For Everything There is a Season

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

Category: fatigue (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.

My Sjögren’s World

February 7, 2017 / / 11 Comments

It’s been a while since I’ve done a Sjögren’s blog update. That is both a good thing and a bad thing. Good because it means I have been somewhat successful in putting some mental distance between me and this life altering illness, but it is also bad because I am a firm believer in connecting with other Sjögren’s patients and sharing our insights into how to live as well as possible with Sjögren’s.

Recently, I was asked by the Sjögren’s Syndrome Foundation to be part of a group of Sjögren’s patients piloting a new patient website message board. I have checked out other patient message boards, Facebook groups, etc., but I have only really found myself connected to one other particular Facebook group called Sjögren’s Sisters (if you need help finding it, send me an e-mail or message me on Facebook). So, I was really curious about this new project.

I enjoy doing volunteer type stuff for the SSF, but oftentimes I run into problems with committing physically to projects. Kind of ironic, isn’t it? You want to help the non-profit that does good for your illness, but your illness holds you back. But this project is time limited and I never have to leave my couch or bed to help with it. That’s a win for me!

The project has linked me up with eleven or so other Sjögren’s patients and we exchange information regarding living with our illness and the various challenges that come with that. It’s such a great resource. We are still in the trial phase and once we go live, I will definitely share the information on this blog, so stay tuned.

The project couldn’t have come at a better time for me. Sjögren’s has been overwhelming me lately. My body has been overwhelming me lately. And by lately, I mean for about six months. I am experiencing so many symptoms lately and I don’t even know for sure which are autoimmune related and which are not, although my guess is, most of them are related somehow, some way. Because of all the symptoms, I have had to cancel out on commitments a lot more than usual and while I can be a homebody as much as any introvert, I am spending way more time at home and in bed than I would like. Isolation can be a killer for sure.

So this is what has been going on lately in my Sjögren’s world:

Last April my rheumatologist and I decided to try a medication called Orencia. For those of you who don’t already know this, Sjögren’s syndrome does not have a cure. It doesn’t even have any treatment designed to treat it. Instead we have to depend on medications used for other autoimmune illnesses and then pray and hope that we will be lucky enough to have one of them help us.

Orencia (abatacept) is a biologic medication often used to treat RA (rheumatoid arthritis). RA and Sjögren’s have several symptoms in common. For me, the symptoms I needed the most help with at the time were joint/muscle pain and fatigue. I had to get an insurance prior authorization to do the injections at home, but then we found out that my “copay” was going to be $1500/month. $1500!! We then decided that I would drive the four hour round trip to Boston every month to receive an IV infusion of Orencia instead. Cost to me: $30 for gas, tolls, parking, and water. After the first few months of doing this, my local pulmonologist agreed to oversee the infusions at my local, community hospital so thankfully, my commute has gone from four hours round trip to one hour.

I am very medication sensitive. Right after the end of my first infusion, I did have a minor reaction but since then I have had no adverse effects. This is highly unusual for me so I was determined to give this medication a fair shot.

I did notice some improvement about three or four months after starting the infusions. However in the past few months, I have been on and off the fence about how well it works for me. When I saw my rheumatologist right after Christmas, she thought it was helping because my joint swelling was pretty much gone, but I had also just finished three weeks of prednisone so it is hard to say for sure. I do think on most days, Orencia has helped with some of my joint pain, especially in my fingers, wrists, elbows, knees, and toes.

It has not helped my fatigue though and that is where I am really struggling right now. Fatigue has always been a struggle for me with this disease, but I cannot believe how bad it has gotten recently. At the moment, I do think some of it can be attributed to a respiratory infection/cold that I am trying to recover from, but it is definitely more than that. I am not exaggerating when I say that I have to mentally talk myself through even the most basic of tasks because my body just doesn’t want to move. Showering, cooking, even getting from the bedroom to the bathroom to brush my teeth before bed. It’s not than I am necessarily tired and want to sleep all the time. It’s more like my body is stuck in quicksand or I am constantly trying to swim upstream…the entire day that I am awake. Every task and movement is me mentally rallying myself to just get up and do it; convincing myself that nothing can keep me down. But the reality is, I am down. There ARE times where I just can’t do it.

The biggest problem with this?

The less I am out in the world and the less I can do, the more I struggle with my mood. It’s a known fact that people with chronic illnesses have higher rates of depression and so while I am fighting every minute of the day to work through the fatigue, I am also fighting to keep myself upbeat and optimistic.

