Chronically Content is my journey that takes me through pain and suffering. My goal is to live in contentment. I blog to challenge myself an dto encourage and challenge you to live a life on contentment.
Fifteen days and counting down….. We’re moving. The moving truck will be here for us to load in 15 days! So many boxes have been packed over the last two months. Sometimes I’ll pack one box a day and sometimes a few. After each box is packed out comes the ice pack to try and sooth the awful pain.
We’ve moved many times in our marriage, but this is not like any before. The body doesn’t want to move and I’ve decided that packing is for young, healthy folk. Since my arm is still healing, I’m being very careful not to lift any boxes with that arm. I also sit down to pack things as much as I can.
No matter how cautious I am, the pain is still unbearable. I took my last dose of Prednisone this morning, so I’m not sure if the painful joint swelling will recur or if the drug has knocked it out for now. My dread of packing is because there are so many last minute items that will need to be packed.
We’ve decided to just pack things up ahead of time and the last few days at home we’ll need to get take-out. This will make it possible to pack up gradually. I just can’t box up 5-10 boxes on the last day. When your body is in terrible condition, like mine, normal things are impossible.
The 18 appointments that I have this month are for physical therapy, occupational therapy, gynecologist, neurologists, cardiologists, and dentists. Just making it to each appointment has been exhausting. At times I have put ice packs all over myself. They really help my head, where I’ve been getting rebound headaches every night.
I really want to see this move as a fun adventure, so I’m keeping it light and positive. Stress can get tough on everyone during a move. Making a drastic change in lifestyle and climate can be nerve-wracking and lead to flares. Chronic illness changes life completely and brings many complications when you move.
Praying for God’s help and strength is my number one priority. He’s never let me down. It’s not to say that it isn’t tough, though. Hard times mean it’s time to focus on survival. This will pass and I look forward to that day.
June’s Chronic Illness Link-Up is at the half-way point of 2019. It’s hard to believe that this year has gone by so fast. This year has truly been a whirl-wind of changes and will continue to be. I am happy to be included again in this party with A Chronic Voice.
The 5 prompts this month will have me again thinking how I can describe a life of chronic illness through these words. I hope they also get you thinking about your life.
I do often feel like I’m repeating myself in this life of chronic illness. The cycle continues over and over. Sometimes the cycle is drawn out over weeks or months and lately it seems to be a quick cycle. I’m referring to the cycle of one diagnosis leading to another.
We talk about flares in our illness as being a severe period of time when the illness and pain become unbearable and we usually crash until it’s over. This year my flares are hard to distinguish from my everyday life. I believe that’s because I’ve been cycling from one new diagnosis to another.
After being diagnosed with Sjogren’s Syndrome last year, doctor’s have also found new diseases that are often co-morbid. I started treatment for the painful Small Fiber Neuropathy and then got Shingles and Sciatica. The Sciatica has not been stopped, even though I did have one small time when it disappeared.
Osteoporosis was diagnosed after a small fall resulted in a large break. I’m still undergoing PT and hoping for healing to show some progress. I also was diagnosed with Left Bundle Branch Block of the heart, Central Sleep Apnea (in addition to Obstructive Sleep Apnea), and many more failing teeth.
With all my weaknesses, I’ve been wondering what will hit next. But, I also have to wonder what will be better next. I’m wondering what life will be like in Kansas. We’re moving there in a few weeks. I’m wondering what doctors will be there and what new perspective could be found.
Wondering is a word that fills my mind with positive thoughts. It makes me look forward and not backwards. Although there is some fear about a total change, I know that most things stay the same.
Some days I feel like I’m turning into an old and broken-down woman. As I walk with a cane and have gotten fat, I feel that I’ve reached a very depressing turn in life. But, I won’t give up! I will continue to fight the weight gain with yet another start to eat healthy and cut out the sugar and processed food.
Some people think that turning over a new leaf is an old cop-out. They think that if you really kept up the good eating and exercise you wouldn’t always have to fail and start over. But, I don’t want to beat myself up. It does no good to get down on yourself. Fighting multiple chronic illnesses is hard enough!
