For Everything There is a Season

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

Category: chronic illness (Page 7 of 13)

Traveling To Disney With Sjögren’s

September 13, 2013 / / 1 Comment

I have decided that to take blog vacation. This means that after today I will not be accessing my blog or my Facebook blog page so if you leave comments please be patient because they need to be moderated before they appear on the blog. This is a bit of a big deal for me because in the three and a half years I have been blogging, I have never taken a planned break. On the occasions where I have been away from home, I have still checked my blog via iPhone. The reason for this was simple. I have worked so hard at developing Thoughts and Ramblings and my readership that I was afraid to not be on top of things. I didn’t want to lose momentum. However a lot has gone on recently with the publishing process of my first book, Tales From The Dry Side: The Personal Stories Behind The Autoimmune Illness Sjögren’s Syndrome, the Kickstarter funding project, getting married, and dealing with new health issues. I think overall I have done a good job in keeping up with my blogging/writing as well as the numerous e-mails and other correspondence that has resulted from all of this. But it’s time. Everyone needs a vacation.

I will be off the Thoughts and Ramblings grid until about October 2nd. During that time I will be going on our eight day honeymoon to Disneyworld which is the subject of today’s blog entry. I have only been to Disney once and I was about twenty-one years old. I was in college and three of my friends and I (hi Tina, Lauren, and Ellen!) drove there for spring break. We stayed at a Red Roof Inn somewhere off the Disney property and endured the very long ride both ways. We were young and relatively broke but none of that mattered. We had a great time.

A lot has changed since that Spring Break trip all those years ago. There are new attractions at Disney; a whole new park even as Animal Kingdom was not built back in the early 1990’s. New resorts, new restaurants; a whole different experience probably. A lot has changed for me since then as well. I’m twenty years older and let’s face it, not in the best of health.

Traveling for me is difficult. Since I got sick in early 2008, I have only flown once and it was for a two day trip to Ohio; about a two hour trek. I ended up in the hospital within two weeks of coming home. The rest have been car ride getaways. The longest was about five days and that was one time while a few others have been two-four days. I can say that in the last five years I have never taken a trip that has not made a negative impact on my health in some way; some bigger than others. But I plan as well as I can and just take the risk. Life is too short not to.

This trip is a biggie for someone with Sjögren’s. Longer time in the air flying. Have I ever mentioned how dry airplanes are?? Lots of physical activity since it is Disney. Loads of food restrictions to deal with. Heat and sun since it is Florida. Standing in lines. Traveling with a ridiculous amount of medications, supplements, and medical supplies. However I have done quite a few things in preparation for this trip that I think will work to my advantage on this amazing honeymoon that we have planned. They are as follows:

* The single most important thing we did when planning this honeymoon was to not book it for right after our wedding. I was a little concerned that going on our honeymoon four months after our wedding would take some of the magic or fun out of it. Absolutely not. I am extremely excited for this trip. Weddings are exhausting no matter who you are. I am a million times more rested and ready for this trip now than I would have been back in May. We had gone away for a few days to a bed and breakfast in our home state after the wedding but that was MUCH different than this Disney trip. Plus we didn’t do much while we were away in May. My full attention is on the experience we are going to have on this trip rather than reliving all the memories and details of the wedding. I would strongly suggest doing this to any bride and groom, not just to those who have to deal with chronic illness. I was married before and had a honeymoon right away so I do have a basis of comparison. Do it the way I did this time around. It will be better, I promise!

* We booked a hotel on property at Disney. Besides the fact that it is just a cool experience in itself, it cuts down on travel time to and from the Disney parks, attractions, etc. and it saves on having to walk from the parking lot to the parks and back.Staying at a Disney property also makes you eligible to use their luggage service. You check in your luggage at your home airport and you don’t see it again until you get to the room at your resort. Same for the trip home.

* Pre-booked many of our reservations, especially dinner reservations. While this is typically suggested for anyone wanting to eat at Disney, it is also important for someone with food restrictions because it gives the restaurant a heads up as they were told about the restrictions when the reservation was made. We were also careful not to overbook so that we had some flexibility in case I was struggling with my physical issues.

