My Journey with POTS, EDS, MCAS and MALS

27/01/2026

I’m a planner, a list maker, and an organizer. That’s how I thrive. That’s how I get through each day.

Yesterday was my appointment with Dr. B the vascular neurosurgeon in Ann Arbor. It’s about a 130-mile drive. I was going to go myself, and I’m fine with that…on a good day. But last minute, after looking at the road conditions, my husband rearranged his work schedule and said he was going with me. It was a harrowing drive and took over 3 hours. We estimated at lease 30 accidents; some of them with multiple vehicles. But we were spared and arrived safely.

Even though the 2-hour appointment went well as far as us liking the doctor, I was hoping to walk away with a clear, concise plan going forward regarding my TOS (thoracic outlet syndrome). Instead, we left with a generalized trajectory of where this is leading and the need for one more diagnostic test.

Honestly, last night we were exhausted and very thankful to be back home safely but this morning came the why questions. Why, when I was just hoping for a clear decision and plan? Why another trip back there for yet another test? Why more waiting? I found those questions were weighing me down and robbing me of peace so to my prayer corner I went. After much soul searching and reading God’s word, I realized again he knows just what I need and he reassured me again with a “fear not.” Away with my timing. Away with having to have a concise plan. Away with my fears. I must again trust his timing, trust his leading, trust his outcome, and simply follow behind as a child trusts, and follows behind its parent’s leading.

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14/01/2026

My Day Yesterday

At 6:30 yesterday morning the alarm went off but I had already been awake with a bad right-sided headache. Because I had a fasting test scheduled for 8:00 in Hudsonville, I needed to shower and leave by 7:30.

While in the shower, I noticed a 3” long hard vein under my right arm which was never there before.

At 7:10 I called my doctor’s office and talked to the nurse. She said she would call me right back. Within 5 minutes she called back and told me to go to the ER. I told her I really wanted to go for this test so I would go after. Reluctantly she agreed.

7:30 I left for the test.

8:15-9:15 I had the test. My headache was so bad I was almost throwing up. The headache comes from the TOS compression.

9:30 My husband and I met in a parking lot near the hospital. He brought me some food so I could eat and take Tylenol before going to the ER. I was at the point of dry heaving.

9:50 Arrived at the ER. I thought there would be a long wait but they took me back to a room within 15 minutes.

10:00-3:00 A long 5 hours. My husband stayed with me for about an hour and then went to work. Two ultrasounds and several different eyes on it. The conclusion was that it is not a blood clot yet but an inflamed vein. Not only blood clots, but also near blood clots can happen with TOS (Thoracic Outlet Syndrome). The attending physician recommended hot compresses several times a day to help prevent a clot. She also urged me to call the surgeon’s office and try to get a sooner appointment than January 26.

3:15 Home. Hungry, exhausted and somewhat overwhelmed. My headache was manageable. I called the surgeon’s office. The nurse put in a high priority request and he will call me back.

4:15 Decided to go for a walk to think. Unfortunately, the jarring brought back my headache. Sometimes I can’t win.

A note of thankfulness. The entire time at the ER I had just seen the resident. I have nothing against residents as I know they are learning but he had no answers except maybe that vein was always like that. Before I left, I asked if it would be ok to see the attending physician. She was such a blessing and we had a good talk level to level as she understood I was not new to medical issues. I always try to find something to be thankful for in all my hard circumstances and yesterday I left that hospital not only very thankful I didn’t have a blood clot, but also for that conversation. It really made me think that God’s hand of affliction is pressing me down but yet I can feel his right hand holding me up. The visual I have is that I am in his arms and all is safe. Isaiah 41:10.

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11/01/2026

The prayer needs continue and I so appreciate your prayers.

Getting IV is becoming more difficult. Having Ehlers Danlos veins are already tricky and then add 11 years of weekly IV’s, my poor hands are like scarred and bruised pin cushions.