Turning the corner or flipping over a new leaf sounds just fine to me and I’ll do it as often as necessary. With God’s help, I’ll make as many good improvements to my diet and routine as possible.
We all like to Get new things. When we’re little we want to get a new toy, new pony, or new friend. When we’re adults, it’s not much different. When we have chronic illness, it seems like we’re always getting a new pain or disease. It would help if we could just get a new cure.
With each day that I awake, I’m getting life! I’m getting another chance to love and care for myself and others. What a beautiful gift to get!
Desiring is a hopeful word, because when you desire something, it’s desiring something good. Who have you ever seen that is desiring pain or illness or misery?
Desiring good health, a low-pain day, or even world peace means that we want something beneficial for our lives or for the lives of those around us. I’m desiring so many things: help from the physical therapist today, a successful and pain-free dentist appointment tomorrow, and healing of my broken bone. I desire that we can pay all the medical bills and still keep our old cars running.
What are you desiring in your life? If you have chronic illness you’re probably focused on desires that could bring you better health and less pain. Chronic illness brings us so many problems that healthy people don’t have or even consider. While we’re desiring good things for ourselves, make sure to desire something special for those around you.
The last week was spent traveling to visit family. We had a marvelous time with everyone, especially our new grandson. Since he’s six months old, he is fun to play with and cuddle. The long trip had me spending a total of 24 hours riding in the car and my body hated it.
I was already starting to have a lot of pain in my right hand MCP joint. As the week progressed the finger started to throb and then the swelling came. The right hand swelled on the top and became red and warm. By the time we headed home I was unable to use the hand and the pain grew worse. My ankles also swelled bigger than I ever had during a pregnancy.
Now, I’ve called the rheumatologist, even though we had an appointment last month that was meant to be my last before moving out-of-state. I hope I don’t need to make another appointment. I already have 3 appointments every week scheduled for this month.
The struggle is real! My left arm is better, but the left extending ability is still not advancing. After the broken arm, I still need a lot more work to move it towards the left. And, I’m not supposed to lift anything heavier than a water bottle. So, I’m asking hubby and my son to do many favors for me. Thankfully, it’s summer break.
Sometime during my trip my sciatica improved. It’s hard to say which day it happened, because I had greatly increased my medicine. I began taking my muscle relaxer again and increased the dosage of Advil. Using the heavy doses of both helped my sciatica. But, oddly enough, my other joints swelled. Who can explain the inflammation of auto-immune disease? Not me.
I hope to find out why this happened and what the doctor wants to do about it. I do really hope that it’s not the beginning of Rheumatoid Arthritis. Although I’ve read that many Sjogren’s Syndrome patients develop RA, I don’t want to be included.
I’m not in any shape to pack more boxes for our upcoming move. Flares that cause swelling demand that I rest. So, in between all the doctor’s appointments, I’ll be resting. Feet up!
Today marked the end of my 1st round of physical therapy for my broken shoulder. I’ve come a long way, but am no where near full range of motion. My physical therapist has been wonderful. As I was leaving she mentioned that she was contacting the surgeon to get a new order for PT. She didn’t want me to miss any time with so much more that was needed.
I’ll also begin physical therapy for vertigo in two weeks. The therapist is good at re-aligning the crystals that can be messed up. I really don’t understand the process, but I’ve heard that this can work wonders. I have so many waves of dizziness and would love for this to be the answer I need.
It’s even more important for me to get help for my dizziness and balance issues after today’s bad news. I knew that this was coming, but hated hearing the official diagnosis of Osteoporosis. Why do I have to get another medical condition? Who knows why, but I know that it’s something that I can’t ignore. Falling now would most certainly result in another fracture.
Pain, money, time, and misery for my family are the main reasons I don’t want another fracture. But then, who wants a broken bone? Somehow, I need to stay upright. I’ll be using my cane and hope that it will keep me from losing my balance.
My physical therapist said that she wasn’t sure if my bone was healing, and we won’t know until my next x-ray. I did tell her about the shoulder sliding around in the socket again. She was unhappy that the surgery didn’t tighten up the shoulder and so was I. Ehlers Danlos Syndrome had caused my shoulders to become unstable and that will not correct itself.