* Got a letter from my rheumatologist stating that it was difficult for me to stand for periods of time and difficult for me to be in direct sunlight or excessive heat. There is something at Disney called the Guest Assistance Card (GAC). The GAC card alerts the cast members of your limitations so that appropriate accommodations can be made. For example, if there is a long line for an attraction, they may have me wait in a shaded area without losing my place in line. You DO NOT need a doctor’s note to obtain a GAC card but I thought it helpful in case they need clarification on what to put on my card as they are not all the same.

* Got a letter from another doctor stating that I need to be allowed to bring prefilled syringes on the plane. I also bought this awesome small, collapsible cooler bag for my carry-on to keep the syringes cool as they need to be refrigerated. It will also be helpful to store my refrigerated eye drops in it.

* I sucked it up and rented a scooter for the week. There is a previous post on this from last week if you’d like to read it. I will be curious to see how much I use it. The scooter gets delivered and picked up right to your hotel.

* Starting what will hopefully be a short course of prednisone in preparation for my trip and during it as well. I am looking forward to it. My rheumatologist felt that I should have been on it five months ago.

* I have never used a scooter before so I went to Target and practiced on one of theirs. That was an excellent idea and I highly suggest it if you rent a scooter for the first time. Better to crash into a display at Target than someone’s leg at Disney!

* There are several grocery stores in Orlando that offer delivery service. I submitted an order with Orlando Grocery Express and it will be delivered the morning we arrive. The great thing is if we are not there, our hotel will keep it for us until we arrive. I did this for several reasons but mostly because I drink an obscene amount of water so I ordered a few cases along with some drinks my husband likes. I ordered some gluten-free snacks and breakfast items as I am not a big breakfast person. I also came up with the idea to order some toiletries, such as shampoo, soap, and face wash, so there is less to pack in the suitcase. Less toiletries equals more room for medical supplies.

* Speaking of, I raided the trial size bins at several local stores. Target has the best selection and amount of trial size items.

* We have one tour at Disney that promised to be challenging for me physically, the Wild Africa Trek at Animal Kingdom. I almost said forget it and then that little voice in me said “go for it, you only live once.” However we booked it for early morning the day after we get there. I didn’t want to wait until later in the week when there might be a chance of feeling more exhausted.

* I did a lot of planning via books and online. You would be amazed at how much is out there in the internet world about traveling to Disney with a disability. A special shout out to my friend Kristen at Sjoggie StAHMer. She has Sjögren’s and has traveled to Disney with her husband and young daughter. She had some excellent advice!

* Booked our honeymoon for one of the least busiest times at Disney. This will mean less crowds and most likely, shorter waiting times.

* Booked airport parking with a company that handles your luggage for you on and off the shuttle bus. I am traveling with someone but he only has so many hands.

So that is pretty much it. I think the most important thing to remember when planning a trip like this is to use whatever means are available to you to protect your health. The more energy you can conserve during the trip, the more likely you are to enjoy it. Those of us who live with any type of autoimmune illness or chronic disease tend to have less opportunities to travel than many people so it is important to make the most out of our trips. Especially honeymoons!

I am thrilled beyond belief and feeling blessed that my husband and I have this opportunity. As excited as I am, I am especially excited about the opportunity to spend EIGHT whole days with my husband. No work, no commitments, no places that we have to be. Eight days with no medical appointments or afternoons on the phone arguing with insurance companies. No bed to make in the morning. No dishes to wash.

Just him and I.
Perfect.

30 Things You May Not Know About My Invisible Illness!

September 5, 2013 / / 3 Comments
I follow a blog called Interstitial Cystitis: Catherine’s Journey and she did a blog entry based on a questionnaire she found on an invisible illness website. I read it and thought it was a great way to better inform people about what it is like to live with Sjögren’s syndrome, which is usually an invisible illness. It’s ironic because I just talked about invisible illness in my previous blog entry on scooters and Disney. So here is my questionnaire. Please feel free to copy and paste and to your own. Awareness is critical!
 
