My Journey with POTS, EDS, MCAS and MALS

14/11/2025

The smell of roast in the crockpot filled the house. It had been almost a year since I enjoyed that meal, but the time had come to reintroduce it again. The taste was as good as it had smelled until towards the end of our meal a piece got lodged in my esophagus and wouldn’t move. For the next 5 hours I tried everything that Dr. Google suggested to no avail. Finally, around 10:30 we went to the ER. They decided to keep me overnight and do an endoscopy in the morning. Since there were no open beds, I spent the night trying to get a little sleep in the ER. In the morning right before the procedure they said to prevent aspiration they needed to do general anesthesia. Thankfully, I always have an anesthesia report in my purse that an anesthesiologist came up with several years ago when I had a surgery and I was able to give to them so they could follow the dosages. Later that day when my blood pressure was stable, I was able to return home. They took 10 biopsies and the results showed that, besides having a small esophagus, I also have an inflammatory condition which often is the result of a food intolerance. After consulting with my gastroenterologist, I will be doing some food testing.

Other happenings:
Several weeks ago, my neurosurgeon referred me to a neurologist as well as a neurology spine doctor. I saw them both this week. The neurologist was very kind, but these were some of the things he said, “You have a long list of symptoms but some people with EDS have a longer one. I feel very sorry for you. I’m so sorry. You have Ehlers Danlos and there’s nothing we can do about it. I can give you lidocaine injections every 2 weeks to help with your neck pain. You’re doing a good job. I’m sorry, it’s just EDS.” That pretty much summed up our 45 minute visit…basically a waste of time as well as a big discouragement. I then saw the other doctor which was more hopeful. She was concerned about some of my neurological symptoms and is ordering some testing. She understands EDS very well but also recognizes that a person with EDS desires to have as good a quality of life as possible and is willing to help attain that.

As I get older my joints, which should typically be getting stiffer, aren’t. This results in unexpected joint subluxations, i.e even handshakes are making my thumb joint sublux. It’s so difficult when it happens in public because mid smile and handshake I can’t help but suddenly react with a silent open mouth ‘owww.’ My PT is advising me to wear a thumb joint stabilizing brace especially in public. Another example. About a week ago I woke up in considerably more pain in my back than normal which I assumed was ribs, only to find out yesterday that it wasn’t my ribs but during that night when my muscles were relaxed, I had actually subluxed 9 vertebra.

And then there’s the reactive hypoglycemia roller coaster. For over a week my glucose levels had averaged between 75-120 which is great, and I honestly began to think that post surgery my body finally had readjusted, and the reactive hypoglycemia was cured. And then just like that yesterday it reverted back to the spikes and drops and reality hit hard. Hopefully there’s a slow change happening in my body or maybe I was just given a needed break.

Each day the challenge continues to manage blood pressure, potassium and glucose issues. Each day is also balancing between trying to exercise but not exercising too much. Each day I look for ways to be thankful in my circumstances while looking to the only source of my strength. And each day I’m so thankful for your continued prayers.

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10/10/2025

The saying goes, “no news is good news” and that’s the partial truth, thankfully.

We had a little scare with my neck. Something happened which alarmed my doctor. This resulted in x-rays, a visit with my neurosurgeon’s PA, an MRI and a follow up with my neurosurgeon all in a week’s time. The conclusion is that it’s mostly EDS related.
There is some cervical compression in two areas but not to the point of needing a fusion. I will be having more tests and seeing two different neurologists in the coming weeks.

I had another virtual follow up with my surgeon from Virginia. He is still very happy with my progress following surgery. I am able to eat about 70% of what I could be eating. I have lost 8 lbs post-surgery which he wants to monitor but I am getting back my energy which he’s happy for. The next appointment is 3 months.

We took a bit of a risk and went on a driving trip. Last Monday we drove to IA to visit our mother and the family. On Friday we left IA and headed to Fort Worth, Texas. Saturday, I got IV fluids at an infusion center and we visited a botanical garden. Monday was the first day of the Association of Certified Biblical Counselors conference. It was a wonderful few days with 3000 other like-minded people and some wonderful topics. We left Forth Worth on Wednesday afternoon and got home last night. We travel different than many others as I have an entourage of food and other things which need to accompany me but overall, it went well and it was wonderful to spend those days together with my husband.

