Chronic Fatigue Syndrom

I was 19 years old in 1990. I was a single mother of 2 children and I was pregnant with my third. I went to the doctor because I had debilitating fatigue. My situation was difficult for a 19-year-old. Being divorced and in my situation when others my age were in college and out partying. That is when I was diagnosed with Chronic Fatigue Syndrome. I didn't know what it was. It was supposed to be an answer to why I couldn't get out of bed every day or do everything I needed to do. 

When I told others about my condition I was told...

That doesn't exist. 

It's not a real diagnosis.

Of course, you're tired. You have 2 kids. All parents are tired.

I'm tired too. Everyone is tired. 

It was very invalidating. It made me feel like there was nothing wrong with me and that I was just making excuses. It was covered in shame. I learned to quit telling people that I was diagnosed with chronic fatigue. There are only a handful of people, including doctors, that I have shared it with. 

This behavior was reinforced by a conversation in 2017 with a geneticist at the Mayo Clinic in Rochester, MN. I was desperately searching for answers at the time. I wanted to return to my full-time job from, what was at that time, short-term disability. I wanted a pill to fix everything. 

I told him that I had mono in 5th grade. That I was diagnosed with Epstein Barr at 19 and then chronic fatigue. 

He said that they were all the same thing and expressed doubt that all 3 diagnoses were accurate. 

Again my experiences were not being validated. Again, I felt shame. I felt desperate that I had traveled so far for answers and I felt disrespected. 

It is now February 2022. That was almost 5 years ago. In that time I have tried to find answers but I have not brought up chronic fatigue to another doctor. I keep trying to find a new condition to blame. I have received new diagnoses but no real answers. 

8 months ago I had a major stress of a cut in income along with a bill from my disability insurance of $40,000 for overpayment. That was a huge hit for me. 

7 months ago we were preparing to sell our house to pay off our debt and reduce our expenses when we had a minor house fire and had to move into a hotel. 2 cars were destroyed in the fire making us a 1 car family. 

6 months ago my dog had to have preventative knee surgery. That was very stressful for me. I tried to give him a reward of a pup cup from Starbucks. He almost died of pancreatitis because his little body couldn't digest that much fat. 

5 months ago a housekeeper stole checks from my hotel room and wrote fraudulent checks on my bank accounts. This turned out to be more about my safety than money to me. I don't let housekeepers clean my room anymore.

4 months ago our basement flooded.

3 months ago I was in a car accident. 

I was in disbelief as all of these things were happening. How can this much stuff happen to one family?

Covid never went away. In fact, it got worse. People are dying. My friends are getting sick. 

We are still in the hotel. Hopefully, it is almost over. We are going to sell our house, finally. The cost of real estate is nuts. Where will we live? I haven't answered that yet. 

The reason that I am telling you all of this is to illustrate that I have been under a hell of a lot of stress. Stress aggravates all medical conditions. I have developed high blood pressure and my diabetes has gotten worse despite losing 100 pounds. 

Do you know what else stress makes worse?

Chronic Fatigue Syndrome

There have been many days when I just can't get out of bed. There is nothing I can do. Of course, the first thing I always think of is Covid. I have been tested 7 times during the pandemic. It's always been negative. I double mask and use hand sanitizer and am not very social. But I still end up in bed wondering what the hell is wrong with me. 

Then I finally remembered. I was diagnosed with Chronic Fatigue in 1990. I have tried not to claim it because of all of the shame and controversy that surrounds it. But it finally dawned on me that all of this stress is causing flare-ups. 

I remembered a documentary called Unrest that came out in 2017. It is currently on Netflix if you want to check it out. It was so validating. I am so grateful to Jennifer Brea for making it. It is so validating. When I got to the part where she is speaking gibberish while lying on her front porch I recognized that I had seen my daughter in that situation. I discussed it with my husband and he told me that he has seen me that way too. 

Here is the link to the trailer on YouTube https://www.youtube.com/watch?v=JvK5s9BNLzA

I never see doctors when I am this bad. I call and cancel because I am too sick to see a doctor. In fact, I had to wait a couple days to type this because I didn't have the energy. 