Just as we opened my bill ($950.) for the new crown, another tooth cracked. A huge chunk of the tooth fell out while I was eating a piece of bread and I guess it was swallowed. We can’t keep paying for all these broken teeth. The fillings don’t hold and the teeth crumble, all thanks to Sjogren’s Syndrome. I’ve read that dentures don’t work for us, because we have dry mouths.
The only other solution for missing teeth is implants, which are terribly expensive. My health problems are much too expensive for retired folk. As I just noticed on Instagram a new post, it reminded me of God’s view on all of these medical bills. “Never forget that God will provide” I really needed to see that beautiful reminder of God’s faithfulness.
May will soon be over, but I wanted to try writing about the prompts from A Chronic Voice. Having many chronic illnesses puts me in a position to think about anything for hours at a time. Thinking too much can be a good thing or a bad thing. Here are my thoughts on these May Prompts.
Regrouping – I think of people regrouping after a massive failure. How many times have I regrouped in life? I could never count this, but I can remember going through a regrouping process as a child. It’s a little bit like closure. It’s like a new season; you know, how a new season makes you feel new?
Whenever I’ve had a failure or crisis, I would take an assessment of the facts, or at least the facts as I saw them. Then, I was eager to regroup. The definition speaks of organizing or reassembling. Starting over always included an organizing of my situation and sorting it all out so that I could start over. This process brings me excitement and renewal of mental energy.
Investigating – I would like to say again that I’m no longer investigating my numerous illnesses. Each time I was diagnosed with something new, an immediate investigation of the disease began. I furiously searched google for anything that seemed to legitimately offer me any understanding of what I was facing.
Not long ago, I decided to stop this process and try to go on with my life, whatever it may be. This seemed easy at the time, because it seemed like the doctors had exhausted their thrust for testing me for all the things that were related to my primary diseases. But, out of the blue, new problems have arrived to bring me pain and worry. My broken shoulder and rehabilitation has been long and hard. This break may well be called a fragility break, because I didn’t have an extreme accident to cause it.
Now, the doctors are worried about my bone strength. Two years ago, my bone density scan showed that I have Osteopenia (early bone loss). Today was the new bone density scan. When I finished, I noticed that the technician had circled spots on my hip bones with a red marker. I’m now dreading the test results. Osteoporosis will probably be in my future, and brings with it a bad bone prognosis.
Boosting – Boosting is really helpful when feeling down from pain and constant sickness. I think about boosting of my spirit when I’m feeling low. I feel a boost when Hubby brings me flowers for no reason. Something beautiful can provide a boost that mentally and physically drives me to keep trying. I think I’ll need some type of boost after I go to the dentist tomorrow for the repair of my cracked crown.
Setting – What type of setting inspires you? We all have a certain environment that gives us inspiration to keep fighting. When you remain isolated at home because of your illness, it can be very hard to live in a setting that brings you peace or joy. Creating beautiful surroundings can definitely improve your mood, ability to be creative, and feel inspired to never quit fighting.
I long for beautiful surroundings with a feminine backdrop. I find flowers, floral fabrics, and cheerful colors very inspiring. When we suffer daily, it’s really important to try and enjoy our surroundings and let them be a part of emotional healing and encouragement. Everyone has a setting that revives them: nature, water, sunshine, or even rain.
Reviving – I believe that the setting discussion ran right into this prompt: reviving. In fact, all of the prompts led me to this word. I love the feeling of being revived. I think, when you hurt all the time, longing for the emotion of reviving is natural.
Sharing the down times can be the key to coming to terms with your pain and then the renewal can come. Journaling, counseling, or even blogging can bring about the sense of reviving the spirit. Everyone who has chronic illness hopes to be revived and rejuvenated in their long journey.
A month after surgery my pain has become less intense. I started physical therapy last week, and am working with a top therapist. The therapy has been easy, because she doesn’t push me past where I should go. Each appointment shows greater range of motion for my shoulder.
Physical therapy makes me tired, because I have to do 3-4 sessions at home each day. The list of exercises grow with each treatment, but I’m glad to see it making improvement. The PT is only working on range of motion, and that will be the case for another month.
