June 8, 2025 Many Seasons, Blessings Can Come in Unique Packaging - Celiac Disease, A Walk Through Medical Memory Lane and an Update
8June2025
Many Seasons, Blessings Can Come in Unique Packaging
Celiac Disease, A Walk Through Medical Memory Lane and an Update
Pretend you are at the beach, under your umbrella all while enjoying a picnic escape. Or perhaps you are sitting on the deck at your favorite restaurant, with an ocean view. Can you smell the ocean air & hear the gentle waves? As for me, I am typing at my favorite window with the view of St. Croix River and people passing by on the walking trail.
Have you ever wondered, if blessings can come from over 40 years of battling a disease you didn’t know you had? It might shock you to know that, “YES, they can!” Blessings come in different gift wrappings, just as we are all uniquely made, so are our gifts\blessings from God. We all go through many hard season’s of life to have them revealed. In the Bible Jesus told us that we would go through these trials. How merciful was He to warn us and provide our hope in him as part of the package deal.
Some of you have also heard me say many times, that we go through our trials, so that we can help someone else in the same way that the Holy Spirits presence has done for us. May this true story, show you the power in that truth. Please remember that our trials can truly be our blessings that we can pay forward through sharing our testimonies with others.
Some of you have heard me say, “Strong health has never been my gifting.” Well, it’s time to step into “some of” this part of my story… in hopes it will help someone else. Remember that’s what we are here for.
My undiagnosed disease was not revealed to me until I was in my early 40’s. I spent years of being very sick with stomach, gut & serious bowel issues that were accompanied by severe pain, migraines, muscle & joint issues & anemia. This journey of finding all the wellness I could receive, this side of Heaven, went on for about 30 years. It also contained multiple wrong diagnosis’s and many unnecessary prescriptions, “that only treated the symptoms and NOT the cause of my health issues.” At times throughout this journey, I was made to feel that there was nothing wrong. Which made me feel “less than”, as I knew my symptoms were painfully real.
Over & over I heard, “Your test results came back normal. Your bloodwork came out normal except you’re are anemic.” etc.
Some medical professionals even asked me, “Are you depressed?”
The first time I heard those words, my response to the doctor was, “I don’t think so. I’m just frustrated and sincerely tired of being this sick for so many years.” I knew the doctor had good intentions so I also replied, “I will go home and ask my husband, as he knows me better than anyone else.”
As I processed this question on the way home, it did shake me up. From my perspective, I felt my doctor was telling me that he thought my symptoms weren’t real. Seriously, I lived with these symptoms almost daily and they kept getting worse as I aged!?! At one point I lost 12 pounds in two weeks. No one had been able to help me and I was doing the best I could by following what I had been instructed to do and to use the prescription medication that each doctor and specialist had prescribed. All hoping it would help me gain a foothold on my health.
The more I thought about the question, the more it shook something deep within my inner spirit inside. When I got home I asked my husband, Jamie.
It took courage but I told\asked Jamie, “The doctor asked me if I was depressed. Do you think I am depressed?”
I still remember Jamie’s response and it was pitch perfect, “You are a lot of things, but depressed isn’t one of them.”
Jamies response was sincere, warm & truthful. Something inside me breathed a sigh of relief.
This Sunday I have a cold, so I knew no one would appreciate getting exposed to it. I made the executive decision not to go to church and watch it on-line. Thank you for all who serve and make it possible to watch on line.
As Jamie & I were having breakfast this morning, I noticed he wasn’t ready for church.
I asked him, “Why aren’t you ready for church?”
His response was, “I’m going to stay home & watch it online with you.”
My response was, “If I were you, I would so ditch you & go!”
We both laughed out loud. He said the reason he laughed so much was not just my tone, but the expression on my face.
Then he said, “If you only could have seen your face when you said it.”
I’ve always believed, it’s not what we say but how we say it. Now I know for sure, that facial expressions are a picture that does paint a thousand words.
Jamie brought me a shirt the other day and I LOVED it.
It says, “When God Made Me He grinned and said, “This’ll be fun.” I always tell people my guardian angels name is Buck. You can guess why.
Though I wasn’t going in person today, I wore it anyway. It certainly made me laugh & smile when he gave it to me.