In the documentary, she talks about how frustrating it is to go to emergency at the hospital. Her husband does too. He mentions how you want to tell them enough but not too much or you won't be taken seriously. 

She brings up how many think it is a psychological problem. I actually quit therapy for a while because I was so tired of everything being blamed on mental problems or my childhood trauma. 

She talks about getting 6 infections in a year. That reminded me of the last 2 years I was working. I was always on antibiotics for something. Is that why IVIG made me so much better? Too bad my insurance won't pay for it. 

She relates it to a light being turned off. I relate to that. I have said that it feels like being unplugged. Or that gravity is too much for me today. Some days gravity is stronger than I am. 

I see so many specialists. I wish there was one doctor who understood. One doctor who knows how to fix this. 

To everyone who knows what I am going through...thank you. Thank you for being in this with me. I am releasing my shame and doing what I can when I can. I am still a valuable person. I deserve to live. I need to recognize my value. 

Things I did with Chronic Fatigue:

I raised 4 children.

I got an associate degree.

I passed the exams to get my series 7 securities license 3 times!

I became a licensed insurance agent.

I learned a lot. Learning is my passion.

I tried a lot of things. 

For my next 50 years I am going to celebrate what I have done. Maybe a lot of that is spent in bed but I have met a lot of great people and had a lot of great experiences. 

I love life.

Thank you for reading.

What I Have Learned About Forgiveness

I was raised that forgiveness is something I can order like a hamburger at McDonald's. I forgave because it was a commandment. Forgiveness was pretending that the bad thing never happened, denying consequences and pretending that I didn't remember the bad thing. Forgive and Forget. That is what people would say. I didn't know how to do that. I felt like I was broken. People said that I held grudges. It was a point of shame for me. 

Since I left organized religion I have had to reclaim vocabulary words. Faith, Worship, and several more. Forgiveness has been a big one. I have had to redefine forgiveness. I have had to figure out what forgiveness really is to me. 

I am 50 now. As I have gotten older my memory is not what it used to be. I don't know if that is because of normal aging or because of my health issues. But the traumas that I have experienced are emblazoned in my brain like scorched wood. No matter how hard I try I cannot just forget my traumas. Pretending that I can is not only impossible, it is not healthy. 

Does that mean I cannot ever forgive? Am I not capable of forgiveness? Does christianity have a monopoly on forgiveness? Since I am not christian, does that mean that I am not worthy to forgive?

No.

The answer to all of those questions is no.

So, what is forgiveness? How do I forgive?

The first lesson is that forgiveness is for the person doing the forgiving. It is not for the person we are forgiving. It is not for Jesus or some other deity. It is a completely selfish act. It is an act of self healing. 

Selfish. That is another word I am reclaiming. Being selfish is not a bad thing. Everyone needs to take care of themselves first. That is the first step in self care.

Forgiveness is letting go of anger. Before we can do that we have to allow ourselves to feel. We have to feel the anger, sadness, pain, sorrow and whatever other feelings are in there. This step can take years. For me it took over 40 years in one case. But that is because I had labeled these feelings as bad and didn't allow myself to feel them. When I allow myself to feel them they process much more quickly. I had a lot of anger. 

I need to express my feelings. That doesn't have to mean confronting the person who hurt me. It can be through art or exercise. The way I express and release my feelings is as unique as I am. 

After I processed my feelings I was able to look at the painful experiences differently. They will always be a part of my past. I cannot change the past. No one can. But I can accept the past. I can accept what happened to me. This includes forgiving myself. I can accept what I have done. 

I was surprised that forgiving someone that I had not been able to forgive for so long felt like a betrayal. It felt like I was doing something wrong. So I had to forgive myself for forgiving someone who had hurt me and others. 

When it comes to the people that I have forgiven the next step is deciding how I move forward in my relationship with them. There is not one answer to that. I decide this on a case by case basis. It depends on who they are, what they have done, how they have changed and who they are now. What choices are they making now? Are they safe? What is the best choice?

Forgiveness is:

1. Allowing myself to feel all the feelings for as long as that takes.

2. Expressing my feelings in a healthy way.

3. Accepting what happened and that it is part of my life story.

4. Choosing the best way to move forward.

Now that I know how to forgive, I can move forward in my healing journey. 