Add to that, POTS and often low bp due to dehydration doesn’t help one to have plump veins. Last week Friday my first vein blew within 5 minutes. It then took two more nurses and 3 more tries to get one. Yesterday, my bp was 90/56 when I arrived so I knew it wouldn't be easy. Took about a half hour and 3 tries. Weekly the nurses are urging me to get a port.

This coming week I have an appointment with my cardiologist and I promised him I would consider a port and give him an answer. I’m so tossed about what to do.

Prayer need #1. Pray for a direction and a clear decision.

Regarding all the other compressions.

I had more testing for Thoracic Outlet Syndrome (TOS) which involves the first rib compressing nerves, arteries and veins. The testing was more confirming. Besides neck and shoulder pain, often my hands have pins and needles and my fingers are bluish. There is one reputable vascular surgeon who specializes in TOS in Ann Arbor. My doctor sent a referral and I was able to get an appointment for January 26.

Prayer #2. Please pray for wisdom at this appointment.

I had my first zoom therapy session for TOS. It went well but part of the therapy is teaching how to relax certain muscles. The problem is my muscles help hold me together since my connective tissue can't. When I went to PT two days later, I had 10 segments of my spine that were off and my shoulder had subluxed.

Prayer #3. Please pray for wisdom on whether to continue to try this therapy.

On Tuesday I will be having an 1 ½ hour test for another compression and then more testing will follow for the other two compressions. I’m having such an increase in pain; daily activities are difficult.

Prayer #4. Please pray that this test result will give direction.

Through this all God continues to show me in many ways that He is still caring for me. One way in particular was with our insurance. For the last two years they have approved my continues glucose monitor (Dexcom) for my reactive hypoglycemia; that is until Dec 1. My doctor sent in a new prior auth which they denied. He sent in an appeal which they denied. He sent in another appeal which they denied. During this time, my doctor gave me 2 loaner dexcoms (they each last 10 days) to use. Finally, someone at the insurance company suggested I do an urgent appeal which I did. They sent a letter back saying they would have new doctors consider my case on January 2. After Christmas I started calling every other day in case they would have considered it earlier. On December 31, my final Dexcom expired. I took it off, then went for an MRI, came home and decided to give them one more call before the new year. To my utter amazement and surprise, she said they were approved. Not before my last one expired, not a week later, but the very day. What a God we serve! His gracious kindness once again.

Why do I worry? Why do I fear?

He will lead. He will guide. I need to trust. I need to follow.

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12/12/2025

Neurogenic Thoracic Outlet Syndrome (NTOS) - a very painful condition, where nerves or blood vessels between your collarbone and first rib get compressed, causing a range of debilitating symptoms like burning, tingling, numbness, and weakness in the neck, shoulder, arm, and hand. The pain can significantly affect daily activities like driving, computer work, sleeping or lifting.

This is the news I received this week.
My 12th diagnosis, mostly stemming from having Ehlers Danlos Syndrome.
First ribs should only move slightly with breathing, my PT can push my first rib, on either side of my neck, down over a centimeter due to EDS. This movement then causes compressions.
The night pain causes many sleepless hours.

I’m numb.
Overwhelmed.
Tired. Tired of having to research and figure things out myself and then find doctors to order the testing to make it official.

But I also feel hopeful.
Thankful for answers.

TOS has three types. So far one has been ruled out (venous), one is confirmed (neurogenic), and the third one (arterial), I’ll be tested for on December 23.

How am I going forward?
If the end result is only the one neurogenic type, there is a non-surgical path that I will pursue first which will include travelling to Connecticut for a weeklong intensive therapy (which isn’t covered by insurance). The first available time we could do that would be in April when my husband has break. Until that time I will do some online sessions to try to help with the symptoms and pain.

With a new added diagnosis on top of everything else (although the symptoms aren’t new), joy eludes me. It’s there but I need to look deeper to find it.

But when in quiet meditation I’m reminded that I’m walking in His footsteps and He understands, courage builds.
I can press on,
and the weak smile forms again.
God is still good!

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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.