Its All in Your Head

For once I did not hear those dreaded words today. My regular doctor is on maternity leave and I was so nervous about seeing a new doctor this morning. I should not have been worried. The doctor was wonderful. He understood that my fibromyalgia, arthritis, and PTSD were all combining for the perfect storm. He actually listened to my concerns and was empathetic to how much my life has changed since my diagnosis.

For me, today made me believe that there are doctors out there who are care and are good. They can make my experience as well as others positive. They are not focused on one aspect of a person, but the whole self. He even asked me what other things other than meds were helping me. How impressive!!

 

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One Huge Anxiety Day

ImageThis is how I wished that I felt right now. Instead I can barely type on my keyboard. If I could do today over, I would. Maybe it is not that simple. I would actually have to have gone back and said no to advocacy day.

Therein lies one of my biggest problems. I feel that I cannot say no to people. I do not want to disappoint them or make them angry with me, so I say yes. Saying yes today was not good. First, it meant waking up early. I usually do not get up early. Next, it involved leaving the house and driving over an hour away. Two of the things that promote anxiety for me. Then, let me take three more people with me in my car who I have never met before. Can anyone say to much? Why did I not say no?

In my head I was screaming no. Do not take anyone, I was already in over my head!! So, needless to say on the entire drive I was on pins and needles. Spending a day talking to others is not exactly my idea of a great time, esp. when I need to walk. By the time the day was over, I was ready to crash in my car or at least scream. Maybe even have an internal meeting about respecting each other.

Instead, my stressed ridden self had to drive back. Add rush hour traffic and I do not think that I am going to get to sleep very early tonight!! I am having trouble focusing and every noise is setting me off.

At least tomorrow, I am free. I can look forward to reading a book and spending time with my cat. Maybe, I will even attempt some artwork to allow younger parts to express their feelings about today. I am not sure that it will be pretty, but it will let my treatment team know how I am feeling,

Great Day Yesterday

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Between meeting up with the trainers and dogs from amazing tails and the dock dogs exhibit yesterday, I had a great time. I rarely leave the house, except for doctor visits. Yesterday, there was a pet expo within driving distance of my home. When I found out, I wanted to go. I love animals. I have a cat and am supportive of rescue groups.

I had never seen dock dogs live. I think that I saw a similar competition on TV years ago. Anyway, the object is for the dog to run down the dock and jump into a pool. The distance of the jump is measured and the dog is scored. Again, I am new to this so you may want to check out www.dockdogs.com.

Seeing the trainers from Amazing Tails was great. I was so surprised when they brought 2 dogs for me to work with. They actually took time out of their day at the show to try me with the different dogs and to allow me to experience what life would be like with a service dog for only a few hours. I did have to stop and rest, however; I actually was able to get around for two hours. Something I have not been able to do in so long. The dog allowed me to lean on him for balance, helped me walk, helped me get up, and at times sensed that I was starting to get anxious and would stop, look up and block people from getting to close. What a terriffic experience. After walking around, I was able to sit down and ask some questions of the trainers. They put me at ease with some of the questions that I had and made me even more comfortable.

When I was walking with the different dogs, one of the trainers asked me which dogs gate felt better. It took a couple times, yet I did realize that the gates of the dogs were different. One of them still hurt me knee, with the other, I felt no pain at all. Little did I realize that every dog has a slightly different gate. Something to look for I guess.

My  mom went with me yesterday. My mom has been in the dog grooming side of things for roughly 25 years. She has seen all breeds, worked with the owners of show dogs, has friends that do agility with their dogs, and has the uncanny ability to tell the truth no matter how much it may hurt me. Even she was impressed by what she saw. She had not seen me walk for months and to be able to walk around an exhibit hall amazed her. She also could not believe how the service dog stood still and allowed me to brace on him to get up. She is 100% supportive of my decision.

Not to get into to much detail. My mom is normally very critical of me. I am usually not good enough for her and it has hurt me over the years. To have her approval on anything is huge!! She thinks that I am making the right decision. It means a lot to me that she cares so much about me being able to have more freedom. Even she talked about the potential to walk to the park near my home once again and to be able to go out to stores. There is that hope concept coming up again. Hope is something that I thought that I had lost.

The day ended with me hanging out with my parents and spending time with my husband. I am lucky to have people in my life who support the journey that I have started, and like any journey, I think I will be faced with many challenges and rewards!!!

 

Cold Cold Go Away

I am not sure if it is the cold or just that I may have pushed myself to much this week, but I woke up in so much pain today. My back felt like someone had beaten me all night and my knees were aching. I cannot tell any longer if the pain is from the fibro or the arthritis. I wished that I knew. Sometimes if I check my temp and know I have a fever, then I will assume that it is the arthritis, since fibro is not supposed to cause swelling of joints.

