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Whole 30 Autoimmune Protocol

January 16, 2014 / / 3 Comments

I feel like revamping my diet is a constant and ever evolving process. I don’t mean “diet” as in a weight loss program, but in terms of using proper diet to treat my Sjögren’s syndrome. About a year ago, I embarked on a Paleo eating plan, with the first month dedicated to the autoimmune protocol of the Paleo plan. The autoimmune protocol of any plan is super strict and is not even a diet. You can find an excellent explanation of the autoimmune protocol (AIP) HERE. It is a thirty day elimination period of the foods that are most thought to cause inflammation in the body. Due to a death in my family on Day 2, things did not go well. I know it is an excuse, but the amount of stress I was under was off the charts. I did however stick with the Paleo plan for the first half of the year, and I had some good results from it when I was compliant: most notably less pain and fatigue.

Things pretty much went to hell for me in the nutrition department (I like that word better than diet) when I went to Disney for my honeymoon. We came back the beginning of October 2013, the holidays came, etc. The worse I ate, the worse I felt. At first, it wasn’t noticeable because I was on a hefty dose of prednisone to quiet down some symptoms prior to my honeymoon, but as I started weaning the prednisone, it became apparent that my  food was affecting my health.

Part of the issue is not autoimmune related at all. At least I don’t think it is. Once I came back from Disney, I began to realize that some of my food issues had resurfaced. By “issues” I mean addictions to certain foods. I know being on the prednisone didn’t help with this, but things seemed to be worse. I was constantly craving processed food that were laden with carbs, sugar, and the such. This was not a new issue for me, but it seemed like now, the more I ate these foods, the worse I craved them. My weight creeped up and up and I felt like I was no longer in control. I know part of the carb cravings was related to the prednisone and that a lot of the foods I was eating are MADE to be addictive (i.e. McDonald’s), but at the end of the day, it was still my decision to eat them. They were my choices and I was making some poor ones at that.

Meanwhile, since coming back from Disney, I had started exercising on a regular basis because I was on prednisone and that afforded me the ability to be able to do more with my body. The exercise actually helps my autoimmune symptoms, but I began to wonder about how much better I could feel if I reeled in my diet again. On a blog I follow, I read about the book: It Starts With Food by Dallas and Melissa Hartwig. This book changed my life. Seriously.

It Starts With Food talks about the Whole 30 eating plan which is basically a Paleo diet with some tweaks, mostly eliminating any type of sugars (except in fruit and veggies). The premise of the whole plan is that you need to eat whole foods in order to optimize your body’s health. While Paleo talks about how our ancestors ate as a premise for the eating plan, the Whole 30 talks a lot about the effects that these processed foods have on our bodies. It is a no-nonsense approach to getting healthy. No excuses.

I decided that I was going to do a Whole 30 (meaning you do the plan for 30 days with absolutely no cheating) and I was going to step it up by adding in the autoimmune protocol of the Whole 30. My plan was to start the day after Christmas but I had my first race, a 5K, scheduled for New Year’s Day and the authors suggested not starting a Whole 30 before any big physical event, because the plan itself can take a toll on your physical body the first two weeks. As much as I HATE starting a new lifestyle change on New Year’s, that was my start date.

Today is Day 16 for me. I will be honest, most of the 16 days have been pure hell because really, this is HARD!! I have a few expletives for it, but I will try and refrain…for now. Being on a Whole 30 AIP means I can eat only certain foods for 30 days and then I can start to reintroduce some healthy foods I omitted over a period of a few months to see if my body can tolerate them. By reintroduce, I mean like eggs, nuts, and seeds….not pizza, soda, or bread.

What I can eat: meats (chicken, turkey, beef, fish); all vegetables except eggplant, potatoes, tomatoes, and all forms of peppers except black pepper; fruits; and healthy fats such as coconut oil and olive oil. Oh, and spices that are not seed or pepper based. That one gets tricky!

Yeap, that’s it.

