Up to date 2016


Its been a while since I darkened my blogs door way. Its been a long tiring, depressing & painful time. I had back surgery on disks L4-5 & L5-S1  as the disks were leaking quite a lot and the Sciatic pain from the drainage was unbearable.

Finally, after a lot  of rigamarow they did surgery on 08/04/2015 through the front. Since, I am a rather large woman I was in so much pain they had to transfer me to a rehab facility for ten days. As the Headache & Pain center’s hospital is not equipped for more than a day or twos stay.

Then after a lot of continued pain they put a cage around my spine by operating through the back this time on 08/31/15. After another stay at the rehab hospital for a week I was finally able to go home. Unfortunately, because of my size my back got all puffy and would drain small amounts of dark red blood or clear fluid.

One day about two weeks after surgery as I was to cleaning my back wound area with a q-tip & a water & peroxide mix like I was told one of the lower areas on my incision the q-tip went into my back and a Huge amount of fluid and dark blood ran out of my back and totally soiled and saturated my bed. I quickly grabbed a chuck and put it down behind me and another against my back .

As I pushed to put pressure my back to stop the on slot of fluid the rest of my incision opened up and showered me and both chuck’s with bloody fluid it was a mess I dare say. After the on slot slowed to a slow trickle I was able to get up and with my mom’s help get myself cleaned up.

The good news is after the built up fluid was gone I felt so much better. Good thing we had some bandages left from the hospital. My Mom & I estimated that I lost over 2 cups of fluid if not more. As it saturated two chucks 1/3rd of my bed, me my nightgown and a big heap of Kleenex

It took a long while for the wound to close and stay closed because of the constant build-up of fluid. But finally by January 2016 it closed for the final time.

It took me quite a while to get back on my feet after the surgery. However, by April 2016 I was feeling much better. On the downside I did end up with a small amount of nerve damage in my left thigh, ankle and foot/toes. Over time it got better but the damage to the nerves to my toes was affected the most and they still scream in pain from time to time. Mostly its hard to wear a shoe on that foot.

Then wouldn’t you know when I went back to the HA & pain Doctors to check out the results from my neck MRI.(I was having a lot of shoulder & neck  pain). I found out quite quickly that I had a disk in my neck that was pushing into my spinal cord causing me to lose balance to the side. I just thought I was clumsy. The doctor told me that I was in an emergency situation & had to have neck surgery asap or I could be paralyzed. So it was just under a week since I heard the news that I was under the knife again.

Thanks be to God I made it through without an issue. The site healed nicely with no problems and I was able to go home after only one night in the hospital.

So you can see why I have been too busy and in too much pain to write. Now After struggling to no avail for decades I am looking into weight loss surgery to relieve pressure on my back and help with my diabetes. Otherwise, I will just be having one surgery after another till I die.

I Know God will be with me no matter what happens and that gives me strength.

 

 

Ever stood in front of the microwave and forgot why you were standing there??


For that matter have you ever opened the fridge door and forgot why you opened it? I have, matter of fact I have closed the fridge door or left from in front of the microwave depending on which one I was doing; and then gone back to my bedroom or wherever I was prior to the microwave or fridge and then I will remember why I was at the microwave or why I had opened the fridge. At times like these I feel like a real idiot! However, the worst is when I am in the middle of something and get distracted and then end up doing something else only to be distracted again by the cat or my mom and start something else. Then later I will notice 2-3 things half done and have to finish them (hopefully before I get distracted again).

Past Examples of things I have left undone would be:

  • turning the washer on and forgetting to put detergent or, softener in and/or leaving the lid up
  • leaving the fridge door open
  • leaving the dishes half done
  • leaving drawers or cabinets open

By now I am sure you are thinking I must be a little senile. My mom says I remind her of an absent-minded professor; because I don’t see the forest for the trees. Unfortunately, I see and hear way to much. My mind just processes things different. You see I believe I have Asperger’s Autism. If you know anything about autism you know that we are overwhelmed a lot by our environment. Me, well I get distracted by all the input. I can be talking about something very serious then see a butterfly or a flower and then I am looking at the butterfly or smelling the flowers and the person I was talking to is left hanging. You have to be quite patient when you are around me.

