Nerve Pain…

I talk often about the other forms of pain I have in my spine, my knees, neck, and migraines, but I haven’t talked much about my diabetic nerve pain. I have it in both of my feet and both thighs and it feels very different in my feet than it does in my thighs.

Most people understand that it means that the nerves are dying and they are, however they do not go quietly by any means and I am happy when a section goes completely numb because it is one less area to hurt. My toes feel like they are being shocked at times other times they feel like they are ice cold, but when I feel they are warm. The tops of my feet burn like someone is putting out a big fat cigar on my foot over and over. The bottoms of my feet just under my toes back to about mid foot is pretty much numb except deep into my foot, but it has to be a really hard press for me to feel it.

My thighs from just below my hip to my knee on the outer part of my thighs feels like someone is pouring boiling water down them and I cannot stand for them to be touched because it sets the pain off. There are times when it just happens and it sucks because I have to resist the urge to rub it because that will just make it worse. Also none of it has ever went numb like parts of my feet have and I am not sure if that is because it is relatively new or because of the nerve pain medication I take called Lyrica which I now take the maximum dose of 400mg at bedtime so if it stops working I am not sure where it go to from here.

One thing is for certain nerves do not go down quickly or quietly.

Comments always welcome be nice and no foul language. God Bless!

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Neck Injection Ugh!!!

Well the swelling has all went down and the pain on the left side of my neck decreased which tells me it was the pressure from the swelling that caused it to hurt. The bad news is the pain on the right side has increased and so has the pain between my shoulder blades. This is getting so old and tiresome, but I know my doctor is doing the best that he can.

The problem is my insurance and the fact that you have non-medical people making decisions about medical things. So they tell my doctor that so many nerve blocks have to fail before I can get the radio frequency ablation ( which is burning the nerves with high frequency radio waves) this kills the nerves for up to a year at a time which means less pain for me.  My doctor is also in the process of trying to get them to approve the same thing for both sides of my lower back which was done over a year ago so now it is a waiting game.

I go back to see my doctor on the 31st and hopefully he says I don’t have to have another nerve block because I feel it has been proven they are not going to work and it is getting more painful with each injection so it is also questionable as to how much more pain I can take so please pray this is the last one.

Comments welcome please be respectful no foul language please. God Bless you all!

Update on New Med and Neck Injection…

First thing the new pain med it has been about six days since I started taking it and I have to say I am impressed with it. It deals with my pain without my head feeling like it is in a fog. I am way more alert and don’t have the desire to sleep all the time and I have so much more energy way more than I have had in the past two years for sure. So I feel I made the right choice for myself and the fact that my doctor was supportive was really great, but I felt he would be because he is one of the best doctors I have ever had.

Now to the neck injection I am still in considerable pain at times which concerns me and now it hurts on both sides of my neck and that worries me as well. The swelling is considerably more than the other three times. Hopefully when the swelling goes down the pain will stop because right now when I am sitting up my head feels to heavy for my neck I know that is a weird description, but that is what it feels like lol.  So basically the jury is still out on the neck injection. I will update again once the swelling goes away please pray this works because I am really tired of being in so much pain I have a literal pain in the neck.

Comments are always welcome please be polite and no foul language! God Bless you all!

So There Have Been Some Changes…

Recently I made the choice I no longer wanted to really strong opiate that I had been taking for almost six years and so a week before this months appointment with my pain doctor I detoxed myself. I researched things I could do to make it a little easier which really did help more than I thought it would. The first two days were the worst and some of the symptoms of withdrawl are sneezing fits sneezing really hard up five or six times in a row so in comes Benadryl which really helped, then there is diarrhea which for me was one of the very worst so I bought Imodium and that medicine is so awesome, severe leg pain this was also one of the worst so I used Tylenol Arthritis which kept it from being totally unbearable, and profuse sweating which a fan helps to keep cool.

My doctor was very understanding about me wanting off the strong opiate I told him I felt it was making my quality of life worse instead of better, my mind was always in a fog and that I had stopped doing a lot of the things I love because I just couldn’t concentrate on anything, and I just came to hate how it makes me feel. He was impressed I detoxed myself in a week, but I told him I don’t a strong addictive personality and the only thing I have ever been strong addicted to is nicotine and he told me that is genetic. I no longer smoke, but I do vape which is better than a cigarette any day.

