Another new year, I can only hope and pray that this new year will be a much better year for the whole world. A healthier year to the ones that are sick. A consolation and solace for the ones that are suffering, included are the children that are being abused and neglected.
It's been very long since my last entry. As much as I wanted to write it's been almost impossible. When I concentrate I tend to fall asleep and my eyes aren't just too sensitive to light but are very painful when I use them.
The past couple of years were horrific. There were instances where my head felt like spinning. At times it's going to explode, it felt like. Too difficult physically, financially and mentally. I wish the torture would just end. I feel tired.
Kevin, my partner of almost nine years went home to Santa Cruz when my son came back from the military. He is a Geophysicist with an MBA who was a very hard worker. He planned to retire early but at 52 couldn't work any longer and then he was diagnosed
with a nervous system disorder. He was a triathlete, a surfer and a hard core cyclist. Now he is disabled. For a while he would only communicate when he was feeling okey but now I know he's not doing well because he doesn't answer my emails anymore. He has become a recluse. It's very frustrating that I cannot do anything to help him. I wish to visit him but I cannot so I can only pray for him. On the other hand, it hasn't been easy being a Mom to my son that came back from the military. He is doing his best especially in school. But him having to deal with anxiety, depression, etc. is taking a toll on both of us. Sometimes there are days where I don't have anything left but then my faith keeps me going. These are
truly the most difficult years.
On a good note, I have cut down on all my medications. I took
3600 mg Gabapentin for about 14 years, now I'm down to 600
mg/3x day. For almost 15 yrs I was on two tablets of Ultram 3x per day, now I totally stopped. It was horrible the first night. I was in agony, but it got better the next. I was on 10.5 mg Baclofen 3x per day, now it's 10 mg once a day. For spasticity, I'm now using
peppermint oil as rub for anything spastic. It works great. I was on
20 mg Propanolol 3x a day, now twice a day. Two 20 mg Cymbalta once a day, now I only take one. I stopped taking Omeprazole. I'm going to try to cut down on all of my meds. After two months on whole foods plant based diet, I was able to cut down on my medicine and I lost most of the swelling in my body. I can now wear my old skinny clothes! I would still get a big tummy once in a while especially because I can't seem to drop the Cheetos,lol. With having Gastroparesis and neuropathy it is inevitable. The distended stomach will always be a part of me. I have no choice but to wear
comfortable clothing whenever I look pregnant.
I started degenerating in August of 2016 but it's hard for others to
believe because I look normal. I don't have visible atrophy. I have
atrophy in my right arm and thighs but it's insignificant. Although I
have a lot of pain in my right hand with constant swelling, there's no atrophy. I'm not blind albeit my eyes are sunken, like Enophthalmia. I use a lot of prescription eye drops. I constantly use ointment to get them to open. I just had punctal plugs or tear duct
plugs put in on the upper lid last December. The lower plugs were
placed about a year prior. They help a little with the dryness for a short duration. My eye doctor always has something for me to buy to help with the extreme dryness. I do appreciate her help but I don't buy them for many reasons, one they're not covered by insurance, when you're on a fixed income, you can't afford anything. Another reason, it may alleviate with the discomfort but it's not going to treat it and anything for the eyes are pricey. I used
to buy everything she tells me that can help but at this point I know
we can't change things. Except for the ointment because it helps
with the pain and so I can open my eyes! My eyelids are now
wrinkly including my forehead. It's funny, my Mom didn't even get wrinkly until she was 85. I feel so ugly especially having these
scarred and bumped lips. I have rashes in different parts of my
body that's been there for three-four years. I didn't quite understand
in the beginning why I have a permanent rash in the back of my right ear but I'll explain later. Both my upper arms are full of
rashes. All of these rashes would show up now and then prior to
2014 but would disappear after treatment although in 2014 they all
came out at the same time and stayed permanently. That was the
year I started to swell up also.