My Value Is Not Stored in My Waist

Let’s talk about my waistline....

When I was 15 I had a 28 inch waist. I have been trying to get back there every time I have lost weight. I am now 50 and it’s not happening. Yesterday I accepted that it’s not because I am fat. 

Yesterday I weighed myself and learned that I had accidentally lost 5 pounds. I was 5 pounds below my goal weight. That’s not good. Sarcoidosis and Dysautonomia can both cause weight loss. I have never needed to think about it before because I have been fat since before diagnosis.

I decided it was a great time to take my measurements! Of course I was comparing them to age 15. That was a learning experience.

Age 15 measurements:

Bust: 36

Waist: 28

Hips: 36

Age 50 measurements:

Bust: 37.5

Waist: 31.5

Hips: 36

Realization number one. I lost pounds but not inches. How is that even fair? My measurements at 130 pounds are exactly the same as my measurements at 135.

I know that I am not fat but my brain thinks that I must be. 

How did my bust grow if my boobs are no longer perky. They are deflated balloons. My rib cage is 34 inches so that implies that I do have actual boobs. But I swear that they aren’t there! 

My hips are the same which is also shocking because my butt is just sagging elephant skin now. 

But the waist! I watched Scarlett O’Hara claim that only a 24 inch waist would do. I thought I was a big girl because mine was 28. Now it is 31.5. I must be a cow. 

But I am not! I know I am not. I decided that maybe waists are supposed to get larger as we age. So, I googled it and learned a few things. 

1. Muscles relax and expand with age. 

2. Skin relaxes and expands with age. 

3. If your spine is compressing from degenerative disc disease like me then as it makes you shorter your waist expands to make room for the stuff inside. 

4. Hormones from menopause can add to your waist. 

So there you go. Even if you have never been fat your waist is going to be larger at 50 than it was at 15. And that’s ok!

Exercise may help but it’s not guaranteed. 

You have not done anything wrong. 

I have normal 50 year old boobs. 

I have a normal 50 year old waist.

I have a normal 50 year old butt. 

I have a normal 50 year old body. With some extra conditions to deal with. 

I am on a journey to love the body I am in. I actually felt prettier at 200 pounds than I do at 130 pounds. So I am working on me. I am seeing a therapist for body dysmorphia. I am telling the girl in the mirror that I love her and she’s perfect just the way she is. 

The same goes for you! I love you! You are perfect just the way you are! Your value isn’t in a number on a scale or a measuring tape or a calendar. Your value is innate. You were born with it. I celebrate you and your body. 

article from Harvard Medical on waist size

When The Going Gets Tough...It Is Exhausting

People used to tell me that if I had enough faith I would be healed. In the energy world it's the secret. The power of positive thinking will make everything work in your favor. I know I have talked about this before but when the going gets tough I always come back to it. Hope is my thing. I am Positively Susie. I plan for everything to go my way. Always! That is the way I live my life. The year that I ended up back on disability my new years resolution was to not use my vacation days for illness. What has been proven to me time and time again is that control is an illusion. That is what people are trying to do with faith and positivity. They are trying to control the outcome. I recently learned that controlling adults had traumatic childhoods. The more controlling they are, the more traumatic their childhood was. Telling them that they are controlling will not heal their trauma. Trust me. I have had many people tell me in my adult life that I was controlling. It has not protected me from having trauma in my adult life. 

So, what happened today to trigger this insight? Why am I talking about faith and positivity again? Let me tell you. 

In March 2020 as the world was turning into chaos at the rise of the covid 19 pandemic, the stars seemed to align and bring me everything I ever wanted. Well, almost. I was still disabled. My husband was still disabled. Some of my relationships were less than perfect and I didn't live on a beach. But! We were able to buy a home that felt perfect and adopt a couple of adorable puppies and go into a ton of debt to make our house just the way I wanted it. It was ok because I had a plan. I was excited. Part of this plan was that my husband would continue to drive for Uber part time so I could pay off the debt. 