Muscle pain, dry eyes, dry mouth, nose sores, headaches, and peripheral neuropathy-like symptoms (foot pain) are a daily occurrence lately. The esophageal motility disorder that showed up a few years ago, and then went away, is showing signs that it might become an unmanageable problem again, but I can’t bear the thought of making yet another doctor’s appointment in Boston. So instead, I try to eat foods that are easier to swallow. This week I go to Boston to get my salivary and parotid glands expressed and a few weeks after that, ultrasound of my shoulders because for some reason, they have been getting more and more painful.

I haven’t been able to sit without being in a lot of pain since August and since December, that pain has progressed to my rectum and you can only imagine what kind of havoc that has wreaked on some of my bodily functions. Originally it was thought that it was an orthopedic issue…nope. Then a gastroenterology issue…nope. Well, at least that is what I have been told. I’m not 100% convinced of either. So now it has been brought up that maybe it IS a Sjögren’s related issue after all, specifically a sacral neuropathy. As I write this, I am awaiting a call back from a neurologist in Boston who specializes in these things. I don’t know if he is going to have any answers. Meanwhile, I keep upping my meditation practice to try and deal with the pain and the anxiety over the fact that the tailbone issues may NEVER go away. By the way, if any of you have experience with that, I would appreciate hearing about your experiences and what helped you, if anything.

So what’s a girl to do? It’s like any adverse situation: you fight or you give up. I’d like to say that giving up is not an option, but we all know it is. Luckily for me, right now, it is not. And honestly, oftentimes the only reason that it is not an option is because I know how much I am loved. And I know that I still have work to do in this world; work that is important. In terms of giving up on dealing with my illness and symptoms, that is not an option either. I know that Sjögren’s can be progressive and I am only 45…that’s a lot of years left for things to get worse. So I need to be as on top of things as I can. I will be honest, lately I have thought about what it would be like to just stop all my medications, all the painful procedures, and all the appointments, but like I said, I am loved and I have important work to do.

For my physical body, I employ as many complementary treatments as I can afford and which work. Yoga, massage, exercise, diet, and meditation are the biggies that I can think of. Even if I sometimes feel that these treatments don’t help me physically, they always help me mentally. There is always the option for me to start up yet another course of prednisone, but I am trying to avoid that as long as possible.

My answer right now is to do the best I can. I work as a substitute school nurse and when they call, I try to go into work as much as I can because at the end of the day, I am more than a patient, I am also a nurse and a pretty good one at that. Yes, it’s usually hell getting through the day and yes, I feel like death after work, oftentimes for days, but I know that for me, work is a necessary part of trying to normalize my life, even if it is only for a few hours or days a month.

I try to put myself in situations where I am helping other people. I volunteer for the American Cancer Society, the Sjögren’s Syndrome Foundation, and my church. Sometimes that means going for months without being able to do anything to help at all, but doing whatever little good we can do in this world is so much better than doing nothing at all.

I work very hard at trying to appreciate what I do have and what is going right in my life. It may not look how I envisioned it to look in some aspects, but in many other aspects, life has turned out so much better than I thought. So I am going to keep trudging along and no matter what, always keep the hope.

Making Life Work

August 11, 2015 / / 6 Comments

So it’s about 4pm on a weeknight and I just finished cooking part of tonight’s dinner. And, that’s late for me. I’m usually done earlier than 4pm, depending on how much I am cooking.

I know, it’s weird.
And I am finally OK with that.

We don’t eat supper that early. Usually we eat anytime between 5-6:30pm. For me, the earlier the better, but my husband does have a regular full-time job and well, he works until 5pm, at least. So it is pretty common for me to pre-cook dinner and then just nuke it when we are ready to sit down and eat. Because the reality is, if it doesn’t get cooked early, there may be no supper. Except maybe cereal. Or take-out. And well, a healthy eating plan doesn’t involve much of either of those. I don’t know what people with chronic illnesses did before the invention of the microwave!

This is just one of the many accommodations I have had to figure out and accept since I realized that my energy levels are going to be unpredictable…like, for the rest of my life. Pre-Sjögren’s, I would have the typical mid-afternoon energy slump like everyone else, and then would bounce right back. But autoimmune disease redefines the meaning of the word fatigue. We are talking mind-numbing, body stopping, I can’t take another step or blink my eye kind of exhaustion. There is oftentimes no warning and when it hits, look out. For some of us, it’s a constant, pervasive kind of tiredness.

In the past, I would ignore the warning signals my body was attempting to give me. I was too busy trying to function as a person without an illness, in a busy world where chronic illness is usually not accepted or understood. In a world where the motto is “go, go, go”, no matter what the price to our bodies may be. Just keep caffeinating. Just keep doing. And then I would get frustrated that my body couldn’t keep up.

