader Joe’s, which I have always loved anyways, do a huge part with training their employees in helping you out. I found out today that they even have a bulletin board with different allergy food lists so that you can take the list around the store in order to make life easier.

I have also learned two valuable things; I must cook at home most of the time in order to accomplish this great nutritional feat and I must speak up for myself without worrying what other people are going to think. At home I have complete control over what is in my kitchen and more importantly, what goes in my mouth. When out in public, especially at restaurants, I have to ask as many questions as I need to and be proactive about bringing my own food as needed. I have been blessed with a very supportive fiancee whom although I do not expect to do this exact plan with me, is more than willing to eat whatever I make. I have successfully divided up our cabinet in sections for foods that are allowable for me and then not allowable in order to make the process easier for both of us. As a matter of fact, as I am writing this, he is giving me a break from cooking and whipping up a pot of gluten-free, dairy-free, vegetarian chili for tomorrow and the next couple of days.

I so love this man.

I know restaurants and socializing will end up being my biggest struggle with this whole way of life but I think it will get easier with time. I don’t want to avoid social situations just because I don’t think I can participate. I had my first restaurant meal at Pizzeria Unos the other day with my mom after a very long day. We were both famished after my doctor’s appointment and I had left my car in their parking lot so she could drive the rest of the way to Hartford. I had done a little online restaurant research and thought I might be able to get a decent, safe meal there. I was not disappointed. They had a separate gluten-free menu and the waitress was good at helping me figure out how to avoid the dairy. It was quite an enjoyable meal with my mom!

As I go through the next month or two of meeting with doctors and undergoing medical tests to try and sort some new things out in regards to the Sjogren’s Syndrome, I know that I am doing everything in my power to hopefully help heal myself. I am taking one day at a time, one hour at a time even. I am discovering a host of new foods that not only did I not know existed, but that I actually enjoy. It is  exciting doing such a positive change for myself.

It makes me feel empowered.

It gives me some peace.









































Photo Courtesy of Google Images

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