Scheduling…

I was called yesterday with my surgery and pre-op date. They scheduled me for Friday June 13th at 7 am for my surgery. That date is also a full moon. My pre-op for June 5th at 1 pm. Then five minutes later they called back and said my insurance didn’t cover that hospital so I would have to wait until next week for them to call me with my new dates for a different hospital. The good thing is I will still be able to have the robotic assisted hysterectomy at the other hospital. That is very important to me. Not to have the large incision.

The hospital stay may be only one night, with the robotic assisted surgery. I do not like to be in the hospital, though with the way things are here, I am thinking it may be better at the hospital than here. I find the robotic assisted surgery fascinating! I have watched several on YouTube. They say in order to be fully prepared, you need to have knowledge of the surgery you are going to have. It is also valuable to talk to or read posts of other people’s experience with the surgery. I have read several posts and I feel comfortable with the procedures. I think what I fear is how much pain I will be in when I wake up. I am on high doses of chronic pain meds so they have to be sure to give me larger doses of pain meds while I am in the hospital or I will not have any relief from the pain.

Unfortunately, there is no end in sight to the negativity and fighting going on in my home. No matter what I do or say, they just cannot get along. I see next week being a huge issue when my son refuses to watch my grandson in order for my daughter to go to work. Today, my son tore up the door on the shed that is built into my house. He flipped out after my daughter got mad because they did not want to take her with them to go out to eat. Yelling, name calling and cussing followed. Tempers flared and my son demolished the door. My daughter said how she hopes he dies and it will be soon when he dies because he is insulin dependent diabetic and doesn’t take care of his blood levels and they are both alcoholics. I cried my eyes out and had to lay in bed. I couldn’t even move until I took my anxiety medication. I often feel sick and everything is bothering me anymore.

I am so tired of hiding in my room to avoid their crap and yet I still have to be stuck in the middle of it all on a daily basis. I keep saying I have nothing to do with their issues, but they make sure I am being screamed at, cussed at and dragged down when ever possible. My mind has completely shut down. I feel like I cannot function any longer. My body is exhausted even when I have not done a single thing. None of this is good to have going on prior to surgery. I did do a meditation yesterday and it helped until I began to hear yelling and nasty words. I’m just so very tired………….

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Mental Issues…

I was sitting here, a very rare time just now. No one is here in this house but me. I enjoy the peace and quiet when I get it because it is rare. Then I was remembering how when I was in my twenties, If I was completely alone, like when the kids were at school and my spouse was at work, I often would freak out. I would feel enormous fear inside, as if I might die and no one was there to help me. Crazy thoughts would fill my mind. I feared being alone even if it was for a few hours. I never wanted my husband to go to work I wanted him home with me. I would not take a shower if no one was here either.

Now, I am going on 45 and I have been through so much crap that I handle things better, yet I still get a strange feeling if I am alone for a long time. Nothing like back in the earlier years, before my son died and my husband cheated on me, left us and I lost everything I had. I like having spells of no one here now, but I don’t want to live alone, that’s for sure.

“B” has been so nice to me the last four days I started feeling closer to him and when I was in a lot of pain earlier I called him just to hear his voice, but he didn’t pick up until the forth time I called. He snapped at me and I lost the little bit of closeness I had found. I have and always had, some serious mental problems.

I can feel the panic when I think back on it all as if it is happening right now. The combinations of medications I am on and the deep breathing exercises, has helped keep me much calmer and I have less major attacks, though I do still think things I wish would never pop into my head. Why was I born this way? Why has my entire life been such a struggle even just dealing with my own mind. Even as a small child I was so full of fear and terrorizing thoughts.

I don’t know if I dreamt it a lot or it was part of my mental problem, but as a little kid I was terrified of a hand. A hand was always trying to get me to hurt me or kill me. In today’s day I surely would of been helped at a young age and maybe I wouldn’t have had so much trouble through my entire life. If I would of been given help early on, maybe I would be in a much more stable mental place. I can’t go back and change anything though. I am just really curious as to what all is really wrong in my head. How does a small child have so much fear and terror, then it amplify through the years to an adult who was terrified to be alone and felt I was going to die, with major panic attacks. I don’t like my mind. I hate the thoughts that fill it and cause me so many issues.