Since I turned forty, (seven years ago) I also noted a decline in my memory. So, I have to write everything down now. Problem is when I lose where I put the piece of paper! Ha Ha! I try to keep my room organized and everything in its place so, this does not happen but, a lot of the time life or, pain gets in the way. I now have a Calendar that I write all my appointments and important things I have to do on. This helps a lot.

Even with all the bad there are still some good things I have gotten from having autism. I have a heightened sense of smell that tells me when the litter box needs changed, when food is done, and when I need to bathe. I enjoy flowers and outdoors more because of my sense of smell. I also have a strong sense of textures. This can be good and bad. Especially with food, I cannot stand certain food textures. However, I love soft fur,  clothes and blankets. No wool for me or anything that is scratchy. Which also means there are no tags on any of my clothes.

Now you know you are not alone when it comes to being forgetful or needing everything to be in a certain order!

Living with Asperger’s Autism


I was born in September of 1966. Back in those days people had no clue what Asperger’s was. If you were dysfunctional or acted strange you were put in an institution. I have to give my mom a lot of credit here because she never did that to me. When I would have flunked kindergarten my mom convinced the teacher to pass me. My mom and grandmother thought it was because I four years old when I started kindergarten not turning five till the end of September. The truth of the matter was kindergarten had been way too overwhelming for me. I wasn’t used to so much noise, and the lights were way to bright! Nap time was another challenge; by the time we were supposed to lie down I was too keyed up from all the input and would either cry or throw a royal fit. Normally, I was quiet and withdrawn preferring to escape inside my head then deal with school and everyone in it. I don’t remember a lot of my early childhood but I do remember I had no social skills to draw from and my mom was told I was retarded by my kindergarten teacher. But you know I wasn’t and am not retarded. At the tender age of five I could already read a newspaper out loud to my grandmother. I knew my colors and how to count but it took me till I was in third grade to learn the alphabet.
In first, second, third, and fourth grades I had sessions with therapists and tutors sometimes twice a week other times every day. During some of these sessions there were toys piled high on a table in the room and the therapist would watch me play. In other sessions they would just talk to me. In 4th grade my therapy visits were eliminated when I went to the first visit that year and looked at the psychiatrist who was there to evaluate me with another table filled high with toys and said “You want me to play with these toys so you can watch me and see if you can determine what type of therapy I need.” By then I was tired of being evaluated all the time when I played and tired of having to see a therapist. I told the Psychiatrist that I needed a tutor to help me catch up with the other kids; not see a therapist who only further alienated me from the other kids. The psychiatrist said I was fine after that. He also said I was a lot smarter than the teacher’s thought and I was not retarded. I remained in tutoring until the beginning of fifth grade at which time I was caught up with my peers.
My difficulty in school was always related to how I related to things or how I interacted with other children. For the most part I found other children mean. I went through a lot of bullying too, which made k-6 years almost unbearable. By high school I learned to mimic other kids and how they socialized so I did much better.
When I look back on my life and then think about my life now I realize I still suffer from a lot of Asperger’s related issues.
1. Hypersensitivity to noise: (in high school this diminished now a days it’s back with a vengeance) I like quiet and soft light; it bothers me if it is too bright outside.
2. Hypersensitivity to sensations: If I am hot I am extremely hot to the point of getting very fidgety, if I am cold I am freezing. I cannot nor have I ever been able to tolerate tags in my clothes and clothes have to be washed sometimes three times before they are comfortable to me. Certain smells bother me and there are certain foods I cannot eat because of the texture and the texture I can’t tolerate can change on me.
3. Routine: I need a least a day or two to prepare myself for changes and when I work I must have a certain routine to keep my stress level down. I also have to have a certain amount of down time between being at work and not being at work or I panic.
4. Obsessions: I get obsessed easily for instance I watched extreme couponing once and ended up getting a notebook, and dividers and I would go to the recycling centers and collect grocery sacks full of coupons and that’s all I would do from the time I got up to the time I went to bed. The same with scrapbooking. Its like I go through these extreme phases where I eat , breathe and sleep whatever I am obsessed with at the time.
5. Poor social skills: though my social skills have gotten better and I have learned to recognize some facial expressions I still will ask someone if they are mad at me because I read their facial expression wrong. This drives my mom crazy at times. Used to drive my best friend nuts. In-addition I tend to talk before I think and I tend to tell everyone my life story even if I just met them. I also tend to answer a question literally I have no buffers. For instance one of the things that got me into trouble at my last job was because I had an elderly client ask me what the scar on my left forearm was from. Instead of making up something or hedging the question. I told her the truth, that I had tried to commit suicide 20 years ago. I didn’t go into detail that’s all I said but this caused the patient to request another nurse because she was afraid I would get upset and try to commit suicide in her house. Which to me is a really weird reaction as I had never done anything to make her think that and she always requested me prior to that.