No grains of any sort, no dairy, eggs, nuts, seeds, sugar, artificial sweeteners, sauces, additives of any type. I am sure I am forgetting some things, but you get the gist.

And this means I cook, ALL THE TIME! It is insane how much I have used my kitchen lately.I try to double up my cooking so I have something to eat for breakfast and lunch the next day, but when you are making your own salad dressings (olive oil only!) and cannot grab a protein bar when you are starving after a run, it gets tricky…and time consuming. Cheating is not allowed because even the slightest bite of an inflammatory food can have a negative effect on your gut, which is thought to be the primary source of injury in autoimmune illness. Eating out is next to impossible although I was able to twice at Red Robin. I knew they were probably cooking in forbidden oils such as canola or safflower oil, but I didn’t think that would be enough to trigger me. And, I had to protect my sanity.

The first ten days or so was a nightmare for me, physically and emotionally. I had physical withdrawal symptoms, despite having had cut out gluten and dairy after Christmas. These symptoms included dizziness, dehydration, increased fatigue, headaches, and joint pain. For several days, it felt like my blood sugar was dropping several times a day. I stopped doing all exercise for the first week until I felt that things were more stable. I became extremely moody and restless as I started to crave all the unhealthy foods I was previously dumping into my body. Honestly, I couldn’t even be in the same room as some of my trigger foods such as pizza, chocolate, even gluten-free bread!! I even went as far as asking my husband to take some Kit Kats we had gotten at Christmas to work with him. He forgot. I was home alone. I tossed them in the trash. Swear to God.

Things have gotten better though. The physical symptoms went away and despite weaning down my prednisone from 20 mg/day to 10 mg/day over the course of the past few months, my autoimmune symptoms are actually improving. The improvements have not been that drastic yet, except for my sleep. I am sleeping like a rock most nights for one of the first times in four years. I even dream now! And as anyone with an autoimmune illness knows, more sleep=less symptoms. Despite increasing my running mileage, most of my muscles and joints are pain-free on most days.My energy level has improved and despite having some mild respiratory issues around the holidays, my breathing is now 100% fine. No migraines and my mood is on an even keel. I have not noticed an improvement yet in my Raynaud’s or dryness issues and I would say that my dryness issues are even a bit worse. But it is January in New England; that is what always happens to me.

The past forty-eight hours has seen a dramatic improvement in my food cravings. This has been quite the blessing. Although temptation is still a challenge more times than I would like, I find that I am not thinking about food so much. I have also become quite a better cook over the past two weeks! It feels freeing to feel in control.

I don’t know what the next few weeks are going to bring, but I am cautiously optimistic. While I do not think that this eating plan will likely “cure” me of Sjögren’s, I am hopeful that it will help control my symptoms enough to further improve my quality of life. Because as hard as this Whole 30 AIP plan is, it’s not half as hard as living with a debilitating, chronic illness.

Running My First Race

January 3, 2014 / / 26 Comments

The start of 2014 was very exciting for me.

Back in early October, when I returned from our honeymoon in Disney, I decided that I wanted to try running so that someday, I could run one of the Disney race events they have every year. I had been taking a good dose of prednisone (20mg) and figured if I ever was going to try running again, this would be the time. I had attempted running a few years ago for a month or two and had to stop because of my joints. In addition to the desire to run through Disney, I was also inspired by two online friends I had met, Lucy and Heidi, who both also have Sjögren’s and have either participated in races, or were planning on doing so.

As I have blogged before, I took the running thing seriously, especially because of my joint, fatigue, and respiratory issues. I read a lot of books, magazines, and online articles about strengthening exercises and I made sure I did regular yoga and Pilates classes, which greatly helped my running and overall health. Sometime in October, I started the Jeff Galloway Easy 5K training program. I highly recommend it if you are a new runner. It is a run/walk program that gradually builds up your stamina and endurance. I found the run/walk concept (I do a 1min./1 min. ratio) to be much less daunting than trying to run an entire distance. I also started regularly using a foam roller for my muscles, which has helped me physically in so many ways besides in terms of my running.