Thankfully, today is IV day and I really could tell. My bp this morning was 91/47 and it took five pokes for them to find a vein that worked. Those fluids mean so much to me and for a few days I am able to feel somewhat more normal.

But above all God continues to uphold me and gives me the strength to face each day’s challenges. He will never give us a heavier weight in a day, than he will supply the grace and strength needed to carry it. God is good.

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22/08/2025

Just a quick update. I implemented the changes my surgeon recommended and things have improved. Last night he called to see how I was doing and was very happy with the improvements we’re seeing. I will gradually start adding in foods as long as things continue to progress. My next appointment with him is in a few weeks. Although it was a rough few weeks God has still been so much better to me I deserve and he has heard and answered our prayers.

14/08/2025

Thank you for your prayers. I had the CT on Sunday and everything went well. Monday morning my local GI doctor called me from where he was on vacation and told me that structurally the CT looked good but he had other concerns and wanted me to go to the ER. I asked him what they would do for me there and he said some blood tests and check me over. I told him I may just go to the lab to get bloodwork done. After I got off the phone some of our kids helped me to see that this doctor called while on vacation because he cared and I should do what he asked. So off to the ER I went by myself.

The wait was very long (2 1/2 hours). Finally in a room they did some bloodwork which came back good. They then said they wanted another CT this time with IV contrast. Although I reacted to MRI contrast, CT contrast is different. We talked about pros and cons and what to do if I had a reaction and I gave consent. They also started a bag of fluids to help flush it out. The CT went ok. I had a small reaction but nothing that needed to be treated and results were seemingly good. Then one of the lead surgeons came in and said he looked everything over and decided to call Dr. Fowlkes in Virginia to make sure my anatomy was supposed to look like that 😊. Dr Fowlkes assured him it was and so they decided to let me go home and Dr. Fowlkes would do a video call with me to come up with a plan. Over six hours after I arrived, tired and hungry I was finally able to go home.

My video call with Dr. Fowlkes was this afternoon. He spent 30 minutes working through everything. Structurally, everything seems fine and there are no blockages. That’s good news. Then question then is why the regression? He had several reasons he thought could be possibilities. One is since I’m eating a lot of one type of food, I could be having a mast cell reaction to that food causing the pain, bloating and nausea. I will cut out the possible offending food for a while. The other thing that could be causing the increase in symptoms is a motility issue due to EDS. He said that he’s seeing this more among his EDS patients. There are several things that he wants me to try to help resolve this which hopefully gives some relief. He will be closely monitoring things over the next few weeks.
These days have been exhausting, but I’m trying to look for ways to be thankful. Thankful that we can go to an ER. Thankful for a doctor who cares enough to call while on vacation. Thankful for testing equipment to help rule out emergency situations. Thankful for only a little reaction to the tests. Thankful for my fellow surgery warriors for walking along beside me. And above all I’m thankful for God’s sparing hand over me once again. Please pray for courage to continue this journey and solutions to these new challenges.

10/08/2025

Update. Thanks to the Lord all went well with the contrast. I don’t have any results yet.

Two steps forward and one back is how the saying goes. This week has been zero steps forward and two back. Pain after eating has increased, and nausea is worse. Foods that went well 2 weeks ago are not working.

Dr. Fowlkes ordered a CT with contrast but since I can’t have IV contrast due to a previous allergic reaction, it will be done with oral contrast. The CT is being done tomorrow afternoon. Please pray for no reaction to the oral contrast, and that there will be clear answers and direction going forward.llh

12/07/2025

I had my first virtual follow-up appointment last week. Dr. Fowlkes thinks I’m doing great. I’m up to 3000-5000 steps a day. I’m able to eat about 12 foods now which is wonderful. I’ve tried other ones, but they were not a success yet. I’m on a 10-15lb weightlifting restriction for another 4 weeks. I still struggle with exhaustion and nausea but not as bad as it was. Pain is slowly decreasing. Overall, much to be thankful for.

Something else has been on my mind to share with you. I’ve never officially posted this before, but I think if I do it will help you to understand better how to talk to those with lifelong illness.