Now I am still on an opiate that will never change because I suffer a lot of pain otherwise that is way to much to deal with. The one he put me on yesterday is a schedule IIII which means it has a very low chance of dependency or addiction in user. Plus I can split it up into six doses in case I have break through pain or I can take two pills three times a day. So far it is working really well much better than I expected.

Friday I go for another neck injection and really hope it works this time since the last three haven’t worked at all. Hopefully this time it is the radio frequency ablation (which burning the nerve or nerves causing the pain.) because it will do the most good. Still waiting for approval from insurance to have the same done to my lower back it has been over a year since I had that done and I can tell it is definitely time again.

That is all for this entry God Bless you all!

The Pain of Being in Pain…

I think sometimes my body is sadistic because it is not bad enough that I am in pain 24/7 every now and then it decides I need to be in more pain and for no apparent reason. For the past two days I have been having wicked muscle spasms from the base of my neck to just above my tailbone and my muscle relaxers and pain medication was barely working. I must admit those forty-eight hours were pretty rough and there were a few tears over it. For me it was just another reminder that no matter how bad I feel on a daily basis it can definitely be much worse.

Luckily for me it went away in just a couple of days and I pray it is not a sign of things to come because my spine already has enough problems as it is. It is something I will need to report this to my pain management doctor to see if I need another MRI to make sure things haven’t changed as far as nerve damaged plus I am due for another radio frequency ablation this is where they use a probe inserted into my lower back to burn and kill off certain sympathetic ganglion nerves. What this does is help block the pain signal from that area from reaching my brain. The great thing is if it goes well it can last over a year and it means I don’t have to take more medication which is always a good thing.

Every few months I also get corticosteroid injections in my knees to help with that pain and I have in them because of damaged caused by a car accident in 1992, we are working me towards a radio frequency ablation for my neck they have to try all other avenues first, and then approval for my next radio frequency ablation for my back. I have also had corticosteroid injections in my tailbone (once you have that done all modesty goes out the window lol). Luckily my doctor puts me in twilight sleep to have these done and though it doesn’t always kill all the pain it does help make it bearable because I doubt I could do it wide awake because those are really big needles. I am not afraid of needles, but there is a limit to what is a bit scary and what isn’t and all of those are.

Some people have asked why I go through all of that and it is a simple answer really it is another level of pain control plus if I didn’t get injections I would need more pain medication than I now take and I definitely don’t want that. I remember when I first met my pain management doctor and one of the very first things we discussed. I told him I wanted the smallest possible dose to make my pain bearable because I was never under any illusion that my pain would ever go completely  away and so bearable was and is my goal. Sometimes it works and sometimes it doesn’t and sometimes it goes where it wasn’t suppose to spread to and makes the pain worse for up to a week and a week and half which frankly sucks. Truth is though most of the time it helps to some degree and that is better than more medication any day.

Remember a few years ago close friend ours made a flippant remark about how lucky I was to be able to legally take the medications that I do and it struck me like a blow both to my integrity and his evident disbelief of the severity of my pain. It made me emotional and made me very upset. I had to ask him if he thought it was a picnic to feel like someone was ripping your spine out of your back, if he thought it was a walk in the park to feel like your knees have been beat with a sledge hammer had to cry just trying to stand up, or to have neck pain so bad that you have back to back migraines and feel like someone was stabbing  you between the shoulder blades with a red hot knife? I also let him know truly offensive that statement was to me not to mention disrespectful. I told him that if they found a way to control all my different types pain I would destroy every single pain pill I had go through withdraw and never touch one again.

I told him I could not imagine why anyone would willing want to take something like that just for the fun of it. The risk of addiction and overdose taking it just for the hell of it just baffled me. I wish every single day that it hadn’t come to taking this stuff. He ended up apologizing and admitted that he never thought about it like that before (sadly very few do). At first I felt a little bad about jumping all over him the way I did, but then I thought about it later and I really didn’t because if he learned something like compassion, the dangers of taking prescription painkillers recreationally, or even think before they speak would be worth giving someone a tongue lashing over.

Comments are welcome be respectful and no profanity and God Bless!

I Have Been Thinking Lately…

I have been thinking actually a lot lately about what makes people judge some illnesses and disabilities different than others. Not that it is right, but it is one thing when a stranger judges an overweight person as someone that eats to much and lazy they don’t them and don’t know their lifestyle or history. It makes them a jerk especially if they try to shame the person, however, they don’t know them therefore there is no emotional attachment to that person so they really don’t care what the truth is.

