Disabled or Not Disabled

Disabled or Not Disabled

My theme for this week seems to be trees. No two trees are alike. Rarely are two leaves even the same when looked at close enough!

For the past seven years or so have been considered disabled by the powers that be. Maybe I should be clearer, mentally disabled.

As of September or last year, I was diagnosed with fibromyalgia after many months of testing. Now the doctor’s are thinking that there is more to my illness, yet I will leave that for another day.

I have an AA, a BS, and was one semester away from finishing my second degree. My mental health is finally at a point where I want to try to work part-time (16-24 hours at most). Today, my therapist gave me the name of an agency to call. According to them, I may not be disabled enough for their help.

What? I am not even sure what that means!! I have a handicapped tag, I am on disability. Is there anything else? I use a cane, a knee brace, and a back brace on a daily basis. All I was hoping for was to be steered in the direction of where I should be looking or what to put in a cover letter. Instead, I was told that an application would be sent and if I met the criteria then they would call me.

When asked what I had, which I thought was illegal, the person on the other end told me that she did not think that there were any accommodations. Little did she know that I had looked over the ADA website and there are about four pages of accommodations.

To be clear, I am not looking for accommodations. I am just looking for a job and am realizing that I cannot do what I used to do. Life has changed and I want to be able to work like everyone else.

Hopefully, I will fill out the application and get someone nicer on the phone who wants to help. If not, I guess I have some researching to do!!

Finding Myself

Finding Myself

**WARNING : COULD BE TRIGGERING**

Today I saw my psychiatrist and my pain doctor. My psychiatrist visit went better than I thought that it would. We went over one of my drawings and talked about what it meant.

She understands that right now, I am having a tough time. Getting a service dog is an amazing opportunity and so is the fact that I get to tell my story. There is just some part of me that still feels lost.

Lost as in I have no clue what my “career” will be. When I was in my early 20’s I graduated with one degree and I was working on graduating from nursing school when my illness hit me like a ton of bricks.

Then we talked about the fact that even when things were going well, I could not work full-time. Which brings me back to the question of what to do. Where is my life going to take me? Due to my illness I have issues with balance and can no longer lift anything heavy. Sitting in one place to long causes my back to have shooting pain and standing for any longer than 15 or 20 minutes begins to radiate the pain to my upper back.

I do like presenting and telling my story. There are no programs out there that teach you how to become an advocate. That is what I want to do. I want to help other patients know the rights that they have and assist their families in finding support.

Am I ready to start over again? I know that I need to talk to an advisor about what classes I have behind me and where I can go. That is scary for me. Change is scary, yet it is what I need to do.

My second appointment was with my pain doctor right after my appointment with my psychiatrist. I had opened up and was feeling exposed when I walked into the office. The only topic that I planned on exploring was my back brace that does not seem to be working. Instead, I was asked if I was feeling depressed. YES! Then came the next question. For those of you who have been in the hospital you know. The first is was I thinking of hurting myself? The second was do I have a plan? My sarcastic and true answer is that I have had a plan since I was in high school. I did establish the boundary that I was not going to talk to a pain doctor about my mental health problems.

I am proud of myself for setting a boundary and actually worked out of the office feeling better than I did going on. Hopefully, the job question will get solved. I just have to think of things in a different way.

So, why the tree. I love trees, esp trees that do not have leaves. I thought that the picture represented where I am at. I feel like the negative image of the tree. One can see the tree and there is color, just not the colors that one would think a tree would be. Right now I am not where I would like to be, yet I know that I will get there.

Fibro Strikes Back

Yesterday, I felt OK to do a little shopping for the kids. My cat woke me up this morning. Ever get the feeling something just is not right! Well that would have been me and my cat sitting on me did not help things. The dizziness struck first. Not the kind where the room is spinning so much as the floor feels like it is moving underneath me.