I was born with a genetic condition called hypermobile Ehlers Danlos (hEDS). I remember living in pain already as a child, and had my first joint surgery at 17. Simply put, the connective tissue throughout my body is faulty…its too stretchy. Having this condition affects every organ, every joint, every blood vessel, our skin and even nerves which are surrounded with connective tissue which is why I had those Tarlov Cysts on the nerves in my sacrum several years ago. This genetic defect can cause other conditions like, POTS, MCAS, compressions like MALS & SMAS, gastrointestinal issues like Gastroparesis and food intolerances, multiple joint issues and subluxations, organ prolapses (all of the above issues I have) and many more issues including extreme tiredness. Having EDS is a lifelong struggle.

While I am so thankful to be free from this abdominal compression (SMAS), my body still has and will have many ongoing struggles. For example, having surgery and being in the hospital 10 days has exasperated my POTS, leading to a struggle to regulate my blood pressure. Two nights ago, after feeling weak and not well for several hours, I thought of checking my bp. It was averaging about 85/48, so I spent the next 1 ½ hours trying to stabilize it so we could go to bed. I could have taken an “emergency” medication I have to make it go up but with mast cell issues i often react to medications. I could have gone in for fluids but who wants tk at 10:00 pm, so I opted to eat Celtic salt, drink coconut water, and push fluids. Eventually it was stable in the low 90’s over mid 50’s, and I started feeling better.

I am sharing this with you to give you a small glimpse of life with EDS and its effects which includes daily ongoing pain and other issues. I still have a hip with a split open capsule and torn labrum. I still have ribs that are constantly going out and need to be put back in. I still have reactions due to Mast Cell issues. I still have an unsteady neck that I’m trying to hold off treating. I still have a torn cartilage in my knee that keeps getting caught in the joint and then I can’t walk until it moves.

But there’s another reason I say this and that is to help you understand what others with chronic illness or invisible diseases could be dealing with in private. We need to be sensitive to what we say to others with chronic illness. Be encouraging, be supportive, be a listener and ask in what ways you can pray or help rather than focusing on whether they can be cured or not.

For myself, it’s not helpful to say things like, “I hope you will be pain free now” or “hopefully this is your last surgery, etc.” While I hope for the same things, in God’s providence it doesn’t seem realistic in my lifetime. I’ve had to work through mourning the life that I thought I wanted, and my outlook on life is now very different. I’ve learned to be thankful for the good hours, thankful for the things that I still can do, thankful that surgeries are even possible, thankful that God continues to carry me through each day, and that He gives me the courage and strength to press on. Focusing on these things is what gives me joy, and in my moments of discouragement, being reminded of the care of my heavenly Father brings the greatest comfort. I am so thankful for many of you who are constantly pointing me to Him; thank you for being with me on this lifelong journey.

30/06/2025

“For I have learned, in whatsoever state I am, therewith to be content.” As we laid in bed the other night and I reflected over these last 3 weeks and especially since being home, I told my husband these are the words that I need to focus on. The fatigue and exhaustion that I still have is unlike any I’ve ever experienced post-surgery, but I’m sure a 10 day hospital stay didn’t help. Just walking out to the garden or to the chickens to get the eggs makes me tired. Doing laundry, making a meal, or sometimes even talking is tiring. Although I’m used to pushing through pain and tiredness, I’m ‘trying’ to patiently listen to my body while gently pushing forward. I aim to get in at least 2000 steps a day and hopefully soon 3000.

For me one of the greatest helps for contentment is focusing on thankfulness. Every morning I meditate and reflect on different aspects of these last three weeks and thank the Lord for everything that comes to mind. When truly thankful, discontent has a hard time making inroads.

My potassium is back in range. Eating is definitely still a struggle. There are about 8 foods and 2 soups that seem to go ok. My weight is still slowly dropping but hopefully it will soon level off. With my entire anatomy being forever changed around, my intestines have to adjust to their new home. My stomach and bowels need to figure things out and that is still a struggle and a prayer request especially that I wouldn’t develop a blockage. I still struggle with nauseousness especially during the night and into the mornings, but thankfully I’m not actually vomiting. The pain is slowly decreasing. I’m almost off Tylenol mainly because the labs for my liver functions were quite elevated and I want to get those numbers back down. My incision is healing very well. I hope to cut back to once a week for IV fluids this week to see how it goes.