In order to explain something I have to go back almost 19 years ago. In June 1999, I was recovering from hysterectomy (an
unnecessary surgery), I felt this indescribable weird scary sensation
in my buttocks and lower back that travelled to my stomach. It
wasn't the first time that I felt it but this one was more pronounced.
When I tried to get up I couldn't move, not even a slight bending of
my legs. I waited for Bill, my ex-husband to get me out of bed. For days I could hardly walk. Ever since that incident I tried my best to avoid sleeping in supine position. Although at that time I had so
many unexplained symptoms and pain that felt like hell. I couldn't
stand and walk too long, couldn't sit. The nerves in the back of my legs felt like they were short or being stretched out, etc,etc. I'm sure I've mentioned that in my other entries. Since my right side is
worse than my left, I tried sleeping on my left side most of the
time. I know how miserable I become after sleeping in my back so
it made more sense for me to try and never sleep in supine.
So fast forward in 2016. Almost the end of August when one morning I scrubbed the floor with my left foot and my heart started
racing. I was frightened. My feet were cold as ice almost no feeling. I waited for my caregiver to come to give my feet a
massage because I couldn't get them warm under the heating pad.
She must be late, I thought, let me call her. But I can't locate my
phone. As I walked upstairs my heart started racing very fast. I wanted to stop but I have to look for the phone. So as I was looking for the phone my heart was racing faster and faster. I must've gone upstairs three times. But when I came down I could hardly breathe
I felt like I was going to pass out. My chest was painful and tight like I was going to have a heart attack. So I went outside and flagged down a guy driving and asked him to call 911 for me. He was so kind that he waited for the paramedics to arrive.
In the ambulance I was scared. I never felt so much pain and
tightness in my chest. I heard the attending medic tell the driver to
upgrade when I told him about it. I could feel the ambulance go
faster and I could hear the siren. Then the medic was talking to a
doctor asking him what to do with me because my BPM was at 180, blood pressure was 220/100. (I have autonomic dysreflexia) I was afraid for my life but I tried very hard to calm down and keep
my presence of mind. When the medic asked me where the pain was I told him it was in my chest at first. The next he asked where the pain was and told him it was in my back. He came to my aid and he said to look at him in the eye and started to give me instructions. I knew then I was in deep trouble. I thought of my son and said a quick prayer. I felt weird sensations, my chest area felt warm and very tight and he administered some kind of medicine that went under my tongue. After a few minutes gave me another. Then I felt my back opening up and I felt a relief. My God, another ordeal, I thought. Similar episodes happened many times between
August 2016 through April 2017. It was scary and I really did
prepare for my funeral during that time.
Come to find out I was really degenerating but since I slept on my left side for 19 years so only my left foot turned numb as opposed to if I had been sleeping on my back both my feet would have
turned numb and I'm pretty sure I would have been paralyzed from
compression of the nerve So my Chiari doctor said that I am
degenerating and that I have anxiety. But the last time that it
happened and I went to the ER at Mercy Hospital instead of UCDavis, the neurologist said there's nothing wrong with her heart, check her foot. They did an X-ray of my foot and they found a stress fracture on my left heel. All I know is that I had been walking on my heel because I couldn't put my foot on the ground. So I was given a walking shoe (very fashionable according to Regia, my friend, sarcastically of course) and I was told to rest my foot. Nothing new I thought, I've been doing that a long time and I'm so tired of it. I discovered that by using the walking shoe it allowed me to walk without my heart beat going crazy. I modified
the shoe to where I can wear it outside/inside the house. Knowing myself, it's not easy to tie me down in bed, I still did things. My son said even in my death bed I'd still be cleaning. (but my Chiari
doctor said people like me takes a long time to get paralyzed) I used the ugly walking shoe for a year and four months but it was
worth it because not only the fracture but the numbness on my left
foot got better and I can now wear normal shoes without my heart
complaining. It helped that I switched to sleeping on my right side which is my bad side and yes especially with Syringomyelia there's always a trade off. It is indeed a wretched disease. I knew I cannot continue to sleep on my left side because everything was stiff including my shoulder, chest, side of my head, side of my legs and
foot. My left ear constantly drips with fluid.