When I sat up to get out of bed, the back of my hurt. For those who like 0-10, it was at least a 6. Then I tried to get up. After a few attempts, I made it out of bed and tried to go down the stairs. I should have gone down on my butt because that is where I wound up.

Between the headaches and the dizziness, I started to feel nauseous and exhausted. One’s body can only take so much and I think mine was totally telling me that it was done for the day.

To my disappointment, I had to cancel physical therapy. Great, now can someone explain a cancelation charge to my illness. To sum today up, I felt like crap. There is just no other way of putting it,.

Which brings me to tomorrow. Two doctor’s appointments. I do not care how bad the fibro is tomorrow I cannot cancel two appointments. Hopefully, it had its fun today and was the worst it is going to be. Wishful thinking anyway.

Right now I am sore and tired, yet I cannot sleep. What a fun illness!

From Bad to Good

From Bad to Good

Yesterday in the words of “Annie”, my favorite musical “Was plain awful.” I slept for most of the day since I could not sleep the night before. When I was not sleeping I was falling. Luckily, there were cushy chairs to catch me.

Today was better. I still slept later than I would normally like to have, yet I was able to go to the store with my mom and get the kids shorts since they are all growing so quickly.

We also went to lunch. The service was great, but the cook was having a really off day. Our entire meal wound up being comped-even the desert (the best part). Tonight I am on the computer and plan to read a little.

Tomorrow starts another week. Physical therapy to start and end the week. Oh well, hopefully it is making me stronger or doing something. I have been completing my exercises each day and still have pain, yet I do not think the goal is to be entirely pain-free, just in less pain.

If the goal is less pain, I think that physical therapy may be working. So the weekend started out crappy, yet ended on a good note! Next weekend the kids will be here. I am going to try to use their gift cards with them!!

Peaceful Nights!

Peaceful Nights!

For the past few nights, maybe weeks, I have not been able to sleep. I try all of my bedtime routines. Even sleep meds are not helping any longer. Nighttime is hard and there is just no way around it at the moment.

I choose this picture because I am not sure that sleeping was ever a skill that I had mastered. According to my parents, I kept them awake all night often crying for hours on end. For the record, I was lucky and all 3 of my kids slept 6-8 hours a night by the time they were three weeks.

I bring this up because my mother swears that there is a curse in our family that keeps us up all night. For me, it is not a curse, it is what happened to me and the effects that I still feel from those events of the past. To me, my PTSD and not sleeping go together.

If only I could go back and see what was happening when I was an infant. What life was really like and how I really was. Maybe if circumstances would have been different for me, then sleep would not be such a challenge!

New Ideas!

New Ideas!

Disclaimer: I am not an artist or designer. I was one of those kids who the art teacher just rolled their eyes at. The gifted and talented kids were in my art class and to this day, my art sometimes looks like a 5-year-old drew it.

Well, maybe the 5-year-old did draw some of it.

Anyway. To get back to my newest find, Washi Tape. I love it. for a few dollars a roll, I can now decorate my own journals!! This saves me money and allows me to make the journals my own. Ok. So I am a little OCD when it comes to picking out a journal. First I have to find one that I even like. Then all parts have to agree. For me, blank pages work the best. That way, I can draw or write. Whatever we are in the mood for.

This morning I was not feeling the best, yet after decorating a journal with the decorative tape and a few stickers I felt better!!

Thanks!

Thanks!

Thank you for following my blog. I know that I am all over the board sometimes. I talk about PTSD, DID, Fibromyalgia, Service Dogs, and even some other random topics. I appreciate all of the comments and just the fact that you took the time out of your day to look at my blog.

When I started this blog, I did not think that anyone would want to read it. All of you have proved me wrong.

Just a little update: I have physical therapy today and already not feeling 100%. For some reason my balance issues have been really bad lately.

Trauma therapy has been interesting and I am still working on completing the assignment regarding if I were good enough. Apparently, I focused a lot on how my parents and everyone else around me would be different, not how I would be different. I usually do not even go back and read what I wrote. Now I need to not only read, but complete an activity. We shall see how that goes.