Was that rabbit trail fun? Let’s go another one. Once, after having an unexpected C-section, accompanied by 21 stitches down, so I could give birth to our 10 lb 1oz baby…
When I first woke up, my doctor was present and told me,
”You have a 10lb 1oz baby boy. Would you like to hold him?”
I said, “Yes”
Then I said, “Where’s Jamie!?”.
My C-section was done the old fashioned way as I had my treasured Doctor McBride. He was the old school, gentle, kind doctor, who even made house calls. I was given anesthetic which put me to sleep during the C-section. Honestly, I was kind of irritated that Jamie had gotten to hold our baby first and that my immediate family found out I had a baby boy, before I woke up. Seriously, I am the one who had carried him for months. We had chosen not to know if it were a boy or a girl before I gave birth. I had been taken off my feet for the last two months of my pregnancy so, I wanted that to be a surprise that I had to look forward to.
The next thing I remember is Dr. McBride asking the nurse to give me an injection because I broke out in a rash from my neck down because of the demerol pain medication. We didn’t know that I was also allergic to latex at this time. Yes, blessings can be mixed with strong emotions.
That first night, as Jamie was sitting on the edge of my bed at the hospital and we were talking, he said, “I think we should have another baby in three years.”
Not exactly music to my ears at this point with all I had been through that day. He had improved from wanting 8 kids to a desire of 5, at this time though. Almost 3 years to the day, we had our second, Lindsay. She did not sleep and was still getting up at night when she started school. Jamie agreed that 2 kids were enough.
They kept me in the hospital for about 5 days back then. As I was being released, the nurse instructed me NOT to lift anything 10 lbs or over for the next 6-8 weeks. How was that going to be possible, as our sweet new baby weighed over that!?!
When I got home from the hospital I had a heaviness that I had never experienced before, which made absolutely no sense to me. I had a husband who loved me and a healthy new baby, so why would I cry at times? Later I found out it was postpartum depression. My sweet doctor MacBride made a house call and he told me that he knew exactly what was wrong and to just take these pills for a few days\weeks and I’d be fine, and I was!
On my journey to wellness in my late 20’s, I remember having an older doctor, who was trying to figure out why Mother Nature had been so difficult for me. The nurse took me in the room and told me to get ready for my exam. I got in my ball gown and climbed up on the table. The doctor came in and did a detailed, initial interview with me. Then it was show time.
He walked up to me and pinched my belly and said, “You’re a chunky one.”
I didn’t miss a beat, reached over & pinched his chunky belly and said, “Well so are you.”
Here I was beginning to use my voice. After this colorful 1’st appointment, I still did use the prescribed medication\s through time over a year or so and he made several adjustments. Everything just kept getting worse and my pain & flow was out of control. Really God, couldn’t you have given we girls a “shut off valve”.
At my last appointment with him he said, “ I am going to give you a new medication that should help you, but it’s going to increase your flow for a while.”
My response was, “Did you not hear me at all?! What do you want me to do, run around with a bucket underneath myself?”
He retired before my next appointment. Not sure if it was me or not.
My new doctor was young and was easy on the eyes. He said, that I had tried all that he felt there was to try. Basically that I had been “painted in a corner”. He felt that I needed a hysterectomy and to go home and discuss it with my husband and let him know.
I said, “Sign me up, I just want my life back.” When my new doctor told me that they were going to use the same incision as my 2 C-sections & which my two other previous procedures had also used.
Well my response was, “Why don’t you just install a zipper. It would be easier that way.” I did get him to smile.
When I woke up from that procedure it was no picnic. No baby to look forward to holding. Everything had to find a new position in my stomach area and it did involve pain. When he came in to see how I was doing and to go over how the procedure had gone… well, I was still under some anesthetic influence.
In a stoned whisper I said, “If I ever have a baby or a period after this, I am going to hunt you down.” This is Paulette on drugs. 😂🤣😂
After I’d been home for a few days, a close family friend, Ron Beckwith, called me and said, “You must feel like a deer that’s just been dressed only you’re still alive.” It made me laugh out loud and laughing really hurt at that time. Yes, we are still Friends today. Apparently we understand each other’s sense of humor.
