Hello dear ones, much has happened since my last post. But first, how are you? Are you struggling to get a diagnosis or grappling with the reality of a new one? Since my elementary years, I've wondered if I was like my dad...not in how I look or his quick wit. Rather I wondered if my health problems were linked to him. I found an old diary from when I first began to write. I was going to get tests on my lungs because I struggled to breathe during PE. Back then I was scared that I'd have a lung collapse like Daddy. The doctors found nothing and gave me an inhaler...childhood asthma...I'd outgrow it they said. My joints hurt all the time...growing pains they said. Migraines and stomach issues...just a milk allergy they said. Even though my pains didn't go away and more came, I stopped telling them. Weird nerve stuff...blacking out when I stood...who cared to know? Others had worse problems. I knew I was being constantly attacked but my attacker was invisible. Only I knew they were there. Sure people might guess if they really paid attention to my bad days, but overall, I looked young, happy, and healthy.
In high school, my Dad was diagnosed with Hypermobile Ehlers-Danlos Syndrome and two other types (the science behind EDS was new then). I watched him suffer. I noticed similarities. Again I was scared. I knew this was genetic and I wondered what if I have this? My Dad said he wouldn't wish it on his enemies. If I had it, would he regret having me? Would I be wrong to have children? But I was deeply immersed in the word of faith movement at the time and I believed God had to heal me and Daddy too...because I claimed it. I didn't realize then that real faith looks very different. Real faith is trusting, whether God chooses to heal or not, and accepting that HE is God and I am not. However, at that time I was very immature. I thought if I closed my eyes and wished the monsters away, then I would magically feel better. My health got worse over the years but I was afraid to speak the truth of it. I didn't want to claim it but really I was just lying to myself.
My Dad walked me down the aisle at my wedding but later his braces turned into a wheelchair and then from the wheelchair he became bedridden. I bought him a walking stick and told him he would be healed. My Dad died with both of his legs amputated and his working lung full of fluid and it wasn't because he lacked faith. I saw more faith in my Dad than I've seen in anyone. Of course, Daddy is healed in heaven. But I was very selfish and cruel to try to pretend his monster wasn't there or wish it away. I should've carried his burdens. I should've validated his suffering, named the monster, and helped him fight it.
When we refuse to acknowledge the suffering of others (because it's too hard for US) and placate them with platitudes, we are being selfish and hurtful. Sometimes the nicest thing we can do is cry with someone, hold them, or just listen. Let them grieve. Let them hurt. Don't invalidate their experience by trying to shut them up. Of course, there is a time for cheering someone up but often people need a shoulder to cry on first. If someone says they have health issues, please don't say, "Well, you look great!" or "It'll get better!" Those may seem nice but really it's the equivalent of saying, "I don't believe you" or "Stop bothering me with your pain and just get over it." I'm sure you don't mean any of that but it comes across that way. It can be very hard to acknowledge weakness and if a chronically ill person feels they can't trust you with their authenticity or they have to keep proving that they really are sick, they'll probably stop trusting you with the truth of how they feel and you won't be close friends.
Back to monsters...
So my 20s were rough and filled with specialists who either didn't believe me or were annoyed that I had so many health problems and I didn't like their medicine. I had to fight to get tests and to be listened to. I got very sick before they found out I was anemic. I took trips to the ER but still, no one had a clue. I was pricked, scanned, talked down to...all of it...over and over. I watched my Dad fuss with doctors and fight to be heard. I wasn't good at it but I tried to do the same. I pushed for certain tests. I was diagnosed first with scoliosis and then Endometriosis. After six years a geneticist referred me to get the blood test for Vascular Ehlers Danlos. It was negative. I didn't realize I was looking into the wrong Ehlers-Danlos. It's a long story but my Dad was clinically diagnosed with Vascular, Classic, and Hypermobile EDS before the blood test existed for Vascular. Looking back it's clear that he was mainly hypermobile but with vascular symptoms. We now know that hypermobile EDS can also affect the heart etc.
