I got a cold at the end of September that moved into my chest. I haven’t been able to breath the same since. So, after suffering for two weeks, I called the doctor after doing some research.
The big question is…
Is is a Lupus Flare? Nothing showed in my labs that would indicate it.
It is Asthma? Labs did state my eosinophils were high, so maybe.
Either way, steriods is the main course of treatment for both. I did a week of steriods and started to feel better. I am about two weeks after the steriods and I am feeling worse again with breathing. My next pulmonologist appointment is the first week of January. There are no available appointments before then. I am told to go to ER if I am “doing that bad”. “Doing that bad” is subjective.
Now the question becomes, is it the start of my decline? Is it psycosomatic due to work? Is it stress from work? Should I take a day off from work? Would it even help?
I don’t have any answers. I pray to God every second I can to have the power to breathe. I give myself permission to breathe. I know He is the only one who can help me now.
Well, I like to have song of the year or a theme that I can use during the year. So, with the help of a friend, we came up with two songs for me to use and a theme.
Songs: Let it Go from Frozen
Shake it Off from Taylor Swift
Theme: Charge it to the Game
One would think after two years of Covid that people would be able to return to some type of normal. I want to tell you now that there is no normal anymore. I don’t care what the politicians say. Covid, inflation, the Great Resignation or whatever, things have not and will not ever return to where they were before Covid. Too much has happened.
So, why the theme and songs. The Great Resignation has cause a severe employment deficit where I work in addition to those that are of retirement age. Now, this was warned several years ago because baby boomers are now of retiring age. They held the majority of the jobs. Because of this deficit, all the non-instructional staff are being asked to assist with duties that they normally would not be involved with.
I was at first hesitant. But, then you think about the person you are refusing to assist. Is it really about the job? or helping them? I decided it was about helping that other co-worker than standing my ground. Does that mean I am whimp? Maybe I am in some people’s eyes.
It has been amazing at just how mean other people can be. I have never been yelled at so much in my life as this last year. The worst part, is that I am unable to provide answers to these people’s issues. Here comes the theme part:
So, I “Charge it to the Game”. Meaning that life is game and I have to learn to deal with it. At some point, there has to be a swing to the other way with regards to people being mean and the employment situation.
When I am feeling agitated, I try to remind myself to Let it Go or Shake it Off. It depends on the musical mood I am in. This is the only way I (and others) are going to be able to get through this year.
May the New Year coming up bring New Joys to all of us who are struggling.
I had a very productive summer. I was able to finish my morning coffee while it was hot, have time to read my Bible, crochet for bit, play with Daisy and then do several research projects for a friend of mine. I called this morning routine my positive energy time. It really helped me stay positive since the Saharan dust kept me inside most of the summer.
Now that I have returned to work, finding this positive energy time is hard. Very hard. So, I have decided to focus on a simple knitting project than the crochet blanket. I still read my Bible in the morning. I have adjusted my quiet time to when I get home (sometimes this works, sometimes it doesn’t).
I have positive affirmation cards at work that I pick one from each morning. Then I make the next four people who come in do the same thing. Everyone gets a kick out of it and are always amazed that the affirmation is meant just for them. The cards then go back in the deck for another day. I also play happiness vibes or focus music (spa music) from YouTube. Many of these are 3 to 11 hours long. Here is one of my favorites https://www.youtube.com/watch?v=a268H4ax44U&list=PL8ONXJWAdtO3Y7X2x8JvPLKNTDG8tAE0S&index=1&t=2517s
As for the cup of coffee, it is still drank hot at home, just not leisurely. Daisy finds a way to fit in play time with me after dinner.
Staying positive has become harder. Work has been stressful and negative. More negative than usual. But, I remind myself that this is temporary.
One thing that I do on the way to work now is focus on seeing a tree. It is a really tall tree next to railroad tracks that I pass every day. I am always at the stop light across from it. I look and thank God for it. It has stood the all the winds and storms, yet stands tall and sways gently in the wind. I ask God what I need to learn from this tree. I immediately remind myself to stay positive and consistent like the tree. I thank God for it again.
The idea is that to be flexible. Adjust your positive energy time fit into the day. I have had to break my 2 hour positive morning energy time to various breaks during the day and evening.
Some days, it just doesn’t happen. I can definitely tell. My mindset is not where it should be. Even just knitting for 5 minutes helps reset my brain back to where I am feeling more positive.