Meanwhile zip forward in my ADD Time Machine. Snap OFF this rabbit trail of baby memories and operations. At this time, I continued fighting hard to find out why I felt so sick almost every day. I had migraines 4-5 days a week. Some of them were very debilitating… at times… they were the go to bed in a dark room; pull the covers up over your head, close your eyes and don’t move. Those who’ve experience migraines will sadly understand my description. My vision was also sometimes very odd when I had them. It was like looking through the heat rising off the paved road in the summer… wavy & very blurry.
All my life I had battled anemia on & off. No one could pin point a cause. When I lost the 12lbs in two weeks I was referred, to have my first colonoscopy. Any given day, I never knew how I’d feel when I woke up. There was no pattern to my sickness that I could find. Various doctors had diagnosed me with multiple health issues like chronic fatigue syndrome, fibromyalgia, irritable bowel syndrome and a form of arthritis to name just a few. My muscles & joints pain was so intense at times. I had the hysterectomy in my early 30’s. My stomach used to swell up so bad that I was often asked if I was pregnant. When I went to the hospital to have my colonoscopy, a sweet Candy Striper insisted that I get in a wheel chair.
She had a smile and said in a gentle voice,
“You need to get in the wheelchair.”
With a very puzzled look on my face I asked, “Why?”
She responded, “Because it is the hospital policy.”
I told her, “But I don’t need a wheelchair. You could be helping someone else.” In her kind voice, she stressed that I really needed to get in the wheelchair.
As I thought she was so kind with her approach and might be new at this job, I cooperated. Off I went for my free ride. Up the elevator for my next adventure. To my surprise she had wheeled me to the maternity ward! 🤰I’m sure my face was priceless, but you should have seen the look on her face when I proceeded to tell her that I wasn’t pregnant. 😳 Her face turned bright red.
My response to her embarrassment was, “That is why I am here to have a colonoscopy. They are trying to find out why my stomach swells up so much.”
Then I reinforced this by saying, “You are not the first person to think I was pregnant.”
At one point I wasn’t sure what I might do to the next person who asked me if I was pregnant or when I was due!
At this time, they were keeping me all night in the hospital to do the colonoscopy. This was because in order to accommodate for my latex allergy, I needed to be the first patient of the day, so NOT to get exposed. (We also lived on Campobello at the time. That night I had the pleasure of doing “the great wipe-n-swipe” in the hospital. Many of you know that dance. It was the first time I had ever had the pleasure of drinking the then required 3 quarts of “rotten cucumbers mixed with sea weed”. I had sent Jamie off to go for his Fisherman’s Association Meeting early, thinking that this was a non-issue. The issues didn’t start until I started drinking the required potion. The nurses keep coming in and checking on me and I’d say I’m fine, all the while trying not to throw up this wild concoction. They were concerned when I hadn’t started going yet.
I just told them, “That’s why I’m here… to figure out why”.
In the end I got to hold a newly born baby, while I waited for the moment when I’d have to spring into bathroom action. I was right across from the nurses station. Long story short, there was a young mother that had given birth and then had to be rushed in for a surgery. She was back in her room and she needed to rest. I was overjoyed to have the opportunity to drink my non-chosen beverage of the night, while holding this baby. My way of meeting this challenge was to drink some of the potion every 15 minutes. I was helping the new mother and the baby was helping me by giving me something else to focus on, so I could choke down the witches brew without throwing up.
For many years, doctor after doctor kept giving me pills to address what they thought I had. Each set of pills came with its own new side effects too.
Finally I reached the point that I cried out to God and said, “I don’t believe this is the life you have planned for me. Please tell me what to do”.
I listened and I did what God instructed me to do. WARNING, I am not promoting this choice without consulting your doctor first! For me, this truly was stepping out in faith in a completely new way… I threw all my pills in the garbage and started journaling my symptoms… what time they occurred, what I had eaten to see if there was any pattern or connections. My question became could I have an allergy. Along the way, my journey led me to a new family doctor, Dr. Acheson, and then an allergist in Bangor, Maine. Which in turn opened the door for me to meet with a very special, gifted nurse who rescued my quality of life, Katherine Musgrave(sp). She was the nurse that worked in Dr. Shapero’s (allergist)office. In advance of seeing her I completed the required forms and typed a six page email, which included my complete health history… all I had been through… symptoms, what tests, procedures, operations, medications & treatments which I had completed.