I am more of a warm weather person. Needless to say snow and cold weather are really not cool. Then there was the little problem that I figured out yesterday. I have trouble walking in a straght line without my cane. No biggie most days, make due and move on. I saw the snow starting to accumulate and thought about how I was completely unpreprared to handle snow. Who was going to shovel? I knew that I could not shovel. Before the next snowfall, I need to find a neighbor or teenager that can do at least the front walk.

Looking at the upcoming forcast, the temps are supposed to be a little higher over the next few days. Come on Spring!!

“A Guided Tour Through Hell”

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This is what my therapist told me that another patient called trauma therapy. Just the word trauma does not conjure up warm and fuzzy images. I have been told that to fully process the event, I need to connect to emotions to what was happening at the time. Isn’t that what my mind has been working overtime to avoid doing.

Therapy is so counter intuitive some days. I know that I need to talk about these horrors, yet I cannot change them or make them go away. By talking about some of my trauma, OK let’s face it about 5 %, it has lessened how much it affects me when it pops up. Life is not the same after something happens to you that causes your whole way of thinking to change.

We are not born looking all around us at all times, avoiding places because of memories and feelings, being scared of certain noises because they remind us of something in the past. Trauma changes who we are as people and I do not think that it matters at what age the trauma happens, we are never the same. There is no going back, yet we cannot move forward without thinking of the past. The event/events affect us everyday.

I realize that some people are lucky enough to go through and come out the other side unscathed. I am not one of those people. The scars are deep. I have learned through therapy and my own journey that “hell” takes on many forms. Sometimes it is a nightmare, sometimes it is the phantom pain of my body as it remembers what happened, sometimes it is a flashback, and sometimes it is the inabiility to recall what has happened good or bad. I have lost chunks of my life that I would love to be able to get back.

Luckily, I have support and do not have to go through this journey alone. I have learned to pace myself. At the same time, the times when I have moved backwards are rough and seem to take longer and longer to get through. I have become an expert at avoiding the pain and often switch subjects numerous times just to not get to close to the event.

Physically and mentally, all of this has taken a toll. The funny thing is, I would not change any of it. I have become more empathetic and more aware of people because of my illnesss. I have learned first-hand that forgving is easier than being angry and takes a whole lot less effort. I have also learned that the more stress and anxiety I have, the more my physical pain presents itself. That is not to say that I am anywhere near the end of the tour. I think I am still near the beginning. Walking into the flames is scary and I need my treatment team to help guide me. The hope is that one day I can look back and know that I was able to get through those flames.

Feeling Whole Again

ImageThe picture is of one of the dogs from Amazing Tails,LLC, a nonprofit organization that trains service dogs to assist with a variety of medical issues. I interviewed with them today. I was so nervous when I arrived at what could only be called the most amazing farm!! When I rang the doorbell, I did not hear any barking and thought that I would not get to meet any of the dogs.

I was in for a shock. After the interview, I was paired with several of the dogs. After about 15-20 minutes, I had learned to roughly walk with the dog. The true training process for a new owner takes 10-14 days. I had reseaarched service animals, read about what they could do, watched video clips. Nothing compared to seeing the dogs today and having them assist me with walking. For the first time in 6 months I could walk without feeling Iike I was going to fall over. The dog kept me stable, the dog braced himself for me to get off the couch, and the dog helped me walk up and down stairs.

I was shocked when the dogs seemed to know when I was nervous and I actually became calmer just being around these amazing animals. If you want to learn more about the amazing work that these dogs can do and see more pictures here is the link: http://amazingservicedogs.com/

All of this training takes time and a lot of effort on the part of the trainer. Growing up with dogs, my parents could barely get our dogs to sit and here a dog is standing perfectly still to allow me to get up and then balancing me while I walk. They are definitely angels to me. I came away from the experience today amazed. Even though the wait for the dog can be anywhere from one to two years, due to availability of puppies and skill sets; the service dog will be well worth the wait.

Here is the thing and I am not trying to be a telethon. The dogs cost 10,000 dollars. This includes all of the vet care up until the time the dog is released to the new owner, the training, the cost of the animal itself, and the 2 weeks that the trainer allows you to stay in her/his home while you are learning the routines of the dog, the commands, and how to work with the service dog.

I have already had someone who has generously given the first 1500 toward the dog. The website has ways to give and the donation can be used directly for the service dog that I would get, provided that you gave my name.  I put a picture of only one of the many dogs on the site. I know that this is going to change my life and allow me the freedom to leave the house and get back into living.

I made a promise at the start of writing this blog that I would keep the readers up to date on what was happening. Today was a huge day!!! I do not think I will ever forget the feeling of being able to walk again for the first time. A huge thanks to the people at amazing tails!!