My goal was to run a 5K on January 1st; a race called Gordy’s First Race in Westfield, Massachusetts. I figured it was a good way to start the New Year and yet, gave me enough time to complete the entire Jeff Galloway program. The bottom line is, I don’t know how hard running is for everyone else, but it is very difficult for me and I wanted to make sure I was well-prepared. I also knew that by January, my prednisone dose would be significantly less and that fact worried me a little bit.

Getting race ready!

New Year’s Day was the day of the race. I was doing OK from a physical standpoint, but sleep was hard to come by the night before; not an unusual thing for me unfortunately. And the closer we got to Westfield, the more nervous I became. What on earth did I think I was doing?? A 5K race is not meant for an overweight 40-something year old with severe autoimmune issues. Or so I thought. My husband and I drove to Westfield, got our race bib numbers, and spent some time warming up by jogging/walking for a few minutes. My brother, Dennis, also was running the race with us. By this point, I was hyped up on adrenaline.

Pre-race: my husband, me, and my brother.

I have to say, there is nothing like the atmosphere of a race. I would guess that there were about 200 runners present; some were doing a 5K and some a 10K. I thought it would be better to start at the back of the pack because I am so slow and because I do a combination of running and walking. I told my husband and brother that I wanted them to not worry about running with me and see how well they could do, since they are both in much better physical shape than I am in. It was pretty cool that I then heard someone shouting my name. I looked over at the spectators and there was my mom who had showed up to cheer me on!

Off we went and within about a minute or two, the ENTIRE pack was way ahead of me, except for two women behind me. I suspected that this might happen because I had checked last year’s results and most of these runners appeared to be very fast! I tried to stay focused on my breathing and my stride, but all of a sudden I was faced with one of several hills that occurred the first half of the race. Although I had looked at a course map beforehand, I was surprised by the incline.

This is where I panicked a bit and totally lost focus.
I actually considered turning around I was so panicked.

The problem with panic is that is increases your heart rate and breathing, which for someone like me, who already struggles with that, it makes things a lot worse. It did not help that the temperature was about eighteen degrees and I was running into the wind. That’s what happens when you sign up for a January race in New England!!

As I tackled the hills,I found myself needing to do much shorter intervals of running/walking then in my training runs. I had done a little bit of hill running in my three months of training, but apparently not enough. Then I saw some people standing outside their homes on the race route. And I saw the traffic cops. They were cheering me on. Here I was running by myself (I kind of regretted that!), with nobody around me because I was so behind everyone else, and they were all cheering me on. It helped, a lot. I tried to settle myself down and decided that no matter what happened, I was finishing this race. I worked so hard for this. This was MY race; not anyone else’s. I was only in competition with myself.

Lone ranger!

Because the race was up and back, people started to run towards me on their way back to the finish line. I was not even halfway yet, not even close. I saw my brother run past me and then my husband. He had my asthma inhaler on him and I thought it might help if I took another hit. That was a HUGE mistake. What was I thinking?? All it did was jack up my heart rate some more and didn’t help my breathing. Live and learn.

My husband then decided, against my protests, to do the rest of the race at my side. He wasn’t taking no for an answer. I felt bad because he could have finished well, but to be honest, he was a huge help. As we hit the halfway mark and turned around, other runners would race past us. It was probably obvious that I was struggling, but several of them yelled out words of encouragement to me as the sped past us.

“Keep going!”
“You’re doing great!”
“You can do it!”

It was simply amazing. Let me tell you, if you are a good runner, are experienced at races, and see someone like me struggling, yell something out to them. NEVER underestimate the power of a few words. You never know the challenges someone else is facing when they are attempting to do something like this. So to all those strangers who rooted for me, thank you. I am forever grateful.