On other fronts, I have an amazing new color be number book that seems to be a great distraction!!

Again, thanks for reading all about my adventures!!

New Lands!

New Lands!

Today, I read my therapist my journal assignment on how my life would be different if I was “good enough”. I was really proud of myself for doing the assignment, even though it was hard to get through.

Part II came today. Apparently, I wrote about how if I were good enough it would have changed my mom and dad. One aspect of myself that I have learned is that one cannot change unless they really want to and it takes a lot of work.

By the time that my therapist and I were finished today, we had compared my parents to dominoes. Sure my presence caused some to fall over, however; there were many that were knocked over before I ever came into the picture. Those dominoes were never acknowledged and if they were, they were not dealt with.

Maybe I could have never been “good enough” for my parents. I could not replace two kids that they lost or be the perfect child that they wanted. Just like everyone, I was born with flaws.

I guess when I think about my own children, I get it. Before a child is born, there are all of these thoughts about what he/she is going to be like. As a parent, my kids are sometimes who I thought that they would be and at other times they shock me. To me that is great. That is what makes life such an adventure!!

For my parents, it is what they hated. I was not who or what they had envisioned. Good enough was probably not on the radar.

The picture I chose reminded me of a new planet. Right now, I see a lot of red. Some of what is coming up is causing me to get in touch with feelings of anger. There is a speck of light on the horizon. My hope is that light grows and that I can continue to progress through my memories, however painful.

Be Patient

Be Patient

Sometimes the wait is worth it! I know it will be for a service dog. I still am not sure which service dog that I will be getting, yet I know that I am part of a group of people who love and care about dogs and how they can assist those with a disability.
Almost two months have passed since I interviewed with the organization. Since then, I have been lucky enough to meet up with the dogs on one occasion.
Even though there is a lot of time to go, I am nervous. The dog is going to need to be walked and taken care of. What if I am having a hard time? Is that why he/she will be there? Give and take. He/She will help me get out of bed and in turn we can both take a walk and get out of the house.
Then, I am worried how my friends and family are going to accept a dog coming into their homes. I know that my friends and family are supportive, yet a 70 lb dog is something else!!
As hard as it is to wait, I know that the wait will be worth it and I will be ready.

Maybe if We All Put Our Heads Together!

Maybe if We All Put Our Heads Together!

Once upon a time (yes I love faerie tales) I was a science teacher to middle schoolers. For me, science is still fascinating. Fibromyalgia is not easy to live with and I am sure for researchers and doctors that it is even harder to understand.
One of the most common statements that I have heard and read about fibro is that it does not get worse. Sometimes, I wonder who writes these things or how the researchers and doctors made this conclusion. What was their sample?
I know, for me, that my illness has progressed. I am wearing a brace on both my back and my knees. My pain has gotten worse as has the numbing sensation in both my hands and my legs. My left leg is so weak that I cannot raise myself up on it.
So, once again, I had a bright idea, well an idea at least. I want to find out who completed the research and talk to them. I want to know the sample size.
Medications cannot be the only solution to fibromyalgia or those of us that have it would not feel a difference with treatments such as physical therapy, TENS, heat or cold, and acupuncture to name a few.
Fibromyalgia, or at least the diagnosis is made based on the elimination of other illnesses. What if the tests are negative because there is just not enough of whatever they are testing for in our blood? What if there is still a trace amount?
What if fibro does get worse for some people and not for others? There are other illnesses that are spectrum illnesses. Is fibro one of those?
I guess I just want to know why some of the people who I have met with fibro are working and going on with their lives, while others are moving from canes to wheelchairs. I do not think that it has to do with mindset or attitude. The patients that I have met are still fighting the battle everyday.
So maybe we all need to put our heads together and come up with a different definition. Maybe things are not as clear-cut as the medical community would like us to believe. Fibromyalgia would not be the first illness that the criteria would need to be changed on and I do not believe it will be the last!