If you are just finding this, you can locate the previous posts in the series here.
In my 30’s things were pretty bad, at least I thought they were. However, it was the tip of the iceberg.
Sometime in my early 40’s I started having new symptoms. I was having days when I could not walk, my muscles just would not work. I had mornings where I was too weak to get myself out of bed. I couldn’t walk long enough to even grocery shop. I once had to be rescued and carried out of a store, because I couldn’t walk any longer. It was a tough time filled with many adjustments in my life to accommodate the illness.
I continued to go to the doctor, tell them what was happening, keep logs, take my prescribed medicine and such, but the doctors had no idea what was wrong with me. This is when things started to go really bad for me.
Before I continue, it’s important that you understand that I have had hundreds of tests and not counting emergency room doctors have seen 68 different doctors whilst trying to be well.
I was a mom, with a big family, 6 kids… I spent weeks in bed at a time. I couldn’t do the things I needed to do, such as, care for our home, kids & work. This is a very dark time for me, for many reasons.
One of the reasons this time is so dark, is because my general doctor at the time decided this MUST be a mental illness. He came to this conclusion only after accusing me of lying. So, I was seeing a psychiatrist he referred me to, who had me on so many drugs that I couldn’t even be trusted to manage and dispense them myself. My husband did this for me. I am still very foggy about this point in time, because of the drugs.
After literally years of seeing this psychiatrist and taking all the prescriptions, I knew I had to stop. I had now developed symptoms from the medicine, like Tardive Dyskinesia for example. I was basically a real life zombie.
However, my husband was trying so hard to take care of me that he would never be able to get behind the idea of stopping all the psych meds. So I stopped on my own, stepped down the ones I could and stopped those I couldn’t. The hardest part was detoxing while pretending to still be taking the medicine.
After about a month I was thinking more clearly, leaving the bed and was ready to tell my husband what I had done. He had noticed I was a lot better, but had credited it to a new psych drug the doctor had prescribed that I never actually took. To say the least he was shocked when I told him, but he supported my decision and we pressed forward to figure out what was wrong.
My husband took me to my doctor’s office, the same guy who sent me to the psychiatrist and had previously accused me of lying. This time I had an advocate! The doctor accused me again or faking, lying etc. My angel advocate stood up for me and asked how lying or faking can cause someone to cry out in pain while sleeping. The doctor was irritated, but sent me to a new rheumatologist.
There is a relative pattern I have experienced with doctors during my journey… It goes like this:
- Early visits the new doctor tells me how much better he/she is than the old doctor, promises they will get to the bottom of this and help me.
- After testing, medicines and others stabs at the issue they become frustrated. I have had 2 separate doctors angrily walk out on me and one even went as far as to tell me it was MY FAULT that he couldn’t figure it out.
- Then the visits become strained, they don’t trust me, think I am lying etc.
- New doctor… Again.
I stumbled through my 40’s taking steroids, anti-inflammatories, getting shots and more tests & doctors than you can imagine. In this timeframe I was misdiagnosed with a few things also, such as MS, Rheumatoid Arthritis, blood cancer and more. I have had tests done that most people never hear about in their lifetime… They even did a bone marrow biopsy in my hip. All for nothing… I was going broke with co-pays, but I thank God I had insurance.
During this time I was still experiencing severe muscle pain & weakness, eye issues and other previous symptoms. This is also the timeframe when the symptoms became life altering. It was not about making accommodations any more, my life changed.
I had learned to “live with” most of my symptoms and even though the pain was terrible, I learned to live with most of it. I had been in pain so long that I had a “bar”. Basically, if the pain was my normal pain, I could function, but when I was having a “flare up”, it was debilitating.
During this time I was prescribed 800mg of Gabapentin 3 times a day. Trust me that’s a lot. I stopped taking the Gabapentin this year. I tried other things to manage my pain, some worked better than others. Nothing could make my pain go away and unfortunately, the better it worked the harder the crash. This refers to that “bar” I mentioned. So if my pain is an 8 and I am managing it, take the Gabapentin and for 3 hours or so it drops to a 4 I’m practically euphoric. This phase ends badly with a crash, every time.
Recently, during the last 8 years I have also watched my youngest daughter suffer. It’s like rolling back my life’s movie. I decided that no matter what I had to figure this out for her. I even had a paper drawn up requiring an autopsy if I died, in a last ditch effort to help her.
Then, during COVID I spent some of the money the government sent to have 100% of my DNA sequenced. Now, this is not an ancestry test, this is 100% of my DNA. I used a company called Nebula Genomics Inc. The real value, aside from sequencing 100% of my DNA is that they have pretty capable tools.
The most important tool for me is the Nebula Library.
The Nebula Research Library is a collection of research studies that have been curated by the scientists at Nebula Genomics. With the Nebula Research Library, you will be able to stay up to date with the latest research in human genomics and learn how it applies to you. You can explore the current content of the Nebula Research Library on our blog.
Nebula Genomics
I am not paid at all by Nebula Genomics, but I genuinely have benefitted from their services and they deserve the recognition.
So, armed with new information I began the research to narrow down my condition and hopefully figure it out.
Stop back to read my next post in this series Living Without Diagnosis.