My husband, children and grandchildren have been wonderful, and I am so thankful to have come through this surgery, especially with the anesthesia concerns, and I await the day I can serve them once again.

Please pray that my virtual visit with Dr. Fowlkes on Wednesday will go well. Pray also for daily strength and normal stomach and bowel functions.

22/06/2025

I want to take you back to discharge day. Being discharged from Lewis Gale Hospital Montgomery is no ordinary event. The journey that most of us have taken to get to the point of surgery is often almost insurmountable and the hope to be able to eat normally again hardly seems real. So discharge day is a big deal…for a minute we forget our pain because there’s victory mixed with hope. And so the “dinner bell.” The ringing of the dinner bell, symbolizing the hope of eating normally again, is rung to the cheers of the 4th floor nurses, our dietitian, other SMAS patients, Dr Fowlkes and his wonderful NP Lillian.

Sweet Lillian spent so much time in my room. This dear Christian woman was such a godsend. We worked through many complexities and a bond was formed. To hear her express that it was hard to let me go brought tears to my eyes.

Following the bell ringing is putting the star on the map that marks our hometown. There is laughter and hugs and more tears. Friendships were formed not only with fellow patients but all involved in our care. Out of all my 23 surgeries I have never seen a doctor and staff so invested in helping people, and the level of care they gave mixed with their southern charm was phenomenal. Leaving was definitely bittersweet.

20/06/2025

We are home!

19/06/2025

I was able to line up nutritional support if needed, labs twice a week, and fluids twice a week so was able to be discharged. We are driving the 10 hours home today. Please, please pray that I can have the endurance to make the trip and also for my husband as he is tired as well. We’ve thought through the options and believe this is the best way to do it for various reasons.

17/06/2025

O magnify the Lord with me. Words fail me to express how He has taken care of me and how worthy he is to be served. It would take writing a book to walk through these last nine days. Not that it’s been easy; there have been very difficult times but he’s always been there. I long to share some of these things with you but struggle to have the energy to do so now.

Just one example. Imagine my shock when just prior to going into surgery, I was told that this hospital does not carry IV Tylenol. Since post surgery I wouldn’t be able to drink any water to take oral meds and with Tylenol being my only recourse for pain control it felt like it was too much to hear.

“What am I going to do?” It was a question not only to my nurse and my husband but to my God.

A few minutes later my nurse had an idea. They could put liquid Tylenol down the NG tube. It was enough of a plan that I could get through the first days.

Post surgery the plan worked good. Every six hours they would sq**rt the Tylenol down the tube.

We met the other two patients and their loved ones those first days and quickly formed a bond, but what was beyond our expectations was the knock on our door from one of the other families.

She said, “because our daughter has a port our doctor ordered us IV Tylenol to bring to Virginia. We have way more than we need. Would you like some? I asked the doctor and we can share it with you.”

My first thought was Elizabeth Elliot and the bananas over the prison wall. What were the chances that someone from across the United States whom I’ve never met would need IV Tylenol for this surgery and that her doctor would order way more than they would need? God loves to show himself in our impossibilities and so often exceeds our expectations.

Day by day the knock would come and more bags of IV Tylenol would be in her hand. And day by day we would marvel at God’s provisions.

Friends, I don’t think my situation is necessarily unusual. God works through impossibilities many times in our lives. Pray that our eyes may be open to see his great goodness

17/06/2025

Overall Donna has been doing as expected. Today she had a bad reaction to some preservatives in a medication and she had a rough few hours. As Donna was in the middle of the severe pain she exclaimed, “God is still good!”

She is on a full liquid diet and was able to get in about 1000 calories yesterday. At this point the doctor is happy with that and we will continue to increase over time.

One of the main issues we are still struggling with is her potassium level. She received 9 bags of potassium and then they switched to a mixture with potassium in it but they haven’t achieved where it needs to be. Also because potassium is hard on one’s veins she is on her 5th IV site.

Donna is weak but still determined to press on. Yesterday she walked 2000 steps up and down the hallway trying to get things to wake up and to keep herself as strong as possible. Her and the other 2 SMAS patients often visit each and encourage one another.

Please pray for balanced electrolyte levels, the ability to eat food and perseverance to press on. Last night there was again a beautiful rainbow…God’s faithfulness on display once again, an encouragement to all of us.