Anywho, with the negative diagnosis, I figured most of my problems (migraines, fatigue, nausea, dizziness) were hormonal from Endometriosis and my joint pain was probably because my spine was funky. I didn't even think about my gastrointestinal issues because I thought everyone got sick when they used the bathroom (yep..no theory of mind..go Aspie brain of mine). It was many years later before my sister told me she never had bad stomach aches. I was shocked. Moving on... I had a doctor mention fibromyalgia but he acted like it was a fake disease, so I didn't even research it. I'm glad I left that doctor.
I remember the first time the costochondritis got really bad. I thought I was having a heart attack. I cried and it scared my friend. I had went to the ER before and was treated like a nut, so this time I just cried and endured. I knew it wasn't anxiety because I was well aware of how to stop a panic attack in it's tracks. Give me a pillow and some water and I'm good. This was different. The flare-ups would last for hours and sometimes days...years later it would last a week...weeks. Changes in the weather...the seasons...exercise...lifting heavy things...even stress could trigger it but mainly it was physiological. I did my own research because the docs didn't help. Only one even acknowledged the possibility of costochondritis but I didn't get a diagnosis then. So for years, I treated myself and prayed it was just costochondritis after all and not something worse. The monster didn't have a name still...just a list of ways to appease it. I rested. I used the heating pad. I cried. I waited til it went away. I began to dislike winter with a passion. I struggled to hike or visit the mountains. I felt like an elephant was sitting on my chest...sometimes a baby elephant and other times a fat mama elephant. I couldn't sing when it got bad. I couldn't walk much or breathe good. It hurt to breathe.
This was my 20s...my twenties! Not to mention that I had this in a lesser way during my youth. I'm 38 and just last year I was finally given a costochondritis diagnosis and treated for it. My condition is chronic (which is rare for costo.) but I believe it is caused by the Ehlers-Danlos (which I'll get to soon). It got so bad (after working on the farm), that I cried as the physical therapist worked on my chest. I could barely breathe and would cough because my lungs couldn't expand. I had to stay in bed awhile and take Prednizone. It of course has come back when the seasons change etc, but I know to take it easy when it happens. I don't take a pain pill and push through anymore. My physical therapist also taught me exercises to help it. Many researchers believe costo is actually caused because of the back. Low and behold, naming the monster gave me the right weapons to tame it. Who knew?!
Endometriosis wreaked havoc in my body but few seemed to care or acknowledge what it was doing to my iron levels, my hormones, and my overall health. Again, I had no advocate but myself and the Lord. I had to pay a very expensive specialist to address the growing endo that was just left inside me at my last laparoscopy. In my early 30's after two living children and then a miscarriage, I was given a hysterectomy and they found the endometriosis was indeed all over me, so everything was removed except my ovaries. They also found the reason for my constant bladder pain and spasms (since my 20's too). I have a bladder disease called interstitial cystitis. It feels like a constant UTI or being kicked over and over. Fluids (especially acidic ones) will cause my bladder to bleed inside. If I have too much fluids, it will spasm. And often an empty bladder or just a few drops will still feel like a full bladder. I always feel like I have to pee. I've gotten so used to it that now I ignore it and sometimes that causes accidents...yaaa. Again, I didn't know the name of this monster, so I kept getting confused at why I hurt in that area...was it endo flaring up? Was it my intestines? Heck, I didn't know! I took UTI tests constantly and drank cranberry juice to no avail. All along it was a weak bladder...like my weak uterus...like my weak everything else...almost like I had something wrong with my connective tissue...hmmm.
I remember blacking out a lot as a kid when my Mom cut my hair and I had to stand. I also remember feeling faint during marching band and praying that I wouldn't pass out. Walking was okay but standing was awful. I got tired in the shower and felt horrible after. I just thought I was a wimpy person. As an adult, I struggled to stand on stage, especially in leading roles. I had to ask to sit down a lot. I began getting faint and almost losing consciousness while driving. My Mom and I tried everything. She would take my blood pressure. I would buy a Coke and french fries to get me through. Bananas seemed to help a bit. But after my surgery and after we moved to higher elevation and colder weather and not to mention an apartment with stairs, I began to black out a lot. I passed out in the hall trying to fuss at my kids. I didn't realize that high blood pressure made it worse but I did know that I had to stay calm when I had spells. I had to pull over and call my husband to pick me up...cancel playdates. I began to get scared to drive. I had a traumatizing trip to the ER. My family convinced me to finally see the heart doctor. A friend had suggested a year before that my symptoms sounded like (POTS) a dysautonomia that was linked to the Ehlers-Danlos she had. I had considered getting tested but got busy and forgot. Once my symptoms made it scary to drive, I went to the cardiologist and got the tilt table test. I was diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome).