Though I'm thankful and happy that I made it until now. I don't know what my future is like but normally what I know is that most
people with Syringomyelia, when they start degenerating, within six months to a year they're paralyzed. Everyone tells me including
paramedics that had helped me over the years told me that avoiding sleeping in your back helps a lot. I'm very sure of that.
I had no choice but to switch to my right side in terms of sleeping and after about three and a half months my right leg became very
weak because I have sciatic nerve problem there, my right arm and
hand are very weak too, I had the problem since I was 9years old
due to C7 nerve root. The nerves and muscles on both sides of my neck are being destroyed or attacked right now. They're now very stiff and when I turn my neck they make this sound like they're going to snap or break. I feel like having a big knife on each side of my neck. It's extremely painful. On the other hand I'm now
loosing my hearing on my right ear. The right side of my head feels like it's cemented or like a big play dough stuck on my head but
inside my ear is like a cave with boulders sometimes bumping into each other, sometimes it feels like it's full of water. My PCP said there's water inside it. In the beginning I heard every noise coming from the street. Everything was magnified. Now the hole is closing but I can hear my heart beat so clearly in my right ear. It's like my heart has been placed inside. I am scheduled to see an Audiologist on the 26th of this month.
If I hadn't avoided compression of my back I'm sure I would have been paralyzed from the neck down, (C1,C2,C3) be on a respirator, tube fed and totally bed ridden. I can say this because it only takes one night of sleeping in my back at this point and I would experience all of these symptoms for almost a week that I have to avoid it at all costs. Even sitting reclined at the doctors office with
my back on the chair or riding in a car with my back compressed in the car seat. The next day it's almost impossible to breathe, my
throat feels closed it's hard to swallow my own saliva, my right leg
would get very stiff and both my feet will be so numb that you can't put them on the floor.
Earlier in my entry I mentioned about being excited about cutting down on my medication and believe me I truly was but when I
realized that feeling all this excruciating pain, numbness, weakness and difficulty swallowing, breathing, etc., all magnified is going to put me in depression and I don't like that at all. But now it's too late because I agreed with my doctor and because all clinics are cutting down on medications including those that really need the most,
now I can't get a refill. Now here I am more lying down days again. I have a lot of chest and arm pain because I just cooked a bunch of
food yesterday. Yes, believe me, I say I'm in pain but I do things anyway. I'm pretty hard headed and I hate myself for that but
I can't change it.
Another challenge for me right now is to find a primary doctor that can sympathize with me and know about my condition. My doctor
moved to San Francisco and I've been bouncing from one doctor to another lately. I'm sure a lot of Chiari/Syringomyelia sufferers are so familiar with this. My new PCP asked me, " Are you sure you're loosing your hearing because your ear canal just has water but it looks fine to me?" It brings me back to the days before mydiagnosis. My previous PCP said no one is worried about you getting paralyzed. I'm sure it's because I slept on my sides for 19 years but doctors don't realize I still have the symptoms. I still feel like I have been running away from paralysis especially the last 3
years. It's difficult enough to deal with the symptoms but it's even more difficult that none of the local doctor's don't take me seriously. It's very frustrating to have this invisible disease. It's hard
to find someone that can sympathize with you. I find it very sad.
Because Syringomyelia cannot paralyze my neck from the back, it has attacked the muscles and nerves on the side of my neck since I sleep on my sides. They're now very stiff and they make this cracking sound when I turn my neck. The skin on my upper chest
area is being stretched and my chest has no more sensation. The root of my arms or the whole area of the brachial plexus feels like it's being ripped out of my body including my arm pits. Whenever my upper back is compressed I have a hard time using my arm and when my lower back is compressed, I cannot put my feet on the ground.
I may have delayed paralysis but I'm sure that I cannot get away. I have all the symptoms. Not to be negative but just being realistic.
Syringomyelia is after me, it's not going to let me go.