Uber was such a gift to my husband. Since he became disabled back in 2000 he has been looking for something that he could do part time, when he felt well enough, and that he enjoyed. He didn't find it until 2017. In Uber he found a job where he didn't have a boss and he didn't have to show up if he didn't feel well. It wasn't meant to be relied upon. It was just meant for fulfillment. 

That was a year ago. What does that have to do with today? 

Let's go back to September 28, 2020. My husband has a rare condition called Multiple Venous Malformations. One of these malformations is in his head and presses against the eustachian tube in his left ear, sealing it off. That caused pressure to build up in his ear. It was uncomfortable. So, we went to an Ear Nose and Throat doctor who kindly offered to put a tube in the tympanic membrane so that air could circulate and relieve the pressure. My husband accepted. Unfortunately, the relief never came. You see he ended up having a bad reaction to the tube. His ear got infected and his tympanic membrane disintegrated.  He was finally referred to a surgeon to reconstruct the membrane. 

Fast forward to January 7, 2021. That was the day of surgery. It turns out that a tympanic membrane is pretty important. Because of the exposure he had chronically inflamed tissue in his ear and the bones in his inner ear had fused together. The surgeon reconstructed the ear canal because it was oddly shaped and made it difficult to work. He replaced the incus bone with a prosthetic, removed the inflamed tissue and used a cartilage graft to make a new tympanic membrane. He anticipated that my husband would be back to rideshare driving within a couple of weeks. 

He was wrong. 

Today is March 23, 2021. My husband is basically deaf in his left ear. He is finally recovering from another infection in that same ear. Since the surgery he has had to go to a hearing and balance center to deal with vertigo in his inner ear. He has had 2 emergency hospital visits because of pressure headaches in his central nervous system.  He has worked with his neurologist to find the cause and treatment to no avail. The vertigo is slightly improved. The pressure headache has improved. But he is still miserable. Today we found out why. 

When humans are babies they have more bones. That is because some of the bones fuse together as they grow. Part of these bones form a container that houses the inner ear. My husband had a CT today. In the CT the doctor was able to see that my husband was missing some of the bone that is supposed to protect his ears. This is true for both of his ears. The doctor believes that when my husband was a child he had a lot of ear infections. Because of the ear infections he formed scar tissue in places where he should have bone. The scar tissue is not able to regulate pressure in the same way that bone does, Because of this my husband has always been extra sensitive to pressure changes. Because of the surgery, this is now worse in his left ear than it was before the placement of the tube last September. 

We don't know if my husband will ever completely get rid of his vertigo. We don't know if he will ever regain his hearing. Most likely he will need to adjust to a new normal. We don't know if that new normal will include driving for Uber. He said that he is starting to get used to the ringing in his ear caused by the hearing loss. He has an appointment to see if hearing aids are an option. He is going to see the hearing and balance specialist for exercises to help with his vertigo. If his situation hasn't improved in 6 months he can decide if he wants to undergo another surgery to repair the bone that didn't form as a child. 

What we do know is that life for my husband is harder than we thought it would be. Before his surgery, in January, we started a vegan diet in hopes that we could be healthy old people. But for us it seems that being diagnosed with new strange things is our normal. Even when we believe it will be different. Even when we think positive and have faith. We get knocked down and we get up again and we say, ¨We got this.¨ But then there is another this to get. and another. and we get tired. 

Tonight I am tired. We have been knocked down too many times. We are tired. 

In this diagram the spongy looking parts are the bones I was referring to. For my husband the bony part above what looks like bunny ears is what has been replaced by scar tissue. It is amazing how very important every tiny bit of the human body is.

Tips for People Diagnosed with POTS after Covid 19 or Any Other Time

Photo by Hush Naidoo on Unsplash

A lot of people who recover from Covid end up with POTS.

What is POTS?

Postural Orthostatic Tachycardia Syndrome

It is not rare. It is just seldom diagnosed so people suffer and don't know why. 

POTS is a malfunction of the autonomic nervous system. Your autonomic nervous system controls everything that you don't think about. IE: breathing, digestion, heart rate, blood pressure, body temperature... It can manifest as problems in any of these areas. It may be too fast or too slow or flip back and forth. Symptoms include but are not limited to: dehydration, tachycardia, bradycardia, low blood pressure, high blood pressure, constipation, diarrhea, nausea, vomiting, passing out, lightheadedness and more. You don't have to have all of the symptoms and they may not be consistent.

