Tag: chronic illness

PTSD is flaring

by Midnight Demon, posted in cauda equina syndrome

I took a fall last week, on my birthday. I didn’t think I did anything as I landed mostly on my butt and hip on the stairs. I just pretty much collapsed on the steps. Today my back is hurting and my left leg feels week. Also my thigh is twitching. All indicates that something happened. I don’t really want to have another MRI as the last one sucked but it’s the only way to know if I did something to my back. I am hoping it clears up by tomorrow because I really don’t want to end up in the ER on New Year’s eve. All of this worry and anxiety has flared up my PTSD symptoms with flashbacks of my second diagnosis. I keep hearing my surgeon tell me has never seen a disc fragment so big and that he has no clue how I was able to walk as my nerves were so compressed. I still don’t know how I was able to do it. I was working two jobs at the time and moving stuff in the lab as we had a freezer go down. It was a nightmare. Plus we had two interns from Mexico come to help out the lab and I was no good to either of them because I had to have surgery a month into their arrival. All of these memories keep flooding my brain. I really think I reherniated my L2/L3 disc again. It would account for my symptoms. What a way to ring in the New Year with potential surgery. I will be screwed and most likely permanently disabled if this happens.

To say I am scared is an understatement. I keep moving my foot and toes to reassure myself that things still work. I haven’t done any leg raises because that is hard to do with the laptop on you, LOL. I will do them when I get off. If I didn’t have thigh pain, I probably wouldn’t be worried but that is how everything started with my second go round in the operating room. The surgeon missed a fragment his first go round with my nerves and my left leg became fuzzy and then weak and then non-functioning all within three days time. So now I am at the fuzzy stage and I am freaking out!!

This is what I have to live through and I swear if it is CES again, I am not going to live through it. I will kill myself because I would rather die than be permanently disabled. I will have to have a fusion done to stabilize my spine and I have had too many people have them done and something go wrong. They never recovered and never was able to return to work. I don’t want that to happen to me. I know I am not working now but why should I go through the agony of losing what I regained again to being worse than what I am now. Totally not going to happen. I am too smart to let them talk me into a fusion. I just won’t. I rather be dead.

Midday Blog

by Midnight Demon, posted in blogging

There is Freezing rain outside today. I have decided not to go out. I got a few birthday messages, still have not gotten one from my therapist. I am sure she is just busy with her little one and will when she gets a chance.

For privacy reasons, I do not display my birthday like other folks do. I sometimes find it annoying to get birthday messages from people that I hardly talk to any other time of the year. Sometimes a day or two before I will display it. Not this year. I really don’t feel like dealing with messages as today is depressing me enough. My father called me around eleven and sung me an offtune Happy birthday. He didn’t sing it right but the sentiment was there. I asked him if I was going to see him tonight (see night blog when it is posted).

I have decided that I am going to write three blogs today. I have been really bored since my writing stopped so might as well do something special for my birthday. I wrote my first blog when I first woke up at 1 am (0100, morning blog). The middle one is now and then the night time will be later after my birthday party, which I hope goes well and doesn’t last too long.

Rain is causing my back to hurt so I guess it is good that I didn’t go out today. My writing friend got back to me and looks like I will have to make indents to my book. I wrote the book like I do my blogs without indentations. OOPS. Now that should take me a couple of hours at least. I won’t do it today. Maybe tomorrow while I know I will have the house to myself and I can order Thai food. That is my Christmas and birthday present to me. It will be the only time I will be able to order food as my finances are going to be low this month. I messed up my checking account and because I am short, I am also short this month. Now I have to decide which to pay, cable or cell phone bill. It sucks living on disability. I wish I could be able to work but if I did, I doubt I would have time to write.

I am excited that I have another book to do. This one is going to take some crafting as it is going to be from our memories from a year ago. It will be based on blogs, journal entries, emails, and memories of our events as we saw them. It is going to be an intense book. My writer friend and I are going to be sifting through this during the new year and write monthly about it. I hope that it is more than a few paragraphs!

And I have a confession to make: I have been avoiding the dentist like a plague all year long. I have to see them because my teeth are starting to hurt and I think I have a loose filling in one of them. I saw the number on my phone today (I looked up to see if the number was still in my contacts) but that was as far as I went. I am just a chicken when it comes to the dentist. I hate the scraping and I know after almost three years of not going regularly, there is going to be some scraping! Plus I don’t brush my teeth on a regular basis so that doesn’t help either. I am surprised my teeth haven’t fallen out yet. But I will call the day after Christmas. Maybe they will have an opening next week or something. I had a good dentist but he was in NH, a long ride for me without a car. I thought I would be able to keep them as I would have the research job and therefore have a car no matter what. Well that turned out to be false. I really miss my research job. I miss the independency of working alone to get a job done.

Well that is all for now.

about CRPS

by Midnight Demon, posted in chronic physical pain

Very interesting article I found from the Facebook page about CRPS

The lack of awareness about Complex Regional Pain Syndrome has led to many myths. These myths can hurt the perception of CRPS that other people have. Here are seven myths about CRPS and the facts to dispel them.