 

In honor of National Invisible Chronic Illness Awareness Week (September 9-15, 2013), they asked those of us suffering with chronic, invisible illness to answer the question: “30 Things You May Not Know About My Invisible Illness”.  Here are mine:

  1. The illness(es) I live with are: Sjögren’s syndrome. Also Factor V Leiden, Hypothyroidism, PCOS, Asthma, ?Interstitial Cystitis, Esophageal Motility Disorder
  2. I was diagnosed with it (Sjögren’s) in the year: 2011
  3. But I had symptoms since: 2007-2008
  4. The biggest adjustment I’ve had to make is: Being out of work and on disability; having to take rest periods throughout the day.
  5. Most people assume: A lot. Specifically that I must be feeling well because I “look” fine and that I am taking advantage of the system because I am young and disabled/on Medicare. 
  6. The hardest part about mornings are: Figuring out how I am going to prioritize my day.
  7. My favorite medical TV show is: Grey’s Anatomy. 
  8. A gadget I couldn’t live without is: My laptop. It makes writing easier and keeps me connected to the world on days I cannot leave the house.
  9. The hardest part about nights are: Pain. My pain is usually worse at night. And not sleeping.
  10. Each day I take: At least 15 pills/supplements. And that is an improvement.
  11. Regarding alternative treatments: I have been doing this for about 10 months. I am not as convinced that alternative medicine can “cure” autoimmune illnesses but I have had significant improvement with a lot of my issues so I think alternative medicine is a critical aspect of my treatment plan.
  12. If I had to choose between an invisible illness or visible I would choose: Neither. This is a dumb question.
  13. Regarding working and career: I miss it. I miss caring for other people on a daily basis and I miss the intellectual challenge of working in the medical field. I enjoy writing but I have come to find out that I enjoyed “going” to work.
  14. People would be surprised to know: I get sick of hearing people complain sometimes. Not my friends who confide in me about something, even about minor matters. But I get sick of  people complaining on Facebook about the stupidest things. I try to sit back and remember that everyone’s issues are different and important to them. It bothers me when people are always (note that I said always) complaining about their kids. Be grateful you have them.
  15. The hardest thing to accept about my new reality has been: That I will never be cured.
  16. Something I never thought I could do with my illness that I did was: Write a book which is currently being published!
  17. The commercials about my illness:  Don’t exist! 
  18. Something I really miss doing since I was diagnosed is: Being able to just “get up and go” whenever I want; being spontaneous; working. Most of all I miss waking up and physically feeling good.
  19. It was really hard to have to give up: Some of the foods I used to enjoy; my nursing job.
  20. A new hobby I have taken up since my diagnosis is: Writing!
  21. If I could have one day of feeling normal again I would: There are SO many things! But since it is only one day, I would go skydiving.
  22. My illness has taught me: What it is like to truly physically suffer. It has taught me to be grateful and humble. It has taught me the value of true friendships and the necessity of keeping toxic, negative people out of my life. It has taught me who my real friends are. It has taught me to appreciate the everyday events in life.
  23. Want to know a secret? One thing people say that gets under my skin is: Advice on how to handle my illness. This is a fine line. I am OK when somebody mentions something to me once i.e.: a Paleo diet. But it ticks me off when they bring it up over and over again. It also upsets me beyond all reason when someone I know tries to sell me some “miracle cure”. Completely classless. Luckily, it doesn’t happen often. There are a few other things but those are the biggies.
  24. But I love it when people: Call me or check in via e-mail. Spontaneous visits. I love it when people tell me that my writing has made a difference in their life.
  25. My favorite motto, scripture, quote that gets me through tough times is: Way too many to list. If you go to my blog’s Facebook page, you will see what I mean.
  26. When someone is diagnosed I’d like to tell them: Never, ever give up.
  27. Something that has surprised me about living with an illness is: That I am happier now than before I was diagnosed.
  28. The nicest thing someone did for me when I wasn’t feeling well was: There is no one thing because so many people have done so much for me. Things that I appreciate a lot though include: offering to bring me lunch or dinner, offering a ride to an appointment, sending me regular mail (like in the mailbox!), making me laugh, talking to me about anything besides me being sick.
  29. I’m involved with Invisible Awareness Week because: I think it’s important to help raise awareness and educate others about what those of us living with invisible illness(es) are really going through each and every day.
  30. The fact that you read this list makes me feel: Hopeful!

To Scoot Or Not To Scoot, That Is The Question

September 4, 2013 / / 7 Comments

I have had a difficult decision to make ever since my husband and I booked our honeymoon to Disney; which is in less than three weeks. To the average person it may not seem like a big deal but to me, it has been this gut wrenching decision that has taken me months to make and come to terms with. The decision I was struggling over was whether or not to rent a scooter to use during the eight days we are down in Florida at Disneyworld.

