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Finding Chronic Illness Memories

Finding, Researching, Dating, Reusing, and Recounting are the prompts from A Chronic Voice for the month of September. I’m always finding out new things about my life. As I looked at the list of prompts, I felt that I was clueless as to what to write. But, the challenge was fun!

Date

I always try to be very honest in my thoughts, so that you lovely readers would hopefully get where I am coming from. I want to convey the truth about living with chronic illnesses as well as encourage someone who is in the same boat.

Finding – After I was diagnosed with all of my illnesses, I found that I became another person. The old me was replaced with a new me. The new me was always sick. I was finding that I really didn’t like the new me. She was boring, felt horrible, and looked horrible. Over the years, I’m finding that the new me is not so new. Inside, I’m still finding parts of the old me and she wants to enjoy the beauty in life. So now, I feel like it’s almost like looking in the mirror and realizing I’m alright.

Home Health Care at Great Prices

Researching – I have Sjogren’s Syndrome. Research for Sjogren’s Syndrome is so lacking. This awful systemic disease isn’t even well-understood by doctors. Research has given Sjogren’s sufferers not very much in the way of treatment. A little pill called Plaquenil is all that I’m given to fight this disease. After a year of taking this pill, I feel no better. Doctor’s have told me to keep taking it, in case it might help prevent further problems. Because many patients end up with Lymphoma, it’s very scary. I hope and pray that someone will be researching for more treatments.

Dating – Dating is fun, even though I’m 57 years old. I’ve been married since 1984 and my husband and I try to have dates every now and then. Over the years, it’s been super difficult to keep dating. When we had babies it was tough to leave them with a sitter. Over the years we didn’t always have the money for sitters. As we’ve learned that dates can be cheap, it’s gotten easier to be content with a less formal date. It’s fun just to be together!

Reusing – I think of reusing things in order to live a frugal lifestyle. I’ve never been rich, so whatever can be reused is reused. I reuse: gift bags, mailing bags and boxes, and purchase consignment and thrift store clothes and household objects. Reusing and recycling is being a good steward of all that I’ve been blessed to receive.

Recounting – My first thought about recounting is that we often recount or rehash all the negative things about chronic illnesses. When I meet a new doctor or someone wants to get to know me, there is a time that I must rehash all my problems, diagnosis’s, and treatments that I’ve tried. I can tell you that this is not pleasant.

It’s much more enjoyable to recount all the wonderful memories in my life and even recount the more recent positive events. It’s kind of like counting your blessings! The Bible says that “A Merry Heart is good medicine.” Proverbs 17:22

@2019, copyright Lisa Ehrman

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Burdens Of Chronic Illness

August is almost over and hope for improvement this month is gone. With each new month, I feel a strong urge to believe that something good will happen and some part of my chronic illness list will be improved.

Burdens

But, as usual, there has been no improvement. Even though I know it isn’t true, the first thing I do is blame myself. If only I had done this or that, I think to myself. I know this is stupid to think, but it’s part of my upbringing to be hard on myself. The battle to feel guilty and worthless comes to me much too often.

I hate this battle. Many times I can just dismiss it and win temporarily. But, when I’ve been very sick for weeks on end it’s so hard to be a warrior. That’s when I get weary and think too much. When I give in to the misery there needs to be a time of grieving. I’ve grown accustomed to these periods and let them run their course.

As I suffer, time continues to march ahead. Outside are all the people who get to go about their business and live normal lives. People drive cars, do errands, walk in the park, or go out to eat. Most of them don’t realize what a glorious privilege it is to be healthy.

The last few weeks has been painful. My flare with Mast Cell Activation Syndrome has worn me down in every way. My only accomplishments have occurred siting in my recliner. Archie and I will continue to sit here and look like we’re relaxing. But, inside my head I fight to relax and trust God that He has a good purpose for my life.

When the flare stops and the grieving ends I know my heart will feel lighter. I’m thankful that these times of mourning don’t last long. God is good to lift my burden.

Cast thy burden upon the LORD, and he shall sustain thee: he shall never suffer the righteous to be moved. Ps 55:22

@2019, copyright Lisa Ehrman

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A Health Update And Hope

Disclosure: Pathway App was provided for purpose of review. No compensation was provided and all opinions are 100% my own.

A Health Update:

Fatigue has continued to be a problem that causes me to be nonfunctional. I’m tired when I wake up, all throughout the day, and when I go to sleep. I’ve been tired for so long! I remember the days when I woke up with energy. But, it’s been too far in the past.

Sjogren’s Syndrome has certainly been making my life worse. My eyes are dry all day and by the evening, my vision is so bad! Eye drops feel good for about 15 seconds, and then the dryness takes over. I’ve also dealt with dry mouth and skin. I get very frustrated by all the auto-immune disease symptoms.