As the years go by, the fatigue issues has become more of an issue for me during the day. I started to notice that in the mornings, when many people with autoimmune illness are at their worst, I would be at my best. Maybe not always pain-wise, but definitely energy wise. I noticed a trend when I started working that there is a very specific time in the afternoon when I start to go downhill. When I sub (as a school nurse) at the high school, I have the most energy. Those hours are from 7:25am to 2pm. The elementary school is the most difficult for me and those hours are 8:30am to 3:15pm. I notice that I can predict a significant increase in my fatigue beginning around 2pm.

That is the first shift in energy levels. The second starts sometime after 5pm. It’s all downhill from there and by 6pm, I render myself pretty useless. I am typically in my pajamas by suppertime. Nighttime activities have become harder and harder. I recently dropped out of a twelve week choir class because the 7-9pm weekly class was killing me. Evening church activities, conference calls, and meetings, for various things, have become something that I have had to rethink in terms of priorities. Up until very recently, I continued to do these things, despite the obvious detriment to my overall health.

There are some occasions where I can push past the fatigue to get myself to an evening event and even enjoy myself. I have come to realize that this is usually during an event I am really excited about such as a friend’s party, concert I’ve really wanting to see, etc. After a little research on that, I found out that the chemical hormones that are released when someone is excited about doing something actually have a positive influence on a person’s physical well being. Honestly, I think that is the only reason I can get myself to an 8pm concert! However the ramifications of those evening events are high, sometimes too high.

I have recently decided that for now, I am going to start scheduling my appointments, friend dates, etc.around what my body is telling me, as often as possible Nowadays, I wake up and am ready to roll between 6:30-7am and by 2-3pm, I’m done. Instead of pushing past those limits every single day, I’ve started to respect them. The problem is, the rest of the world doesn’t always respect them or understand. Let’s face it, in this country anyways, most social functions take place after 5pm and on weekends.

My husband and I go to a lot of concerts together and honestly, sometimes it is incredibly difficult. It will say that the concert start time is 7 or 8pm when in reality, the main act doesn’t get rolling until 9pm. We recently went to an afternoon concert that started at 2pm and it was truly one of the best times I have had with him and some other friends of ours. I was alert and able to concentrate. I wasn’t so focused on how exhausted I was and my pain levels was manageable. I had a lot of fun. Same thing for a recent afternoon Red Sox game, which started in the afternoon instead of the evening. A few hours difference can make or break a day for me and just as importantly, make or break the rest of the week.The running joke between my husband and I is that whenever there is an evening social event, no matter what time it starts, we have to be out of the house by 4pm so I can keep some momentum going!

Another example is from this morning. I had a close friend over for a visit. She’s an early riser as well and we were eating breakfast together and chatting at my house at 9am. I can actually remember everything she said to me because that mind numbing fatigue hadn’t set in yet.

I know there are going to be exceptions and I will occasionally have to make concessions. And,I don’t expect the world to completely function according to my illness needs. But that being said, I have recently realized that I also have the choice to say no. Last week, I think I used the word “no” more often than in the previous six months combined. But, that’s a topic for another post! The point is, I get to choose what is best for me. If it sometimes, or often, means missing out on things I would normally want to attend, then so be it. The right people will understand.

I recently said something to my husband about this. It was a Saturday night and we were home together watching TV. It was about 7pm and I couldn’t hold my head up any longer. So I asked him if he would go to bed early with me. I’m not usually sleeping at 7pm, but I am resting in bed. I felt bad because it was a Saturday night and that had been happening a lot lately. And I told him that…that I felt bad he doesn’t stay up late like he used to before we started dating, because he wants to spend time with me. His response was profound and basically he said that altering his lifestyle/routine to accommodate me was better than not being with me. Again, the right people will understand.

Since I’ve started listening to my body more and making adjustments, I have noticed that I am much more productive during that 6:30am-2pm time frame. Because I am rested. It’s not a lot of time to work with and once school starts in September, it will be even much less so. But, the house has been cleaner, I’m getting more errands done, and I am spending more time at the gym. I am more tuned in to people and I am remembering more of my conversations with other people.

Is this the way I would have chosen to live my life? No. I’d rather not have Sjögren’s at all. I’d rather live a life like I used to: sleeping eight hours a day and then being able to function throughout the remaining sixteen hours, without exception. But rather than being a victim, I’m working on figuring out what DOES work for me. You can do a lot of living in just seven hours a day. And honestly, many days, it’s even less than that. My days may not have a lot of quantity, but they most certainly have a lot of quality.