Most people I have talked to regarding this decision do not understand why I would even consider NOT renting a scooter considering the physical issues I have with arthritis, fatigue, and the difficulty I have with extreme heat and sun. To them, it seems like a no-brainer. And in some aspects it is a no-brainer. If you Google “scooters” and “Disney”, you will see that the use of scooters in Disney is rampant. A whole other topic for another day. It’s not like I would be doing anything unusual. Rent the scooter and just use it. Disney is huge. Why stress out over it?

I have never used an assistive device during all these years that I have battled extreme pain and fatigue. Not once. I have been on vacations and day trips. I have struggled at times to even get through a short shopping list at Stop and Shop where by the way, they do have scooters. I am not against scooters, wheelchairs, canes, walkers, or any other assistive devices. I know people who need them and use them. But I do not use them.

It is not because I do not physically qualify to use something like this at times because anyone who knows me knows that I certainly have had periods of time over the past five plus years where an assistive device would have been most helpful; especially a scooter. At first I thought it was just a pride thing or that I was worried what people would think when they looked at me using a scooter. I have this invisible illness which means that I typically look well on the outside and feel horrible on the inside. But then I realized that it is so much more than that. My desire and determination to intermittently not use an assistive device is due to one emotion and one reason: fear. I am scared to death.

I am scared to death that this autoimmune illness I have will progress. That someday I will be dependent on an assistive device to be able to go out into the world or even to function in my own home. I am scared to death because I have had so many different body systems affected by this illness that someday, it will get the better of me. I fear that I will end up in kidney failure or with neurological impairment that will prevent me from walking. I fear that I will be one of the Sjogren’s patients who develops Non-Hodgkin’s lymphoma. Or pulmonary hypertension. Or end-stage liver disease. These are not unrealistic fears. Although not as common as some of the other Sjogren’s symptoms, they do happen. People do die. So to me, needing to use a scooter at Disney feels like I am giving in to my illness.

To be honest, this position I have taken for myself about using assistive devices has served me well over the past several years. Has it caused me more pain? Sure. Has it sometimes limited what I can go out in the world and do? I don’t think so. But I do believe with my whole heart that pushing myself in terms of my mobility has made a positive impact on my lifestyle. I am a big believer in using what you have and also in the idea that you lose what you don’t use. I know there are people who have no choice in whether they use an assistive device or not. I have that choice. And I believe that if I had made a different choice, I wouldn’t be as active as I now am on some days.

This decision has been complicated by the fact that I got a sense from my husband that he was not on board with this whole scooter at Disney thing. And before anyone goes jumping down his throat about this, it has taken some heart to heart discussions between us to get to why I was getting weird vibes from him about it. (Disclaimer: I have his permission to publicly blog about this.) Of course I don’t need his permission in my decision about whether to use a scooter or not but I do value his opinion and it was important to me to hear his thoughts. I also felt like I needed his support on this. Come to find out, the weird vibes I was getting were accurate. My husband eventually told me that even though he wants me to do whatever I feel I need to do, that he felt like renting a scooter would be giving in to my illness. Same exact thoughts I was having.

But here’s the thing and this I know with absolute certainty: I’m a fighter. I have never given in to this illness. There are times where I have been accepting of the illness and the limitations it has imposed on me but I would not call that giving up or giving in. I also know that many, if not most people reading this, have no idea of what I go through on a daily basis just to function. Although my husband has a pretty good idea, he still cannot physically feel what I feel. He does not know every single instance I have pushed through when I should have been home in bed. Nobody does but me. And that is how I prefer it to be because I don’t want my life to be a series of verbal complaints coming out of my mouth about how lousy I feel.

I remembered a similar decision I was trying to make a few years ago regarding applying for a handicap parking placard. Similar thought process. A good friend told me that I should get the placard and if it made me feel better, only use it when I absolutely had to. She must have told me this on several occasions and finally I got one. And as I was making my scooter decision, I thought about all the times I got myself to the store, the doctor, or to a much needed social event just because I could use that handicap placard and park closer to my destination. I thought about how during those times, I had more energy to complete my errands or enjoy my time out with friends because of the placard.