Covid affects the neurological system. The evidence is loss of taste and smell being common symptoms. 

My daughter has POTS and recently shared some tips from her experience. She started suffering in middle school. We lived in Rochester, Minnesota so I took her to the Mayo Clinic for all of her medical care. Still, she remained undiagnosed until she was in her 20s. Her symptoms were so frightening that she was hospitalized several times to try to determine what was causing the symptoms. She has still managed to live a fairly normal life. 

Here is her advice written to someone who was recently diagnosed with POTS from Covid:

A part of me was in denial about your diagnosis. I really don't want you to have pots but I can't stop you from having pots. 

So to sum up 15 years of health education for you here are my words of wisdom.

•Pain management classes:

Even if you aren't in a lot of pain right now they teach you a lot. My parents became disabled when I was 7 and my health issues started when I was 12 so indirectly I learned from their pain management classes. 

(Mom here - My husband and I both attended pain rehabilitation at the mayo clinic. They teach you how to manage chronic pain with minimal medication. They encourage alternative therapies.)

•a breathing specialist:

I saw one for my migraines and in the past 10 years I've learned that you're breathing controls so much of your body. What you learn from a breathing specialist can be applied to a lot of pots episodes. 

(She is referring to breathing exercises to help manage POTS symptoms. This is different than respiratory therapy.)

•a nutritionist:

Your body's going to start reacting differently to a lot of foods and it can become overwhelming. Don't try and track it all by yourself if you can find a trustworthy nutritionist who knows what they're talking about It's a lot faster and a lot easier.

•physical trainer with heart condition experience

I see Dr Goodman the pot specialist at the Mayo Clinic in Scottsdale and he said there's no cure for pots or the damage that it's already done. The best chance is to stay preemptive and ahead of it. exercising is going to strengthen your body so you're nervous system and your heart don't have to work as hard. That being said I've also considered seeing a sleep specialist but I'm 27 and awkwardly stubborn 🤣 let me know if you decide to do that.

Lastly,

•Tight Clothes and Sodium

You want to go back to work and I think you can still do your job. It's just going to be a different approach. It's kind of like learning how to live again, tight clothing I love corsets and super tight workout clothes. I have a cousin who loves bodysuits anything that helps support your body is going to put less work on your heart and that's going to help a lot. The sodium helps you retain your fluid but for some reason when you have pots you don't retain it very well and so your sodium is going to help a lot. 

I'm Mexican and grew up eating Lucas and Tajin and so I like to get the beer salt in the liquor section and just eat it by itself cuz it's flavored. BCAs are excellent, I also rotate gatorade and Liquid IV. 

(Compression helps circulation. compression stockings and abdominal compression are recommended. Lots of salt and fluids are also recommended.)

That being said, avoid chasing a cure. Hope for accidentally curing yourself, but find peace in knowing you might not. 💙 Having POTs can be fun, scary but fun. 

Thank you for reading my novel 💖🤣

Susie again:

I hope you find these tips helpful. I wish I had known what was going on when she was 12 and this first started. It was scary. But she still managed to play football and golf and be very active in school and church. She is amazing. She also has to deal with ADD and Dyslexia. But she does it. She is a success. 

She was told that it was safer to play football than to run cross country because of passing out. If you pass out during football you land on turf which is soft and you are being watched so someone will know right away. She had to give up cross country running because of the possibility of passing out on a street or sidewalk and not having anyone around to take care of her.

I have Dysautonomia which is a more generic form of the same thing. I was told that I need 6-8gm of sodium per day to keep my blood pressure up. This is a new symptom for me. I used to have high blood pressure. But I was still encouraged to consume sodium for my Dysautonomia. I also need to drink a gallon of water every day. This helps with lightheadedness, low blood pressure and tachycardia symptoms. I have to take heart medication every day to slow my heart. Every patient is different so it is important to see a knowledgeable doctor and seek proper treatment. Not everyone can get in to see Dr Goodman. I see a heart rhythm specialist. He diagnosed and treats me. I use a rollator because I need to sit frequently. I cannot stand in lines.