Sjögren’s and Fatigue

March 5, 2015 / / 0 Comments

A few days ago, I posted a status update on the Thoughts and Ramblings Facebook page asking those with Sjögren’s/chronic illness if they could pick just one symptom to get rid of for the rest of their lives, what would it be. I knew what the answer would be for me, which was going to be the basis for this blog entry, but I wanted to see if others with Sjögren’s felt the same way.

I was taken aback by how many responses I received with that poll and it was clear to me by the responses that fatigue was the clear winner; which is also the case for me. That relentless, brain-numbing fatigue that most people without a chronic illness typically cannot understand.

There was an article put out by the Sjögren’s Syndrome Foundation last year that for the first time I have read, did an excellent job of describing the different types of fatigue encountered by those of us with Sjögren’s syndrome. The title of the article was: 13 Types of Sjögren’s Fatigue by Teri Rumpf, PhD. The article does and excellent job and you can read it by clicking on the article title link above.

For me, as for so many of us, the Sjögren’s related fatigue that comes with this illness is often the most debilitating symptom we have to deal with, day after day, week after week. It affects every single aspect of our lives and even worse, fatigue is often misunderstood not only by the other people in our lives, but also by our medical providers. It is one of those invisible illness symptoms that is usually not outwardly obvious to other people. Or on the flip side of it, people think they do understand what the fatigue is like because they too have experienced “tiredness.”

I’m here to tell you that illness related fatigue is nothing like being tired.
Nothing.

I remember the days, before I became ill, when I worked as a registered nurse on a busy pediatric nurse, often on my feet for most of my twelve (more like thirteen-fourteen) hour shift and then commuting an hour each way to work. I remember the years I worked the night shift and could barely remember my drives home because I was that tired. Exhausted is probably a better word.

But fatigue is different for me than tiredness or exhaustion.It is that feeling that I physically cannot take another step, even if my life depended on it. Sometimes it is predictable and sometimes it is not. An example of this is that if I work two consecutive days at my current job, it is pretty much guaranteed that sometime in the following forty-eight hours, the fatigue will consume me. That is predictable.

An unpredictable example is going out with friends on a weekend evening, which happened to me recently. I had made sure I got enough rest for twenty-four hours before we went out. I was in good shape for the first few hours, but halfway through a concert, at an intermission, the fatigue hit me like a freight train and I almost actually fell asleep during the intermission while sitting in my chair! I really thought I had my bases covered, but that night, the fatigue won.

And that’s the problem, many times the fatigue does win. It very much affects my work life, what little I do have of one. It affects all my personal relationships and definitely my social life. And, it is frustrating as all hell. Because when you are fatigued, everything else is worse and I mean everything. It impacts my pain levels, my other physical symptoms, and definitely my ability to cope. It contributes to anxiety and depression and overall can cause a feeling of hopelessness.

I would say that fatigue is probably the issue I have had to work the hardest at and it has taken me the better part of the last seven years to do so. Working on it doesn’t mean I can get rid of it, but it does mean that I am able to live better with it and improve the quality of my life. It means that even though I hate it with a passion, it does not always win. And the times it does, it does and I move on.

There are a few strategies that I have used to help me manage my fatigue more effectively. One of the most important is planning ahead of time and prioritizing. Planning meaning not just my activities, but my rest as well. That is hard for me because when I am feeling less fatigued, I want to get as much done as possible. However I have found that for me, the fatigue is cumulative and rest periods every day are critical in managing it.

Another important component to managing my fatigue is diet and exercise. I cannot emphasize this enough. And oftentimes, I need to emphasize this even with myself because it is an area that I can easily neglect. I have found a significant improvement in my fatigue levels when I exercise three to five times a week and cut out processed sugar, gluten, and processed foods. The exercise doesn’t even have to be much, maybe a fifteen minute walk or a half hour of gentle stretching. I just have to move my body.

I also need to listen to the fatigue. When its here, its here. Yes, there are some things I have to push through, like finishing a shift at work. But otherwise, I listen to my body and give it the rest it is screaming for. I find that most times when I do this, I recover more quickly than if I did not listen to my body and kept barreling through my day.

Lately, my fatigue has been more manageable for me and while I know that how I manage it is a crucial component, I have also been finding some relief lately since being on a steady dose of low-dose naltrexone (LDN) and increasing one of my thyroid medications. I always encourage people to talk to their doctors about checking their thyroid and also exploring any other possible causes of fatigue such as adrenal exhaustion, etc.

What techniques and management strategies have you used to help manage your illness related fatigue?

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.

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