See it’s not just you all that I get lengthy when writing. Yes, I still do it with my doctor’s too. I have been told the only questions that are stupid, are the ones we don’t ask. No wonder my medical records are so thick! When I met my new family doctor I brought my medical record with me. She said she could find what she needed on line and if she couldn’t she would ask me. First time I have ever been sent home with my paper medical records. 🤣🤷🏼♀️😂.
Back from that rabbit trail. Did you see the squirrels? Then I asked the nurse in my email if she could please help me. I pushed the send button for this email, with my hope intact, as God had been leading the way and opening the doors for me.
Within a couple of days she responded to my email and said, “I think I know exactly what is wrong with you. I will share with you when you come to your next allergy appointment with Dr. Shapiro. I will meet with you after.”
Can you imagine the well-spring of hope & joy this brought me when reading these words from my “angel” nurse? By listening to God and sending my detailed email He had opened a door for me to receive solid hope & help in a new way. Someone had acknowledged all I had been through, recognized my symptoms, and felt she could help me!
Come to find out I had full blown “Celiac Disease” & could not and still cannot consume ANY gluten! If I do, within 1/2 hour - 1 hour I became very ill, with swelling in my stomach, strong contractions, bowel spasms, vomiting, migraines and excruciating pain. It’s the kind of pain that takes your breath away. It has dropped me from my feet to my knees, in writhing pain many times. 🥴 After hours of the initial intense reaction was over, it could take me months to straighten out my muscle & joint pain, stomach, bowels & gut issues etc. and I do mean months. It took me 40+ years to get an answer. After I was diagnosed my Mom told me I had had bowel issues since the day I was born.
Celiac Disease is nothing to play around with. I was told by a specialist that I would have bowel cancer, if I could not straighten out my bowels. During the season of going undiagnosed, my bowels would repeat a crazy cycle. I would sometimes vomit, have severe painful diarrhea and then not go for 7-10 days. After also being left with the myriad of side effects to deal with for months… well it was heart breaking to think that this all could have been avoided by eating gluten free. Yet finally finding this out was a HUGE blessing\gift from God. Yes this gift was wrapped in a very unique way. It was in a way I would never forget.
If you or anyone else you know has symptoms like I have mentioned, it would be worth going to the U. S. or Canadian website for Celiac Disease and reading. Consult with your family physician. Also know that some people can my minor issues or be non-symptomatic and have it too. It can be determined with a simple blood test but sometimes other doctor’s feel a biopsy is needed etc.
The bottom line is that with this disease, the villa of your bowels lay flat so you don’t absorb your nutrients when you eat. This in turn causes many side effects which can lead to several misdiagnosises. Come to find out some of the medication I had been given had a “gluten binder”, so what I was given for medication would make me very sick. A vicious cycle of repetition that God helped me break. Finally they were treating the cause and not just my symptoms. The crazy issues like migraines disappeared!It was a miracle from God to me.
So how did this turn into a blessing. One of my children was diagnosed with Celiac Disease, the other and two of my grandchildren all have gluten sensitivities in varying degrees. I got to save them and many other people, from a life-time of going through the devastating things I had experienced. That’s quite an amazing gift from God. Was it worth it, ABSOLUTELY to save others from battling this invisible disease. I know both of my grandmother’s had this undiagnosed disease too. One grandmother had symptoms exactly like mine. The other could not even touch flour. She had to wear big gloves to be able to bake bread and her tummy was swollen just like mine had been... They both passed away before I knew I had the disease or possibly I could have helped them too. I had to go through many valleys, but I’ve learned a lot on this journey to all the wellness I can have this side of Heaven. This is part of the reason why you’ve heard me say that I am good at dealing with pain and limitations. I firmly believe that God DOES give us more than we can handle, so we will turn to Him. On my two journeys with cancer, I have seen people either turn toward God or turn away from Him. I cannot imagine doing this journey without God!
As my Bible verse for the year says, “I will say this of the LORD, “He is my refuge and my fortress, my God in whom I trust.” Pslam 91:2
I would not have chosen cancer but God truly does need His soldiers everywhere. Are you going to turn toward Him or away from Him, if a season like this comes into your life. I highly recommend leaning on our Lord and King. You can still find divine joy and a rare, rich beauty on this journey because spiritual joy does NOT depend on your circumstances BUT only you can decide when you come to that bend in the road.