Why would Disney be any different? Say for example it’s Day Two of our trip. It’s 5pm and we have spent a majority of the day at Animal Kingdom and we are now resting back at our hotel. And my husband and I want to go Downtown Disney to try one of the many restaurants there that we have been talking about for the past year and a half. But my joints hurt so bad and I am so exhausted that I cannot fathom getting out of the bed and leaving the hotel room. But wait, there’s my scooter. So my choices are, postpone Downtown Disney until a different day and hope that I am feeling better or not give in to my fears and take the scooter to dinner.

Have I mentioned that this is our HONEYMOON?!?

So I have rented a scooter for the week that we are at Disney. Why? Because I have decided that the possibility of enjoying our honeymoon more fully AND making the experience better not only for myself, but for my husband, is much more important than giving in. I’m not talking about the giving in to the illness, but rather the giving in to my fear. Because not renting/using a scooter and then not being able to do what I (we) want to do IS letting the illness win. It is taking a gamble on letting this thing called Sjögren’s dictate how we are going to enjoy this precious time together. That is not acceptable to me. Because like I said, I’m a fighter.

                     *********************************************************

If anyone out there has any experiences with using a scooter in Disney, please share your experiences in the comment section below. I am open to hearing about both good and bad experiences because your experiences could help me to have a better one. Thank you.

Excerpt From Tales From The Dry Side

July 15, 2013 / / 4 Comments

It is pretty common knowledge by now that I have written a book called Tales From The Dry Side: The Personal Stories Behind The Autoimmune Illness Sjögren’s Syndrome. It is a compilation of thirteen personal stories told by people with Sjögren’s syndrome. I am attempting to self publish the book through a company called Outskirts Press and I am doing a funding campaign through Kickstarter.com in order to get the book published.

Kickstarter works as a rewards system funding platform which means that financial contributors can elect to receive a reward from the author based on their donation level. Rewards start at $25 but the minimum donation is only $1.00. In order to donate you must sign up on Kickstarter and have an Amazon account because Amazon handles the money exchange at the end of the project which in this case is August 3rd at 5:30pm. If you do not have an Amazon account, it is very easy to sign up for one. I have been told by contributors that the entire process takes anywhere from 2-10 minutes depending on whether or not you have an Amazon account. Your credit card (via Amazon) does not get charged unless I raise the entire $7000 by August 3rd. if I do not raise the entire amount, you get charged nothing. You can read more about the book and the Kickstarter campaign on my Kickstarter page by clicking HERE.

To date, 43% of the funds needed have been raised. There are twenty more days to raise the money.

A lot of people have put a lot of hard work into these stories and into trying to get this book published. If you think you might be interested in donating but are not quite sure, the following is an excerpt from chapter 13 of the book entitled “Christine”:

“Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence.” ~ Helen Keller

I clearly remember the day it all started. It was the week between Christmas and New Year’s 2008. I tried to get out of bed and all I felt was terrible pain in my ankles and wrists. It was like someone was chiseling through my joints. I had never experienced anything like this pain before and it didn’t make sense because the previous day, I had been fine. I got out of my bed and found it difficult to even move my legs. This was only the beginning of my journey. The journey that changed my life forever.

I tell my doctors that this is when my Sjӧgren’s symptoms started but looking back, I am not so sure that is accurate. I had been plagued for almost a year before this with left hip pain that was finally diagnosed as sacroiliac (SI) joint dysfunction and was permanently relieved by a steroid injection into the SI joint. My ophthalmologist had noticed two years prior that my eyes were starting to become dry and had suggested using eye drops. I blew off this suggestion. What was a little eye dryness anyways? I didn’t even notice it. Oh, what I used to take for granted.

I was thirty-six years old at the time the joint pain started, was married with no children. I owned a home, and worked as a pediatric nurse at a children’s hospital in Connecticut. Up until this point I had a complicated medical history as I was diagnosed and successfully treated for Hodgkin’s lymphoma at twenty-four years old, had undergone a cardiac ablation for a heart arrhythmia at thirty-one, and was also diagnosed with a blood clotting disorder called Factor V Leiden. I also had hypothyroidism. I truly believed that this sudden onset of joint pain was just another issue to be dealt with and resolved.