Not too long after we started back towards the finish line, I realized that I forgot to check my watch  to see what my pace was. This was the whole point of wearing one; that’s how out-of-sorts I was compared to my training runs! I looked down and realized that I was running a 14-15 minute mile, which was even better than I expected, especially with those hills. I was doing fine if I stopped comparing myself to everyone else. I also came to realize that the two women who were behind me when we started never turned around, which meant that they were doing the 10K and I would probably come in last for the 5K. I put that out of my head and just concentrated on one foot in front of the other.

I knew the finish line was coming and it was important to me to finish strong, but my lungs were on fire. And I mean fire!! My legs held up pretty good, but those lungs…geez. The traffic cops kept cheering us on. The elite runners kept shouting words of encouragement. My husband kept reminding me what I was supposed to do, like breathe. We rounded the corner that led into the front of the school where the finish line was. I knew that I was overdoing it and probably wasn’t getting enough oxygen at this point, but I saw the finish clock all lit up and the banner. I saw my mother and brother at the finish line and honestly, I would drop to the ground at this point before I would stop running.

My goal was to do the race in under 50 minutes. My official time was 45:13. By far, my best time ever, by several minutes.

Finish line!

I will admit, I wasn’t feeling too hot, but I walked around, drank a ton of water. I don’t have any other races to compare this to, but I thought Gordy’s Race was very well run. There was plenty of pizza, hot chocolate, and water afterwards, although since I was starting a new eating plan to help with my autoimmune issues, it was just water for me. We waited around for the race people to post the final results to see if I indeed came in last like I suspected.

I did not come in last. I came in second to last.

Guess who came in last?
My husband.

I was so focused on trying to finish without passing out that I didn’t realize when we crossed the finish line, he had put me in front of himself; just so I wouldn’t be last. Honestly, it wouldn’t have mattered to me at that point. I was so proud to just finish. But the gesture was so unbelievably touching that when I was posting a Facebook update from the car on the way home, I started bawling like a baby. He’s my biggest fan. My biggest champion.

I woke up the next morning feeling different about myself, mentally. The physical effects were still lingering a little, mostly the asthma stuff because really, asthmatics probably should not be running in cold temps like that. But mentally, that was a different story. I felt like I had accomplished something huge. Something that some people told me I would never be able to do. And I did it. Who knows what else I might be able to accomplish physically over the next six months or so. Maybe a longer race. Maybe a faster race. Maybe I can get off prednisone. Maybe I can go back to work.

Running this race, with all those other athletes, made me feel like more than my illness. Instead of cursing my body for what it can’t do, I could feel proud of it for what it can do.

Completely life-altering.

Looking Back And Looking Forward

December 31, 2013 / / 2 Comments

I had a moment yesterday. Like one of those moments (actually, several moments) where you realize something important. I was lying on an exam table, having an abdominal ultrasound done. It wasn’t a big deal, minus the fact that the tech was specifically looking for my gallbladder and that little booger was tough to find. I go for ultrasounds every several months to check a previously suspicious growth that is attached to the gallbladder.

I first found out about this growth in November 2012 when I was hospitalized with dehydration, vomiting, and stomach pain. It ended up that the issue causing my symptoms was an esophageal motility disorder, mostly likely related to Sjögren’s. I also had severe GERD. When they did a bunch of tests to initially find out what was going on, a surgeon appeared in my hospital room telling me that by the way, they also found this thing on my gallbladder that shouldn’t be there and although gallbladder cancer is very rare, we might have to consider surgery to remove the entire gallbladder.

More tests and investigation ensued and the end result was that this “thing” had showed up on a CT scan three years prior. I don’t know if the doctor at the time read the report, but I was never told about it. Yes, you have to love our health care system. But truly, it was good news because by comparing the scans, it was obvious that the growth did not change at all in size or shape during those three years. That made it highly unlikely that this was a cancer of any sorts because to be frank, I would probably be dead. After months of discussion and more scans, it was decided that this was likely something I was born with and since I had no specific gallbladder symptoms, we would just monitor the growth.