Even with all the adversity I have had through my life I keep plugging away. One thing that has helped is my writing whether it be journaling or writing stories it’s the one way I have been able to connect with people without feeling at a disadvantage.

Bittersweet 2013


Bittersweet memories of 2013

1. In 2013 my sweet cat Tigger died at the age of 15.

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09/1998 to 07/01/2013  My sweet tigger may he rest in peace!

2. A Kitten named Sammy (AKA the Tasmanian Devil) came into my life.

057Sammy the Tasmanian Devil 🙂

3. My second niece arrived Allison Frances.

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Allison Frances 05/18/2013

4. My first grandchild was born. (she’s the one on the right. Haha)

Jimmy and Devlin

Devlin Frances and my son Jimmy

5. My mom was hospitalized with heart and lung issues in November. We (my sister and I) found out my mom needs to have aortic valve replacement surgery when her lungs are strong enough. 😦 Shes better now but, the cardiologist says she is a ticking time bomb because of the valve being bad. Update: Mom had her valve replacement 04/2014.

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Mom with her dog Missy on Christmas eve.

6. I lost 45 pounds (Yeah!)

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Before 12/2012 (Ick what a terrible look!)

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During 08/2013

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After 12/2013 I Plan to lose another 50 pounds in 2014 (I am praying)

7. A little birdy told me grandchild number 2 may be on the way in 2014! It is supposed to be a secret so no pics. Shhhh! Don’t tell anyone! lol.

In conclusion, 2013 brought good, bad and downright frightening times; but we persevered and made it through another year!

Looking Through the Window


Looking Through the Window

I look through the window and see all the dreams that have yet come to pass…

All the hopes I have…

I look around I see ambivalence…

The indifferent veneer covering people’s despair…

I look in the mirror…

I see the years that have gone by…

The innocence fading from my eyes…

The mistakes I’ve made…

I see the tears I’ve cried and those to come…

In my sleep come the nightmares…

I look at my children and I feel so much love…

I am certainly blessed from God above…

Yet, I yearn for a future where my body is not broken…

And there is no pain…

Looking through the window…

I am older…

wiser…

And perhaps happier…

but still in pain…

2012 Living with Chronic Pain Part II


The worst part of living with chronic pain is never being without pain. Pain is my ever faithful companion. At its worst it is like a white-hot pain that envelopes your whole being preventing you from focusing and keeping you from letting others near. Right now my most persistent pain is coming from the middle of my back, right hip and leg. Then lately my stomach and liver have been putting their two cents in making the pain even worse.

For those without pain I imagine it is difficult to fathom how chronic pain can consume your whole life.  Imagine someone putting their fist in the middle of your back and pushing till you are nauseated from the pain,  then imagine you have  a gorilla sitting on your shoulders making you feel like your spine is being condensed like an accordion when its closed. Now further imagine that there is nothing you can do or say to stop the pain they are causing. Changing positions, sitting, standing, stretching, walking, exercising or, lying down, nothing helps. This is what I feel like right now. Which is why I will be blogging once today.

