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.
Finally the end of the school year is near. The last six weeks have been quite interesting. From depression to elation, I have survived it all.
I wanted to focus on a positive that is happening. After having my labs be in the green range for almost everything for over a year and a half, it has been agreed that I should start weaning off of the daily prednisone that I take. This is to help prevent osteoporosis. So….the rheumatologist and I came up with a plan. Slowly convert down to the next level, re-evaluate once I am there, and then maybe start to go all the way off or go down one more level.
Well, about four weeks into the first part of the plan, I ran into a new problem. I got to the point that I was taking 4 days of prednisone at a lower amount and 3 days at the original amount. I started spotting about every other day. I contacted the rheumatologist and my gynecologist. Rheumatologist said to stop reducing medication any further. Just keep it stable. Then suggested I see the gynecologist. I already had.
Now, speculation…… I am not a doctor. I believe the spotting is due to the fact that I am reducing my steroid level down and my body reacted. It has been 18 months since my last period and my endometrial lining could just be thinning because of this medication change.
Gynecologist did an exam and ultrasound. My lining is thick for being in menopause. Then a biopsy was needed. I hope I don’t have to go through that again. The procedure was not bad. It seems to be the medication that made me more ill. Now I am just waiting on the biopsy results.
(This is twice now that medication for a procedure has made me more sick than the procedure itself. I will have to question my specialists about this.)
In the mean time, I am keeping my prednisone the same. Four days a week I am at the lower dose and three the higher dose. I had to put up a chart on my kitchen cupboard to keep track of which day I am to take what. Some days it gets very confusing.
Somehow I know God has a plan for this. I am still here.
Medical disclaimer: I am not a doctor. I am an autoimmune sufferer.
I recently had another barrage of labs. This included my regular and my annual for the endocrinologist. I keep track of them on a spreadsheet. I also happen to use the graph results from the lab company that posts my results. I have known that a couple of my labs seem to roller coaster. Upon further examination, I noticed another trend. They seem to be consistent with my flares. Even though the flares are not as bad as when I was first diagnosed, it is evident.
I will have a high inflammation one lab, the next be in normal, then again a high number. So, labs are about 6 weeks apart. That means at least once a quarter I am in a flare.
Now, more news on that front. How to tell the flares apart….
I am starting to notice the subtle differences between the flare symptoms.
If I am achy, feel tingling feet/hands and experience restless legs; that is my fibromyalgia.
Achy joints that are relieved by heat. Hello Mr. Arthritis.
Excessive dry skin, fatigue and coughing is the Sjogren’s.
Funky rashes and fatigue are Mrs. Lupus.
I have been lucky not to have an war of multiple at once like 6 years ago. I was just a hot mess then.
Most of my extreme symptoms are being managed by my medication, vitamin and complimentary therapies.
Thank you God for the medication, plants, masseuses, and music.
Every day I open my eyes, I am grateful to see another day. I tell myself that I am to make a difference in the world today. God is not done with me yet.
My morning Mantra:
I am breathing. My medication is working. Today is going to be a great day.
May you find your labs revealing as to how your body works.
Thank you to Pinterest for this beautiful inspirational picture.
Holidays are here and I am already tired. How about you?
I have been thinking about what I should say. To be honest, all I can think about is how COVID 19 has made decorating the office very simple. Basic $ store items that can be disposed of in the event of a deep cleaning.
Personally, at home? Well, a friend made me a door decoration of a candy cane. I couldn’t be more proud. I even put it up before Thanksgiving. I have talked about bringing out the Christmas decorations and the tree. But, as I even talk about it, I get tired.
My wallet is empty. Thankfully I started working on handmade Christmas presents last February. Using leftover quilting scraps and yarns from projects, my sister and I were able to make enough for everyone. So, the financial stress has been minimized.
REMEMBER SELF CARE has been on my mind a lot. I almost cancelled my manicure, pedicure and massages this month. Then I thought about the last time I let the self care wane. It cost me twice as much to get myself back into workable/functioning condition.
Let me share with you a few a tips that I plan to employ this holiday season.
Keep all self care appointments. If too expensive, cut back the length of time. For example, change the combo massage to just a reflexology. Change the mani/pedi to just a pedi.
Move doctor appointments around so that you have only one or two for the month of December. Keep Dr. fatigue to minimum.
“NO” is an answer. Covid 19 will keep many things to virtual gatherings. They are still tiring.
Quiet time needs to be incorporated to each day, even if only 5 minutes with the lights off and silence. That means no TV, music or lights. Just be and breathe.
Cook in bulk, then freeze.
Spend more time with your fur baby. Hold them closer to your heart and just breathe. They feel the stress also.
Don’t stress the presents. Re-gift if necessary from last year. Be creative. Give coupons of 10 minutes of unlimited “whining listening”.
Minimize your errands to only one a day in addition to work.
It is okay to stop and rest.
Stay in touch with God. Read your Bible early in the morning to set your day up right. Take time to pray. Take time to listen.
Most of all, remember the reason for the season. Jesus.
I will be the first one to admit that maybe staying home to avoid Covid was good for me. My doctors have stated that my labs have been the best ever.
Endocrinologist even stated that when he met me 6 years ago my adrenal glands and hypothalamus had shut down. They are now both functioning after 5 years.
Let me be honest. This has been 5 years of trying different vitamins, adjusting food intakes, dietary accommodations and re-arranging my life down to every day, hour and minute. If something made me feel bad, try doing less, not doing it or finding an alternative. This applied to food, exercise, errands, sleep, pillows, equipment, ADA accommodations and clothing.
If you have been recently diagnosed with an auto immune condition, please do the following….
Educate yourself. Find out how it affects you physically and mentally.
Try different therapies. I added complimentary therapies, changed diet, yoga and massage in addition to my medications.
Do communicate with the Doctor(s) about ANY side effects of the medications that may be prescribed.
Stay in communication regularly with the Doctor(s) about any new symptoms.
Keep a journal for at least the first year. Log how you feel each day, what you eat and exercise. It helps you find a correlation between symptoms and reactions to daily activities.
File for ADA accommodations at your work. JAN network is a great resource. Your company may have a disability office to do this with.
Realize that your life will never be “normal”. It will always be different each and every day. Thank God every morning you open your eyes whether you are suffering or not.
Remember that it is okay to ask for help. It is also okay to stretch yourself to stay active.
Most of all, start your day of with God. Read the Bible, pray and meditate. Know that when He limits you, there is a better purpose ahead.
I know that this journey is not even close to being done.