Sjogren’s not only deals with dryness. Joint pain, rashes, and fatigue are also some of the other symptoms. Being on a drug that’s an immunosuppressive has made me more vulnerable to getting sick. This week I came down with a horrible cold with sore throat, congestion, coughing, chills, and overall misery. Colds last longer than they did in the past.

Sciatica has been better lately. There hasn’t been any severe pain this past week, but a dull pain continues when I turn onto that side in the bed. I’m just thankful for a break in the severe pain. It seems to come and go in it’s severity. I don’t know what the future holds with it.

Pain has been the worst problem in my life. I hurt in my back when I stand up or lie down. When I lean back in the recliner my spine gets a break from gravity. My muscles don’t have to try to hold up my back, which feels so weak and tired.

Lately, I have tried to push myself and participate in life. Over a week ago, I went to church and got out with the family. These excursions were taken slow and I didn’t really exert myself. But, I’m still trying to recover from the pain, swollen feet, ankles, and legs. I’ve had more headaches and even my surgical scar has been more painful.

Because my overall health goal is to be more functional, I’m always on the lookout for anything that might help me. The Pathways App is a new app that has a mission to free 1 million people from persistent pain. I would love to be one of those people.

Pathways is truly comprehensive and offers 60 lessons. I love the short audio lessons, quizzes, and ability to track your pain. You can try it for free and if you choose to purchase, there is money-back feature if you don’t see a reduction in pain. I’m learning much from the lessons and will continue to use the Pathways App.

@2019, copyright Lisa Ehrman

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August Thoughts On Chronic Illness

August has arrived and so it’s time to link up with other chronic illness bloggers. The Linkup Party with A Chronic Voice is an interesting way to share our experiences and feelings about chronic illness.

August Thoughts

Capturing

Bloggers love to capture their experiences and share them with others. Capturing memories is also important, and we all enjoy capturing faces and places on our camera. Whether we are using camera phones or expensive camera equipment, it’s the featured subject that is our focus. These are the times that we don’t want to forget.

I’ve been capturing the movements and smiles of my new grandchild. He changes so frequently that I love absorbing all the joy of his little smiles and laughs. Each moment is so precious that I want to record them all.

On a visit to my parent’s home this week, we all sat down to watch home slides. All the photos that my parents took over the years were put on slide film and we get to watch them on a screen. Even though the quality of the pictures wasn’t as great as our digital photos of today, the images were still fun to see.

Many of the slides we watched were from my early 20’s. I don’t even remember some of the occasions captured, but I was overwhelmed with emotion. I was so young and thin!!! It was hard to believe that I actually looked like that. I was much healthier then and it made me sad to see how far I’ve come (in a negative way).

Financing

Financing a life with chronic illness is an ongoing process that seems to get harder and harder. With insurance costs rising, medical debt remaining, prescriptions needed, and new doctors to be found, financing is required. Our savings and retirement funds struggle to keep up with the rate of spending.

Insurance companies pay less and less for things that we need to try and fight our illnesses. We pay so much in premiums, but get less back than we should. It’s always a battle.

Controlling

Because of my numerous chronic medical conditions, there is a need for me to be in control of my treatments. I need to manage my bag of medicines, appointments, and records. It often feels like a full-time job!

Many times the appointments and need to get medication refills will slip up on me. Then, I have to hurry and try to get the pharmacy to fill the prescriptions that I need. When things get stressful I feel like the illnesses are controlling me. And, usually they are.

Being in pain, feeling dizzy and nauseated, and severely fatigued has a way of controlling what I am “allowed to do” each day. I don’t like feeling controlled and it’s a negative part of my life. I try to manage this feeling by being thankful for the positive part of my life. I’m blessed by God with so many good things.

Exchanging

After watching all of those slides from my younger years, I would be happy to exchange my present life with that of my past. At least I would like to have some of that energy back! I know that it’s impossible to relive earlier years. The main thing to do is to be thankful that those times were mine.

I’m thankful that I have the wonderful memories of youth when I had energy and a fairly healthy body. I can’t exchange the lighter feelings of youth for the heaviness of constant pain and the drain that it places on me. I can only tell myself that I’m still the same person that I was before. I’ve learned to feel and exist on another level than I knew existed. I can now feel more for others who suffer, whether physically, mentally, or emotionally.

Motivating

Going home can bring me to a place where I’m reflective. I spend hours thinking about almost every facet of my life. They say that you can’t go home. I know why they say this. It can be emotionally painful to go home.