Myth #1: CRPS is a rare/new disorder.

Fact: CRPS has been around for approximately 145 years. Doctor Silas Mitchell Weir and his collegues first wrote about CRPS during the Civil War. Some of the names it has been known by are: Causalgia, Post-traumatic Dystrophy, Shoulder-hand Syndrome and Reflex Sympathetic Dystrophy. In 1995 the International Association for the Study of Pain(IASP)felt Reflex Sympathetic Dystrophy did not adequately represent the whole of the disorder. They changed the name to Complex Regional Pain Syndrome.

Myth #2: CRPS does not spread.

Fact: In 70% of the cases of CRPS, it spread from the original location. It can affect any part of the body, including internal organs.

Myth #3: CRPS will go away in six month, a year, or 2 years.

Fact: Once you have CRPS, you have it for life. There is no cure and at this time, the treatments for this chronic condition do not work for everyone. If you are one of the lucky ones who go into remission, it can come back if there is another injury or for no reason at all.

Myth #4: Opioids do not help the pain of CRPS.

Fact: Using opioid medications can be very effective in lowering the pain level. They are used to help control the pain level in order to allow the patient to go to physical therapy. They also allow a patient to have a somewhat normal life. Without them, most patients would not be able to move or participate in daily life.

Myth #5: CRPS is a psychiatric disorder.

Fact: The pain is very real, as are the symptoms associated with it. No one can see the pain, but there are physical signs such as, color changes of the skin, loss of hair, and osteoporosis. Sometimes atrophy or contracture of the limb is also present. This myth is widespread among medical professionals.

Myth #6: Minor injuries do not cause CRPS, only major ones do.

Fact: The number one cause of CRPS is a minor injury or surgery. A sprain or broken bone are often the reasons heard when asking, “How did you get CRPS?” Minor surgery is a common reason as well. Surgeries for carpal tunnel, or to remove a neuroma from the foot.

Myth #7: If you don not get pain relief from a sympathetic nerve block you do not have CRPS.

Fact: Getting no pain relief from a block only means the pain is SIP, Sympathetically Independent Pain. Patients who get pain relief from a block have SMP, Sympathetically Maintained Pain. A series of blocks may be successful in putting CRPS into remission. It also may result in longer periods of relief with each block. This myth has caused delayed treatment for many people. — atSurviving CRPS & Chronic Pain, Our Personal Journeys.

it sucks living with CES

by Midnight Demon, posted in blogging, cauda equina syndrome, chronic physical pain, depression

I still have been in a weird mood. I don’t know why. Seems so weird that last week I was in the depths of a suicidal depression and this week I am the complete opposite. I am not manic or anything because I am eating and sleeping at least 6 hours. I keep waiting for the shoe to drop. I am a little more depressed today than I was yesterday though so maybe I am going back to my normal depressed self.

I editing my book today and I just felt sad about it. People are going to be reading about my condition called Cauda Equina Syndrome (CES) and know about my difficulties going to the bathroom and my issues with taking a shower. I know I shouldn’t really put it out there but my book is compiled of my blogs. SO the words are out there. I have not gotten any criticisms or negativity on my blog. But I don’t know if my book will make the headlines or anything. It will be the first book that I know of dealing with CES and what it is like living with this condition. The thing is people need to be aware of this condition because it can happen to anyone. It doesn’t discriminate. I am no medical professional but trust me you wouldn’t want this condition to happen to you. It sucks living with CES. You have medical professionals that don’t care after you have had surgery about the nerve pain or the nerve damage that leads to possibly another chronic pain condition known as CRPS (Complex Regional Pain Syndrome). You get this condition and you are pretty much in pain for the rest of your life. I have the milder form of the condition so I am not in a 10+ pain every day but there are days when I do nothing and it flares up. Lately I have been ok with pain so maybe that is why my mood has shifted. But while I was walking home tonight, I got within the corner of my block and my foot acted up. It was killing me by the time I got home. It feels ok now that I have it up and I am laying down in bed. Thank god for laptops.

Not only do medical professionals deny that you have damage, but they also forget when you remind them the next appointment. I go through this every month I see my primary care doctor. It is like I am seeing him for the first time for my ankle pain, every single month! I get so frustrated. And now he thinks he found the cure by having a cortisone injection. I don’t want an injection. I don’t believe in them and I believe they can cause more harm than good, especially to joints. Plus, it isn’t an exact science. There is only a 50/50 chance it will work. Why should I go through the pain of having needles stuck in me for a 50/50 chance? No thank you! I don’t like those odds. Just like I didn’t like them for my back problem. Sometimes it works for people, but with my luck, I will be the 50% that it won’t work. And I am NOT going to be the one to say yea I will have it done JUST to have it done. Again, No Thank you! My body, my rules. I am not going to have anyone dictate what should be done with it. Pain medication is working for me so why not stick with that? I know that eventually the pain meds will stop working for me or I will have a dependence on them but as long as my doctor prescribes them, my life is manageable. And isn’t that the important thing?