You can have a happy life with a wonky nervous system. 

 

Beauty Rituals

I have enjoyed beauty rituals since I was a little girl. I always played in my mother's make up and closet. She had gold lamé pencil pants that zipped up the side and boots to match. She had long lace robes.
I was really good at make up before I was teen. I remember being an extra for a TV movie and the make up artist let a child do my make up. They all praised him but I was furious because he got eye shadow in my brow.
By the time I was 12 I devoted hours to primping each week. Removing unwanted hair, bathing, lotioning my skin, learning the latest trends in make up and hair. We didn't have YouTube in 1983. My mother paid for classes at modeling schools and department stores. I learned to have the latest styles on a budget.
A friend once showed me that she could wear 7 different colors on one eyelid! I had to go home and perfect the art.
I longed for the high cheek bones of the runway models but I knew that each day I turned the canvas of my face into a work of art that would fit in any video on MTV.

I got older and had children. But no matter how bad things got I would always find a way to make myself feel beautiful.

Once, in a domestic violence shelter, we received a donation from Victoria's Secret. I may have been 19 and pregnant with my 3rd child and I didn't know what was going to happen next but I had silk pajamas for the first time in my life. And a thick terry cloth robe. It felt like safety, comfort and luxury wrapping around me every time I put it on.

My body changed. I got older and hair styles changed and it was harder to keep up. I really tried.

The hardest criticism was when my teenage daughter told me that my make up was outdated. Why did my mom's make up from the 50s and 60s become classic and mine from the 80s and 90s become outdated? It wasn't fair.

Today my hair was weighing me down. I chopped it. I am 49. I am overweight. I don't even know what is in style. I took a shower on my shower chair and tried to pumice the huge calluses off of the bottom of my feet.

What would she think of me now. That teenage girl. I wish she would come and visit and make me feel beautiful again.

Oh wait. this is supposed to be positive and I am making myself cry. I am beautiful. I know that. I am grateful that I could get in the shower today. I was wearing the same pajamas since Friday. I am feeling a little better. My hair is a little lighter (less heavy), my calluses are a little smaller. I am grateful for beauty rituals and memories of feeling like a princess.

What do we do when hope is lost?

When my husband, Antar, and I were young and getting to know each other's bodies I noticed the veins in his left leg were different than anything I had ever seen before. In some places the veins appeared to be on top of the muscle, barely covered by skin. They were bunched up like yarn does when a string has been pulled. I commented that I thought it was related to his problems with his knee. He was sensitive then and didn't appreciate me noticing every mole and freckle. He disagreed with me. We were young.

He had had knee surgeries and they found what they called a hemangioma when he was 19 or 20. He had a surgery to have it removed from his knee. There was no physical therapy. He was stuck in bed for months healing. He ended up having another surgery within a year or 2. This time they were repairing damage to the cartilage. That time he had physical therapy and didn't anticipate having any more problems. He was told that his knee was like the knee of a 60 year old man and would probably always cause him pain.

By the time he was 26 he was married to me and we had 4 children. His knee was causing him a lot of pain. He had another surgery on the cartilage in his knee. The hemangioma was renamed a venous malformation. It was back and we learned that it was bigger than anyone had imagined. It went up into his thigh. Removing it was not an option. So, they did alcohol injections to cauterize it and stop it from growing. It seemed to help. The doctor said the only way to stop the pain in his knee was to fuse the bones together and then he would not be able to bend his knee anymore. Antar didn't even have to think about that. He said no.

On February 16, 2000 he was 31 years old. It was our youngest child's 7th birthday. We got distracted. Antar woke up and his right leg was swollen so much that it was red and looked almost twice the size of his left leg. He never returned to work. He began a journey to diagnosis. He had a venogram at the University of Utah and we saw that there was more vein than muscle in his right leg. We were told he had Klippel Trenaunay Webber syndrome. He became the stay at home parent collecting social security. That wasn't enough to live on so I went to work.