Now I am very worried over the pain of the surgery I will be having. How I have been on high doses of pain meds and how the surgeon needs to be sure to give me enough meds in the hospital to even touch my pain. If I were given what a normal person is given after surgery it would do nothing for me. Here I am again, in the place of fear! A complete hysterectomy and debulking surgery, with 8 weeks of recover. The giant incision scares me the most. Being left in pain is what I truly fear. Yet I have been in a ton of pain for almost four years now. Pain that has spread and gotten more and more intense, requiring more and more meds, and now even on the meds I have way too much pain. I pray, after I heal, that pain stops! I really need something in this life to ease up on me. Pray for me………….

Stress…

I have felt overwhelmingly like I am drunk. My vision goes double and I stumble like I had been drinking, but I do not drink at all. I thought one of medications were to blame, so I did not take that medication today and I found that I made it most of the day before the drunkenness occurred, then when it did occur I realized it was being brought on by way too much stress.

I have been very worried about possibly having cancer since they found a growth on both of my ovaries, but the one on the left is much larger and pushing my uterus over to the right. I have to wait until Thursday this week for the ultrasound review and then see what type of doctor I have to go to for surgery. A regular GYN if the growth is not cancer and a GYN oncologist if it is cancer and I will have to have chemo as well. It is believed that this growth is the cause for much of my overwhelming pain in my low back and left hip area. This is where the pain gets way more than I can handle and today I couldn’t catch a single break from that pain no matter what I did.

I have begged for some peace in the house while I try to deal with my extra stress and worry this week, but no one can possibly do that for me. My two adult children only care about drinking and when I came out of my room this evening they had a friend over and were playing beer pong on my dinning room table. The friend over is the one that either shows up here already wasted or ends up wasted while he is here. He has had many problems over the last few years and I have kicked him out of being aloud over several times already. So, I was pretty pissed off when I saw this and told them they can NOT play beer pong in the house and then told the friend I would not tolerate him being wasted over here. The next thing I know I have tears in my eyes and I am fuming mad, then the drunken feeling started up again.

I have been going to bed by 11pm and getting up around 10am, then needing a 2 hour nap in the afternoons. I have also been having pain that goes up toward my rib cage on the left side of my pain, which is new. I really just want them to hurry up and take the growth out, but I fear having to have a hysterectomy due to the large incision and recovery time and I really do not want chemo as that makes you so ill and I cannot stand to throw up. I feel like I am dying when I throw up. So here is hoping for no cancer and the growth being able to be removed through laparoscopy! But hats how my gall bladder was removed and I did pretty good from that. The fear of cancer is high since I had so much sudden weight loss over the last year and other things that scream cancer. I often feel like I could handle it better if someone in this house would just open up to me and let me get out all my worries to them, but they all just tell me not to worry about it until I get the results………….

You never know what each day will be like…..

Yesterday was a good day over all! I felt pretty good and I had not felt like that in a very long time. My pain was at the lower end of horrible, which is a relief in its self. I can tell you that what I eat, effects me in every way the next day. For instance, two days ago I ate very healthy and low calorie. Then I had a good next day. Yesterday I ate not so healthy and went over my calories a bit because it was my ‘SO’ birthday. Today I don’t feel very good. Mentally and physically I am effected by what I eat.

I am down a solid forty pounds now. I track what I eat in a free AP that also counts your calories and lets you put in your weight, etc. my goal is to stay below 1550 calories per day and I prefer to be under 1400. Most days I eat between 1200 and 1400 calories. My digestive issues are much better when I eat naturally occurring foods like nuts, seeds, fruit, vegetables….. Beef is horrible to my digestive tract. I will no longer eat any beef. It causes cramps and stomach pains along with nausea in me. Cereal I can also eat with no problem and I usually eat frosted flakes. So I will eat much better today and have a much better tomorrow.

My pain is high, so I have to go back to bed when I finish this post. The depression is worse when I consume any form of junk food, even though I made his cake from scratch as always. I feel depressions ugly head poking around. The stupid negative thoughts that depression brings with it! I wish every day I could feel like I did yesterday. I woke in a good mood and most of the day I felt awake and energetic. Positive thoughts flowed easily. I even thought, to myself, that must be how normal people feel. People that can wake up and get the day started with a smile on their face. Tackle all the chores and kid care needed and still have a smile on their face. Personally, since as far back as I can remember I have never felt normal or was life ever easy to live. I can remember back to age four! Four years old and full of fear, depression and anxiety! My grandson will be four in January. He has definite anger issues and is behind in his speech. I love him to death, but he can be so evil sometimes.