I am not on pain patches, or morphine. I am allowed to take Ultram four times a day.  My pain right now is an 8. I have an appointment 07/17/12 just to see a general practitioner who will have refer me to a pain clinic. It is going to be a long hot, and painful summer. Hope anyone else who is in pain has better luck and better pain control. Any hints are welcome. So far I use aspercream rub it works the best for me out of all the pain relief creams; in addition to the before mentioned medications.

 

HOPE YOUR LIFE IS FILLED WITH FAITH AND IS PAIN FREE

Living with Chronic pain I


Living with chronic pain can make the simplest things seem insurmountable. I have lived with pain for over 30 years. My first memory of recurring pain was in fifth grade when I woke up with the worst headache I had ever had, my eyes were red and puffy and my sinus hurt terribly, not realizing my sinus pain and pressure was going to get worse I went to school and spent most of it in the nursing office with a wet cloth over my eyes and sinus. This sinus issue lasted three days then I was fine. But from then on I suffered from minor HA’s which evolved into full-fledge migraines in my late teens to early twenties. When I was 12 I started to have severe monthly pain lasting for 1-3 days every time I would menstruate. I used to tell people it felt like someone was wringing out my uterus and vaginal area. When I was around 14 or 15 I started experiencing back pain so much so that I had my little sister walk on my back. (probably not a good idea in hind-site) The back pain would come and go.

When I was 18 I had my first child Elizabeth. The nurses said my periods should not be as painful since I had given birth. They were wrong (My period pain was more severe than before and lasted from 2-4 days) Carrying my daughter around caused my back pain to become more severe. It was during this time I was introduced to a chiropractor friend of the kids dad who would adjust our back weekly. After I had my daughter I also started having leg cramps and heart palpitations and chest pain. I have a heart murmur so the cardiologist checked out the reason for the heart murmur and decided it was just a sound of no consequence, and the heart palpitations and chest pain were put off as gas.

I was 16 when I first started having difficulty getting up in the am feeling kind of achy. I am forty-five now and wish I could trade my morning troubles for back then. By nature I am an afternoon /evening type individual. If I have to get up early it adds about an hour-or two to my already painful get-up ritual. It takes me and hour to get up out of bed and get my barring and another hour to get dressed and ready to go someplace. If I am staying home it is easier because my own biological clock will wake me up and pain won’t be as bad hopefully (but this is not always the case). What helps me to be able to get out of bed with less pain and discomfort is taking my medicine 1-1/2 -2 hours before getting up. When I used to work I would have to get up at 6:30am and it would take me till 10am to get ready and out of the house because of the severity of pain I was in. I tried working nights several times but it really throws off my mental balance and I start hallucinating, making rash decision, making lots of mistakes.

In 1997 I was working the night shift in a locked Alzheimer’s unit and I had a psychotic break and disassociated for a large portion of my shift.  I believe that I got roughed up by some of the patients and I also hurt my back, neck, shoulders, and hips from the tremendous amount of back-breaking work I was supposed to do. Strips beds and remake them. Give baths to 15 of the 17 patients on the unit. A lot of lifting and bending .  By the time my shift was over I was a mess the ward was a mess and I was practically catatonic. Ended up being diagnosed with fibromyalgia, arthritis, neck strain, bilateral shoulder strains, and back pain.

Because of the above trauma I developed PTSD, DID, Depression increased, and anxiety. It was during this time that I picked up 90lbs of fat on my frame. In 2001 I was first diagnosed with diabetes II diet controlled. Since 2006 I have been taking metformin and since 2010 I started having giving myself a nightly shot of lantus.

In 1995, 2001, and 2008 I was in involved in MVA where my previous injuries were exasperated. By my last accident in 2008 my back had developed several small bulging disks and a herniated disk as well as osteoarthritis of my hips and knees.

The only thing that has kept me going thru all this has been my faith in Jesus Christ, GOD and christian radio, and my affectionate and my faithful companion Tigger and my mom and sister and my kids.