The surgeon got new x-rays today and he went over the results with me. He wanted to see more healing and could see it only in one little area. He tested my range of motion and thought it was progressing well. He didn’t want me to try any strengthening exercises for at least another month. He hopes to see healing of the bone break by then.
I remember his remarks before the surgery: that Sjogren’s patients and Ehlers Danlos patients may not have as good recovery as the average patient. He said that range of motion doesn’t completely get back to normal with my health conditions.
Another improvement is that I quit taking the strong pain medicine. I’m now only taking Naproxen and Tylenol for my Sciatica pain. With this flare, I haven’t been able to get much sleep. Adding my Tens unit has really helped with the intense throbbing and burning pain of Sciatica.
Recovering from surgery with Ehlers Danlos Syndrome and Sjogren’s Syndrome isn’t what it could be without the two conditions. The fact that I had surgery and the inflammation that came with my severe bone break, my body has been flaring. My Sciatica came back with a bang and my fatigue became severe. My body wants to sleep most of the time.
Thankfully, I have great support with my family taking over everything. I’m thankful that I don’t have a job that I’m being pressured to return to. This way, I’m able to nap whenever I need it and do nothing in my home. Hubby has done everything for me and it’s been a lifesaver.
It’s amazing how a broken bone can cause so much pain and disruption to my life and the lives of my family. And, with 8 more weeks of prescribed physical therapy, it ties us down to home during the time we had planned to travel. Chronic Illness really does affect the entire family in practical ways and emotional ways. The stress is not what anyone wants to deal with.
I feel more determined to work hard doing my physical therapy exercises and continuing in prayer. I will continue to ask God to heal the bone, especially because I don’t want to end up having to get a full shoulder replacement. That would be such a huge setback in pain and expense. Every day and in every situation, I need God to help me and answer prayer.
Isaiah 41:10 So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.
It’s been too hard to post since my surgery. My pain has been awful and constant. The inflammation from the bone break and surgery have put me in a bad flare with Sjogren’s and EDS.
I lived from one narcotic pain pill to the next dose. My dose pill wasn’t very strong, but it took the edge off. Going through this type of break makes you wish to be sedated for a month, The meds put me in a heavy fog, so I’m basically worthless.
I’m thankful that at least it was my left shoulder and that left my dominant hand free. But, I’m still very slow, typing with one finger. I’m still pretty dependent on hubby for most everything. He and I are both worried about me falling again, since my balance is so bad. I’m working to try and get off of some of my medications that cause dizziness.
These medicines are also the ones that help me with muscle pain and neuropathy pain, So, I haven’t been able to sleep from Sciatica. There is never an easy answer!
Broken bone and repaired bone.
Yesterday I had appointments with my orthopedic surgeon and the rheumatologist. The x rays showed my shoulder with the titanium plates and 7 screws. Hubby calls me the bionic woman. The healing seemed to be on track. Thank the Lord! I also got my Physical Therapy orders.
The rheumatology appointment wasn’t as positive. She was very business-like as she basically told me that there was nothing they could do for my severe fatigue. I feel discouraged, knowing that this fatigue can’t be fixed. I feel like a vampire has drained me of all my blood. There is NO energy and hasn’t been for years.
My job now is to try and push through PT, which starts Monday. Even hough the surgeon said I won’t get total use, the physical therapy will be the only way to reach my new normal. My prayer is that I can endure the pain and not get depressed.
Nehemiah 8:10 Do not grieve, for the joy of the Lord is your strength.
This giveaway/sweepstakes is in no way endorsed, affiliated, or associated with Facebook, Twitter or any other Social Media Networking Site. This Giveaway is valid to continental United States residents only, Entrants must be 18+ years of age to enter.
This giveaway event will end at 11:59 PM (EST) 5/14/19. The winner will have 48 hours to email their information back to las93063 at gmail dot com or a new winner will be drawn, you may want to put this email address as safe as it could go to spam. The giveaway is not valid where prohibited!
By entering you are authorizing us to collect the information on the form below, this information is used only to contact the winner! No purchase necessary, Void where prohibited by law, and the number of eligible entries received determines the odds of winning. Winners are chosen randomly by the Giveaway Tools program.