I sought out medical help right away for the joint pain as I was finding it difficult to walk and use my hands. My primary care doctor at the time worked me up for every possible thing she could think of including celiac disease, Lyme disease, other autoimmune diseases, the list went on and on. Tests and labs came back negative. My pain got worse and on top of it, I started to become more and more tired. Not your typical I didn’t sleep enough tired but rather that body numbing fatigue that makes every activity and movement difficult. I was sent to see other specialists including an endocrinologist and a rheumatologist but nothing could be found. This went on for months and months. Doctor after doctor visit, I would leave in tears and feeling frustrated.

I had a great amount of confidence in the doctor, a physiologist, who had diagnosed and treated my SI joint dysfunction and I sought his help. He decided to do a five day course of steroids (prednisone) and all of a sudden, I was a new person. At this point, as a nurse, I was convinced that I had an autoimmune disorder but I was assured over and over again by several rheumatologists, three of them in all, that I did not, despite my positive response to the steroids.
As time passed, my list of puzzling symptoms increased significantly. Respiratory difficulties landed me in the emergency room or admitted to the hospital. I experienced severe joint pain, numbness and tingling in my legs and hands, voice hoarseness, rashes, chills, severe fatigue, abdominal pain, and ulcers in my nose. Yet no one could tell me what was wrong with me because for the most part, my labs and tests were normal. I also had a relatively recent history of depression and anxiety, now thought to possibly be Sjӧgren’s related, and it was suggested that the root of my problems was psychiatric and not physical. It still saddens me to this day that no one thought it might be the other way around.

 

Keep Going

May 13, 2013 / / 12 Comments

There are very few people who follow my blog or who are even in my life who know the extent of the disaster my life was from about 2001 through 2009. I was in a destructive marriage with a man who was abusive, an alcoholic, had PTSD, and was just a difficult person to live with. A man who decided about two years into our marriage that he did not want children. I had distanced myself from some of my family and many of my friends. I held a job that I loved but yet found very stressful. For some of those years I was seventy-seven pounds heavier than I am now. I had a food addiction and low self-esteem. There were many times when I considered suicide and the threat was real enough that I was hospitalized several times for depression. For a period of time, I was even considered to have bipolar disorder and I was trialed on every class of psychiatric medications that existed. The diagnosis was later retracted by the same psychiatrist who diagnosed me and my mood issues were thought to be the beginning of my autoimmune disorder, coupled with significant environmental stressors. Then the physical symptoms of my autoimmune illness began.

2008-2009 found me very sick with Sjogren’s syndrome. I eventually ran out of sick time and FMLA and lost my job. On the day that my ex-husband threatened me and I thought he was going to be physically violent because he was so drunk, I told him we were done. I got divorced and lost my home. I lost one of my beloved dogs. No job, no home, no kids, no health, no marriage…no nothing.

But wait, I did have something. I had God. I had my family. I had a few friends.

I had myself.

So why am I even bothering to tell you all this six days before I marry my second husband? Because I want people to know. I want to tell anyone reading this who thinks that the only way out is through suicide that there is always a better way out. There is help out there. You can change your situation. The feeling of hopelessness you have now does not mean that things can not get better.

My upcoming marriage has stirred up a lot of emotions recently. Obviously that is due in part to the fact that I am marrying this incredible man who is my best friend and whom I love with all my heart. But the emotions are also there because over the past few weeks, I have stopped to think about where I am and how far I have come. Because at some point I stopped letting myself be a victim. I dealt with my depression and anxiety. I saw a therapist. I developed a positive attitude. An attitude that got me through some pretty dark days. I worked on my relationship with God and with myself. Step by step I made changes in my life that enabled me to be a whole person rather than the empty shell of one that I was during those years.

I still struggle with health issues. I still struggle at times with my self esteem. But at the end of the day I like the face of the person looking back at me in the mirror. Sometimes it is hard for me to think back on the past and even believe that was me. However I have to look back from time to time because those experiences have helped make me the courageous and determined individual I am today.

I am at peace.
I am happy.

So please don’t give up. You are worth more than the sum of your bad experiences. God has put you in this world for a reason. The reason may not be apparent to you now. It may never be apparent to you but I promise you, your presence in this world will make a difference to somebody.

Be strong.
Keep going.

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