I started at PageNet and within months I was at a brokerage company. While I was there I developed a bad cough. It would get worse when I was at work. I worked in a call center. My doctor couldn't figure it out. The stress of it made me suicidal. I ended up in a 28 day inpatient program at a mental health center. That helped. I was diagnosed with acid reflux while I was in there. That took care of my cough. But it didn't cure everything. I ended up in an outpatient program for a month in Arizona because of my anxiety. I finally got both my physical and mental health under control and was a top performer at work.

Then it was September 11, 2001. I was in Utah but that rocked the world. I didn't know what the world trade center was before that day. I thought my aunt was at the pentagon. I left work. I picked up my children. Everyone told me that I was going against what the president of the United States wanted. I told them I was doing what I needed to do. We spent the rest of the day huddled in the living room watching the coverage on TV. My aunt called me the next day and told me that she wasn't working in the pentagon. She was in a different building. But she had a lot of friends in the pentagon and she was hurting. Over the next several weeks there were bomb threats and evacuations, even in Utah. In October 2001 I was dismissed from my job along with over 600 other employees.

We moved to Henderson, Nevada so that I could find a new job. I went into insurance. We did well for a while but in 2003 we discovered that the health care in Nevada was not up to par. I was telling the doctors in the emergency room how to treat my husband. That is around the time that I first experienced numbness in my arms and chest.

We moved to Rochester, Minnesota to get better medical care for Antar. It turned out that he had been having strokes and he had venous malformations bleeding into his colon. The doctors sealed the holes in his colon and closed a hole in his heart. He stopped taking a medication that was causing strokes. He had brain damage.

Shortly after we arrived we learned that our 12 year old son was having heart rhythm issues. He had several heart procedures. One during the same month as his dad.

I found employment at another brokerage company. I was there for a little over a year before I had to go on disability myself. I had debilitating abdominal pain. That caused depression. Symptoms just started piling on.

Antar found out he didn't have Klippel Trenaunay Webber syndrome. He was being treated by a pediatric cardiologist. He was told that he had multiple venous malformations. They were everywhere in his body from the bottom of his feet to the optic nerve. The best treatment he had was blood thinners but they decided it was too dangerous and stopped. He had some external malformations removed. We learned from his family that he had one removed from his neck when he was 2. There was nothing more to do.

He tried getting a real estate license. He failed the exam by one point. But he didn't have the strength to try again.

He got a diploma in auto mechanics but was only strong enough to fix his own car and sometimes help friends.

For years there was really nothing fulfilling he could do.

I acquired high blood pressure, asthma, diabetes, and rashes in addition to my fibromyalgia, chronic fatigue and depression/anxiety.

Antar and I each went through a program at the mayo clinic to help us deal with pain. I also went through a program to help me with fibromyalgia.

I was diagnosed with pelvic floor dysfunction.

We decided to move to Arizona because my parents were getting old and Antar thought he would feel better in a warmer climate.

After we arrived in Arizona we learned that with both of us on Social Security we made too much money to get medical assistance. We could not live without healthcare.

I returned to work. I did surprisingly well. I worked in finance. We stayed there for almost 4 years. My health suffered. My liver got worse. My doctor thought it was cirrhosis. I had another abdominal surgery. I was sick a lot. I managed to work and go to school.

All of our kids got married and we started having grandchildren.

Our oldest daughter and her husband prepared a powerpoint asking us to come live in their basement in Utah. I wanted to say no but my husband thought it was a good idea. So, we went. It was a good decision. I went back to the brokerage company I had left 13 years earlier. I loved my job. I was doing well.

A few years later my health got so bad that I was forced to go back on disability. I was diagnosed with Sarcoidosis and Dysautonomia and my Asthma got so bad that it sometimes felt like pneumonia.

For 3 years I have looked for answers. I searched for that magic pill that doesn't exist. There's only one treatment that might work for me but my insurance won't pay for it. My doctor says it's because they don't understand the orphan status of my disease.  I finally got there. There is nothing more the doctors can do.

Fortunately for me my husband had dealt with this years before. It hurts so bad. It is devastating. When there is no treatment it removes hope. Without hope.....it is really hard. It feels dark.

The secret is to find ways to have hope anyway. That's why I believe in spiritual coaching, intuition, crystals, oils, burning sage, spells, ceremonies... If a story makes you feel good, it's a good story. I fill my life with good stories. That is where my hope comes from.