God is the ultimate positive energizer. Take the time to connect with Him. He is always available. His Word is available for free online, Kindle and various podcasts, and other websites. Psalms is always calming. Better yet, look at God’s creations around you. Really take a minute and look at a flower, tree or lizard more closely. What is God trying to tell you through that observation. You might just find a smile on your face.
You have all heard the saying, “You never know what you have until you lose it.” I previously wrote about getting off of prednisone and on to an anti-anxiety medication. The anti-anxiety medication has been a big help with the pain. I did not really know how much pain I was in until I stopped having it. Well, there has been a development since then.
Every year I do what is called a PFT. Pulmonary Function Test. This includes breathing in various ways (panting, holding breath, exhaling fast, etc.) into a machine, then walking for various times while wearing an oxygen monitor to see where you desaturate. I make sure to have this done during the summer and after a good night’s rest. Even with all my care, the test showed a decline this year bigger than the previous years.
So…what does that all mean? Going off the prednisone was a no brainer for my bone health. I am fragile enough without worrying about breaking a hip. The consequence of that (I believe) is that my lung function decreased. The doctor always tells me that the decrease is within the “margin of error”. But, doing the math, if 2 years ago I went down 1%, then last year another 1% and this year 3%, that is a 5% decrease. That is outside the margin of error. Additionally, my coughing fits have not gotten more frequent, but more violent.
Could these changes be due to removing the prednisone? The doctor said no, I don’t really believe him. It was just too coincidental. In the meantime, during the next 6 months, I am to use an inhaled steroid to try to regain some function back. I am only a couple of days into this new medication. Let’s see what happens.
This could be the natural progression of my condition. I would like to think that it can be slowed or stopped. Reality check!!!
Ultimately, it is up to God as to what happens with my lungs. I am not giving up. I know He has something more for me to do.
In the mean time, I have made it my personal goal to have positive energy time in the morning. I read my Bible, crochet and play with the dog for an hour after breakfast before I do anything else for the day. So far, it is helping.
I am happy to announce that I have been off prednisone for a month now. It was a long journey to get off it. Unfortunately, due to the start of bone loss and a predisposition to getting osteoporosis, the doctors agreed that it had to be done.
Some of you may think this was not a big deal. It was. I never understood withdrawal symptoms until trying to wean off the prednisone. Most people can do it in a couple of months. It took me over a year. My system is just so sensitive to any medication changes.
Also, did you know that some anti-anxiety meds help with pain? I had heard that. After considerable painful flares of fibromyalgia this last year, the rheumatologist and I decided to give a particular one a try. I will tell you that I waited until I was completely off prednisone until starting the new medication. I did not want to get confused over what was withdrawal symptoms versus side effects from the new medication.
The good news is that after three weeks of being on the new medication (anti-anxiety), I have barely had to use my heating pad in the evenings. I feel much better overall. I did not realize how much pain I was in until it went away. No wonder I had problems with brain fog and focusing. My body was on pain overload, and I was oblivious to it. I did experience a few side effects the first week. I had to figure when the best time to take the medication and with or without food.
I would like you to understand that I am not a doctor or medical professional. I am sharing these experiences with you so that you may understand yourself and know you are not alone.
I have not used the exact name of the drug or described the side effects because everyone is different.
May God guide you to a physician who will help you find a better normal.
A lot of my friends have been diagnosed with IBS. They don’t always share whether it is the one with diarrhea or constipation. But, they know that I understand what they are going through and have come to me for advice on how to eat.
The first thing that runs through my mind is….if you have IBS, the probability that you have another immunity issue is pretty high. (At least I think so.)
I am not a doctor or dietician. I can only share what has helped me and maybe it will help others.
Honestly, I never even considered that my digestive issues were IBS until the gastroenterologist told me to switch to a Low FODMAP diet. When I did the research, (Key word- RESEARCH) I then discovered that this recommendation is for those with IBS. I knew I had GERD and Esophageal Dysphasia. Never even occurred to think that the morning gas, pain and trots were IBS. When I started cross referencing my medications with my symptoms and other websites (Sjogrens, Lupus and EverydayHealth) it became clear that I suffer from this. It is not uncommon to have several other auto immune issues when you have one. One chart that I found in researching Sjogren’s shows that you will have on the average of five other health conditions. Those in the top ranking to go along with Sjogren’s are GERD, Raynaud’s, sinusitis, Hypertension and IBS. I got a different combo platter than those specifically. I did get the GERD and IBS. Thankfully, I have not experienced the others.