What truly baffles me why those that are suppose to love us, take care of us, and support us are often the ones that are the most cruel. Not just unbelief that the person is sick or has been diagnosed with a disability or several illnesses that cause a person to be disabled and sometimes even when given ample medical evidence still refuse to believe. These people can be mothers, fathers, brothers, sisters, as well as best friends. I have a couple of personal examples of this that has personally happened to me and the first one happened to me three years after moving to Texas I had lost my job and was living with my best that helped me to move to Texas and his wife. I had just lost my job and was in the process of finding another one and one night we were sitting on the patio eating dinner and I had a stroke I was taken to the hospital and was admitted and I barely remember anything from the first three and my other best friend and her mother came to see me which I didn’t remember, but later her and my other friends wife came to see me. She had to go back to the car to get my phone and charger cord and while she was gone my friend told me she needed to confess something to me. What she said to me hurt my heart terribly she said that when I lived with her, her then husband, and father-in-law that I was lazy because when I wasn’t working or helping around the house I was sleeping a lot. She said at night when they were in their room she would tell her husband she couldn’t believe how lazy I was. Now back then I worked a full time job, helped around the house, and had a fairly full social life. That is why her words hurt so much. She said I never thought you might be sick ( when I was admitted I didn’t know I was diabetic and my blood sugar was 800 and I had ketoacidosis.) and ask for my forgiveness which I gave her. It did damage our friendship for awhile though because I struggled with her callousness and sadly it would not be the last time she would treat me that way. I believe I told the story of her taunting and laughing at me after I had a very painful injection in the side of my thigh. She told me straight out that she did not believe my pain was as bad as I said it was that changed our relationship forever. We didn’t speak to each other for three years and even once we started talking again it is not the same. I still love her, but I feel I can no longer depend on her for support.

I have had family members treat me in a similar manner and I just don’t have an answer as to why our loved ones would treat us like we are some stranger in the check out line at the supermarket.  So I would be interested to hear if any of you have any ideas other than they are jerks (that is stating the obvious) there has to be other reasons and I am sure they differ here and there.

Remember if you comment be respectful and no profanity if you comment. God Bless!

Don’t Judge a Book by it’s Cover…

I was reminded of something that happened to me in an emergency room a couple years before I was legally deemed disabled. I had always had a certain amount of pain associated with my lower back certain tasks like sweeping, mopping, and vacuuming always have caused me somewhat painful stitch in my side that radiated to my lower back so I just got used to doing them a little at a time. After I moved to Texas in 2006 I was trying to exercise more and to lose weight and it was the day after one of my long walks that I had the first really bad episode with my back.

I had bent over to pick something up off the floor and as soon as I grabbed whatever it was and started to stand upright again it was like someone had taken a red hot butcher knife sliced deep into my lower back from one side to the other. It literally took my breath it hurt so bad, but I managed to stand back up. My friend that I lived with at the time took me to the emergency room. I waited what seemed like forever to be called back. When I got back to the room I got up on the end of the bed and waited to be seen. After a few minutes the doctor came in and looked at the chart and says “I see here you came in with a complaint of severe lower back pain.” I confirmed that was indeed why I was there. So then he says “I saw you walking down the hall when they called you back and you had excellent posture which is not indicative of a person having severe back pain.” I am guessing the tears streaming down my face didn’t count as an indication of severe pain.

Instead of getting angry and saying things I would have regretted I simply told him to feel my lower back. So he moved behind me and started feeling along my lower back and he was like “How on earth can you stand so straight your lower back is like a brick wall all your muscles are in full spasm.” My answer was simply stubbornness I knew if I stooped over it would just make the pain that much worse and growing up I was never allowed to have bad posture. My Grandmother would smack us hard between the shoulder blades if she caught us slouching or stooping. She always asked us ” Do you want to grow up having a hump on your back?” So the diagnoses after some painful x-rays was a torn muscle and I was laid up for about two weeks on muscles relaxers and pain medication. I was okay after that for a few months after the second episode it started happening more frequently and each time it was more painful than the last. It wasn’t until much later that I found out it had little to do with the muscles themselves it was that my sympathetic ganglion nerves had been over the years damaged because of the missing discs in my spine.

My point here is that even doctors will judge you unfairly based on nothing more than how you look or act.  I think it is a lesson to us all to be very careful of what we say to others because things very often are not what they seem to be. Use love and compassion with all that you meet and think about how you would feel in their place. Everyone is different and it is actually one of the beautiful things in life and the good and positive things should be celebrated while the bad and ugly should be avoided. Always remember that you will also reap what you sow.