At this point, I feel that the continued scans are a bit overkill, but I respect this particular specialist and trust his judgment. I have to tell you though, it was a horrible time for me. I was dealing with the symptoms at hand and this gallbladder scare on top of it. My mother-in-law was very sick at the time and honestly, I don’t even know how my husband and I got through it all.

This brings me back to the exam table yesterday. The tech made a comment about how much easier it was for her because I was good at taking very deep breaths. She jokingly said that I must have a lot of experience doing so.

True enough.

Then this realization hit me. I have had significantly fewer medical appointments over the past few months and the impact of that has been huge. Overall, I am much calmer about my health issues. My last big crisis was over the summer with bladder issues, but things have been quieter since September. I am very well aware of the fact that this is when I started prednisone again, but I don’t think the reason is that important. Although I continue to struggle every day with different Sjögren’s related issues that significantly impact my life, I am not in crisis mode. Looking back over the past several years, there have been weeks and months where crisis mode has been the norm around here. I do not exaggerate when I say that I have had weeks that have included anywhere from seven-twelve medical appointments in one week. How do we live like that? How do we get through each of those dramatic and tedious weeks to the other side? One step and one day at a time.

So as my day continued yesterday and through this morning, I reflected on all of this. Sjögren’s is so unpredictable. I could write this today and be in the hospital by the weekend with some unsuspecting complication. But, I have gotten better about not worrying when the next medical crisis will hit and rather, I have tried to fully live the day I have in front of me.

Taking one day at a time has served me well this year. To say that 2013 was a big year for me would be an understatement. I got married (with a two day wedding!), traveled to Disney for our honeymoon, conquered my fear of heights with parasailing, ran a very successful Kickstarter campaign, and published my first book. I reevaluated a lot of my relationships. I made new friends and lost some friends as well. I have learned a lot about myself and about other people. I have rejoiced. I have mourned.

That’s a lot. And I did some of this in between medical crises, and sometimes even during them. I think that is why I no longer make New Year’s resolutions: my life is a constant resolution. To be healthier, stronger, more relaxed, more patient, and more tolerant. I consistently work on finding ways to be a better and stronger person. Sometimes it means learning how to say no. Sometimes it means saying yes. This year in particular, it has meant setting boundaries with other people and learning that no matter who it is (i.e. not just my partner), we all deserve to be treated with respect, kindness, and love. Becoming a stronger person this year has meant that I have learned to respect where someone else is at, to forgive, and to truly move on. Most importantly, I have continued to just be myself and not worry about what people think of that.

So while I am I am excited to see what the journey of 2014 is going to look like, I will miss 2013. I am grateful for all the beautiful moments and the growth that I have experienced. However I must say that part of me is looking forward to not having so many big events and instead, just savoring the little pleasures and joys of each day.

One day at a time.

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Do you make New Year’s resolutions and have you made any for 2014?

What Does It Mean To Love Someone?

December 9, 2013 / / 0 Comments

I have had the topic of love on the brain lately. And by love I don’t mean just the romantic kind, but rather, the love that exists between two human beings, no matter what the relationship is. I was married six months ago, I went to a family wedding recently, I have ended several relationships in the past year for one reason or another, and I have this crazy dog that is getting older whom I love more than just about anything else in this world. My capacity to love is great and my ability to receive love is even greater.

We are so reckless with the term “love” sometimes. The words come tumbling out of our mouths, sometimes without a second thought. Maybe I am a bit of a skeptic on this topic, but to me, there is no such thing as love at first sight. I can hear the readers gasp as they read this, as I have made no secret about my overwhelming and whirlwind courtship with my husband. My attraction to him was immediate, but I did not “fall in love with him” at first sight. That was more of a chemical pheromone reaction.  I fell in love with him when he talked to me on our first date about the impact that his sister’s Multiple Sclerosis has had on him. I fell in love with him when he talked about his two children and what it was like to raise them. I fell in love with him when, seeing how exhausted I was one evening, he went to find the leash and took my dog out for me before he left my apartment for the night.