I usually refer them to Whole 30 and Everydayhealth websites. Both are great. I love Everydayhealth because it sends you relevant emails according to what you subscribe for. I get the RA updates. Everydayhealth recently had an article on eating vegan and its benefits for RA. Whole 30 has great resource shopping lists that you can use to help hone your dietary needs.
I started my food restrictions by removing all gluten, wheat, rye, barley and then all grains. I then moved to trying plant based. That did not work out since I am sensitive to soy. One of my biggest helps was the research Lupus and Sjogrens foundations have done and published.
I was gifted “Healing Arthritis” by Susan Blum, M.D., M.P.H. Great book. It helped me refine my food selection and vitamin supplements even more. That led me more to a Paleo type of diet bordering on Keto.
It has been in the last year that the gastroenterologist suggested a Low FODMAP diet. I once again turned to Whole 30 to get a good list of suggested foods. What is FODMAP? Well, I had to look it up. Bottom line, don’t eat anything that can cause gas or ferment in your stomach.
What happened then? Well, I crossed off all my food allergies, then all the night shades and then the red lined (avoidance foods) from that list. There wasn’t much left. I progressed down to 2 main meals and snack. Eating a high protein breakfast, high protein lunch and a snack for dinner. Dr. said to eat light and have all food finished 3 hours before bedtime, so small dinner or snack for my evening meal worked great.
Then IT happened…..What would that be? I started noticing my clothes were getting larger. I panicked and contacted my endocrinologist and the gastroenterologist. One was concerned, the other not. I was told that between my medications being managed effectively and changing my food selection, my body was finding a new balance. (WOO HOO!)
I will be honest. I didn’t do the changes to lose weight. I did them to get rid of the pain. (The shoulder pain, hip pain, all over body pain, stomach pain, colon pain, back pain and any other pain.) Going down another dress size is wonderful.
Please, please, please work with your doctor on your food selections for your conditions. You will need to make sure that with vitamin supplements you will have a balance. Blood work needs to be monitored carefully to make sure that there are no deficits. (I suffer from several deficits that require mandatory vitamin supplementation.)
Here is a fun treat….Chef Fran cooking my version of a safe dinner. Enjoy.
Every new year, most people decide they are going to eat better, lose weight, cut out sugar, salt, etc.
Have I got a treat for you. My close friend Chef Fran has launched a YouTube channel that has lots of wonderful salad ideas, flavored waters and food of the month videos that address eating healthy. She includes ingredient lists and vitamin information in the information section under the videos. Getting vitamins from food sources is the best. Please take the time to check out her channel, like, subscribe, comment and share. You will love the colors and flavors she uses. I have broken down the videos for you so that you can choose where to start. They are all incredible and delicious.
I am not a doctor. I am only sharing with you what I have found to work for me.
One of the things I find interesting is that many people are on a gluten-free diet to keep the weight off. I will admit that is one of the benefits. Taking out all processed grains that contain gluten do limit your diet selections. You can kiss those donuts, cookies, cakes, bagels, breads, crackers, and pastas good bye. Now, I do know that there are some replacements. Honestly, they aren’t that good (unless you like sandy hay).
Then comes the question, has this really helped me with all my conditions. Honestly, I believe so. If I do have something with gluten, I pay for it a day later or earlier. I could have digestive issues. Usually it manifests itself as tingling lips (the immediate reaction) or a rash (delayed- sometimes up to a day).
So, in the interest of finding out if there was any research about it, I ran across an article in Everyday Health by Carol Eustice. Here is the link.
I have had such success with my conditions with avoiding gluten, I was a bit surprised about the lack of evidence. Take a minute and read the article I have put above.
Personally, it has been one of the best things I have done. Now, understand that I do not have Celiac disease, but I am allergic to wheat and I have tested positive to being gluten intolerant.
The article mentions about needing additional supplements when you go gluten-free. Since I have always had such a limited diet, I didn’t really need to add anything new to my supplement list.
Changing to gluten- free was just the beginning of my diet changes. God has led me to using paleo diet guidelines and now He added Low-FODMAP. My diet has become extremely restricted. But, I feel better.
All I can say, when dealing with illness diagnoses of Lupus, Sjogren’s, RA, OA, GERD, and so on, please do your own research. Try different diets that help with inflammation reduction. Adjust your eating to keep you functioning. Invest in good vitamin supplements to help with any deficits. Again, do your research to make sure that the vitamins do not interfere with your medications.
I am happy to say that since the blog about the Fibromyalgia, my labs have returned back to normal and the pain has almost abated.