Not having a support system really sucks! I just want to be comforted and hugged. My only child that was always there for me and hugged me often is gone, been gone for ten years now. My living son has never been very affectionate. He always comes to me when he needs help or is in trouble or gets hurt, but other than that, he is very different! I miss my deceased son so much. We always talked and if I couldn’t sleep he was right there talking to me. Hugs were always available too! My grandson is very affectionate and hugs me often and says “I Wuv You!” My daughter can be affectionate, but only really cares about herself and lives far away because I had to put my foot down and not let her come back home again. She has said horrible things to me like “I can’t wait until you die so I can piss on your grave”. She has a tendency to do drugs, any drugs too. She is living with the man that raised her, the only father she ever knew, her step dad which is my youngests father. Yet he never calls or does anything for his son. Out of sight, out of mind!

I should of posted yesterday when I was all positive instead of today with all the doom and gloom.

Waking to another pounding headache!

Yet again, I have been awaken by a severe pounding and crushing headache! It feels as though a vice is clamped upon my entire head and tightening and crushing inward. I know much of these severe headaches are coming from my neck. I have degenerative disc disease throughout my entire spine. My severe pain in my neck started after I was beaten from behind by over a dozen gang members that were going after my neighbor. I will post on that one day, that was in November of 2010!

I feel as though I will die of the pain before I can get it under control when it happens. That is how horrible it is! What do I do? I get up and wobble into the bathroom. I take ibuprofen and my morning pain medication and I sit there and do neck stretches slowly while breathing. Much like the simple yoga for neck pain poses. Usually I can gain control of the horrible headache after doing this for a little while. The stretching also interrupts the constant pain. On occasion though, I am left to fight it for hours. Thankfully, today I gained control over it in less than a half hours time.

When I awaken to this pain, my panic and anxiety run high. Who wouldn’t feel that if the woke to such terrible pain throughout their head and neck? Breathing is a huge part of regaining control. As with all my anxiety and panic attacks, I have found deep rhythmic breathing to aid tremendously in easing it down. Breath in slowly and deeply to the slow count of four, hold it for a count of two, then exhale slowly to the count of four or more. I spent years meditating and programming the word “Relax” in my mind while I was in a deep and relaxed state. Now I rhythmically breathe and see that word in my mind and I can calm down much quicker, usually!

I know back when the severe panic attacks took me over, in 1995, I wanted to die rather than live that way. It seemed it would never end. Eight months of pure hell! Only to return like clockwork every two years! Ugh! I fought taking medication for so long, only to discover the medication along with meditation was my only escape. It seems my entire life I have traded one thing for another. Once I was able to get ahold of the panic, I lost my son, I then had my husband at the time cheat on me and on drugs and then left, lost my dream home in the country away from people (people increase my panic) and then hit with severe and disabling chronic pain! WTF?

I can tell you one thing, never ignore your gut feeling! Mine has always told me what was going on, but I would refuse to believe it only to find out in the end that it was telling me the truth. When I would ignore it on major issues, it would push back against me and MAKE me open my eyes to the things going on around me! It was always like I knew what was happening but didn’t want to believe it so I tried to ignore it. Who wants to believe their husband of 16 years is off banging a gal from work and snorting cocaine! SMH! I listen now! It has never been wrong.

My adult son will ask me a question, then argue my answer. He drives me nuts sometimes. He is 21 and lives with me. He is insulin dependent diabetic, on an insulin pump and extremely lazy! He plays video games most of the time, but does help out with my grandson that we are raising since his mother left. Yes, my daughter is a whole other can of worms. He drinks way too much and doesn’t take care of himself any where near what he should. I often feel he is just trying to die as soon as possible. His father was also an alcoholic. If I could go back in time I would never be with a man that drank, that’s for sure! Young and stupid is all I can say.

I often wish I could just go back to being a kid and not having to worry about things or take care of them. We want to grow up so bad as kids. Then spend our adult life wishing we could be a kid again. I would in a heartbeat. As long as I could go back knowing what I know now so I could change the life I laid for myself.

I am a Goddess…

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Stopped the medication that blew me up and swelled me out. Finally lost all at weight gain and now I have been loosing more and more, which is a good thing. The pain is bad, but tolerable most of the time on the medications I am currently on. I have to try to keep my mind busy or I dwell on the pain. So I craft as much as possible. Can only sit so long. Cannot stand long at all! The meds all make me real tired, so I sleep more than I am awake.