Today’s the Day

Excited, terrified, optimistic; I am going to an interview this morning for a service dog. Hopefully, everything will work out. I have a list of my doctors and took pictures of the house last night.
Last night was one of those nights that I wished I would have had a service dog. My back felt like someone had been beating me for hours. I could barely move. Of course, this is the time when I needed to go to the restroom. Talk about embarrassing moments. I could barely stand and pretty much had to crawl up the stairs. I really need help getting up sometimes.
I am hoping that one day there are less experiences like last night. I also hope that I can get out and just “be normal” without having to always be afraid that the pain and vertigo are going to kick in.i guess this morning will decide what is going to happen! My fingers are crossed:-)

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Change, change, and more change

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As, I am sure that anyone who has followed my posts can tell, I seem to change my theme daily. I am new to all of this and am trying to find a theme that fits my personality as well as what I am trying to convey.

I was up all night again last night. The hyper vigilance sucks. I seem to hear every bark, car door, little creak of the house. Really, it is not all that fun. Also I am really nervous about my interview tomorrow. What if I am not sick enough for a service dog?

I have met so may people who know someone with fibromyalgia. All of the people they know seem to be doing well, have jobs, and function. What is wrong with me? I am in constant pain. I need a cane to keep me balanced, I have a hard time remembering anything(apparently the wonderful fibro fog), and it hurts to do the simplest of chores. I wish I could be like those people that just seem to go on.

I guess it is like my PTSD. My therapist always explains that when a trauma happens to someone, they deal with it in their own way. Some people deal with the event right away and can get on with their lives. Others melt down, get help and get better. Then there are those who seem fine. They go back to their lives and continue with each day until one day everything hits them at once and their lives are not the same. They have nightmares, flashbacks, and are triggered by things in their environment that are out of their control.

Sometimes I wish that I could have just moved on from the abuse. I know that other kids did. Their abuse became something that is in the past, not something that follows them around like a shadow each day. They do not ruminate over what happened , they do not have nightmares or flashbacks, they are not afraid to leave the house by themselves. Most importantly, they have not walled themselves off from the outside world. But, that is not the case for me. I am working hard to get better, yet for me this has become that I move two steps forwards and three back, never seeming to catch up with where I would like to be. Always one step behind.

An Interview!!!

About this time last year, I would have been discussing where I wanted to interview for a nursing positon with my classmates and friends. Then the pain started and the downhill spiral after that. Now I think of how I am going to get in the shower without falling, how to carry everything that I need to while still using my cane, even the best entrance to use in a building or where an elevator is.

This morning, I had an amazing email from a service dog group who wants to interview me. As scared as I am to leave the house and meet someone new, I know that this can change my life. I feel like it is the first day of school and I am going to be sick (in a good way). Getting a service dog would mean independence, and maybe even a little bit of hope that I could maybe have a career one day. It .would also mean that I would not need to rely on my husband for so much. I am sure that he would be grateful for that. I guess that all that I can do is see how the interview goes!! Please keep me in your thoughts and thank you to those who have made so many wonderful comments as well as those who are courageous enough to share your stories.

 

Advocacy

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Today was one of those rare days where a actually felt fortunate to have my diagnosis. Not that I am a fan of how it makes me feel or the looks I get if I tell people what I have. This morning I was part of a training full of consumers, family members, practitioners, and just those concerned about mental illness. We spent the morning in a training that would assist us in talking to our state representatives at an advocacy day coming up. I was so impressed that just a few phone calls or emails done at the right time can make so much of a difference.

I was able to share what I was going to say about my story with the people that were in the training. Sometimes I do not realize how much my story impacts people and how far I have come in my treatment until someone reminds me. For the first time, I was really proud of myself. It took a lot to get up in front of strangers and even more to speak on behalf of those who for whatever reason cannot.

My experience with the mental health system has had its up and downs. I have met some truely amazing doctors and nurses who want nothing more than to help their patients get well in any way that they can. Unfortunately, I have also seen the opposite. I realize that going to my state capital could make the difference whether people have the care that they need or they get passed over. I want to tell my story and put a face on mental illness and the fact that PTSD effects more people that just veterans.

I realize that there are other issues that need addressing and funding is at a premium right now. If 1 in 4 people have a mental illness and are treated than that means that they can get a job and start to put money back into the economy.

Enough of my soap box. I am just passionate about mental illness and those that it affects.In other news I have had to make some decisions about a service animal. I really am leaning towards the company in CO. They are not the most expensive or the cheapest, however; they are willing to also train the dog to assist with my PTSD. The other companies and organizations seem more medical based. I am also excited to have been accepted into a support group for service animals and their trainers. I am looking forward to hearing their stories and getting advice!!

Overall it has been a great day!! By the way, the picture is from a dolphin encounter that I was lucky enough to have. His name was Cody and he was so sweet. Animals are a gift that I treasure. They accept us for who we are and ask nothing in return.