For Everything There is a Season

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

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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.

Our Wedding Vows

September 12, 2013 / / 0 Comments

During my fall cleaning this week I came across our wedding vows. I thought it was quite appropriate since we are leaving in thirteen days for our honeymoon. Looking at each of our vows on paper is interesting because it reflects each of our personalities, especially in the length. It was also interesting because I think I didn’t take all that much longer to recite my vows because I talked so much faster!Enjoy.

Chuck’s Wedding Vows:

Christine, you are the one for whom I waited and I take you as my wife today, my lifelong friend, love, and partner.

I promise to support you in all that you do, to encourage you, and to try and inspire you.

I promise to care for you when you need it and to let you take care of me when I’m in need.

I promise to try to make you laugh, and try harder not to make you cry.

I promise to always listen to your questions and concerns, and to try really hard to respond to them in a timely fashion.

I promise to always appreciate how lucky I am, to love you, and to show that love to you each and every day, in the winter as well as the summer, and on rainy days as well as sunny ones, forever.

All I have, all that I am, all that I will be, is yours.

Chris’s Wedding Vows

Love by Roy Croft
I love you not only for what you are but for what I am when I am with you.
I love you not only for what you have made of yourself but for what you are making of me.
I love you for the part of me that you bring out.
I love you for putting your hand into my heaped-up heart
And passing over all the foolish, weak things that you can’t help dimly seeing there
And for drawing out into the light all the beautiful belongings that no one else had looked quite far enough to find.
I love you because you are helping me to make of the lumber of my life
Not a tavern, but a temple.
Out of the works of my every day
Not a reproach, but a song.
I love you because you have done more than any creed could have done to make me good
And more than any fate could have done to make me happy.
You have done it without a touch, without a word, without a sign.
You have done it by being yourself.

So I Christine, take you Chuck, to be my husband. For better or for worse, for richer or for poorer, in sickness and in health. On this day I promise to be faithful and true to you and only you.

I promise to step outside of myself in order to meet your needs and our needs as a couple.

I also promise to never interrupt or start a conversation during a Celtics play-off game. But only the play off games.

I promise you that I will never take our love for granted.

I promise, from this day forward, to never ever complain about you messing up my bed pillows at night, when all you want to do is be close to me.

I promise that whenever necessary, I will put your children’s needs before my own.

I promise to treat your children and their sisters with the same amount of caring and respect that you treat them with.

I promise to trust you implicitly and without reservation.

I promise to always be your best friend. The person you can count on to confide in and to lift you up when you are down. I will be the gentle hand in the middle of the night and your port in every storm. I promise to do my best to make the rest of our lives together full of joy and laughter. I will always honor our marriage and I will love you all the days of my life.

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.

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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.

No Answers

August 20, 2013 / / 6 Comments

As I have mentioned on this blog and on social media, I have been struggling with issues with my bladder on and off since last year but significantly since the second week in June of this year. Pelvic pain, especially when I void, as well as frequency and urgency. I have to say out that of all the pain I have endured in the past few years, this has been some of the worst.

As I also previously mentioned in my last entry I think, I am seeing a urologist at Lahey Clinic. I saw him the first time two weeks ago and he thought I have Interstitial Cystitis (IC), a very painful bladder disorder that can be related to Sjögren’s. I was then back in his office last week seeing a nurse practitioner on an urgent basis because my symptoms were so severe. She immediately got me scheduled for a cystoscopy with hydrodistension yesterday to try and confirm the diagnosis and treat the symptoms with the hydrodistension.

So I went in yesterday for day surgery because they do this under general anesthesia. Routine for them. Not so much for me. I think I have only had anesthesia two or three other times. All other procedures have been with sedation only. I was glad to be going under general because I know how painful the procedure is but its scary once you get on that operating room table and know that you have no control over what is going to happen to you. Especially when you are going to be in a vulnerable position on the table. I wasn’t concerned about the anesthesia going bad but lets face it, I tend to get weird illnesses and complications from things like this so my biggest worry was that I would get a blood clot or something like that.

Everything went well though. The staff there were amazing. I got to meet my new urologist because the original one I saw is retiring soon. I was very impressed with the handle they had on my history since none of them knew me before yesterday. There was a little glitch because a nurse came to give me heparin (I have a clotting disorder and have had blood clots) and my hematologist had told me NOT to have any blood thinners for this procedure. I told the nurse that and she got the resident right away who said that indeed, I was not to get heparin. They did give me an antibiotic and a dose of Decadron which is a steroid. I think it may have been because I have new onset asthma but I don’t care what the reason was, I was happy because I have been needing steroids for a while now. I also told the nurse anesthetist that sometimes I vomit from sedation or anesthesia so they gave me a cocktail of meds before I even went in to avoid that. I’m not sure why nobody else has ever done that. Similar to how he gave me a quick tiny shot of local anesthetic before putting my IV in. They are big on comfort at this hospital. Works for me.

I was in the OR for about thirty minutes. I remember waking up sobbing and shivering, both of which had happened before and its just from coming out of the anesthesia. I guess it took longer for me to recover than anticipated and my husband was a bit worried. The doctor had come out to talk to him after surgery but then he waited an unusual amount of time to get to see me. Although I felt like I was doing OK right from the start of the recovery process, my heart rate and respiratory rate were quite low for me which is probably why they gave me more time. They gave me some pain meds and then crackers and milk afterwards and all went well from there.

Except for one thing.

They couldn’t see any evidence of IC during my procedure. I mean nothing. Typically people with IC have a much smaller bladder capacity and show bleeding and ulcerations. Nope, not me. Now the doctor saw that I was getting a bit upset because who can blame me? I have had these symptoms for almost a year and things have been pretty bad lately. I also underwent an invasive procedure. From what I have read, you can still have IC with a negative procedure but its not common. I didn’t get into discussing it with him because I wasn’t thinking all that straight after surgery but I will discuss it more with him later. He did say that its a great thing to NOT have IC which I agree with. It is just hard not having any answers when something is so greatly affecting your life.

We decided on a follow up appointment in two weeks and he told me that we would figure this out and that did make me feel better. He also said there was a possibility that this is gyn related so this morning I worked on getting release forms sent back and forth to get records to my gynecologist so they will give me an appointment.

Meanwhile I am home sleeping off the meds and anesthesia and resting. My joints feel great. I think it is because of the Decadron they gave me yesterday. The pain I am having from before the surgery and because of the surgery is tolerable with pain meds. I expected to have MUCH more pain today since I was forewarned about that but maybe I don’t because there were no ulcers or anything else wrong with my bladder. That’s a good thing.

So I am almost back to square one with my honeymoon about a month away but I am just going to try and keep the faith and continue to surround myself with the love and support I have been receiving from so many people.

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