Basically, when I stand up or sit up but mainly stand, the change of posture causes my heart rate to skyrocket. The longer I stand the more it rises. This can cause me to black out or faint. Sometimes it just makes me dizzy or jittery. I seem like a very anxious person but it is all physiological....though my physical issues can cause anxiety which can make them worse. But anxiety is not the cause...it is simply position and I've found in my case, high blood pressure and changes in weather and elevation....pressure. Sometimes POTS will go into remission and I'll be find and other times it'll flare up and I struggle to walk straight. But one constant it that my heart rate is never constant. It is all over the place. I have a normal range of 60 to 150 (though it has went lower and higher before). I can wake up and walk to the bathroom and my heart rate jump to 130. My body always feels like it is running marathons, even when I sit down in my chair. So I'm often exhausted and it's hard to breathe. I asked the doctor, "So I'm not crazy?". "You're not crazy," she said. "But your hands are cold." Oh, yeah dysautonomia makes all the other autonomic functions messed up too...like sleep, temperature regulation, digestion, blood pressure, breathing, etc...so yes, I am often cold...or too hot. Go figure. And showers, especially hot showers, cause my blood to pool in my feet and make me very faint and drained. It was good to know that I'm not unhygienic..I just hate how showers make me feel and now I know the monster causing me to feel sick in the shower.
So dear ones we are caught up to where my last post left off...
After I talked to you, I went through a horrible time of withdrawal getting off Propranolol (which made me a zombie and caused my heart rate to go too low and then awful adrenaline waves when it tapered off at night...hence why I constantly felt like I was dying). Yeah, I got off that and then started telemedicine with a POTS clinic in Texas. I won't name it because I have mixed feelings about the experience. It was a lot of money but the medicines made me sicker. So I went through months of taking all kinds of medicine that I believed would be my miracle. It wasn't. Did I learn from the experience? Yes...and I was given the Beighton test for hypermobility. The doctor did not like diagnosing Ehlers-Danlos...she had unconventional views on it. But I passed the test and met all the criteria...but the monster's name wasn't validated, which made getting proper care hard.
But back to where I left off, I began to get intense squeezing pain in my head and I started having vision problems. The eye doc said my vision was fine but that I had fluid on my optic nerve. I was tested by a neurologist for a tumor and didn't have one. However, the Texas clinic found white spots and small vessels disease on my MRI and diagnosed me with idiopathic Intracranial Hypertension. I learned how pressure changes in my brain (brought on by weather, stress, inflammation etc) caused my vision problems and crippling headaches. When the pressure got better, then I would be fine. However, when it got bad, I could barely see. I learned about many things...vagus nerve issues causing constipation and malnutrition which led to a bad B12 deficiency which was causing me to have nerve problems at the time. I learned about the small vessels that would constrict and cause angina (fake heart attacks). This was separate from the costochondritis but I struggled to know what was what then. It all stemmed from hypermobility and bad genetics. Still, the doc would not give me the specific name. I knew it. I had seen the monster do similar things to my dad and I was getting eaten alive by it. But I couldn't point to the monster and say, "It's hypermobile EDS! Help!" Instead, people just had to wonder why I was mauled and bleeding all the time...hypothetically.
The medicines I was given backfired and I got sicker. I was told that I had to get sick before my body healed. It was a part of the process. But I noticed that my chest inflammation wasn't getting better with the inflammation supplements. My kidneys and nervous system were not doing well with the IIH meds. I was starting to have a tremor and other neurological issues. So I weaned myself off and got out of the program. After a year and a half of being on bad medicine (bad as in it was bad for me), I finally began to feel a lil normal...my normal at least. Still sick but not deathly sick. Despite the failure of the meds, I did get my B12 back to normal and I learned the cause of several of my problems. So I began to self-medicate again (natural things). I got new doctors and I finally saw a rheumatologist and I was diagnosed with Hypermobile Ehlers-Danlos Syndrome and fibromyalgia.