My recent tests on May 13th did validate why I have been having such increased pain. At least I know that I am not crazy, right? Those of you who know me, please don’t answer that question. 🤣😉 Now I can also show myself the mercy & grace, where I need to. At various times, this is something I am not very good at doing. There are some things I can not keep trying to just push through. When I have tried, it has caused me much additional pain. It will mean more limitations and accommodations on this journey. It’s a good thing I used to be a special education teacher, as this taught me much on how simple accommodations can change someone’s life. My CT & Bone Scans showed significant new osteolysis in my L4 vertebra with moderate to advanced “central canal narrowing progression”; there had also been a moderate burst fracture in the same L4 area. This is what has been resulting in the severe pain at times and the non-conforming movements with my left leg & right arm. We will call this “broken-string marionette syndrome”. It validated the list of the symptoms that I had been having and had shared with my doctors. Examples:
1. Significant pain accompanied by muscle weakness: My lower back has persistent pain and does not feel like it can hold me up, when I am trying to walk for any length of time. (Even when using my walker.) My legs can feel very heavy at times.
2. There is decreased strength in my arms, which makes it difficult when using my right arm especially. It’s hard to lift objects and to perform many, daily tasks most take for granted.
3. Neurological Deficits: At times I have a numbness, tingling or loss of sensation in my left leg & feet.
4. Mobility: It has caused difficulty walking or standing or even settling for long periods of time.
The cancer has progressed in some other areas too. Is this all gloom & doom, absolutely not. I have a team of people to help me work on my mobility issues and the new adaptations that I need to make. When my radiation oncologist set it up my “one & done” radiation treatment on April 17th… this did succeed in stopping the radiating sciatica pain that was persistently appearing by going down my right leg. Stopping this was a HUGE victory in my book. The treatment also stopped the strong pain from lifting my fork or spoon to eat. It also gave me some gains with mobility & pain levels involving my right arm and shoulder. Receiving the test results also taught me that there are reasons for my recent mobility issues and that it is OK to show myself the mercy & grace that will allow me to be in less pain. Praising the Lord for that.
God has made promises in His word and He has never failed me.
He will renew your life and sustain you in your old age.” Ruth 4:15
1. He has given me a husband who truly loves me & helps me walk this journey with Christ-like love, mercy and grace. He has been a rock star through it all. We still have the joy of the Lord in the quietness of the apartment. Remember it’s a divine joy and that is NOT the same as earthly joy as it does not depend on your situation.
2. He has provided for all of our needs & blessed us beyond with our family, beautiful church family and Friends who wrap us in prayer and give us Christ-centered fellowship through it all. Thank you again for each of your gift of prayers and love through a phone call, text message, cards, a visit, support & encouragement etc.
3. He continues to give us a peace that passeth all understanding.
4. He continues to teach me what I need to learn to live within my limitations to have the gift of less pain. It’s been hard, humbling and Holy Spirit powerful lessons of what is possible, if you just humble yourself and listen to God above all the earthly noise. Instead just embrace learning about & using the accommodations that you need. Humble is letting God take a deeper control which can release you to have more freedom in Him. The self-image society portrays of trying to be perfect or to constantly push beyond does not yield the “Be still and know that I am God” moments that God desires with you. Let me tell you, these can be very rich sweet moments that you never dreamed were possible. Paul said he knew the secret to happiness, he had learned to be content where you are.
Paul said in Philippians 4:11, “I am not saying this out of need, for I have learned to be content regardless of my circumstances.” Power, truth and a humbling, sweet blessing, so you can actually be free in Christ.
This Wednesday we will meet with my oncologist to go over my CT & Bone Scan results. I will be able to ask my questions and see things from her perspective to gain a deeper insight. Your continued love & continued prayers are so appreciated. Sending our love, Holy Spirit Hugs and prayers.
Well if you’re still on that beach we started out on, it’s beginning to get darker now, so we best gather up our things and get ready to go home. If you’re still in the restaurant, it’s probably closing time. Maybe we can watch the sunset from our vehicles. After all it is God’s hand-painted picture of love to each of us. May God continue to bless you in just the ways you in every season of your life. ❤️🧡💛🙌💛🧡❤️