Whatever I reflect on causes me to be motivated to start anew. Often, being in a place where I have a lot of time to think, I’ll come up with a specific goal. I’m always wanting to improve on my organization skills. So, I head home with a renewed sense of purpose. I love to feel motivated, but it almost always must come from inward motivation.

As I feel motivated to be more content with my chronic illness life, and to improve my organization, I hope you might feel motivated to do something that you need to do. Just because we spend a great deal of time fighting to function with chronic illness, doesn’t mean that we can’t also accomplish whatever God put us on the earth to do.

Proverbs 3:5-6, “Trust in the Lord with all your heart; and lean not unto your own understanding. In all thy ways acknowledge him, and he shall direct thy paths.”

@2019, copyright Lisa Ehrman

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Thankful For Small Moments

If there were ever a dictionary entry for “pacing oneself”, my picture would not be included. Those of us with chronic illnesses have learned that it’s important to pace ourselves so that we don’t become exhausted.

Thankful

The exhaustion and severe pain that comes from over-doing it is hard to describe. This is often followed by a flare. A flare is basically a flare of symptoms, and we certainly don’t want our symptoms of pain to increase.

It’s hard to pace myself. There are so many things I want to do and participate in with my family. During this move, I’ve had to push myself beyond what I should do. Even though I take many breaks, there is so much work to be done that I over-do it. My family does most of the work and that shows how much they support me.

Yesterday was Sunday and we wanted to visit a church. Being new to this town, we had looked online and found a church that seemed good for us. Although I haven’t been able to attend church in a long while, I hoped to start this new life including church visits with my family.

I tried to pace myself by resting the day before and getting a long night’s sleep. Although my feet were very swollen and I was in pain, I pushed through and attended church. It was very enjoyable and I pretended to feel good. After a rest all afternoon, I joined my family again for the evening service.

I felt really exhausted, but again pretended to feel good. My family knew better, but who wants a frowning woman? Church was wonderful and the people there were extremely friendly. As we left the building, I could barely walk. My entire body was throbbing and my feet more swollen than before.

Getting home, I quickly changed into comfortable clothes and collapsed on the bed. The throbbing and aching went from my head to my toes. I really felt like it would be better if I could just be unconscious and stop the awfulness. After taking my evening prescriptions, I was relieved to fall asleep.

I failed to pace myself and I’m really paying for it today. I slept late and awakened in severe pain. Today will be a recovery day. I won’t recover to a healthy, pain-free state. I just hope to recover to my normal pain level.

So, if you’re struggling with chronic illnesses, I hope you’ll be better at pacing yourself than me. It’s a daily hardship, trying to pace oneself. I fail often, but when I do succeed, it really pays off. When I hurt the most I have more time to think. Many feelings overwhelm me.

I feel the common guilt that comes with not being able to participate in life. After I feel sorry for myself, I remember the good moments of my day. I am truly thankful that even though it caused me great pain, I was able to go to church with my family. God has blessed me with great support and love.

Thankfulnesses takes my mind off of my misery. There is so much to thank God for: beautiful blue skies, air-conditioning, and the heat-wave being over. What are you thankful for today?

The LORD is my strength and my shield; my heart trusts in him, and he helps me. My heart leaps for joy, and with my song I praise him. Psalm 28:7

@2019, copyright Lisa Ehrman

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My Moving Adventure

The last week has been grueling with last-minute packing, loading, and driving 1,000 miles in a Penske truck. Now that we’ve moved everything into our new home, it’s a mess! We’re all sore, swollen, and exhausted!

Moving Adventure

Because I can’t lift anything, I was just a passenger on our long journey. I’ve never been this far west and moving in a 26 foot truck isn’t the way to be a sight-seer. We did see many beautiful sights along the way. We also fought the traffic, bad roads, and strange hotels. We’re thankful that we made it safely and no one was injured.

My feet and ankles are severely swollen and that has stopped me from unpacking. I’ve unpacked about 10 boxes in the last two days. Our home needs a good cleaning, but for now we’re trying to get the washer and dryer in our small laundry closet. We have yet to find any clean bath towels. We’ve been using paper towels and hand towels. If I don’t find them today I’ll need to make a trip to Walmart.

Last night the internet was hooked up and so we have television. It’s great to be able to use the internet and watch a little Wimbledon this morning. We seem to live in a quiet and friendly neighborhood. Archie has been very nervous and has stayed right next to me. He’s such an anxiety-filled dog!

I’m very thankful to be here with my family, but I can tell that it’s going to take a long while to have this place feel like home. There is so much to adjust to and I’ll be meeting my first new doctor in a couple of weeks. I’ll have to depend on God to help me and strengthen me, physically and emotionally. This truly is an adventure!

@2019,copyright Lisa Ehrman