Finally, after 20 years! Finally, I could call the monster by it's name...the name I suspected all along. It didn't surprise me because I knew deep down. I saw it fight my dad. So I knew. But now everyone else knew. Now doctors didn't completely act like I was crazy. Now I could get the right kind of physical therapy.
But I was surprised...by my anger...my fear...and how much didn't change with a diagnosis. I was angry that it took so many years to get an accurate diagnosis. I was angry at the doctors who had treated me like a hypochondriac or tried to put me on anxiety meds...or a gazillion other meds for the wrong conditions. I was angry at the doc who told me it wasn't worth pursuing a diagnosis. I was angry at the doctor who denied my diagnosis because they didn't think it would help me in the long run. It wasn't their decision...no matter how they felt about their own diagnosis issues. I then got scared because it became very real and I prayed and assured myself that everyone experiences EDS differently and I would not die the way Daddy did. We were different people and had treated our bodies differently too. Once I went through all the emotions of relief and joy, anger, and fear...then sadness, I felt a bit numb. Yes, I had a name and a care plan, but I still hurt the same and felt sick the same. So I guess there was a bit of a letdown. Knowing the name of the monster didn't defeat the monster. I still had to learn to fight and I had already been fighting. But now I know EDS's weak spots. I can fight with the correct gear...well, with the scientific knowledge that is available.
I do not have a specific name for the angina. I was given the suggestion of Prinz Metal Angina by my rheumatologist, but I was told it's not easy to diagnose. I'm not sure I'll seek that monster's name. I've been dealing with the vessel constriction by taking Larginine (a vasodilator). It usually helps. The angina isn't as regular as the costochondritis or the POTS. The angina usually comes when there are big weather changes. It does make me nervous because sometimes when it happens in my chest, a vessel also constricts in my leg and head on the same side. I don't understand it yet and I'm too tired to chase every monster. Tired...I should say chronically fatigued...which the fibromyalgia explains..along with all the weird nerve stuff I get and probably some of my sleep problems. I now know that fibro is a real thing. I'm learning more each day.
I have digestive procedures and neurological appointments etc etc that I'm supposed to be doing but I've kind of taken a break from getting medical help ever since my amazing primary doctor left. It's hard for me to trust doctors, but I know I need to start back soon and at least have someone available. For now, I'm learning the ups and downs of my illnesses and I'm pushing through by God's grace. The last couple of years, I've gotten some semblance of my old life back but really it's a new life. I've went on hikes and I've played with my kids. I've learned to homestead and raise chickens and bees. I've also learned that I have limitations and I have to listen to my body. I'm not as careless. I'm working on it.
So dear one, I finally conclude with this: It may be exhausting to fight monsters and then have to beg the doctors to name them or try to get others to understand you're in a battle...but it really does help to know the names of your biggest monsters at least. A diagnosis won't change the fact that you've been fighting this whole time without the label. However, it will open doors for proper medical care and maybe those who love you most will realize you are struggling and they can educate themselves. I can attest to this, it definitely makes for a better ER experience. When my kid had to call 911, it helped the paramedics to have a list to read and medications to see...I was treated like a human being and not a hypochondriac. Also, not keeping my monsters a secret, opened up understanding in friends...the true ones. It has helped at church too. People know I'm not a flake but that I'm fighting some big monsters. So dear ones...expose those monsters! So others can help you fight...because you can't do it alone.
I praise God that I'm not alone. I have Jesus with me always and during those nights that the pain is too much and I struggle to breathe, I cry out to HIM. HE never leaves me. I pray you have Jesus as your comforter too. If you don't, all you have to do is:
ABC. A-admit to God you're a sinner and need a savior, B-believe in your Heart that Jesus died on the cross and rose from the grave to save you, and C-confess Jesus as your Lord.
"That if thou shalt confess with thy mouth the Lord Jesus, and shalt believe in thine heart that God hath raised him from the dead, thou shalt be saved." Romans 10:9
In Jesus' Arms,
Amber Dover