I did have to re-arrange my life again. Most of all, I have to rest on weekends. I was able to avoid starting the Cymbalta. I had to take out all grains again from my diet, add just a bit more red meat, and add honey back to my morning tea. The biggest thing I had to return to is taking apple cider vinegar daily. That was one of the things that I stopped back in September before the flare in October. Adding it back to my daily routine did help me back on the road to recovery. I do not drink it, I prefer the gummy by Goli. I tried other apple cider vinegar gummies and I always go back to Goli. Buyer beware. They might be cheaper, but the quality is not there and sometimes they add other harmful herbs that may not work for you (mine had cayenne – nightshade no-no).
The next thing I decided was to spend a half hour or an hour knitting when I get home from work. My dog has enjoyed the knitting also.
Dog claimed knitting
This is to help my mind shift gears, relieve the anxiety from the day and gives me time to enjoy the quiet. It also gives me time to talk to God.
For the holiday season, I avoided shopping. If I didn’t make a gift, I went through all my previous years’ gift and re-gifted. I also started buying presents during the summer as I saw items that would be perfect for my family and friends. It prevented me from stressing out about going into stores or about the money.
One of the biggest things during the holidays is the food. Good food, high calorie food, etc. I have to admit, as much as I wanted to eat the cookies that people kept bringing me, there really wasn’t any temptation. I had already started feeling better, so cheating on staying anti-inflammatory and low-fodmap restrictions was a real no brainer. I ate for me. Not what others wanted to see me eat.
I do get time off during the holidays due to the nature of my job. I really fought myself not to allow each day to get busy. I have only allowed 1 errand, dr. appointment or house cleaning item to be done. I will admit it stressed me out a little to just vacuum and then not mop until the next day.
The bottom line, by taking Christmas calm, my labs that were whacked in October have now returned to normal again. I won’t lie, I was scared for while. I am still progressing off the steriods. Everytime my pain gets worse for while, I still consider starting the new medication. I am going to be patient with myself.
It is that time of year when we turn to look at our loved ones and wonder…what should I get them for Christmas? If they suffer from auto-immune disorders, I strongly suggest you get them something useful and thoughtful. Here are a few of my favorites that I have bought for myself or they were bought for me.
Hip Pain- ABCO sport knee support pillow. It has a gel core that keeps your legs cool while separating your knees while laying on your side. It helps keep the knees apart and aligns the hips. Aligned hips mean less pain.
Body aches – Mighty Bliss Heating pad. It comes in a couple of sizes. It has a wonderful soft covering and is long enough to go down your whole back. The heating is timed, so if you over enjoy, you don’t have to worry about being cooked.
Gift Baskets – Really take the time to observe what is used most often. Better, yet, ask them what items you could buy them at the drug store to help. Nothing says you care than a gift basket of your favorite over the counter pain killers, arthritis creams, vitamins, candy, snacks, bath bombs and holiday cheer.
Tea or Coffee? – Honestly, I will take both. If your favorite person loves something in particular, get that. Warm drinks are encouraged to facilitate with swallowing. Honey is great in either coffee or tea and assists with swallowing problems.
Shoes – This is something a little more difficult to do, but is doable. I just recently discovered Vionic orthopedic shoes. Fashionable. A bit on the expensive side. I bought one set for myself. I loved them immediately. The right shoe helps a lot with pain that can be in the legs, knees and even the back. A friend noticed them and offered to buy me a second pair for Christmas. Done deal. Observe their favorite shoes, do the research and take the initiative. If they are too expensive, give cash and tell them it is a down payment for a new pair.
Arthritic hands – Gloves are always welcome with colder weather. Paraffin wax dip machines are a great gift also. The heated wax does wonders for stiff achy hands. Make sure to include enough wax to fill it. The wax does come scented, if they like that.
Entertainment – Adult Coloring books and a set of markers are always fun. Maybe your friend knits or does some other craft. Supplies for the crafts are always welcome. Jigsaw puzzles can be a nice distraction and helps keep the brain sharp.
Fur baby- If your loved one has a pet, a gift for the pet is always appreciated. Take the time to find out if the pet is a picky eater. Getting dog treats that the dog won’t eat is a waste.
I am sure you can think of other things. If you are unsure, ask. If we don’t want anything, respect that. Make a donation in their honor to their favorite charity of whatever foundation may be doing research about their auto immune issue.
Either way, God will guide you if you ask him.
Happy Thanksgiving, Merry Christmas and Happy New Year.