The sponsors are each responsible for shipping of the above prizes. No blog associated with this contests are responsible for prize fulfillment. If you would like to be a sponsor in a giveaway like this please email Laura Smith at las930 (at)gmail (dot) com.
If you take an entry you must stay following for the entire contest or you will be disqualified.
Also we all “love it if you like us” on Facebook! If you like our blogs on social media it helps us bring you only the best giveaways and more of them! Don’t forget to stop by for your daily bonus entries. Share your referral links for even more chances to WIN!
My surgery was Tuesday, and it was a horrific experience. From the moment I arrived until the time I left the hospital, it was terrible. Have you had surgery before? This was my second surgery, and so much worse than the first one.
Waiting a week to have this surgery made it worse because of the lack of sufficient pain relief. And, the scheduling mixup certainly made me distrust those who were to take care of me.
When I had my hysterectomy a few years ago, it was at a different hospital. This hospital made me feel cared for and safe from the very beginning. The hospital’s appearance and professional staff were very reassuring. It made me very trusting of them. I never lacked pain relief,
Tuesday I showed up in awful pain, because I was to have an empty stomach. I waited in a hot lobby to register. The wait was much too long. Then, I was taken to a tiny room where 3 different nurses were doing tests. The IV nurse had to cram the IV in a vein that was still bruised and swollen from a week ago. 3 hours had been set aside for pre-surgery stuff, but I mostly just waited in pain.
Finally a lady pushed me to the pre-surgery area. Instead of getting pain help, there were tons of questions. The anesthesiologist was the doctor I needed to ask questions about EDS and any adjustments to my care, because of it. She couldn’t pronounce Ehlers Danlos, but said she knew what to do. Then, at the last minute I was given a different doctor!
Next, a person came to give me a nerve block. This was a painful procedure, but at least my pain was going. I was happy to hear that this would stop pain for 24-48 hours, This wasn’t true for me, The pain returned 5 hours following my surgery. EDS can affect how medicine is metabolized,
I still had to wait a long time before being wheeled into the OR and was awake for quite a while before I was put to sleep. The surgeon told my husband that everything went well. I was sent home at 9:30 pm, even though I wanted to spend the night.
As my arm started to wake up from the nerve block, I began taking pain medicine, The next day was the worst pain day, as the pain meds were just not covering my pain. I was very depressed after surgery and the next day. My mood had started to improve yesterday. I knew that depression was a symptom that could come after an operation, but was so surprised to feel so down.
Things are improving a little and I’m thankful, but there is so much anxiety. We already owed thousands to hospitals before this arm fracture. Now, thousands more in charges will come. When we move this summer, I will have to purchase another insurance policy in our new state. This will cause us to start over with our deductible.
Money worries are one of the worst chronic illness problems. When your health issues only create money problems for your family, that is hard to live with. There is guilt and worry.
Thankfully, there appears to be no problem with the incision. The skin around the bandage has good color, My hope and prayer will be for continued healing, and for God to provide,
Disclaimer: I’m not a medical expert. This post is not medical advice, but just my personal experience. If you are concerned about your health, please consult your personal physician.
Sunday morning, we arrived at 5:30 am to have surgery. We followed the directions I had been given over the phone. But, when we arrived the nurses looked at us funny and told us to go register downstairs.
When we got to the registration center, the lady could find nothing about me in the system. So, the poor girl called everyone she could, We finally left about 7 am. I was bewildered. What had been the problem? My husband was frustrated.
We decided to focus on a positive reason for the mishap. God was certainly in control of my circumstances and He must have a reason.
Today, I met with the top surgeon. He knew all about EDS and Sjogren’s. He was very apologetic about how things happened and then the good news came: He was doing my surgery the next day.
Well, my suitcase is still packed and I’ll be ready tomorrow morning. Pre-surgery testing will start 3 hours prior to surgery. They’ll take blood, do an EEG, and who knows what else. At least that will all be the easy part.
Relief is a good feeling! I’m grateful to be able to have my operation with the surgeon I hoped for. All of you have been praying for me, and God has answered.