I have had people tell me they love me at times and it has made me scratch my head: a new friend who tells me she loves me as she is verbalizing, in detail, all the ways in which I have failed as a friend. There is a fine line between open communication and honesty, and someone who is holding your hand to the fire while they are saying things supposedly for your own good. I have received e-mails that start with “I love you but….” while they continue to describe the ways that I have been wrong. I have also done the same; believing that by reminding a person that I love them, it will somehow lessen the blow of my honesty. I have had people tell me they love me while looking me directly in the eye and tell me lie after lie. These events are not exclusive to me; they happen to us all and as human beings, we are capable of doing them to other people.

While thinking about what it means to love, it has raised the question for me if we always understand what love is about. We, as a society, are so frivolous with the word, love, itself. We love this person and that person, oftentimes before we even develop a true relationship with them. We say we love someone based on their gregarious personality, or their compassion for other people, or maybe even because we are obligated to, because they are related to us.

But what is love really about? I don’t pretend to have all the answers, but I know what it is not:

It does not envy.

It does not boast.

It is not self-seeking.

It is not proud.

It does not dishonor others.

Thank you Corinthians 13…

I know love is much more complicated than that. But we all have to start somewhere. Corinthians 13 also says that “love never fails.” But is this true? We hear it said at so many weddings nowadays, but yet half of all marriages end in divorce. Does that mean that we never really loved in the first place or is it possible for love to fail? Or maybe it is more accurate to say that we, as people, failed?

I heard it said recently that love is a verb and not a noun. I understand the point the speaker was trying to make: that love is an action. But, I disagree that it is not a noun. Yes, love is an action or a verb. We love someone. We show love to someone. We do acts of love. But to me, it is also a noun. Love is this THING that is so much greater than ourselves. It is a spiritual force that drives us to do things that we may not normally do, or even want to do. Love compels us to accept those in our lives, despite their faults. Love compels us to forgive. Love is the presence in our homes, churches, schools and such that make our souls sing…

It is patient.

It is kind.

It always protects,
always trusts,
always perseveres,
and always hopes.

That is love.

My Sjögren’s Update (And It’s Not About The Book!)

December 7, 2013 / / 1 Comment

I think it has been a little while since I have posted an update about how I have been doing medically. There are many reasons for that; I was away on my honeymoon, I have been tied up with the book being published, and most importantly, I have been feeling better.

I started back on Plaquenil sometime in August as it was clear that the alternative medicine treatments alone were not doing the trick. They help, a lot, but they were not enough to keep me from having more complications, such as with my bladder. I wasn’t doing terribly, but there was a lot of room for improvement, hence why I went back on Plaquenil. I never thought Plaquenil did much for me in all the years I was taking it, which is why I stopped it in February, but I may have been mistaken on that.

By the middle of September, I was still having a lot of issues with increased joint pain, especially in my shoulders, hips, and hands, swollen lymph nodes that were causing some alarm, fatigue, and this new interstitial cystitis issue with my bladder was still not under control. I had gotten a lot of relief with the bladder issues after going in for surgery to have a hydrodistension done, but my symptoms were starting to return, although not nearly as severe as in previous months. My urologist and I came up with a plan to start bladder instillations every two weeks for twelve treatments…at a hospital two hours away from me. Oh, the joy!

Since I was leaving on my honeymoon for Disney (we were married in May) at the end of September, I decided to heed my rheumatologist’s advice and go back on prednisone, hopefully for the short-term. About eleven days before we left, I started on 20mg once a day of prednisone. Within 72 hours, the change was dramatic. My joint pain was resolved, I had more energy, ALL of my bladder symptoms were completely gone, and within another week, my lymph nodes were back down to an almost normal size. We even decided to hold off on the bladder instillations.