So it is Raining…

I have a love hate relationship with rain. I love the way it makes the air smell, I love that it makes flowers bloom, and I love it refills our aquifer ( I live in South-central Texas) because we have been in drought for years and right now we are out of drought conditions for only the second time in the nearly twelve years I have lived here. I hate rain because it makes every single joint in my body hurt and all the muscles ache like a toothache you know that painful throbbing ache. It may sound terrible but I try really hard to sleep through rainy days because my pain medication is least effective on days like this. Today that strategy didn’t work so I am here writing and listening Gabriel Iglesias on Netflix might as well laugh through the pain right?

I am a big one on laughter and happiness more so than most people because I never want to be one of those people that suffer from pain and let it take over and I become bitter and angry at everyone and everything. I see far to much of that at my pain clinic every single month and it is an ugly thing and very sad. People have asked how can you be so happy and cheerful while being in pain all the time. My answer is pain is what I have it is not who I am and I will strive hard to never allow it to take over who I am and make that angry and bitter person no one wants to be around. Because in all honesty even if you have compassion for a person like that after awhile you will start avoiding them because who wants to be yelled at and punished for something that isn’t your fault and I understand that. Also I don’t want to punish people in my life for the crappy card genetics has dealt me. It isn’t their fault and I would be a bad person to take it out on them when they are doing their best to help me and make me more comfortable so if you are one of those people stop it they are doing their best for you (in most cases) and you will end up alone.

If a person is treating you bad you have the right to defend yourself of course, but do it with dignity never ever stoop to their level because once you do you become no better than they are and they win not only in their eyes, but in the eyes of anyone witnessing the interaction (if you are out in the public). The minute you become highly defensive people will automatically assume that you that you are lying ( they will not understand that you have to defend yourself to idiots way to much). I take a different approach I remain calm I might ask them if I can see their medical license which must be special since they seem to be able to assess my health while standing in line at the supermarket without any background, x-rays, MRI, CT scan, physical examine, or any other tests. Now unless they are truly special idiots that will shut them up and you did not once stoop to their level and you win. Some people are just born jerks and don’t when to shut up, but you didn’t stoop to their level and so it is more likely that others nearby will then come to your defense as well so never allow one idiot to bring you down and never give them what they want and that is for you to make a scene. Turn it and let people see them for what they are and you can walk away with your head held high and they will slink away to whatever hole they crawled out of to lick their wounds.

I have learned many things in my journey with chronic pain one is no matter what you don’t have to lose your dignity I learned this after having my tailbone injected like four times and believe me there is nothing like laying on a table with your bare bottom sticking up in the air while having a conversation with the nurses and your doctor before being knocked out. Keep your sense of humor and it is so much more important than you might think in 2009 I had a stroke in my cerebellum which controls several very important functions like balance. I had to walk with a walker for a month because I would just randomly fall. After a month I decided I no longer wanted to be tied to a walker so I stopped using it much to the dismay of my roommates, but having had children and teaching them to walk I felt that my brain had reverted to the time before learning to walk and so I figured that I was never going to learn to walk again if I kept holding onto that walker. I fell a couple of times, but eventually I learned to stay on my feet it isn’t always graceful because as my daughter puts it I walk like a drunken toddler (no we have never gotten a toddler drunk, but you can imagine what it would look like). My boyfriend calls me the klutzy ballerina because I will be walking along and suddenly lose my balance so I am dancing around on one foot trying to find something to grab onto so I can steady myself it scares other people, but we laugh about it because we know I am not going to fall. I also don’t walk in a straight line anymore I walk at an angle to the left and didn’t realize it until I kept walking into things. My boyfriend said he was going to get me a harness and leash so he can just reel me back when I wander to far. So you have to keep your sense of humor because if you can laugh at yourself it will make your life much better.

The last lesson I will share for now is throw pride out the door. Pride is a horrible thing because it keeps you accepting help you are going to need. Like there are times I need help getting up if my knees are really painful like after storms and sometimes because they love to torture me. My boyfriend takes off my shoes and socks for me when I get home from a doctors appointment because it is very hard for me to bend over especially after sitting in a doctors office for hours. So let people help you it will make your life easier and at least a little less painful.