I found myself in a fantasy today… I really do believe it is impossible for one man to truly satisfy one woman. Wouldn’t it be great to have six men all working together to make sure you were taken care of and happy!

Sharing a post I just read

I had to share this because it tells the truth………

Myth-Understood
by Purple Law Lady
I read this blog post from The Invisible F and was really impressed by the way the information was presented. I just HAD to re-blog:

Six Common Fibromyalgia Myths
WHICH OF THE FOLLOWING IS TRUE?

(A) NESSIE IS REAL

(B) FIBROMYALGIA IS REAL

*

Alarming doesn’t quite sum up some of the myths people have about fibromyalgia – a condition that affects possibly 3-6 % of the world’s population.

I assure you, it is real. The pain is real. The debilitating chronic exhaustion is real. The insomnia is real. So is every other symptom that makes it a dreaded illness to contend with.

What is also real is the ignorance that people show towards it and us – the sufferers. Here are some of the common myths that people have about FMS.

Myth 1: It’s all in your mind.

Truth: Really? When people perpetuate these misconceptions they add to the stigma of fibromyalgia as a figment of our imagination. We are not hypochondriacs. 20 years from now when science and medicine expose more about this baffling condition, you’ll have to bite your tongue. Don’t be part of the problem, please.

Myth 2: You can cure yourself with…wait…don’t tell me, the acai berry! No wait! what was the latest quick fix being advertised online?

Truth: There is no such thing as a quick fix. Most sufferers will tell you they’ve tried any and everything, desperate for a solution, as well as spending years to and from specialist doctors, doing all manner of medical tests.

Myth 3: Some good ole exercise will fix yuh up!

Truth: This is one of those times when I have to once again go ‘really?’ I’m not saying exercise doesn’t help but the notion that some doctors and people have that regular exercise will sort our problems is wrong. Most sufferers, including myself, CANNOT manage proper exercise.

On a very good day, if I push myself I can manage 9 minutes of graded exercise with a break in between. Then I pay for it afterwards. Sometimes we can be in bed, sore and aching for says after exercise. Every sufferer is different of course. What I will say is routine stretching and physical movement (i.e. walking the dog or rushing to work) sometimes helps in decreasing the severity of muscle pains. It doesn’t in any way affect my debilitating exhaustion as the doctor promised.

Myth 4: It’s another excuse for laziness

Truth: Firstly, let me say shame to all those who beguile the social welfare system by abusing the invisibility of fibromyalgia and other chronic pain illnesses. Such actions are ignominious and hurt the REAL sufferers.

Secondly, to the sceptics, we are NOT lazy. Just because we look well it doesn’t mean we are not in pain or badly exhausted or dizzy or hurting from one of our myriad of symptoms. We might look normal but our bodies are functioning with defects and abnormalities in our central nervous system. Take it for granted that the simplest of activities tire us immensely and can encourage flare ups. For me sometimes it is having a shower, combing my hair or walking up a flight of stairs. Many of us fix steely facades on and we brave the day. We take care of families, we force our bodies to work…because we have to. Our friends who cannot manage this and depend on social welfare, are no less courageous than we are. So judge us only if you can walk a mile in our shoes damn it.

Myth 5: You just need to lose weight

Truth: If I got one pence for every time a fibromyalgia sufferer has complained about being told this, I’d be well on my way. Certainly, as with any condition, having a healthy weight contributes to the overall well-being of the individual. But to suggest to any sufferer that their muscle pains and slew of other symptoms like migraines, irritable bowel syndrome, insomnia and exhaustion would be remedied solely by weight loss, well… it is ludicrous.

Myth 6: You can live a normal life like everyone else

Truth: I wouldn’t call it a normal life, whatever normal is anyway. We TRY to live but with great difficulty. TRYING to live with chronic pain and unbearable exhaustion, migraines, cognitive impairments etc makes it incredibly hard to focus on THE NOW. And what is living if one cannot live in the present? And enjoy the beauty of now? Have you tried to think clearly or creatively when you have a bad migraine or pain? Well multiply that and imagine having to live with it everyday. We contend with something like this and I cannot call this normal. Also, please note comparing other’s ailments to ours doesn’t reduce our suffering in any way. It serves no purpose.

What other myths have you heard or had to debunk? Tell us so we can clear it up for them.

Gentle hugs

Purple Law Lady | February 20, 2013 at 10:47 am |