Now, I have a long and intense history with prednisone use which you can read about if you go back to the main page of this blog and click on the prednisone tag under “labels”. It has been quite a while since I needed to be on prednisone for longer than a week and notoriously, I have a lot of side effects which make me want to get off of it as soon as possible. This run with it, initially, was much easier and it makes me wonder if my alternative medicine therapies had anything to do with that. I was getting so much accomplished; I even took up running! I did have to stop my alternative therapy, low-dose naltrexone, because I thought I had too much energy and because both medications give me insomnia, I wasn’t sleeping well. Coming off the low-dose naltrexone helped tremendously.

I was doing so well that it made me wonder if maybe the risk of staying on a higher dose of prednisone long-term was worth it. That whole quality of life over quantity thing and all. I began to realize that if I could stay on this dose, I could probably start thinking about going back to work part-time, or at least on a per-diem basis. After a few weeks, I weaned the dose to 15 mg and was still doing well, and then went to 12.5 mg and then 10mg. Within a week of being on 10 mg, I really began to struggle with my symptoms again so I went back to 15 mg, knowing that I had a rheumatologist appointment coming up soon.

Two weeks before my rheumatology appointment, things began to get tougher for me. I was still feeling good on the 15 mg, but I had put on a lot of weight, despite exercising 4-5x/week. Fifteen pounds to be exact…in less than two months. That, I could deal with. More concerning were the mood swings I was beginning to have. I was struggling (and still am) more than people knew with depressive mood swings, anxiety, and becoming easily frustrated. I tried to keep my head down, but it was wearing on me. The good thing about having been on prednisone so often is that I knew it was medication related, and I have a lot of experience at managing these symptoms. But, it was kind of putting a big damper on that whole “better quality of life” thing. I have had bad prior experiences with psychiatric medications and for me, they are not the answer, so I worked on increasing my exercise, exposure to sunlight, stress management, etc.

I did talk to my rheumatologist last week at my appointment about the side effects. My blood pressure was also elevated and the only time that happens is when I am on larger doses of prednisone. She told me it was time to come down on the prednisone. I will be honest, I was very upset. I explained to her that I tried that already and after much conversation, she made me realize that I came down on the dose too quickly. I have a bad habit of trying to do things my way and you know what? I am sick of it. Historically, I get no benefit from being on less than 15 mg of prednisone but this time, I am doing it her way. Not 50% her way, or 80% her way, but 100% her way. So we are weaning the prednisone down by 1 mg every two weeks until I get to 10 mg and then we wean it 1 mg every MONTH. The goal is to get on as low a dose as possible…or even off of it.

I don’t have any other treatment options at the moment besides my Plaquenil and alternative treatments. We had discussed the possibility of enrolling in a clinical trial for a new medication, but I was disqualified from entering into the study because of my lymphoma and radiation treatment history from seventeen years ago.

I am scared and I am discouraged. I don’t want to go back to feeling the way I did over this past summer, or even last year. The only analogy I can think of is that it is like being blind…getting your vision back for a few months…and then being told you will likely be blind again in a couple of weeks or months. Yes, I know being blind is extremely difficult, but it is the only analogy I can think of to explain the terrible feeling that comes with it. Don’t get me wrong, I am SO grateful for these past two months. I have accomplished much and literally have made the most out of every single day I have felt better. I have had a few wonderful adventures and done things I never thought possible. But at this point, I have to trust the opinion of my doctor and that being on prednisone at the dose I was on, on a long-term basis, is not in my best interest. I have to have hope that maybe I will not backslide too much.

But what is in my best interest? Struggling to get through every day? Going on and off prednisone every couple of months to quiet things down temporarily? Wondering if the back and forth on the prednisone is better or worse for me in the long run as compared to just staying on it? There are no clear answers and unfortunately, my doctor and I do not have a crystal ball to predict the future. So I am hanging on tight to my faith as I begin the slow journey of cutting back my prednisone. I will have to tighten up on my diet, self-care, and likely restart my low-dose naltrexone.

The good news is, I will likely lose some weight and my moods will definitely even out. I am sure my husband will appreciate the latter.

Faith.
Hope.
Courage.

And here we go….

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