 

 

It Has Been Awhile…

I am going to try to revive this blog because I think it helps me to deal with all the feelings and stuff that goes along with living with pain every single day of my life. It also helps me deal with things people say to me that are at times very insensitive and if it is intentional then shame on them and if it isn’t then please stop and think before you speak.  A friend of mine saw me struggling to stand up and could see that it was really hurting me and the first words out of her mouth was ” I thought you take pain medication.” and my answer was I do, but what people don’t understand is it doesn’t kill all the pain especially when trying to stand up, walking, bending over, or standing for more than a few minutes at a time. Pain medications purpose is to make me more comfortable by making it where I don’t have to feel the full force of the pain all the time. I have had people tell me I don’t look like I am in pain and annoys me because how am I suppose to look being in pain? There are a lot of invisible illnesses and ailments for that matter most are invisible. If it is something that happens inside of the body it cannot be seen, but for some reason people seem to pick on certain things like pain when the pain is just a symptom for the different things wrong with my body.

I was born missing a few discs in my lower spine and has caused me a certain amount of pain most of my life, but now the damage to nerves, tendons, muscles, etc  is so much worse and there is really not much that can be dome except to manage the inflammation, muscle spasms, and pain. Five years ago when I first started seeing my pain management doctor he said that the arthritis in my neck was so bad that if he didn’t know better he would have thought I was ninety years old the damage is that bad. It causes migraines, I can barely turn my head to the right, and lots of jaw pain. When I turn my head to the right or tip my head back it feels like someone is shoving a big butcher knife into my neck between the bottom of my ear and the top of the hinge of my jaw the pain is very sharp and often makes me wince. Then my knees in 1992 I was in a really bad car accident that slammed my right knee through the glove box door and my left knee shoved my left knee into my radio shoving it to the engines firewall and although there wasn’t much damage to the outer part of my knees there was a lot of damage inside of them. They both rub bone on bone and when bent my right knee is actually shaped different than the left one from being slammed into then through the glove box door.

I have to admit it annoys me that people some of them are people I know personally will judge me off of what they see. I look normal and I don’t look sick on the outside so they think I am faking. When I found out that I have heart problems no one questions that and no one accuses me of faking heart problems yet they question my pain. One of our friends pretty much accused me of being a drug addict. The thing is I have tons of medical proof from x-rays to MRI’s and because my spine isn’t hanging out of my body, my neck isn’t torn open, and my knees aren’t ripped wide open I must be faking it. Several times a year I go in for injections that are so painful I am put into twilight sleep. I usually end up in more pain for a day or two especially in the neck. I know I shouldn’t let it bother me, but when it comes from those that are suppose to care about you it tends to eat at you.

So try to be more compassionate and remember not every illness can be seen and some people try to have more dignity than walking around moaning and groaning all the time just so people won’t accuse them of lying and being a junky!

Cold Fronts go Away…

I don’t care if you are weak, medium, or strong just go away I hate you! I am sitting here nursing two sore knees, but the right one is really painful and if I touch it feels like I have been kicked with a steel toed boot.

I am due for corticosteroid injections in both of them, but I have to wait for the insurance company to approve the injections. If they would approve the Synvisc ( knee fluid replacement. It is pretty much the same as the fluid that should be in your knee naturally, but much thicker) and it takes three weeks to do the three injections because of it being thicker. If they would just approve those again they wouldn’t have to worry about it injections for my knees for up to a year. They of course don’t seem to be able to see the logic in that and evidently would rather pay for the steroid injections every six months.

In the mean time I have to deal with the pain, limping which eventually makes other thinks hurt, and did I mention pain? The thing is they know I am going to need them because at the most they only last a few weeks (compared with a a year with the Synvisc). It is the same with my back and neck so why they cannot having a standing approval for them when they are needed it would really help to manage my pain better. I go weeks sometimes months before some injections get approved. Because of the damage to my nerves in my neck including the Occipital nerve I get headaches much like migraines. I had a headache once that lasted for about five months and it felt like someone was shoving a red hot poker through the back of my head and out my right eye. It is called Occipital neuralgia and if you would like to read about it go here http://www.webmd.com/migraines-headaches/occipital-neuralgia-symptoms-causes-treatments

Seriously no one should have to suffer that long from a headache like that for five months which literally feels like forever. All i wanted to do was sleep because at least for a short time I could escape the pain, but it would usually wake me back up after and hour or two. Cold fronts actually make all my pain issues worse, but since I have to walk I feel the pain in my knees more especially when a cold front passes through. Arthritis does not like cold of any kind. So please spring get here before i am tempted to cut off a leg above the knee!

God bless you all and thank you for reading my ramblings! Prayers and comments welcome and acting like the adults you are is appreciated!